A3289

GERONTOLOGY for the Health Care Professional

FOURTH EDITION

Edited by

Regula H. Robnett, PhD, OTR/L, FAOTA

Professor, Department of Occupational Therapy University of New England

Nancy Brossoie, PhD Senior Research Scientist, Center for Gerontology

Virginia Tech

Walter C. Chop, MS, RRT Professor Emeritus, Respiratory Therapy Department

Southern Maine Community College

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Library of Congress Cataloging-in-Publication Data

Names: Robnett, Regula H., editor. | Chop, Walter C., editor. | Brossoie, Nancy, editor.

Title: Gerontology for the health care professional / [edited by] Regula H. Robnett, Walter Chop, and Nancy Brossoie.

Description: Fourth edition. | Burlington, MA : Jones & Barlett Learning, [2020] | Includes bibliographical references and index.

Identifiers: LCCN 2018013913 | ISBN 9781284140569 (pbk. : alk. paper)

Subjects: | MESH: Geriatrics | Aged | Aging–physiology | Geriatric Assessment

Classification: LCC RA564.8 | NLM WT 100 | DDC 618.97– dc23

LC record available at https://lccn.loc.gov/2018013913 6048

Printed in the United States of America

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Dedication

This edition is dedicated to:

The older adults who have shown us how to live productive, healthy, and happy lives and for

reminding us that age is more than just a number.

Our authors for their tireless writing efforts and commitment in educating healthcare workers,

from students to seasoned professionals.

Our families who sacrificed their needs and wants when our work on this edition had to come first.

We thank all of you.

–Regi, Nancy, and Walter

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Brief Contents

Introduction How to Use This Text About the Authors Acknowledgments Contributors Reviewers

Chapter 1 Age Matters: Profiles of an Aging Society Chapter 2 Social Gerontology Chapter 3 Aging in Place and the Continuum of Care Chapter 4 Loss, Grief, Death, and Dying Chapter 5 Health Literacy and Clear Communication:

Keys to Engaging Older Adults and Their Families

Chapter 6 Policy Issues for Older Adults Chapter 7 The Physiology and Pathology of Aging Chapter 8 Cognitive and Psychological Changes Related

to Aging Chapter 9 Functional Performance in Later Life: Basic

Sensory, Perceptual, and Physical Changes

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Associated with Aging Chapter 10 Drugs and the Older Adult Chapter 11 Nutrition and Aging Chapter 12 Perspectives on Oral Care in Healthy Aging

and Prevention for the Older Adult Chapter 13 Sexuality and Aging Chapter 14 Reframing Aging Issues to Ensure a Better

Future

Epilogue Answers to Review Questions Glossary Index

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Contents

Introduction How to Use This Text About the Authors Acknowledgments Contributors Reviewers

Chapter 1 Age Matters: Profiles of an Aging Society

Nancy Brossoie, PhD Regula H. Robnett, PhD, OTR/L, FAOTA Walter C. Chop, MS, RRT

Introduction Global Aging

Age, Sex, and Distribution Fertility Rates Longevity Migration

Aging in the United States Age and Age Groups Geographic Distribution Sex

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Race Marital Status Living Arrangements

Economic Status Poverty Income Sources of Income

Work and Retirement Status Health Status

Chronic Health Conditions Functional Limitations Vaccinations Self-Rated Health

Caregivers Long-Term Care Services

Death Causes

Aging Successfully Successful Aging Quality of Life in Old Age

Summary Case Studies Test Your Knowledge References

Chapter 2 Social Gerontology

Nancy Brossoie, PhD Walter C. Chop, MS, RRT

Gerontology Historical Perspectives on Aging Theories About Aging Ageism

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Ageist Stereotypes Myths About Aging Ageist Language Ageist Attitudes of Healthcare Professionals Media Stereotyping of Older Adults

Social Roles in the Second Half of Life Retiree Grandparent Surrogate Parent Caregiver Social Roles in Context

Social Relationships Personal Relationships Computers and Social Media The Aging Couple Aging Parent and Adult Child Never Married or Childless in Late Life Friendships

Elder Abuse Victims of Abuse Self-Neglect Among Older Adults Perpetrators of Abuse Signs of Abuse Mandated Reporting

Employment and Civic Engagement Workplace Discrimination Retirement

Summary Case Studies Test Your Knowledge References

Chapter 3 Aging in Place and the Continuum of Care

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Ann O'Sullivan, OTR/L, LSW, FAOTA Nancy Brossoie, PhD Regula H. Robnett, PhD, OTR/L, FAOTA

Introduction Aging in Place

Independence Productive Aging Competency Person-Centered Care Technology-Based Services Universal Design Continuum of Care Independent Living Active Adult Communities Congregate Living Arrangements

Community-Based Services and Supports Home and Community-Based Services Home Health Services Program of All-Inclusive Care for the Elderly Aging Network Services

Service-Enriched Communities Continuing Care Retirement Community Assisted Living Facility Nursing Facilities Rehabilitation

Person-Centered Approaches to Institutional Care Hogeweyk Eden Alternative

Special Topics and Issues Telehealth Paying for LTCSS Homelessness Home Modifications Reverse Mortgages

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Summary Case Studies Test Your Knowledge References

Chapter 4 Loss, Grief, Death, and Dying

Regula H. Robnett, PhD, OTR/L, FAOTA Nancy Brossoie, PhD

Introduction Loss and Grief

Loss Grief

Theories on Managing Grief Attachment Theory Stage Process Model Phase Process Model

Coping with Loss and Grief Complicated Grief

Supporting a Person Who Has Sustained a Loss Rituals Burnout Compassion Fatigue

Death and Dying Death Perspectives on Death

Seeking a Good Death Advanced Directives

End-of-Life Care Options Hospice Working with Dying Patients

Summary Case Studies

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Test Your Knowledge References

Chapter 5 Health Literacy and Clear Communication: Keys to Engaging Older Adults and Their Families

Audrey Riffenburgh, PhD Sue Stableford, MPH, MSB

A Patient's Experience of Health Communication Understanding and Using Health Care: Why Older

Adults Often Struggle Health Literacy Challenges Organizational Barriers Individual Factors

Literacy, Numeracy, and Health Literacy Challenges Literacy Numeracy

Impacts of Literacy and Health Literacy Skills: Two Major Keys to Good Health

The Impact of National Policies on Health Literacy Practice

Accrediting, Standard Setting, and Policy Organizations

Federal Government Agencies The Business and Legal Case for Health Literacy Clear Health Communication: An Often Overlooked

Necessity What Is Plain Language? How Will I Know It If I Hear

It? What Is Plain Language? How Will I Know it if I See

it? A Call to Action Case Studies Test Your Knowledge

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References

Chapter 6 Policy Issues for Older Adults

Laney Bruner Canhoto, PhD, MSW, MPH

Introduction Policy Overview

The Ever-Evolving Nature of Policy Historical Perspectives on Elder Policy

Policy Issues Income Policies Healthcare Policies Older Adults and Disabilities Policies Long-Term Services and Supports

Summary Case Studies Test Your Knowledge Resources References

Chapter 7 The Physiology and Pathology of Aging

Kimberly Wilson, DNP, RN

Introduction Theories of Aging

Programmed Theories of Aging Environmental Theories of Aging

Physiological Changes of Aging Cardiovascular System Respiratory System Gastrointestinal System Genitourinary System Musculoskeletal System Nervous System

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Endocrine System Immune System Integumentary System Sensory Organs

Summary Case Studies Test Your Knowledge References

Chapter 8 Cognitive and Psychological Changes Related to Aging

Regula H. Robnett, PhD, OTR/L, FAOTA

Introduction Typical Cognitive Changes of Aging

Typical Cognition Overview Crystallized and Fluid Intelligence Processing Speed Learning in Late Life Specific Factors Impacting Cognition Specific Aspects of Cognition Assessing Cognition Interventions to Maintain or Enhance Cognition in

Older Adults The PACES Program to Promote Brain Health

Atypical Changes of Cognitive Aging Risk Factors for Cognitive Decline Minor Neurocognitive Disorders (Mild Cognitive

Impairment [MCI]) Overview of DSM-V Major Neurocognitive

Disorders Working with Persons Who Have Major NCD Comparing Dementia with Depression and

Delirium Related Potentially Reversible Disorders

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Personality Development Five-Factor Model of Personality Personality Summary Behavior Change

Summary Case Studies Test Your Knowledge References

Chapter 9 Functional Performance in Later Life: Basic Sensory, Perceptual, and Physical Changes Associated with Aging

Jessica J. Bolduc, DrOT, MS, OTR/L

Introduction Vision

Visual Perception Hearing Smell Taste Physical Changes

Range of Motion Strength Endurance Physical Exercise Praxis

Physical Performance Reaction Time Motor Coordination

Work Performance Sleep

Normal Sleep Impact of Sleep on Older Adults

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Sleep Disorders Treatment of Sleep Disorders

Summary Case Studies Test Your Knowledge References

Chapter 10 Drugs and the Older Adult

David J. Mokler, PhD

Introduction Pharmacokinetics

Drug Absorption Drug Distribution Drug Metabolism Drug Excretion

Pharmacodynamics Pharmacogenomics Anticholinergic Syndrome

Other Syndromes Drug Dependence, Misuse, and Addiction Beers List and Stopp/Start Herbal Medicines and Supplements Polypharmacy Summary Case Studies Test Your Knowledge References

Chapter 11 Nutrition and Aging

Kathryn H. Thompson, PhD, RD

Introduction

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Screening The Nutrition Screening Initiative Undernutrition: Weight and Malnutrition

Treatment of Weight Loss and Other Nutritional Problems Related to Aging

Weight Loss Treatment of Gastrointestinal Problems Overnutrition Cardiovascular Disease Diabetes

General Nutrition Recommendations Drug and Nutrient Interactions

Alcohol Summary Case Studies Test Your Knowledge References

Chapter 12 Perspectives on Oral Care in Healthy Aging and Prevention for the Older Adult

Marji Harmer-Beem, RDH, MS

Introduction Oral Health in America: A Report of the Surgeon

General Oral Structures and Chronic Oral Diseases

Separating Oral Aging from Disease Recognizing Barriers to Care The Interprofessional Role in Oral Care and Prevention

Prevention Simple Oral Screening

New Models of Care Summary

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Case Studies Test Your Knowledge References

Chapter 13 Sexuality and Aging

Nancy MacRae, MS, OTR/L, FAOTA

Introduction Sex and Sexuality Aging and Sexuality Intimacy Physiologic Changes in Sexual Functioning

Women Men

Gender Differences Raising the Subject of Sexual Functioning Assessing and Addressing Sexual Functioning

Sexual Functioning and Health Problems Medication Effects Inappropriate Sexual Behaviors Toward Practitioners Special Populations

Older Lesbians and Gay Males Transgender Adults Adults with Physical Disabilities

Adults Living in Institutions Adults Infected with HIV Summary Case Studies Test Your Knowledge References

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Chapter 14 Reframing Aging Issues to Ensure a Better Future

Raven H. Weaver, PhD

Aging: A Global Perspective Aging as a Social Enterprise

Structural Inequalities Socioeconomic Security Health Inequalities

Aging as a Family Affair Family Caregiving Formal Caregiving

Aging as an Individual Experience Self-Perceptions and Attitudes Health Behaviors

Aging and the Healthcare Workforce Responsibilities of Healthcare Professionals

Summary Case Studies Test Your Knowledge References

Epilogue Answers to Review Questions Glossary Index

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Introduction

hank you for choosing to open this textbook and read this page. Gerontology for the Health Care Professional, Fourth Edition is designed with you in mind. Our goal is

to provide a textbook that is reader-friendly and includes information that easily translates to healthcare practices.

As you read each chapter, we encourage you to consider the interprofessional roles of each of the healthcare professions listed below. While this is not an exclusive list and, most of the time, only a small portion of all the possible professions will actually be involved in working with any given client, we encourage you to think about how each profession could be involved and when a consultation or referral would be in order. You may need to investigate some of the following professions to familiarize yourself with their roles and further research is certainly encouraged.

The most prominent healthcare professionals involved in gerontological care are:

Alternative Medicine Practitioners Art Therapists Athletic Trainers Audiologists Cardiovascular Technologists Case Managers Counselors

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Dental Practitioners Dieticians/Nutritionists Emergency Medical Practitioners Gerontologists Horticulture Therapists Imaging Technologists Massage Therapists Medical Laboratory Practitioners Medical Records Health Information Specialists Music Therapists Neuropsychologists Nursing Practitioners Occupational Therapy Practitioners Orientation and Mobility Specialists (low vision) Orthotists Physical Therapy Practitioners Physician Assistants Physicians Polysomnographers Prosthetists Psychiatrists Psychologists Radiological Technologists Recreation Therapists Rehabilitation Teachers (low vision) Respiratory Therapists Social Workers Speech and Language Pathologists Visual Care Specialists

We are fortunate to be living in an information-rich age in which Internet resources are readily available as never before. Certainly not everything available online can be relied upon, and therefore we need to read what is out there in cyberspace with critical and questioning eyes. However, for individuals who want to learn, the floodgates have opened and the world of information is there for the learning.

▶ How This Text Is Organized

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The Fourth Edition begins with chapters on the social, psychological, and biological aspects of aging, including:

Demographics (Chapter 1) Social Relationships and Roles (Chapter 2) Community Living (Chapter 3) End of Life (Chapter 4) Communication (Chapter 5) Policy (Chapter 6) Physiology (Chapter 7) Cognition and Psychology (Chapter 8)

Later chapters explore issues that, although not exclusive to older people, are of primary importance to the older population. These issues include:

Functional Performance (Chapter 9) Drugs (Chapter 10) Nutrition (Chapter 11) Oral Health (Chapter 12) Sexuality (Chapter 13) Future of Aging (Chapter 14)

▶ What Is New to the Fourth Edition NEW! Now in FULL color with a new and expanded art program! REVISED! Chapter 1 on demographics of aging offers more information about aging worldwide and the factors that contribute to a growing worldwide population. REVISED! Chapter 2 on social gerontology includes an expanded section on elder abuse. REVISED! Chapter 3 on community living has been expanded to include more information on aging in place and the continuum of care. NEW! New Chapter 4 on Loss, Grief, Death, and Dying. REVISED! Chapter 13 on sex and gender issues has been revised to reflect the lives of the LGBTQ community and other hidden populations. REVISED! Chapter 14 on the future of aging examines

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aging issues using community, family, and individual perspectives. NEW AND REVISED! Case Studies have been revised and additional ones added so there are two per chapter. UPDATED DATA! All information is updated to reflect current census data and statistics.

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How to Use This Text

Gerontology for the Health Care Professional, Fourth Edition incorporates a number of engaging pedagogical features to aid in the student's understanding and retention of the material.

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▶ Instructor Resources Qualified instructors will receive a full suite of instructor resources, including:

More than 250 slides in PowerPoint format A test bank with chapter-by-chapter questions along with midterm and final tests

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Case studies along with potential answers An Instructor's Manual containing a summary, key terms and definitions, teaching tips, and a list of material and online resources

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About the Authors

Regula H. Robnett, PhD, OTR/L, FAOTA Professor Department of Occupational Therapy University of New England Portland, Maine

Regi Robnett has 27 years of experience as an occupational therapist and over 30 years of experience working with older people in various capacities. She has worked at the University of New England for 22 years. Regi holds a PhD in Gerontology from the University of Massachusetts, Boston. She teaches courses in the biopsychosocial dimensions of older adults, communication, culture, and group process as well as research (often incorporating older adults and their concerns) and mental health. Regi enjoys doing community work to benefit older adults, often with her students.

Nancy Brossoie, PhD Senior Research Scientist Center for Gerontology Virginia Tech Blacksburg, Virginia

Nancy Brossoie is a senior research faculty member in behavioral and social science. Her primary research interests include aging in place, age-friendly communities, substance

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misuse in late life, and building community capacity to meet the needs of vulnerable populations. Nancy's expertise is informed by 17 years supervising home and community-based service delivery, evaluating programs and services at the state and community levels, and developing strategic plan initiatives for hospital systems, long-term care organizations, and mental health agencies.

Walter C. Chop, MS, RRT Professor Emeritus Respiratory Therapy Department Southern Maine Community College Portland, Maine

Walter Chop served as chair and professor in the Respiratory Therapy Department, Southern Maine Community College, for over 29 years. During his tenure at the college, he has also served as chair of Allied Health Sciences for 22 years. He has written numerous articles on both gerontology and respiratory care. For the past 10 years, he has been a member of the American Association for Respiratory Care Gerontology Committee.

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Acknowledgments

t takes many individuals to create the final product that becomes a textbook. We thank everyone who has contributed to the process that has made the Fourth Edition of Gerontology for the Health Care Professional possible.

Specifically,

All the contributing authors whose hard work and dedication created the substance of this text: Jessica Bolduc, Ann O'Sullivan, Sue Stableford, Marji Harmer-Beem, Kathryn Thompson, Nancy MacRae, Laney Bruner Canhoto, Audrey Riffenburgh, Kimberly Wilson, David Mokler, and Raven Weaver. All the good people at Jones & Bartlett Learning, especially Cathy Esperti, Rachael Souza, Juna Abrams, Robert Boder, Troy Liston, and Sameer Jena. Our loving families, whose ongoing support and encouragement kept us going.

If we inadvertently left anyone out, we ask for your forgiveness.

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Contributors

Jessica J. Bolduc, DrOT, MS, OTR/L Staff Occupational Therapist, Mercy Hospital Adjunct Faculty, University of New England Portland, Maine

Laney Bruner Canhoto, PhD, MSW, MPH Assistant Professor Family Medicine and Community Health University of Massachusetts Medical School Worcester, Massachusetts

Marji Harmer-Beem, RDH, MS Associate Professor Dental Hygiene Program University of New England Portland, Maine

Nancy MacRae, MS, OTR/L, FAOTA Associate Professor Occupational Therapy Department University of New England Portland, Maine

David J. Mokler, PhD Professor of Pharmacology and Chair Department of Biomedical Sciences

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College of Osteopathic Medicine University of New England Biddeford, Maine

Ann O'Sullivan, OTR/L, LSW, FAOTA Trainer and Consultant Scarborough, Maine

Audrey Riffenburgh, PhD President, Plain Language Works, LLC Founding Member, Clear Language Group Albuquerque, New Mexico

Sue Stableford, MPH, MSB Consultant and Trainer Health Literacy, Plain Language, & Clear Health Communication

Kathryn H. Thompson, PhD, RD Professor University of New England College of Osteopathic Medicine Biddeford, Maine

Kimberly Wilson, DNP, RN Program Director of Accelerated Bachelor of Science in Nursing (ABSN) Assistant Professor Jefferson College of Health Sciences Roanoke, Virginia

Raven H. Weaver, PhD Assistant Professor Washington State University Pullman, Washington

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Reviewers

Keciana Enaohwo, MS, MA, CHW-I Houston Community College Houston, Texas

Laura M. Horn, MEd, RD, LD Professor Cincinnati State Technical and Community College Cincinnati, Ohio

Karen L. Madsen, FNP-BC Assistant Professor Missouri Southern State University Joplin, Missouri

Susan C. Maloney, PhD, CRNP, FNP-BC Assistant Professor Edinboro University Edinboro, Pennsylvania

Audrey McCrary-Quarles, PhD Associate Professor South Carolina State University Orangeburg, South Carolina

Cindy Meyer, MEd, MSCPM, OTR/L, OTA/Retired OTA Program Director

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South Arkansas Community College El Dorado, Arkansas

Margaret H. Teaford, PhD Associate Professor Emeritia Ohio State University Columbus, Ohio

Linda J. Tsoumas, PT, MS, EdD Professor of Physical Therapy MCPHS University Worcester, Massachusetts

Ann Marie Zvorsky, MSN, RN, CNE Medical-Surgical Nursing Instructor The Joseph F. McCloskey School of Nursing at Schuylkill Health Pottsville, Pennsylvania

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CHAPTER 1 Age Matters: Profiles of an Aging Society Nancy Brossoie, PhD Regula H. Robnett, PhD, OTR/L, FAOTA Walter C. Chop, MS, RRT

CHAPTER OUTLINE

INTRODUCTION

GLOBAL AGING Age, Sex, and Distribution Fertility Rates Longevity

Population Health Migration

AGING IN THE UNITED STATES Age and Age Groups Geographic Distribution

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Sex Race Marital Status Living Arrangements

ECONOMIC STATUS Poverty Income Sources of Income

WORK AND RETIREMENT STATUS

HEALTH STATUS Chronic Health Conditions Functional Limitations Vaccinations Self-Rated Health

CAREGIVERS Long-Term Care Services

DEATH Causes

AGING SUCCESSFULLY Successful Aging Quality of Life in Old Age

Life Satisfaction Well-being

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Explain terms used to describe and classify age. 2. Describe how populations are aging around the world. 3. Explain the difference between the terms lifespan and

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longevity. 4. Describe three key factors that influence population

aging. 5. Describe the general characteristics of the U.S.

population of adults age 65 years and older. 6. Describe the most common chronic health conditions

among older adults. 7. Explain the types of services provided by formal and

informal caregivers. 8. Identify the most common causes of death among older

adults. 9. Discuss the impacts the U.S. baby boom generation is

having on U.S. society. 10. Explain how marital status, income level, sex, and race

can affect quality of life.

KEY TERMS

Activities of daily living Baby boom generation Biopsychosocial Centenarian Chronological age Formal caregivers Functional age Gerontology Incidence Informal caregivers Instrumental activities of daily living Life expectancy Lifespan Longevity Old Old-old Prevalence Quality of life

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Snowbirds Successful aging Super-centenarian Total fertility rate Young-old

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▶ Introduction We all start to age from the moment we are born. Aging is a lifespan process that influences every aspect of our lives. Yet, many people do not think about growing older or the issues that accompany growing older until they see their parents' health decline or experience health challenges of their own. The field of gerontology is the study of aging and age-related issues and the biological, sociological, and psychological (biopsychosocial) factors that influence aging and old age. As a heath care professional, you will need to have a basic grasp of aging and age-related issues, which this text attempts to provide.

The first step to learning about issues that influence and affect old age is to consider what the term “old age” implies. Old age is a subjective concept that can change over time and depends on cultural and social considerations. What we thought of as old in the 19th century is considered middle age now. What we considered old when we were 15, will vary greatly from when we are 40 or even 75!

Researchers define age in ways that help them study age in their fields of interest. Public health and health policy leaders rely on defining old age by chronological age (i.e., the length of time a person is alive) to inform policy and programs. Countries, including the United States use ages 60, 62, or 65 as benchmark ages or age eligibility thresholds for policies that affect older adults. Health scientists find functional age (i.e., the level at which a person can perform) is more useful than chronological age in determining an individual's health status. Social scientists often group older adults into age groups (e.g., ages 50–64, 65– 74, 75–84, and 85+) that reflect similar life experiences and obligations, historical memories, and health problems within each group. Similarly, some researchers may apply terms to age groupings such as young-old (i.e., 50–64), old (i.e., 65–84), and old-old or oldest of old (ages 85 and older) to describe the stage of members in very late life. Within the old-old age group are two well-studied sub-groups—centenarians (i.e., persons at

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least 100 years old) and super-centenarians (i.e., persons at least 110 years old). How and why centenarians have been able to reach old age continues to be of great interest to scientists.

Whatever classification for age you choose to use in your work is a matter of preference, as long as you realize the limitations and variations implied by the term. A salient point to note and what is stressed throughout this text, is that there is a great amount of variability among older adults. Older adults are a heterogeneous group. Some individuals retain a sound mind and body into late life, while other persons do not. Some people remain financially secure, while other individuals fall into poverty. While the aging process is not a one-size fits all experience, the fundamental processes are shared by all.

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▶ Global Aging Age, Sex, and Distribution The world population is growing larger and getting older every year. The United Nations Department of Economic and Social Affairs (2017) reported that by mid-2017, the world population exceeded 7.5 billion people, an increase of 1 billion people since 2002. There are slightly more males than females (i.e., 102 males per 100 females) worldwide and they are distributed relatively equally across age groups as illustrated in FIGURE 1-1. As a group, females tend to live longer than males, explaining less decline in group size later in life. The median age (i.e., the age in which half of the population is above and below) of the entire world population is 30 years, which is also illustrated by the width of the age group bars in Figure 1-1.

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FIGURE 1-1 Worldwide population by sex and age group. Reproduced from The World Factbook 2017. Washington, DC: Central Intelligence Agency,

2017. www.cia.gov/library/publications/the-world-factbook/index.htm.

Worldwide population growth is expected to remain steady as the population increases by approximately 83 million people each year. TABLE 1-1 includes estimates for total population growth in 2030, 2050, and 2100 as well as population data by world region.

TABLE 1-1 Population of World and Population by Region, 2017

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Data from United Nations, Department of Economic and Social Affairs. (2017). World

Population Prospects: The 2017 Revision, Key Findings and Advance Tables. Working

Paper No. ESA/P/WP/248.

Conversations about world population can be more effective if the world is discussed by geographic regions, such as Africa, Asia, Europe, Latin America and the Caribbean, Northern America, and Oceania. Even though the governments and policies of countries within a single region may differ, their geographic location unites them by shared and common resources, climate, lifestyles, and cultures.

As shown in TABLE 1-2, 60% of the world population lives in Asia (4.5 billion). China and India are the most populated countries in the entire world and account for 90% of Asia's population. Within Asia, adults age 25–59 represent nearly half (48%) of the region's population (see Table 1-2). The second largest populated world region is Africa and it contains 17% of the world population (1.25 billion). Africa's population is relatively young with 40% of the population age 0–14 years. Only 5% of Africa's population is age 60+ years. Conversely, Europe (the third largest populated region) is the “oldest” region with 25% of its population representing adults age 60+ years and 16% of its population age 0–14 years. The population in Latin America and the Caribbean (646 million) is slightly less than Europe (742 million people), but one quarter of its

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population (25%) are 0–14 years old and it is home to half as many older adults (12%). Northern America, which includes the United States, ranks 5th in population size among regions and includes 361 million people. Only 22% of the North America population is 60+ years old. The least populated region is Oceania, which is home to 41 million people; 17% of whom are age 60+ years.

TABLE 1-2 World Population and Population by Age Groups and Region, 2017

Data from United Nations, Department of Economic and Social Affairs. (2017). World

Population Prospects: The 2017 Revision, Key Findings and Advance Tables. Working

Paper No. ESA/P/WP/248.

The population differences by region illustrate the fact that population size alone does not predict the age composition of a population. Instead, demographers look to three key and interrelated factors: fertility rate, longevity, and migration.

Fertility Rates The number of older adults in the world today is directly connected to the total fertility rate (TFR; i.e., the average number of live births a child-bearing women would have in her lifetime) at the time they were born. In the 1950s, the TFR in the

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regions of Africa, Asia, Latin American and the Caribbean was approximately five live births per woman, a veritable population explosion when compared to Europe's TFR, which was less than three lives births per woman during the same years. Consequently, countries that experienced a high TFR in the mid- 20th century are now faced with a growing economically inactive (i.e., retired or not working) older population that needs to be supported. Countries that experienced a low TFR at the same time, now tout a smaller aging population and are likely to be in a better position to provide members with economic and physical support.

War can dramatically impact TFR. During wartime, live births decrease because men and women are sent away from home to fight. However, post-war economies often generate socioeconomic growth that supports marriages, births, and an increased TFR. After World War II, the TFR skyrocketed in the United States and the large number of babies born between 1946 and 1964 have been subsequently referred to as members of the baby boom generation. Like the United States, South Korea also had a baby boom that is now entering old age. However, the years of birth for Korea's baby boomers (1955–1963) began with the end of the Korean War and not World War II (Howe, Jackson, & Nakashima, 2007).

By tracking fertility rates in a region, policy makers and service providers can better predict the needs of a population and prepare for change. When countries experience sudden changes in fertility rates, it dramatically affects the population balance. For example, South Korea is the fastest growing aging society. It doubled its aging population from 7% (1999) to 14% (2017) in just 18 years and it continues to rise at a rapid rate (Klassen, 2010). Perhaps more troublesome is that the TFR in South Korea is the lowest in the world at 1.25; meaning that the population is barely able to replace people who die (referred to as the fertility replacement rate). Declining birth rates are expected to dramatically impact the size and productivity of the South Korean labor force and the national economy. Simply put, when older adults stop working, there will be few workers to replace them. One fear is if South Korean industry leaders are faced with a decreasing labor pool, they may seek laborers and

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manufacturing deals in neighboring countries, further reducing the nation's productivity. Moreover, the South Korean government faces challenges in meeting increased healthcare costs and the need to develop a system of services and supports to address the needs of the growing older population.

In 2017, the country with the oldest population was Japan. One-third (33%) of its residents were age 60+. Japan was closely followed by Italy, (29%), Germany (28%), and Portugal (28%). Each of these countries also represents developed societies (i.e., high socioeconomic development) that boast high gross domestic products (GDP; i.e., the value of everything produced in a country) per capita (i.e., per person). By maintaining a high GDP, a country is better positioned to access, maintain, and provide resources, economic trade, and opportunities, which contribute to population health and longevity (i.e., the length of time lived).

Still, GDP ranking is not enough to predict if a county has a large aging population. In 2017, the top five developed countries with the highest GDP per capita included the small governments of Qatar, Luxembourg, Macao, Singapore, and Brunei. The total populations of these countries were significantly different: 2.2 million, 590 thousand, 650 thousand, 5.6 million, and 423 thousand residents, respectively. Moreover, the percentage of the population aged 60+ in each country also varied considerably, ranging from 3% to 20%. Thus, wealth is also not a predictor for identifying if a country has a large population of older adults, even if that wealth can help provide services and products that promote longevity.

Longevity Maintaining a healthy population across the lifespan (i.e., the period from birth to death) is directly influenced by access to health care (including pre-natal care), public sanitation, a well- balanced diet, education, and safe and secure communities. Life expectancy (i.e., the length of time a person is expected to live) is further influenced by the historical time in which a person lives, environment factors such as air and water quality, and any social and behavioral factors that affects the population such as smoking, obesity, homicide, and war.

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Worldwide, life expectancy at birth is currently 70.8 years, an increase from 67.2 years since 2000. The greatest increases across world regions have occurred in Africa, which showed an increase of 6.6 years in the same period, after increasing less than 2 years in the prior decade. Despite the rapid increase, life expectancy in Africa is now just 60.2 years. The highest life expectancy is in Northern America (79.2 years) followed by Oceania (77.9 years), Europe (77.2 years), Latin America and the Caribbean (74.6 years) and Asia (71.8 years). When comparing population size with life expectancy, it become clear that population size alone does not translate to higher life expectancy. Clearly, other factors are at play. Population Health

Obesity is becoming an epidemic health concern throughout the world with proportional increases in weight across all age groups and educational levels (Samper-Ternent & Al Snih, 2012). According to the World Health Organization (2017), the prevalence of obesity has tripled worldwide from 1975 to 2016, and is responsible for the deaths of at least 2.8 million people annually. The U.S. population leads the world in obesity for both men and women (FIGURE 1-2). By 2015, residents 50– 74 years old had significantly poorer health with multiple health conditions compared to their British and European counterparts including hypertension, heart disease, diabetes, cancer, lung disease, and mobility impairments (National Institute on Aging, National Institutes of Health, & World Health Organization [2011]).

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FIGURE 1-2 Obesity rates by country, 2015 or nearest year. Data from OECD. (2017). Obesity update 2017. OECD Health Statistics. Retrieved from

www.oecd.org/els/health-systems/Obesity-Update-2017.pdf.

Since the 1980s, HIV/AIDS has been a worldwide health concern that is often overlooked in association with older adults.

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Human immunodeficiency virus (HIV) is a virus, which once acquired can be treated, but cannot be eradicated from the body. If left untreated, HIV can develop into acquired immunodeficiency syndrome (AIDS). Antiviral therapies (ART) have improved dramatically in effectiveness and can now control HIV so that it does not develop into AIDS. Persons affected can live long, relatively healthy lives with the virus largely under control (Centers for Disease Control and Prevention, 2017). About half of persons infected are already older than age 50 (Mills, Bärnighausen, & Negin, 2012). Undeveloped countries have not fared as well, especially sub- Sahara African countries where the prevalence of HIV among persons age 50+ is expected to exceed 10% by 2025. Moreover, persons over age 50 with HIV and receiving ART, still have a 30% higher risk of dying within 4 years compared to younger patients.

To combat population health problems, Mills et al. (2012) suggest that the world needs more geriatric clinicians. They are few in number in the United States and absent in many regions of the world. Training needs to include better geriatric training, improved rehabilitation services, and prevention outreach services to improve older peoples' ability to avoid disease and cope living with their health problems.

Migration In addition to fertility rates and life expectancy, population size is influenced by migration patterns. In peaceful times, immigrants enter a country to gain education, engage in business, or to live with family members who have already relocated. Most countries have processes and procedures in place to regulate this form of immigration. Some immigrants stay for short periods of time, while others seek and obtain citizenship. A challenge for any society is when residents of a war-torn country or a country undergoing political unrest, want to leave and make their home in a neighboring country, as has been the case with Syrian refugees. As of 2015, an estimated 4.2 million people have fled the civil conflict in Syria and 2.2 million have settled in Turkey (Tumen, 2016). More often than not, immigrants are young adults with young families or with

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the intention of sending for them after getting settled. The persons left behind are people least able to support themselves and their communities such as women and children, older adults, poor people, and persons with disabilities.

The effect of mass migration on the departure and arrival countries can be staggering. Mass migration of a population places a strain on local and national economies, social services, housing, education, public health, and sanitation. In countries receiving large numbers of immigrants, the economy is unlikely to have job openings for all the new arrivals, resulting in increased enrollments in the public welfare system. In the country left behind, the future is also not bright for the persons who remained. The workers who used to support the economy and pay taxes to support community infrastructure (e.g., roads, hospitals, schools, and health care) are no longer contributing. The transactions of goods and services may stop. Older adults, who once depended on a state pension, may suddenly have no income. Without a large infusion of capital and manpower, many communities left behind after war and conflict simply fall apart and the population becomes impoverished and left with little hope for a better future.

Recognizing the influences on population size and health is needed to understand what it takes for people to age successfully. Gerontologists use population information as a guide to explore what it takes to provide a quality of life at the individual, societal, national, and global levels. A brief discussion about successful aging and quality of life is at the end of this chapter.

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▶ Aging in the United States Age and Age Groups The U.S. Census Bureau estimated that the national population in 2016 was slightly more than 323 million people (Federal Interagency Forum on Aging-Related Statistics, 2016). The median age in the United States was 37.9 years, seven years higher than the world population median age. Among the 50 states, Maine had the oldest population with a median age of 44.5 years, while Utah had the youngest populations with a median age of 30.7 years (Statista, 2017). The average life expectancy in the United States for both sexes in 2016 was 78.8 years.

In 2016, adults age 65 and older made up 15.2% of the population, an increase of 0.3% from the previous year. As aforementioned, members of the baby boom generation were born from 1946 to 1964 and include approximately 76 million people. The individuals born in 1946 started turning age 65 in 2011. Since then, approximately 10,000 adults turn age 65 each day until 2029. Therefore, it is important to any analysis of the older population to include members born in all years of the baby boom generation, even if they have yet to reach age 65, as the sheer number of adults reaching old age will impact social policy and services.

In 2016, the percentage of adults by age breakdown was as follows:

Age 45–54 (13.3%) Age 55–64 (12.8%) Age 65–74 (8.9%) Age 75–84 (4.4%) Age 85+ (1.9%)

Geographic Distribution Older adults live in communities all across the United States. Some individuals live in the same towns where they were born

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and raised, and other individuals relocate several times during their lives, even in late life. Not surprisingly, where the older population resides in the United States is heavily influenced by the economy, health, and weather.

The outmigration of young adults due to poor job and economic prospects has left some regions with increased numbers of older adults. When industries fold and are not replaced with new industries drawing on the same labor force, individuals tend to seek work in other regions thus, leaving the non-active workforce behind. The density of older populations in post-industrial areas, such as Appalachia and the Midwest shown in FIGURE 1-3, help emphasize the effect of outmigration.

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FIGURE 1-3 Percentage of population age 65+ by county and state in the United States in 2014.

Data from U.S. Census Bureau, Annual Estimates of the Resident Population for Selected

Age Groups by Sex for the United States, States, Counties, and Puerto Rico Commonwealth

and Municipios: April 1, 2010, to July 1, 2014 (PEPAGESEX).

Older adults who migrate to new regions in the country, generally do so after retiring from the workforce. The pull of a new community is generally tied to several factors: a lower cost of living than the pre-retirement community, warmer and drier climate, and proximity to friends and family. As can be seen in Figure 1-3, the warmer climes of Florida, Arizona, and southern Utah draw older persons and thus, have dense older populations. Florida has long been known for its older demographic. Eighty percent of Florida counties (i.e., 53 of 67) have an above average proportion of older adults. In Sumter County more than half of its residents are reportedly age 65+. In 2010, the southern regions of the U.S., had the largest number of individuals over age 65 whereas the northeast had the largest proportion of persons over age 65 (Statista, 2017).

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However, not all persons relocate permanently to warmer states. The term snowbirds refers to older adults who move south for the winter to avoid the cold weather at home and all the heating bills and snow removal that accompany living in the cold. Many snowbirds make the trek south for a few years before settling down permanently in the south, while other snowbirds only want it to be an annual winter trip.

Sex In contrast to the world population composition, in 2016, there were more females than males in the total U.S. population (i.e., 100 females per 96.9 males, or 50.8% females to 49.2% males). The gap widened between the sexes by age 65 with even fewer males (44.1%) than females (55.9%). Historically, this difference has been attributed to better health and health care among females, although with the rise in obesity, heart disease, and tobacco use in females, the gap has narrowed.

Race The racial diversity of the older population in the United States is less diverse than that of the entire population and the younger population. Older adults are predominately White (78%) and non-Hispanic (92%). Only 9% of older adults are Black and 4% are Asian. This can be explained in part by the fact that the immigration rates of non-White and Hispanic populations into the United States were much lower when today's older adults were young, and today's older immigrants of color are not numerous enough to influence the national data. It is also important to remember that interracial marriages were illegal at the time many of today's older adults were getting married, so they were unlikely to marry outside of their race. The racial profile of older adults in 2014 is illustrated in FIGURE 1-4.

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FIGURE 1-4 Older U.S. population by race and Hispanic origin. Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans 2016: Key

Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics.

Washington, DC: U.S. Government Printing Office.

Marital Status An important influence on quality of life and well-being are social relationships, including marriage. Because there are more women than men and women tend to live longer than men, it stands to reason that a higher percentage of older men are married than older women. In 2015, among adults age 65–74 years, about 74% of men were married although only 58% of women of the same age were married. The increased rate of married men continues across age groups (FIGURE 1-5). Not surprisingly, more women than men were widowed. Seventy- three percent of women age 85+ years were widowed compared to 34% of men of the same age. What remains relatively consistent across age groups and sex are the rates of never married adults (3–6%) and divorced adults (6–17%). At the time of this writing, there is no reliable national relationship data on same sex marriages or partnerships among older adults.

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FIGURE 1-5 Marital status of older adults in the United States by sex

and age group, 2015. Description

Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans 2016: Key

Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics.

Washington, DC: U.S. Government Printing Office.

Living Arrangements One's living arrangement can also have a significant impact on health, quality of life and well-being. In 2015, 70% of men lived with a spouse yet, only 45% of women lived with a spouse. Expectedly, women were more apt to live alone (36%) than were men (20%). However, the trend for living alone has begun to decline after a fivefold increase (6–29%) from 1900 to 1990 (Stepler, 2016). Older persons of color are more apt to live alone than older White adults. Specifically, 46% of older Black women lived alone, and older Black men live alone three times more often than older Asian men. However, older men of color were more apt to live with relatives than their White counterparts. Approximately 14% of Black and Hispanic men of color lived with a relative other than a spouse compared to only 4% of While men doing the same. Older people living alone are three times as likely to live in poverty and less likely to view their economic status as “living comfortably” (Stepler, 2016).

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Back to Figure Bar graph shows marital status (never married,

divorced, widowed, married) for men and women from age 65. Values

are in percentages.

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▶ Economic Status Poverty The economic status of older Americans is more varied than any other age group. Poverty among older adults was such a serious problem by the mid-20th century that in 1964 it was integrated into President Lyndon B. Johnson's War on Poverty legislation. This led to federal implementation of the Older Americans Act in 1965 in an effort to lift older citizens out of poverty. In 1966, 29% of people age 65+ years lived below the federal poverty threshold and 18% of children were deemed impoverished. By 2014, the rate for older adults in poverty dropped to 10–12% (depending on the measure used), although the rate for children has hovered around 20% (FIGURE 1-6).

FIGURE 1-6 Poverty rates in United States over time. Semega, J. L., Fontenot, K. R., & Kollar, M. A. (2017). Income and poverty in the United

States: 2016. Report Number: P60-259. Washington, DC: U.S. Government Printing Office.

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Poverty in late life is experienced differently by gender, age, and race. Not only are older women likely to live alone, they are more apt to live alone in poverty (12%). Moreover, as time passes, the chances of an older adult becoming impoverished increases. In 2014, the overall poverty rate for adults age 65+ years was 9%, compared to 12% of adults ages 75 and older experiencing poverty.

Persons of color experience greater rates of poverty than White men (5%) and women (10%). In 2014, older Black men, Hispanic men, and Asian men experienced poverty rates of 17%, 16%, and 13%, respectively. Yet, older women of color still experience the highest rates of poverty in late life. Older Black women (21%) and Hispanic women (20%) are four times as likely to be in poverty as older White men and twice as likely as older White women. Older Asian women (16%) experience poverty at nearly the same rate as Asian men yet, their rate is still triple the rate of older White men. Lifting older adults out of poverty is connected to the provision of need-based supplementary programs and services, discussed further in Chapter 6.

Income Personal and household incomes of older adults are as diverse as they are among younger people. Due to many economic factors, the median income of older adults has risen in the past 40 years. In 1974 median income was reportedly $22,921 (in 2014 dollars) and by 2014, it reached $36,895. As FIGURE 1-7 illustrates, the distribution of wealth among older adults is diverse. Using the federal poverty level as an income baseline, low income adults are identified as receiving income 100–199% above the poverty level, middle income adults receive 200– 399% above the poverty level, and high income older adults receive income at least 400% above the poverty level.

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FIGURE 1-7 Income distribution in the United States among older adults, 1974–2014.

Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans 2016: Key

Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics.

Washington, DC: U.S. Government Printing Office.

Sources of Income Variation in income size is reflective of the sources of income (e.g., personal savings, investments, retirement pensions, and Social Security). In 2014, nearly half (49%) of all households (including 86% of all older adults) received Social Security (i.e., an entitlement program that workers pay into and draw from upon leaving the workforce; see Chapter 6). By age 80, 90% of older adults receive Social Security. Less than half (41%) of older adults received income from a private retirement pension or annuity, and only 18% received income from a public pension fund. Selling or cashing in personal assets also provides a source of income and more than two thirds (67%) of older adults receive income from their assets. Conversely, 13% of older adults had little to no assets to draw upon and received public assistance (i.e., cash and non-cash) to supplement their income.

FIGURE 1-8 displays a chart comparing the sources of income by dividing the older population into quintiles (i.e., five graduated income categories with equal numbers of adults in each). The visual helps demystify the sources older adults rely upon for their incomes. Clearly, individuals with lower incomes

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rely more on Social Security than persons in the higher income groups.

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FIGURE 1-8 Percentile distribution of per capita family income for persons age 65+, by income quintile and source of income, 2014.

Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans 2016: Key

Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics.

Washington, DC: U.S. Government Printing Office.

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▶ Work and Retirement Status Not all older adults leave the labor force once they reach age 65 or retire. Continued employment in some form can provide additional income, opportunities for socialization, and feelings of self-worth and contribution, which all contribute to improving quality of life and well-being. Approximately 29% of older adults have no retirement savings or pension plan (United States Government Accountability Office, 2015), which forces many people to continue to be active in the workforce. As illustrated in FIGURE 1-9, rate of participation of older adults in the workforce is expected to rise, whatever the reason.

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FIGURE 1-9 Percentage of older employed population age 60+. Data from Burtless, G. (2013). The impact of population aging and delayed retirement on

workforce productivity. (CRR WP 2-13-11). Chestnut Hill, MA: Center for Retirement

Research.

Although finances are a leading factor for returning to or remaining in the labor force, other reasons cited for continuing to work included: boredom or extra time to engage, sought out by employer to train or mentor younger workers, and personal enjoyment and fulfillment (Tamburo, 2017). Additional information on work and retirement is presented in Chapter 2.

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▶ Health Status The health of older Americans is frequently discussed in terms of the incidence (i.e., the number of new cases reported) and prevalence (i.e., the total number of cases reported) of chronic health conditions and communicable diseases, functional limitations, vaccination rates, and self-reported health status.

Chronic Health Conditions Chronic health conditions, such as heart disease, stroke, cancer, diabetes, and arthritis, are among the most costly health conditions to treat. Moreover, they are preventable if an individual commits to change the behaviors that lead to the condition. Multiple chronic health conditions are experienced by the majority of older adults; co-morbid conditions (i.e., multiple conditions at the same time) directly contribute to frailty and disability (FIGURE 1-10).

FIGURE 1-10 Percentage of people age 65+ who reported selected chronic conditions, by sex, 2013–2014.

Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans 2016: Key

Indicators of Well-Being. Federal Interagency Forum on Aging-Related Statistics.

Washington, DC: U.S. Government Printing Office.

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In 2014, the most frequently occurring health conditions for non-institutionalized older adults were uncontrolled hypertension (55.9%), diagnosed arthritis (49%), heart disease (29.4%), cancer of any type (23.4%), diabetes (20.8%), asthma (10.6%), and stroke (7.9%). Differences in prevalence rates between men and women were small. However, prevalence rates by race and ethnicity varied greatly for some conditions. White men and women led other races and ethnicities in the prevalence for heart disease (30.7%) and cancers (26%). However, Black men and women experienced hypertension (70.6%), stroke (10.6%), and diabetes (31.1%) more than other groups. Older adults of Hispanic origin (regardless of race) also had diabetes (32.3%) more often than other non-Hispanic racial and ethnic groups.

Functional Limitations Functional limitations can be debilitating and thus, impact quality of life and well-being. In 2014, 22.6% of older adults reported a functional limitation that disabled them even if they used corrective devices (e.g., hearing aids, eyeglasses). More precisely, prevalence rates in functional limitations that created a disability (for both sexes and all races) included mobility (17.1%), hearing (4.2 %), vision (3.3%), self-care (3.0%), cognition (2.7%), and communication (1.2%).

Racial and ethnic differences emerged across some types of functional limitations. Specifically, non-Hispanic Black men and women were more likely to experience a disability in mobility (20.6%) compared to Hispanic older adults (16.9%) and non-Hispanic White older adults (13.3%). Additionally, Hispanic (4.6%) and non-Hispanic Black (4.0%) older adults were more than twice as likely as non-Hispanic White (1.7%) older adults to have a disability with cognition. An overview of the functional limitations older adults can face at the individual level is presented in Chapter 9.

Vaccinations Vaccinations against influenza and pneumococcal disease are critical to maintaining health in late life. A compromised or weakened immune system has trouble combating disease and if

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infected, can lead to death. One preventive measure undertaken frequently by local healthcare systems, public health departments, and pharmacies is to offer free vaccination clinics each autumn as a strategy to get older adults inoculated. In 2014, 70.1% of older adults reported being vaccinated against influenza and 61.3% were vaccinated against pneumococcal disease. Historically, Black men and women have been far less likely to receive an influenza inoculation than White men and women. In 2014, only 57.4% of Blacks and 60.5% of Hispanics (of any race) received an influenza shot compared to 72% of non-Hispanic White older adults. The disparity suggests continued and alternative education and outreach efforts need to target persons of color.

Self-Rated Health Despite the high prevalence of chronic health conditions and diseases in the second half of life, many older adults do not perceive that their health is bad or problematic. In 2014, 77.5% of older adults rated their health status as either good or excellent. Even 68.1% of persons age 85+ rated their health status as good or excellent. The reason older adults frequently rate their health higher than the people around them might rate it is because they tend to compare their ability to function against the functional abilities they see in other people of their own age. As a result, everyone knows someone who is worse off, so they themselves must be doing well!

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▶ Caregivers For many older adults, there comes a time when they need help with their activities of daily living (ADL; i.e., bathing, dressing, eating, toileting, and mobility) and instrumental activities of daily living (IADLS; housework, preparing meals, using a telephone, managing money, or shopping). Family caregivers frequently fulfill that role as an act of filial responsibility (or family obligation). Family caregivers are referred to as informal caregivers because they provide services without compensation.

Both care recipients and caregivers tend to be female (65% and 75%, respectively). Daughters (including biological daughters, step-daughters, and daughters by marriage) account for 19% of informal caregivers, followed by other relatives (22.3%), and spouses (21.2%). While the average age of the caregiver is 49.2 years, 35% of caregivers are age 65 or older. The average caregiver provides over 24 hours of care per week, and nearly one-fourth (24%) of caregivers provide care for more than 5 years. Fifteen percent of all caregivers provide care for at least 10 years.

Informal caregivers for persons with dementia (including Alzheimer's disease) provide on average, nine hours of service per day of care. Caregiving tasks include assistance with ADLs, IADLs, advocating for services and supports, and decision making on behalf of the care recipient (Family Caregiving Alliance, 2016). The challenges and stresses related to taking the responsibility for caring for a person with dementia are well documented as highly stressful and can negatively impact the health and well-being of the caregiver. In response, caregiver support groups and workshops are available to help caregivers cope successfully and maintain their own health.

If caregivers simply stopped performing caregiving tasks, the resultant demand for services and supports would overload the healthcare system in the United States. In 2013, the value of unpaid caregiving services was estimated to be $470 billion! That estimate is more than was reimbursed in the same year for

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Medicaid and home and community-based services combined (Family Caregiving Alliance, 2016). More information about the types of home and community-based services available in the United States is provided in Chapter 5.

Long-Term Care Services In 2014, approximately 9 million people (including older adults and young persons with extensive physical impairments and disabilities) were provided long-term care services through multiple service venues that included adult day service centers, home health agencies, hospice centers, nursing homes, assisted living facilities, and residential care communities that offered services and supports needed to function in daily life. Since 1966, when federal service programs (e.g., Medicare and Medicaid) were introduced, the number of older adults accessing services and supports has more than tripled from 2.5 million to 9 million. The workers employed by organizations offering such services are referred to as formal caregivers because unlike family caregivers, they are paid to deliver care.

Among the 9 million care recipients, approximately 1.2 million adults age 65 and older lived in nursing homes (Administration on Aging, 2015). Although this number includes only 1% of persons ages 65–74 years, it increases to 10% of persons age 85+. Overall annual resident rates usually include 5% or less of the general older population. Eligibility for nursing home admission is determined by an assessment of personal health needs, functional limitations, limitations with ADLs and IADLs, and available resources and supports in the community. Adults age 85 and older represent the fastest- growing segment of the population needing nursing home care and 25% are eligible for placement. Understandably, adults of that age are typically in declining health, have growing unmet needs, and dwindling resources. However, the number of nursing home beds is increasing at half the rate needed to meet the demands of this expanding age group and the need is expected to increase as baby boomers reach late life.

Older adults who become long-term residents of nursing homes will, on average, spend all their savings and assets within one year (Tamburo, 2017). In 2017, the average estimated costs

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for nursing home care was $235 per day ($85,775 per year) for a shared room, with the lowest costs for care in the south and mid- west ($165 per day; $60,225 per year) and the highest costs in the northeast ($350 per day; $127,750 per year; American Elder Care Research Organization, 2017). Once personal funds are depleted, a resident may become eligible for public assistance such as Medicaid, which helps pay for some care. In 2013, 62.9% of all nursing home residents were paying for their care using Medicaid.

Considering the sharp increased demand ahead for home and community-based care and institutionalized care, the question on the minds of all policymakers and service leaders is, “Where will the funds come from to continue funding long-term care services and supports?”

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▶ Death Older adults generally experience health co-morbidities as they age and each health challenge affects another in some way. However, discussions about national mortality statistics necessitate that deaths are attributed to the primary cause of death listed on the death certificate and not to multiple health diagnoses. This can pose challenges in analyzing causes of death when an individual has been diagnosed with a primary health problem (e.g., Alzheimer's disease or cancer) but dies from another (e.g., heart failure). In response, international rules of reporting deaths have been implemented to provide a system that will provide the most accurate profile of mortality as possible, while recognizing caveats in reporting.

Causes The negative health impacts of chronic health conditions include death. In 2014, the six leading causes of death for persons age 65 and older included conditions and diseases that can be controlled to some extent through healthy behaviors. As shown in TABLE 1-3, heart disease was the leading cause of death in 2014, followed by cancer, chronic lower respiratory disease, stroke, Alzheimer's disease, diabetes, unintentional injuries, and influenza and pneumonia.

TABLE 1-3 Leading Causes of Death Among U.S. Adults Aged 65 or Older in 2000 and 2014

Cause of Death 2000 Rates of Deaths (per 100,000)

2014 Rates of Deaths (per 100,000)

Heart disease 1,707 1,062

Cancer 1,124 915

Chronic lower respiratory

305 277

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diseases

Stroke 426 247

Alzheimer's disease

141 200

Diabetes 150 119

Unintentional injury

89 105

Influenza and pneumonia

169 97

Data from Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans

2016: Key Indicators of Well-Being. Federal Interagency Forum on Aging-Related

Statistics. Washington, DC: U.S. Government Printing Office.

When compared to rates in 2000, death rates in 2014 declined by about 20% for all causes except Alzheimer's disease and unintentional injury, which both rose. Rates for Alzheimer's disease increased in part due to improved diagnosis and reporting. Historically, a diagnosis of Alzheimer's disease was confirmed only upon autopsy of the brain after death. Therefore, the inclusion of Alzheimer's disease on death certificates, from which this data was collected, was likely more limited in 2000 than today.

Mortality from heart disease and cancer does not differ a great deal by sex, race, and ethnicity, although, differences do exist for some other causes of death. Specifically, diabetes is the fourth highest cause of death for non-Hispanic Black older adults (212 per 100,000) and Hispanic (all races) older adults (155 per 100,000) yet, is the seventh highest cause of death for non-Hispanic White older adults (106 per 100,000). Women had higher rates of death from Alzheimer's disease (222 per 100,000) than men (161,000 per 100,000), although, men experienced higher rates of death from unintentional injuries (131 per 100,000) than women (36 per 100,000).

Knowledge about causes of death helps us better understand life. Information about mortality can be used to develop interventions to delay or prevent health challenges,

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especially if we can connect them to client behaviors and habits. Our ability to “connect the dots” between the biopsychosocial influences in our clients' lives, will help us support them to age successfully and enjoy a quality of life.

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▶ Aging Successfully Successful Aging The concept of successful aging was first introduced over 50 years ago in response to negative social beliefs about age and growing older. In 1987, Rowe and Kahn took a biopsychosocial approach to develop their model for successful aging (Rowe & Kahn, 1997). The model included three key factors representing each domain. Rowe and Kahn proposed that individuals aged successfully if they:

Lived free of disease and disability Retained high cognitive and physical abilities Maintained meaningful interactional social relationships

Each of the three domains interfaced with the other two. At first blush, the model seems ideal as it represents the best of a bio-psycho-social approach. However, critics argue that the model dismisses and diminishes people who do not live free of disease and disability, have low cognitive and physical abilities, or cannot maintain social relationships. Are we to conclude that they cannot and will not age successfully? Moreover, by what standards should society judge a person's ability to age successfully? Researchers continue to modify the model to address the criticisms and adapt the model to include other factors including spirituality. The overall concept is valid, yet for many researchers the focus of successful aging should focus more on quality of life.

Quality of Life in Old Age Quality of life (QOL) is another subjective construct that is difficult to measure. Yet, researchers are in general agreement that it is influenced by the topics presented in this text, including but not limited to personal characteristics, living arrangement, physical and mental health status and health issues, social relationships, sexuality, and outlook on life. Because there is a

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lot of variance in rating quality of life, it is easy to understand how everyone can have a different sense of what it means.

The idea of living a quality life in old age is often dismissed by people who view it as a time of decline and suffering. Advertising campaigns, television, and social media tend to focus on “suffering” in old age (e.g., dementia, depression, cancer, arthritis, stroke), while ignoring evidence that people can live well and happily even with health problems. A recent study of centenarians found that a significant proportion of the oldest-old (over age 80) have lived with chronic health conditions (associated with the condition of “suffering”) for decades. However, the majority of older adults do not “suffer” through life but rather learn to live well in spite of pain or bodily restrictions (Terry, Sebastiani, Andersen, & Perls, 2008). The word “suffer” should be used less frequently and only in regards to individuals who truly cannot enjoy life due to irascible pain or anguish. The vast majority of older adults do not fit into this mold.

Quality of life and what it means to individuals has been studied in different cultures around the world (Molzahn, Kalfoss, Makaroff, & Skevington, 2010). Findings indicated that older adults in developed countries often citied general health and attributes of physical health such as sleep quality, energy, and being free of pain as essential to having a good QOL. In contrast, older adults in less developed countries cited energy, happiness, and home environment as positive contributors to their QOL. Results from a study in the United States on QOL (Pew Research Center, 2013) showed that QOL cannot be tidily defined by older adults. FIGURE 1-11 includes some of the indicators found to be important to U.S. older adults in achieving a good QOL. Specifically, being able to communicate with others, living without severe pain, and getting enjoyment out of life was identified more important; but, higher in importance to older women than older men.

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FIGURE 1-11 Quality of life indicators in old age. Percent of U.S. adults who say each of these is important for a good life in old age.

Data from Pew Research Center. (2013). Views on end-of-life medical treatments. Retrieved

from: http://www.pewforum.org/2013/11/21/chapter-6-aging-and-quality-of-life/.

Description

Life Satisfaction

Life experiences and hardships can challenge an individual yet, offer opportunities to strengthen insight, wisdom, and faith, which can actually promote satisfaction with life. When conceptualized in that way, it is easy to understand why people who experience difficulties, continue to find their lives satisfying and fulfilling. This contrast—a high level of satisfaction with life despite ongoing experiences with loss—is aptly referred to as “the paradox of aging” (Carstensen, Mikels, & Mather, 2006, p. 346).

Being satisfied with one's life also contributes to QOL. Ardelt (1997) explored life satisfaction in old age in terms of wisdom (i.e., an integration of cognitive, reflective and affective elements including an awareness and acceptance of human limitations), which allows an individual to view life with humor,

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compassion, and detachment. The approach addressed some of the same issues brought forth by critics of Rowe and Kahn's model of successful aging (1997). That is, persons experiencing poor life conditions can still have high levels of life satisfaction. Ardalt's findings ultimately confirmed that participants' level of wisdom explained much of the variability in life satisfaction among older adults. Well-being

Well-being is another subjective indicator often associated with quality of life. Steptoe, Deaton, and Stone (2015) theorized that well-being included three domains: evaluative well-being (i.e., life satisfaction), hedonic well-being (i.e., happiness, sadness, stress level, pain, anger), and eudemonic well-being (i.e., sense of purpose and life meaning). In examining how these influence QOL in older adults, they found that in English- speaking countries, life satisfaction levels tended to follow a U- shaped curve, with persons age 45–54 years having the lowest level and younger and older adults enjoying higher levels. Researchers generally agree that low levels of perceived well- being correlate with increased numbers of life stressors (e.g., child-rearing, work, family caregiving), which generally occur during mid-life. Older adults who transition into late life with few life stressors generally report positive levels of well-being. Back to Figure Graph presents quality-of-life issues that make older

US adults feel are necessary. Those are: being able to communicate;

being able to feed oneself; getting enjoyment out of life; living without

severe, lasting pain; long-term memory; feeling what one does is

worthwhile; being able to dress oneself; short-term memory for events

today.

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▶ Summary The world population is growing and aging, creating new opportunities for healthcare professionals to support people in the second half of life. The large and growing proportion of older adults, offers many opportunities for older individuals and the communities in which they live. Population data confirms that age is only a number and does not directly translate to declining health, poor quality of life, and dissatisfaction with life. Rather, older adults are a heterogeneous group with many members experiencing good health, engaging in productive activities, and maintaining their social connections. Not only do older adults have more time to pursue leisure and enjoyable productive activities, they have the time and inclination to help others as caregivers. Many older adults are also remaining in the workforce, some because they feel financially unable to retire, and others because they genuinely enjoy or appreciate the work. A key factor in allowing older adults to remain vibrant and active is good health, which can be promoted through physical, social, and cognitive engagement. The more healthcare professionals can support positive health gains and supportive environments, the greater the potential is for older adults to live happier, more fulfilling lives.

CASE STUDIES

Case 1: Joram is a 67-year-old man living in a nation torn apart by civil war. Initially, his community wasn't directly affected, and although many people were on edge, their lives remained relatively normal. He worked as a cook in a small local restaurant during the week, and on the weekends he spent time with his 32-year-old daughter, Aya, her husband, and their young children. Before long, war spread to their part of the country and life became more dangerous. Concerned for the well-being of their children, Aya and her husband decided to flee the country. They wanted Joram to join them, but he felt that he would only slow them down, and didn't

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want to leave the village he had called home all his life. Aya's family managed to escape to a neighboring nation, along with thousands of other refugees fleeing the war. Within months, the population of Joram's village went from several thousand people to just a few hundred, as the war continued to rage on.

1. How will the loss of so many residents likely impact Joram's village?

2. What challenges will the neighboring nation to which Aya and her family fled likely experience as migrants continue to flow in?

Case 2: Sharon and Karen are twin 65-year-old sisters who were born and raised in Connecticut. Sharon has chronic obstructive pulmonary disease (COPD) as a result of a decades-long smoking habit, and she is married to Paul. Together, Sharon and Paul have a 35-year-old unmarried son who lives in California. Karen and her husband, Joe, work full-time and have three children with whom they are close—a 36-year-old married daughter with 8-year-old twin girls, a 32-year-old divorced son with a 2-year-old daughter, and a single 28-year-old daughter who has gone back to college and lives with them, along with her 4-year-old son. A few months ago, Sharon and Paul retired and moved to Florida. They talked to Karen and Joe about moving south with them, but they decided not to. Today, Sharon and Paul are enjoying their new life in Florida, and are making the most of the warm weather and new friendships they have developed. The move has been beneficial for Sharon's health, even though she is still limited in what she can physically do. Karen and Joe are happy that they decided not to retire yet, and enjoy filling their days with productive activity alongside coworkers who are also friends. Although they miss one another, Karen and Sharon are both happy with the decisions they made.

1. Explain why you think Sharon decided to move south to Florida.

2. What are some reasons Karen decided to stay in Connecticut?

3. Do you think Karen and Sharon are aging successfully? Why or why not?

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Test Your Knowledge

Review Questions

1. The term _____________refers to the length of time a person is alive whereas _____________ refers to the level at which a person can perform.

a. Life expectancy, life span b. Chronological age, functional age c. Functional age, life expectancy d. Life span, chronological age

2. By tracking fertility rates in a region, policy makers and service providers can better predict the needs of a population and prepare for change.

a. True b. False

3. In 2016, adults age 65 and older made up approximately ______ of the U.S. population.

a. 5% b. 15% c. 30% d. 52%

4. Implementation of the Older Americans Act in 1965 was part of an effort to provide older citizens with free health care and incomes for the remainder of their lives.

a. True b. False

5. The term ______________ caregivers applies to workers who are paid to provide care and _____________caregivers refers to people who provide care without compensation.

a. Informal, formal b. Volunteer, respite

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c. Formal, informal d. Respite, informal

Learning Activities

1. How is the world population and the population of older adults expected to change in the coming years, and what three factors do demographers look to when predicting the age composition of a population?

2. How does a country's total fertility rate (TFR) change during wartime, and why? How does it change again when wartime ends, and why?

3. Obesity is becoming an epidemic health concern. Why is this particularly important when considering the population of older adults?

4. Imagine that you are the caregiver for an older person with dementia. What types of tasks would you be responsible for in this role?

5. Think about what aging successfully means to you, and what you will need to do in order to become an older adult that has aged successfully. Develop a list of five personal goals or indicators that you can revisit as an older adult to determine if you have aged successfully.

References Administration on Aging. (2015). A profile of older Americans.

Administration on Aging, Administration for Community Living, U.S. Department of Health and Human Services. Retrieved from https://www.acl.gov /sites/default/files/Aging%20and%20Disability%20in%20America/2015- Profile.pdf

American Elder Care Research Organization. (2017). How to Pay for Nursing Home Care / Convalescent Care. Retrieved from

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https://www.payingforseniorcare.com/longtermcare/paying-for- nursing-homes.html#cost-table

Ardelt, M. (1997). Wisdom and life satisfaction in old age. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 52B, P15–P27. doi:10.1093/geronb/52B.1.P15

Burtless, G. (2013). The impact of population aging and delayed retirement on workforce productivity. (CRR WP#2013-11). Chestnut Hill, MA: Center for Retirement Research.

Carstensen, L. L., Mikels, J. A. & Mather, M. (2006). Aging and the intersection of cognition, motivation, and emotion. In J. E. Birren & K.W. Schaie (Eds.), Handbook of the psychology of aging (pp. 343– 362). Burlington, MA: Elsevier.

Centers for Disease Control and Prevention. (2017). HIV Basics. Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, Centers for Disease Control and Prevention. Retrieved from https://www.cdc.gov/hiv/basics/index.html

Central Intelligence Agency. (2016). World Fact Book. Retrieved from https://www.cia.gov/library /publications/the-world- factbook/geos/xx.html

Family Caregiving Alliance. (2016). Caregiver statistics: Demographics. Retrieved from https://www.caregiver.org/caregiver-statistics-demographics

Federal Interagency Forum on Aging-Related Statistics. (2016). Older Americans 2016: Key indicators of well-being. Federal Interagency Forum on Aging-Related Statistics. Washington, DC: U.S. Government Printing Office. Retrieved from https://agingstats.gov/docs/LatestReport/Older-Americans-2016- Key-Indicators-of-WellBeing.pdf

Howe, N., Jackson, R., Nakashima, K. (2007). The aging of Korea: Demographics and retirement policy in the land of the morning calm. Global Aging Initiative (p. 52). Washington, DC: Center for Strategic and International Studies, Global Aging Initiative.

Klassen, T. (2010). South Korea: Ageing tiger. Global Brief. Retrieved from http://globalbrief.ca/blog/2010/01/12 /south-korea-ageing- tiger/

Molzahn, A. E., Kalfoss, M., Makaroff, K. S., & Skevington, S. M. (2010). Comparing the importance of different aspects of quality of

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life to older adults across diverse cultures. Age and Ageing, 40, 192–199. doi:10.1093/ageing/afq156

Mills, E. J., Bärnighausen, T., & Negin, J. (2012). HIV and aging— preparing for the challenges ahead. The New England Journal of Medicine, 366, 1270–1273. doi:10.1056/NEJMp1113643

National Institute on Aging, National Institutes of Health, World Health Organization. (2011). Global health and aging. (NIH Publication no. 11-7737). Washington, DC: U.S. Government Printing Office. Retrieved from http://www.who.int/ageing/publications/global_health.pdf

OECD. (2017). Obesity update 2017. OECD Health Statistics. Retrieved from https://www.oecd.org/els /health-systems/Obesity- Update-2017.pdf

Pew Research Center. (2013). Views on end-of-life medical treatments. Retrieved from http://www.pewforum .org/2013/11/21/chapter-6- aging-and-quality-of-life/

Rowe, J. W., & Kahn, R. L. (1997). Successful aging. The Gerontologist, 37(4), 433–440. doi:10.1093/geront/37.4.433

Samper-Ternent, R., & Al Snih, S. (2012). Obesity in older adults: Epidemiology and implications for disability and disease. Obesity in older adults: Epidemiology and implications for disability and disease 22(1), 10–34. doi:10.1017/S0959259811000190

Semega, J. L., Fontenot, K. R., & Kollar, M. A. (2017). Income and poverty in the United States: 2016. Report Number: P60-259. Washington, DC: U.S. Government Printing Office. Retrieved from https://www.census .gov/library/publications/2017/demo/p60- 259.html

Statista. (2017). Median age of the U.S. population 2016, by state. Retrieved from https://www.statista.com /statistics/208048/median-age-of-population-in-the -usa-by-state/

Stepler, R. (2016). Smaller share of women ages 65 and older are living alone: More are living with spouse or children. Washington, DC: Pew Research Centers. Retrieved from http://www.pewsocialtrends.org/2016/02/18 /smaller-share-of- women-ages-65-and-older-are -living-alone/

Steptoe, A., Deaton, A., & Stone, A. A. (2015). Subjective wellbeing, health, and ageing. Subjective wellbeing, health, and ageing 385(9968), 640–648. doi:10.1016/S0140-6736(13)61489-0

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Tamburo, J. (2017). Issues, impacts, and implications of an aging workforce. American Society on Aging. Retrieved from http://www.asaging.org/blog/issues -impacts-and-implications- aging-workforce

Terry, D. F., Sebastiani, P., Andersen, S. L., & Perls, T. T. (2008). Disentangling the roles of disability and morbidity in survival to exceptional old age. Disentangling the roles of disability and morbidity in survival to exceptional old age 168(3), 277–283. doi:10.1001 /archinternmed.2007.75

Tumen, S. (2016). The economic impact of Syrian refugees on host countries: Quasi-experimental evidence from Turkey. The economic impact of Syrian refugees on host countries: Quasi-experimental evidence from Turkey 106(5), 456–460. doi:10.1257/aer.p20161065

United Nations, Department of Economic, and, Social Affairs. (2017). World Population Prospects: The 2017 Revision, Key Findings and Advance Tables. Working Paper No. ESA/P/WP/248.

United States Government Accountability Office. (2015). Retirement security: Most households approaching retirement have low savings. (GAO-15-419). Washington, DC: U.S. Government Printing Office. Retrieved from https://www.gao.gov/assets/680/670153.pdf

World Health Organization. (2017). Obesity and overweight. Fact Sheet. Retrieved from http://www.who.int/mediacentre/factsheets/fs311/en/

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© patpitchaya/Shutterstock.

CHAPTER 2 Social Gerontology Nancy Brossoie, PhD Walter C. Chop, MS, RRT

CHAPTER OUTLINE

GERONTOLOGY

HISTORICAL PERSPECTIVES ON AGING

THEORIES ABOUT AGING

AGEISM Ageist Stereotypes Myths About Aging Ageist Language Ageist Attitudes of Healthcare Professionals Media Stereotyping of Older Adults

SOCIAL ROLES IN THE SECOND HALF OF LIFE Retiree Grandparent Surrogate Parent

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Caregiver Social Roles in Context

SOCIAL RELATIONSHIPS Personal Relationships Computers and Social Media The Aging Couple Aging Parent and Adult Child Never Married or Childless in Late Life Friendships

ELDER ABUSE Victims of Abuse Self-Neglect Among Older Adults Perpetrators of Abuse Signs of Abuse Mandated Reporting

EMPLOYMENT AND CIVIC ENGAGEMENT Workplace Discrimination Retirement

Advocacy Groups

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Define gerontology and how it differs from geriatrics. 2. Define ageism and explain why it is harmful to the

health and well-being of older adults. 3. Identify and describe some of the social roles adults

might hold in later life. 4. Describe the importance and focus of social

relationships in late life. 5. Define elder abuse and describe the general

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characteristics of victims and abusers. 6. Define mandated reporter and describe the signs of

potential abuse. 7. Explain why some older adults choose to work in late

life.

KEY TERMS

AARP Activity theory Adult Protective Services Ageism Biopsychosocial Caregiver Continuity theory Convoy of support Discrimination Disengagement theory Elder abuse Fictive kin Geriatrics Gerontology Grandfamilies Infantilizing Long-distance caregiver Long-term care ombudsmen Mandatory reporters Older adults Older Americans Act (OAA) Polyvictimization Sandwich generation Skip-generation household Self-neglect Senior Service America (SSA) Social roles Social Security Stereotypes

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Trusted individual

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▶ Gerontology The aging process begins the moment we are born. As we age, our bodies and minds grow, develop, and mature. During childhood, the course of our development is influenced by many factors, including our personal characteristics, our family background, how we are raised, where we grow up, and who raises us. Similarly, our development through adulthood continues to be influenced by our health, attitude, and behaviors and our interactions with family, friends, and the environment around us. Therefore, it is shortsighted to limit discussions about aging to matters of physical health and decline. Aging is a complex process influenced not only by health, but also by many other personal and social factors.

Gerontology is the scientific study of aging that examines the biological, psychological, and sociological (biopsychosocial) factors associated with old age and aging. The factors that affect how we age are broad in scope and diverse: biological factors include genetic background and physical health; psychological influences include level of cognition, mental health status, and general well-being; and sociological factors range from personal relationships to the cultures, policies, and infrastructure that organize society.

Although sometimes confused with the term gerontology, geriatrics is a medical term for the study, diagnosis, and treatment of diseases and health problems specific to older adults. Geriatricians (medical doctors who specialize in geriatrics) increasingly recognize the importance of social and psychological influences when treating patients. In this chapter, key issues in gerontology are presented to facilitate your understanding about the lifestyles of older adults and how these may influence health status.

In the field of social sciences, the term older adults is used to describe people age 65 years and older and is the preferred term when speaking about older individuals. The term patient is medically oriented and can refer to a person of any age. The

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term elderly has the social connotation of being white haired and frail. Because many people age 65 and older do not have gray hair and live vibrant healthy lifestyles, the term older adult has a more positive connotation, and therefore is preferred and used in this chapter.

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▶ Historical Perspectives on Aging Throughout history, older adults have been generally valued for the experience, insight, and wisdom they can share with others. Leadership is frequently bestowed upon older adults because of a social belief that wisdom and experience are acquired over time. However, conferring respect and responsibilities to older adults has not been consistent, and tends to occur more in preindustrial or agrarian societies where families are intergenerational and family members are dependent on one another for survival and support. For example, in 2004, hours before a tsunami in the Indian Ocean reached the shore, villagers from small fishing communities followed the leadership of their village elders and fled to safety. The suggestions of the elders were followed because the elders held the respect of the others and possessed the ability to interpret environmental cues that signaled impending danger, cues that were passed down to them from village elders long ago (Associated Press, 2004).

The image of the “wise old person” may be hard for those of us in the West to conceive, but in Eastern and indigenous cultures this is commonplace. West African teacher and author Malidoma Somé relayed the following description: “An elder is a repository for wisdom of the ancestors, the culture and the tribe. He or she is familiar with the various protocols for maintaining relationships with the other world and is keeper of the various ‘recipes’ that sustain the soul and spirit of the community. When elders are absent there is chaos and instability. The young are in charge but don't know where they are going” (Goodman, 2010, p. 415). Perhaps, we in the West can listen and learn from our elders as these other cultures do.

In industrial societies, older adults are generally less valued than they are in agrarian societies. During the 20th century, as industrialization in the United States expanded, family members became less dependent on each other for support, frequently leaving older adults to manage for themselves, which resulted in

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many older people living in poverty. In 1964, President Johnson launched the War on Poverty, which fought for institutionalizing civil rights, opportunities, and social services for all poor Americans to help lift them out of poverty. From that initiative, the Older Americans Act (OAA) of 1965 was passed into legislation. It specifically included language to address the needs and rights of older adults. The OAA is expected to be reauthorized indefinitely as one piece of legislation that represents the U.S. commitment to promoting the rights and welfare of older adults.

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▶ Theories About Aging Theories are used to guide research and help us make sense of the world around us. By using theory, we can better understand why individual behaviors or actions occur. In the early 1960s, when gerontology was a new field of research, the first psychosocial science theory on aging called disengagement theory was proposed by Cumming and Henry (1961). Guided by their observations of older adults in society, they proposed that older adults recognize that their health and abilities decline over time and their time as industrious citizens is limited before they die. In response, older adults intentionally remove themselves from their social roles and responsibilities to allow younger and healthier adults to take their place as productive members in society. At the time it was developed, the theory aligned well with social norms and social expectations of older adults. Society pressured adults to retire from the workplace at a preset age (e.g., mandatory retirement ages) and to relinquish their social responsibilities to younger people. However, the utility of disengagement theory was limited, because it did not it account for differences among individuals and did not accommodate the fact that if social norms were not enforced individuals would be less likely to disengage from life as the theory postulates.

In response to disengagement theory and to develop a better framework for examining old age, Havighurst (1961) attempted to explain aging through the use of activity theory. He posited that older adults are happier and healthier when they remain engaged in daily life and social interactions. He also suggested that as opportunities to be active change, older adults simply replace them with new ones to maintain their health and well-being. Although widely accepted as a positive view of aging, critics of activity theory suggest that it discriminates against individuals who do not have the resources to remain engaged or the interest in maintaining an active lifestyle.

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The third major psychosocial theory used in gerontology is continuity theory. Originally proposed by Maddox (1965), it was further developed by Atchley (1989), who theorized that people remain consistent in how they live their life, manage their relationships, and exhibit their personalities even though they experience changes in their physical, mental, and social status. Continuity theory can be used to help us understand the process by which older adults make decisions throughout adulthood. However, critics of continuity theory suggest it is based upon a healthy, wealthy, and male-oriented social model, and as such does not adequately account for the implicit social constraints placed on women, the chronically ill, or the role of social welfare programs in the lives of impoverished and needy older adults.

Social and behavioral scientists continue to build upon the three core theories to gain a better understanding of aging. Using a biopsychosocial approach, they combine the theoretical frameworks from the fields of psychology, sociology, and biology. They may also examine an issue utilizing a nuanced perspective (e.g., life course, feminist) or lens (e.g., LGBT, immigrant), which can open a window into the experiences and needs of the unique and often hidden populations not identified in other research. Our understanding of social science theories has grown exponentially in the last 50 years and is expected to continue at a fast pace as our aging population grows.

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▶ Ageism How we treat older adults is influenced by many social factors, including our own personal assumptions, expectations, and fears about growing older (Butler, 1969, 2008; Richeson & Shelton, 2006). Fears about aging are often based on our lack of understanding about the aging process. Unfortunately, many people believe that old age means being burdened with or suffering from physical disabilities, poor health, the inability to think clearly and quickly, and possessing a negative outlook on life. These inaccurate assumptions are examples of ageism, that is, the systematic labeling and discrimination against people who are old.

Ageism is based on stereotypes, myths about aging, and language that conjure up negative images of older adults. Ageism is to old age as racism is to skin color and sexism is to gender. Ageist thinking is detrimental to society and can result in limited opportunities (e.g., employment and workplace discrimination) and reduced access to resources (e.g., healthcare discrimination) for older adults. In its worst form, ageism leads to elder abuse, mistreatment, and neglect (Butler, 2008).

Ageist Stereotypes Ageist comments place older adults into set roles or categories called stereotypes. For example, older adults are sometimes characterized as senile, grumpy, set in their ways and mannerisms, and slow to accept new ideas and learn new skills (FIGURE 2-1). Similarly, older adults also may be portrayed as eccentric or overly happy about life, perceiving it as rosy and carefree. When young family members witness ageist stereotyping in their own families and communities, they are likely to engage in ageist practices and thoughts themselves, as it can lead them to believe that older adults are different and perhaps unworthy of respect and kindness. Similarly, older adults who are subjected to ageist stereotyping often begin to accept the stereotypes as true, which consequently compromises

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their health, well-being, and longevity (Levy, Slade, Kunkel, & Kasl, 2002).

FIGURE 2-1 Most older adults are active, productive, and enjoy their lives.

© Tetxu/Shutterstock

Ageist attitudes permeate all facets of society, especially when money is involved. Negative connotations about older adults being “greedy geezers” first surfaced in the March 1988 issue of the magazine The New Republic. In that issue, older adults were described as wealthy with financial and social advantages, yet eager to siphon public money (e.g., Social Security) that should be dedicated to poor and needy children (Tagliareni & Waters, 1995). However, it must be realized that older adults paid into Social Security their entire working lifetime, and thus expect and are owed remuneration. Over the last 50 years, there has been a gradual improvement in attitudes toward older adults in the United States, thanks to greater public education and awareness, the OAA, and increased media attention. This, however, has done little to reverse deep undercurrents that run below the surface of ageism, as some people continue to view older adults as drains on public resources.

Myths About Aging Older adults are not a homogeneous group. Even though collectively they may represent the same ideals and have shared

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the same historical experiences, they do not all look, think, or act alike. Older adults are as unique as members in any other group of people. Therefore, making blanket assumptions and generalizations about older adults simply perpetuates myths. The following statements are examples of myths that promote ageism. Although the statements may be accurate for some individuals, they are not true for older adults as a cohesive group (Butler, 2008; Richeson & Shelton, 2006; Palmore, 1990):

Myth 1: Older adults are either very rich or very poor.

Myth 2: Older adults are senile (have defective memory or are

disoriented or demented).

Myth 3: Older adults are neither interested in nor have the

capacity for sexual relations.

Myth 4: Older adults are miserable and unhappy with the state of

their lives.

Myth 5: Older adults are very religious.

Myth 6: Older adults are unable to adapt to change.

Myth 7: Older adults are unable to learn new things.

Myth 8: Older adults generally want to live in nursing homes.

Myth 9: Older adults urinate on their clothing.

Myth 10: Older adults tend to be pretty much alike.

Ageist Language Ageist language is insensitive to older adults, because it is used without much thought or understanding of how ageist terms hurt and degrade the individual. Some ageist terms include:

Geezer Biddy

Hag Fossil

Q-tip Blue hair/Q tip

Boroi (Japanese slang for old and worn) Old buck/codger

Old duffer Old battleax

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Dirty old man Little (or dirty)

Old coot old lady

Ageist phrases used in conversation also disparage older adults:

Over the hill Set in their ways

Old school One foot in the grave

Out to pasture Ol' man ____ (fill in name)

Older than dirt

Gone senile

Ageist Attitudes of Healthcare Professionals Unfortunately, healthcare professionals are not immune to promoting ageist attitudes when treating their older patients (Alliance for Aging Research, 2003; Simkins, 2007). Providers who view older adult patients sympathetically as “poor old dears,” who can do little to care for themselves, are actually placing little value on their patients' abilities. Calling an older patient “honey” or “dear” may be socially acceptable in some cultures, but generally carries a negative connotation. Infantilizing older adults by talking to them as if they were children with limited understanding, immature, or weak actually encourages dependency, because it devalues personal autonomy and individuality and does not promote person-centered care.

Other ageist terms used by medical professionals in describing patients in conversation or in medical charts include (Anti-Ageism Task Force, 2006):

“The wheelchair (or the stroke, hip fracture, etc.) in room

number….”

MFP (measure for pine box)

VAC (vultures are circling)

Bed blocker

GOMER (get out of my emergency room)

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TMB (too many birthdays)

Research has shown that healthcare professionals are significantly more negative in their attitudes toward older patients than they are toward younger patients (Simkins, 2007). Although not appropriate, their negative attitudes can be attributed to several reasons:

A need to justify why the medical needs of their older patient were not addressed or met. Feelings of frustration about not being able to manage the demands of the job. Feelings of helplessness due to not being able to save or cure patients' medical problems. Increased awareness or reminder of one's own life and mortality.

Awareness is the first step in overcoming an ageist attitude. To avoid making ageist comments and remarks as a healthcare professional, it is important to recognize and explore your personal feelings and attitudes about growing older. Stopping the spread of ageism is everyone's responsibility and starts at home.

Media Stereotyping of Older Adults The media regularly perpetuate the stereotypes of older adults through inaccurate and sometimes demeaning portrayals of older adults in print, advertising, and entertainment. This is puzzling considering that older adults have the ability to purchase the products supporting the media, and thus should be able to facilitate changing attitudes in the industry. Yet, limited efforts have been made to alter how older adults are depicted. Perhaps, as more members of the baby boom generation reach old age, positive changes will emerge.

The entertainment industry plays a major role in perpetuating stereotypes. More often than not, older adults are portrayed as comical, stubborn, eccentric, and foolish. They are also often depicted as narrow-minded, sickly, poor, sexually dissatisfied, and slow to respond (Hilt & Lipshultz, 2016).

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Movie scripts tend to feature older adult characters only when they are reclusive (Finding Forrester), offer some extraordinary skill (Space Cowboys), dying (The Notebook), or facing their own mortality (The Bucket List). It is uncommon to watch older adult characters on the big screen portraying everyday people (Return to Me) in a manner that does not romanticize their lives (Cocoon), portray them as behaving comically (Grumpy Old Men), or proliferate the expectation that most people will get dementia (Nebraska, Iris, On Golden Pond).

Television show scripting is no different. Although we do see older adults on special programming, it is unusual to see a realistic portrayal of an older person on a television show (Hilt & Lipshultz, 2016). Again, this network programming decision is puzzling, considering that television shows are targeted for specific demographic audiences who are apt to buy the sponsors' products. Older adults watch television more than any other age group and generally have the discretionary income to buy the products advertised during commercials (Hilt & Lipshultz, 2016). Yet, limited efforts have been made to accurately depict the lives of older adults on television, with the exception of selected actors such as Jane Fonda, Lily Tomlin, Judi Dench, Betty White, Maggie Smith, and a few noteworthy others.

Print and television advertisements also tend to portray older adults at their worst—when they have some kind of physical ailment or have the desire to look and feel younger. We see older actors in commercials for laxatives, skin moisturizers, gas elimination medications, analgesics, and hair coloring products, just to name a few. This would not be as detrimental to the image of the older adult if we also saw older adults in other types of commercials advertising general use products.

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▶ Social Roles in the Second Half of Life Social roles are useful in identifying, defining, and validating each member of a society. A social role not only defines a position, but also supports social norms and expectations that dictate behaviors and attitudes within social groups such as families, workplaces, and communities. Some social roles remain with us throughout our lives (e.g., friend, cousin, daughter), whereas other roles change or transform as new levels of accomplishment or development are reached. For example, a person may transition from being a student to a teacher or from a worker to a retiree. In late life, social roles are more apt to remain constant (e.g., neighbor, club member, and community resident); however, the level of participation in those roles may fluctuate as changes in health, finances, and mobility occur. Nonetheless, older adults continue to participate in many of their social roles, even when faced with diminished capacities and capabilities (Ferraro, 2001). Three new roles often taken on in the second half of life include retiree, grandparent, and caregiver.

Retiree For many retirees, adjusting to changes in social role and status that accompany leaving the workforce can be difficult. When they were employed, they were granted a status that provided them with respect and support from their colleagues, friends, and acquaintances. However, transitioning from a position of daily recognition and involvement to one with limited recognition and possible isolation from other individuals can be psychologically difficult (Wang, 2007). Although no single solution exists for making the social adjustment into retirement, it can be made easier with planning and preparation. Retirement planning advisors strongly suggest that in addition to financial planning, older workers plan their retirement routines, hobbies, habits, and social interactions, so that they can remain engaged and socially connected, which will enhance their quality of life. Additional information about retirement planning is provided in

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this chapter under the heading Employment and Civic Engagement.

Grandparent Grandparenting is a social role that many adults look forward to once their children leave home and establish their own lives. Because people are living longer, it is not uncommon for older adults to take on the role of great-grandparent or even great- great-grandparent. The U.S. Census Bureau estimated that approximately one in four adults in the United States were grandparents in 2010 (MetLife Mature Market Institute, 2011).

Grandparents generally welcome interactions with their grandchildren as a chance to relive their early years without balancing the stresses and responsibilities of caring for their own children the first time around. Grandparenting also offers them the possibility for sharing their wisdom and lived experiences with their grandchildren. A new grandchild can also be like a booster shot for some older couples, reawakening early days of marriage and the enthusiasm of early parenting (Berkman & Breslow, 1983).

Not surprisingly, the role of a grandparent is as varied as any other social role. Grandparents share multiple roles and responsibilities within families, and as such can be described as one of five distinct types (Neugarten & Weinstein, 1964):

Distance figures (live far away and visit infrequently) Fun seekers (provide and engage in exciting opportunities) Surrogate parents (take on a parenting role) Formal (as patriarch or matriarch of the family) Reservoirs of family wisdom (sources of knowledge and expertise)

Yet, the role of a grandparent is not static. The role of a grandparent today needs to be responsive to the needs of the extended family. In the United States, one of the most important roles of a grandparent is that of a caregiver (FIGURE 2-2). Grandparents can support grandchildren in the broadest sense by providing child care, paying educational costs, and sometimes providing the deposit for large expenses such as a new house.

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The toy industry, especially, likes grandparents because they purchase approximately25% of all toys, 40% of all children's books, and 20% of all children's video games (Howe, 2016).

FIGURE 2-2 Grandparents often take on a surrogate parent role. © Rolf Bruderer/Blend Images/Getty Image

Surrogate Parent Increasingly, more grandparents are assuming a primary parental role in raising their grandchildren. In 2015, the U.S. Census estimated that 2.6 million grandparents had full responsibility for providing for their grandchildren's basic needs. Among them, one million children did not have a parent actively involved in their lives (U.S. Census Bureau, 2017a). These grandfamilies or skip-generation households are largely formed due to substance misuse (e.g., opioid addiction and alcohol dependence) and incarceration of parents (i.e., the grandparents' adult children).

The role of becoming a surrogate parent in late life can be demanding because it requires engaging in all aspects of a child's life, including associating with teachers and other parents who are much younger. This new social role can be quite fulfilling and simultaneously challenging—especially when undertaken with a fixed retirement income, managing personal health problems, balancing personal needs with parenting demands, and having to cope with the social stigma attached to

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the adult child's inability to parent. More and more communities are establishing community support programs for grandparents in an effort to provide a way to connect grandfamilies, help grandparents learn how to navigate social service systems, and provide needed counseling and legal resources.

Caregiver Becoming a caregiver for a spouse, family member, or friend is another social role most people do not think about until they find themselves faced with providing care. An estimated 14.3% of all U.S. adults are a caregiver to person age 50+ (National Alliance for Caregiving & AARP Public Policy Institute, 2015). Caregiving responsibilities can emerge slowly or start suddenly after an illness or accident. Sometimes, the need for assistance is so imperceptible that neither the caregiver nor the care recipient recognizes the full extent of decline over time. For example, providing care to a spouse can be a lengthy and subtle process with the tasks gradually increasing in intensity before transitioning into a full time job and before other family members are even aware of the need.

When that time comes, adult children are apt to intervene, even though they are ill-prepared to take on the caregiving role. Although each family is different, researchers have found a common pattern in family caregiving within the United States. Generally, older adults depend on the oldest daughter (or daughter-in-law) to provide assistance with activities of daily living and rely on the eldest son for support with financial and estate matters (Suitor, Pillemer, Keeton, & Robison, 1996). This does not mean that other family members will not be asked to help or will not offer to help. It simply means that, culturally, older adults expect specific assistance from these offspring.

In many families, adult children are unaware of the daily routines, habits, and needs of their parents until a health crisis arises and additional support in the home is needed. Like their children, most older adults want to live independently and do not want to live with other family members (Bursack, n.d.). They also do not want to share their financial information or include their children in their decision-making processes. Older adults want to retain control over their lives. So, it comes as no

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surprise that many older adults resist accepting the role of care recipient. They are unwilling to relinquish their roles and responsibilities to other people, even when they know they could use help. Out of pride, some older adults remain adamant about not accepting support until they reach a point where they cannot function without it.

When additional support or care is needed, approximately 83% of support received comes from family members (National Alliance for Caregiving, 2005). One study estimated that 24% of caregivers of older adults lived with the person they were caring for, 42% lived within 20 minutes away, and 15% lived more than 1 hour away—referred to as long-distance caregivers. Nearly 7 million Americans are long-distance caregivers for an older relative (MetLife & National Alliance for Caregiving, 2008).

As family caregiving evolves and continues over time, it can demand more of the adult child caregivers' time, leaving less time for family care involving their own children. This can be especially challenging for caregivers simultaneously providing care to two or more generations. Adults found in this position are often referred to as the sandwich generation, because they are caught between two caregiving roles—caring for a child and caring for a parent (or even a grandparent).

Social Roles in Context Most Western societies, including the United States and Western Europe, stress individualism (i.e., the needs of the individual are addressed before the needs of the group). Other cultures such as those found in Asia and the Pacific Islands are collectivist societies; that is, members place the needs of the family or collective group (which may be an intergenerational family) before the needs of the individual. Differences between individual and collective perspectives naturally inform how groups perceive older adults and place responsibility for providing care and support. Understanding how groups differ can assist in the planning and provision of effective healthcare services, no matter where the care is provided.

In an individualistic society, older adults are generally free to remain living independently and managing life as they see fit

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as long as they can afford it and they are not placing themselves or others in immediate danger. In a collectivist society, the resources of the older adults are pooled with other family resources. The activities of daily life are shared rather than lived separately. As a result, living expenses are reduced because the older adult lives with other family members. For example, in India, when a parent joins a young household, he or she is welcomed as a member of the household. Even though the household may not have planned to include the older adult, family members willingly make accommodations for the aging family member (Pinto & Sahur, 2001). In a Filipino household, the youngest daughter is expected to care for the older adult at home until she marries, and then moves the older adult with her to her husband's home (Torres, 2002).

The social role of the older adult within the household also varies by social expectations. Ethnic groups that revere elders as authority figures enable the older adults to reside in positions of power within the family and community. Other ethnic groups take an almost opposite view and see older adults in terms of added responsibility, if not burden, to family and society.

In the Vietnamese culture, a grandparent shares household authority with the father of the household. His or her place in the family is highly regarded (Hunt, 2002). In contrast, in the old Athabascan Indian culture in Alaska, older adults were seen as burdens—a drain on food and resources in the harsh and demanding climate. Older adults were expected to contribute as much as possible until the day when the chief of the tribe would leave them to die in the wilderness in an effort to preserve resources for the healthy and strong members of the tribe (Wallis, 1993).

Family life and respect for the knowledge and wisdom of elders are central to Asian culture. This has, however, decreased somewhat in the Asian American population with modernization and assimilation into American society. However, Asian cultures remain strongly collectivistic and believe family life is central to their existence (Brightman & Subedi, 2007; Kim- Rupnow, 2001).

Even though collectivism may appear to be an effective approach to managing family and social resources, sometimes it

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has not been perceived as beneficial to people with disabilities, including dementia. They are often viewed as an embarrassment to the family because they are not strong enough to contribute their fair share of family responsibilities. As a result, they are frequently disowned, abandoned, and left to beg on the streets to get their needs met, further increasing the collectivist society's disdain for them. Because individuals with special needs (i.e., physical, cognitive, and/or behavioral) generally do not have strong support from within the collectivist society to lead a productive and successful life, they are challenged to determine their own life course (Jezewski & Sotnik, 2001).

In the United States and in other individualistic societies, the strong belief in individualism has produced legislation that has protected the rights of people with long-term disabilities (e.g., the Americans with Disabilities Act) and has provided accommodations for people with physical and mental health needs in communities and the workplace. Coupled with legislation through the OAA, significant strides have continued to be made to ensure that older adults are legally protected to lead full and productive lives.

A great deal of research has been conducted in the United States on family dynamics and the roles and responsibilities of family members. The United States has become a mobile and independent society in which intergenerational households and the strong reliance on family as a source of sole support are no longer the norm. Yet, among some racial groups such as African Americans, families still tend to maintain extensive kin networks to provide help, especially to young family members and neighbors. Community-based institutions such as the church are also viewed as very important sources of physical and emotional support. Similarly, Hispanic Americans, who make up 17.8% of the U.S. population (U.S. Census Bureau, 2017b) maintain close family relationships that promote family solidarity. They have more contact with their children than their non-Hispanic counterparts (Garcia, 2001). As the number of older adults surpassing age 65 increases, additional studies will need to be conducted to examine how different ethnic groups are coping and meeting the needs of their aging parents.

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▶ Social Relationships Personal Relationships Maintaining social relationships contribute to better physical health and provide emotional and psychological benefits, including better sense of belonging, increased self-worth, and feelings of security—all of which contribute to improved psychological well-being (Qualls, 2014). The importance of retaining personal relationships does not diminish as one ages. Older adults desire and engage in social relationships like younger adults, although their relationships are likely to reduce in number and type. Opportunities to socialize are also likely to lessen when personal health declines or mobility becomes more difficult.

Research on personal relationships has also shown that as we age and our health declines, we intentionally distance ourselves from some of our relationships, retaining only the ones from which we can benefit and know we can maintain (Berkman & Breslow, 1983). We do this because we recognize that relationships should be reciprocal. If we no longer have the ability, energy, or resources to exchange support, we let go of those relationships. The people we choose to retain in our social circle in late life tend to be people from whom we draw strength and value the most, like family members. Kahn and Antonucci (1980) aptly described the evolution of personal social network as a convoy of support, moving with the individual through life challenges and transitions. Relationships maintained in late life can serve a variety of purposes and take place within a variety of contexts. The following sections provide additional insights into some of the different types of relationships older adults enjoy and how they maintain them.

Computers and Social Media Computers play a large role in keeping older adults connected to family and friends, reconnecting old friends, and developing new relationships. Accessing the Internet is gaining popularity

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as friends encourage friends to “get connected.” A 2017 study by the Pew Research Center (2017a) indicated that 67% of adults age 65+ used the Internet, and among them 75% went online daily. Fifty-one percent of all older Internet users had Internet service in their home. All older Internet users tended to be more educated with higher incomes than nonusers. Similarly, owning a tablet or eReader (e.g., Nook, Kindle) was associated with advanced education and high income. In 2015, 25% of older adult users also reported playing online video games, an activity largely pursued by younger adults.

Like their younger counterparts, older adults are increasingly keeping in touch through email and social media rather than relying on letters and telephone calls, as their parents did. Computers have enabled older adults to remain in touch and stay current with activities in the lives of children, grandchildren, and friends who have moved away (FIGURE 2- 3). In 2017, 34% of older adults reported using Facebook or Twitter, a 7% increase over the past 4 years (Pew Research Center, 2017a). Similarly, chat rooms and online dating services have also increased and enabled older adults to establish new relationships for companionship and love (Malta, 2007).

FIGURE 2-3 Email is an easy way for interested older adults to maintain communication with family and friends.

© Paul Maguire/Shutterstock

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For older adults who have never used a computer, learning to operate one may be initially challenging. Among adults age 65+ who reported getting a new digital device, 73% reported needing someone else to set it up for them (Pew Research Center, 2017a). However, many community centers and libraries provide periodic classes on how to send email, surf the web, access social media sites, play games, and use word processing programs.

The Aging Couple Like other adult couples, some older adults have been married or in a committed relationship for decades, whereas others have more recently become a couple later in life (FIGURE 2-4). Older men who find themselves single generally have no problem finding female companionship because, statistically, women continue to outlive men. The 2010 United States Census Bureau confirmed that assumption by reporting that by age 85 there were 100 women for every 54 men (U.S. Census Bureau, 2011).

FIGURE 2-4 Expressions of love and affection. © Fotoluminate LLC/Shutterstock

Couple relationships that have endured into old age have probably experienced and overcome many challenges and crises along the way. Health problems aside, one of the earliest challenges faced in later life occurs during transition into

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retirement. For some couples, it is a time of deep soul searching, redefining social roles as individuals, and wondering what the future of the couple relationship will be like (Silverstone & Hyman, 1992).

If a couple can successfully weather the challenges associated with retirement, their feelings for each other can actually become enriched and strengthened. However, problems can arise when each person struggles with the change at different times. For example, if one person is ready to retire while the other one is not or one wants to sell the family home and move to a warmer climate and the other does not, problems in the relationship often arise. Subsequently, some couples spend considerable time reflecting on the value, purpose, and usefulness of their relationship during this stage of life. For many, this is just another one of life's challenges that they will share and work through together. Others, however, will see it as a reason and opportunity to dissolve their relationship.

Many other couples choose not to grow old together. Maybe they have stayed together for the sake of the children or perhaps they became absorbed in work or other activities over the years to avoid having to deal with underlying relationship issues. These couples may share their lives but might not be emotionally engaged. They may be genuinely fond of each other but view their relationship as more of a business partnership than a marriage. Similar to a marriage of convenience, each partner “does his or her own thing.” Sometimes, one or both partners engage in extramarital affairs (even into late life), which can bring about the final unraveling of the marriage.

The Pew Research Center (2017b) reports that, in 2016, 61% of adults ages 50+ were married and the rate of divorce has been steadily rising. In 1990, only 5% of older adults were divorced, yet by 2015 more than 10% were divorced. Research has shown that divorce rates are higher among second, third, or subsequent marriages, which are reflected in this data. However, it is important to note that divorce cannot be only attributed to persons with multiple marriages. Among the couples divorced in 2015, 34% had been in a first marriage lasting at least 30 years and 10% had a marriage lasting at least 40 years. Cohabitation with a sexual partner is also on the rise among older adults and

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corresponds to the divorce rate. Older adults ages 50+ represent 23% of all cohabitating adults—a rate increase of 75% since 2007. Unlike their younger counterparts, older cohabitants have a history of marriage and are often older. Thirteen percent of older adult cohabiters are aged 70+.

Although some relationships worsen or dissolve with age, others actually get better and experience a renewal or rebirth. Communication often improves and affection and intimacy can become recharged. Late life can be the most satisfying years of a marriage for the couple who finds contentment in their relationship and has come to accept one another for who they are (Silverstone & Hyman, 1992).

In many ways, late-life relationships among same-sex couples are no different than for opposite-sex couples. Aside from sexual orientation, the main difference is public visibility. For many lesbian (i.e., a woman is sexually attracted to women), gay (i.e., a man is sexually attracted to men), and bisexual (i.e., an individual has a sexual attraction to both men and women) elders born more than 65 years ago, a lifetime of social marginalization, persecution, and denial of civil rights because of sexual orientation has forced them to keep their partnerships secret. Even though many lesbian, gay, bisexual, and transgendered (LGBT) couples have built lives that contradict negative social identities, many remain reluctant to reach out to the greater community for support services in late life (Meisner & Hynie, 2009; National Resource Center on LGBT Aging, 2013). The challenge for healthcare professionals in offering services to members of the LGBT community is gaining access and providing care that respects their personal choice and right to self-determine care, just like those afforded members of the heterosexual community.

Aging Parent and Adult Child Relationships between aging parents and adult children also tend to be as varied as spousal relationships. Within most families, there is a fair degree of positive involvement between generations. Many parents continue to provide emotional, physical, and financial support to their adult children and grandchildren to help them manage their lives. Ideally, support

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would be provided with good intentions with “no strings attached.” However, an underlying reason for helping out younger family members may include a hope or unspoken agreement that help will be reciprocated in later years when needed (Silverstone & Hyman, 1992).

Unfortunately, strained relations can develop between a parent and child in adulthood. Verbal finger pointing—unfair fighting with “you never” or “you always” statements—can upset relationships, as can favoritism toward some family members over others. Sometimes, parental disapproval of a lifestyle or friends generates family disharmony. Feelings of disappointment coupled with shame may lead older parents to preserve their own public image instead of their sons' or daughters' needs and feelings. However, if affection and communication remain open between a parent and adult child, their psychological well-being will benefit and their relationship will grow stronger (Silverstone & Hyman, 1992).

One relatively recent challenge faced by many older adults has been the increased prevalence of substance misuse (i.e., dependence on alcohol and drugs) and incarceration rates among their adult children. Subsequently, many older adults are forced to deal with the addictive behaviors of their adult child (or grandchild), a task many are ill-prepared to undertake. Studies indicate that the problems of adult children are a significant cause of depression in older adults—the greater the child's problem, the greater the parent's depression. Older adults continue to want the best for their children, no matter what their age, and are often emotionally affected by the challenges and failures their offspring encounter (Dunham, 1995).

Never Married or Childless in Late Life Approximately, 4% of the population in the United States age 65 and older has never married (Tamborinia, 2007). Also notable is the increase of women in the United States who have never borne a child (nearly 20%)—a rate that has nearly doubled since the 1970s (Tamborinia, 2007).

The reasons for remaining single and for not bearing children are numerous and personal. Still, social roles and expectations of older adults are often centered on being coupled

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and having families. This narrow perspective leads some people to wonder how never married and childless people receive support later in life and from whom.

Although some people may assume that never married and childless couples have been deprived of the emotional support of family in late life, research suggests otherwise. Happiness, life satisfaction, loneliness, and self-esteem appear to be unrelated to contact with adult children during late life (Connidis & McMullin, 1993). Many never married and childless couples have adjusted by adapting their social network to include relationships generally thought to be held by partners and children. These fictive kin are treated as family and linked by close emotional bonds (Jordan-Marsh & Harden, 2005). Sometimes, a niece or a nephew takes on the social role of a child or a sibling takes on some of the traditional roles of a spouse. Despite the social pressure to marry and bear children, individuals who do not conform to social pressure are not emotionally unstable in later life (FIGURE 2-5). Never marrying or remaining childless is not something to be pitied or viewed as a curiosity. It is simply another way of life.

FIGURE 2-5 Friendships are sources of emotional and motivational support.

© Jupiter Images/DigitalVision/Getty Images

Friendships

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Friendships established early in life often continue into old age, especially if they begin during midlife. Unlike relationships with family members who are connected by blood ties and replete with social roles and expectations, friendships exist because the individuals involved share similar interests and want to maintain the relationship. Like younger adults, older adults tend to establish friendships with people similar to themselves: same gender, similar social and economic status, and from the same town or community. However, as friendships deteriorate as a result of increased distance, poor health, or death, new ones are formed if the older adult has the access and opportunity to build a new connection. The ability to form new relationships is essential because an important outcome of friendship is enhanced psychological well-being. Research indicates that friendships have an even stronger influence on well-being than do familial relationships, although the precise relationship remains unclear (Adams, Leibbrandt, & Moon, 2011).

Studies have also shown that women have more friends than men do, because they view and engage in friendships differently (Antonucci, 2001). Women perceive friendships to be sources of ongoing emotional and physical support and prefer to surround themselves with friends who can help them address the daily challenges they face. When a friendship ends, it is replaced with a new one. Thus, women are intentional about managing their friendships so that they maintain the desired complement of friends to help them process the events in their life. Men, however, prefer to rely on their spouse, partner, or close family members for help and emotional support rather than friends. Males' friendships are based on specific activities such as a sport or a project rather than sharing feelings and processing a particular situation or event. As a result, men tend to require fewer friends than women do.

Like young adults, older adults nurture their friendships and feel a sense of loss when a friendship dissolves or becomes inactive. Poor health, new living arrangements, and loss in mobility frequently change the course of friendships and make sustaining them that much more difficult. As Kahn and Antonucci (1980) proposed in their “convoy of support” when maintaining relationships becomes too difficult to manage, older

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adults will break off some relationships because they recognize they cannot reciprocate support. Instead, they choose to place their energy and resources into their most valued relationships— those with their closest family and friends.

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▶ Elder Abuse Elder abuse is an insidious and often hidden problem, which is expected to increase as baby boomers reach old age. Elder abuse is a form of family or domestic violence, which can be defined as “intentional or neglectful acts by a caregiver or trusted individual that lead to, or may lead to, harm of a vulnerable elder” (Centers for Disease Control and Prevention, 2016). For some victims, their abuse is a continuation of abuse or violence that began years earlier, and for other victims, their abuse started in late life after they became more dependent on someone else for help, support, and care (Rennison, 2001).

Accurate statistics on the prevalence of elder abuse are hard to find because incidents are rarely reported, and when they are, how they are recorded varies by the reporting agency. In 2016, the CDC convened a panel of experts to come up with definitions to streamline the process. The first challenge they faced was determining who qualifies as an elder. Most organizations, like the American Medical Association (AMA), do not specify the age of an elder, whereas the OAA which funds aging services defines an elder as a person age 60 or older. The second challenge was identifying how abuse is categorized. The AMA categorizes and reports abuse by physical or mental injury, sexual abuse, and withholding of necessary food, clothing, and medical care. The National Center on Elder Abuse (NCEA) advocates for more precise categorization that includes physical abuse, psychological abuse, sexual abuse, exploitation, neglect, abandonment, and self- neglect (TABLE 2-1). Regardless of the typology of abuse utilized, research indicates that each type of abuse does not necessarily occur in isolation. Rather, abuse may expand to include multiple forms of abuse known as polyvictimization (Ramsey-Klawsnik, 2017; Roberto, 2017).

TABLE 2-1 NCEA Definitions of the Seven Types of Elder Abusea

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Type Definition

Physical Use of force to threaten or physically injure a vulnerable elder.

Psychological Verbal attacks, threats, rejection, isolation, or belittling acts that cause or could cause mental anguish, pain, or distress to an elder.

Sexual Sexual contact that is forced, tricked, threatened, or otherwise coerced upon another person, including anyone who is unable to grant consent.

Exploitation Theft, fraud, misuse or neglect of authority, and use of “undue influence” as a lever to gain control over an older person's money or property.

Neglect Failure or refusal by a caregiver to provide for a vulnerable elder's safety, physical, or emotional needs.

Abandonment Desertion of a frail or vulnerable elder by anyone with a duty of care.

Self-neglect Inability to understand the consequences of one's own actions or inaction, which leads to, or may lead to, harm or endangerment.

National Center on Elder Abuse (n.d.).

In light of the data analysis challenges, a research team in New York triangulated data collected by agencies and programs responsible for serving victims with information collected by citizens age 60+. The team estimated that approximately 7% of the older population has experienced some form of abuse in the previous year; an estimate slightly lower than other research has indicated (Acierno et al., 2010). For every case reported in New York, approximately 24 cases went unreported. The rates of abuse vary by type of abuse, with the most frequent type of abuse reported being financial (Lifespan of Greater Rochester,

a

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Inc., Weill Cornell Medical Center of Cornell University, & New York City Department for the Aging, 2011).

Victims of Abuse Like individual victims of domestic violence, victims of elder abuse are unique but share common characteristics. Many victims are isolated from their social networks and communities. Their isolation may be of their own choosing or may occur because their abusers have systematically isolated them to maintain more power and control over them. Many victims experience physical and mental health problems, some of which are exacerbated by ongoing abuse.

A typical victim of elder abuse is female, age 75+, lives alone, has physical or cognitive impairments, lacks a network of social support, and is reliant on other people for care and support. A victim's hesitancy to challenge or confront a perpetrator or report abuse to persons in a position to stop the abuse can be difficult for someone outside the relationship to understand. However, the victim's need for care and reliance on the perpetrator for support is so great that they tend to not report problems out of fear that they will be without services and support if they speak up. Moreover, they do not want other people to know they are in their current situation, they do not want to get the perpetrator in trouble (especially if the abuser is a close relative or friend), or they fear how the perpetrator might treat them after being reported. For many victims, the inconvenience of being abused outweighs the perceived consequences of reporting; so they remain silent (Lafferty, 2009).

Self-Neglect Among Older Adults A very challenging type of elder abuse to address and eliminate is self-neglect. The behaviors exhibited by individuals who self- neglect (e.g., not bathing, wearing clothes inappropriate for the weather, poor nutrition) challenge the social norms and values shared by the general population. Self-neglecting behaviors left unchecked can permeate all facets of life, including personal care, home environment, and personal relationships. Interventions that strive to reduce problems or alleviate

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conditions related to self-neglect are difficult to initiate and sustain because participants decide not to participate. When supporting individuals who self-neglect, it is imperative to honor their personal autonomy and legal right to live as they choose, if they are competent to make this decision, no matter how difficult or frustrating it may appear to you.

Perpetrators of Abuse There is limited information available about perpetrators of elder abuse because victims are hesitant to identify them and file legal charges against them. In most cases, the relationship between a victim and a perpetrator has been established long before the abuse begins. Perpetrators present themselves to the elder and the elder's family as a good caring person or a supportive resource. Even if they did not initially plan to abuse their victim, perpetrators become savvy in manipulating how they present themselves, making it hard for individuals outside the victim/perpetrator relationship to recognize problems.

Although general public opinion is that most perpetrators are male offspring, available evidence suggests not all perpetrators are alike (Roberto, 2017). Among family members who provided care and perpetrated abuse, many typically relied on the elder for housing, financial support, and emotional support (Jackson & Hafemesiter, 2012). Substance misuse (alcohol and drugs) is another characteristic among perpetrators (Jackson & Hafemesiter, 2012). But, as found in cases of domestic violence, substance misuse may contribute to lowered inhibitions and poor decision-making but does not cause the abuse inflicted. The complex interdependent relationship between family perpetrators and their victims can be even more difficult to understand when the victim is cognitively impaired (Wiglesworth et al., 2010). Such abuse can be easily hidden or explained as the victim is unlikely to be believed if abuse is reported.

Perpetrators of financial abuse tend to be professionals (e.g., attorneys, financial planners, and conservators) entrusted with fiduciary care (MetLife Mature Market Institute, 2009). Legal guardians are also often involved with misappropriating assets and money through schemes that benefit themselves at the

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expense of the elders (United States Government Accountability Office, 2010). Healthcare providers can also be perpetrators of abuse. Reports of physical abuse, including use of physical restraint in feeding and toileting, hitting, beating, kicking, and sexual abuse, have been reported. Teaster and Roberto (2004) further found that having a diagnosis of Alzheimer's disease predicted physical abuse of an elder by staff. Moreover, residents perpetuated sexual abuse on other residents over 90% of the time. The forms of sexual abuse initiated included unwelcomed sexual interest in the body, sexualized kissing, fondling, and unwelcomed discussion of sexual activity (Teaster & Roberto, 2004).

Signs of Abuse Because elder abuse can be a hidden problem that is easily overlooked or explained by health-related problems, the NCEA developed a list of signs of abuse to promote awareness among families and healthcare providers (TABLE 2-2).

TABLE 2-2 NCEA Signs of Abuse

Type of Abuse

Signs of Abuse

Physical & Sexual

Inadequately explained fractures, bruises, welts, cuts, sores, or burns. Unexplained sexually transmitted diseases.

Psychological Unexplained or uncharacteristic changes in behavior such as withdrawal from normal activities, unexplained changes in alertness, etc. Caregiver isolates elder (does not let anyone into the home or speak to the elder). Caregiver is verbally aggressive or demeaning, controlling, overly concerned about spending money, or uncaring.

Exploitation Lack of amenities a victim could afford.

a

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Vulnerable elder/adult “voluntarily” giving uncharacteristically excessive financial reimbursement/gifts for needed care and companionship. Caregiver has control of elder's money but is failing to provide for the elder's needs. Vulnerable elder/adult has signed property transfers (power of attorney, new will, etc.) but is unable to comprehend the transaction or what it means.

Neglect Lack of basic hygiene, adequate food, or clean and appropriate clothing. Lack of medical aids (glasses, walker, teeth, hearing aid, medications). Person with dementia is left unsupervised. Person confined to bed is left without care. Home cluttered, filthy, in disrepair, or having fire and safety hazards. Home without adequate facilities (stove, refrigerator, heat, cooling, plumbing, electricity, and parking). Untreated pressure “bed” sores (pressure ulcers).

National Center on Elder Abuse (n.d.).

Mandated Reporting There is no federal law against elder abuse; however, all states have some form of law or laws against acts of elder abuse. These laws also provide for the reporting of suspected elder abuse. Depending on the state law, healthcare professionals, including doctors, nurses, rehabilitation therapists, and social workers, may be mandatory reporters. Therefore, it is vital that healthcare professionals continually assess for signs of abuse and report when they suspect a problem.

a

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Some organizations have a protocol for reporting suspected abuse of children and elders, and healthcare professionals are encouraged to utilize the system at their workplace. Ultimately, the state and local Adult Protective Service (APS) agencies are the frontline responders investigating reports of abuse. Reports to law enforcement will eventually be connected to APS in most states, so either contact should be appropriate. APS missions vary state to state, but generally focus on protecting the rights of vulnerable adults and adults with disabilities. Long-term care ombudsmen (LTCO) are advocates for residents in long-term care facilities and are responsible for care provided within a geographic region. The LTCO can directly receive reports of suspected abuse or work with APS to resolve elder abuse problems within a facility. For more information about the roles and responsibilities of a LTCO, visit ltcombudsman.org/about/about-ombudsman.

Reporting typically involves giving the name and contact information of the person suspected of being abused as well as specific details related to the suspected abuse. Reporting may also include the reporter giving his or her own contact information. Some states allow for anonymous reporting, in which the states protect the confidentiality of reporters.

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▶ Employment and Civic Engagement The U.S. Bureau of Labor Statistics projects that from 2014 to 2024, the fastest growing segments of the labor force will include workers age 65–74 and age 75+ (Toossi & Torpey, 2017). Although the number of older workers will be fewer than the number of younger workers, their participation rate (i.e., people working or actively seeking work) will exceed that of the entire labor force. The rationale for continuing to work is multifold. People are living longer and want to continue to work because they enjoy it, they want something interesting to do, they want to stay physically and mentally active, and they want to financially support themselves (AARP, 2014). Older workers who remain in the workforce generally occupy management and professional positions, followed by sales and office work, service work, production, and manual labor (Toossi & Torpey, 2017). Not surprisingly, jobs that place wear and tear on the body are less likely to appeal to an aging worker.

Older workers want to remain in the labor force (AARP, 2014). If not for financial gain, they want to engage in productive pursuits that provide meaning and validation to their lives. When asked about the ideal job, workers age 45–74 indicated that their ideal jobs were personally meaningful to them. Specifically, the ideal job would provide the opportunity to use personal skills and talents (92%), include a friendly work environment (92%), offer the chance to do something worthwhile (88%), offer respect from coworkers (82%), and respect from the boss (81%). The ability to work from home (36%), ethnic and racial diversity (40%), opportunity to work part-time (43%), and the opportunity to phase into retirement (53%) were ranked lowest in terms of requirements for an ideal job (AARP, 2014). Clearly, the benefits older workers look for in their work are personal and provide validation for the knowledge and skills they bring into the workplace.

Among workers age 65+, 40% work part-time (Toossi & Torpey, 2017). Ever more employers are now viewing older

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workers as an untapped resource to share experience and expertise with younger workers. The method of utilizing the skills and leadership of older workers is through “bridge employment,” which typically occurs as the older worker transitions from full-time work to part-time work and then into full retirement. Many businesses and professions, now facing skills shortages, are beginning to view the retention of older workers as making good business sense. A retiring person who has been with an organization a long time possesses valuable institutional memory (i.e., understanding of the processes and decisions made in the past), which needs to be passed on to new personnel. Preserving organizational history is prompting some employers to seriously consider allowing loyal older workers to continue on a part-time basis, at least as they transition into retirement (Ng & Law, 2014).

Workplace Discrimination The U.S. Age Discrimination in Employment Act (1967) prohibits employment discrimination against people age 40+. Yet, despite its existence, at least 60% of workers (age 45+) report being discriminated against in the workplace because of their age (AARP, 2014). Extensive research has been conducted on social attitudes toward older workers. Many employers and employees inaccurately perceive older workers to be rigid, inflexible, incapable of learning new skills, unproductive, and overpaid. It should, therefore, come as no surprise that the most common type of economic discrimination against older adults has been work related (AARP, 2014; Palmore, 1990). Research indicates that 80% of adults believe that most employers discriminate against older workers in hiring or on the job, and 61% of employers admit to doing so (AARP, 2014; U.S. Senate Special Committee on Aging, 1991). Discrimination against older workers ignores several overall advantages to hiring them, including low absentee rates, less turnover, low accident rates, less alcohol- and drug addiction-related issues, increased job satisfaction, and company loyalty (Palmore, 1990). Additionally, the experiences, knowledge, and insight older workers bring to the workplace are invaluable and cannot be

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easily replaced by a younger person with a limited work history who is working for lower wages.

Some employers believe that older workers are unable to keep pace with change and learn new technologies (AARP, 2014). For example, they may think that computers and computer software are far too difficult for older adults to learn to operate proficiently. Based on this assumption, employers are less likely to consider hiring older workers. However, evidence exists that older adults can and do learn new technological skills, including computer technology. According to adult learning theory, the learning strategies and styles of older adults may be different from younger adults, but they have the ability to learn and can become quite accomplished when given the opportunity to learn and study in a way that works for them (Knowles, 1984).

Work discrimination against older adults is most obvious when companies attempt to reduce costs by asking older workers to take early retirement, even seducing them into it by offering a tempting retirement package. The offer may initially appear to be a good financial move but may shortchange the worker of retirement income if not invested and managed wisely.

Retirement Before the industrial revolution, retirement as a phase of life did not exist. Individuals worked until they became either disabled or too frail or infirm to do otherwise. They generally died shortly afterward. If they did live a long life, they were usually supported by family or by some charitable organization such as the local church. It was only in 1889 that Chancellor Bismarck of Germany established retirement for individuals reaching age 65. He chose the age of 65 as the beginning of retirement by adding 20 years to the then normal life expectancy of 45 years. Other European countries soon followed with similar retirement systems. In 1935, the United States was the first country to establish a nationalized pension system for people age 65 and older (Dewitt, 2010). Since then, other countries have followed suit, and today most offer a national pension to adults age 65 and older. Variations in the age of eligibility range about 5

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years, with most notable differences between males and females. Some cultures stipulate that women cannot occupy the same positions as men or are required to step down from such positions at a younger age than a man, thus explaining differences in retirement.

Until 1967, retirement was compulsory for workers in the United States who reached age 65, regardless of their health status or abilities. Here again, we see another myth of aging that implies there is a general loss of ability that begins around age 65 or even earlier. However, in typically aging adults, there exists no sudden or general loss of ability at age 65 or at any other age (Palmore, 1990). Any losses that may occur among those aging typically generally do so gradually over many years. Even some disorders considered inevitable as we age (such as visual and hearing impairments) are now reversible or at least amenable to correction. Because of better health status, today's retirees can potentially spend 20 or more years in retirement (AARP, 2014). Many older adults continue working in the same or some new capacity, even after reaching retirement age. In sum, retirement is a stage of life that for some people begins with a change in employment status.

Preparing for retirement is not a task that should be taken lightly or without preparation (FIGURE 2-6). Retirement requires planning, planning, and more planning. And despite what the television commercials may say, it is not all about finances. Important considerations in the retirement decision- making process include:

Financial and social resources Spouse's/partner's retirement plans Desire to continue working (e.g., part-time, full time, or on a flexible schedule) Need or desire to remain active in one's current profession Interest in starting a new career (reinventing one's self) Desire to volunteer and potential volunteer opportunities Desire to remain living in the same community (or to move)

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FIGURE 2-6 Many older adults continue to share their skills and expertise with the community after they retire.

© Kidstock/Blend Images/Getty Image

Prior to retirement, some older adults begin developing hobbies or spare time occupations to engage in during retirement. Many daydream about being able to putter around their home and spend considerable time in their gardens, although good ideas, hobbies, and household activities are generally not intensive enough to fill the hours in a day (Allison, 1996). As many older adults with a few years of retirement behind them frequently offer, you cannot just retire; you have to retire to something. Some older adults are determined to challenge themselves in pursuit of some activity that few, regardless of age, would choose to follow. Mary Harper, a 79- year-old great-grandmother, is one person who rose to such a challenge. Ms. Harper became the oldest person to sail across the Atlantic single-handedly. Although she broke a rib in severe weather, she later said, “The whole trip was worth it just to see the waves.” In answer to why she did it alone, she explained that “it was something I wanted to do … but didn't want to be responsible for a crew” (Bennett, 1994). Another older adult who has refused to settle down to “quiet old age” is former U.S. President George H. W. Bush, who completed a skydive jump on his 80th, 85th, and 90th birthdays (Dooley, 2014). Some individuals continue to engage in lifelong passions. Such is the case for long-distance swimmer Diana Nyad. At age 64, she became the first person to complete the 110 mile ocean swim

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from Florida to Cuba (Associated Press, 2013). David Morrison of Milgrove, Ontario, Canada, had earlier in life performed folk music in local coffeehouses with friends Judy Lanza and the now famous actor Eugene Levy. A year prior to retirement, Morrison bought a new guitar and took up singing lessons. Three weeks after retiring as vice president of executive development for TD Bank, Morrison was on the verge of becoming a public performer again (Clements, 1993). Advocacy Groups

Advocating for the rights and needs of older adults at the local, state, and national levels can be a daunting task. However, as increasing numbers of individuals reach the age of 65, the voices of advocates are becoming louder and stronger. This should come as no surprise because older baby boomers fought for the rights of disempowered groups in the 1960s and 1970s. Their involvement in civil rights, gay rights, and the feminist movement was generation shaping.

Three advocacy groups that help represent the needs of older adults are profiled in this section. The most recognizable organization that has demonstrated considerable success in representing the needs of adults age 50 and older is AARP, a nonprofit, nonpartisan organization. It was founded in 1958 as the American Association for Retired Persons with the agenda of addressing the social needs of retirees. Today, known as AARP (2017), it has expanded its scope of interests to include all aspects of life. In 2017, it boasted a membership of nearly 38 million people. The mission of AARP is simple: “To enhance the quality of life for all of us as we age.” AARP advocates for social change through information, advocacy, and service as it represents adults of all ethnicities and cultures within the United States. All its publications (magazine, bulletins, and website) are instilled with the attitude that age is merely a number and life is what you make of it. Together with the AARP Foundation, research on topics of current interest, including prescription drug costs, grandparents raising grandchildren, and civic participation, is funded to generate information that can be used to promote positive social change.

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The Gray Panthers was founded in 1970 by Maggie Kuhn and six other women who came together to discuss and address the issue of forced retirement at age 65. However, the first issue taken on by the fledgling organization was not age discrimination but rather opposition to the war in Vietnam. This was because the Gray Panthers did not want to be perceived as an organization that was only dedicated to fighting ageism. The Panthers believed philosophically that “gray power” should be on the cutting edge of social change by working with other organizations to “work for social and economic justice and peace for all people” (Gray Panthers Twin Cities, 2017). In 2015, the Gray Panthers reorganized and became the National Council of Gray Panthers Networks—a coalition of informal groups armed with national intergenerational support and organizational values that continue to honor maturity, unify generations, and actively engage in democracy to “create a humane society that puts the needs of people over profits, responsibility over power, and democracy over institutions” (Gray Panthers Twin Cities, 2017).

A third organization founded to address workplace and retirement issues is Senior Service America (SSA), once known as the National Council of Senior Citizens, founded by the American Federation of Labor and Congress of Industrial Organizations (AFLCIO) in 1961. Today, the organization's fundamental purpose is broader than the scope of retirement because the group advocates for political and legislative issues that affect older adults. Legislative issues that received the organization's attention in past years have included the OAA, Medicare, Medicaid, and employment training opportunities. Today, the SSA updates members through newsletters that report on how Congress is addressing the needs of older adults. The SSA and its partner organizations also provide employment and training opportunities to more than 10,000 adults nationwide (Senior Service America, 2017).

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▶ Summary The aging process begins the moment we are born and continues as our bodies and minds grow, develop, change, and mature. Gerontology is the scientific study of aging that examines the biological, psychological, and sociological (biopsychosocial) factors associated with old age and aging. The foundation for social science research in gerontology includes three theories about aging: disengagement theory, activity theory, and continuity theory. While none of the theories can explain social aging completely, each one helps inform our historical perspectives.

Ageism, a systematic stereotyping of and discrimination against people who are old, fosters the notion that older adults are not useful or valued. Ageism is fueled by numerous myths regarding aging and older adults as well as by language that conjures negative images of old persons. Ageism limits opportunities (employment and workplace discrimination) and access to health care and in its worst form can lead to elder abuse, mistreatment, and neglect.

Research has shown that healthcare professionals are significantly more negative in their attitudes toward older patients than they are toward younger patients. To avoid, even inadvertently, making ageist comments and remarks, it is important to recognize and explore your own feelings and attitudes as a healthcare professional. Stopping the spread of ageism is everyone's responsibility, and starts at the individual level.

The media regularly perpetuate the stereotypes of older adults through inaccurate and sometimes demeaning portrayals of older adults in print, advertising, and entertainment. This is puzzling, considering that older adults have the ability to purchase the advertisers' products that sponsor these media activities. Nonetheless, limited efforts continue to be made to accurately depict the daily lives of older adults through the media.

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Social roles continue to be important in later life. However, relationships are sometimes dissolved as a result of poor health, limited mobility, and the inability to reciprocate support. Relationships with close family and friends are maintained before others because they are the source of most support. Some couples find later life to be a time of closeness after weathering life's storms together, some choose to separate and go their own ways, and some remain single and seek support from fictive kin. Relationships between aging parents and adult children tend to be as varied and challenging as spousal relationships, yet families can generally be counted on to provide support. Maintaining friendships continue to promote psychological well-being well into old age. Grandparenting has been, and remains, a rewarding and fulfilling experience in later life.

Attitudes toward work and retirement vary greatly as do the lifestyles of older adults. Many older adults choose to continue to work after retirement age because it not only provides a source of income, but also allows them to engage in productive pursuits that provide meaning and validation to their lives. For other individuals, retirement heralds the chance to pursue a special interest or hobby they never had time to do while working. Some people see it as an opportunity to travel or return to school to pursue a second career, whereas others view it with a bit of disappointment, especially if they previously held an influential position. For most individuals, however, retirement is a time of relaxation to be spent with spouse, children, grandchildren, and/or friends.

Several organizations advocate for the rights and needs of older adults at the local, state, and national levels: AARP, National Council of Gray Panthers Networks, and SSA. All three organizations were founded more than 40 years ago with the mission of bringing about social changes for older adults.

Understanding the social factors that affect older adults is essential when providing care. By developing an appreciation for the diverse backgrounds of older adults, we can better tailor interventions and meet clients' or patients' needs. Moreover, appreciation for social gerontology can only enhance how we interact with our own family members and think about our personal needs as we age.

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CASE STUDIES

Case 1: John and Jason are both 68 years old and have been an exclusive couple for 33 years. Although they cannot legally marry in their state, their lives are inextricably interwoven, even though many people are not aware of their relationship—only a handful of close friends know. John is a banker and commutes daily into the city to work. Jason is an instructor at a local community college and generally walks to his office. They have kept their relationship relatively secret because they fear that others will “out” them, which they fear will force them to leave the careers they adore. One day, Jason suffers a severe stroke and their carefully constructed world begins to unravel. As gay men, neither is provided the rights of a spouse in terms of overseeing medical care, and John is quickly pushed aside at the hospital as the staff ask who the next of kin is. As days go by, John remains at Jason's side, and one nurse in particular repeatedly makes comments about the two old gay guys and how they don't deserve her time or care. A doctor pulls John aside and advises him to start looking for a nursing home for Jason. The thought of losing Jason and placing him in a nursing home is more than John can bear. He believes the nursing home staff would be no different than the hospital staff and would not accept the men's relationship. John decides to quit his job to care for Jason at home. When his boss asks him why he is leaving, John lies and says his mother's health is failing and she needs him. The first 3 months of care go relatively well, but as Jason's health declines, John recognizes he needs help and a break from caregiving, but feels he has no one to turn to.

1. How are John and Jason's challenges in providing Jason with care different from the challenges faced by a heterosexual couple?

2. What challenges do healthcare professionals face in providing care to same-sex couples?

3. What can healthcare professionals do to help couples like John and Jason successfully manage their healthcare challenges?

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Case 2: Barbara, age 42, is a lucky woman, or at least that is what everyone tells her. She has an adoring husband, smart children, a career as a store manager, and impeccable taste in fashion. Barbara has always been an excellent multitasker and has successfully balanced her marriage, family, and career for 20 years. She makes every task look effortless. So, when her mother started having health problems, Barbara was sure to set aside the time needed to help. She always assumed she would be the best one to help her mother, even though she lived 200 miles away, because she was reliable and dependable. Barbara has a brother and sister who could probably help, but they have their own careers and families and they are just fine letting Barbara take over. They trust Barbara. After a few months, Barbara thought that being a long- distance caregiver was not that hard. She struggled a bit at first, but soon organized all the information she needed about her mother's health problems and care. She was in touch with doctors on a regular basis and authorized whatever care was needed. Soon, she started managing her mother's finances. It did not cross Barbara's mind to call her siblings to update them, and they did not think to call her. Barbara was pleased that she could provide for her mother from a distance. Although long-distance caregiving was not convenient and often forced her to change her plans, she could not imagine not being available for her mom. One day, Barbara received a call that her mother had been hospitalized. She called her sister and they agreed to meet at their mother's home and travel together to the hospital. Secretly, Barbara was glad to meet with her sister because she was getting tired of having the extra burden of her mother's life on her shoulders alone. Last week at work, the regional manager told her that her enthusiasm and work performance had started to slip. Even her husband had made a few comments that she did not seem to have the time for him and their children anymore. Barbara knew things needed to change, but just was not sure what to do.

1. What should Barbara do and why? 2. What steps does Barbara need to take to ensure her

own needs are being cared for?

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Test Your Knowledge

Review Questions

1. _________________ is the scientific study of aging that examines the biological, psychological, and sociological factors associated with old age and aging.

a. Geriatrics b. Pediatrics c. Oncology d. Gerontology

2. The first psychosocial science theories on aging included

a. Activity theory and disengagement theory b. Continuity theory and social role theory c. Activity theory and social role theory d. Disengagement theory and caregiving theory

3. Providers who view older adult patients sympathetically as “poor old dears,” who can do little to care for themselves, are diminishing the value they place on their patients' abilities.

a. True b. False

4. Skip-generation households refer to a. Teenagers caring for their ailing parents b. Parents caring for children as well as aging parents c. Grandparents acting as surrogate parents to their

grandchildren d. Grandchildren caring for ailing grandparents

5. A typical victim of elder abuse is a. Female and over the age of 75 b. Living alone and lacking a network of social

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support c. A & B d. None of the above

Learning Activities

1. Using your own experiences and observations, formulate a social theory on aging. How does it compare with the social theories described in this chapter?

2. Provide examples of ageism you have seen in your own family, in your community, in the media, in your travels, and/or in your workplace.

3. Explain the value of social connections in late life and provide examples of how an older adult can maintain connections to other people.

4. Discuss some of the issues and concerns of a grandparent raising a grandchild. What steps, if any, can a healthcare professional take to support them?

5. Develop a scenario in which a vulnerable older adult could potentially become a victim of two or more types of elder abuse. Describe the steps a healthcare professional can take to uncover a potential problem.

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CHAPTER 3 Aging in Place and the Continuum of Care Ann O'Sullivan, OTR/L, LSW, FAOTA Nancy Brossoie, PhD Regula H. Robnett, PhD, OTR/L, FAOTA

CHAPTER OUTLINE

INTRODUCTION

AGING IN PLACE Independence Productive Aging Competency Person-Centered Care Technology-Based Services Universal Design Continuum of Care Independent Living

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Active Adult Communities Naturally Occurring Retirement Community Village Model Subsidized Senior Housing

Congregate Living Arrangements Cohousing Shared Homes

COMMUNITY-BASED SERVICES AND SUPPORTS Home and Community-Based Services Home Health Services Program of All-Inclusive Care for the Elderly Aging Network Services

SERVICE-ENRICHED COMMUNITIES Continuing Care Retirement Community Assisted Living Facility Nursing Facilities Rehabilitation

PERSON-CENTERED APPROACHES TO INSTITUTIONAL CARE

Hogeweyk Eden Alternative

SPECIAL TOPICS AND ISSUES Telehealth Paying for LTCSS Homelessness Home Modifications Reverse Mortgages

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

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1. Define aging in place and describe the benefits of aging in place.

2. Discuss the connection between housing, health care, and least restrictive environment.

3. Compare and contrast housing options along the continuum of care.

4. Discuss the role of person-centered care along the continuum of care.

5. Describe how technology has impacted health care, especially for older adults.

6. Discuss ways that health care professionals can support aging in place and productive aging with their clients.

KEY TERMS

Accessibility Activities of daily living Adult day services Aging in place Assisted living facility Assistive technology Chore services Cohousing Competency Continuing care retirement community Eden Alternative Gerotechnology Home health Instrumental activities of daily living Least restrictive environment Long-term care insurance Meal services Medicaid Naturally occurring retirement community Nonmedical home care services Person-centered care Physiatrists

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Productive aging Program of All-Inclusive Care for the Elderly Rehabilitation Reverse mortgage Shared housing Telehealth Telephone reassurance Transportation Universal design Village model

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▶ Introduction Sentiments such as “There is no place like home” and “Home sweet home” can elicit pleasant memories and emotions when reflecting on homes and communities we claim as our own— attachments that can persist despite not living in those same places. Our home (be it a specific house or location) provides us with a sense of place that can connect us to a community greater than ourselves. But, most importantly, home is also the place that facilitates independence and the quality of life we embrace, especially when it includes modifications and supports that promote our health and well-being (Rowles & Ravdal, 2002).

The connection between home (however we personally define it) and health is well established and significant (Ball, 2004). Research across the life span has shown that living in safe and familiar surroundings with personal ties to the community contributes positively to good health, well-being, and quality of life. The healing and supportive power of home and community is strong!

With increased recognition of the connection between health and home, efforts over the last 30 years have become more intentional and widespread in providing services to people in the community where they live. In more recent years, the term aging in place personifies this approach and is considered the best option for managing the health care needs of the growing population of older adults.

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▶ Aging in Place Aging in place is typically defined as the ability to remain in one's own home or community as one ages (Centers for Disease Control and Prevention, n.d.). By aging in place, the benefits of remaining connected to home (house or location) can support the acute care needs and the compression of morbidity (i.e., reduction of the period of illness before death; Fries, Bruce, & Chakravarty, 2011), thereby shortening the length of time in institutional care and extending time spent living at home and in the community.

Critics of the aging in place concept have argued that not all older adults should stay in their homes as doing so would be detrimental to their health. For example, individuals who live in squalor, have cognitive impairments, self-neglect, or suffer abuse by household members would be sentenced to ongoing discomfort if they remained in their current situation. Proponents would agree and reiterate that the meaning of aging in place is not limited to the current residence or situation. For a person perceived as at-risk for staying in their home, remaining in the community in a new supportive living environment would be more beneficial, because communities hold the same cultural and social norms and behaviors that the individual embraced. Even within a long-term care setting, an older adult can remain engaged in the local community's culture and connections through staff and visitor interactions, and on-site activities. Thus, older adults who choose not to remain living in their current residence, can still age in place and do it quite successfully.

The notion of aging in place aligns well with how many older adults are already thinking about their futures. An AARP survey in 2014 (Harrell, Lynott, Guzmann, & Lampkin, 2014) revealed that among adults age 65+, 87% of respondents reported they intend to remain in their current homes for as long as possible. However, among persons age 50–64, only 71% were willing to remain in their communities. Reasons for the

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decrease were largely attributed to low-income respondents representing people of color living in metropolitan areas. Still, the intentions expressed by both groups support the general concept of aging in place.

The decision to age in place also supports an older adult's ability to remain as independent or autonomous as possible. The World Health Organization (2015) has identified autonomy as key priority for quality of life in aging, impacting dignity, integrity, freedom, and independence. Making choices about how one lives and controls how his/her basic needs are met is integral to achieving life satisfaction, well-being, and quality of life.

Independence Like people in all age groups, older adults value their independence (MacDonald, Remus, & Laing, 1994). Nevertheless, how they define it can sometimes vary. In a study examining the link between housing and health, the study findings suggested that some people viewed independence as meaning they lived comfortably without needing regular assistance from anyone else, or that they lived in their own home and maintained the ability to make their own decisions. Yet, some participants shared a modified view by suggesting that maintaining independence could include accepting some help from families and friends but without becoming a burden.

One responsibility of health care practitioners is to facilitate the independence of persons under their care. With providers respecting their independence and freedom of choice, clients can regain mastery over their lives (Minkler, 1992). Therefore, it is imperative that practitioners ask clients what independence means to them, and then honor their goals toward reaching independence while supporting their efforts in working toward treatment goals.

When an individual requires assistance to complete their activities of daily living (ADLs; e.g., bathing, toileting, dressing, eating, walking) and instrumental activities of daily living (IADLs; e.g., housekeeping, budget management, using a telephone), a key therapeutic goal is to provide those supports in the least restrictive environment possible. That is, individuals

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should be provided the opportunity to live in an environment that provides them with the opportunities to function as normally as possible and be as independent as possible (a tenet of the continuum of care discussed later in this chapter).

Productive Aging The ability to remain independent, active, and as high functioning as possible are core values associated with aging in place and productive aging—a term that refers to making valued contributions to one's life by engaging in enjoyable, meaningful, and useful activities (Kerschner & Pegues, 1998). Remaining productive through active engagement, physical activity, and pursuit of cognitive challenges is also associated with longevity (Terracciano et al., 2008). That is, people who live productive lives tend to live to the oldest ages. Although the scope and type of activities one can and might engage in as one ages may differ from those experienced earlier in life, engaging in them continues to benefit the body, mind, and spirit, and promote healthy and successful aging.

Competency Promoting independence and productive aging is not always easy for the health care practitioner. The issue of competency can arise when supporting some older clients. In the course of providing support, health care professionals may question a client's behaviors and choices and their ability to comprehend the consequences of their actions, especially when those actions can place them or others at risk. Practitioners find themselves questioning a client's cognitive ability or competency to make decisions and may seek advice from other providers on how to proceed. Yet, competency is not for them to decide alone. Competency is a legal determination and only the court can determine if an individual is incompetent to make their own decision. Thus, until incompetency has been declared and a guardian appointed to oversee their care and services, practitioners are bound to respect their clients' choices and work with them to provide services and supports that align with their preferences, even if these conflict with the practitioner's choices.

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Person-Centered Care Respecting client wishes is a cornerstone of client-centered or person-centered care. The notion of providing care that meets the therapeutic needs of the individual rather than engaging in prescriptive care originated in the 1940s with psychologist Carl Rogers (Kirschenbaum, 2009). Clinicians used Roger's work to develop practical methods for working with clients with psychological, emotional, and social adjustment problems. Use of the person-centered approach gained widespread attention, and by 1980 advocates for people with intellectual and developmental disabilities started promoting its use nationwide as the foundation for person-centered planning in service delivery (Kirschenbaum & Jourdan, 2005). Today, many intake assessments administered to clients prior to entry into services and programs utilize a biopsychosocial approach to better understand an individual's needs, which is the first step to offering person-centered care services in the least restrictive environment.

Technology-Based Services Person-centered care includes not only personal services, but also assistive technology (AT; i.e., assistive, adaptive, and rehabilitative devices that help users complete ADLs, IADLs). AT includes any product that is used to increase, maintain, or improve the functional capabilities of individuals needing specialized help. Examples of AT range from low tech (e.g., a dressing stick, sock aid, or spork [spoon /fork combination]) to high tech (e.g., smart home technology to regulate temperature, lighting, and security; medication dispensers; and monitors). AT can also be portable (e.g., hearing aids, smart phones, communication boards) or built into the environment (e.g., raised toilet, adjustable height sink, levered doorknobs). The type of AT utilized depends on the needs of the individual. As functional levels change, the AT used should also adapt to meet new needs so that the individual can remain as high functioning as possible. (Assistive Technology Industry Association, n.d.).

Gerotechnology is a term used to describe a professional field that focuses on technology specifically designed to support

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older adults. Developers in Asia, Europe, and the United States have taken the lead in using technologies to provide products that promote the health and welfare of older people. For example, a compact freezer/oven combination unit that can hold up to a month's worth of frozen meals was developed in Finland. All the user has to do is remove the meal from the freezer, place it in the oven, and push one button to cook the “home-cooked” meal. In Asia, where the older population is rapidly growing in size, researchers are seeking ways to utilize gerotechnology to meet the needs of large numbers of people with as little human assistance as possible. Specifically, researchers are currently developing vending machines that can dispense prepackaged hot and cold single container meals. In Japan, scientists have designed rooms with robots that take care of the people living in the room by monitoring their vital signs and even anticipating basic needs such as thirst or hunger (Dethflefs & Martin, 2006; Saunders, 2012).

Similarly, in the United States, the MEDCottage is now being produced (N2Care, n.d.). MEDCottage is a modular home intended to be temporarily placed on a caregiver's property to house an individual needing oversight or assistance. The state- of-the-art monitoring equipment installed in the MEDCottage permits basic health functions to be monitored and tracked, affording privacy and independence to the resident. Not only does this portable unit provide medical support, it also helps the resident age in place and stay connected to family, friends, and community.

Technology is playing an ever larger role in health care, from wrist monitors that monitor vital signs 24/7 to avatars (i.e., virtual humans) that can guide older clients through the exercises taught to them by their physical therapist (Halloran, 2018). Other creative technological solutions currently under refinement for use outside the home and in the provision of services include virtual care coordinators, wellness communication platforms, and autonomous vehicles.

However, the products produced by gerotechnology may not be the panacea envisioned. There is little doubt that older adults can benefit from technology, but the products cannot replace the social interactions that emerge during direct contact

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with care providers. Heavy reliance on products can potentially be isolating. For example, an automated stuffed animal used for cuddling and social interaction cannot quite compare to engaging in human touch and conversation, even though it might superficially help improve mood. Also, individuals may perceive being watched or listened to continuously by electronic devices as intrusive and violating their personal space, interfering with their independence and ability to have a choice in how they live. Therefore, the judicious use of technological advances to make life easier and healthier is warranted. Continuous feedback can ensure its use is appropriate and acceptable to the client.

Universal Design Clearly, AT can make life easier for many individuals and their families. Yet, for people of all ages, what is needed most are changes in how products and environments are designed. Universal design addresses those needs. Universal design is “the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability” (Centre for Excellence in Universal Design, 2014a). Simply put, universal design is good design. Products and environments that represent universal design are guided by seven principles (Centre for Excellence in Universal Design, 2014b):

1. Equitable use

2. Flexibility in use

3. Simple and intuitive use

4. Perceptible information

5. Tolerance for error

6. Low physical effort

7. Size and space for approach and use

An example of a product in everyday use in which universal design principles are utilized is the lever door handle. Compared to a traditional round door knob, a level door handle requires less manual dexterity and is easier to operate by

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individuals with arthritis or upper extremity weaknesses. Moreover, lever door handles are easier to use when carrying groceries or small children, or wearing gloves or mittens.

Buildings that incorporate universal design principles that enable people of all abilities to navigate without special accommodation can include features such as access ramps, one- story construction or single-level living areas, antiglare and nonslip floor finishes, easy-to-reach electrical switches and outlets, levered faucet handles and door knobs, and automated smart home technology (i.e., wireless and sensor controlled heating, cooling, lighting, security).

In the home, entryways are frequently modified using universal design features (FIGURE 3-1). Built environments that incorporate universal design facilitate engagement in daily life, which in turn promotes independence, personal well-being, and quality of life.

FIGURE 3-1 Objects that incorporate universal design principles enable people of all abilities to use them without special

accommodation. © James Brey/iStock/Getty Images Plus

Even though universal design features promote accessibility (i.e., the ability to navigate through an environment), the two terms are not interchangeable. The existence of accessible buildings and environments for everyone in the United States can be credited to the passage of the Americans with Disabilities Act (ADA) in 1990. Not only did

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the ADA guarantee that persons with disabilities have the same opportunities at work, school, and in the community as everyone else, but it also became the legal foundation for standards and guidelines in the built environment to accommodate the needs of people with physical and sensory challenges. For example, ADA guidelines and standards include requirements for the width of door frames and hallways to accommodate wheelchairs, no-rise thresholds, structural requirements of access ramps, and auditory and visual cues added to alarm systems, to name a few. State and local building requirements can differ from ADA standards only if they result in more stringent standards. A copy of the 2010 “ADA Standards for Accessible Design” can be found at www.ada.gov/2010ADAstandards_index.htm.

Continuum of Care One way to think about and support older adults and their physical, emotional, and social needs is through a continuum of care service delivery model. The model provides a way to connect types of housing (i.e., general community housing, lifestyle housing, and service-enriched housing) with healthcare services in a way that supports aging in place in the least restrictive environments possible (FIGURE 3-2). Individuals may advance through the model by changing their living environments when healthcare needs become more intensive. Components of the continuum of care are presented next in this chapter by following the model moving from the least restrictive (independent living) to most restrictive (nursing home).

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FIGURE 3-2 The continuum of care. Reproduced from MetLife Mature Market Institute. (2010a). Aging in Place 2.0: Rethinking

solutions to the home care challenge. Retrieved from

www.metlife.com/assets/cao/mmi/publications/studies/2010/mmi-aging-place-study.pdf

Independent Living Understandably, the most desired living situation is an independent living arrangement in the community. Ideally, the option to live independently should exist for as long as possible. Types of housing that promote independent living include the same options available to adults at any age (e.g., apartment, townhouse, single-family dwelling, etc.).

There is one age-restricted independent living option that caters specifically to older adults—retirement communities. Retirement communities can range from publicly accessible housing developments to gated communities with keyed access. Housing options in a retirement community can be diverse and may include single-family homes, mobile homes, or space for parking motorhomes. Regardless of housing type, acceptance into a retirement community is generally based on age (e.g., age 55 and older) or retirement status. Many retirement communities

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charge a monthly homeowner's association fee to cover costs for community landscaping and upkeep, community center activities, and property management costs.

The first and possibly the most famous retirement community in the United States was Sun City, Arizona, developed by Del Webb (Recreation Centers of Sun City, Inc., 2016). The first model homes in Sun City opened in 1960 and 2000 homes sold in the first year. In the years that followed, more Del Webb retirement communities opened across the U.S. sunbelt, where many retirement communities are located today. Sun Cities were unique because they offered more than independent living to residents, they offered an active leisure lifestyle.

Active Adult Communities Sun City, Arizona, is also a model of an active adult community. It was intentionally designed to provide all the amenities a person age 55+ could use without leaving the community. The original development included recreational facilities, stores, and a post office, which expanded to include churches, medical care, and a long-term care facility. The notion of retiring to an active adult community in a warm sunny climate continues to appeal to many people. However, active adult communities like Sun City require that residents have the financial resources to purchase their homes and pay fees, which is out of reach for the majority of older adults.

Not all active adult communities are intentionally designed like Sun City. Some emerge out of an existing community or neighborhood as residents' age in place or older residents move into available housing units. Three other examples of active adult communities are described in this section: naturally occurring retirement communities, Village model, and subsidized senior housing. Naturally Occurring Retirement Community

A naturally occurring retirement community (NORC) is a demographic term used to describe a neighborhood, multiunit dwelling (e.g., apartment building), or group of buildings (e.g., apartment complex) in which the majority of residents are older

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adults. NORCs are not designed to be retirement communities, they just evolve into areas in which the majority of residents are older adults. NORCs tend to be located in densely populated areas and the majority of NORC residents have called the area home for many years (United Hospital Fund, 2015).

The evolution of a community into a NORC community occurs over time. As residents age, they first look to each other to get their needs met. As needs increase, these small group efforts unite to form a NORC program to better serve the needs of all residents. NORC representatives often work with the local housing and transportation authorities and health and social service providers to gain better resident access to local services and supports. Some services may be provided for a fee, which the member pays when accessed. NORCs may also receive public and private funds to sustain programming and support current and future residents' ability to age in place. TABLE 3-1 is an example of the range of services and supports provided by one of the 54 NORCs in operation in the State of New York (New York Department for the Aging, 2017). The descriptions of some of these services are provided in subsequent sections in this chapter.

TABLE 3-1 Services Provided by a NORC in New York City

Senior Center: EDUCATIONAL ALLIANCE COOP VILLAGE NORC

Address & Phone Number

Hours Services Offered

465 GRAND STREET NEW YORK, NY10002 (212) 358-8489

MONDAY 9:00–5:00 TUESDAY 9:00–5:00 WEDNESDAY 9:00–5:00 THURSDAY 9:00–5:00 FRIDAY 9:00–

NORC CASE ASSISTANCE NORC EDUCATION/RECREATION NORC FRIENDLY VISITING NORC HEALTH ASSISTANCE NORC HEALTHCARE MGT NORC NE HEALTH PROMO

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5:00 NORC TELEPHONE REASSURE NORC TRANSPORTATION NORC-SSP CASE MANAGEMENT

How to Get There

For information on how to get to this Senior Center, visit the Maps page on MTAs website or call MTAs Transit and Travel Info Line at (718) 330-1234.

Data from New York Department for the Aging. (2017). NORC services. Retrieved from

https://a125-egovt.nyc.gov/egovt/services/service_detail.cfm?

contract__cont_dfta_id=N3101

In St. Louis, the Jewish Federation partnered with Washington University to study the needs of older adults in a local NORC. The team recognized the need for wellness programming, social activities, resident councils, and information exchanges. Moreover, a transportation program was also launched to help residents with their grocery shopping. However, when the residents shared that they really wanted transportation to attend cultural events instead (because they were already getting help with groceries), the transportation program was revamped to offer popular day trips. As this example illustrates, NORCs are designed to be receptive to resident needs by bringing services and supports rather than requiring that they move to be closer to the services they need (Opp, n.d.). Village Model

The Village model originated in Beacon Hill, Massachusetts, in 1999, and has since expanded to over 270 communities in the United States, Australia, and New Zealand (Village to Village Network, n.d.). The Village model is a resident-governed community service and support model. Members live in their own homes but work with other Village members to coordinate needed nonmedical services and care they might need (e.g., transportation, chore service). As a member's needs increase, the

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Village works with them to identify resources and connect with services and supports in the community.

Like other congregate housing options, engagement with other members in the Village can help reduce social isolation, promote relationships and interdependence among members, and reduce overall healthcare costs. Moreover, they are similar to NORCs, in that they help older adults obtain needed health and social services in order to increase their ability to age in place. Yet, unlike NORCs, Villages are formed and governed by members and funded by annual membership dues rather than fee-for-service programs or grants.

Homes of members enrolled in Villages can be located in small or large geographic areas. Regardless of location, members commit to collaborating with one another through volunteering, establishing group service contracts with providers, advocating for the needs of older adults, and organizing educational and social events (Greenfield, Scharlach, Graham, Davitt, & Lehning, 2012).

Challenges with sustainability at Villages are shared by other cohousing models. Funding sources are decreasing and members are struggling to maintain services and supports on their limited incomes. Recruiting residents that represent a diverse population is also difficult. In cohousing, residents are generally recruited by word of mouth, which results in a membership that is not racially and economically diverse. The same exclusivity also limits the recruitment of young members who are needed to sustain the community (Lehning, Davitt, Scharlach, & Greenfield, 2014). Subsidized Senior Housing

Subsidized housing programs are funded through the U.S. Housing and Urban Development (HUD) and implemented at the state and local levels. In 1959, HUD created a housing program (Section 202) specifically for housing older adults. Since then, funds have been allocated to provide monies to build multiunit senior housing structures and to supplement the monthly rents paid by residents (HUD, n.d). In 2016, older adults constituted at least one-third of all subsidized housing in the United States.

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Unfortunately, need has surpassed the number of available units, in part because funding for construction of new housing complexes has not been available since 2011 (Cisneros & Martinez, 2016). Senior housing sites are age-restricted apartments accepting residents age 62 and older (or lower, depending on the funding source). Apartments are usually one bedroom with a kitchen and a bath. Accessibility features include grab bars, access ramps, and nonskid flooring. Tenants must meet income eligibility requirements that are at or below 50% of the area median income. In 2015, the typical occupant in senior housing was 79 years old and had an annual income of $10,018 per year ($834 per month; Joint Center for Housing Studies, 2017). Rent is calculated by various methods, but does not exceed more than 30% of monthly adjusted income (HUD, 2002). This is the same housing cost standard (i.e., all housing costs should not exceed 30% of the adjusted monthly income) applied to applicants seeking mortgages to buy a home.

Critics of subsidized government housing are quick to point out that eligible older adults are being placed on waiting lists for more than a year before being offered a unit, which may or may not be in their preferred area (National Low Income Housing Coalition, 2016). Additionally, the quality of the housing available is below acceptable standards. Units are not being maintained, updated, or replaced (Cisneros & Martinez, 2016). For persons who are able to access subsidized housing, it can offer an affordable, safe, and secure environment. But individuals who are not able to secure affordable housing that supports their service needs, are at extreme risk of becoming homeless (discussed further in this chapter).

Congregate Living Arrangements Congregate living arrangements may resemble any other apartment or house, offering private bathrooms and kitchen facilities, and with features to support independent functioning (e.g., grab bars, access ramps, nonslip floors). They usually offer group dining, housekeeping, and socialization opportunities and provide at least a minimum level of assistance in accessing personal assistance or health services from an outside agency. By entering into a congregate living

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arrangement, an individual is in a good position to receive needed supports from the housing operator while remaining as independent as possible. More specific examples of congregate living arrangements include cohousing and shared housing. Cohousing

Cohousing is a type of collaborative housing in which residents actively participate in the design and operation of their own neighborhoods (The Cohousing Association of the United States, 2017a). Whereas NORCs develop where people are already living, cohousing communities are intentional communities with private homes and common facilities and operate using consensus governing, shared responsibilities, and mutual assistance.

Early cohousing communities were not designed expressly for older adults. The idea that a child would benefit from being raised by a community shaped the development of the first cohousing community in Copenhagen, Denmark, in 1972. Over the years, Denmark has improved upon cohousing community designs and boasts that 1% of the population live in cohousing communities (Lietaert, 2007).

In 2017, there were more than 150 cohousing communities in the United States (The Cohousing Association of the United States, 2017b). According to a 2012 survey of community leaders (Margolis, 2015), a typical cohousing community population includes people who are White, female, and not married. Over 80% of residents are age 40 or older and 40% are age 60 and older. Approximately, 47% of residents have incomes of $50,000–$99,000 per year, suggesting a middle income appeal. More than one-third (37%) of residents report holding atheist or agnostic religious views compared to 29% of the general population. Most residents have earned college degrees and share a strong connection to nature and spirituality. Activities in the communities are consensus driven and include stewardship of the earth, promotion of renewable energy, and shared empathy for the challenges faced by people around the world.

Communities operate from value statements that guide their development. For example, in New Mexico, Sand River

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Cohousing describes itself with the following value statements (Sand River Cohousing, n.d.):

We respect the diversity of paths to personal growth. Deepening our connections to the natural world and others in the place that we live is a significant part of conscious aging. We live in a respectful, egalitarian community which uses a modified consensus process to guide our decision making. We are creating a peaceful, aesthetically pleasing environment that nurtures a sense of community and individual contentment. We value one another and the expression of mutual caring. We cherish and celebrate our diverse origins, joys, talents, beliefs, and life experiences. We affirm a sustainable future by conserving resources and living ever more lightly on the Earth. We offer service to the larger community both as individuals and as representatives of Sand River.

At ElderSpirit Community in Virginia, the cohousing community was developed specifically for persons age 55 and older. The community includes privately owned homes and apartments for renters, who must qualify as low-to-moderate income households. ElderSpirits mission statement recognizes the importance of spirituality in late life. To that end, “Members believe that spiritual growth is the primary work of those in the later stages of life. Agreeing that freedom of religion is fundamental, we encourage one another in the search for meaning and commitment to the spiritual path of our choice. Through face-to-face relationships, we offer and receive support, express our needs and convictions, listen carefully to each other, and strive to act responsibly, considering our good, the good of the other, and the good of the community” (ElderSpirit, 2017).

A challenge faced by ElderSpirit and other long-standing cohousing communities is that the influx of younger residents to replace older residents is not occurring as quickly as first envisioned. Residents are living longer and healthier. Although that is desirable, the mutual support each resident is able to

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provide the community lessens with age. As a result, the scope and intensity of support the community can provide can decline if young and healthy residents are not integrated into it. Because residents are generally recruited by word of mouth, the membership may not be racially and economically diverse. The same exclusivity also limits the recruitment of young members who are needed to sustain the community (Lehning, Davitt, Scharlach, & Greenfield, 2014). Shared Homes

Unlike cohousing, shared housing is less formal and may take place in any home in the community. In this arrangement, people might share expenses or exchange services for rent. For example, a homeowner needing help might have someone complete the housework and yard chores in exchange for free lodging. An adult might opt to share a home to reduce expenses (e.g., rent, utilities), to share chores, and for companionship. Shared housing arrangements can also be intergenerational. A grandmother could move in with an adult child and contribute to the household expenses or live in exchange for day care or any other arrangement made with the family.

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▶ Community-Based Services and Supports Home and Community-Based Services In an effort to support independence and choice and reduce admission into long-term care facilities (presented in subsequent sections in this chapter), community providers offer a variety of services and supports in the home, which are called home and community-based services (HCBS) and are one aspect of the larger system of long-term care services and supports (LTCSS).

LTCSS include an array of services and supports for people who need assistance to function in everyday life. An estimated 70% of persons over the age of 65 will need long-term care services at some point in their lives (Genworth Financial, 2013). Care services selected can include personal care, rehabilitation, social services, AT, health care, home modifications, care coordination, assisted transportation, and more. Services may be needed on a regular or intermittent basis over a period of days, months, or years. Moreover, they may be delivered in individual homes, in assisted living or supportive housing, in adult day centers, or in nursing facilities or other institutional settings.

The need for long-term care is usually measured by assessing limitations in an individual's capacity to perform or manage ADLs and IADLs. Although it is easy to assume that most older people need a lot of assistance, over 88% of individuals age 75 and older do not need any assistance with ADLs and over 80% have no functional limitations requiring assistance with IADLs (Adams, Kirzinger, & Martinez, 2012)!

Nursing homes and old age homes used to be places where old and frail adults were often sent to live when they started needing help. Today, no more than 5% of persons age 65+ live in institutional settings. More specifically, only 1% of people between ages 65 and 74 and 11% of adults over age 85 live in

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institutions (Administration on Aging, 2016). Most people who need LTCSS, therefore, live at home or in community settings, not in institutions.

The vast majority of adults (78%) in the United States receiving care receive it at home from family caregivers. An additional 14% of care recipients receive a combination of family care (i.e., informal care) and paid help (i.e., formal care); only 8% rely on formal care alone (Thompson, 2004). Still, family caregivers are expected to continue to provide the greatest proportion of long-term care services in the future (Family Caregiver Alliance, n.d.).

Home Health Services When family members are unable to provide necessary and skilled medical care, home health services are typically accessed. Skilled care refers to services requiring a high level of skill, which can only be provided by credentialed professionals, to ensure safe and effective care. In 2014, there were 16,400 Medicare- or Medicaid-certified home care and hospice providers in the United States. Collectively, they offered an estimated 6.3 million patients nursing care, therapeutic services (e.g., occupational, physical, and respiratory therapies, and speech-language pathology services), home health aide services ( i.e., basic health and personal care), case management, and therapeutic counseling (i.e., psychological, nutritional) (Harris- Kojetin et al., 2016). Home health care services are included in a treatment plan only when they are deemed medically necessary. Moreover, only an authorized heath care provider can order them. By offering skilled care at home, health care costs are dramatically less than costs accrued during care in a skilled care facility. Home health care spending in 2015 reached $88.8 billion and the Medicare and Medicaid programs (Centers for Medicare and Medicaid Services, 2016) paid for over 80% of care provided.

Program of All-Inclusive Care for the Elderly One innovative community-based long-term care program that is a reimbursed by Medicare (since 1997) is the Program of All-Inclusive Care for the Elderly (PACE). The PACE model

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was first piloted in San Francisco, California, in 1973, offering services to people age 55 and older needing a level of care normally provided in a nursing home (Tanaz & Anderson, 2009). PACE originated out of public interest to reduce LTCSS expenditures. The PACE model offered care using an alternative setting and approach. PACE developers recognized that older adults wanted to age in place and could benefit from accessing services and supports in their immediate neighborhood. After all, better access should lead to better utilization, better health, and lowered long-term costs.

In 2017, there were 123 PACE programs operating 233 PACE centers across 31 states. These PACE programs collectively served over 40,000 participants (National PACE Association, 2017a). Each program is required to provide all healthcare services “on site” at a capitated (or fixed) rate. That is, the reimbursement for providing care is the same for each participant regardless of their diagnoses or therapeutic needs. This behooves PACE programs to keep on top of the health care needs of each participant on a daily basis.

PACE programs include a comprehensive set of medical and supportive services, including meals, counseling, respite, medication management, transportation to and from the site, and an adult day program. Participant outcomes from attending PACE program have been positive. Participants gained improved health status and quality of life, lower mortality rates, increased choice in how time is spent, and greater confidence in dealing with daily challenges (National PACE Association, 2017b).

Aging Network Services As highlighted in Chapters 6 and 14, the Older American's Act (OAA) continues to carve out federal funds for nonmedical services to support older adults. State and local area agencies on aging and tribal and native organizations are responsible for setting eligibility requirements and implementing services and supports within their service catchment areas. Programs offered reflect local needs, and as such may vary from region to region. Services provided may include nonmedical services such as case

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management, homemaker/companion services, personal care, adult day services (ADS), transportation, and meal services.

Nonmedical home care services offer assistance such as daily care, housekeeping, meal preparation, medication reminders, transportation, and companionship. Individuals providing such services may not need to hold special accreditation to perform their duties (some states regulate service delivery more than others do). Often, the regulations in place are connected to the provider. Specifically, formal (agency) providers are regulated, whereas informal (privately hired) providers are not regulated.

Consumers of nonmedical services are frequently offered the option of hiring and managing the employment of persons providing them with services (referred to as consumer-directed care). Workers might be placed with care recipients through the agency that employed them, they could be independent contractors managing their own work, or they may be hired directly by the care recipient, who in turn manages their employment. Many families directly employ workers to provide care and pay for their services when insurance does not reimburse (referred to as out-of-pocket care costs).

Adult day services (ADS) offer programs of activities, health monitoring, socialization, and assistance with ADLs for individuals requiring daily supervision and oversight. Attendance allows individuals to continue to live in their homes and receive needed care in a supportive, professionally staffed, community-based setting. ADS also benefit family caregivers by providing time away from caregiving to engage in work or receive needed time off (i.e., respite) from caregiving. ADS programs can also offer caregivers educational programs and support groups (MetLife Mature Market Institute, 2010b).

In 2010, 55% of ADS fees were paid through public funding such as Medicaid Home and Community-Based Waiver Programs, Veteran's Administration, and state and local funding. Twenty-six percent were paid privately and the remaining payers split among grants, donations, internal funding, and private insurance (MetLife Mature Market Institute, 2010b).

The use of ADS programs can decrease caregiver stress, so that caregivers can better function in their workplaces and enjoy

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time with their families. Because of ADS, the caregivers studied were better able to deal with problem behaviors, had an improved ability to be adaptable, and showed decreased signs of stress, anger, and depression. They also reported a decreased sense of subjective burden (Dabelko-Schoeny & King, 2010).

More specifically, Zarit and colleagues (2011) found that caregivers' stress decreased significantly on days that the care recipient (who lived with them) was in an ADS program compared to days not in the ADS program. ADS participation also contributed to less disturbing “dementia” behavior and better sleep patterns among attendees. Ultimately, effective ADS programs could help to delay institutionalization for those at risk by providing caregivers needed support so that they could extend the time they are able to undertake this vital role.

In addition to the services already described, HCBS also includes single use and long-term use services such as transportation, meal services, and chore services. In some regions, transportation services are supplemented by volunteer transportation services designed specifically to transport individuals to medical appointments or pharmacy visits. Meal service options include the well-known Meals on Wheels program, in which delivery volunteers are trained to assess recipient health status during their visits and report changes in health status to the agency for follow up. Congregate meal sites are also operated in local gathering spots to offer socialization and activities in addition to a meal. Telephone reassurance programs are designed to support the needs of people who have limited socialization opportunities or do not have family nearby to check on them. Typically, a volunteer telephones the participant each day at a specified time. During the call, they talk about the recipient's health, any unmet needs, and plans to go into the community that day. Again, if a volunteer suspects problems, they report back to a designated person for follow up. The value of each of these services not only lies in its direct purpose (to transport, feed, and support), but the opportunities for socialization that can lead to decreased isolation and improved well-being.

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▶ Service-Enriched Communities Although reasons for staying in one's familiar home may be compelling, for some older adults, the decision to move may be the necessary or preferred option. People relocate for various reasons, including health challenges, limited finances, social isolation, distance from family or friends, wanting fewer home management responsibilities, experiencing a loss of functional ability, and/or seeking a more moderate climate. Although there are many living options for older adults, not all options are available to persons who need them. This section highlights several possibilities for people who are still independent yet may need some assistance on a day-to-day basis.

Continuing Care Retirement Community Continuing care retirement community (CCRC) campuses are specifically designed to provide a spectrum of lifetime care to residents in the community. Ideally, residents enter the CCRC in the independent living setting and move to more supportive housing within the community if medical and/or personal care services are needed. To join a CCRC, residents typically pay an initial fee and a monthly administrative fee. In return, they are provided access to housing and services that meet their personal needs. Housing within the CCRC may include freestanding houses, townhomes, or apartments. Depending on the community, housing is purchased by the individual or rented. Services available may include medical or nonmedical. Some services may be automatically integrated into specific housing options. Although CCRCs can have a not-for-profit entity in its structure, the cost for entering CCRCs is out of the financial reach for most older adults. Some CCRCs offer some low- income housing opportunities, but those organizations are limited.

Assisted Living Facility

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Assisted living facility (ALF) is a broad term used to describe several types of congregate living arrangements, including adult group homes, board and care homes, personal care homes, and assisted living facilities. In some states, the terms are interchangeable. Regardless of the name, ALFs provide people who could potentially live independently if offered support with ADLs (e.g., hygiene) and IADLs (e.g., medication administration). Whether ALFs offer nursing services or help with medication administration varies by state.

In most cases, residents pay monthly rent and additional fees for the services they receive. Medicare does not pay for housing and services provided in assisted living communities. Medicaid does not typically pay for room and board in these settings either, but depending on the state may cover other costs for eligible individuals. Some long-term care insurance policies may cover residential care as may some Veterans' benefits.

Most ALF apartments are “homelike,” with residents encouraged to bring their own furniture and belongings. Community or shared spaces such as dining rooms, libraries, and activity rooms are provided to promote social interactions. Although the initial move into an ALF may be unsettling and discomforting, residents can trust that as health issues arise they will receive the care needed to remain in their new home for as long as possible.

In 2014, there were approximately 30,200 assisted living residences in the United States, housing more than 1 million people (Harris-Kojetin et al., 2016). Facility sizes vary greatly as do fees charged and services provided. Residences typically provide 24/7 supervision, up to three meals per day in a group dining room, personal care, social activities, housekeeping, help with medications, and arrangements for transportation.

Some ALFs specialize in serving people with specific health conditions such as dementia to ensure both their safety and their engagement in meaningful activities. Individuals considering a move to an ALF should clarify with each site how the staff will be able to meet their care needs, and at what point another move would be needed to find the best fit for anticipated future changes. The average cost for assisted living in the United States in 2017 was $3,750 per month, with the lowest

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cost in Georgia ($2,800) and significantly higher prices in parts of the northeast. The highest rate was in Delaware ($6,015; Genworth Financial, 2017).

Nursing Facilities Many individuals with disabilities that interfere with their self- care skills are eligible to receive care within a nursing facility because of their physical or cognitive impairments. The decision to move into a facility is generally no longer a choice, but rather it is largely predicated on the need for medical care and assistance that is greater than what is available in the home by family or HCBS providers. In the continuum of care, long-term nursing home care is viewed as the most restrictive home environment.

Nursing facilities provide around-the-clock care with the services of registered nurses, licensed practical nurses, and nursing aides. A complement of physicians and therapists is typically associated with a facility, but may not be on site every day. As the need for reducing LTCSS costs has increased, the emphasis on nursing care has been changing. Services in nursing homes are shifting away from long-term care toward rehabilitation therapies. Residents are often admitted for periods of up to 90 days to receive rehabilitation services that improve their functioning to the point that they are able to transfer into a less restrictive environment (including their home) to convalesce.

Oversight of nursing home care is performed by federal and state entities. Regulations may vary state to state, although organizations that receive Medicare and Medicaid reimbursement must comply with federal regulations and standards. CMS periodically audits and surveys facilities that participate in the Medicare program to ensure that they comply with all state and federal requirements. Facilities that fail to comply can be shut down or lose their ability to be reimbursed for services provided. Agencies and facilities opting for additional accreditation, such as those provided by The Joint Commission (TJC) or the Community Health Accreditation Program (CHAP), are subject to additional requirements related to the care provided.

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In spite of the need for long-term care facilities and the oversight provided, there still seems to be widespread fear and hatred of nursing homes due to the negative experiences many families have had in the past (Harmon & Harmon, n.d.). In an effort to quell consumer anxiety and to be more transparent about the quality of care provided, CMS provides survey ratings of CMS-regulated nursing homes through the Nursing Home Compare website (www.medicare.gov/NursingHome Compare/search.aspx). Users can compare nursing homes based on ratings of health inspections, staffing, adherence to residents' rights, and pharmaceutical services.

Rehabilitation The process of helping someone regain the highest possible level of functioning after an injury or illness is called rehabilitation (informally referred to as “rehab”). Rehabilitation specialists, including physiatrists (i.e., physicians specializing in rehabilitation), nurses, and therapy practitioners in the fields of occupational therapy, physical therapy and speech-language pathology, work with clients in the home, community, residential facility settings, nursing homes, and hospitals. Rehabilitation services are provided at different levels of intensity, depending on the client's needs. In an acute rehabilitation setting such as a rehabilitation hospital or nursing home, a resident generally receives three or more hours of skilled therapy each day. Through medical management and therapy, individuals are expected to make significant gains in a reasonable and expected period of time (Medicare Rights Center, 2017). Therapists, rehabilitation nurses, and physiatrists are experts in judging whether this is likely to occur given various factors and the person's current condition. For example, after a stroke or cerebrovascular accident (CVA), an individual can often make good progress in regaining strength, balance, and motor control to do desired tasks. If excellent and quick gains are made, the person may return home directly from the rehabilitation unit. However, if gains are slow or insignificant, an individual may need alternative placement (e.g., assisted living or a nursing facility) prior to or instead of going home. Alternatively, if the individual's level of endurance cannot

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withstand the intensity of acute level rehabilitation, he or she may receive lower intensity therapy services in a skilled nursing facility. Detailed information about SNF rehabilitation services can be found at www.medicare.gov/coverage /skilled-nursing- facility-care.html.

Rehabilitation includes exercise, education, and training/retraining in ADLs, IADLs, mobility, communication, and other functional tasks as needed. By participating in rehabilitation services, many people have been able to return to their former level of independence and their former living situations. This is accomplished by restoration of function and/or using compensatory measures and environmental adaptations to make up for lost skills.

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▶ Person-Centered Approaches to Institutional Care In the United States, there is a cultural shift in the values and principles on which institutional care is assessed and based. The health care system is leaning toward offering person-centered care, but continues to struggle with being prescriptive. However, there are some examples of successful person-centered approaches in the United States and abroad, which can serve as models for change.

In Europe, long-term care facilities seem to have more private rooms with private bathrooms and standard walk-in showers (FIGURE 3-3); and access to outdoors and walking paths (FIGURE 3-4). Some facilities even have cafés that are open and inviting to the public. When you walk into these facilities, the smell of baked goods is pleasing. Local community members looking for light fare at a reasonable cost or as a convenient place to meet friends may frequent the cafés, which also helps residents maintain their connections to the community.

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FIGURE 3-3 An accessible walk-in shower. © Abalcazar/E+/Getty Image

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FIGURE 3-4 Access to outdoor spaces contributes to better health and well-being.

Hogeweyk A creative and imaginative approach to caring for elders, specifically persons with Alzheimer's disease, is offered in Hogeweyk. This village-styled nursing home was established near Amsterdam in 2009. Hogeweyk was developed on the site of a former nursing facility and its campus was transformed into a typical European village. Residents live in one of 23 units with other residents who share similar lifestyles. Each of the units or suites is decorated in a specific style (e.g., country, traditional, cosmopolitan) that conforms to the resident's taste. These units are chosen by the residents based on their lifestyle preferences so that they can continue to live in the way to which they are accustomed. Each unit houses six or seven residents and has a caretaker that assists with home management, outings, and shopping for food at the village store.

The residents in Hogeweyk are provided access to the entire campus in an effort to provide them with a sense of “normalcy.” They can shop for food with their suite mates, stroll the grounds, socialize, and even get a haircut (Weller, 2017). Yet, all their activities and access occurs within a locked compound from which they cannot leave. Their activities are real, yet the backdrop of their daily life is not. All the staff working at Hogeweyk are trained in caring for persons with Alzheimer's disease using a person-centered approach. They provide residents the opportunity to engage in activities because it helps promote a sense of normalcy and usefulness, which promotes improved personal well-being (FIGURE 3-5).

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FIGURE 3-5 Persons with dementia can benefit from receiving help completing daily chores such as shopping.

© Imagegami/iStockphoto/Getty

While proponents of Hogeweyk view the model as truly inventive and creative, critics call it a scary version of the Truman Show, because its operations are based on deceiving residents (Charter, 2012). Readers are encouraged to form their own opinion about Hogeweyk and what they would want should they need care in the future. A 2013 interview by Sanjay Gupta with the director of Hogeweyk is available at www.youtube.com/watch?v=LwiOBlyWpko

Eden Alternative The Eden Alternative was developed by Bill Thomas in the 1990s after he became the medical director of a nursing care facility in upstate New York. Dismayed by the “institutionalized absence of life” (Gawanda, 2014, p. 115), he sought innovative ideas to improve the lives of the residents and to combat the “three plagues of nursing home existence: boredom, loneliness, and helplessness” (Gawanda, 2014, p. 116). Thomas fought (with the health department and the home's administrative staff) to bring in live plants and animals, including dogs, cats, rabbits, hens, and parakeets. Following the influx of pets, amazing events started happening. People who had been nonambulatory started walking so they could “walk the dog,” people named and adopted the parakeets, and perhaps most important, the number of prescriptions required per resident decreased by 50%, while

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mortality also decreased 15%. Thomas contended that people need a reason to live, and in this case, the menagerie of animals offered that purpose, which was the opportunity to take care of another living being (Gawanda, 2014, p. 125).

The Eden Alternative model embraces 10 principles (Eden Alternative, 2016):

1. The three plagues of loneliness, helplessness, and boredom account for the bulk of suffering among our Elders.

2. An Elder-centered community commits to creating a Human Habitat where life revolves around close and continuing contact with people of all ages and abilities, as well as plants and animals. It is these relationships that provide the young and old alike with a pathway to a life worth living.

3. Loving companionship is the antidote to loneliness. Elders deserve easy access to human and animal companionship.

4. An Elder-centered community creates opportunity to give as well as receive care. This is the antidote to helplessness.

5. An Elder-centered community imbues daily life with variety and spontaneity by creating an environment in which unexpected and unpredictable interactions and happenings can take place. This is the antidote to boredom.

6. Meaningless activity corrodes the human spirit. The opportunity to do things that we find meaningful is essential to human health.

7. Medical treatment should be the servant of genuine human caring, never its master.

8. An Elder-centered community honors its Elders by de- emphasizing top-down, bureaucratic authority, seeking instead to place the maximum possible decision-making authority into the hands of the Elders or into the hands of those closest to them.

9. Creating an Elder-centered community is a never-ending process. Human growth must never be separated from human life.

10. Wise leadership is the lifeblood of any struggle against the three plagues. For it, there can be no substitute.

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Development of the Eden principles helped lay the groundwork for inspiring other nursing facilities to transform their own culture into a person-centered culture that promotes health, well-being, and quality of life. Bill Thomas continues to advocate for facility administrators to replace their “top-down” prescriptive focus on care with a “bottom-up” strategy that emerges from resident need, so that the quality of nursing home care will improve. Facilities interested in adopting the Eden Alternative approach can participate in a training available through Eden Alternative.

Throughout the world, the push is on for the proliferation of more inventive person-centered care models to meet the needs of the growing size of the older population. By not segregating older adults from the rest of society and by viewing their needs as a continuum of care, new and innovative alternatives are more likely to emerge. Providing quality long- term care will ensure a better quality of life for persons needing such care (OECD, 2014).

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▶ Special Topics and Issues Telehealth Ongoing technological developments in health care are enabling an array of new services to be provided away from the medical center. Telehealth is a way to visit with and monitor patients outside the medical setting, using ordinary telecommunications and physiological assessment devices such as stethoscopes, pulse oximeters, and blood glucose meters. These devices are altered to transmit information via phone lines.

Telehealth is a cost-saving measure for providers and patients because it eliminates costs associated with travel to remote locations. Technologically advanced service extenders such as telehealth may be harkening the dawn of a new age of home health care, especially in rural areas. When combined with in-home care as needed, telehealth interventions may actually help to prevent hospital readmissions (Dinesen et al., 2012).

As the use of telehealth spreads, the potential for more uses in providing services and supports will emerge. Current efforts are studying telehealth as a method of communication to conduct community support groups, provide continuing education opportunities to providers, and to train caregivers in how to provide basic nursing skills. Clearly, telehealth has the potential to connect individuals and communities that are otherwise isolated from one another.

Paying for LTCSS As highlighted in chapters 6 and 14, nearly half of all reimbursements for LTCSS are paid through Medicare. However, Medicaid, a need-based program managed by state governments, can cover more HCBS service costs than Medicare. Currently, Medicaid pays for 49% of long-term care costs (Congressional Budget Office, 2013).

As life expectancy continues to rise, the need for ongoing long-term care will increase. Some people are purchasing long- term care insurance as a way to pay for services they may need

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in the future while protecting their financial assets. In 2014, an estimated 8.1 million policies were in place (American Association for Long-Term Care Insurance, 2014). Depending on the individual policy purchased, long-term care insurance may cover personal care and homemaking assistance at home, ADS, assisted living, nursing facility care, or other services. Because LTC insurance is relatively new, there is limited long-term data available to suggest that it is a sound investment for the future. However, it is becoming increasingly available as part of insurance package options in the workplace.

Homelessness Homelessness rates of older adults are on the rise. Although the aged homeless population is much smaller in number than younger age groups, its growing size is raising concerns because more older adults will be living on low fixed incomes in the future and lack the ability to obtain affordable housing—a direct pathway toward homelessness (Sermons & Henry, 2010). When income and housing needs are compounded by chronic health problems, including mental health problems and addiction, long-term homelessness can result. As illustrated in FIGURE 3-6, the homeless population of persons age 65 and older is expected to increase 33% by 2020 (from 44,172 in 2010 to 58,772 in 2020) and will continue to rise through 2050 (Sermons & Henry, 2010).

FIGURE 3-6 The rising population of older adults who are homeless.

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National Health Care for the Homeless Council. (September 2013). Aging and Housing

Instability: Homelessness among Older and Elderly Adults. In Focus: A Quarterly Research

Review of the National HCH Council, 2:1. [Author: Sarah Knopf-Amelung, Research

Associate] Nashville, TN: Available at: www.nhchc.org.

For health care practitioners, the way to help combat homelessness is to remain attentive to each client's biopsychosocial needs. Observe their environment and become aware of their daily routines for potential unmet needs. Use the service referral mechanism in place in your agency to help connect clients with services that will reduce their risk for homelessness.

Home Modifications In light of the fact that most people want to remain in their own homes for as long as possible, changes will likely need to be made in the home to keep the older residents safe and comfortable. Many times, older homeowners do not think about modifying their homes until they experience debilitating health problems that reduce their ability to be mobile and function independently in their homes. For these individuals, a physician should refer them to an occupational therapist or a physical therapist for a comprehensive home evaluation. The therapist will evaluate their home and how they function in it to identify areas that could be modified or strategies that they can implement to stay safe and remain as independent as possible.

When modifications to the home are required or just desired, it is up to the homeowner to secure a contractor to make the changes. The National Association of Home Builders (NAHB) offers professional training and Certified Aging in Place Specialist (CAPS) certification to builders and contractors who can provide the expertise needed to modify homes as directed by therapists and homeowners (Age in Place Network, n.d.).

Some modifications will involve extensive remodeling such as building a bathroom on the first floor or creating no-step thresholds to increase accessibility. Entry steps may need to be replaced by a ramp to allow for wheelchair access. Doorways may need to be widened to accommodate a wheelchair or chair

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lifts may need to be added to existing stairways. Kitchens may need to be remodeled to allow easy access under the counters and ease of retrieving items (FIGURE 3-7).

FIGURE 3-7 Accessibility features can make kitchen tasks possible for persons with physical limitations.

© paolo siccardi/age fotostock

Even though universal design features promote accessibility within an environment, the process of adapting a home to fit changing physical needs may be so substantial that moving to a different home or building a new home is more cost-effective. However, existing homes may not be any more amenable to change than the current home. Older homes with typical multi- or split-level layouts do not generally have single- level living areas. Moreover, they are likely to have narrow doorways and inaccessible spaces for persons with limited mobility or using a wheelchair. Newly built homes may have more accessible features than older homes, but still may not offer the modifications needed unless the home is built with the modifications in mind. This, of course, may come at additional

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cost to the homeowner and is out of financial reach for the majority of older adults.

Some home modifications are less drastic and require little modification to the home. These changes may be perceived as more acceptable and affordable to homeowners:

Adding raised toilet seats and grab bars in the bathroom Stabilizing or eliminating scatter and area rugs Improving lighting levels Using shower seats or bath transfer benches Eliminating clutter, tripping hazards (such as cords in pathways), and excess furniture Ensuring that smoke and carbon monoxide detectors are available and working Resetting the water heater to a lower temperature (not exceeding 120°F) Removing door thresholds Moving commonly used items into easily reached spaces

Not all older homeowners need to make all these changes to remain safe, although these accommodations are unlikely to cause harm to anyone who uses them (FIGURE 3-8).

FIGURE 3-8 Marge, who is legally blind, has made simple adaptations to her microwave so she can continue to use it.

Courtesy of Marge's family

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In addition to making home modifications, the individual needing the changes can learn compensatory strategies from a therapist to remain safe in the home. An occupational therapist or a physical therapist can help the individual learn to do the following:

Transfer in and out of the tub or shower safely Use a walker or cane to compensate for decreased balance or strength Use safe techniques when using kitchen appliances Use alternative techniques for completing the daily tasks Use joint protection and energy conservation techniques Compensate for changes in eyesight, memory, and hearing

Reverse Mortgages A home equity conversion mortgage or reverse mortgage is one financial planning option that makes it possible for many older people to afford to stay in their own homes. Through this federally insured program, borrowers use their home as collateral, and the bank sets up either an annuity or a line of credit to be drawn from as needed until the home is sold or the loan repaid. This allows homeowners with inadequate monthly income, but substantial home equity, to remain in their own homes. When the homeowner sells the home or dies, the bank recovers its investment from the proceeds of the sale (National Council on Aging, n.d.).

Overall, reverse mortgage programs sound ideal for aging in place. However, critics of reverse mortgage programs suggest there are program caveats that can cause problems for some homeowners. Program users can face bankruptcy if they cannot pay monthly fees, overdraw on the equity of their home, or outlive the equity available. In some cases, the value of the house decreases and upon sale, the bank demands payment for the balance of the initial appraisal from which the equity was drawn. Regulations on lenders have tightened, thus reducing some of the problems, but they still exist.

According to the National Reverse Mortgage Lenders Association, reverse mortgages were first offered in 1990 when approximately 150 loans were secured. The number of reverse

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mortgage loans peaked in 2009 with 114,692 loans. In fiscal year 2016, fewer than 49,000 loans were offered (National Reverse Mortgage Lenders Association, n.d.). Still, use of reverse mortgages appears to be of interest to older adults.

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▶ Summary Home provides the foundation for maintaining health, well- being, and quality of life for older adults. A home “fulfills many needs: it is a place of shelter and security, inspires a sense of belonging and mastery, and allows the person to be him- or herself, reinforcing (by the presence of significant personal items) their life and identity” (Minkler, 1992). People of all ages deserve the opportunity to live in homes that not only provide safe shelter, but also offer environments to engage in desired occupations. For older adults, finding places that ensure supported and enjoyable living is sometimes challenging but not impossible. Whether home is a house, an ALF, or one of the many other housing options described in this chapter, it should provide the resident with a sense of being in the right place—the pleasing feeling of being home, not just existing. Regardless of type, homes need to be safe, affordable, and accessible to provide the least restrictive environment possible. If a resident feels safe and secure, they are able to focus on their health and social needs. Enjoyable surroundings provide opportunities to participate in personally meaningful activities, which can help promote a healthy, productive, and fulfilling aging experience.

CASE STUDIES

Case 1: Carmella, a 72-year-old widow with no children, lives alone. She is on a fixed income, but she owns her home, which is located in a rapidly growing neighborhood. Carmella has been relatively healthy for most of her life, but now her vision is failing, she was diagnosed with osteoporosis last year, and she does not have the strength and stamina that she once did. With her husband gone and most of her friends having moved away, she has few opportunities for socialization. Her biggest fear is that someday she might fall and break her hip and no one will find her. Carmella does not really want to leave her home, but she knows that it is time for something to change.

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1. If Carmella decided to move out of her home, which housing option would you recommend for her and why?

2. Do you think Carmella is a good candidate for a reverse mortgage? Why or why not?

3. If Carmella decides to stay in her home, what services might be most beneficial to her and why?

Case 2: After he retired, Martin rented a room in a house with three roommates, one of whom owned the house. He and another roommate shared expenses in lieu of paying rent, while the third roommate lived there for free in exchange for performing home maintenance, running errands, and helping out with any other necessary tasks. Seven years ago, the homeowner died and Martin decided to move into an ALF. He has made many friends over the last few years and rarely had any significant health problems in that time. A few months ago, he suffered a stroke that did not affect his mental capacity, but caused mild paralysis and some difficulty speaking. Martin can still perform most ADLs and IADLs with minimal assistance, although it takes a bit longer than it used to. During a recent visit from his son and daughter-in-law, he overheard them in the hall discussing the possibility of moving him into a nursing home. Martin does not feel that he belongs in a nursing home and is frightened that his son might be able to force him to move into one.

1. What type of housing did Martin live in before moving to the assisted living facility, and how do you know?

2. Based on Martin's current situation, do you think he needs to be moved to a nursing facility? Why or why not?

3. Martin is afraid that his son will force him to move into a nursing home. Is his son able to make this determination on his own? Why or why not?

Test Your Knowledge

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Review Questions

1. The benefits of remaining connected to one's home can potentially shorten the length of time in institutional care and increase the time spent living at home and in the community.

a. True b. False

2. A key therapeutic goal is to provide services and supports in the ____________________ as possible.

a. Best medical environment b. Most family-like environment c. Least restrictive environment d. Least hospital-like environment

3. ____________________ includes not only personal services, but also assistive technology, which can help users complete activities of daily living and instrumental activities in daily living.

a. Least restrictive environment b. Continuum of care c. Person-centered care d. Gerotechnology

4. The continuum of care service delivery model provides a way to connect ____________________ with ____________________ in a way that supports the least restrictive environments possible.

a. Transportation, recreation b. Housing, healthcare c. Healthcare, transportation d. Recreation, housing

5. Long-term care services and supports (LTCSS) include an array of services and supports for people who need assistance to function in everyday life. Home and community-based services (HCBS) are

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one component of the LTCC system that supports personal independence and choice while increasing admissions into long-term care facilities.

a. True b. False

Learning Activities

1. The seven principles of universal design are: a. Equitable use b. Flexibility in use c. Simple and intuitive use d. Perceptible information e. Tolerance for error f. Low physical effort g. Size and space for approach and use

Discuss how these seven principles specifically support the needs of older adults. Provide specific examples.

2. Identify five things in your current home environment that you think you will need to change and will not need to change if you were an older person with mobility problems. Compare your answers with the group. What can you learn from the answers of others?

3. Research three different cohousing communities. In what ways are they similar and in what ways are they different. Identify steps each type of community could take to increase the diversity of its members and continue to be financially sustainable.

4. Research continuing care retirement communities (CCRCs). Identify the advantages and disadvantages of living in a CCRC. What steps could a CCRC take to become more environmentally accessible to its residents?

5. Telehealth is an emerging technology. Identify a health issue that interests you. How can telehealth

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contribute to addressing the problem? Compare your answers with the group.

6. People can benefit a great deal from receiving person-centered care across the continuum of care. Initiate a group discussion on the positive and negative implications for embedding it in the health care and housing systems across the continuum of care. (HINT: financial, regulatory, public health).

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© patpitchaya/Shutterstock.

CHAPTER 4 Loss, Grief, Death, and Dying Regula H. Robnett, PhD, OTR/L, FAOTA Nancy Brossoie, PhD

CHAPTER OUTLINE

INTRODUCTION

LOSS AND GRIEF Loss Grief

THEORIES ON MANAGING GRIEF Attachment Theory Stage Process Model Phase Process Models

COPING WITH LOSS AND GRIEF Complicated Grief

SUPPORTING A PERSON WHO HAS SUSTAINED A LOSS Rituals Burnout

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Compassion Fatigue

DEATH AND DYING Death Perspectives on Death

SEEKING A GOOD DEATH Advanced Directives

END-OF-LIFE CARE OPTIONS Hospice Working with Dying Patients

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Define and explore the meaning of loss and ways to cope with loss.

2. Describe and discuss theories about the grieving process. 3. Explore definitions of death and the meaning of a good

death. 4. Examine components of advanced directives. 5. Compare and contrast end-of-life care options.

KEY TERMS

Active euthanasia Advanced directive Attachment theory Beehive theory Brain death Burnout Cardiopulmonary resuscitation (CPR)

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Circumstantial loss Clinical death Compassion fatigue Complicated grief Compression of morbidity Death Death with Dignity Act (DWDA) Developmental loss Do not resuscitate (DNR) Dual process model of grief Euthanasia Good death Grief Healthcare power of attorney (HCPOA) Hospice care Individual or personal autonomy Living will Loss Natural death Organ and tissue donation Palliative care Passive euthanasia Persistive vegetative state (PVS) Phase process model Physician-assisted suicide Premature death Rituals Stage process model Suicide Talk therapy Task-based model Terminally ill

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▶ Introduction Losing a relationship with a loved one or cherished friend through death, illness, or accident can be emotionally painful at any age, even though most personal losses are experienced in late life. Still, a single loss can cause significant upheaval in the lives of the persons affected. In any 30-month period (2.5 years), approximately 70% of people aged 65+ experience a significant loss (e.g., death of a spouse or close friend; Williams, Sawyer Baker, Allman, & Roseman, 2007). In spite of its prevalence, few among us are experts at managing our own losses much less supporting other people who are grieving. We typically fumble through our exchanges with little understanding of the grieving process and how to respond. Moreover, few healthcare professionals (aside from individuals directly working with patients who are terminally ill) have a solid understanding of the death and dying process, which also influences the grieving process.

In this chapter, key concepts on loss, grief, death, and dying are presented to help healthcare professionals understand the losses a client may be experiencing as well as how to manage their own grief. The ability to effectively cope with loss connected to client care is paramount for a long productive career in health care. Feelings of distress should not be suppressed or tucked away prematurely. Expressing emotions through crying, laughter, sharing feelings, and even lamenting are natural and normal and necessary (Jackins, 1978). In our role as healthcare professionals (as well as family members and friends), it behooves us to increase our understanding and comfort level with managing grief, death, and the dying process.

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▶ Loss and Grief Loss Losses are an inevitable part of life. The feelings associated with a loss can emerge after an incident (e.g., injury, accident, or death) or event (e.g., natural disaster or divorce). Loss can also originate from less visible causes, including changes in social role (e.g., widower, divorcee, or retiree), responsibility (e.g., increased or decreased caregiving tasks), or personal expectation (e.g., shift in retirement plan). Clearly, losses can be anticipated or unanticipated and are often out of one's control. Regardless of source or timing, experiencing a loss is a universal feeling of grief that develops after being deprived of someone or something of value.

Despite the negative connotation in its definition, philosophers such as Friedrich Nietzsche have conceptualized loss as helping a person gain better perspective and understanding of life and eventually rediscovering joy. Nietzsche (1889) wrote: “What does not kill me, makes me stronger” (p. 8) and Kahlil Gibran (1923) penned: “The deeper that sorrow carves into your being the more joy you can contain” (p. 28). Many people who have contemplated their own losses believe that, while they did not choose to experience loss, good came of the situation through their own personal growth.

Researchers have also studied loss and its meaning, and have found it difficult to develop a generalizable theory about loss because it is so individualized. A loss for one person may not be experienced as a loss to another person. One type of loss (e.g., death) may hold more gravity than another loss (e.g., a minor accident). However, Wilson (2013) categorized loss into two categories: circumstantial and developmental. Circumstantial losses are typically unexpected incidents or events that negatively affect daily life (e.g., divorce, illness, and house fire). Developmental losses are anticipated events or milestones that occur as a function of personal growth and maturation. Developmental loss begins at birth in giving up the

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warmth and comfort of the womb. It continues into adulthood as developmental milestones are met (e.g., leaving the family home, retirement) as well as undergoing changes in physical health associated with old age (e.g., poor eyesight, loss of muscle mass, impaired memory recall).

Viktor Frankl (1905–1997), an Austrian neurologist and psychiatrist, has been considered an eminent scholar on the subject of loss. During the holocaust, he was a prisoner in the concentration camps. In an effort to preserve his own intellect and sanity, he decided to observe fellow prisoners and take note of how they defined loss and extracted meaning in their lives. In his book, Man’s Search for Meaning (1946, 2006), he recalled his contemplative study and concluded that while humans often cannot control life events, they can control their response to these events. Frankl subsequently developed logotherapy, a therapeutic approach that is based on the belief that the ability to attach meaning to life is key to motivation and life preservation.

Through specific theories on loss and personal anecdotes, how individuals cope with loss (i.e., emotionally deal with an experience involving loss) has generated a great deal of interest as it is integral to many therapeutic interventions. A great deal of research and study has been focused on coping with loss directly associated with the death of a loved one. Death holds different meanings for individuals, families, and cultures. Everyone affected may appropriately utilize different coping strategies to manage their grief.

Coping with the loss of a loved one can be incredibly difficult and take time to overcome. Even though logic and social norms may dictate how to respond to death, people still can be overcome with feelings of confusion, sadness, anxiety, and depression when affected by death. Over time, feelings of sadness generally disappear. However, grief (i.e., mental suffering or anguish) can be particularly difficult to overcome and may require professional intervention to improve personal coping skills and functioning.

Grief Grief can be defined as “keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret” (Random

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House, 2017). Moreover, grief is personal, intimate, and intense and affects an individual emotionally, socially, mentally, and spiritually. It is not uncommon for people to interchange the terms grief/grieve and mourn/mourning. Yet, the terms have different meanings. Grieving refers to the state of internal suffering, whereas mourning is an outward expression of that distress (FIGURE 4-1). For example, social conventions often dictate that a woman wear black clothing after the death of her spouse or that a family hold a wake that includes excessive drinking and stories and tributes to the deceased. Like most mourning rituals, both of the previous activities were developed to help people manage their grief. The effects of grief can take a physical and emotional toll on an individual. However, people who receive emotional and social support from their family, friends, and community are better positioned to resolve their acute feelings of loss.

FIGURE 4-1 Mourning, unlike grief, is an outward expression of distress.

© Syda Productions/Shutterstock

Everyone expresses their grief differently, as it is a highly individualized experience. Typical reactions include a range of feelings such as sadness, guilt, confusion, loneliness, disbelief, denial, anger, happiness, fear, acceptance, shock, hatred,

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anxiety, emptiness, relief, and helplessness. The grieving process takes time as individuals learn to live with and manage their loss (Attig, 1996; Worden, 2009).

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▶ Theories on Managing Grief Theories behind how grief is managed have systematically emerged over the last 100 years. Sigmund Freud (1856–1939), founder of modern psychoanalysis, introduced the idea of grief management as early as 1917 (Freud, 1917). Freud, a firm believer in the benefits of talk therapy between patient and therapist, proposed that individuals should confront their grief by identifying and talking about issues that make it difficult for them to accept their losses. Patients were encouraged not to dwell on the deaths of their loved ones but to “move on” with their lives, so that their “broken” hearts and spirits could heal and their health would not be compromised. By engaging in grief therapy, Freud proposed that a patient could learn to cut ties to the deceased, readjust to life without the deceased, and form new relationships.

Freud’s approach was simple, direct, and perhaps even elegant. However, it may not suffice. In fact, Freud reportedly did not “move on” from his own daughter’s death and continued to mourn her for more than 30 years (Hall, 2011). Still, his influence on grief work cannot be underestimated, even though his approach was prescriptive and managed grief in a linear manner. As practitioners gained experience working with Freud’s model, they reported that the underlying elements in it were sound but insufficient in resolving grief, which was found to be more complex and dynamic (Hall, 2011).

Attachment Theory John Bowlby (1977), father of attachment theory, found that Freud’s work aligned well with his theory on attachment. According to attachment theory, personal attachments to nurturing figures (e.g., mother or father) are initially focused on meeting basic needs such as safety and security, with the level and nature of the attachment changing over time. Bowlby maintained that we mourn persons with whom we have the closest attachments. However, even close relationships are

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complex and can have a degree of ambivalence, both of which impact the grieving process. Freud first brought up the ambivalent relationship as a component of relating to the deceased. Utilizing Bowlby’s theory, Bradley and Cafferty (2001) found that older widowed adults whose relationships with their now deceased spouses had included high levels of quarreling and tension, tended to display more depression, guilt, self-reproach, and “disordered mourning” after the spouse’s death. Conversely, spouses who had maintained healthy relationships were more likely to display signs of “uncomplicated grief”, which included signs of sadness and pleasant memories, but rarely feelings of guilt.

Stage Process Model Elisabeth Kübler Ross (1926–2004) was a Swiss American psychiatrist and thanatologist (an expert in the study of dying), who is best known for her stage process model for managing grief. In her book On Death & Dying (1969) she outlined five stages of grief, which corresponded with the stages she saw people go through after receiving medical confirmation that they were dying. She concluded that the emotional and psychological stages dying people experience help them come to terms with their own impending death.

Kübler Ross (2005) proposed five progressive stages of grief:

1. Denial: Refusing to accept the situation by relying on a defense mechanism of thoughts such as “this can’t be true,” even when one knows intellectually that the loss is real.

2. Anger: Directing frustration and anger toward oneself, other people, God, and/or the deceased. The grieving person may believe the situation is not fair and question “why me?”

3. Bargaining: Trying to negotiate with their God or higher power. They may promise to behave better (e.g., live a healthier lifestyle) if allowed to live.

4. Depression: Experiencing feelings of sadness, regret, loss, and/or anticipatory grief. Symptoms may result in a diagnosis of clinical depression.

5. Acceptance: Intentionally detaching from the problem and

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feeling like “it’s going to be okay.” Although not happy about the situation, people in the acceptance stage move on with life. Growth may occur (Kübler Ross, 2005).

General acceptance of the stage model was swift because it aligned well with stages practitioners were seeing in their patients and it appealed to their desire to provide them with closure. However, guiding patients through stages of grief remained difficult because grief was not experienced as a linear process and the timing of stages was not the same for everyone. Multiple studies have since focused on the model’s effectiveness in managing grief, and findings are inconclusive. Grief is not linear, and therapeutic interventions need to account for its complexities as well as differences by gender, culture, and type of loss.

Still, Kübler Ross’s model remains a useful guide for basic grief work (FIGURE 4-2). Since its development, theorists have used it to launch phase models of grief work, which posit that everyone’s journey with grief is different and their unique responses will guide their transitions between stages or phases, as they work to resolve their grief.

FIGURE 4-2 Kübler Ross’s stage process model of grief. © Raywoo/Shutterstock

Phase Process Model There are several phase process models of grief that support grief work and enhance patient self-efficacy. Two influential

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models are the Dual Process Model of Grief (Stroebe & Schut, 1999) and the Task-Based model (Worden, 2009). In the Dual Process Model, resolving grief is dynamic and oscillates between two orientations. That is, the grief work process shifts between coping with loss (e.g., via therapy, avoidance, denial) and reorienting to daily life (e.g., adjusting to new routines and changes in lifestyle). When adopting this model approach, avoidance and denial, two responses often viewed as negative, are embraced as potentially helpful, especially when an individual needs to focus on another issue precipitated by the loss, such as adjusting to changes in daily routine.

Similarly, Worden’s Task-Based Model (2009) accommodates an individual’s need to work through tasks or phases to work through grief. He identifies the four tasks to be completed:

Accept the reality of the loss. Work through the pain of grief. Adjust to an environment in which the deceased is missing. Find an enduring connection to the deceased while embarking on a new life.

The tasks do not need to be completed in any particular order and may be revisited for further exploration as time goes by. The practitioner’s role is to be responsive to the individual’s needs and help guide him or her through the tasks as the need presents.

Similar to other phase theorists, Edwin Shneidman (1918– 2009), a clinical psychologist devoted to suicide prevention, purported that the grieving process has many interlaced emotional “themes” that can appear, disappear, and reappear again. One of the analogies he used to describe the grief process is the “beehive theory,” which depicts the bereaved individual as going back and forth between acceptance and denial and bewilderment and pain. Thus, Shneidman also concluded that due to the amorphous nature of grief, it should not be viewed as a linear process (Shneidman, 1993). He also confirmed the inevitable: “Dying is the one thing—perhaps the only thing—in

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life that you don’t have to do,” he once wrote. “Stick around long enough and it will be done for you” (Dicke, 2009).

In this section, a few key theories were highlighted to demonstrate the types of theories guiding grief management. Researchers continue to test the theories, but have yet to come up with a single model that is effective with every person. Grief is a unique experience and how you process it may be different from your family members and friends. Grief can produce, heighten, or alter feelings, physical sensations, cognition, and behaviors. Lindemann (1944; as cited in Worden) provided descriptions of those personal responses to grief, presented in TABLE 4-1 (Worden, 2009).

TABLE 4-1 Personal Aspects Related to the Grieving Process

Modified from Worden, 2009, pp. 18–30.

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▶ Coping with Loss and Grief Complicated Grief With the support of a social network and an arsenal of coping strategies, it is possible to effectively process grief informally, that is, without the support of professionals. Most people do come through the acute bereavement period and reach what is known as “integrated grief,” when they can successfully reengage in life and find contentment (Shear, Ghesquiere, & Glickman, 2013). However, when the grief process becomes too intense or complicated, or persists longer than a year, professional help may be needed in order to cope.

The therapeutic diagnosis of “persistent complex bereavement disorder” (American Psychiatric Association [APA], 2013), commonly known as complicated grief, applies to individuals who are unable to manage their grief and experience symptoms such as intense sorrow, yearning, and emotional pain during the majority of days for more than 12 months. Among individuals who develop complicated grief, adults age 61 and older experience it at twice the rate of younger adults (up to 70%), with women most affected (Kersting, Brahler, Glaesmer, & Wagner, 2011; Shear et al., 2013). Up to 20% of older bereaved individuals may experience complicated grief (Sung et al., 2011). Burton and colleagues (2012) found older adults experiencing complicated grief were unable to think optimistically, meet the needs of other persons, develop and reach personal goals, stay calm, or laugh (FIGURE 4-3). Moreover, additional studies also suggested complicated grief contributed to a lack of sense of control and self-worth (Shear et al., 2013). Persons afflicted also tend to deal with their grief using ineffective or dysfunctional methods such as preoccupation with death or inability to carry out daily occupations (APA, 2013). Latham and Prigerson (2004) reported a nearly sevenfold risk of “high suicidality” scores after approximately 6 months in a study of over 300 grieving older adults, with that risk factor rising even higher at the 11-month

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mark following the death. These researchers also cited increased risks in bereaved people for major depressive episodes, increased anxiety, decreased physical health, and increased substance misuse, even after accounting for potentially confounding variables such as posttraumatic stress syndrome (PTSD) and an initial major depression diagnosis.

FIGURE 4-3 People who experience complicated grief may not be able to successfully complete their day-to-day activities.

©Lopolo/Shutterstock

Risk factors or red flags indicating a person may be at risk for experiencing complicated grief include witnessing a violent death (especially of a loved one), losing someone with whom they maintained a high level of dependence, experiencing high levels of anxiety, and exhibiting an insecure attachment style (Wilson, 2013, p. 37). Moreover, individuals who have low levels of social support, limited religious or spiritual support, low socioeconomic status, and physical disability or illness are at more risk for experiencing complicated grief than their counterparts (Alexander & Klein, 2012, pp. 94–95).

Dr. Therese Rando, a clinical psychologist and Clinical Director of The Institute for the Study and Treatment of Loss in Warwick, Rhode Island, has developed a theory on complicated mourning (i.e., the outward or culturally-based display of grief). She hypothesized that complicated mourning is more contextually based, individualized, and voluntary than “normal” grief. The three phases of active mourning include avoidance,

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confrontation, and accommodation. Within the three phases, six steps or “Rs” of mourning occur:

1. Recognition of the loss occurs during the initial avoidance phase. The person begins to acknowledge the loss and seeks to understand the death.

2. Reaction to the loss or separation, including feelings of pain and sadness. One expresses these feelings during the second confrontation phase.

3. Recollection and re-experiencing the past relationship with the deceased. Also during the confrontation phase, one reminisces about former experiences, including the feelings that occurred at the time.

4. Relinquishing also occurs in the confrontation phase. During this time, one begins to let go of the attachment to the deceased.

5. Readjustment occurs during the final accommodation phase. While one does not forget the past, new relationships, new ways of adapting, and a new identity may be established.

6. Reinvesting also happens in the final phase of mourning (accommodation). During this time, the mourner begins to put more energy into new ventures, including new life goals and new friendships (Rando, 1993).

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▶ Supporting a Person Who Has Sustained a Loss For many people, talking about their personal loss is difficult, especially when it involves the death of someone special to them. May Sarton, a well-known writer, chronicled her experiences before her own death, which her dear friend Susan Sherman later shared. Sarton and Sherman noted which response strategies seemed to help them during Sarton’s dying process and which ones did not (Signs of Love: Health and Aging, 1997; see TABLE 4-2).

TABLE 4-2 Helpful and Not Helpful Responses to a Person Who Has Experienced Loss

Helpful Not helpful

Offer specific support (What can I pick up at the store for you today?; I’m going to do your dishes)

Using euphemisms such as “He was old; it was for the best” or “She’s in a better place”

Listen Avoiding the topic of death or the person grieving

Ask what the person wants to talk about or share

Omitting the person from social events with friends

Use plain language Touching, fondling, or petting that is not welcomed

Support the efforts of other people (friends, religions, and professionals)

Saying “it’s OK, or you’ll be OK” or sugarcoating the situation or infantilizing the grieving person

Heartfelt sharing and empathetic friendship

Making assumptions about what the person wants or needs

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Be willing to say goodbye when it is time

Avoiding topics that cause discomfort

Use humor Changing the subject when the grieving person wants to talk

Data from Signs of love: On health and aging (1997).

To move past any awkwardness in talking with a grieving individual, Marasco and Shuff (2010) suggested taking a deep breath and remembering that no matter what happens, the grieving person is in the more difficult and painful situation. They also advised keeping in mind that each person and each circumstance is different and that preplanned strategies may not always be effective. But, if you focus on being a good listener, the grieving person likely will guide your exchange. Many times it is more beneficial to simply be present rather than engaged in conversation.

Rituals Rituals play an important role in society and are often utilized for coping with loss and grief, and to assist moving through the mourning process. Rituals can be personal, faith based, or social, and can be undertaken as an individual or as a group. Participating in a ritual can strengthen feelings of social connectedness and belonging, offer psychological support, and provide meaning to the loss. A ritual can include a traditional activity such as serving a birthday cake with candles at a birthday party honoring the deceased or it can be symbolic such as laying a token at a gravesite. Individualized or culturally- based rituals can directly support the healing process, help reduce anxiety, and promote regaining sense of control. Individuals involved in the process may find comfort by being among like-minded others (Norton & Gino, 2014). There can be a downside to rituals, however, when they become overly rigid (or overly ritualistic as found in persons with obsessive compulsive disorder; Norton & Gino, 2014). In the case of such unhealthy ritualistic behaviors, professional assistance may be warranted.

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Some people engage in annual remembrance events to help retain connections with other individuals who have also experienced loss. For example, lighting a candle in a church or participating in a walkathon to support persons who have died or are battling cancer are common ways to honor a deceased person or group of persons. Engaging in a ritual or charity event can help an individual reflect on the past, focus on the present, and provide hope for the future.

Montross-Thomas and colleagues (2016) have found that rituals also play an important role in the self-care of healthcare professionals, especially among individuals who work with dying patients/clients. In a field that often demands long hours, limited professional support and organizational oversight, increased responsibilities on providers, and ever-changing caseloads, healthcare professionals are at high risk for experiencing burnout and compassion fatigue. These providers are often confronted with intense emotional situations, and it is uncommon for other people to consider the care needed by these caregivers who devote their lives to caring for others.

Burnout Job burnout can occur in any profession. It is caused by excessive and prolonged stress caused by the work environment. Common signs include emotional exhaustion, feeling detached from patients and their care, and a lack of personal accomplishment. Providers who are experiencing burnout are at high risk for making mistakes in their work and often become cynical about their work (Gallagher, 2013; Koh et al., 2015).

Compassion Fatigue Compassion fatigue can occur within helping professions and is sometimes referred to as secondary or vicarious trauma, a cousin of PTSD (Gallagher, 2013; Orpustan-Love, 2014). It is often associated with burnout, but has a different underlying cause. Compassion fatigue affects individuals (e.g., caregivers, healthcare professionals) affected by trauma experienced by someone else (e.g., patient/client). Signs of compassion fatigue include lack of self-care, low levels of compassion, and loss of

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boundaries with a patient/client (Koh et al., 2015; Orpustan- Love, 2014).

To combat burnout and compassion fatigue, studies have shown that self-care strategies such as maintaining physical health, engaging in an increased variety of clinical roles, pursuing hobbies, relying on meditation techniques, maintaining realistic expectations about work, limiting work to 40 hours a week, and engaging in rituals can reduce risk (Koh et al., 2015; Montross-Thomas, Scheiber, Meier, & Irwin, 2016; Orpustan-Love, 2014). Examples of rituals relied upon by end- of-life providers include attending the funeral of the deceased, offering condolences to the family/bereaved, writing in a journal, writing poetry, lighting a candle, saying a prayer, taking a walk, visiting the hospital chapel, or sitting quietly in the car after a death. The use of these important self-care and rituals can enhance one’s ability to demonstrate compassion and find meaning and satisfaction with work (Koh et al., 2015; Montross-Thomas et al., 2016; Orpustan-Love, 2014).

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▶ Death and Dying Death On the surface, death is a simple concept to understand—a dead person is simply no longer alive. Yet, determining when death actually occurs can be complicated. In the 1800s, there were great fears that individuals who were comatose would be presumed dead and erroneously buried. So, Victorian caskets included a shovel, a bell, or a periscope just in case the “dead” person woke up; at least that is what legends suggest. A scary thought, indeed. Since the mid-1900s, as life-sustaining technology (e.g., heart defibrillators, respirators, and organ transplants) and the use of cardiopulmonary resuscitation (CPR) have become mainstream in medical care, healthcare practitioners have significantly improved at recognizing death. However, defining the point of death remains contentious. In this chapter, we present the criteria followed in the United States while recognizing other countries may follow different rules.

Clinical death occurs when the heart stops circulating blood throughout the body and the lungs are unable to oxygenate the blood—two functions necessary to sustain human life. When those two functions cease, clinical or physical death has occurred. It is possible, however, to resuscitate (i.e., revive or bring back to life) an individual who is clinically dead by using CPR or a form of mechanical technology to restart the functioning of the heart and lungs. However, timing is extremely important when bringing a person back from clinical death, because a brain deprived of oxygen for too long will cease to function properly or not at all.

Brain death generally follows a devastating brain injury and occurs when three key processes occur: coma, apnea, and lack of brainstem reflexes. More specifically, brain death may be diagnosed when there is:

No spontaneous movement in response to stimuli. No spontaneous respirations for at least 1 hour.

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Lack of responsiveness to painful stimuli. No eye movement, blinking, or pupil response. No postural activity, swallowing, yawning, or vocalizing. No motor reflexes. A flat electroencephalogram (EEG) for at least 10 minutes. No change in criteria in 24 hours.

When all these conditions occur, life support is considered futile except to preserve organs for donation to a living being (Goila & Pawar, 2009).

However, sometimes the brain does not completely cease to function when damaged. Brain activity in the cortex (where complex thinking processes occur) may cease but primal functions regulated in the brain stem (e.g., blinking, swallowing, and breathing) can remain strong. When this condition occurs, the individual is said to be in a persistive vegetative state (PVS) and there is no possible return to normal functioning. Modern technology is credited with the rise in prevalence of PVS, as healthcare providers strive to keep their patients alive through the use of technology that can regulate the heart and lungs. However, at what cost? Critics suggest there is no quality of life for persons in a PVS, their healthcare costs tend to be high, and their ability to interact with family and friends is nonexistent, which increases the family’s anxiety and stress.

The idea of prolonging life through medical intervention just because it is available does not appeal to most people. Understandably, most people prefer to live a long fulfilling life and die a natural death (i.e., dying at an old age at a time when the body stops functioning on its own) rather than live a long life dependent on machines or others for care. Some people might opt to use machines to keep themselves alive to avoid premature death (i.e., dying at a young age) due to accidents and unknown medical problems. In a perfect world, everyone would live to a very old age (100+, perhaps) and then naturally (and painlessly) pass away. But because that is unlikely to happen, the best one could hope and work towards is the compression of morbidity before death (i.e., the personal and systemic burden caused by illness is reduced to the shortest time possible; Fries, 2005).

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Perspectives on Death Regardless of personal feelings about death, it is important not to assume that anyone is, or is not, prepared to die. Even at very advanced ages, people may still possess enthusiasm for life, whereas even younger people may have accepted that death is near. A personal example illustrates: An older friend, aged 89, was just as vital and engaging as ever. She began to share that she was “ready to go” and enjoyed discussing what she thought she would find “on the other side.” On a recent Friday night, she enjoyed a pedicure and dinner with her group of friends as she had done many times. The following Sunday, she sustained a massive stroke and died within a few days. Her best friend, on the other hand, is nearly 95 years old. She is also actively engaged in life and living independently in an apartment. She had her hip replaced at age 93 and says she hopes to attend her youngest granddaughter’s wedding 6 months in the future. She is not “ready to go” but does realize that she could “exit” (her words) anytime. These two older women illustrate two distinct approaches to coming to terms with death and serve as a reminder for healthcare professionals to leave personal judgments and assumptions at the door, and to listen if a person wants to talk about death.

Conversations about death and dying, regardless of the underlying cause, are shaped by our own experiences and perspectives. In U.S. society, death tends to be talked about in hushed tones, relegated to a family matter (if addressed at all), and not publically examined. As a result, fear and anxiety about death can ensue. Fear of death typically peaks in young adulthood when the realities of the permanence of death and first-hand experiences with death often emerge. Not knowing or understanding what happens to the mind and body before, during, and after the dying process can create anxiety. Moreover, questions about whether or not people possess a soul or spirit and the possibility of an afterlife can generate more questions and angst.

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▶ Seeking a Good Death Perhaps because there are so many unknowns about the dying process and perhaps because society values personal choice, people are interested in controlling the circumstances surrounding their own death so that they can experience a good death. A good death means something different for everyone, but most of us would agree that we hope our deaths are pain-free and without distress and suffering for ourselves, our families, and our caregivers. We also want our end to be aligned with our own and our families’ wishes and reasonably consistent with clinical, cultural, and ethical standards (Institute of Medicine, 2014).

Having choices and the ability to make an informed decision regardless of what other people may think is the best treatment or the morally correct treatment that is valued in U.S. society. People like to be in control of every aspect of their lives, including death. Having the ability to make a choice is a part of having individual or personal autonomy. On the surface, the freedom to choose one’s course of treatment and course of death seems like an obvious right that every adult should expect to have throughout adulthood. But the right to die is a more complex matter that crosses legal, political, and social boundaries.

Suicide is simply the act of taking one’s own life by using “self-directed injurious behavior with an intent to die as a result of that behavior” (National Institute of Mental Health, n.d.). Suicide is an illegal act in most states and viewed as morally reprehensible in most cultures. One might wonder, “So what difference does it make that it is illegal? The person is killing themselves!” In states where it is illegal, persons who attempt suicide face legal prosecution—in part, as a deterrent to future attempts. Many states view suicide as being on the continuum of assault and murder; which are also illegal.

In 2014, an estimated 1.1 million adults reported engaging in nonfatal suicide attempts (Lipari, Piscopo, Kroutil, &

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Miller, 2015), while 41,149 persons actually completed suicide (National Center for Injury Prevention and Control, 2015). Men continue to account for 77% of all suicides (National Center for Injury Prevention and Control, 2015), although suicide rates among women have been rising steadily since 1999 (Curtin, Warner, & Hedegaard, 2016). White males and females are also much more likely to commit suicide than other racial groups (Curtin et al., 2016). The suicide rates of young (25–44; 24.3 per 100,000) and middle aged (45–64; 29.7 per 100,000) men are high, but do not compare to the high rates of men aged 75+ (38.8 per 100,000; Curtin et al., 2016).

The reasons for the high rates of suicide among men aged 75+ can be linked to bereavement (Martikainen & Valkonen, 1996) and the growing stress in managing changing life roles and responsibilities such as caregiving for a spouse (something most men were never trained to do) and adjusting to a new social identity upon retirement and as friends and loved ones pass away. Like half of all men of all ages committing suicide, the majority of older men who completed suicide used a firearm (Curtin et al., 2016).

The rising rates of suicide in late life are especially concerning as the number of men reaching old age increases. Today’s older men are unlikely to use therapeutic counseling services/mental health services or suicide hotlines to talk about the issues bothering them. Moreover, there are limited numbers of programs developed specifically for older adults to address suicide. Thus, future efforts need to focus on responding to this concerning problem (Young et al., 2012).

Unlike suicide, euthanasia is an act of killing another being and takes two forms—passive and active. Passive euthanasia involves “standing by” and not taking action to prevent an inevitable death by allowing “nature to take its course.” Pneumonia was a condition historically referred to as an old man’s friend. By letting pneumonia go untreated, the illness could shorten a life that otherwise would be filled with disease and debilitation. Passive euthanasia is illegal, unless strict medical and legal documentation is in place to support the lack of actions taken.

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Conversely, active euthanasia involves taking direct action to shorten life. A veterinarian engages in active euthanasia when it “puts down” an animal by injecting it with drugs to stop its heart. Like suicide, active euthanasia with humans is illegal, with one exception. The U.S. legal system views the practice of lethal injection—in which a person is injected with a fatal solution of drugs that cause death—as an acceptable course of action in cases of capital punishment. In no other situation is active euthanasia or lethal injection considered legal.

Unlike euthanasia, physician-assisted suicide involves taking one’s own life under the guidance of a physician. Physician-assisted suicide is currently legal in some countries in Western Europe (i.e., Netherlands, Belgium, Luxembourg, and Switzerland) and only in a few U.S. states (California, Colorado, Oregon, Vermont, Washington) plus the District of Columbia. U.S. residents have been known to travel to countries in Western Europe to end their lives when they are unable to do so in their own states. One poignant example is showcased in a 2010 episode of the PBS series Frontline titled The Suicide Tourist, which follows Craig Ewert as he travels to Switzerland to end his own life after being diagnosed with amyotrophic lateral sclerosis (ALS). For more information, visit: www.pbs.org/wgbh/pages/frontline/suicidetourist.

For a long time, there has been an undercurrent of public interest in having the right to die where and when a person chooses. In 1980, the Hemlock Society began right to die advocacy by raising awareness and advocating for individual “choice, dignity, and control at the end of life” (Hemlock Society of San Diego, n.d.). Today, other organizations such as Compassion and Choices and the World Federation of Right to Die Societies continue the mission in advocating for the right to die without legal prosecution of the physician assisting the suicide.

In 1994, the people in the State of Oregon voted to enact the first Death with Dignity Act (DWDA) to allow physician- assisted suicide. After much public debate about the acts’ merits, they re-voted and passed it into law in 1997. The Act provides terminally ill patients (i.e., diagnosed with a health

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condition from which there is no reasonable hope of recovery) a means in which to obtain a physician’s order for medications to end their life. The process in Oregon and other U.S. states differ, but include strict guidelines with state (government) oversight in an effort to ensure participants are making informed decisions on how and when they want to die. After a person enters the program, they always have the option not to end their own life. Historically, more individuals utilize the Death with Dignity Act each year than actually end their life using it (Public Health Division, Center for Health Statistics, 2017). In 2016, 204 people obtained prescriptions; yet, only 133 people actually took them. Among those considering physician-assisted suicide, the underlying health problem was a malignant neoplasm (78.9% of participants). More than 88% were enrolled in hospice services and died at home. The top four end-of-life concerns shared by participants included losing autonomy (89.5%), being less able to engage in activities making life enjoyable (89.5%), loss of dignity (65.4%), and being a burden on family, friends/caregivers (48.9%).

Critics of Death with Dignity laws continue to express concerns that an individual registered in a program may be enrolled without adequate counseling about other available treatment options to prolong their life, or may self-administer a lethal dose of medication while not fully comprehending the outcome. Moreover, critics are concerned that individuals who are incapable of giving informed consent (e.g., people with cognitive impairments) are being lured into a program as a way to end their own life. However, advocates insist that the program enrollment process is stringent with strict guidelines that specify a timeline for decision-making, counseling, working with individual support networks, and obtaining the lethal medications. No program allows an individual to enroll and immediately consume a lethal dose of medications.

Advanced Directives Planning for end-of-life care needs to begin before life- threatening illness, diseases, or accidents occur. Adults of all ages should have discussions with their family or significant others about their wishes and put together a set of legal

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documents called an advanced directive. By compiling a personalized advanced directive, you are making your end-of- life choices known, including who will speak for you in emergencies if you cannot speak for yourself.

Advanced directives often include multiple documents that outline preferred end-of-life care. Specifically, a living will instructs healthcare providers how an individual wants to be treated if they become seriously ill or are terminally ill or cannot communicate their wishes. Life-saving treatments extend beyond what typically might first come to mind, that is, CPR and automated external defibrillators (AEDs). Less obvious life- saving treatments may also include mechanical ventilation, blood transfusions, surgery, radiation, hydration, nutrition, and antibiotics. A living will is used to specify the problems or conditions for which you want life-saving treatments to be used and not to be used; your personal preference for pain relief; ethical, spiritual, or religious preferences related to your care; and any other specific instructions you want others to know. Clearly, there is a need for a thoughtful discussion about the benefits and risks of life-saving treatments and being able to articulate your personal preferences with healthcare providers and family members before you create a living will so that it represents your wishes. Living will templates can be found online or a lawyer can provide a template. Aging with Dignity is a not-for-profit organization that offers forms and guidance to people considering these important life and death decisions. The forms include personal, emotional, and spiritual questions such as who will make healthcare decisions if the person becomes incapacitated, the potential type of medical and comfort care desired, and what the person wants loved ones to know. Most states accept the “Five Wishes” (FIGURE 4-4) as legally binding if it is filled out correctly. (The document is available at agingwithdignity.org)

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FIGURE 4-4 The not-for-profit organization, Aging with Dignity, provides the “Five Wishes” document which is accepted as an advanced directive in 42 states and the District of Columbia.

Courtesy of Aging with Dignity

A healthcare power of attorney (HCPOA) is an individual appointed to speak on a person’s behalf when he or she cannot speak or express their own wishes. An HCPOA is different from a power of attorney who is identified to complete a specific non-healthcare task on an individual”s behalf (e.g., sell a vehicle) or a financial power of attorney who is responsible for an individual”s finances when he or she is unable to manage them. It is important to include an HCPOA in an advanced directive, as only a HCPOA can make healthcare decisions about the treatment a person will or will not receive.

Another document sometimes included as part of an advanced directive is a Do Not Resuscitate (DNR) order, also called a no code order. DNRs are usually signed when an individual has serious multiple chronic illnesses or is in the last stages of a disease or terminal illness. This legally binding order

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directs healthcare practitioners and emergency responders to withhold life-saving treatments such as CPR and advanced cardiac support in the event that the heart was to stop. Once a DNR is ordered, the individual may wear a special bracelet and a copy of the DNR should be retained in their living area and/or in their medical record so that all providers are aware of the order.

If a person is able to give informed consent and sign a DNR, no one else can revoke it. If a physician signs a DNR on their behalf, no one else can revoke it. If an individual has appointed someone as their HCPOA, that person may sign a DNR on the individual”s behalf and no one else can revoke it (except for the individual). Having ongoing conversations with a HCPOA will help ensure that the HCPOA can effectively represent an individual”s end-of-life wishes when the time comes. Social media frequently distributes images of people who tattoo the words “do not resuscitate” on their neck or chest as a way of ensuring their wishes not to be resuscitated are honored. Unfortunately, a DNR requires multiple signatures the individual, a physician, and sometimes witnesses. A tattoo does not meet the criteria for use as a legal document (Smith & Lo, 2012).

Another document to include in an advanced directive includes direction for organ and tissue donation. According to the National Foundation for Transplants (n.d.), more than 121,000 people are waiting for organ or tissue transplants. Every 11 minutes, another name is added to the list, and every day 22 people die while waiting for a transplant. Unfortunately, only 45% of Americans have registered as organ and tissue donors. One person can make a difference by becoming a donor and potentially saving 8 lives and providing help to 50 additional people.

According to the U.S. Department of Health and Human Services, in 2016, more than 1 million tissue transplants and 82,000 corneal transplants were performed. Kidney transplants led organ transplants with 19,062, followed by 7,842 liver transplants, 3,191 heart transplants, 2,327 lung transplants, 798 kidney/pancreas transplants, 215 pancreas transplants, 147 intestine transplants, and 18 heart/lung transplants. More than

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80% of organ donations come from deceased donors and less than 20% come from living donors (e.g., kidney donors).

Because there are not enough donors available to meet the current need, potential recipients are prioritized and placed on a waiting list. Their ranking is influenced by the potential success of the transplant and other factors including age, blood type, health of immune system, and prior donor status. Allocating in this way assures the best distribution of a limited number of organs. Unfortunately, organs are also allocated based on distance from the recipient. For example, a kidney can remain out of a body 24–36 hours before transplant, but a heart can only last 4–6 hours so is available only to persons nearby.

Many people are hesitant about becoming organ and tissue donors because they may have misconceptions about the process or believe it is not supported by their religion. In response, the National Foundation for Transplants (n.d.) offers the following facts:

Almost anyone can be an organ donor, regardless of age or medical history. All major religions in the United States support organ donation. Donors can still have open casket funerals, and organ donation does not cost the donor”s family any money. If a person is hospitalized, the medical staff provides the best possible care, regardless of organ donor status. Donation is only considered after a patient dies. Donors are needed for all races and ethnic groups. Transplant success rates increase when organs are matched between members of the same ethnic background. Signing the back of your license or a donor card is not enough. To officially register as an organ donor, visit www.donatelife.net and register as donor.

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▶ End-of-Life Care Options When medical treatments for a serious illness are no longer effective or when a terminal illness is diagnosed, discussions about a new plan of care generally include palliative care or comfort care. Palliative care involves treating symptoms to keep the individual comfortable rather than trying to cure the illness. Pain management is only one approach used in palliative care. Other strategies include antibiotics, nutrition, and other interventions that help the individual maintain the best quality of life possible. For example, a person in late stages of Alzheimer”s disease may have an impacted tooth removed if it is causing pain and undue stress. Or an individual may receive oral inhalation treatments to make breathing easier, even though they are dying from lung disease. Palliative care attempts to keep an individual comfortable, not to cure an illness or disease.

Hospice For individuals diagnosed with a terminal illness or injury, hospice care offers compassionate care that includes palliative care. The term hospice is derived from the Latin word “hospes,” meaning both host and guest. As early as the 11th century, Roman Catholics in Europe set up hospices as retreats of hospitality for travelers and way stations for the weary, sick, and dying. Those hospices were commonplace through the middle ages (Cagle et al., 2014). More recently, physician Dame Cicely Saunders founded St. Christopher”s Hospice for terminally ill patients in 1967 as the first modern hospice in London.

In the United States, legislation for hospice care was introduced in the 1970s but it did not pass into law until 1982, with a Medicare bill granting benefits nationally for Medicare recipients starting in 1986. Since that time, the number of hospice patients has steadily increased. An increasing number of people are dying while under hospice care, as it continues to be financially supported by Medicare and other insurance plans.

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Hospice care can only be received after an individual has been certified by two physicians as having 6 months or less to live (National Hospice and Palliative Care Organization, 2017). Every 6 months, the recipient is either recertified to receive another 6 months of services or released if the illness has gone into remission and they do not require services. Recipients can be recertified to reenter the program and receive services at a later date.

In 2015, of the 1.38 million Medicare beneficiaries receiving hospice services, only 13% of hospice recipients received services for more than 6 months. The mean length of service was 69.5 days, but the median number of days of services received was 23 days. Among all Medicare hospice recipients in 2015, 88.3 % died in hospice care and 6.9% were discharged as they were no longer deemed terminally ill (National Hospice and Palliative Care Organization, 2017).

During the same year, hospice care was utilized predominately by individuals age 80+ (64.4%), Whites (86.8%), and females (58.7%; National Hospice and Palliative Care Organization, 2017). Among them, approximately 45% had at least four chronic health conditions (Kaiser Family Foundation, 2016), although the top three primary diagnoses included cancer (27.7%), cardiac and circulatory problems (19.3%), and dementia (16.5%). Persons with dementia received the most days of care: a mean of 105 days and a median of 56 days of care (National Hospice and Palliative Care Organization, 2017).

Of all persons enrolled in Medicare in 2014 who also died in the same year, 46% utilized hospice services, an increase from 21% in 2000 (Kaiser Family Foundation, 2016). The vast majority (97.8%) of hospice care is provided in the home, yet only 53% of the $15.9 billion costs paid by Medicare were for home-based care, indicating that the cost of care provided in nursing facilities and acute care settings is proportionately higher.

According to the National Hospice and Palliative Care Organization (2017), there are approximately 4,000 hospice agencies (62.8% with a for-profit tax status) throughout the United States. These agencies employ approximately 6,000

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healthcare workers who work exclusively in this segment of health care (Green, 2015). Additionally, over one half million volunteers deliver hospice services to recipients and their families (National Hospice and Palliative Care Organization, 2017).

A hallmark of hospice care is that it utilizes an interdisciplinary team to offer support to the recipient and the family. The interprofessional approach helps support the recipient”s quality of life by providing comfort and care in the recipient”s preferred surroundings without pain and invasive medical treatment. In addition to basic nursing services providing palliative care, other types of services available are homemaker/companion services, pastoral care, social services support, recreational and rehabilitation therapy, nutrition/meal services, and social network support. The interdisciplinary approach embraces a biopsychosocial or holistic approach to maintain the well-being of recipients. TABLE 4-3 illustrates the differences between approaches used in traditional medical care and hospice care.

TABLE 4-3 Comparisons Between Traditional Medical Care and Hospice Care

Traditional Medical Care

Hospice Care

Fragmented Holistic (multidisciplinary, interdisciplinary, or interprofessional teams)

Cure is goal Cure is not the goal; palliative care is the goal

Death is seen as a failure

Ensure a good death

Focus on the physical

Biopsychosocial and spiritual

Physician directed

Client directed (family involved)

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Pain meds feared as addictive

Client in control of pain meds

Hospital or institution

Home or hospice facility (client and family choice)

Symptoms treated in isolation

Symptom control

Death ends care Bereavement care up to 1 year post

Data from Peat (1988) and Understanding Hospice (n.d.).

Studies on the overall value of hospice services have found that recipients tended to be more mobile, less anxious, and less depressed. Family members and hospice staff were also perceived as more accessible (FIGURE 4-5; Rhodes, Mitchell, Miller, Connor, & Teno, 2008).

FIGURE 4.5 Hospice care settings make it easier for loved ones to visit than hospital settings.

© Photographee.eu/Shutterstock

Working with Dying Patients Working with dying individuals is often referred to as a calling. It is not easy to watch individuals live to their final days and moments, yet some healthcare providers are more comfortable with the dying process. As a healthcare practitioner, it is

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important that you maintain your professional perspective and remember that the dying process is not about you. Your role is to support the dying person and their family. Key points to remember include the following:

Offer words of kindness and support. Refrain from judging anyone or expressing discontent. Treat everyone with respect and dignity. Listen and watch. Reflect on the situation to learn more about yourself.

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▶ Summary This chapter has explored definitions and the historical perspectives of death, and touched on some cultural and personal perspectives of the dying and grieving processes. Certainly, over time, our concept of death has changed as we are able to enable living (in a technical sense) over a long period of time through technology.

An overview of some theories of grief and the grieving process included those of Freud, Kübler-Ross, Shneidman, Bowlby, Rando, and Worden. These theorists, including some thanantologists, provided differing perspectives on grief by explaining experiences of people who are dying or coping with a significant loss. There is no singular response to grief; each individual needs to cope with loss in their own way. Yet, understanding differing viewpoints can help inform professional practices and be useful as a springboard to managing personal responses to loss. Understanding differing perspectives on death and dying can help a healthcare professional gently educate a client who may be struggling in their own grieving process. The perspectives provided are not prescriptive, only educative. Sometimes it seems to help knowing that what one is experiencing is not abnormal, but rather just part of everyday life. Perhaps, one or two theories resonated with your own experience in the realm of loss.

As a society, we have become increasingly removed from death and the dying process with our increased reliance on technology. Instead of dying at home surrounded by family, more people die in institutions such as hospitals or hospice facilities. As a result, our perspectives on death and have evolved and our desire to control our own deaths have increased with the implementation of death with dignity laws, use of palliative care, and reliance of advanced directives to guide end- of-life care. Hospice services continue to be relied upon, but remain underused; perhaps because going into “hospice care” signals a resignation that hope for a cure no longer exists.

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This chapter is not intended to make the reader a grief counselor, but it has been included to increase knowledge about loss, grief, death, and dying. Since older adults are more likely to experience loss than young adults, the likelihood that you will encounter someone in the throes of grieving is very likely. Our advice is simple—dare to extend empathy to a person who has sustained a loss; listen intently, be nonjudgmental, and simply and genuinely be present. You can make a difference.

CASE STUDIES

Case 1: Mary Jo lost her partner of 47 years about 6 months ago. She was Jim”s primary caregiver over the course of his cancer treatment that lasted 2 years. For the last month of his life, Jim and Mary Jo were able to receive assistance from hospice services, for which Mary Jo was extremely grateful because this allowed her to keep Jim at home, which is where he wanted to spend his last days of life. Since Jim”s death, Mary Jo has spent most of her time alone in the big house they shared. Friends have called wanting her to go out with them, but she always has an excuse (usually, she is too tired, has too much to do, or not feeling that well). Mary Jo and Jim had no children. Mary Jo has no known health problems and is retired from a career at the post office. She belongs to a church, but has not attended since the funeral. Her former hobbies included knitting, baking for friends and family (siblings and nieces and nephews), and shopping.

1. Discuss how the grieving process might be impacting Mary Jo”s life. Have you any concerns?

2. Discuss how hospice may or may not be able to help Mary Jo at this time. How do you think hospice helped prior to Jim”s death?

3. If you were asked to go and visit with Mary Jo as a healthcare professional, what would you expect and what are some of the ways you might be helpful to Mary Jo.

Case 2: Carter has been a grief counselor in a hospice program for about 10 years. When he first entered the profession, he felt a

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personal connection to each of his clients and was genuinely moved by their experiences. He put a great deal of effort into his work and felt a sense of accomplishment when his clients progressed to the point where they no longer needed him. In the last year or two, his enthusiasm for his work has started to dwindle. Rather than feeling energized by his work, Carter instead finds it emotionally exhausting, and he no longer looks forward to meeting with his clients. Although he intellectually understands what they are going through, he finds himself fighting the urge to tell his clients, “Stop complaining! Everybody goes through this sooner or later! It doesn”t matter, life goes on!” Carter knows that what he is feeling is not appropriate, but is not sure what he should do.

1. Is Carter experiencing burnout or compassion fatigue? How can you tell and what caused it?

2. What can Carter do to improve his situation?

Test Your Knowledge

Review Questions

1. The difference between circumstantial and developmental losses is that

a. circumstantial losses are brief and transitory, while developmental losses are long term.

b. circumstantial losses are expected, while developmental losses are random.

c. circumstantial losses are unexpected, while developmental losses are generally anticipated.

d. circumstantial losses generally have positive outcomes, while developmental losses are always negative.

2. Which of the following is true about Rando”s stages of grief?

a. The stages explain the exact step-by-step process of grief

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b. The stages are always followed in a specific order c. The stages are guidelines but each person responds

differently d. The stages explain why people have grief that

comes and goes

3. Clinical death occurs when a. there are no spontaneous movements (and motor

reflexes are not evident). b. the lungs are no longer able to oxygenate the blood

(and blood stops circulating). c. the person is not breathing on their own. d. the person does not respond to painful stimuli.

4. Physician assisted suicide is a. illegal in the United States. b. legal but only for the terminally ill. c. legal in parts of Europe. d. frowned upon by all the world”s religions.

5. How do Hospice and traditional care compare? a. Hospice care and traditional care both end at death b. The patient is given control over pain medication in

traditional care c. Hospice is curative d. Hospice focuses on symptom control

Learning Activities

1. If a person lost a limb in an automobile accident, would that be considered a circumstantial loss or a developmental loss, and why?

2. Select any two of the five progressive stages of grief and provide a specific example of each.

3. The six steps of mourning, in no particular order, are readjustment, reaction, recognition, recollection, reinvesting, and relinquishing. The three phases of active mourning include avoidance, confrontation, and accommodation. Identify which step(s) of mourning are

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associated with each phase of active mourning. 4. Describe what a good death means for you. 5. Do you agree with Death with Dignity laws? Why or why

not?

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© patpitchaya/Shutterstock.

CHAPTER 5 Health Literacy and Clear Communication: Keys to Engaging Older Adults and Their Families Audrey Riffenburgh, PhD Sue Stableford, MPH, MSB

CHAPTER OUTLINE

A PATIENT’s EXPERIENCE OF HEALTH COMMUNICATION

UNDERSTANDING AND USING HEALTH CARE: WHY OLDER ADULTS OFTEN STRUGGLE

Health Literacy Challenges Organizational Barriers Individual Factors

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LITERACY, NUMERACY, AND HEALTH LITERACY CHALLENGES

Literacy Numeracy

IMPACTS OF LITERACY AND HEALTH LITERACY SKILLS: TWO MAJOR KEYS TO GOOD HEALTH

THE IMPACT OF NATIONAL POLICIES ON HEALTH LITERACY PRACTICE

ACCREDITING, STANDARD SETTING, AND POLICY ORGANIZATIONS

FEDERAL GOVERNMENT AGENCIES

THE BUSINESS AND LEGAL CASE FOR HEALTH LITERACY

CLEAR HEALTH COMMUNICATION: AN OFTEN OVERLOOKED NECESSITY

WHAT IS PLAIN LANGUAGE? HOW WILL I KNOW IT IF I HEAR IT?

WHAT IS PLAIN LANGUAGE? HOW WILL I KNOW IT IF I SEE IT?

A CALL TO ACTION

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Define the term health literacy. 2. Describe the health literacy skills of older adults

according to their performance on the 2003 National Assessment of Adult Literacy (NAAL) as well as according to other research studies.

3. Describe the impact of older adults’ limited health literacy skills on their health.

4. Describe the role of health system communication,

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processes, and demands. 5. List six plain language standards for verbal patient

teaching. 6. Compare the reading level of health materials with the

reading abilities of the majority of older adults and discuss the mismatch or gap between them.

7. List 5–10 plain language standards for written information.

8. List three health professional organizations and three federal agencies that publish standards or policies related to health literacy.

9. Discuss how you can address health literacy in your health career.

KEY TERMS

Health literacy The Joint Commission Limited literacy skills Literacy Numeracy Plain language Plain language guidelines Reading levels Sensory deficits Shame-free environment Teach back

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▶ A Patient’s Experience of Health Communication Meet Cecilia. She is 78 years old and lives independently in the same town as her daughter and her grandchildren. She has arthritis, which makes it a little hard for her to get around. She takes precautions by wearing a medical alert device, although she has refused to get rid of her small area rugs. Early one morning, she trips on one and falls to the floor. She pushes her emergency medical button and this begins her journey into the unfamiliar land of health care.

During Cecilia’s three days in the hospital, both she and her well-educated daughter, Rita, encounter many difficulties understanding and making decisions about care. Everything is unfamiliar—the care routines, the words used to explain things, the medicines prescribed. Time with doctors and nurses is short, with little time to ask questions or process the answers. Hospital surgeons repair Cecilia’s broken hip, but now she faces additional challenges: managing pain and medications, learning exercises to regain strength and mobility, using unfamiliar assistive devices, choosing a rehab facility, and transitioning from hospital to rehab to home. Cecilia and Rita struggle to make sense of complex consent forms, written care and discharge instructions, and verbal information that fly by quickly.

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▶ Understanding and Using Health Care: Why Older Adults Often Struggle Health Literacy Challenges As Cecilia and Rita face these unexpected and complex challenges, there are many factors at play. These factors are related to two general categories: (1) individuals’ skills, knowledge, and capacities and (2) the demands and complexities of healthcare systems (Brach et al., 2012; Koh, Brach, Harris, & Parchman, 2013; Nielsen-Bohlman, Panzer, & Kindig, 2004; Centers for Disease Control and Prevention [CDC], 2009a). This interaction of factors greatly influences an individual’s health literacy. A definition of individual health literacy is “the degree to which an individual has the capacity to obtain, communicate, process, and understand health information and services in order to make appropriate health decisions” (Patient Protection and Affordable Care Act, 2010).

Contemporary use of the term health literacy also includes the complexities and challenges presented by healthcare organizations. These organizations have a responsibility to ensure that patients and their families can understand and use information and services they need for their health. In recognition of this responsibility, a definition of health literacy for organizations has been developed. “Healthcare organizations that make it easier for people to navigate, understand, and use information and services to take care of their health” are called health literate organizations (Brach et al., 2012, p. 1).

Health literacy challenges everyone, albeit in varying circumstances and to varying degrees. The results of the most recent U.S. survey of adult literacy skills, which included health-related items, revealed that only 12% of adults scored in the proficient level for health literacy (Kutner, Greenberg, Jin, & Paulsen, 2006). In addition, 36% of U.S. adults scored at the below basic or basic levels. Significantly, older adults scored

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the lowest of all age groups—about 60% had below basic or basic health literacy skills (Kutner et al., 2006). Yet, as the age group using the most health care, they most likely need better skills to care for themselves effectively.

An example of one of the health literacy tasks labeled as intermediate was: “Determine what time a person can take a prescription medication, based on information on the prescription drug label that relates the timing of medication to eating” (Kutner et al., 2006, p. 6). Essentially, this means that a majority of older adults, due to their lack of an intermediate level of health literacy skills, cannot read, understand, and use this type of medication label (FIGURE 5-1). Yet, one needs to remember that this age group takes the most medications!

FIGURE 5-1 Many older adults are unable to read, understand, and use prescription drug labels.

© Burlingham/Shutterstock

We now look at some of the challenges that cause older adults to struggle with understanding and using healthcare organizations and systems.

Organizational Barriers When patients and families enter a healthcare environment, there are a great many things they need to know or quickly learn to effectively understand and use the healthcare services. The organization’s system demands and complexities create barriers to patients, families, and caregivers.

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Healthcare organizations are under tremendous pressure in competitive markets with shifting regulations and financial stresses. This pressure often leads to the creation of systems and processes that can be challenging for patients and providers alike. For example, healthcare organizations may impose time pressures on providers and staff to move patients through the system very quickly.

In addition, providers and staff usually have little to no training in verbal communication skills. This despite many studies that indicate an increased risk of malpractice lawsuits due to ineffective communication and the ability to create and maintain a good relationship with patients (Olson & Windish, 2010; Posner, Severson, & Domino, 2015; Trudeau, 2016). Providers often communicate quickly, using unfamiliar medical vocabulary for unfamiliar concepts. In most systems, neither providers nor staff typically check for patients’ comprehension (Karliner et al., 2012).

Patients and their families may also struggle to understand print and web-based information. Many healthcare systems pay scant attention to creating and providing print and web-based materials that are appropriate for the literacy, numeracy, and English language skills of much of the public.

Individual Factors In addition to the challenges presented by organizations, individuals’ skills and abilities come into play. Remember Cecilia’s and Rita’s situation? Consider that they are both likely to have limited knowledge of medical principles, the anatomy of the hip, and of new tasks they need to accomplish. Cecilia may have sensory deficits such as vision or hearing problems. Just as she needs to learn new tasks, she may also be experiencing cognitive decline from the stress of the situation, the effects of pain medication, and possibly depression. The emotional strain of the situation is likely to be significant for both of them, given the sudden new demands and changes in both their lives.

Like Cecilia and Rita, many older adults as well as their families and caregivers struggle with the same issues when thrust into the unfamiliar land of health care. They might struggle in a clinic, a pharmacy, a mental health setting, etc.

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They may feel rushed, afraid, and too intimidated to ask questions when they do not understand. Other challenges patients may face include mastering arcane health insurance systems; having the specialized vocabulary, knowledge, and skills to manage their own health; and using multiple information formats (such as booklets, charts, and tables) in multiple locations to accomplish multiple tasks.

Additional barriers to adequate health literacy can include diminished cognitive skills along with language and cultural differences. Many health-related tasks require adequate processing speed, attention span, memory, and reasoning capacity (Wolf et al., 2009), which some older adults may not possess, especially during the stress and confusion of being in a healthcare context. Recent research also highlights the negative impacts of impaired vision or hearing on cognitive abilities (Chen, Bhattacharya, & Pershing, 2017; Lin et al., 2013; Peelle, Troiani, Grossman, & Wingfield, 2011; Rogers & Langa, 2010).

Older adults may also experience barriers to using the Internet to obtain health information or using a patient portal in an electronic health record. In this electronic age, one might think that everyone knows how to use a computer, and that “print is dead,” and that the Internet is the major source of health information. However, according to a Pew Internet survey on online use, about 9 in 10 U.S. adults use the Internet but only 4 in 10 people over the age of 65 do so (Internet/broadband fact sheet, 2016). Moreover, only half of U.S. adults over the age of 65 have Internet access at home.

Older people may also lack experience using technology and/or navigating the Internet (Taha, Sharit, & Czaja, 2014). Other studies show that web-based health information is usually at high reading levels (Friedman, Hoffman-Goetz, & Arocha, 2006; Walsh & Volsko, 2008) similar to printed materials. Therefore, even if older adults do access health information, this material may be too difficult to be helpful (FIGURE 5-2). Many U.S. adults struggle with limited literacy, numeracy skills, and/or limited English proficiency. We look at these factors and their impact on health literacy in more detail in this chapter.

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FIGURE 5-2 While some older adults may have access to web-based health information, they may find that it is at a level they cannot fully

understand. © Michael Jung/Shutterstock

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▶ Literacy, Numeracy, and Health Literacy Challenges For individuals, proficient health literacy depends on the building blocks of literacy and numeracy skills (Smith, Curtis, O’Conor, Federman, & Wolf, 2015). These building blocks support the development of knowledge, skills, and capacities needed for health literacy to emerge. These three concepts are related but distinct. This section addresses these three concepts and their interrelationship.

Literacy The term literacy includes a constellation of skills, including reading (e.g., word recognition, fluency, drawing inferences from text), writing, speaking, and listening as well as other skills such as thinking analytically and making decisions. In the National Assessment of Adult Literacy (NAAL), 43% of all U.S. adults scored at the below basic or basic levels (Kutner, Greenberg, & Baer, 2005). (The other levels are intermediate and proficient.) However, almost 60% of adults aged 65 and older scored at the below basic or basic levels. Compared to all other age groups, adults aged 65 and older had the lowest average scores (Kutner et al., 2005).

Given the limited literacy skills of older adults, it is easy to see how they would struggle with understanding health information. Well over 800 studies have documented the mismatch between the literacy demands of most health and medical information and adult literacy skills (Rudd, 2010).

Numeracy Limited numeracy skills are increasingly being recognized as an independent cause for concern, compromising patients’ abilities to understand and act on health information (Smith et al., 2015). The term numeracy refers to a variety of skills, including basic computing, measuring and timing medicines, assessing risk, calculating percentages and statistics, interpreting food

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labels, and reading medical devices (Apter et al., 2008). In the NAAL survey mentioned earlier, more than 70% of U.S. adults aged 65 and over scored at below basic or basic numeracy levels (Kutner et al., 2006).

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▶ Impacts of Literacy and Health Literacy Skills: Two Major Keys to Good Health Research studies conducted over the past 20 years have highlighted the huge impact both literacy and health literacy skills can have on health and health outcomes (Al Sayah, Majumdar, Williams, Robertson, & Johnson, 2013; Batista, Lawrence, & Sousa, 2017; Peterson et al., 2011). Nearly 100 studies document a relationship between limited literacy skills and a variety of adverse health outcomes, including greater risk of hospitalization, lower medication adherence (Federman et al., 2014), and less knowledge of self-care guidelines for chronic conditions such as asthma and diabetes (Al Sayah et al., 2013; Berkman, Sheridan, Donahue, Halpern, & Crotty, 2011; Rudd, Anderson, Oppenheimer, & Nath, 2007).

In addition, inadequate health literacy is independently associated with greater risk of hospital admission (Mitchell, Sadikova, Jack, & Paasche-Orlow, 2012; Moser, Robinson, Biddle, & Pelter, 2015), higher likelihood of using emergency departments (Herndon, Chaney, & Carden, 2011), lower use of preventive health services such as flu and pneumonia shots (Fernandez, Larson, & Zikmund-Fisher, 2016), poorer physical and mental health (Wolf, 2005; Wu, Moser, DeWalt, Rayens, & Dracup, 2016), and higher all-cause mortality (Baker et al., 2007; Moser et al., 2015).

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▶ The Impact of National Policies on Health Literacy Practice From an organizational perspective, health literacy means attending to the communication demands placed on patients (and their families and caregivers) and how well or poorly an organization accommodates their communication needs. The responsibilities of medical offices, clinics, and systems are well articulated in a National Academy of Medicine (formerly the Institute of Medicine) report Ten Attributes of Health Literate Health Care Organizations (Brach et al., 2012). This report makes it clear that most organizations place health literacy demands on most adults that are significantly beyond their reading, numeracy, listening, and question-asking skills. Situational stress further compromises ability to absorb and process information.

Think of Cecilia and her daughter having to suddenly cope with a broken hip. They are thrust into trying to understand, decide, and consent to unfamiliar surgery, medications, and care. As an elder, Cecilia cannot process information as quickly as she used to, and has also arrived at the hospital without her glasses. Even her well-educated daughter is baffled by the consent forms and fast-paced verbal information shared in medical language.

These kinds of communication disconnect results in serious consequences for care systems as well for patients and their families. Major national groups responsible for accrediting hospitals and licensing physicians, establishing professional practice standards, and issuing policies are speaking out about the problem. Federal agencies have played a key role in raising awareness and promoting health literacy as well.

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▶ Accrediting, Standard Setting, and Policy Organizations The Joint Commission, which accredits hospitals around the country, points out in a report that communication failures are the underlying root cause of 65% of sentinel events—instances of serious patient harm. The Commission urges hospitals to make effective communications a priority to protect patient safety (The Joint Commission, 2007).

The Commission’s 2010 Roadmap for Hospitals encourages the use of plain language at all points of patient care from admissions to discharge, to increase patient and family understanding (The Joint Commission, 2010). The Roadmap integrates health literacy with cultural competence, and reflects new accreditation requirements for hospitals to meet the oral and written communication needs of all patients, including those with speech, hearing, and other possible disorders that compromise their communication abilities.

The National Committee for Quality Assurance (NCQA) 2017: Recognition Standards for a Patient-Centered Medical Home include a new competency which states that the practice “Builds a health-literate organization … and act(s) to establish processes that address health literacy to improve patient outcomes” (NCQA Patient-Centered Medical Home Standards and Guidelines, 2017, p. 46)

The National Board of Medical Examiners now requires medical students to demonstrate communication competence on the U.S. Medical Licensing Examination. Students must pass this exam to earn their medical degree and enter a residency program. In encounters with simulated patients, examinees need to “demonstrate skills in providing information by use of terms the patient can understand…statements need to be clear and understandable and the words need to be those in common usage” (Federation of State Medical Boards of the United States and the National Board of Medical Examiners, 2017, p. 10).

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The American Medical Association (AMA) played an early leading role in alerting physicians and other care providers about the health literacy problem and in supporting solutions. The AMA is one of a growing number of health profession organizations to publish policy statements, along with white papers alerting physicians about the dangers of “medspeak” and how to improve communications (Ad Hoc Committee on Health Literacy, Council for Scientific Affairs, 1999; American Medical Association, 2006; Killian & Coletti, 2017; Weiss, 2007) (FIGURE 5-3).

FIGURE 5-3 The American Medical Association (AMA) was instrumental in alerting healthcare providers about the health literacy problem and in providing ways to improve communication between

providers and patients. © Rocketclips, Inc./Shutterstock

Allied health profession’s organizations, including the American Dental Association, the American Occupational Therapy Association, and the American Physical Therapy Association, have urged consideration of health literacy in policy statements and by promoting resources for student and practitioner learning (ADA Council on Access Prevention and Interprofessional Relations, 2009; American Physical Therapy Association, 2008; Braveman, Gupta, & Padilla, 2013).

The National Academy of Medicine, a highly esteemed nonprofit organization that serves as an independent advisor to government and the private sector, has long focused on health literacy. The Academy’s Health Literacy Roundtable,

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established in 2006, is comprised of leaders from academia, industry, government, foundations, and patient/consumer representatives who meet biannually to address health literacy topics. Their informed discussions and evidence-based white papers have resulted in numerous publications linking health literacy and key healthcare issues such as health equity, patient safety, medication labeling, health insurance, and more. Publications are publicly available on their website (National Academy of Medicine, n.d.).

A 2017 report from the Academy, Vital Directions for Health and Health Care, links attention to health literacy with the changing expectations of health care to improve quality, achieve better outcomes, and reduce costs. It includes a recommendation to communicate with people in a way “appropriate to literacy” to “ensure that people, including patients and their families, are fully informed, engaged, and empowered as partners in health and health care choices…” (Dzau et al., 2017, p. 11).

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▶ Federal Government Agencies The federal government issued the Plain Writing Act in 2010, requiring all information from the government created for the public be written in plain language (Plain Writing Act. Public Law 111–247 111th Congress, 2010). This law has supported federal agencies and departments in creating additional policies, revamping written and electronic communications, and developing publicly accessible tools and training programs.

The Centers for Disease Control and Prevention (CDC) offers an extensive array of materials on a dedicated web section, including a highly regarded, skills-based training program (CDC, n.d.). The CDC also offers an assessment tool for written materials—the Clear Communication Index (CDC, 2016), which uses a numerical rating system to evaluate characteristics of printed matter. Low ratings of organizational materials can be a “wake-up call” to pay attention to health literacy and plain language.

The National Institutes of Health (NIH) promotes health literacy on their website: “Saves Lives. Saves Time. Saves Money.” The NIH offers materials, resources, and training to support the statement (National Institutes of Health, n.d.).

The Agency for Healthcare Research and Quality (AHRQ) offers the Health Literacy Universal Precautions Toolkit (Brega et al., 2015) to help healthcare professionals and care systems learn how to systematically address and embed health literacy practices into clinical care.

The AHRQ also publishes the Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys, which ask patients to assess the quality of care they received after a hospital stay, physician-group visit, homecare services, hospice services, and more (Agency for Healthcare Research and Quality, 2014). Notably, many survey questions pertain to communication and the level of ease or difficulty encountered in understanding both oral and written information. Results from this survey affect hospital reimbursement rates.

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The Department of Health and Human Services (HHS) promotes health literacy and plain language as part of updated Cultural and Linguistic Access Standards (CLAS)—a set of 15 action steps intended to advance health equity, improve quality of care, and help eliminate health care disparities. The Standards require “easy-to-understand print and multimedia materials and signage…” (U.S. Department of Health and Human Services, Office of Minority Health, 2012, p. 1).

The Office of Disease Prevention and Health Promotion within HHS promotes the National Action Plan to Improve Health Literacy. The plan outlines concrete action steps for all sectors of our society to address health literacy, including schools, workplaces, and healthcare systems (U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, 2010).

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▶ The Business and Legal Case for Health Literacy Beyond standards, legislation, policies, tools, and exhortations lies a business case for attending to this issue. The Centers for Medicare and Medicaid Services (CMS) use the standardized patient satisfaction data captured in CAHPS surveys to help determine merit-based incentive payments for physician groups (Centers for Medicare and Medicaid Services [CMS], 2017). As noted above, one of the major areas surveyed is how well providers communicate.

Similarly, Medicare hospital reimbursements for patients with traditional Medicare are based partly on “Value-Based Purchasing,” a program that rewards hospitals not only for excellence in care practices and outcomes, but also for achieving high HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) scores. This hospital version asks patients with a recent hospital stay to rate their satisfaction with communication from nurses and doctors, as well as communication about their medications and discharge instructions (CMS, 2015).

One large business consulting firm has published research showing that hospitals with superior patient experience, as measured by HCAHPS scores, generate 50% higher financial return than hospitals with average scores (Stephan, 2016).

Finally, the business case includes “risk avoidance,” the term lawyers use to advise clients about limiting liability and thus their costs. One major way healthcare providers and systems can avoid needless risk is to assure informed consent (FIGURE 5-4). This means that the written and verbal information is understandable to the patient or the patient’s agent. Studies have shown that most written consents for surgeries and procedures require high levels of literacy skills, which most patients do not have (Institute of Medicine, 2015). Poor communication, including poor consent practices, is a major cause of malpractice claims (Posner et al., 2015;

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Spector, 2010; Trudeau, 2016). A Temple University toolkit summarizes research about consent forms, tells care providers and systems why they need to pay attention to this issue, and shows them how to do it (Fleisher et al., n.d.).

FIGURE 5-4 Using understandable consent forms is one way healthcare providers can limit their liability.

© Sherry Yates Young/Shutterstock

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▶ Clear Health Communication: An Often Overlooked Necessity Despite the research studies, standard setting, and policy advances, public health and healthcare organizations often treat communication as an afterthought. Other issues command higher priority. Or perhaps providers and others assume that adults working in health disciplines know how to speak, teach, and write well enough to get their points across. Although clear communication is essential to good health outcomes, it does not happen automatically, as Cecilia’s experience as well as research studies show.

A large and only partially answered question is how to best communicate, both verbally and in writing, so that patients, families, and their caregivers do understand critical health information. What works to motivate leaders of healthcare systems to systematically address communication challenges? What are the best solutions from both the patient and the system perspectives?

Researchers have some partial answers, although much remains to be learned. One major national research review, completed in 2004, noted that we still have more questions than answers (Dewalt, Berkman, Sheridan, Lohr, & Pignone, 2004). An update of that review, published in 2011, confirmed and somewhat expanded the original results (Berkman et al., 2011). The reviews have shown that using specific patient teaching techniques such as “teach back” and certain plain language writing techniques such as avoiding jargon increase the likelihood that adults will be able to understand and use health information (Davis et al., 1998; DeWalt et al., 2006; Schillinger et al., 2003; Wali, Hudani, Wali, Mercer, & Grindrod, 2016; Wolf et al., 2011).

The organizations that have drawn national attention to this problem—The Joint Commission, the American Medical Association, the federal government, and others—have proposed similar solutions. The Joint Commission report contains 35

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specific recommendations for improving communication in hospitals and across the continuum of care. Major emphasis includes teaching and writing in plain language (The Joint Commission, 2007). Similarly, the AMA guide, Help Patients Understand, states: “…clinicians can best serve their patient populations by providing all patients with easy-to-understand information” (Weiss, 2007, p. 15). Also, the federal government devotes multiple websites to teaching employees and others how to communicate effectively in plain language (U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, n.d.).

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▶ What Is Plain Language? How Will I Know It If I Hear It? Multiple organizations promote effective verbal communication strategies. Two sources are the Health Literacy Universal Precautions Toolkit (Brega et al., 2015) and Communicating with Older Adults (Gerontological Society of America, 2012). The AMA guide (referenced earlier) reflects best practices included in these sources. Here are the six verbal communication tips that the AMA recommends that all physicians adopt to improve patient understanding (Weiss, 2007, p. 29). (The authors provide additional comments.)

1. Slow down. This is especially important to help older adults who may have hearing loss and who do not mentally process information as rapidly as when they were younger.

2. Use plain, nonmedical language. Another way to say this is to use everyday language or conversational language. Pretend you are talking with a relative or neighbor. Our usual spoken language is far simpler than formal communication.

3. Show or draw pictures (FIGURE 5-5). This is helpful in written materials as well. We know from research that pictures help older adults learn and remember information (Houts, Doak, Doak, & Loscalzo, 2006). Similarly, using models can increase patient understanding. For example, anatomical models can help patients understand how their bodies work. Food models can demonstrate healthy food choices and appropriate portion sizes.

4. Limit the amount of information and repeat it. This means prioritizing information to the three to five most important points. Most adults can remember only three things from a healthcare visit.

5. Use the teach-back technique. Sometimes, this is called the “show-me” or “demonstrate-back” or the “teach-to-goal” technique. This means, have patients state in their own words what they are to do or demonstrate how they will perform a

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certain action such as use of a medical device. So, a provider might say something such as: “Ms. Smith, how will you explain what we’ve discussed to your family when you get home?” or “Ms. Smith, I want to make sure I’ve given clear directions. Would you tell me in your own words the key steps to take when you get home?” This gives the provider a chance to learn what the patient understands and to fill in or repeat missing information. The essential element of this technique is for the provider to take responsibility for being clear and not to “grill” the patient as if it were a test with shame attached for failure.

6. Create a shame-free environment: Encourage questions. Some providers say: “What questions do you have?” instead of the more common “Do you have any questions?” By asking “What questions do you have?” it is assumed that the adult does have some questions and now will feel more comfortable asking them.

FIGURE 5-5 The AMA recommends six verbal communication tips for providers and their patients, including show or draw pictures.

© Monkey Business Images/Shutterstock

Three additional tips also help older adults learn more effectively from healthcare visits:

1. Frame the conversation first. This means, tell the adult what you will be talking about before launching into the discussion. This helps prepare him or her to listen and hear information with understanding. So, you might say: “Ms. Smith, I’d like to start you on a new medicine. Let me explain what it is, how to

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take it, and how it should help.” Then, go on with your teaching points.

2. Encourage older adults to bring a friend or family member to the visit. Another set of eyes and ears, or someone to actually take notes, can help the patient remember what was discussed during the visit. However, the provider still needs to address the client, not the friend or family member. Often, older adult clients are ignored, especially when a younger person attends the visit with them.

3. Give plain language written information that reminds the patient of what to do, how to do it, and why. Most of us forget up to 50% of what we have heard as soon as we leave the exam room (Kessels, 2003). We all need reminders about actions and next steps. Many older adults also find it helpful to have written information to share with family members who have not been at the clinical visit but help care for them.

If some of these techniques had been used with Cecilia and her daughter, would they have been less confused and more able to partner with the team in making care decisions? If the healthcare providers had given easy-to-read discharge instructions and used the teach-back technique, would they have realized that Cecilia and Rita were struggling to understand many aspects of this traumatic situation? Perhaps, Rita could have learned how to better prepare for her mother’s inevitable homecoming and the many adjustments to living space, medication management, and daily routines that would be needed. Cecilia’s daughter faces huge caregiving tasks ahead.

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▶ What Is Plain Language? How Will I Know it if I See it? Cecilia did not bother trying to read the printed information handed to her. Even Rita, her well-educated daughter, had trouble reading and understanding some of it due to unfamiliarity with the medical terms and jargon along with the fatigue and stress caused by the medical trauma. This outcome is not surprising, given the high reading demands of most health and medical information. Although plain language is not a total solution to a complex problem, it is a great starting point for creating more accessible print and web-based materials (Drake et al., 2017). Plain language principles also apply to designing information for other media such as DVDs and social media applications.

Many groups publish plain language guidelines, including federal agencies, healthcare organizations, insurance companies, private consulting firms, and the Plain Language Association International. Guidelines and checklists are easy to access online. Try using them when you are creating easier-to-read information (Lane, Blanco, Ford, & Mirenda, 2005; Plain Language Association International, 2017; CDC, 2009b).

Plain language guidelines accepted by multiple expert groups include:

Content: Information is accurate, up-to-date, and limited. The focus is on behavior—what the reader needs to do. The average reader can use and remember no more than about five major points at one time. If a topic is complex, such as managing a parent’s broken hip, break it up into smaller sections so that an adult can read small amounts at a time. Structure/organization: Structure and organize information from the user’s perspective. This means putting the most important information first and creating small chunks with good headers or subtitles. Some adults read just the subtitles, so headings really need to convey key points. Health writers

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typically lead with explanations about anatomy or statistics about how many people have a certain problem. Plain language reverses this and begins with clear action messages. The background information comes later, if deemed to be important at all, because it is less critical. Do you think that initially Cecilia and her daughter could focus on the number of broken hips across the country and their surgical outcomes? Writing style: Talk directly to the reader in a positive, friendly tone as much as appropriate and possible. As noted earlier, most adults best understand everyday language. These are typically short words (one or two syllables) common in spoken language. When medical terms are used such as the name of a condition, a pronunciation should be given and the term explained. Sentences should also be short, about 12–15 words on average. Use mostly active voice and explain general principles with concrete examples. For example, instead of writing about regular exercise, write about walking most days of the week for at least one-half hour. To engage your readers even further, use testimonials or short example stories of older adults who share the reader’s concerns or who have solved a common problem. Appearance and appeal: The first few seconds that an adult looks at a document (or a website) create a lasting impression. So, we need to make sure our print materials and websites are attractive, inviting, and look easy to read. This almost always means plenty of white space, not a page crammed full of print or a home page with too many visual distractions. The size of the print needs to be large enough for reading ease (usually about 13- or 14-point typeface for older adults), and the print/paper contrast should be sharp with dark print and light paper. Limit the use of fancy typefaces, underlining, and other visual tricks. Use appropriate images to humanize materials and show adults how to do recommended action steps.

One of the best-kept secrets about plain language is that it takes practice to write simply and clearly. One key to success is planning what you want to write (or say) before you sit in front of the computer and start writing. You must know both your

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audience and your purpose well. Ask yourself over and over: Who will use this? What do they need to know to take the action(s) I am recommending? How can I suggest this in a way that is appropriate and compelling to the intended audience?

Showing what you have written to prospective users before you make many copies of it is also important. Be brave and ask for feedback and ways to make your material more clear. You will be surprised at what your trial readers do not understand and the great ideas they will offer to improve your document.

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▶ A Call to Action Will using plain language and other clear health communication techniques ensure that older adults can read, understand, and use the information? Will it help to address our major national concerns with patient safety, quality, and costs of care? There is no one solution to the complex problem of communicating effectively with diverse patients and audiences. We do know from research that well-planned and simply written information, as well as the use of teach back, can make a big difference in the level of understanding.

But, simply knowing what to do is not the same thing as doing it, and many factors can interfere with adults taking actions beneficial to their health. Understanding, however, is almost always the first step, whether in getting preventive vaccines, managing a chronic condition, preparing for a medical test, or following discharge and medication instructions.

Healthcare providers have a challenge and an opportunity to enrich their practices and the lives of their clients or patients as well as their families. Healthcare professionals must take the lead in learning effective verbal and written communication techniques. Good health and health care are too complex, too important, and too costly for us to continue bumbling along with materials that are too hard to read and verbal teaching that patients cannot effectively remember and use. Online resources and training programs are listed in the references. You may also attend workshops to learn more.

Healthcare organizations and systems also have a role— building health literate organizations. This means allocating resources to develop policy, train providers and staff, develop or purchase plain language written materials, and evaluate ongoing efforts to shift cultural norms. This effort, wherever it takes place—in a hospital, pharmacy, primary care office, behavioral health or specialty clinic—supports patient or client engagement and a culture of safe, patient- or client-centered care.

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Communication excellence is not only the right thing to do. It is essential to thrive in this new era of “pay for performance” and “bundled care.” As payment models continue to shift to reimbursing for episodes and results of care and measuring them more accurately, effective communication will play an increasingly important role. Only if patients engage in their care as partners with their providers, and understand what to do and how to do it, will we be able to bend the cost curve. Only healthcare delivery systems and healthcare professionals that adapt will survive and thrive.

There are millions of “Cecilias”—millions of older adults and their families and caregivers managing health conditions who will benefit from the extra care we take with our communications. And the healthcare systems in which we serve will benefit as well.

CASE STUDIES

Case 1: Arnold, a 62-year-old plumber, had been experiencing a series of symptoms, including increased thirst, frequent urination, and unusual weight loss. After some prodding from his wife, he went to see his family physician, Dr. Lopez. The doctor gave him a physical exam, ordered some blood work, and scheduled a follow- up appointment. On the return visit, Arnold sat down with the doctor to discuss his diagnosis. Dr. Lopez explained, “You have noninsulin-dependent diabetes or type 2 diabetes, which is a chronic condition that affects the way your body metabolizes glucose. Insulin is a pancreatic hormone that transforms dietary glucose into energy for your cells. If you had type 1 diabetes, it would mean that your pancreas produces little or no insulin. However, with type 2 diabetes, your pancreas produces sufficient amounts of insulin, but your cells are no longer utilizing it efficiently, which causes fluctuation in your blood glucose levels. To treat your condition, you’ll need to start eating a healthy diet, start exercising regularly, and monitor your blood sugar. I’m writing you a prescription for Metformin and a glucose monitor.” After finishing his explanation, Dr. Lopez asked Arnold if he had any questions. Slightly stunned, Arnold just shook his head and

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replied, “No.” Dr. Lopez also told him that his practice has a diabetes fact sheet posted on their website and suggested that he look it up and read it. Arnold thanked him and left. He went to the pharmacy to have his prescription filled and also bought a bottle of glucosamine, a dietary supplement used by some people to treat joint pain. When his wife asked what the glucosamine was for, Arnold said, “I think I’m supposed to be taking it. The doctor mentioned it a few times.”

1. What are some reasons why Arnold likely did not understand what Dr. Lopez told him?

2. What could Dr. Lopez have done to better present the information in a way that Arnold would understand?

3. Was it a good idea for Dr. Lopez to refer Arnold to his practice’s website for more information? Why or why not?

Case 2: Dr. Falk and Dr. Keller operate a family medical practice. One afternoon, as they ate lunch in the break room, they discussed an article about health literacy that Dr. Falk was reading in a national news magazine. “There’s been a growing trend toward healthcare organizations becoming health literate,” Dr. Keller said. “The statistics are pretty surprising,” Dr. Falk replied. “More than half of the people surveyed had only basic or below basic health literacy skills.” “Do you think it’s something we should look into at our practice?” Dr. Keller asked. “I think we should,” Dr. Falk replied. While they were talking, Amanda, the office manager, and Jean, one of the nurses, came into the break room to get some coffee. They overheard what the doctors were discussing, and Amanda asked Jean, “What does health literacy mean?” Jean answered, “I think it refers to understanding your own health and knowing what you need to do to stay healthy.”

1. Is Jean’s explanation of health literacy accurate? Why or why not?

2. Do you agree that Dr. Falk and Dr. Keller should address the issue of health literacy in their practice? Why or why not?

3. What are some resources that Dr. Falk and Dr. Keller can use to improve the level of health

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literacy at their practice?

Test Your Knowledge

Review Questions

1. Which statement most accurately describes the contemporary use of the term health literacy?

a. An individual’s literacy and numeracy skills used in a healthcare context

b. The communication methods and approaches used in healthcare interactions and systems

c. Confusion resulting from hard to understand medical terms

d. Both a and b combined

2. Which statement about older adults’ literacy skills is true?

a. Those over 65 scored the highest on the 2003 National Assessment of Adult Literacy.

b. Literacy skills tend to increase with age because of practice.

c. Limited literacy skills are associated with greater health risks.

d. Literacy skills are not related to hospital admission rates.

3. Which of these statements is true? a. Government agencies encourage attention to health

literacy but lack support from health professions and health organizations.

b. Various health professions and organizations encourage attention to health literacy but lack support from government agencies and payment systems.

c. Neither government agencies nor health professions

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organizations play a role in communication between patients and providers.

d. Both government agencies and health professions organizations encourage attention to health literacy and back it up with policies and standards.

4. Which of the following statements about written plain language is true?

a. Plain language means simply using familiar words and does not include paying attention to any elements beyond words.

b. Plain language dumbs down complex information and may not be 100% accurate.

c. Plain language is conversational, meaning that it’s simple and clear.

d. Plain language insults patients because it can be so boring.

5. ___________ have been shown to increase the likelihood that adults will use vital healthcare information.

a. Detailed written materials b. TV shows c. Medically based instructions d. Teach back techniques

Learning Activities

1. View the American College of Physicians Foundation video Health Literacy (www.youtube.com/watch?v =ImnlptxIMXs&feature=related) and discuss it with your fellow students. This video is a great kick off to start building an understanding of how patients struggle in medical situations. However, it is important to remember that the video does not address the barriers organizations present for patients.

2. Download the handouts from the Ask Me Three program (www.npsf.org/?page=askme3). Discuss how the handouts might promote patient-provider interaction.

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3. Interview one or more older adults and ask them about their communication with healthcare providers. What helps them understand how to care for themselves? What are the challenges? What are they not able to understand both in written information they are given and in the face-to-face communications with their providers?

4. Complete a health literacy audit of a local healthcare facility, preferably a hospital. Use the audit tool designed by Dr. Rima Rudd at Harvard School of Public Health, Assessing the Health Literacy Environment (www.hsph.harvard.edu/healthliteracy/environments/). Or, choose selected elements from the tool and create a mini audit tool that can be completed more easily. The Health Literacy Universal Precautions Toolkit is located on the same website. It includes audit tools, as well.

5. Use the checklists in one of the audit tools (noted earlier) to evaluate health and medical materials for plain language. Or, use the CDC tool, the Clear Communication Index (www.cdc.gov/ccindex/tool/index.html) or the AHRQ tool, the PEMAT (www.ahrq.gov/professionals/prevention-chronic- care/improve/self-mgmt/pemat/index.html). How well do the materials meet plain language guidelines?

6. Read and evaluate the executive summary from one or more of the reports issued by the Health Literacy Roundtable during the past 15 years (www.nap.edu/initiative/roundtable-on-health-literacy).

7. Look for research articles that link health literacy and your health occupation. A search in major databases will reveal articles published in most health fields, including nursing, physical and occupational therapy, social work, nutrition, pharmacy, dentistry, and medicine.

8. Complete the online training program offered by the CDC (www.cdc.gov/healthliteracy/, scroll down to the section on Training).

9. Try writing a one-page, easy-to-read information piece related to a specific issue in your field. If you have a clinical practicum and access to patients, ask some of them for suggestions of what to include and for feedback about

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your first draft. Practice using your piece for patient teaching along with the teach-back method.

10. Learn more about the Cultural and Linguistic Access Standards (CLAS) and the role of plain language (www.thinkculturalhealth.hhs.gov/assets/pdfs/EnhancedNationalCLASStandards.pdf

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CHAPTER 6 Policy Issues for Older Adults Laney Bruner Canhoto, PhD, MSW, MPH

CHAPTER OUTLINE

INTRODUCTION

POLICY OVERVIEW The Ever-Evolving Nature of Policy Historical Perspectives on Elder Policy

POLICY ISSUES Income Policies

Social Security Supplemental Security Income

Healthcare Policies Medicare Medicaid

Older Adults and Disabilities Policies The Aging Network Americans with Disabilities Act

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Long-Term Services and Supports Medicare Medicaid Medicaid HCBS Waivers and Special Programs The Aging Network Private Funding Long-Term Care Insurance

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. List the eligibility criteria for Social Security, Medicare, and Medicaid.

2. Describe what is provided through Social Security. 3. Understand how Social Security, Medicare, and

Medicaid are accessed. 4. Explain the differences among Social Security and

Supplemental Security Income. 5. Describe what is covered under Medicare and Medicaid. 6. Compare and contrast Medicare and Medicaid. 7. Explain the programs available through the Aging

Network and their structures. 8. Describe how the Americans with Disabilities Act

impacts health care. 9. Explain how long-term services and supports are funded

in the United States.

KEY TERMS

Aging Network

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Americans with Disabilities Act Area agencies on aging Long-term care insurance Long-term services and supports Medicaid Medicaid waivers Medicare Medigap Older Americans Act Social Security Act State units on aging Supplemental Security Income

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▶ Introduction Public policy issues affect everyone at all stages of life and in many different ways. Education policy requires certain behaviors of children and their parents. Transportation policy affects how people travel, whether on the interstate system that President Eisenhower began, on public transportation, or in environmentally friendly “green” vehicles. For older adults, specific policies have a real impact on their lives, including finances (Social Security) and health care (Medicare and Medicaid). Healthcare professionals need to know what these policies are, whom they cover, what services and benefits they provide, and how to access them to be able to fully help older clients and patients.

The specific policies covered in this chapter include income policies (Social Security and Supplemental Security Income, two distinct and separate policies) and healthcare policies (Medicare and Medicaid, also two distinct and separate policies). The specific federal policy for this population, the Older Americans Act (OAA), is discussed as an important foundation for services for older adults. A civil rights policy, the Americans with Disabilities Act (ADA), is also reviewed for its impact on older adults who may have a disability.

This chapter is organized into two main sections. In the first section, a high-level overview of the ever-evolving nature of policy and a historical perspective on elder policy is presented, with some emphasis on healthcare reform legislation under presidents Obama and Trump, to the extent possible in 2018 given the evolving situation. In the second section, “Policy Issues”—specific policies related to older adults, organized by topic—are described, including an overview, a brief history, a description of eligibility criteria, an explanation of benefits, and instructions on how to access the policy or program.

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▶ Policy Overview The Ever-Evolving Nature of Policy Just as science and medical care have evolved over the years, so too have public policies. The issues described in this chapter are current as of early 2018; however, they are ever-changing. Prime examples of this are the Patient Protection and Affordable Care Act (ACA) of 2010 (P.L. 111–148), President Obama's healthcare reform legislation and the current President Trump's efforts to repeal and replace certain features of the ACA. In 2018, this has remained a fluid and evolving situation. The policies discussed in this chapter are current at this time; however, it must be noted that as new healthcare legislation is passed, at least some of the provisions will affect older adults. Currently, the late 2017 repeal of the ACA's individual mandate no longer requires most individuals living in the United States to have health insurance through employer-based insurance, health insurance exchanges, or the optional expansion of state programs, including Medicaid (Henry J. Kaiser Family Foundation, 2013, 2018). Therefore, it appears that the current legislature is pushing to significantly reduce the strength of the ACA mandates, and limit some of the financial incentives for state to expand Medicaid, which may remain optional. For example, his executive order of October 2017 (Executive Order 13813) changed the way ACA is being implemented.

There are some specific provisions in ACA that affect older adults. These provisions include drug rebates and discounts for Medicare beneficiaries and the eventual closing of the Part D “doughnut hole” (a prescription drug coverage gap in Medicare), the creation of a center to provide funds to states to implement programs for individuals who are dually eligible for Medicare and Medicaid, and the expansion of home- and community-based services (HCBS) benefits for Medicaid populations. Under Medicare, older adults receive an annual wellness visit and additional preventive screenings like mammograms and colonoscopies with no deductibles or

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copayments. With the ACA, Medicare and Medicaid fraud and abuse protections were expanded. The ACA seeks to enhance quality of care for all individuals, including older adults, through the implementation and evaluation of better coordination strategies and programs (like the accountable care organizations and dually eligible [Medicare and Medicaid] initiatives; Medicare.gov, n.d.). These benefits for older adults remain, but potential reforms under President Trump may impact these and other benefits in the years to come.

As another example of the evolution of policy, if this chapter had been written right after the ACA was passed, one of the major benefits that would have been provided to the growing numbers of older adults was the Community Living Assistance Services and Supports (CLASS) provision. The CLASS Act was to be a national voluntary HCBS insurance program designed to provide a cash benefit, after an initial 5-year vesting period, to individuals who needed nonmedical services to remain in the community. The program was to be funded through payroll deductions. However, this provision was determined to be unsustainable through the proposed funding mechanism and was repealed (National Law Review, 2011). Additionally, if the Supreme Court decision (which upheld much of the ACA) had struck down the entire law, this chapter might be focused less on Medicaid and more on private pay options for older adults.

Historical Perspectives on Elder Policy Policies and programs for older adults in the United States are a relatively recent development. In the past, there were relatively few older adults and the community—typically families—took care of aging individuals. Older adults without family were often relegated to poorhouses, subsisting on meager charity based on poor laws (Gelfand, 2006).

With the passage of the Social Security Act in 1935, there was a dawning awareness of the need for policies and programs to assist individuals as they grew older (FIGURE 6-1). Much of the early policy focus for older adults was on finances and retirement, with amendments to Social Security expanding eligibility and eliminating limits in the 1950s and 1960s. Social Security has had a tremendous impact on the poverty rate of

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older adults, helping about 15 million older adults out of poverty in 2015 (Romig & Sherman, 2016).

FIGURE 6-1 A poster from 1935 promoting Social Security benefits and detailing how to apply.

Library of Congress, Prints & Photographs Division, [LC-DIG-ppmsca-07216]

During the 1960s, social service programs and funds, precursors to the current Aging Network of service providers, were also allocated for older adults. In 1961, the first White House Conference on Aging was held, followed by the establishment of the Commission on Aging in 1962. The Aging Network really took shape with the OAA of 1965, which created the Federal Administration on Aging (AoA) and state units on aging (Administration on Community Living, n.d.).

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In fact, 1965 was an enormous year for both elder policy and healthcare policy affecting older adults. Medicare was established, creating federal healthcare insurance for older adults. Medicaid was also enacted, creating healthcare assistance programs at the state level for individuals with low income or resources (including older adults and people with disabilities).

In 1990, the ADA was enacted, calling for the integration of people with disabilities (including older adults) into employment, services, and health care. Following the “independent living” philosophy, disability advocates who fought for the ADA are now influencing how services are provided to older adults (Gibson, 2003). All these policies and programs exist today, though with amendments and specific changes dictated by current circumstances, politics, and demographics.

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▶ Policy Issues The policies discussed in this chapter are divided into several topic areas: Income, Health Care, Older Adults and Disabilities, and Long-Term Services and Supports. Income policies relate to providing for some level of economic security and financial ability for individuals who are aging and may no longer be working or may have a disability. Healthcare policies provide a level of health care either through insurance or a safety net system. The policy area of Older Adults and Disabilities include policies that provide services, supports, or civil right protections for people who are aging or who have disabilities (or both). Finally the topic area of Long-Term Services and Supports is discussed, which includes elements and policy implications from all of the above topic areas.

Income Policies Social Security

Social Security is the Old-Age, Survivors, and Disability Insurance (OASDI) program. It is funded through taxes on workers and employers. These taxes are paid into the Federal Old-Age and Survivors Insurance Trust Fund (better known as the Social Security Trust Fund). The current taxes pay for current benefits. Workers today are funding Social Security benefits for today's beneficiaries.

Much of the debate on Social Security revolves around whether Social Security will be able to pay out benefits to future generations of beneficiaries. This debate involves demographic and actuarial projections, which are uncertain. For example, life expectancy will play into the exact prediction of when the trust fund will be exhausted (i.e., when expenses exceed the total trust fund income). The number of individuals in the workforce will be another factor. Even as baby boomers are retiring in greater numbers, if the relative good health they enjoy compared to past generations induces some baby boomers to delay

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retirement, then these individuals will continue to pay into the trust fund rather than get “paid” from the trust fund. History

(Social Security Administration, 2005) President Franklin Roosevelt signed the Social Security Act in 1935 (FIGURE 6- 2); over the years, the act has been amended to evolve with the social, economic, and political tenor of the time. Social Security, at the federal level, was enacted to decrease the poverty rate among older adults, which was high during the Great Depression of the 1930s.

FIGURE 6-2 President Franklin Roosevelt signed the Social Security Act in 1935.

Library of Congress, Prints & Photographs Division, photograph by Harris & Ewing, [LG-

DIG-hec-47244]

When it was enacted, Social Security covered all workers in commerce and industry (except for railroads). These categories excluded farm workers, domestic workers, and teachers, categories that were composed predominantly of women and minorities. The exclusions have been eliminated over time through amendments to the Social Security Act.

In addition, amendments in 1939 added spouses and children under the age of 18 years for dependent benefits, in

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cases where the worker was still alive, and survivor benefits, when a worker experienced a premature death. Amendments in 1950 created cost of living allowances (COLAs), which increased Social Security amounts (which until then had been a static amount) by a certain percent increase. Further amendments allowed for additional COLAs, until legislation in 1972 created automatic COLAs.

In the 1980s, there was a concern about the financing of Social Security. This concern led to the taxation of Social Security benefits and the slow increase in the retirement age from 65 to 67 in the 2000s. Other amendments have allowed older adults to remain in the workforce and still receive some Social Security benefits and, most recently, have excluded prisoners from receiving Social Security benefits. Whom It Covers

(Social Security Administration, 2017b) Although this is a chapter on policy issues for older adults, Social Security is not just a policy solution for older adults or for retired workers. Non-elder beneficiaries of Social Security include workers with disabilities and dependents and survivors of workers who have participated in Social Security. Social Security covers workers who have earned enough credits through work. Typically, for people born in 1929 or later, they will need to have worked for at least 10 years to earn the 40 work credits needed to qualify for Social Security. Workers usually earn four credits for each year of work.

Individual workers can begin collecting Social Security benefits at age 62 (although workers with disabilities and dependents and survivors of workers may begin receiving Social Security benefits earlier). The benefit is greater for individual workers who wait until their full retirement age, which is based on their birth year. The benefit is reduced by 0.5% for each month Social Security benefits are begun before the worker reaches full retirement age. Almost 60% of new Social Security beneficiaries elect to start benefits before reaching full retirement age (Federal Interagency Forum on Aging-Related Statistics, 2016). See TABLE 6-1 to determine the full retirement age.

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TABLE 6-1 Full Retirement Age

Year of Birth Full Retirement Age

1943–1954 66

1955 66 and 2 months

1956 66 and 4 months

1957 66 and 6 months

1958 66 and 8 months

1959 66 and 10 months

1960 or later 67

Reproduced from Social Security Administration. Understanding the Benefits (SSA

Publication No. 05-10024). Washington, DC: U.S. Government Printing Office, 2012: 9.

Workers need not stop working completely to receive Social Security; however, depending on how old the worker is and how much he or she makes, the monthly Social Security benefit amount may be reduced until the worker reaches the full retirement age. Workers can also delay the start of Social Security benefits until age 70, which will increase their benefits by a certain percentage, depending on year of birth (8% for people born in 1943 or later; Social Security Administration, 2017a).

Social Security also covers spouses and, in certain cases, former spouses of workers. Spouses may collect Social Security benefits based on their husband's or wife's work history or on their own, depending on which amount is higher. Former spouses may collect if they were married to the worker for 10 or more years and have been divorced for at least 2 years (if the worker is not receiving benefits) and not remarried. Survivors of workers may collect Social Security benefits if they are 60 years or older or 50 years or older with a disability; children and parents of deceased workers may also collect benefits, under certain conditions. Benefits

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(Federal Interagency Forum on Aging-Related Statistics, 2016) Social Security was originally developed as a floor or foundation for workers' retirement income and not meant to be the only source of income (FIGURE 6-3). Currently, however, statistics show that Social Security provides the largest part of older adults' income: in 2014, 49% of family income for individuals 65 or older was from Social Security, with earnings (24%), pensions (16%), and asset income (6%) rounding out the other main sources of income. For older adults with the lowest income, Social Security accounts for about 67% of their income. Benefits for Social Security depend on a worker's earnings, retirement age, working status, and relationship to the worker (in the case of spouses, dependents, and survivors).

FIGURE 6-3 Social Security benefits were originally intended to be a small portion of retirement income, not the largest portion.

Given the role of pensions in older adults' income, a brief note on pensions is useful. Pension or retirement income typically comes in one of two forms: defined benefit or defined

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contribution programs. Initially, companies offered defined benefit programs. These pension programs were created such that individuals worked for a certain amount of time and then were guaranteed a specific amount (benefit) upon retirement as a lifetime annuity. Companies began moving away from those types of programs and now usually offer defined contribution programs like 401(k) accounts, where employees and employers set aside a specific amount into the program (defined contribution), which together with investment returns then determines the amount of the benefit upon retirement. As noted, regular income of any pension type provides less than one-fifth of the income for individuals 65 years or older (Federal Interagency Forum on Aging-Related Statistics, 2016). This, however, may not include income that is taken from other retirement accounts (like individual retirement accounts [IRAs]) because these amounts are often taken irregularly. How to Access

(Social Security Admin istration, 2017b) Workers who are retiring should apply for Social Security benefits 3 months before they want to begin receiving benefits. Applications can be made online (www.socialsecurity.gov /applyforbenefits), on the telephone (1-800-772-1213, TTY 1-800-325-0778), or in person by making an appointment at the local Social Security office. Specific documentation is needed for the application process, and staff at the Social Security office can help to obtain the necessary documentation in the proper format.

Benefits are delivered electronically, either through direct deposit to a bank account or through a prepaid debit card program. Supplemental Security Income

The Social Security Administration also operates the Supplemental Security Income (SSI) program (Social Security Administration, 2017c). The SSI program provides a monthly monetary payment for eligible individuals with little or no income and low resources. While the Social Security Administration operates SSI, Social Security and SSI are funded through different mechanisms. Whereas Social Security is funded through payroll taxes and eligibility is based on whether

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an individual or a member of his or her family paid into the system, SSI is financed through the U.S. Treasury's general funds. Whom It Covers

Eligibility criteria include individuals who are 65 years or older, individuals who are legally blind, or individuals who are determined to be disabled. Many of these individuals may also receive Social Security benefits, as noted earlier, but an individual does not have to be receiving Social Security to receive SSI. Certain individuals are not allowed SSI benefits; these persons include fugitives from the law, individuals in prison or jail, individuals in publicly funded institutions, and individuals who only qualify for SSI because they transferred or gave away resources. Benefits

The amount of the SSI benefit will be determined by an individual's income, resources, and living arrangement. For each of these categories, SSI has specific rules. SSI benefits also vary by who is paying for their room, board, and utilities. Often, individuals who receive SSI are eligible for Medicaid, although (as shown later in this chapter) each state has different eligibility requirements for Medicaid. Also, most states supplement SSI benefits with an additional monetary payment each month. Furthermore, states can choose to have the federal government administer the entire benefit amount of federal SSI plus state supplement, have the federal government administer the entire benefit amount for some categories of recipients but not others (dual administration states), or administer the state supplement on its own. This arrangement matters to individuals when they need to contact someone about their benefit. How to Access

Applications can be made on the telephone (1-800-772-1213, TTY 1-800-325-0778) or in person by making an appointment at the local Social Security office. No online SSI applications are available. Benefits are paid electronically, through direct deposit, a debit card program, or an electronic transfer account.

Healthcare Policies

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Medicare

Medicare is a social insurance program for older adults and certain other people. Social insurance is a government- sponsored program for which participation is generally mandatory for a defined population. A social insurance program's benefits and eligibility are defined by law and the program is funded through taxes from or on behalf of participants (Committee on Social Insurance of the American Academy of Actuaries, 1998). Medicare and Social Security are both examples of social insurance. History

(Henry J. Kaiser Family Foundation, 2015) Medicare was created as the insurance program for older adults in 1965 when President Lyndon B. Johnson signed H.R. 6675 (PL 89-97). Much of the early years of Medicare, through the 1970s, saw the expansion of eligible groups and covered services. For example, the Social Security Amendments of 1972 expanded Medicare to allow coverage for individuals with end-stage renal disease. Also in 1972, covered services were expanded to include some chiropractic and rehabilitation therapy services.

In 1981, however, Congress became more concerned about slowing Medicare's growth and so put in place a variety of laws to limit Medicare spending. Laws were enacted that increased deductibles, instituted different payment methodologies for hospitals and physician services, and limited benefits such as home health and therapy services. For example, the Omnibus Budget Reconciliation Acts (OBRAs) of 1987, 1989, and 1993 modified payments to Medicare providers and changed physician billing. In 1988, the Medicare Catastrophic Coverage Act expanded coverage with a prescription drug benefit and caps on out-of-pocket expenses, and increased hospital and nursing facility benefits. However, by 1989, most of that act had been repealed. The Balanced Budget Act of 1997 continued the trend of implementing new payment methods for Medicare providers, including home health services and outpatient rehabilitation services. In 2003, with the Medicare Modernization Act, Medicare coverage was expanded to prescription drugs.

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Current discussion revolves around the sustainability of Medicare and how it should be funded. Medicare is financed through payroll taxes kept in a trust fund, general revenues, premiums, and state payments (for certain benefits). Specifically, what people pay into the system is paying for the Medicare benefits of eligible individuals now. Debate centers on how long the Part A Hospital Insurance trust fund will remain solvent (insolvency will occur when the trust fund runs out of money to pay for Medicare benefits), with actuaries looking over a 70-year time horizon. The ACA enacted several provisions to slow Medicare spending and ensure the solvency of the trust fund while improving benefits and the quality of care for beneficiaries. At present, because of healthcare reforms, the trust fund is expected to remain solvent at 100% through 2029; after that date, the trust fund is predicted to remain between 81% and 88% solvent through 2091 (Van De Water, 2017). Whom It Covers

(Henry J. Kaiser Family Foundation, 2015) Medicare covers people who are 65 years and older, certain people under 65 years with long-term disabilities, and adults with end-stage renal disease requiring dialysis or transplant. The inclusion of this specific disease category occurred in 1972 and was driven by Shep Glazer, who appeared before the House Ways and Means Committee while receiving dialysis. Since 2000, persons with the diagnosis of another specific disease, amyotrophic lateral sclerosis (ALS), are also allowed to enroll in Medicare upon diagnosis instead of waiting the 24 months as other adults with disabilities must do after a qualifying disability/disease. Benefits

(U.S. Department of Health and Human Services, 2014) Medicare is composed of several different benefits or “parts,” which provide specific help in covering certain healthcare services. Part A is also known as Hospital Insurance, and it covers inpatient hospital care, limited skilled nursing facility care (nursing homes), hospice, and home health care. Part B, also known as Medical Insurance, covers doctor/provider services, outpatient care, home health care, durable medical equipment, and some types of preventative services (Centers for

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Medicare and Medicaid Services, n.d.). Part C is Medicare Advantage plans, which include Part A and B services and are run by private insurance companies. Part D is the Medicare Prescription Drug Coverage, and is also run by private insurance companies (Henry J. Kaiser Family Foundation, 2017a).

Part A is financed through payroll taxes, paid by both employers and employees, and kept in the Hospital Insurance trust fund. The payroll tax was 1.45% for employees and employers (total 2.9%) for all but higher income taxpayers (Cubanski & Neuman, 2017). Part A covers a semiprivate hospital room (unless a private room is medically necessary), meals, nursing services, and other medically necessary supplies and services. Part A accounted for 29% of Medicare spending in 2016 (The Boards of Trustees, 2017). People with Medicare Part A are covered if there is an order from a doctor that the illness or injury requires inpatient hospital care, if the type of care can only be given in a hospital, if the hospital accepts Medicare, and if the hospital's utilization review process/entity approves of the hospital stay. Although Part A pays for the hospital stay, deductibles, coinsurance, and lifetime reserve days determine the amount that each Medicare hospital patient pays during a stay.

Part A also covers some skilled nursing facility care. Specifically, for up to 100 days, Medicare covers skilled nursing care, medications, supplies and equipment, medical social services, dietary counseling, physical therapy, occupational therapy, and speech-language pathology services—all as necessary to meet the patient's health/medical goals. To be covered, the Medicare recipient must have Part A with days left in the benefit period, a qualifying hospital stay, and a medical need for daily skilled care. A benefit period is how Medicare measures hospital and skilled nursing facility care. It begins on the first day a beneficiary received inpatient hospital or skilled nursing facility care and ends when the beneficiary has not had hospital or skilled nursing facility care for 60 days. There is no limit to the number of benefit periods. Similar to hospital stays, the person will be charged based on the number of days in a skilled facility.

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Part A covers home health services, including intermittent skilled nursing care, physical and occupational therapy, and speech-language pathology services. There are certain limitations to coverage for these services. To be covered, skilled nursing services must be only intermittent. Therapy services must be reasonable in amount and frequency and specific, safe, and effective to treat the condition. In addition, the condition must be expected to improve with such treatment or else only a skilled therapist can safely create a maintenance program. Individuals receiving this benefit must have a doctor's order and the doctor must certify that the person is homebound (meaning they should not leave their house in their condition, they cannot leave home without help, and they cannot leave home without considerable and taxing effort). The benefit covers all costs for healthcare services—individuals must pay 20% of any durable medical equipment.

Part B or Medical Insurance covers medically necessary services (such as doctor visits) and supplies and services to prevent illness. Unlike Part A, Part B is funded through a premium system and general revenues. Part B accounted for 28% of Medicare spending in 2016 (The Boards of Trustees, 2017).

Part B benefits include clinical research, ambulance services, durable medical equipment, mental health services, therapy services, and second opinions. Part B also provides an annual wellness visit, known as the “Welcome to Medicare” preventive visit, during the first 12 months of Part B coverage (under ACA provisions). Medicare beneficiaries who have had Part B coverage for longer than 12 months receive yearly wellness visits. Additionally, tobacco cessation counseling and screenings are covered under Medicare Part B. Some services are never covered by Medicare Part A or B, including routine dental and vision care, hearing aid fitting, long-term nonskilled (custodial) nursing care, dentures, and regular foot care.

Part C (Medicare Advantage) consists of plans from private insurance companies that cover Part A and Part B benefits for individuals enrolled in the plans. Monthly premiums vary by plan. Part C accounted for 29% of Medicare spending in 2017 (The Boards of Trustees, 2017), with over 19 million

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individuals enrolled in Medicare Advantage plans (Henry J. Kaiser Family Foundation, 2017b).

All Part C plans must cover emergency care as well as all the services covered by Part A and Part B or “original Medicare.” The only exception is hospice, which is covered by basic Medicare even if there is a Part C/Medicare Advantage plan in place. Part C plans do not have to cover any service that is not medically necessary; however, these plans may offer benefits that are not covered under original Medicare such as vision, hearing, or dental care.

Part D covers prescription drugs, and each private insurance plan has different lists of drugs that are covered. Similar to Part C/Medicare Advantage, Part D is funded through premiums that vary by plan. Part D accounted for 15% of Medicare spending in 2017 (The Boards of Trustees, 2017). For some Part D plans, the lists (or formularies) are organized into tiers, with different tiers costing a beneficiary a different amount. Older adults and their healthcare providers should determine the formulary as well as the rules and limits for their specific Part D coverage (such as prior authorization requirements, quantity limits, and step therapy, in which a lower cost drug must be trialed before a higher cost medication is approved).

Most Part D plans have a coverage gap called “the doughnut hole.” This gap occurs when a beneficiary and his or her Part D plan have spent a certain amount of money on prescriptions. After that amount is reached, the beneficiary must pay for all prescriptions until a yearly limit on out-of-pocket costs is reached, and then the Part D plan again begins to help pay the prescription's cost. The ACA provides some relief for Medicare beneficiaries in the doughnut hole. First, the ACA closes the coverage gap by 2020. Second, if an individual reaches the coverage gap, there is a discount on covered brand name drugs (although the full amount is counted toward the yearly limit) until the limit is reached. Third, beneficiaries in the coverage gap receive a discount on generic prescriptions (Medicare.gov, n.d.).

Many older adults purchase additional coverage to supplement their original Medicare (Parts A and B). This

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coverage is known as Medigap insurance policy because it fills in certain gaps in the original Medicare (U.S. Department of Health and Human Services, 2017). These gaps are costs that original Medicare does not pay, including coinsurances, deductibles, and copayments. Other gaps in the original Medicare such as services not covered (e.g., long-term nonskilled care, vision, etc.) are typically not covered with a Medigap policy. Medigap policies require premiums to be paid by the individual, which vary by plan. Medigap policies in the majority of states are standardized and identified by a letter, A– N, signifying exactly what the plan covers. (Exceptions to this standardization are in Massachusetts, Minnesota, and Wisconsin, which organize Medigap plans in a different way.)

For individuals with low incomes and little to no resources, states provide several programs to assist with paying for premiums. These programs include the Qualified Medicare Beneficiary (QMB) program, Specified Low-Income Medicare Beneficiary (SLMB) program, Qualifying Individual (QI) program, and Qualified Disabled and Working Individuals (QDWI) program. Each program has certain income and resource limits and pays for certain types of premiums and/or deductibles. Any individual who qualifies for one of these programs also qualifies for Extra Help, a Medicare program designed to assist with Medicare prescription drug coverage. How to Access

(U.S. Department of Health and Human Services, 2014) For individuals already receiving Social Security, Social Security will contact them about 3 months before they turn 65 years to make decisions about their Medicare coverage (discussed later in this chapter). A person can receive Medicare at the age of 65 years, even if he or she delays the receipt of Social Security retirement benefits. To apply for Medicare for older adults, a person needs to be 64 years and 9 months old (FIGURE 6-4). Individuals who have been determined to be disabled and are receiving Social Security disability benefits are eligible for Medicare 24 months after the disability determination is made. About 3 months before the 2-year period is completed, Social Security will contact them. As noted, ALS is a special case.

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Individuals with ALS may begin receiving Medicare upon the diagnosis, without waiting.

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FIGURE 6-4 Medicare Donut Hole. Reproduced from Boomer Benefits. www.boomerbenefits.com

There are several decisions that need to be made. Individuals will need to decide if they want to receive original Medicare (Parts A and B) or receive their coverage through a Part C Medicare Advantage Plan (Parts A, B, and usually D). Then, older adults will have to decide if they need to include prescription drug coverage (Part D). If they receive the original Medicare, individuals need to determine if they want a Medicare supplemental insurance or Medigap policy (U.S. Department of Health and Human Services, 2017). Individuals with a Medicare Advantage Plan are not eligible for a Medigap policy. The easiest time to purchase a Medigap policy is during the Medigap open enrollment period, which is the 6-month period that begins when an elder is 65 years or older and enrolled in Part B. Medicare beneficiaries under the age of 65 years may not be able to purchase a Medigap policy, depending on the state.

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For the Medicare Savings Programs (see QMB, SLMB, QI, and QDWI programs discussed earlier), individuals with low income and low resources can contact their state Medicaid office for assistance with the application process and to determine eligibility. Medicaid

Medicaid is a public assistance program that provides health care to individuals of all ages with low incomes, including individuals with disabilities. Medicaid is a federal and state partnership, whereas Medicare is the responsibility of the federal government. Medicaid is a voluntary program for each state, although all 50 states currently participate. To participate, a state must agree to cover certain services (discussed further in this section) and follow Medicaid regulations. History

(Paradise, Lyons, & Rowland, 2015) Medicaid was enacted at the same time as Medicare, in 1965. It is Title XIX of the Social Security Act. As a voluntary federal–state program, states choose whether or not to participate. It was only in 1982 that all states chose Medicaid, when Arizona created its Arizona Health Care Cost Containment System. In the years since Medicaid was created, coverage and eligibility requirements and options have expanded. Other changes have been enacted to allow states to better control costs (such as the Medicaid Drug Rebate Program created by the Omnibus Reconciliation Act of 1990) and to allow additional flexibility in meeting the needs of beneficiaries (such as Medicaid waivers). Still, other changes have made it easier for certain Medicaid beneficiaries with disabilities to work without losing all Medicare and Medicaid benefits (Ticket to Work and Work Incentives Improvement Act of 1999).

The federal government “matches” a percentage of the costs of the Medicaid program in each state. This percentage is known as the Federal Medical Assistance Percentage (FMAP). The FMAP ranges from 50% (for wealthier states) up to 75% (for poorer states). FMAPs are determined by financial criteria for each state and are published for each federal fiscal year (U.S. Department of Health and Human Services, 2015a).

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Whom It Covers

(Henry J. Kaiser Family Foundation, 2017c) Medicaid's eligibility requirements differ by state. There are mandatory eligibility groups that include children, elderly adults, parents/caretaker relatives of children up to 18 years old, and people with disabilities who meet specified minimum income levels. The ACA offers states the opportunity to expand eligibility to include all individuals meeting 138% of the federal poverty level. Some states are more expansive in their eligibility criteria than others, because Medicaid law allows for flexibility in determining which groups are covered. In 2014, approximately 80 million individuals were covered by Medicaid, with older adults accounting for 9% of the Medicaid population (Henry J. Kaiser Family Foundation, 2017c).

Each state has specific income levels and resource amounts for qualification for Medicaid. There are limits to how much an individual may own and also limits to how much an individual can transfer to another person in the previous 5 years if he or she is trying to qualify for Medicaid (the 5-year look back period for transfer of assets). These limits are in place to ensure that Medicaid benefits are given to individuals with lower incomes and few resources, not to individuals who are trying to appear to have lower incomes and few resources but in fact have access to such funds. Individuals can, however, spend down their resources and income through paying for health care to qualify for Medicaid. Spouses of individuals qualifying for Medicaid have protections, known as Spousal Impoverishment standards, to allow them to keep income, resources, and home equity. Benefits

(Henry J. Kaiser Family Foundation, 2017c) Medicaid programs in each participating state must provide the following medically necessary services (medical necessity is determined by each state's requirements):

Physician services Inpatient/outpatient hospital services Laboratory and X-ray services Early and periodic screening, diagnostic, and treatment services for people under the age of 21

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Federally qualified health center and rural health clinic services Family planning Nurse practitioner services Nurse midwife Nursing facilities for adults (age 21 and older) Home health care for nursing facility–eligible individuals Medically necessary transportation

Each state may provide additional optional services (e.g., prescription drugs, personal care services, dental services, respiratory care, and intermediate care facility services for individuals with intellectual or developmental disabilities). The services that a state's Medicaid program covers are described in the State Medicaid Plan, a document that must be approved by the Centers for Medicare and Medicaid Services (CMS). States can change what is in their State Medicaid Plan at any time through the State Plan Amendment (SPA) process. Amendments can be based on new data, changes in state or federal law, or a court order, and must be approved by CMS (Centers for Medicare and Medicaid Services, 2017c). How to Access

Each state operates its own Medicaid program. Each program has local eligibility offices where an older adult can apply. Information also is available online and can be viewed by searching for the state's Medical Assistance Office. State Medicaid programs may be known as Medicaid or another name (see TABLE 6-2 for some examples).

TABLE 6-2 State Medicaid Program Names (Examples)

State Name of Medicaid Program

California Medi-CAL

Massachusetts MassHealth

Oklahoma SoonerCare

Tennessee TennCare

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To apply for Medicaid, an older adult will need to complete an application form and provide documentation about finances and functional level.

Older Adults and Disabilities Policies The Aging Network

The Aging Network is the name of the collaboration of the AoA, state units on aging, area agencies on aging, tribal and native organizations, service providers, and volunteers. From the most recently published report to Congress, the AoA in the Executive Summary noted:

AoA's core programs, authorized under the Older Americans Act (OAA), help people choose to remain in their homes and communities for as long as possible. These services complement efforts of the nation's public health networks, as well as existing medical and healthcare systems, and support some of life's most basic functions, such as bathing and preparing meals. These programs also support family caregivers; address issues of exploitation, neglect, and abuse of older adults; and adapt services to the needs of Native Americans. The most recent data available show that, in FY 2015, AoA and the national aging services network rendered direct services to nearly 11 million individuals age 60 and over (one out of every six older adults), including nearly three million clients who received intensive in-home services. Critical supports, such as respite care and a peer support network, were provided to over 700,000 caregivers (U.S. Department of Health and Human Services, 2015b).

The AoA, funded through the Older Americans Act, provides block grants for services through state and territorial units on aging, designated by the governor or legislature of each state/territory. These units then procure services through area agencies on aging and their network of service providers and volunteers (Gelfand, 2006).

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History

(Administration for Community Living, 2017a) The OAA was signed into law in 1965, following the first White House Conference on Aging in 1961. The OAA established the AoA. Originally, the OAA designated its population as anyone 65 years or older. However, in subsequent amendments and reauthorizations, the age was changed to 60 years and older to allow individuals approaching “elderhood” to benefit from information and referral resources as part of their preretirement planning.

In addition, as elder policies evolved, OAA amendments have established the Aging Network framework through area agencies on aging (1974), added funding for senior centers (1974), created the Long-Term Care Ombudsman program for nursing facilities (1978; and later board and care homes and other residential options in 1981), added services related to elder abuse (1992), and focused interventions on caregivers (1992, 2000). Some of the amendments and reauthorizations have emphasized the role of the Aging Network in providing supportive services for older adults in the community so that they can remain at home (1984, 2006). Bearing this emphasis in mind, in 2012, the U.S. Department of Health and Human Services brought together the AoA, the Administration on Developmental Disabilities, and the Office on Disability to create the Administration for Community Living to further strengthen federal efforts to respond to the community living needs and preferences of people with disabilities of all ages, including older adults (Administration for Community Living, 2017b). Whom It Covers

The Aging Network and the OAA define an older American as being 60 years or older. Caregivers of older individuals are also covered. Benefits

(Gelfand, 2006) The AoA provides funds to state units on aging and tribal organizations to provide specific services as mandated by the OAA. State units on aging then fund area agencies on aging to provide these services to local older adults through

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service providers. The specific services include nutritional services (Title IIIc of the OAA), which involves both congregate meals (group dining) and home-delivered meals (Meals on Wheels); supportive services, which includes transportation, in- home care/personal care, adult day care, and information and referral; preventive health services; elder rights services, including the Long-Term Care Ombudsman program; and the National Family Caregiver Support Program, which offers counseling, training, and respite care to caregivers. How to Access

Area agencies on aging are the primary access point for the Aging Network. To find an area agency on aging or a specific service provider at the local level, an older adult, family member, or healthcare professional can contact the Eldercare Locator. This resource is maintained by the AoA and consists of a telephonic and web-based database of resources at the state and local level. To contact the Eldercare Locator, call 1-800- 677-1116 or visit the website www.eldercare.gov. Americans with Disabilities Act

Thirty-five percent of older adults report some type of disability in terms of hearing, vision, cognition, ambulation, self-care, or independent living (Administration on Aging, n.d.). This rate increases with age. Some older adults have disabilities or functional limitations that prevent them from performing activities and fully integrating into community living. The ADA is an important policy for all individuals with disabilities, including older people. The main aim of the ADA is to integrate individuals with disabilities into all aspects of living in the United States. The ADA prohibits discrimination of individuals with a disability in all areas of everyday life, including employment, transportation, public facilities, healthcare, and telecommunications (Americans with Disabilities Act Home Page, n.d.). History

(U.S. Department of Justice, 2017) The ADA was signed into law by President George H. W. Bush in 1990. This law represented a culmination of decades of work by people with disabilities and other advocates to have official recognition of

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discrimination due to disability as a civil rights issue (Frieden, 2005). Just as the civil rights movement demanded equal treatment under the law for people of all races, so did the ADA for people with disabilities (Frieden, 2004).

The ADA has provided tremendous gains in accessibility in many areas for individuals with disabilities (Frieden, 2005). These gains occurred despite several Supreme Court decisions in the 1990s that limited the ADA. However, the ADA was amended in 2008 (Americans with Disabilities Act Amendments Act [ADAAA]). These amendments have sought to broaden and strengthen the ADA and its mandate of equal treatment regardless of disability (Americans with Disabilities Act Home Page, n.d.). Whom It Covers

(U.S. Department of Justice, 2017) The ADA covers anyone who has a disability, which the ADA defines as “a physical or mental impairment that substantially limits a major life activity.” The ADAAA further provided examples of life activities that include caring for one's self, eating, sleeping, walking, standing, and communicating. Thus, many older people with self- described disabilities are covered under the ADA. Benefits

Importantly, for older adults, the ADA provides accessibility for health care and healthcare facilities. For example, hospitals and doctor's offices must be physically accessible to individuals with disabilities (FIGURE 6-5). Accessibility comes in many forms and may involve architectural access as well as specific access to medical equipment.

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FIGURE 6-5 Thanks to the Americans with Disabilities Act, ramps (built to ADA specifications) are required so that people can access

public spaces without difficulty. © SoniaBonet/iStock/Getty Images Plus

How to Access

In general, the ADA is not a policy that individuals access; rather, it is a policy that provides access to individuals with disabilities. Individuals with disabilities can bring complaints and/or lawsuits under the ADA if they believe that an organization (e.g., doctor's office, provider, or hospital) is discriminating against them due to their disability. Healthcare professionals can access additional ADA information and training through their professional organization or www.ada.gov.

Long-Term Services and Supports Long-term services and supports are those services that individuals, including older adults, need when their ability to take care of themselves is limited due to disability or chronic disease. As the name suggests, these services are often needed for long spans of time—years for older people and perhaps decades for individuals with disabilities. About 60% of adults who need long-term services and supports are 65 years or older (Nguyen, 2017). These services may involve healthcare services such as skilled nursing, physical or occupational therapy services, which are required for the ongoing treatment of a condition or the maintenance of functioning or more personal

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care services like bathing assistance or meal preparation. Long- term services and supports are available in both facility (e.g., nursing facilities or assisted living facilities) and community settings (e.g., at home).

In 1999, a Supreme Court decision (Olmstead v. L.C.) impacted long-term services and supports in the United States. The Olmstead decision supported the belief that institutionalization was discrimination based on disability and was against the ADA. Under the Olmstead decision and the ADA, states were required to make modifications to programs to avoid institutionalization and provide services in the most community-integrated setting possible. It is within this policy background that current long-term services and supports are provided (U.S. Department of Justice, Civil Rights Division, 2017).

Other trends have also impacted long-term service and support delivery for older adults and individuals with disabilities: independent living, consumer or self-direction, and family or person-centered care. Independent living is a philosophy and advocacy position of people with disabilities, who strongly support and demand that people with disabilities have the right to live independently and make their own decisions about their lives (Gibson, 2003). “Nothing about us without us” is one mantra of this group, which advocates for long-term supports and services in the setting of one's choice (typically, home and community). Consumer or self-direction is about the organization and management of long-term services and supports that allow individuals receiving care or their chosen surrogates/representatives to plan and implement their own services through a variety of mechanisms. Self-direction may include the ability to hire and fire personal care workers, set the specific schedule of workers, buy equipment to take the place of workers, or buy different services chosen by the individual. Family or person-centered care could include self- direction, but is more about how service providers are oriented to individuals needing care and their families (Feinberg, 2012). These types of long-term services and supports take an individual's needs, preferences, goals, and desires into account as the organizing framework around which all care is to be

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provided. For older adults, often the term used is family centered care to underscore the prominence of the family in caring for older adults needing care.

In spite of the Olmstead decision and the ADA, there is still an institutional bias in many policies and programs. Policymakers, advocates, and other stakeholders have been working over the last two decades to balance long-term supports and services so that more services are provided in the community and fewer services are provided in facility settings. This is particularly true for Medicaid. Medicaid pays for a large portion of long-term services and supports, both in facilities and at home and community-based settings. In 2013, HCBS accounted for 53% of all Medicaid long-term care spending (Nguyen, 2017). However, among services for older adults, home- and community-based spending accounted for 27% of Medicaid spending (Henry J. Kaiser Family Foundation, 2016).

Long-term services and supports can be quite expensive. In facilities, the cost of a semiprivate room can average $82,000 a year or more. For personal care services in the community, costs reported in 2016 averaged $31,000 a year; home health services bill an average of $20 an hour. Depending on the types of services an individual needs, typically community-based care will be less expensive than facility-based care. In 2013, the total formal long-term services and supports expenses were $339 billion (Nguyen, 2017). Medicare

Many older people and their families mistakenly believe that Medicare covers long-term services and supports. It is true that Medicare funds some long-term services and supports, with about 22% paid for through Medicare (Nguyen, 2017). Specifically, Part A funds skilled nursing facility care, rehabilitation, and home health care; however, this coverage is limited and not intended for long-term stays or custodial care. Medicare can cover certain types of nursing facility stays, but only for 100 days and only if certain conditions are met. Personal care in the community is never covered through Medicare.

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Medicaid

The largest payer of long-term services and supports in the United States is Medicaid. This includes both nursing facility care and HCBS. About 43% of the $339 billion spent on long- term services and supports is paid for through Medicaid (Nguyen, 2017). In fact, nursing facility care is one of the mandatory services covered by Medicaid in all states. This institutional bias is being addressed, but at present, HCBS are not mandated as Medicaid requirements. Community Medicaid services are provided through mandatory home health services, through any optional services that a state chooses to provide as part of its state plan (including but not limited to personal care attendant services), and through a specific regulatory device called a Medicaid waiver (discussed in the following section). For all Medicaid services, individuals must meet the eligibility requirements for their state's Medicaid program to qualify for any long-term services and supports, even if they do need long- term assistance. Often, even if they do not initially qualify financially for Medicaid at the beginning of the need for long- term services, they soon use their resources and “spend down” their assets and income to the point where they then do qualify for Medicaid. Medicaid HCBS Waivers and Special Programs

Medicaid services that states provide must meet certain requirements. For example, states cannot limit or deny services because of specific conditions or diagnoses: the comparability requirement. States must fund services that are in effect throughout the state: the statewideness requirement. However, because of certain amendments to the Medicaid Act, states can “waive” specific requirements and provide services in alternative ways. Notably, Medicaid waivers are available for states to provide HCBS (long-term services and supports available in nonfacility settings) (O'Keeffe et al., 2010). Many of these waivers are called either 1915(c) waivers, named after the section of the Social Security Act that authorizes them, or HCBS waivers. These HCBS waivers allow states to provide services to Medicaid recipients who would otherwise be in a nursing facility.

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Medicaid also funded the Money Follows the Person (MFP) demonstration program currently wrapping up in 43 states and the District of Columbia. This program was expanded as part of the ACA. MFP programs have helped more than 63,000 people transition from facilities into the community from 2008 to December 2015 (Centers for Medicare and Medicaid Services, 2017b). In each of the MFP states, enhanced Medicaid funding is available to the state (through a higher FMAP amount) for certain services designed to assist individuals with Medicaid currently residing in a nursing facility or other long- term care facility to transition into the community with a menu of services, including state-specific State Plan services, MFP demonstration services, and/or HCBS waiver services. With this enhanced funding, states are expected to strengthen the HCBS system for these individuals transitioning out of facilities as well as individuals already in the community who require home- and community-based long-term services, to allow them to be diverted from an admission into a nursing facility. Each state's MFP program is unique, with specific requirements and criteria approved by CMS.

In addition to MFP demonstration expansions, additional ACA benefits include a greater flexibility for states to offer HCBS through a state plan amendment. Another program, the Balancing Incentive program (2011–2015), provided enhanced Medicaid funds to states that had less than half of their long- term services and supports spending in HCBS to make these community services more accessible and understandable (Centers for Medicare and Medicaid Services, 2017a). The Aging Network

About 7% of long-term services and supports expenses are funded through other public funding, including OAA funding and the Aging Network (Nguyen, 2017). The Aging Network provides supportive services and nutritional services that can make up part of an older adult's long-term services and supports requirements (Gelfand, 2006). These services can include personal care and homemaker services (FIGURE 6-6), Meals on Wheels/dining options, transportation, and respite care. The Aging Network can also provide help through case management and information and referral programs. Benefits counseling,

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available through local Aging Network service providers, may also be of value to older adults needing long-term services and supports. In contrast to Medicaid, these services are available to all older adults age 60 years and older regardless of income, but are generally targeted towards low income, minority, or rural older adults, persons with frailty and or other disabilities.

FIGURE 6-6 The Aging Network provides supportive services such as personal care and homemaker services.

© Pixieme/Shutterstock

Private Funding

Some of the long-term services and supports that older adults need in the United States are provided either through private pay or by informal caregivers (family or friends) (Nguyen, 2017).

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About 17% (or almost $1 out of every $5) of long-term services and support expenses are paid out of pocket. Older adults often have savings, income, or other resources to pay for services. As noted earlier, some older adults will need to spend their savings and other resources before they can qualify for Medicaid long- term care. Families of older adults may also pay for services. A certified elder law attorney or financial planner can assist older adults and their families in determining the most appropriate long-term services and supports financing options. Benefits counseling through the Aging Network may also be of assistance.

Informal caregivers perform all types of caregiving activities, including activities of daily living (ADLs) and instrumental activities of daily living (IADLs) to the tune of an annual economic value of $470 billion (in 2013), which dwarfs formal (i.e., paid) caregiving expenses. ADLs include eating, toileting, transferring, dressing, and bathing activities. IADLs include using the telephone, laundry, housekeeping, transportation, shopping, managing medications, and handling finances.

These caregivers are more likely to be women and typically spend about 18 hours per week providing unpaid care. One study found that most (more than half) older adults who receive long-term services and supports in the home receive only informal care, with no publicly funded services (Houser, Gibson, & Redfoot, 2010). These informal caregivers are often at risk for a decline in their own physical and emotional health, with resulting depressive symptoms, stress, anxiety, and other chronic conditions. Long-Term Care Insurance

Some older adults may have long-term care insurance. There are about 7–8 million private long-term care policies in force (Gleckman, 2017). Taken together, these policies currently fund about 6% of long-term services and supports expenditures in the United States. (Nguyen, 2017).

Depending on the policy and its coverage, the policy may cover HCBS (such as home health care, personal attendant services, assisted living, and adult day care) as well as nursing

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facility care. Each policy will have different eligibility criteria and service requirements. Typically, a policy holder will qualify for benefits when he or she requires help with ADLs. Policies can be expensive, and premiums usually rise with age.

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▶ Summary Policy issues can affect every aspect of an older adult's life, from how much money he or she receives each month, to what health care he or she receives, to the types of medications he or she can afford. This chapter has presented several specific policies healthcare professionals working with older adults should understand to better assist older individuals with these aspects of life.

The policies and programs covered in this chapter include:

Social Security, a policy impacting retired workers, spouses, dependents, and individuals with disabilities. SSI, a program providing resources for lower income individuals, including older adults and people with disabilities. Medicare, health insurance for older adults and certain people with disabilities. Medicaid, a program providing health care for people with lower incomes and few resources. The Aging Network through the OAA, which provides social, nutritional, and supportive services to older adults and their caregivers. The ADA, a law providing civil rights protection to people with disabilities, including older adults.

Each policy affects different aspects of life, with a variety of eligibility criteria and covered benefits or programs. Healthcare professionals and organizations can assist older adults in determining which policies or programs impact them and how to access specific benefits.

CASE STUDIES

Case 1: Ben was born in 1960 and has remained steadily employed since getting his first job at age 17. For the last 28 years, he has been a long-haul driver for a trucking company. He enrolled in a

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defined benefit pension plan when he was hired, and once he reaches the 30-year employment mark, he can retire with full benefits. After many years of working away from home for weeks at a time, Ben is looking forward to spending more time with his family. Yet, he worries that he might be in a bad accident someday, leaving his wife, who just turned 61, in dire financial straits. His manager has told him that if he wants to continue working after 30 years, he could switch to a local delivery route or a desk job in the office. With those options, he can keep working until he is able to claim his full Social Security benefit. Ben is glad that he has options, but does not know what he wants to do. He thinks that maybe he will work for a few years after giving up his job as a long-haul driver, but is not sure that he wants to work at a desk job until he reaches his Social Security retirement age.

1. If Ben continues working until he reaches age 64, would he be able to claim Social Security benefits, and if so, what percentage of his full benefit would he receive?

2. If Ben was in an accident and passed away before retiring and claiming his benefit, would his wife receive any Social Security benefits? Why or why not?

3. Ben is enrolled in a defined benefit pension plan with his employer. How does that plan differ from a defined contribution program?

Case 2: Amelia is a single 63-year-old woman in semiretirement. She worked full time as a nurse at a hospital for 35 years, and now works part-time at a private practice. Although she is relatively healthy, she is not in perfect health. She is slightly obese, takes medication to control her hypertension, and has had cataracts removed from both eyes. She is also starting to feel the first twinges of arthritis and the cartilage in her left knee is deteriorating, which will eventually necessitate knee replacement surgery. Amelia has been able to maintain her health insurance, but it is expensive, and she will not be able to afford it when she retires. She would like to apply for Medicare as soon as she is able to do so.

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1. Does Amelia qualify for Medicare now? Why or why not? If not, when will she qualify?

2. Based on Ameila's circumstances, which version of Medicare do you think would be the best option for her and why?

3. What programs, if any, are available to help Amelia pay for her Medicare plan when she enrolls if her income is too low for her to afford it?

TEST YOUR KNOWLEDGE

Review Questions

1. Match the policy or program to the characteristic.

1. Social Security a. Created the Aging Network

2. Supplemental

Security Income

b. Designed during the Great

Depression

3. Medicare c. Civil rights law

4. Medicaid d. Health insurance funded through

payroll taxes

5. Americans with

Disabilities Act

e. Federal–state partnership providing

health care

6. Older Americans

Act

f. Can be administered by the state or

by the federal government

2. The “doughnut hole” of Part D of Medicare refers to the gap

a. in prescription drug coverage. b. in coverage for emergency room visits. c. in rehabilitation coverage after 30 days. d. in coverage for nursing home care.

3. If an older adult who has worked for 40 years wants

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to retire with full Social Security benefits, what is the most important factor to consider?

a. Date of birth b. Length of work history after 40 years c. Marital status d. Availability of a 401(k)

4. What is the name of the federal agency that provides funding for aging services?

a. Social Security Administration b. Centers for Medicare and Medicaid Services c. White House Conference on Aging d. Administration on Aging in connection with the

Administration for Community Living

5. __________________ is the social insurance program for older adults and certain younger people with disabilities.

a. Medicare b. Medicaid c. Medigap d. Social Security

Learning Activities

1. People often get the Medicare and Medicaid programs confused. Compare and contrast Medicare and Medicaid in terms of eligibility, services, and funding. Develop a simple way to present this information (e.g., PowerPoint presentation, table, notes, or illustrations). Ask someone to review it for clarity.

2. An older woman needs long-term services and supports and wants to stay in her home. She receives Medicare and Medicaid, and a modest Social Security benefits. What other resources would you pursue to assist her?

3. Think about a situation in which you might need to

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identify resources for an older adult (maybe a family member needs long-term services and supports or a friend is nearing retirement or someone close to you has to make a healthcare decision). Check out the websites listed under “Resources.”

a. Which websites or resources were the most helpful to you? Why? What kinds of information were available, accessible, and most interesting to you? Were you able to find out what you needed or wanted to know?

b. Based on your experiences and knowledge, develop your own pamphlet or resource for older adults and their families/caregivers.

4. The year 1965 comes up several times in this chapter. Why was 1965 such an important year for policy issues? Conduct some research online and uncover what was going on in the United States at that time. Talk to an older person to learn about their perspectives on the policies that helped shape the futures of older adults.

5. Conduct a research project on how another country funds long-term services and supports. Compare and contrast that country to the United States in terms of public versus private funding, the balance between institutional and home and community-based services, and informal caregiving.

Resources Social Security

www.ssa.gov Supplemental Security Income

www.ssa.gov/pgm/ssi.htm Pensions

www.pensionrights.org/find-help Medicare

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www.medicare.gov Medicaid

www.medicaid.gov Aging Network

www.eldercare.gov www.acl.gov www.n4a.org www.longtermcare.acl.gov

Americans with Disabilities Act www.ada.gov www.ncd.gov

References Administration for Community Living. (2017a). Older Americans Act.

Retrieved from https://www.acl.gov/about-acl/authorizing- statutes/older-americans-act

Administration for Community Living. (2017b). Organizational History. Retrieved from https://www.acl.gov/about-acl/history

Administration on Aging. (n.d.). Profile of Older Americans 2016 (AoA). Retrieved from https://www.acl.gov/aging-and-disability- in-america/data-and-research/profile-older-americans

Administration on Community Living. (n.d.). Older Americans Act: Historical Evolution of Programs for Older Americans. Retrieved from: www.acl.gov/about-acl/authorizing-statutes/older- americans-act

Americans with Disabilities Act Home Page. (n.d.). Retrieved from https://www.ada.gov/

Centers for Medicare and Medicaid Services. (2017a). Balancing Incentive Program. Retrieved from www.medicaid.gov/medicaid/ltss/balancing/incentive/index.html

Centers for Medicare and Medicaid Services. (2017b). Money Follows the Person. Retrieved from https://www.medicaid.gov/medicaid/ltss/money-follows-the- person/index.html

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Centers for Medicare and Medicaid Services. (2017c). Medicaid State Plan Amendments. Retrieved from https://www.medicaid.gov/state-resource-center/medicaid-state- plan-amendments/medicaid-state-plan-amendments.html

Centers for Medicare and Medicaid Services. (n.d.). What's Medicare? Retrieved from https://www.medicare.gov/sign-up-change- plans/decide-how-to-get-medicare/whats-medicare/what-is- medicare.html

Committee on Social Insurance of the American Academy of Actuaries. (1998). Social Insurance (Do. No. 062). Actuarial Standards Board. Retrieved from http://www.actuarialstandardsboard.org/wp- content/uploads/2014/07/asop032_062.pdf

Cubanski, J., & Neuman, T. (2017). The facts on Medicare spending and financing. San Francisco, CA: Henry J. Kaiser Family Foundation.

Federal Interagency Forum on Aging-Related Statistics (2016). Older Americans 2016: Key indicators of well-being. Washington, DC: U.S. Government Printing Office.

Feinberg, L. (2012). Moving toward person-and family-centered care (Indights on the Issues 60). Washington, DC: AARP Public Policy Institute. Retrieved from https://www.aarp.org/content/dam/aarp/livable- communities/old-learn/health/moving-toward-person-and- family-centered-care-aarp.pdf

Frieden, L. (2004). Righting ADA. National Council on Disability. Retrieved from https://ncd.gov/rawmedia_repository/b6fbb02a_34f3_4bfb_a048_3385cbb184f8.pdf

Frieden, L. (2005). NCD and the Americans with Disabilities Act: 15 Years of Progress. National Council on Disability. Retrieved from https://ncd.gov/rawmedia_repository/578d6d94_2d35_4d21_b0c6 _d71a5a86a86a.pdf"

Gelfand, D. (2006). The Aging Network: Programs and Services. New York: Springer.

Gibson, M. (2003). Beyond 50.03: A Report to the Nation on Independent Living and Disability: Executive Summary. AARP. Retrieved from https://www.aarp.org/health/doctors- hospitals/info-11-2003/aresearch-import-753.html

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Gleckman, H. (2017). Who Owns Long-Term Care Insurance (2016). Retrieved from Forbes https://www.forbes.com/sites/howardgleckman/2016/08/18/who- owns-long-term-care-insurance/#131071ca2f05

Henry J. Kaiser Family Foundation. (2013). Summary of the Affordable Care Act. Retrieved from https://www.kff.org/health- reform/fact-sheet/summary-of-the-affordable-care-act/

Henry J. Kaiser Family Foundation. (2015). Medicare Timeline. Retrieved from https://www.kff.org/medicare/timeline/medicare- timeline/

Henry J. Kaiser Family Foundation. (2016). Medicaid's Role in Meeting Seniors' Long-Term Services and Support Needs. author. Retrieved from http://files.kff.org/attachment/Fact-Sheet- Medicaids-Role-in-Meeting-Seniors-Long-Term-Services-and- Supports-Needs

Henry J. Kaiser Family Foundation. (2017a). An Overview of Medicare. author. Retrieved from http://files.kff.org/attachment/issue-brief-an-overview-of- medicare

Henry J. Kaiser Family Foundation. (2017b). Medicare Advantage. Retrieved from http://files.kff.org/attachment/Fact-Sheet- Medicare-Advantage

Henry J. Kaiser Family Foundation. (2017c). Medicaid Pocket Primer. author. Retrieved from http://files.kff.org/attachment/Fact-Sheet- Medicaid-Pocket-Primer

Henry J. Kaiser Family Foundation. (2018, April 3). Poll: Survey of the Non-Group Market Finds Most Say the Individual Mandate Was Not a Major Reason They Got Coverage in 2018, And Most Plan to Continue Buying Insurance Despite Recent Repeal of the Mandate Penalty. Retrieved from https://www.kff.org/health-reform/press- release/poll-most-non-group-enrollees-plan-to-buy-insurance- despite-repeal-of-individual-mandate-penalty/

Houser, A., Gibson, M., & Redfoot, D. (2010). Trends in family caregiving and Paif home care for older people with disabilities in the community: Data from the national long-term care survey. Washington, DC: AARP Public Institute. Retrieved from https://assets.aarp.org/rgcenter/ppi/ltc/2010-09-caregiving.pdf

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Medicare.gov. (n.d.). The Affordable Care Act and Medicare. Retrieved from https://www.medicare.gov/about-us/affordable-care- act/affordable-care-act.html

National Law Review. (2011). HHS Halts Implementation of the CLASS Program. Retrieved from https://www.natlawreview.com/article/hhs-halts- implementation-class-program

Nguyen, V. (2017). Long-term support and services. Washington, DC: AARP Public Policy Institute. Retrieved from https://www.aarp.org/content/dam/aarp/ppi/2017- 01/Fact%20Sheet%20Long- Term%20Support%20and%20Services.pdf

O' Keeffe, J., Saucier, P., Jackson, B., Cooper, R., McKenney, E., Crisp, S., & Charles, M. (2010). Understanding Medicaid home and community services: A primer. Washington, DC: U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation.

Paradise, J., Lyons, B., & Rowland, D. (2015). Medicaid at 50. San Francsico, CA: Henry J. Kaiser Family Foundation.

Romig, K., & Sherman, A. (2016). Social Security Keeps 22 Million Americans Out of Poverty: A State by State Analysis. Center on Budget and Policy Priorities. Retrieved from https://www.cbpp.org/research/social-security/social-security- keeps-22-million-americans-out-of-poverty-a-state-by-state

Social Security Administration. (2005). Social Security: A Brief History (SSA Publication No. 21-059). Washington, DC: U.S. Government Printing Office.

Social Security Administration. (2017a). How work affects your benefits (SSA Publication No. 05-10069). Washington, DC: U.S. Government Printing Office.

Social Security Administration. (2017b). Understanding the benefits (SSA Publication No. 05-10024). Washington, DC: U.S. Government Printing Office.

Social Security Administration. (2017c). What you need to know when you get Supplemental Security Income (SSI) (SSA Publication No. 05-11011). Washington, DC: U.S. Government Printing Office.

The Boards of Trustees, F. H. (2017). 2017 annual report. Washington, DC: The Board of Trustees.

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U.S. Department of Health and Human Services. (2015a). ASPE FMAP 2017 REPORT. author. Retrieved from https://aspe.hhs.gov/basic- report/fy2017-federal-medical-assistance-percentages

U.S. Department of Health and Human Services. (2015b). FY2015 Report to Congress: Older Americans Act. author. Retrieved from https://www.acl.gov/about-acl/reports-congress-and-president

U.S. Department of Health and Human Services. (2017).Choosing a Medigap policy: A guide to health insurance for people with Medicare. Baltimore, MD: U.S. Government Printing Office.

U.S. Department of Health and Human Services, C. f. (2014). Medicare basics. Baltimore, MD: U.S. Government Printing Office.

U.S. Department of Justice, Civil Rights Division. (2017). Olmstead: Community Integration for Everyone. Retrieved from https://www.ada.gov/olmstead/

U.S. Department of Justice. (2017). Americans with Disabilities Act. Retrieved from https://www.ada.gov/2010_regs.htm

Van De Water, P. (2017). Medicare is not “bankrupt”: Health care reform has improved program's financing. Washington, DC: Center on Budget and Policy Priorities.

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© patpitchaya/Shutterstock.

CHAPTER 7 The Physiology and Pathology of Aging Kimberly Wilson, DNP, RN

CHAPTER OUTLINE

INTRODUCTION

THEORIES OF AGING Programmed Theories of Aging Environmental Theories of Aging

PHYSIOLOGICAL CHANGES OF AGING Cardiovascular System Respiratory System Gastrointestinal System Genitourinary System

Excretion of Waste Maintaining Homeostasis in Fluid Compartments

Musculoskeletal System

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Nervous System Memory Intelligence Motor Function Sleep

Endocrine System Immune System Integumentary System

Hair Sensory Organs

Vision Hearing Taste Smell

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Differentiate between average life expectancy and maximum life span.

2. Compare and contrast the genetic and environmental theories of aging.

3. Explain the possible role of free radical formation in the aging process.

4. Identify common age-related changes related to the cardiovascular, respiratory, gastrointestinal, genitourinary, musculoskeletal, nervous, sensory, endocrine, immune, and integumentary systems.

5. Discuss health promotion for the aging process in relation to prevalent chronic diseases.

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KEY TERMS

Atherosclerosis Average life expectancy Cataract Chronic bronchitis Chronic obstructive pulmonary disease Diabetes mellitus Diaphragm Diverticulosis Dysphagia Fecal incontinence Free radical Gastritis Hyposmia Hypothalamus Kyphosis Maximum life span Metastasize Myocardial infarction Osteoarthritis Osteoporosis Peptic ulcers Presbycusis Presbyopia Sarcopenia Senescence Urinary incontinence Xerostomia

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▶ Introduction For hundreds of years, people have sought ways to live longer and slow down the aging process. Remedies have been promoted through abundant advertising and have included therapies such as special diets, vitamin supplements, cosmetic measures, and various other aids to help reduce the impact of aging. Even though researchers may study specific aspects of aging associated with their particular fields, a commonly held opinion is that the aging process is not linear, but multifaceted and influenced by individual biopsychosocial factors as well as external factors such as context, environment, and technology.

The average life expectancy (TABLE 7-1) in the United States has risen from about 47.3 years in 1900 to 78.8 years in 2015 (National Center for Health Statistics, 2017). This increase can largely be attributed to improvement in water supplies, sanitation, health technology, disease control, health promotion, and lower infant mortality rates (Forsberg & Fichtenberg, 2013). However, during the same period, there has been no change in the maximum life span (MLS), that is, the oldest age reached by an individual in a population, which is estimated to be about 120 years (Hayflick, 1997; Schneider, 1985). Although improvements in our standard of living have helped spare us from several causes of premature death, such as cholera, tuberculosis, and influenza, changes have done nothing to slow down the inherent aging process. In fact, any medical intervention that claims to slow down human aging must be shown to increase the MLS potential. But, to date, none have done so.

TABLE 7-1 Life Expectancy at Selected Ages, by Sex: United States 1900, 1950, 2014, and 2015

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Death registration area only. The death registration area increased from 10 states and the

District of Columbia (DC) in 1900 to the coterminous United States in 1933. See Appendix

II, Registration area.

Includes deaths of persons who were not residents of the 50 states and DC.

Life expectancy estimates for 2013 are based on final Medicare data. Life expectancy

estimates for 2014 and 2015 are based on preliminary Medicare data.

Data from National Center for Health Statistics. (2017). Health, United States, 2016: With

chartbook on long-term trends in health. Hyattsville, MD: Centers for Disease Control and

Prevention.

An unchanging MLS coupled with increasing life expectancy suggests two dimensions to the aging process. First, it supports the notion of distinguishing disease from aging. To illustrate, one of the most important chapters in the history of medicine has been the eradication of smallpox from the face of the earth through the use of vaccines. Although children who are immunized against smallpox have been spared a devastating infectious disease, they are not likely to age more slowly than nonimmunized children. Second, a MLS that has not likely changed in centuries points to the existence of a “biological clock” that predetermines humans' length of life. No such clock has been discovered, and it is perhaps an oversimplification of human physiology to suggest that one single mechanism in the body is responsible for aging. Nonetheless, it certainly appears that there are relatively fixed limits on how long the human body lasts.

A fixed life span, however, does not necessarily sentence adults to pain and suffering as they get older. Many of the physiologic changes associated with aging can be slowed to

1

2

3

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some extent with a healthy diet and consistent regimen of moderate exercise. Moreover, many of the chronic diseases prevalent in older adults are either preventable or modifiable with healthy lifestyle habits (TABLE 7-2). Reduction of dietary fat (especially saturated fats and cholesterol) lowers one's risk of coronary artery disease and stroke (i.e., occlusion or rupture of a cerebral artery) as well as breast and colon cancer (Spence, 2007; Tufts University, 2012). A program of increased physical activity increases one's resting and maximum cardiac output (the amount of blood pumped out of the heart per minute) while decreasing the chance of developing hypertension (American Heart Association, 2014). To the extent that exercise helps prevent obesity, it also decreases the likelihood that an individual will develop osteoarthritis and non-insulin- dependent diabetes mellitus (DM; a disease that affects the body's ability to produce or use insulin) or suffer from a heart attack (American Diabetes Association, 2014; National Osteoporosis Foundation, 2017). Regular exercise, coupled with sufficient dietary calcium intake, lowers the risk of osteoporosis and its complications such as broken hips and slipped intervertebral disks (National Osteoporosis Foundation, 2017). In addition to these physical benefits, exercise appears to have psychological benefits as well. Exercise can lift one's spirits and alleviate loneliness and depression (Ruuskanen & Ruoppila, 1995). Conversely, sedentary lifestyles and, in particular, extended bed rest increase the chances of thromboembolic disease, respiratory infection, and decubitus ulcers (bed sores; Biswas et al., 2015).

TABLE 7-2 Common Chronic Diseases of Aging Potentially Modifiable in Middle Age Through Personal Changes in Lifestyle

Disorder Preventive Strategy

Hypertension (high blood pressure)

Reduction of dietary sodium and alcohol Reduction of body weight Develop a daily exercise program

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Monitor blood pressure Stress management

High cholesterol Smoking cessation Reduction of alcohol consumption Develop a daily exercise program Eat a heart-healthy diet

Arthritis Smoking cessation Stress management Develop a daily exercise program (stretching/strength building) Maintain healthy weight

Ischemic heart disease (coronary heart disease)

Smoking cessation Stress management Develop a daily exercise program (including cardio) Avoid saturated and trans fat in diet Reduce intake of sugar and sodium Develop healthy sleep patterns

Diabetes mellitus (Type 2)

Monitor carbohydrates and calories Discuss alcohol consumption with physician Develop a daily exercise program Maintain a healthy weight

Chronic kidney disease Risk factors for kidney damage: diabetes and high blood pressure Maintain regular healthcare screenings

Heart failure Eat a heart-healthy diet Maintain regular healthcare screenings Develop a daily exercise program with help from physician

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Depression Develop a daily exercise program Maintain a healthy weight Stress management Maintain a healthy diet—limit alcohol, caffeine, and processed foods

Alzheimer's disease and dementia

Develop a daily exercise program Develop healthy sleep patterns Maintain a healthy diet

Chronic obstructive pulmonary disease (COPD)

Smoking cessation Develop a daily exercise program Avoid secondhand smoke and other irritants Ask physician about flu and pneumonia vaccines

Modified from National Council on Aging. (2017). Top 10 chronic conditions in adults

65+ and what you can do to prevent or manage them. Retrieved from

www.ncoa.org/blog/10-common-chronic-diseases-prevention-tips/

Perhaps, the most important lifestyle choice an individual can make is to not smoke cigarettes or use tobacco products. Indeed, cigarette smoking is the most common preventable cause of disease and death in the United States. It leads to chronic obstructive pulmonary disease (COPD; e.g., emphysema, chronic bronchitis), lung cancer, and is a major cause of other cancers of the upper respiratory and digestive tracts (Li et al., 2014). Cigarette smoking also increases a user's chance of developing atherosclerosis and its complications— heart attacks and strokes. Ultimately, cigarette smoking has been shown to decrease life expectancy by 7 years and disease-free years by 14 years (Bernhard, Moser, Backovic, & Wick, 2007).

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▶ Theories of Aging Although research on the aging process has continued for decades, we continue to seek to understand it and find the fountain of youth! Aging, or senescence, needs to be conceptualized as a multifactorial process with a rate dependent on both genetic (programmed) and environmental (damage or error) phenomena (Jin, 2010; Weinert & Timiras, 2003; Tosato, Zamboni, & Ferrini, 2007). Senescence is characterized as decreased human functioning due to the inability of cells within the body to reproduce over time (Timiras, 1994). Although many theories have been proposed to explain the aging process, no single theory has yet to fully explain the phenomenon. Aging is a complex process influenced by multiple factors occurring at several organizational levels in the body. The following sections highlight a few of these incomplete theories of aging.

Programmed Theories of Aging Because the stages of cellular, tissue, organ, and body development are, for the most part, controlled by our genetic machinery and thus programmed, some theories of aging have focused on the role of DNA (deoxyribonucleic acid), RNA (ribonucleic acid), and the proteins made from nucleic acid “blueprints.” One such theory is that senescence results from the gradual accumulation of random mutations (alterations in the DNA) in somatic cells of the body (Ziegler, Wiley, & Velarde, 2015). According to this somatic mutation theory, radiation and other environmental mutagens alter the structure of the genetic code and thus change the sequence of amino acids found in enzymes and other proteins. Over time, such minor alterations accumulate and have damaging effects on protein functioning and thus on body functions. The varying rates of mutagenesis and proficiencies of DNA repair may affect longevity. Research findings have suggested that longer lived species tend to have more effective mechanisms for repairing molecular damage than shorter lived species (Burkle et al., 2002; Ogburn, et al.,

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2001). Although the number of DNA mutations increases with age, proving that such changes is the cause rather than the result of aging has been more difficult (Ziegler et al., 2015). Two other program-based theories, endocrine and immunological, focus on a gradual biological decline over time. In the former, biological clocks and hormone regulation control the rate of aging. In the latter, the immune system is “coded” to erode over time, thus enhancing the body's susceptibility to disease and death.

Environmental Theories of Aging The wear and tear theory of aging proposes that aging is inevitable as cells, tissues, and organs, much like machines, wear out from continued use. The machine analogy is not a perfect fit because cells, unlike machines, have several mechanisms to repair their injuries. However, with the passage of time, the damage resulting from wear and tear might accumulate to a point at which the body's capacity for maintenance and repair is slowed and halted. Cells (and therefore organisms) with higher rates of metabolism might “wear out” more quickly than do those with lower metabolic rates, thus aging more quickly and dying sooner.

The inverse correlation between basal metabolic rate and longevity (across a wide number of species) has led some experimental gerontology researchers to reformulate the wear and tear hypothesis into a rate-of-living theory of aging. This reconceptualized approach attributes variation in life span to varying metabolic rates per gram of metabolizing tissue across species (Kirkwood, 2002). Every organism, then, is endowed with the ability to burn a fixed number of calories in its lifetime, after which the accumulation of wear and tear results in the organism's death. Members of a species with a high metabolic rate burn up their fixed number of total calories more quickly, sustain accumulated wear and tear more rapidly, and die sooner than species with low metabolic rates.

On the surface, the well-documented effect of caloric restriction (i.e., limiting food intake) to increase average life expectancy seems to support the rate-of-living theory of aging (Bishop & Guarente, 2007; Dilova, Easlon, & Lin, 2007).

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Many studies have consistently shown that caloric restriction not only increases average life expectancy, but also diminishes many of the physiologic changes associated with increasing age such as rising serum cholesterol levels, decreasing bone mass, and deteriorating immune system function (Yamada, et al., 2017). Nonetheless, it does not appear that caloric restriction has a significant effect on an organism's specific basal metabolic rate (Ravussin et al., 2015). The basis for its effect must, therefore, lie elsewhere. However, the rate-of-living theory has been challenged by researchers who have identified exceptions to the underlying assumption that animals with lower metabolic rates live longer than those with higher metabolic rates (Austad & Fischer, 1991; de Magalhaes, Costa, & Church, 2007).

Still, the rate-of-living theory of aging has helped focus experimental gerontology on another promising theory, the free radical theory of aging, which is a specific version of the wear and tear theory. The free radical theory attributes cellular (and therefore organismal) aging to the highly reactive accumulating by-products of oxidative metabolism known as free radicals (Harman, 2002). Free radicals are molecules that contain at least one unpaired electron in their outer valence shells. Free radicals most notably form in the mitochondria of cells, the site of aerobic respiration (where food is “burned up” for energy) and where electrons are stripped from temporary carrier molecules and passed down a chain of membrane-bound protein carriers to be accepted by oxygen (Lippman, 1981; Nohl & Hegner, 1978). Free radicals are relatively rare in nature because they are chemically unstable. When formed, they usually bind with other free radicals to create more stable molecules. However, when free radicals form in cells, they can initiate chain reactions that consume oxygen and randomly damage lipid molecules, enzymes, and nucleic acids.

One part of a cell's structure that is particularly vulnerable to chemical attack by free radicals is the cell membrane and organelles, including the mitochondria. The lipids embedded in these membranes are major targets for free radicals. But cells have specific defenses against attacks, including vitamin E (alphatocopherol), vitamin C (ascorbic acid), and several

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enzymes that stop free radical chain reactions (Leibovitz & Siegel, 1980).

If the levels of free radical “scavengers” such as vitamins E and C are depleted, damage to lipid membranes may be more permanent. Repeated peroxidation (oxidation of lipids) of unsaturated lipids can cause inappropriate cross-linking of lipids to proteins and nucleic acids (Pryor, 1978) and lead to the formation of lipofuscin (pronounced lip-uh-fuhs-en; also known as age pigment). Granules of this yellowish-brown pigment are found in the cytoplasm of aged cells. Slow, predictable accumulation of lipofuscin is the most reliable marker of chronological age in cells and has been found in nearly every organism with cells with nuclei (Brunk & Terman, 2002; Sohal, 1981).

Evidence for the age-related accumulation of lipofuscin and other types of free radical-mediated cell damage is widespread; however, proving that free radical damage is the primary determinant of aging has been more difficult. Lipofuscin accumulation appears to be a consequence rather than a cause of aging (Timiras, 2007). Although studies in which organisms were given supplements of vitamin E throughout life revealed that the rate of lipofuscin accumulation decreased, none showed vitamin E to be a greatly beneficial change in the MLS potential (Brunk & Terman, 2002; Ernst et al., 2013).

Nonetheless, the potential importance of free radical- mediated destruction in aging cells should not be ignored, especially in its relationship with diseases. Consider cigarette smoking, the most common preventable cause of disease and death in the United States. The smoke from cigarettes contains free radicals whose presence can alter or destroy important biological molecules such as DNA and enzymes (Church & Pryor, 1985; Nakayama, Kodama, & Nagata, 1984). Damage to DNA, in turn, may play a role in the etiology of lung cancer, whereas damage to enzymes such as alpha-1 antitrypsin may cause the progressive and irreversible destruction of lung tissue in patients with emphysema (see the section “Respiratory System” later in this chapter). Thus, smoking may accelerate the aging process by accelerating the free radical mechanism, a

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process that some researchers claim is at the heart of the natural aging process (de Magalhaes et al., 2007).

Clearly, the distinction between disease and pure aging becomes less clear at the cellular level and no single explanation of the aging process is completely satisfactory. Aging is a complex phenomenon orchestrated by events at several organizational levels in the body. Any efforts aimed at limiting the effects of aging will also likely have to occur on multiple levels. Although the causes of aging remain elusive, the effects of aging are more readily apparent as disease processes occur more frequently as one ages.

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▶ Physiological Changes of Aging Cardiovascular System The cardiovascular system (consisting of the heart and blood vessels) is responsible for the circulation of blood that delivers oxygen and nutrients to, and removal of waste products from, all parts of the body. Damage to this system can have negative implications for the entire body. The ventricles of the heart generate pressure that propels blood through arteries, arterioles, capillaries (the site of nutrient and waste exchange), venules, and finally veins, the blood vessels that return blood to the atria of the heart. The left ventricle has the thickest muscular wall and pumps blood out to the body systems (via higher pressure systemic circulation) while the right ventricle pumps blood to the lungs (via lower pressure pulmonic circulation; FIGURE 7- 1).

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FIGURE 7-1 The cardiovascular system. Note: The arrows indicate the direction of blood.

The significance of cardiovascular disease (CVD) in middle-aged and older adults cannot be overemphasized. CVD continues to be one of the leading causes of death (World Health Organization, 2017a). Public health initiatives have contributed to reduction the prevalence of risk factors related to

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CVD such as smoking, hypertension, and other related factors (Centers for Disease Control and Prevention, 2017b).

The predominant change that occurs in blood vessels with age is atherosclerosis, defined as the development of fatty plaques and proliferation of connective tissue in the walls of arteries. Slow destruction of the arterial wall can lead to blockage of the artery, particularly when a blood clot develops on its damaged surface. This condition is so prevalent that one might argue it is an inevitable phenomenon of aging. Although the clinical consequences of atherosclerosis are often sudden and life-threatening (e.g., heart attacks and strokes) and come toward the end of life, it has become clear in recent years that the earliest evidence of fatty accumulation is detectable in the first decade of life and that lesions progress throughout life (Alpert, 2012). Muscles within the heart become less efficient and lose strength causing cardiac output to decrease and place more demand on the heart. As a result, the heart needs additional time to perform basic functions and due to decreased elasticity and sensitivity, has more difficulty regulating blood pressure. Cardiovascular conditions affected by those changes are shown in TABLE 7-3.

TABLE 7-3 Cardiovascular Conditions

Disease Description

Coronary heart disease

Disease of the blood vessels supplying the heart muscle

Cerebrovascular disease

Disease of the blood vessels supplying the brain

Peripheral arterial disease

Disease of blood vessels supplying the arms and legs

Rheumatic heart disease

Damage to the heart muscle and heart valves from rheumatic fever caused by streptococcal bacteria

Congenital heart disease

Malformations of heart structure existing at birth

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Deep vein thrombosis and pulmonary embolism

Blood clots in the leg veins, which can dislodge and move to the heart and lungs

Reprinted from World Health Organization. (2017a). Cardiovascular diseases fact sheet.

Retrieved from www.who.int/mediacentre/factsheets/fs317/en/.

Complications resulting from atherosclerosis begin as early as the fourth decade of life and increase in frequency with each succeeding decade. Particular consequences of the disease depend on the artery or arteries involved. Blockage of coronary arteries can cause myocardial infarction (heart attack), whereas occlusion or rupture of a cerebral artery can result in a stroke. The development of fatty plaques in the renal arteries can cause hypertension and kidney failure, whereas blockage of an artery in the leg can cause peripheral vascular disease marked by severe pain (called claudication) deep vein thrombosis (DVT) and ulcerations of the skin.

Although nearly everyone is prone to some degree of atherosclerosis, there are several risk factors that seem to accelerate the disease process. They include older age, genetic predisposition, hypertension, DM, high blood cholesterol level, cigarette smoking, obesity, poor physical fitness, and “type A” personality (e.g., aggressive, competitive, ambitious). The confluence of many of these risk factors in older adults makes complications of atherosclerosis more prevalent in this age group (Alpert, 2012).

Heart attacks are more common in individuals older than age 50, and coronary artery disease leading to heart attack is the number one killer of people in the United States (Johnson & Sandmire, 2004). Worldwide, CVD accounts for about 37% of all deaths (World Health Organization, 2017a).

The warning signs of an impending heart attack are not always obvious in older adults and individuals with DM, sometimes making quick response and treatment unlikely. Common signs of an impending heart attack could be chest pain/pressure, discomfort in the arms, back, neck jaw, or stomach, shortness of breath (with or without discomfort in

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chest), lightheadedness, nausea, and sweating (American Heart Association, 2016). Women may experience a heart attack without experiencing chest pain or pressure (American Heart Association, 2016).

Given the increased risk of CVD in late life, it makes sense for everyone, regardless of age, to maintain a proper diet, exercise regularly, maintain a healthy weight, manage stress, avoid cigarettes, and schedule annual physicals. Nearly all people know this information about what is good for them, but carrying through on these recommendations takes motivation and commitment, and often the assistance of a caring health care professional.

As health care professionals, it is important to provide education to all clients or patients. Prevention should be the priority for helping older people avoid the onset of disease. For individuals already diagnosed with cardiovascular problems, it is prudent for health care professionals to still engage them in education to prevent further complications. Encouragement through effective intervention more likely will lead to a pathway of success.

Respiratory System The function of the respiratory system is to transport oxygen to and remove carbon dioxide from the bloodstream. The air breathed in is warmed, humidified, and cleansed as it passes successively through the mouth and nasal cavities, pharynx, larynx, trachea, and bronchi to reach the lungs (FIGURE 7-2). In the lungs, inhaled air continues through smaller bronchi, bronchioles, and alveolar ducts to finally reach alveoli, the tiny, thin-walled air sacs covered by capillaries that are the major site of gas exchange between air and the bloodstream. The 300 million alveoli in the lungs provide about 75 square meters of surface area for gas transport to and from the blood. The lungs, located in the thoracic cavity (or thorax) are enclosed by the rib cage and diaphragm, a dome-shaped skeletal muscle located beneath the lungs. During inhalation, the diaphragm contracts, lowering the floor of the thorax while external intercostal muscles between the ribs contract to swing the ribs forward and upward. Both these actions help expand the thorax, creating a

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vacuum-like effect that draws air into the respiratory tract and lungs. The lungs expand passively during this process because of their adherence to the inner thorax wall. Exhalation is normally a passive process, whereby the relaxation of breathing muscles causes the thorax to contract down to a smaller volume, largely by elastic recoiling of the rib cage and lung tissue.

FIGURE 7-2 The respiratory system

Changes in mechanical properties of the thorax wall are coupled with changes in lung tissue as we age. Moreover, the rib cage stiffens over time due to calcification of cartilage between the ribs and vertebrae, and the exaggerated curvature of the thoracic spine (i.e., kyphosis). These skeletal changes limit mobility of the rib cage, making it difficult for external intercostal muscles to expand the rib cage. Thus, it is not surprising that older adults experience shortness of breath (dyspnea) more quickly during exercise than do younger individuals. Additionally, although a healthy older adult might breathe adequately to meet the body's needs at rest, the changes

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(described earlier) may limit his or her tolerance for exercise, especially when coupled with the age-related decrease in cardiac output (also described earlier).

Superimposed on the normal age-related changes to the respiratory system are diseases and conditions that increase in frequency after age 50. Respiratory health problems include emphysema, chronic bronchitis, pneumonia, and lung cancer. Together, the first two are referred to as COPD, and these along with lung cancer are caused primarily by cigarette smoking or chronic exposure to unhealthy air.

The steps leading to emphysema begin when cigarette smoke (or other pollutants in the air) irritates the respiratory tract, stimulating proliferation of white blood cells (WBCs) called macrophages. These macrophages release chemicals that attract large numbers of neutrophils, another type of WBC, to the inflamed area. Neutrophils release protease enzymes, one of which is elastase that can damage elastin proteins found in elastic the tissue of the lungs. The effects of elastase are limited by a protective enzyme called alpha-1 antitrypsin, which inactivates elastase. However, alpha-1 antitrypsin can be damaged by the free radicals produced from cigarette smoke. Thus, elastase is free to destroy the lung tissue. The stage is then set for a slow, irreversible loss of functional elastic tissue in the lungs, resulting in the loss of alveolar wall surface area and premature collapsing of small bronchioles during exhalation (hence, the “obstructive” in COPD) (Janoff, 1985; Pryor, Dooley, & Church, 1986; Travis & Salvesen, 1983; Weiss, 1989).

As more air gets “trapped” distal to the bronchiolar obstruction, the lung volume increases, creating the classic “barrel chest” appearance. In the end stages of emphysema, destruction of alveolar walls can be so extreme that large, visible air pockets form in the lungs. Collapsed bronchiolar airways are more difficult to reopen upon inhalation. Thus, emphysema increases the work demand of breathing, so that an individual must use the accessory muscles of inhalation to supplement the activity of the diaphragm and external intercostal muscles. Because of the diminished rate of gas transport and increased work of breathing, persons with

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emphysema are often short of breath and cannot tolerate rigorous exercise well.

Chronic bronchitis, like emphysema, is more common in older adults, especially in individuals with a long history of cigarette smoking. It is clinically defined as chronic cough (“smoker's cough”), producing sputum and occurring on most days for at least a 3 month duration over at least 2 consecutive years. Whereas emphysema primarily affects the smallest airways, chronic bronchitis involves inflammation of the larger bronchi, due to the irritating effects of cigarette smoke or other environmental inhalants. The inflammatory process causes excessive mucus production, which is difficult to clear from the lungs. Further difficulties arise because the tiny, beating cilia covering the bronchi that normally help move the mucus upward are also damaged by smoking. The pooling of excessive mucus can block bronchi (the additional “obstructive” in COPD) and provide a nutrient-rich environment for bacterial infection.

Considering that an older immune system is not as efficient as it once was, and the cough reflex that helps clear excess mucus and aspirated food from the respiratory tract does not work as well, one can easily understand why an older smoker with chronic bronchitis is at increased risk for spreading inflammation and infection to the bronchioles and alveoli, which can lead to the development of pneumonia.

Collectively, the number of people who die each year of respiratory illnesses is considerable. COPD and other chronic lower respiratory tract diseases (e.g., asthma) represent the fourth leading cause of death in the United States; pneumonia and influenza collectively rank eighth on the list (National Center for Health Statistics, 2017). The World Health Organization estimates that 235 million people worldwide have been diagnosed with asthma and 383,000 deaths were attributed to asthma in 2015 (World Health Organization, 2017b). In 2015, COPD was the cause of three million deaths globally (World Health Organization, 2017c).

Gastrointestinal System One major function of the gastrointestinal system is to process incoming food so that nutrients can be absorbed into the body.

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The primary structural feature of this system is the digestive tract made up of the mouth, pharynx, stomach, small intestine, large intestine (or colon), rectum, and anus (FIGURE 7-3). This canal works like an assembly line, with each part having a specialized function in digestion. Attached to the digestive tract are exocrine glands, such as salivary glands, pancreas, and liver, which secrete substances to aid in digestion and absorption. Although aging in an otherwise healthy individual has minimal effects on the digestive system, many specific diseases of this system increase in frequency with advancing years. The age- related alterations in structure and function are discussed in descending order, starting with the mouth and proceeding to the rectum.

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FIGURE 7-3 The digestive system.

Food entering the mouth undergoes the initial stages of mechanical digestion (via chewing) and chemical digestion (via release of salivary amylase enzyme). In the mouth, teeth undergo perhaps the most visible changes with age, becoming yellowish-brown (because of exposure to coffee, cigarette

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smoke, and other staining agents) and worn on the surface (because of years of chewing, night grinding, and jaw clenching). Xerostomia or dry mouth, is a problem reported in old age and has several causes: decreased saliva production (often causing complications such as chewing, swallowing, and tasting), radiation therapy, adverse effects of medications, hormonal changes, and diabetes (American Dental Association, 2017). For more information about oral health issues in late life, see Chapter 12.

Once sufficiently chewed, food is swallowed through the complex coordination of muscles in the tongue, palate, pharynx, and esophagus. A common problem faced by older adults is dysphagia or difficulty swallowing, which often occurs as the result of a stroke. Dysphagia may be caused by weakness of tongue muscles, poor control of the swallowing reflex, or a lack of coordinated muscular action of the pharynx or esophagus. Severe dysphagia can cause aspiration of food into the larynx and farther down the respiratory tract, which can place a person at risk for indigestion and aspiration pneumonia. Treatment of severe cases of dysphagia often requires the expertise of a team consisting of a physician and speech and language pathologist.

In the stomach, the swallowed food is chemically digested by virtue of hydrochloric acid (gastric acid) and pepsin enzyme secretion, and is mechanically digested by the stomach's muscular churning action. In old age, the rate of gastric acid secretion decreases and incidence of peptic ulcers and gastritis (i.e., inflammation of the stomach lining) increases. These gastric problems in older adults may be a result of Helicobacter pylori, (or H. pylori, a bacterial infection), drug ingestion (e.g., aspirin, caffeine, alcohol), or genetically programmed changes that may occur with age. Chronic bleeding from a peptic ulcer or gastritis can result in iron-deficiency anemia and acute bleeding can place severe stress on the cardiovascular system.

The initial section of the small intestine, called the duodenum, receives partially digested food (or chyme) from the stomach and continues the process of digestion with the help of secretions from the liver and gallbladder (bile) and from the pancreas (digestive enzymes and bicarbonate-rich fluid). As chyme is further digested, nutrient molecules become small

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enough to be absorbed through the small intestine wall, a process that occurs primarily in the more distal parts of the small intestine (the jejunum and the ileum). Movement of chyme through the small intestine by peristaltic contractions of the muscular wall is fairly slow to allow sufficient time for nutrient absorption. Aging has surprisingly little effect on the small intestine's digestive function and smooth muscle contractility. With the possible exceptions of calcium, vitamin D, and iron, most nutrients are absorbed efficiently in the small intestine in healthy older adults.

The liver has several functions, some related to digestion and others not. It produces bile that is stored below in the gallbladder until its release into the duodenum. Bile is required for emulsification of fats in chyme. Without bile, fats would pass through the digestive tract without being absorbed. Storage of bile in the gallbladder can lead to its precipitation into solid stones or gallstones, a phenomenon that is increasingly likely as we age. Gallstones, in turn, can get lodged in the ducts that normally convey the bile to the duodenum, resulting at times in obstructive jaundice and inflammation of the gallbladder (cholecystitis) or pancreas (pancreatitis).

The liver also detoxifies many foreign and potentially damaging chemicals that enter or are produced within the body. Indeed, many medications given for disease and illness are broken down by the liver and are released either through the bile or in the bloodstream to be eliminated by the kidneys in urine. But, in old age, this detoxifying ability is diminished. This is particularly important to realize because it means that many drugs given to older adults remain in the body for longer periods of time. Thus, recommended dosages of many drugs for older adults are smaller than they would be for younger individuals. Failure to consider this leads to dangerous overdosing of medications for older adults. For more information on medication challenges in late life, see Chapter 10.

The remainder of the small intestinal contents (largely water and indigestible fiber) enters the large intestine or colon, an area of the digestive tract that is heavily colonized by a normal bacterial flora. The large intestine reabsorbs much of the remaining water and stores the feces until defecation. One

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common problem seen in older adults is diverticulosis, which is a development of small sacs where the large intestinal lining has herniated through the intestinal muscular wall. These herniations usually result from muscular spasms and increased intracolonic pressure associated with long-term diets low in fiber. These pockets or diverticuli can become impacted with feces, resulting in ulceration and inflammation of the mucosal lining (diverticulitis).

With age also comes decreased motility of smooth muscle in the large intestinal wall, which prolongs the time that feces are stored in the colon and rectum. This, in turn, causes excessive water reabsorption and hardening of feces, leading to constipation and, in extreme cases, intestinal obstruction. Conversely, some older adults experience fecal incontinence (the inability to control defecation), often due to the weakening of the external anal sphincter muscle and possibly due to lack of awareness (e.g., in late stage dementia). Fecal incontinence can be exacerbated when there is increased intrarectal pressure during episodes of diarrhea.

The small and large intestines, like most other parts of the body, are vulnerable to the ravaging effects of atherosclerosis. Blockage of arteries supplying the intestines with blood can result in ischemia (reversible tissue damage caused by oxygen depletion) and ultimately infarction (tissue death and breakdown). When infarction occurs, perforations can develop in the intestinal wall, allowing bacteria-laden feces to spill out into the normally sterile peritoneal cavity, causing severe inflammation (peritonitis), a life-threatening condition.

Finally, the large intestine is susceptible to cancer as well. In the late 1940s, colorectal cancer was the most common form of cancer in the United States (Siegel, DeSantis, & Jemal, 2014). The prevention, screening, and treatment of this type of cancer has substantially reduced both incidence and mortality rates. Colorectal cancer is now the third leading cancer leading to death in the United States (Siegel et al., 2017).

Genitourinary System The genitourinary system consists of the kidneys and the complete urinary tract. The paired kidneys serve two principal

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yet overlapping functions:

Excretion of waste products from the body Maintenance of homeostasis (stability) in the fluid compartments of the body such as plasma and interstitial fluid

Excretion of Waste

Remarkably, each kidney only weighs about 5 ounces, yet jointly receive about 20% of the cardiac output, which illustrates their importance in carrying out these clean-up tasks. If they fail to function, nitrogenous waste products (e.g., urea) build up in the bloodstream leading to imbalanced levels of water, electrolytes, or acids, which alter normal physiologic processes. One would expect organs of such importance to have considerable functional reserve so that they could make necessary compensations when damaged in any way; and for the most part, this is true. Consider the nephrons, the microscopically sized functional units of the kidneys that filter blood and then “choose” which substances of the filtered fluid to excrete and which substances to place back in the bloodstream. Researchers have studied nephrons in the aging population and have only determined that the loss of nephrons is associated with a decreased kidney filtration rate (Aleksandar et al., 2016).

Nonetheless, the kidneys of older adults have a more difficult time responding to any added metabolic stressor on the body when nephrons become less efficient and fewer in numbers. Like the other organs discussed, older kidneys work well under normal conditions but have reduced tolerance for disease, whether originating from the kidneys themselves or from other organs. This is why older adults are more likely to experience acute and chronic renal failure (conditions in which toxic metabolites build up in the body because of an inability of the kidneys to remove them at a sufficient rate) than younger individuals.

Like the liver, the kidneys help eliminate medications and their by-products from the body. The decreased functional reserve capacity that comes with age makes it more difficult for kidneys to excrete drugs efficiently. Thus, to prevent overdosing

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medications, older adults typically require smaller drug dosages than do younger individuals. Maintaining Homeostasis in Fluid Compartments

One of the major roles of the kidneys is to maintain water balance in the body. Indeed, the amount of water in bodily fluids such as the blood, the interstitial fluid, and the intracellular fluid determines the concentrations of all substances dissolved in those fluid compartments. Therefore, to maintain levels of elements (e.g., sodium, potassium, calcium) and other vital components within the required (i.e., healthy) ranges of concentration, the kidneys must regulate the rate of water removal from the body.

Severe water loss or dehydration can result from excessive sweating or inadequate fluid intake. Prolonged dehydration can cause increased concentration of bodily substances to dangerously high levels, if not for the ability of the kidneys to respond by producing smaller volumes of highly concentrated urine, thus minimizing the amount of water lost. On the other hand, when someone is overhydrated, the kidneys respond by producing large volumes of diluted urine.

The ability of the kidneys to regulate the concentration of bodily substances according to need diminishes with age. For this reason, older adults are more likely to become dehydrated, especially when confusion, immobility, or fear of urinary incontinence prevents them from drinking adequate amounts of liquids. Dehydration may be further exacerbated by the overuse of diuretics, which are medications used for congestive heart failure and hypertension to increase urinary output.

Other age-related changes in the genitourinary system pertain to the structures required for urinary collection and removal, that is, the ureters, urinary bladder, and urethra (FIGURE 7-4). Normally, urine produced by the kidneys flows through the ureters to be temporarily stored in the urinary bladder. As the bladder fills with urine, its walls stretch out. The expanding bladder compresses the ureteral openings, preventing a reflux of urine in the bladder back into the ureters. In addition, a smooth muscle sphincter at the urethral opening prevents urine in the bladder from entering the urethra. As fluid pressure in the

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bladder rises, the internal urethral sphincter opens up and urine enters the proximal urethra. However, another more distal and voluntary muscle sphincter located in the pelvic floor must relax before urine can exit through the urethra. Thus, although the release of urine, called micturition, is made possible by an involuntary reflex, we nonetheless have voluntary control over it under normal conditions.

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FIGURE 7-4 The urinary system.

The loss of control of micturition, or urinary incontinence, is not uncommon among older adults. Indeed, 59% of individuals living in institutions may experience this

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embarrassing and distressing condition (Jerez-Roig, Santos, Souza, Amaral, & Lima, 2016). Postmenopausal women are prone to urinary incontinence because lowered estrogen levels cause the skeletal muscles of the pelvic floor and smooth muscles of the urethra to weaken. Women who have had multiple pregnancies are particularly susceptible to incontinence and may involuntarily urinate whenever intra-abdominal pressure rises, such as when coughing, sneezing, or laughing, a common condition known as stress incontinence.

In older men, urinary incontinence is often caused by an enlarged prostate gland. The prostate gland, which produces some components of semen, is wrapped around the beginning section of the urethra. It enlarges as a man ages, which in turn can partially or completely obstruct the urethra. This enlargement is either benign (noncancerous) or malignant (cancerous) resulting in prostate cancer. In either case, the urinary bladder must contract more forcefully to eliminate urine. Over time, the bladder can become distended (expanded) and its muscular wall can weaken, ultimately leading to incontinence. As a result, distention increases the chance of urinary tract infection and kidney damage due to a buildup of fluid pressure. To avoid such complications, surgery is often performed to remove the part of the prostate gland blocking the urethra.

In addition to incontinence, nocturia, or frequent urination at night, is a problem for older adults. Individuals having to get up frequently at night to urinate should be evaluated for urinary problems. Contributing factors are known to include adverse effects of medications and chronic conditions (e.g., cardiac disease, diabetes, obesity, sleep disorders; Burgio et al., 2010).

Musculoskeletal System Musculoskeletal dysfunction is a major cause of disability in older adults altering mobility, fine motor control, and the mechanics of respiration. It occurs as a result of a decline in muscle mass (sarcopenia), which causes overall strength to deteriorate. Other changes that take place within the musculoskeletal system include decreased reflexes, loss of cartilage and thinning of the vertebrae, decreased calcium absorption, joint cartilage deterioration, and deterioration of the

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extrapyramidal system. As a result of these changes, older adults are more prone to falls (and thus fractures), respiratory infections, and the general physiologic decline that accompanies an increasingly sedentary lifestyle, which can be the result of fear of falling (again).

One of the most significant changes in the aging skeleton is osteoporosis. Defined as a reduction in bone mass and bone density, this condition predisposes an individual to fractures, especially in the vertebrae, proximal femur, and distal radius. In the United States, an estimated 10 million people have osteoporosis and 44 million have lower bone mass thus increasing risk of fractures (National Osteoporosis Foundation, 2015). Osteoporosis is responsible for approximately two million fractures per year, which accounts for approximately $19 billion in healthcare costs annually (National Osteoporosis Foundation, 2015). Osteoporosis- related fractures are predicted to increase to three million fractures by 2025, with annual healthcare costs rising to $25.3 billion (National Osteoporosis Foundation, 2015).

Important risk factors for osteoporosis include estrogen depletion (in postmenopausal women), calcium deficiency (exacerbated in older adults because of decreased intestinal absorption of calcium), decreased bone mass, physical inactivity, testosterone depletion (in males), alcohol dependence, cigarette smoking, and tobacco use (International Osteoporosis Foundation, 2015). The loss of bone mass, combined with fluid loss within the intervertebral discs, and reduction of cartilage causing stiffening of the vertebrae results in decreased height (Vergroesen et al., 2015). Collapse or severe wedging of the vertebrae causes the characteristic appearance of kyphosis, an exaggerated convex curvature of the upper spine leading to a “hunchbacked” posture. A concomitant deformity of the rib cage can alter the normal mechanics of breathing.

Osteoarthritis, also called degenerative joint disease (DJD), is the most common chronic joint condition, affecting more than 30.8 million Americans (Cisternas, et al., 2016). Its prevalence increases with age, affecting about 2% of adults under the age of 45, but up to 80% of people older than age 75 (Berger, et al.,

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2011). The disease is so common in older adults that for many years it was believed to be a normal aspect of aging. However, histological studies have revealed clear differences in joint and cartilage structure between persons with osteoarthritis and individuals with healthy joints. Osteoarthritis is marked by ulceration and destruction of joint cartilage, eventually leading to exposure and destruction of the underlying bone. The normal cushioning effect of cartilage is lost, causing bone to rub on bone. As might be expected, weight-bearing joints are the most commonly affected (e.g., knee and hip joints), with obesity being a primary contributing risk factor. Osteoarthritis is the most common cause of the need for total knee and hip replacements, but other frequently used movable joints such as the proximal and distal interphalangeal joints of the fingers are also commonly affected by DJD (Arthritis Foundation, 2017).

Inflamed joints are marked by pain, swelling, and decreased range of motion. Other less common forms of arthritis that occur more frequently with age include rheumatoid arthritis and gout. Rheumatoid arthritis is an autoimmune disease process where antibodies attack healthy joint tissue causing inflamed joints (Arthritis Foundation, 2017). Gout is a condition where uric acid crystals build up in joint spaces as well as in the connective tissue causing pain and swelling in the joint (Arthritis Foundation, 2017). With these disease processes, it is critical to differentiate and diagnose correctly as treatment varies.

Skeletal muscle undergoes changes as well. The number of skeletal muscle fibers (cells) decreases with age, although the rate of decline varies from muscle to muscle (Brunner, Schmid, Sheikhzadeh, Nordin, Yoon, & Frankel, 2007). For example, little change is noted in the diaphragm, the primary breathing muscle that never relaxes for more than a few seconds, whereas muscles used less frequently such as those of the lower extremities exhibit greater rates of muscle fiber loss. Other changes in skeletal muscle are microscopic, including a decrease in muscle fiber size (atrophy) and capillary supply, an increase in the deposition of lipofuscin and adipose (fat) cells, and a spotty loss of the motor neuron innervation (muscle stretching). Microscopic changes create a gradual decline in

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muscle strength and efficiency over time, although change may vary among muscle groups. It cannot be overemphasized that regular physical training can improve muscle strength and endurance, even in very old adults (Mian, Baltzopoulos, Minetti, & Narici, 2012). This fact, coupled with the benefits of exercise in maintaining bone strength and cardiovascular fitness, argues for a physician-approved exercise regimen for almost everyone.

Nervous System The central nervous system (CNS) is the principal regulatory system of the body and is dependent on other systems to function effectively, just as these other systems depend on the CNS for oversight. For example, cerebral blood flow declines with age and can cause complications with the circulatory system, which can lead to blood pressure problems and potentially a stroke (Timiras, 2007b).

The CNS consists of the brain, brain stem, and spinal cord. It regulates and monitors peripheral activities via the cranial nerves, which are the communication networks that form the peripheral nervous system (PNS). The neuron is the basic functional unit of the nervous system, capable of transmitting electrochemical impulses (or messages) over its cell body and cell extensions (the axon and dendrites). Neurons form functional boundaries, or synapse, with other neurons and with target structures such as muscles and glands.

The nervous system of an older adult loses nerve cell mass and shows some brain atrophy. Nerve cells and dendrites decline in number, which slows transformation of information, shortens reaction times, and weakens reflexes. Brain weight is said to decrease with age, but this does not seem to interfere with individual thought processes (Erickson, Gildengers, & Butters, 2013).

The nervous system utilizes several different neurotransmitters to transfer signals from neurons through synapses. Some neurotransmitters are characterized as excitatory (e.g., stimulates signals in neurons) and some are inhibitory (e.g., slows down signals in neurons). The well- characterized neurotransmitters include acetylcholine,

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dopamine, gamma-aminobutyric acid (GABA), and serotonin. Acetylcholine is mainly responsible for the contraction of skeletal muscles, regulating cardiac rhythms, and encoding new memories. Dopamine is responsible for regulating emotional responses as well as movement. GABA is an inhibitory neurotransmitter that aids in reducing activity with neurons during stressful events. Serotonin is a chemical neurotransmitter that regulates mood, appetite and digestion, memory, and behavior such as depression. Individual neurons may store and release more than one type of neurotransmitter. The smooth functioning of the nervous system relies on balanced activity among the various neurotransmitters. In later life, neurotransmitter dysfunction has likely more to do with a loss of this delicate balance than with an absolute loss of any one particular neurotransmitter. Neurotransmitters play a role in various disease processes such as depression (GABA and serotonin), Parkinson's disease (dopamine), and Alzheimer's disease (serotonin), where there is an increase or decrease responses within the neurons. Memory

Memory loss associated with dementia is different from age- associated memory loss. Although most mental functions do not decline with age, mild loss of memory and recall for recent events is quite common, whereas long-term memory generally remains intact. Early stages of dementia commonly mimic normal aging in relation to memory loss (Caddell & Clare, 2013). Decline in memory loss varies with each individual as the disease process progresses. For more information on memory, see Chapter 8. Intelligence

Some aspects of intelligence change with age. Specifically, crystallized intelligence (the ability to apply previously learned concepts to new tasks) can continue to increase as we age, perhaps because a lifetime of experiences and exposures provide a broader knowledge and skill base to apply to problems. In contrast, fluid intelligence (the ability to organize information in new ways and generate novel ideas or hypotheses about phenomena) decreases with age. Older adults frequently score

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lower on timed tests of cognitive performance because they require more decision-making time and favor a slow, deliberate approach to tasks (Szwabo, 2006). Although components of intelligence change with age, overall intelligence measured by an intelligence quotient (IQ) remains fairly stable throughout adult life in well elders. For more information on intelligence, see Chapter 8. Motor Function

Gradual impairment of locomotor function (physical activity) greatly contributes to disability in older adults. Chief symptoms include the slowing of fine motor tasks, diminished postural reflexes, and decreased gross motor skills. Fine motor skills consist of movement in the smaller muscle movements such as buttoning clothing and other simple tasks conducted by the hands and fingers. Postural reflexes are related to maintaining posture through balancing during movement. Gross motor skills consist of the action of larger muscles to make movement, such as walking or lifting something. The confident, long stride of youth morphs into a more hesitant, broad-based gait as people age. Such deficiencies in motor skills are attributed primarily to decreased functioning in the motor control centers of the brain such as the basal nuclei, cerebellum, and cerebral cortex. However, motor control is also influenced by diminished sensory input, including diminished proprioception (sense of body position), vestibular sensation (sense of head movement), and kinesthetic sensation (sense of body movement) as well as the five commonly known senses. These functions decrease slightly in typical aging. Interestingly, many of the characteristics of the stride of a frail elder such as tentative, shuffling steps, and stooped posture are similar to characteristics experienced by individuals with Parkinson's disease. The only difference is that individuals with the disease show more severe impairments. These changes in balance and movement place older adults at risk for falls. Notable is that motoric decline may be more significantly associated with decreased activity level rather than aging per se (Buchman, Boyle, Wilson, Bienias, & Bennett, 2006). For more information about functional performance, see Chapter 9.

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Sleep

The aging process brings about notable changes in pattern and quality of sleep. Approximately, half of the older adult population report difficulty with falling or staying asleep (Crowley, 2011). The total amount of time spent sleeping changes little over the course of a lifetime, but as one ages, episodes of sleep (especially deep sleep) are shorter and more frequent. Feeling tired during the day and napping is a constant reminder that quality of sleep is declining. Causes of sleep disturbances experienced by older adults include insomnia, neurological conditions such as restless leg syndrome, breathing disorders, pain, medical diagnosis, and possibly medications (Crowley, 2011). Disturbances tend to affect the deepest levels of sleep (the most rejuvenating forms of slumber) among older adults. For more information about sleep performance, see Chapter 9.

Endocrine System Like the nervous system, the endocrine system is a principal regulatory system in the body. It helps control several aspects of physiology, such as body temperature; basal metabolic rate; growth rate; carbohydrate, lipid, and protein metabolism; stress responses; and reproduction. Dysfunction within this system could have widespread ramifications for health and well-being. A few of the many age-related changes to the endocrine system are highlighted in this section.

The endocrine system is a collection of glands spread throughout the body that produce and secrete chemical messengers called hormones into the bloodstream. Hormones have physiologic effects on specific target organs throughout the body. The cells of target organs have protein receptors that bind to a specific hormone. This binding initiates a cascade of metabolic events within the target cell that mediate the hormone's effects. That is, when released in the bloodstream, receptors in the target cell will receive and activate the hormone by binding to the receptor protein of the cell or diffusing hormones through plasma membranes.

There is a hierarchical control of the release of most hormones, which begins in the CNS (FIGURE 7-5). Neural

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activity from higher centers in the CNS is relayed to the hypothalamus, a small but extremely important structure that, in turn, controls activity of the pituitary gland by releasing hormones that stimulate or inhibit its hormonal production and release. The pituitary gland, under the influence of these higher control centers, releases a battery of hormones that have selective stimulatory effects on glands such as the thyroid, adrenal gland, and gonads (ovaries and testes). However, it should be emphasized that even the structures at the top of this endocrine hierarchy are influenced by “lower” events. For example, the thyroid gland is stimulated to release thyroid hormone in response to the sequential release of thyrotropin- releasing hormone (TRH) from the hypothalamus and thyroid- stimulating hormone (TSH) from the pituitary gland. But, as its level in the blood increases, the thyroid hormone “turns off” further production of TRH and TSH in the higher centers. In effect, the endocrine system operates under a system of checks and balances so that under normal conditions the appropriate levels of all hormones are maintained.

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FIGURE 7-5 The hierarchy of control over the endocrine system.

The thyroid hormone released from the thyroid gland has many physiologic effects, such as regulation of tissue growth and development (particularly of the skeletal and nervous systems), regulation of the basal metabolic rate (BMR) by promoting oxygen consumption and heat production in most tissues (i.e., a calorigenic effect), enhancement of the effects of the sympathetic nervous system (or fight-or-flight response), increased mental alertness, and possibly regulation of cholesterol metabolism. As one ages, the level of thyroid hormone secretion declines. However, this decrease is matched by a decline in its rate of removal from the bloodstream so that, overall, levels change little over the years. Furthermore, aging per se does not appreciably affect the increased release of TRH, TSH, or thyroid hormone required in times of greater need. However, several characteristics of older adults such as a reduced metabolic rate, suboptimal regulation of body temperature, decreased effectiveness of the fight-or-flight response, reduced mental alertness, and increased incidence of cholesterol-related atherosclerosis are also symptoms of reduced thyroid activity (hypothyroidism). Thus, it is possible that the age-related changes in thyroid function could result from inadequate responses of target cells to the thyroid hormone rather than from direct damage to the thyroid gland.

The paired adrenal glands consist of an outer layer called the adrenal cortex and an inner section called the adrenal medulla (which, from a functional standpoint, is more aptly considered part of the sympathetic nervous system, and thus is not discussed here). The adrenal cortex produces a number of corticosteroid hormones such as cortisol, which helps the body adapt to stress; aldosterone, which helps the body conserve sodium and thus water; androgens, which have masculinizing effects; and estrogens, which have feminizing effects. The latter two hormones, whose levels decline with age, supplement the action of testosterone and estrogen released from the testes and ovaries, respectively. The loss of estrogen production from postmenopausal ovaries appears to upset the androgen–estrogen balance in favor of androgens produced in the adrenal gland. This might explain the mild masculinization of both sexes.

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Aldosterone is a hormone that stimulates the reabsorption of sodium ions from renal tubules back into the bloodstream, which osmotically draws water back in as well, thus increasing blood volume, and therefore regulating blood pressure when needed. Aldosterone levels fall as one ages, impairing an important component of blood pressure regulation. Although the aldosterone mechanism is just one of many ways that increase blood pressure, its loss may bring the body one step closer to disruption of homeostasis.

Cortisol, the quintessential stress hormone, is released into the bloodstream during prolonged periods of physical or psychological stress. It is a catabolic hormone whose function is to mobilize the body's energy reserves, increasing blood levels of glucose, fats, and amino acids during times of illness, physical injury, or emotional distress. In addition, baseline cortisol release (in conjunction with release of the hormone glucagon from the pancreas) in the absence of stress helps prevent blood glucose levels from falling dangerously low during sleep and in between meals. High levels of cortisol can place older adults at higher risk for CVD, diabetes, weight gain, and sleep issues (Manenschijn et al., 2013). Low levels of cortisol place older adults at risk for insomnia, weight loss, inflammation, and various other disease processes (Cohen et al., 2012).

As was true of thyroid hormone, cortisol levels remain normal well into old age, because of a balance between the hormone's decreased production and its decreased excretion. In addition, stress-induced increases in cortisol release are not affected by aging. However, it appears to take older adults longer to reestablish normal blood cortisol levels following a stressful event. A persistently elevated cortisol level may actually have a negative impact on the health of older adults. Some of the well-documented effects of chronically high blood cortisol levels include hyperglycemia (excessively high blood glucose level), hypertension (high blood pressure caused by the aldosterone-like effects of cortisol), and immunosuppression (increased susceptibility to infection and cancer). It is plausible that elevated cortisol responses to stress might also exacerbate

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concomitant DM, hypertension, and infectious disease in older adults (Manenschijn et al., 2013).

Unlike in the thyroid gland, adrenal cortex, and gonads, hormone release from the endocrine cells of the pancreas is not controlled by the hypothalamus and pituitary gland. Instead, the two major hormones produced by the pancreas, insulin (which decreases the blood glucose level) and glucagon (which increases the blood glucose level), are released at various rates based on blood glucose levels. Deficient insulin action causes diabetes mellitus (DM), a systemic condition marked by hyperglycemia and long-term complications such as diabetic retinopathy, renal failure, nerve damage, atherosclerosis, and gangrenous infection—a peripheral vascular disease often necessitating amputation of all or part of the leg.

Non-insulin-dependent diabetes mellitus (NIDDM) or type II diabetes is a type of diabetes mellitus that increases in frequency with age and accounts for about 90–95% of all cases of diabetes. It appears to be caused by deficient target organ responses to the effects of insulin—the level of insulin itself is actually decrease or increased (Wilcox, 2005).

In 2015, the prevalence of diabetes in the United States was 30.3 million people (9.4% of the total population). Among Americans aged 65+, 12% are both diagnosed and undiagnosed. Diabetes is so prevalent that in 2015, it was the seventh leading cause of death in the United States (American Diabetes Association, 2015). Risk factors that increase complications with diabetes consist of high blood pressure, physical inactivity, high cholesterol, smoking, obesity (Centers for Disease Control and Prevention, 2017a). Individuals diagnosed with diabetes and hospitalized in 2014 were discharged with more serious diagnosis such as strokes, CVD, and lower extremity amputations (Centers for Disease Control and Prevention, 2017b).

Immune System The ability of our bodies to remain free of infections and cancer requires that the WBCs in our immune system are able to distinguish “self” cells (i.e., our own healthy cells) from “nonself” cells (i.e., invading microorganisms and parasites or

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structurally altered cancer cells). To appreciate the enormity of this task, think about the thousands of different types of organisms that can invade the body, each of which must be specifically recognized by the immune system as foreign and destroyed without damaging the integrity of our own tissues in the process. Similarly, imagine the countless number of precancerous cell types, each of which may differ from normal cells in only subtle ways that need to be recognized and destroyed by the immune system on a regular basis. Indeed, when it is working well, the immune system is to be marveled at for its accuracy. But, as is true of most systems, age can take its toll. A discussion of the most important aspects of the immune response is followed by a review of those age-related changes in immunity that have implications for health and well-being.

To be immune to an infection implies being protected from it. The development of immunity to a particular infectious organism, however, usually requires initial exposure to it, which in turn often causes mild illness. Nonetheless, on recovery from the sickness, the individual is immune to subsequent infection and illness from that organism; the body has developed an “immunological memory” (sometimes called adaptive immunity) so that it can act more swiftly and effectively the next time it is exposed to the same invader (Iwasaki & Medzhitov, 2010).

The development of this immunological memory occurs by one of two general processes: the humoral- and cell-mediated immune responses. The former process produces proteins called antibodies, which circulate through the blood (or “humor”) and specifically bind to the foreign organism, and the latter process activates WBCs called T-lymphocyte “killer cells,” which directly destroy the invading organism. Lymphocytes play a critical role in the development of immunity to infections and cancer. Unfortunately, it is these lymphocytes whose function most noticeably diminishes with age. During the aging process, individuals have a slower inflammatory response due to the decline of killer cell function to fight off bacteria or fungal infections (Hazeldine & Lord, 2013).

The age-related decline of immune system functioning gives rise to three general categories of illness that preferentially

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afflict older adults: infections, cancer, and autoimmune disease. The overall incidence of infectious disease rises in late adulthood. Infectious diseases, particularly prevalent among the older adults, are influenza, pneumonia, tuberculosis, meningitis, and urinary tract infections. Cancer increases in prevalence with age, as well. Leukemia, lung, prostate, breast, stomach, and pancreatic cancer occur most frequently (American Cancer Society, 2017). The increase with age may be caused in part by altered immune surveillance of precancerous and cancer cells that also comes with age. Several components of the immune system play roles in cancer protection, including natural killer cells. Both the number and function of natural killer cells in animal studies decline with age, which may partly explain the rising incidence of cancer in older adults (Hazeldine & Lord, 2013).

Autoimmune diseases are also more common as people age. These diseases are marked by the mistaken immunological destruction of the body's own cells. Prominent examples of autoimmune diseases affecting older adults include rheumatoid arthritis, Hashimoto's thyroiditis, lupus, and chronic hepatitis. In autoimmune diseases, the body loses the ability to distinguish “self” (body's own cells) from “non-self” (foreign cells). Tolerance to our own tissues develops early in life (during development of the immune system), when the thymus gland selects out and eliminates those clones of T-cells programmed to destroy our own tissues—a process called clonal deletion. However, with the slow, age-related destruction of the thymus gland, the body may lose the ability to detect and destroy these potentially self-harming T cells. Indeed, with aging comes an increased level of autoantibodies which target the body causing autoimmune disorders (Elkon & Casali, 2009).

Integumentary System The integumentary system consists of the skin and all of its accessory structures such as hair, nails, sebaceous (oil) glands, and eccrine (sweat) glands. Because skin covers the body, changes in its appearance are the most visibly noticeable of all the changes occurring in the aging body. Skin consists of three major layers: the epidermis, dermis, and subcutaneous layers.

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This section focuses on changes in the layers due to age and the consequences of those changes for the structure and function of the integumentary system (FIGURE 7-6).

FIGURE 7-6 Change in appearance of skin with aging. The same woman is shown at (left) age 19 and (right) age 95.

The epidermis is a multilayered sheet of cells called keratinocytes, which are named for their production of keratin, a fibrous protein that gives the epidermis strength. Interspersed among the keratinocytes are melanocytes, which produce the melanin pigment that browns the skin, and dendritic (or Langerhans) cells, which prevent the development of skin cancers, ingest microorganisms, and stimulate WBCs called lymphocytes (Romani et al., 2006). The epidermal cells rest on a thin membrane, which separates the epidermis from the underlying dermis. This membrane is normally undulated (wavelike movement), which helps hold the two layers together. However, with age, the membrane flattens out, making the skin more vulnerable to shearing forces, abrasion, and blister formation (FIGURE 7-7; Tobin, 2017). Due to everyday wear and tear on the skin, epidermal cells must be continuously replaced with new cells that divide by mitosis in the deepest layers of the skin. The new cells slowly get pushed up through

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the epidermis and ultimately are shed from the skin, a process that takes about 28 days.

FIGURE 7-7 Changes in the structure of skin with aging. Note that older skin has (1) a thinner epidermis, (2) a flatter basement membrane, (3) fewer melanocytes and Langerhans cells, (4) a diminished dermal

blood supply, and (5) a thinner subcutaneous fat layer.

Thus, our epidermis is completely replaced every month. The skin regenerations, however, decrease by 50% between ages 30 and 70, which increases the time during which individual epidermal cells are exposed to carcinogens (i.e., cancer-causing agents) such as ultraviolet light from the sun (Tobin, 2017). Furthermore, the number of melanocytes (and therefore the amount of protective melanin pigment) decreases with age, making ultraviolet light more dangerous. The combination of fewer macrophage-like dendritic cells with fewer melanocytes helps explain why older adults are particularly prone to developing skin cancer.

The dermis is a thick layer of loose connective tissue well supplied with blood vessels, lymphatic vessels, nerves, and accessory organs such as sweat glands, sebaceous glands, and hair follicles. The predominant cells found in the dermis are fibroblasts, mast cells, and macrophages. Fibroblasts produce and release collagen and elastin, which gives skin its strength and elasticity. Mast cells release substances that mediate the inflammatory response following injury to the skin.

The rich supply of blood vessels in the dermis provides oxygen and nutrients as well as an efficient mechanism for regulating body temperature. When the body is overheated,

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blood flow to the dermis increases so that heat can be radiated through the skin. This mechanism, together with the action of sweat glands, allows for the release of large amounts of heat in a short period of time.

The amount of collagen and elastin in the dermis decreases with age, accounting for the thinning and wrinkling of skin on older adults. Loss of collagen makes the skin more susceptible to wear and tear, while loss of elastin causes skin to lose its resilience. The density of the dermal blood supply also decreases with age, blunting outward signs of inflammation in aging skin. This is noteworthy because older adults often lack some of the early warning signs of tissue injury (e.g., redness and swelling) from, for example, sunburn, bacterial infection, or skin cancer. The diminished blood flow to the dermis also impairs wound healing and, together with poorly functioning sweat glands, makes older adults especially vulnerable to overheating syndromes such as heat stroke.

The dermis also contains sensory receptors, which make the skin sensitive to vibration, pressure, and light touch. The gradual loss of these receptors due to age decreases the tactile sensitivity of the skin and increases the threshold for pain stimuli.

The subcutaneous layer of the skin is largely adipose (i.e., fat) and loose connective tissue. This fat layer provides cushioning and thus protection to the underlying tissues. It also serves to insulate the body from rapid heat loss or gain. With age comes a thinning (or atrophy) of this layer, particularly noticeable in the face and on the backs of the hands. Loss of the fat pad on the sole of the foot can increase trauma when walking and exacerbate other foot conditions.

Chronic overexposure to sunlight is the biggest scourge of aging skin, as it is directly correlated with wrinkling, coarseness, and irregular pigmentation of the skin. It also contributes to the development of lesions such as skin tags (loose fibrous tissue), and seborrheic keratoses (precancerous skin growths). More important, the ultraviolet component of sunlight predisposes people to three major forms of skin cancer: basal cell carcinoma, squamous cell carcinoma, and malignant melanoma.

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Basal cell carcinoma (a localized lesion that generally does not spread) is the most common form of skin cancer in the United States (American Cancer Society, 2017), followed by squamous cell carcinoma (a lesion found in the epidermal layer of the skin; American Cancer Society, 2016). An estimated 5.4 million diagnoses for these treatable lesions occur each year (American Cancer Society, 2016). Malignant melanoma is one of the most common cancers diagnosed, making up about 1% of skin cancers and causing the most skin-related cancer deaths (American Cancer Society, 2017). In 2017, approximately 87,110 cases of melanoma were diagnosed (American Cancer Society, 2017). Unlike basal and squamous cell carcinomas, melanoma can metastasize (i.e., spread) if not treated. Clearly, sun-induced changes damage and accelerate the aging of skin. Thus, in order for skin to look great at age 80, consistent use of protective hats and clothing and sunscreens with a sun protection factor of 30 (SPF-30) or higher is required (Farberg, Glazer, Rigel, White, & Rigel, 2017).

Whereas excessive exposure to sunlight has adverse effects on the skin, some exposure is still needed to stimulate the production of vitamin D in the skin. Vitamin D is needed to stimulate sufficient absorption of calcium from the small intestines into the bloodstream. Approximately 5–30 minutes of sun exposure to the face, arms, legs, or back without sunscreen between 10 a.m. and 3 p.m. twice a week stimulates sufficient vitamin D production (Holick, 2007). However, UV-B light exposure decreases the farther a person lives from the equator. People living more than 42° of latitude north or south of the equator (e.g., northern states in the United States and Tasmania in the south) do not receive sufficient sunlight during the winter months to produce enough vitamin D (Holick, 2007). Although vitamin D can be stored in adipose tissue, individuals living far from the equator must nonetheless be sure that they have adequate dietary intake of vitamin D during those months. Scientists have not yet determined if there is a minimal amount of sun exposure that stimulates sufficient vitamin D production without increasing the risk of skin cancer (National Institutes of Health Office of Dietary Supplements, 2016). Hair

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Perhaps, the most striking changes to the integumentary system are the graying, thinning, and loss of hair. Hair follicles are specialized epidermal cells packed into cylinders rooted in the dermis. Hair growth is made possible by mitotic cell divisions at the base of the follicle. Hair color is based on the amount of melanin pigment located within the specialized cells. Blonde, brown, and black hairs have successively higher concentrations of melanin. With advancing years, the number of hair follicles decreases. The remaining follicles grow at slower rates than before and contain lower concentrations of melanin, which causes the hair to become thin and white. These changes have more than a cosmetic effect. They also reduce the hair's protective ability to screen the skin on the scalp from the damaging effects of sunlight.

Sensory Organs Each of the five senses undergo age-related changes which may inhibit functioning. Vision

Changes in vision are due to alterations to structural components of the visual system (FIGURE 7-8). The cornea and the lens are the principal focusing structures in the eye; they refract (or bend) incoming light rays so that images can be brought into focus on the retina in the back of the eye. Both the cornea and lens undergo predictable changes. A gradual loss of cones and rods are associated with the aging process, and with these losses, visual acuity decreases. The lens also becomes thicker and more opaque, resulting in blurry vision, night vision issues, and sensitivity to glare. These changes in the lens can lead to the development of cataracts, often described as a cloudy lens.

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FIGURE 7-8 The structure of the eye and its age-related changes.

The lens is controlled by ciliary muscles which regulates curvature. The muscle contracts when focusing on near objects and adjusting to changes in lighting, causing the lens to become rounder (a process called accommodation). When the elasticity of the lens decreases and the muscles stiffen, the ability to focus on near objects becomes difficult (a condition called presbyopia). In response, corrective lenses are prescribed to aid in improving visual performance for daily tasks.

Several conditions of the eye are associated with old age. Cataracts are considered the condition most aligned with senescent changes (i.e., if people live long enough, they will get cataracts). Other visual impairments in old age include macular degeneration, glaucoma, and diabetic retinopathy. For more information on vision related to functional performance, see Chapter 9. Hearing

Hearing impairment is the most common condition in older adults. It affects about one-third of adults 65–70 years old and half of adults over 70 years old (National Institute on Deafness and other Communication Disorders, n.d.). Hearing and interpreting sounds is a multistep process that converts sound waves (air pressure) into nerve impulses (FIGURE 7-9).

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FIGURE 7-9 The auditory system.

Progressive hearing loss experienced by older adults is called presbycusis, the most common form of sensorineural hearing loss. Men are affected more than women, and urban dwellers sustain greater losses than persons living in rural areas (suggesting significant effects from chronic exposure to environmental noise). The type and degree of loss is more severe for high-frequency sounds than for low-frequency sounds. Specifically, the loss of high-frequency hearing makes it more difficult to hear consonants. Vowel sounds, on the other hand, are lower pitched and can still be heard fairly well. This selectivity suggests that the origin of the problem is in the inner ear and/or the nerve pathways to and through the brain.

Overall, changes in hearing can cause speech to sound muffled. To compensate, some people resort to lip reading; this is easier to do for consonant sounds than for vowel sounds. Hearing conversations in a crowded room can also be difficult for older adults, not only because of the presbycusis, but also because older adults have a diminished ability to localize sound and to ignore those sounds that are deemed less important. For more information on hearing related to functional performance, see Chapter 9.

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Taste

Sensitivity to taste declines with age, as well. The ability to taste occurs with the activation of taste cells, which are clustered together in taste buds on the tongue and in other regions of the oral cavity. Nerves transmit information about taste to the brain stem and higher centers in the brain.

The perception of taste can be affected by many factors such as medications, an increase or decrease in saliva production, oral disorders, and chronic disease (Boyce & Shone, 2006). Decreased taste has been assumed to be linked to a decrease in taste buds with age, but studies have discovered no such correlation (e.g., Feng, Huang, & Wang, 2014). However, it is clear that older adults experience difficulty gauging the intensities of tastes and identifying specific tastes, such as salty, when in a mixture of flavors. Taste sensations undergo different changes during the aging process as the ability to distinguish salty foods decreases but tasting sweets is maintained (Methven, Allen, Withers, & Gosney, 2012). For more information on taste related to functional performance and oral health, see Chapters 9 and 12. Smell

Another functional decline with important ramifications on overall functioning is the ability to smell, a condition known as hyposmia (decrease in smell sensation) or anosmia (complete loss of smell sensation). Similar to taste, the degree of impairment varies with the particular odor, and the ability to identify individual odors in a mixture is more difficult with age. Men are more affected by loss of smell than women.

Smell is made possible by the activation of sensory cells in the upper mucosal surface of the nasal cavity, which pass the sensory information through the bony roof into the olfactory bulb at the base of the frontal lobe. From there, the information is processed and relayed through the olfactory tract to higher brain centers. The decline in the numbers of mucosal sensory cells and olfactory bulb relay cells in later life account for the decreased sensitivity to smell.

Because of the crucial role played by smell in distinguishing the tastes of different foods, hyposmia makes

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foods less desirable, causing a decreased appetite and irregular eating habits. As a result, older adults can experience weight loss and malnutrition (Leopold, Cairns, Holbrook, & Noell, 2016). Moreover, the inability to smell can place an individual at risk by impairing the ability to detect noxious or toxic odors, spoiled food, or a fire within the home (Leopold et al., 2016). For more information on smell related to functional performance and oral health, see Chapters 9 and 12.

Driving becomes a concern as individuals age. As discussed throughout this chapter, various disease processes and bodily changes occur in older adults. For example, impairments in vision, hearing, reaction time (motor function), and strength can create obstacles in maintaining the ability to drive. Although everyone ages differently, driving can be a difficult discussion for older adults and their families as they note declines in themselves, their family member, or friend. Careful review of all aspects of an individual's abilities to drive needs to be taken into consideration when deciding whether an older adult should continue driving. Safety is the top concern for all. For more information on driving, see Chapter 9.

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▶ Summary Clearly our health and well-being depends on the degree to which our organ systems can successfully work together to maintain homeostasis. Diminished function in one system can be minimized by appropriate compensatory mechanisms in other systems. The linear decline that seems to characterize many physiologic functions challenges and impedes the body's ability to maintain homeostasis over time. The gradual loss of functional reserve capacity in the organ systems is clearly associated with age. A physiologic disturbance that is easily correctable at age 30 may cause significant illness at age 60 or death at age 90. Perhaps, it should not be surprising that the linear decline in physiologic functioning directly correlates with a logarithmic increase in mortality (Timiras, 2007a). Our bodies tend to function well during younger years, despite the accumulation of environmental and genetic insults. However, at some point, we reach a “critical mass” of impairment, a point beyond which our homeostatic correction mechanisms are no longer able to keep pace. When this point is reached, the likelihood of illness, disease, and death rises exponentially (Caughey & Roughead, 2011).

We may take comfort in the fact that much of the illness and suffering that tends to come with old age can be delayed or at least modified by taking proper care of ourselves. The hallmarks of preventive medicine, such as eating right, exercising, and avoiding cigarettes, are most effective when initiated early in life and practiced habitually throughout life. Although there may be wisdom in the adage “live for the day,” it is equally wise, from a health perspective, to “live for tomorrow.”

CASE STUDIES

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Case 1:Mrs. Winnie Smith is a 74-year-old who participates in a local adult day care program. Mrs. Smith has been participating for the last 2 years at the facility with little decline noted. She is a retired teacher and enjoys talking with other residents that attend activities at the facility. Her intake record lists her medical history as having mild hypertension and osteoporosis. Recently, one of the staff at the facility notices that Mrs. Smith has been having difficulty swallowing during meals and snacks. She mentions it to her manager, who places a call to Mrs. Smith's son, Phillip, her primary caretaker. Phillip asks, “Is this something I should take her to the doctor for, or is it normal?”

1. What is Mrs. Smith's condition called? 2. What could be causing this problem? 3. Would you recommend that Phillip take his mother

to the doctor? Why or why not?

Case 2: Mrs. Chewning is a 78-year-old recently admitted to the hospital for respiratory distress. She has a history of asthma, hypertension, and diabetes. Mrs. Chewning lives with her husband in a two story home with little support from other family members. She retired after working 30 years at a paper mill, and smoked a half pack of cigarettes a day for 30 years. She finally quit when her husband was diagnosed with COPD. After numerous tests at the hospital, she was diagnosed with chronic bronchitis.

1. In addition to her emphysema and chronic bronchitis, what age-related changes are likely affecting Mrs. Chewning's ability to breathe?

2. What is causing Mrs. Chewning's difficulty with clearing her lungs?

3. Is Mrs. Chewning facing an increased risk of developing pneumonia? Why or why not?

TEST YOUR KNOWLEDGE

Review Questions

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1. Aging results from accumulating damage to cells caused by molecules that have unpaired electrons in their outermost valence shells describes _________________.

a. Rate of living theory b. Free radical theory c. Somatic mutation theory d. Wear-and-tear theory

2. Match the following cardiovascular conditions to the most appropriate descriptions.

______ Coronary heart disease ______ Peripheral arterial disease ______ Congenital heart disease ______ Deep Vein Thrombosis ______ Cerebrovascular disease

a. Changes in the blood vessels that supply oxygen to the brain

b. Narrowing of the blood vessels that supply oxygen rich blood to the heart

c. Defects of the heart present at birth d. The disease process arteries narrow and circulation

to extremities is reduced e. The formation of blood clots commonly in the leg

veins

3. When working with an older adult that has a pathological fracture of the leg, what is most likely the cause of the fracture?

a. Osteoarthritis b. Kyphosis c. Osteoporosis d. Sarcopenia

4. Visual problems related to the aging process include all the following except:

a. Presbyopia b. Cataracts

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c. Presbycusis d. Macular degeneration

5. When blood flow is diminished to the __________, wound healing is impaired.

a. Connective tissue b. Epidermis c. Fibroblasts d. Dermis

Learning Activities

1. Develop a concept map that highlights concepts of the age-related changes of the organ systems.

2. Identify age-related changes that you see in an individual (family member or client/patient) and describe the impact these changes have had on the individual.

3. Develop a teaching module on health promotion through the life span in order to encourage healthy aging.

4. Discuss the various physiological changes of aging to which smoking contributes.

5. Describe effects of aging with regard to the cardiovascular system.

6. Describe why older adults are more likely to develop acute or chronic renal failure.

7. Discuss factors that decrease mobility in the musculoskeletal system.

8. Explain the controls of the endocrine system and how it relates to aging.

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CHAPTER 8 Cognitive and Psychological Changes Related to Aging Regula H. Robnett, PhD, OTR/L, FAOTA

CHAPTER OUTLINE

INTRODUCTION

TYPICAL COGNITIVE CHANGES OF AGING Typical Cognition Overview Crystallized and Fluid Intelligence Processing Speed Learning in Late Life Specific Factors Impacting Cognition

Neuroplasticity Cognitive Reserve Sensory Issues (Sensory Decline and Sensory Deprivation) Environmental Factors

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Stereotypes of Aging Specific Aspects of Cognition

Orientation Attention Memory Executive Functioning

Assessing Cognition Interventions to Maintain or Enhance Cognition in Older Adults The PACES Program to Promote Brain Health

Purpose Active/Activity Cognitive Pursuits Emotional Health Socialization and Sleep

ATYPICAL CHANGES OF COGNITIVE AGING Risk Factors for Cognitive Decline Minor Neurocognitive Disorders (Mild Cognitive Impairment) Overview of DSM-V Major Neurocognitive Disorders

Alzheimer's Disease Frontotemporal NCD Dementia with Lewy Bodies Parkinson's Disease with Dementia

Working with Persons Who Have Major NCD Comparing Dementia with Depression and Delirium

Depression Suicide in Older Adults Delirium

Related Potentially Reversible Disorders Malnutrition Cerebrovascular Accident or Stroke Hypothyroidism Failure to Thrive

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Urinary Tract Infection Lack of Oxygen Substance Misuse and Abuse

PERSONALITY DEVELOPMENT Five-Factor Model of Personality

Personality Stability Personality Differences by Cohort Malleability of Personality Traits

Personality Summary Behavior Change

Motivational Interviewing

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Describe the three basic factors that cause cognitive impairments in older adults.

2. Describe how general (fluid and crystallized intelligence) and specific aspects of cognition (attention, orientation, memory, executive functioning, and learning) may change with the aging process.

3. Describe compensatory measures which could be used for persons with decreased or changed cognitive functioning.

4. List possible screens for use in detecting cognitive changes.

5. Compare and contrast signs of delirium, depression, and dementia.

6. Complete a screen for depression to make a referral for assistance.

7. List general guidelines for working with people to enhance performance of people with all cognitive levels.

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8. Understand conditions that may mimic dementia (but that are often reversible).

9. Differentiate aspects of personality that may tend to change over time from those that may not, based on current research.

10. Discuss aspects of behavioral change as these relate to older adults.

11. Describe factors believed to contribute to a positive quality of life in older people.

KEY TERMS

Age-associated memory impairment Alzheimer’s disease Attention Behavior change Bereavement Cerebrovascular accident Cognition Crystallized intelligence Delirium Dementia Depression Episodic memory Failure to thrive Fluid intelligence Gerotranscendence Heterogeneous Learned helplessness Long-term memory Malnutrition Mild cognitive impairment Motivational interviewing Orientation Personality Primary memory Procedural memory

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Prospective memory Quality of life Semantic memory Short-term memory Stereotypes Suicide Working memory

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▶ Introduction Stereotypes of aging depict a steady decline of cognition and most aspects of functioning despite evidence to the contrary, which shows that the majority of older adults are able to care for themselves and maintain independence throughout most of their lives. The Centers for Disease Control and Prevention (CDC), estimated using 2003–2007 data that 82% of older people, 85+, do not have any limitations in activities of daily living (ADLs) and 65% have no limitations in the more complex instrumental activities of daily living (IADLs; Arias, 2007). In other words, the majority of older adults perform adequately to be able to complete both basic and complex daily tasks.

Human cognition develops into adulthood, including the finishing touches on the frontal lobes, which take place in one's mid-20s. Development is described as a positive emerging state, whereas aging, especially in the latter third of expected life span, is viewed as a negative state moving toward the inevitable end of life (Perlmutter, 1988). Yet, individuals who are aging typically do continue to develop throughout life. They learn new skills and continue to make lifestyle changes as life progresses. Well older adults (the vast majority of all of a certain age) work at making life better (and in the process often enjoy it more).

This chapter explores cognitive human development throughout life in the typical aging process and juxtaposes it with the atypical or abnormal aging process with which it is sometimes confused. Although change is a constant in our lives and the aging process inevitably entails change, not all age- related changes are negative. Adverse physical and cognitive changes that do occur in older people may be the result of disease, the accumulation of poor lifestyle choices, the simple aging process alone (including genetics), the expectations of decline, disuse of the body and/or the mind or a combination of these detrimental forces.

When working with older people, knowledge of the typical aging processes needs to be combined with an understanding of

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the predominance of individuality within this heterogeneous population. This chapter demonstrates that chronological age is less a predictor of cognitive performance than other factors such as subjective and objective health status, personality traits, and lifestyle choices, especially as the impact of these choices accumulates over decades of time.

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▶ Typical Cognitive Changes of Aging The simple statement “cognition decreases with age,” although widely accepted as hardcore fact, needs to be fully scrutinized because the state of cognition in old age offers many facets of complexity. Due to the cumulative nature of lifestyle choices (e.g., in the realms of nutrition, self-neglect, or substance use or abuse) and the impact that disabling conditions have on some older people but not others, elders tend to become more and more different from one another over time—they become a more heterogeneous group (in this case, in the realm of cognitive performance), even though people beyond a certain age (60-65+) tend to be lumped together into a single group, as if they were all alike. Older people, who have inherited the right genes, have made positive choices throughout life (e.g., regarding exercise, nutrition, and managing stress), and perhaps have garnered a little luck, may be able to function as well as or even better than when they were young, whereas others succumb to disease or functional decline. As caring healthcare professionals, we can help older people enhance their brain health, live their best possible lives, and promote the compression of the period of infirmity that may occur at the end of our natural life span (an idea first proposed by Fries, 2005).

Typical Cognition Overview Cognition or mental processing includes thinking, learning, and memory. Our brains control everything we do intentionally and much of our unintentional behavior as well. A well-known assertion posits that cognition declines with older age. This premise is only partially true. Zec (1995) asserted that cognitive impairments in older adults primarily are caused by three factors: disease, disuse, and the aging process. Although we cannot turn back the clock and will inevitably get older, we do have some control over the other two factors.

Several disease processes affect cognition, and these conditions are more common in older people than in persons

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who are younger. Diseases related to cognitive performance include the minor and major neurocognitive disorders (NCDs; American Psychiatric Association [APA], 2013), as well as diabetes mellitus and cardiac and cerebrovascular diseases. Individuals with an interest in the problems of aging related to specific diseases are encouraged to investigate these. This chapter focuses on a few of the most prevalent thieves of brain power or cognition.

We explore optimal brain functioning later in the chapter. First, we delve into various aspects of cognition and how each aspect may change over the course of typical (i.e., healthy) aging. To simplify the presentation, cognition is divided into several sections. However, keep in mind that these cognitive components rarely have distinct boundaries. Given the vast interconnecting networks in the brain, each aspect of cognition influences other aspects as we perform our daily tasks. In fact, it is rare for a person to have an isolated cognitive deficit because the human brain tends to work in a highly integrated fashion.

Crystallized and Fluid Intelligence Crystallized intelligence tends to remain strong in persons who are aging typically, and includes skills such as language comprehension, educational qualifications, and life and occupational skills. Baltes (1993) compared this type of intelligence with what we term wisdom or “an expert knowledge system in the fundamental pragmatics of life permitting excellent judgment and advice involving important and uncertain matters of life.” Older adults, especially persons known as wise elders, may become more skilled at making decisions, perhaps because of their ability to take life's ambiguities into account (Kim & Hasher, 2005).

In spite of a strong perceived link between wisdom and aging, even highly intellectual older individuals in our society are not necessarily revered for their level of understanding of life's complexities. In certain cultures, especially ancient ones, elders are expected to share historical stories, songs, rituals, and traditions with future generations. They are considered the sages of the community. Yet, in our modern Western society, older people rarely have such important societal roles, and therefore

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the wisdom of aging may often get lost in favor of individualism, materialism, and the quest for eternal youth, thus losing “our sense of history and real wisdom” (do Rozario, 1998, p. 121). Schachter-Shalomi and Miller (1995), in their book From Ageing to Sageing: A Profound New Vision of Growing Older, put forward the idea that older people who work on expanding their consciousness and promoting their spiritual growth may demonstrate wisdom in their actions, thereby attaining “the crowning achievement of life” (p. 17). Rather than lamenting a “silver tsunami” of older adults that will burden the system, we could view this turn of events as a “silver windfall.” Perspectives and words do matter (as discussed later).

Fluid intelligence includes the speed and accuracy of information processing such as item discrimination, comparison, and categorization. This type of intelligence has been deemed to be largely evolutionarily and genetically based. Baltes (1993), who has extensively researched the two types of intelligences in young and old subjects, found that only fluid intelligence showed a significant decline in older adults. Even though many studies (e.g., Schaie, Willis, Knight, Levy & Park, 2016) have shown that the human mind has limitations in old age, Baltes, Staudinger, Maercker, and Smith (1995) pointed out that these limits often are not apparent because the brain is generally not used to its full potential. They drew an interesting analogy of a young and an old person strolling together. Walking together works out well until the couple approaches a hill; the steeper the hill, the more difficult it may be for the older person to keep up. This is true not only with physical performance, but also with mental functioning, especially processing speed.

Processing Speed A decrease in speed of processing information has been demonstrated consistently as people age (Anderson & Craik, 2017). Lichtenberger and Kaufman (2012) proposed that this decrease in processing speed is strongly associated with higher level cognitive performance. However, cognitive processing may be heavily influenced by physical motor speed, which also declines with age (Ebaid, Crewther, MacCalman, Brown, & Crewther, 2017). Impaired sensory functioning (e.g., vision

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and/or hearing) may also contribute to slowed processing speed (perhaps due to associated neuronal atrophy due to disuse; Valentijn et al., 2005).

Learning in Late Life The ability to learn new information can change as people age (FIGURE 8-1). Certainly, the old (and we hope outdated) adage that “an old dog can't learn new tricks” does not apply to older people who are aging well. Ongoing research, such as that cited by Curlik and Shors (2013) and taking place at the Salk Institute, has unequivocally demonstrated that even older (middle aged and beyond) brain cells can regenerate, an exciting finding with huge implications for stroke rehabilitation and medicine in general. Older individuals indeed may need more practice sessions than their younger counterparts to master a task. They also may need to have the instructions presented in a variety of ways (e.g., verbal, written, or demonstrated) and perhaps geared toward their sensory capacities (e.g., larger print) before learning can occur.

FIGURE 8-1 The saying “old dogs can't learn new tricks” could not be farther from the truth. While older adults may take longer to learn and

need accommodations, they are still capable of absorbing new information.

© Noel Hendrickson/Digital Vision/Getty Images

Specific Factors Impacting Cognition

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A number of factors, both intrinsic and extrinsic to each individual, affect each person's cognitive performance. Innate intelligence provides the foundation of capacity for learning throughout life. For example, we cannot expect someone of average intelligence to perform at the capacity of a neurobiologist. Along with individual innate intelligence, the constructs of neuroplasticity and cognitive reserve are pertinent for the topic of aging and cognition. Neuroplasticity

Within the relatively small mass of each brain (approximately three pounds for the average adult) lies a marvelously plastic organism that stays dynamic throughout a healthy life. While it is generally easier to learn and adapt at younger ages (e.g., think of the speed with which a toddler or young child learns a new language compared to an adult), nonetheless older brains can adapt and engage in new learning. An example is that of London taxi drivers who have larger hippocampi (where topographical orientation processing takes place) compared to others (even bus drivers; Maguire, Woolett, & Spiers, 2006). A study by Draganski et al. (2004) found that the experience of learning to juggle in adults (although these subjects were young adults) increased gray matter mass of part of the brain within one week of intense training, a finding that replicated earlier animal studies. This outcome is suggestive of the plasticity of mature human brains, although additional research is needed to substantiate these results. Motor skill training may not only enhance learning, but it could also change the brain for improved learning in the future. Cognitive Reserve

Cognitive reserve is akin to a cognitive savings bank. People who have substantial reserves may be able to use readily available or alternative brain structures to maximize performance on cognitive tasks even after sustaining a brain injury or illness. An example is effectively using environmental cues to compensate for decreased memory performance (perhaps in people who are in an early stage of dementia). Technology (e.g., a computer or smart phone) may be helpful to maintain outward cognitive performance (e.g., quickly looking

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at the phone to determine what day it is). A high level of cognitive reserve is often associated with higher levels of education, higher IQ levels, and more engagement in complex occupations and leisure pursuits (Stern, 2009). Cognitive reserve levels clarify (at least to a degree) why essentially similar structural brain damage in two people (e.g., through a stroke) may have very different behavioral manifestations or outcomes of impairment. Interestingly, in various studies, up to 25% of people who tested “normal” on cognitive testing were found to have brain pathology commensurate with AD (Stern, 2009).

What has not been determined is if people can build up their cognitive reserve (as they can build muscle strength). As noted earlier and explored later in the chapter, engaging in learning (education), and complex leisure, and work occupations (Reed et al., 2011) as well as positive and frequent social interactions may promote cognitive reserve and forestall at least the cognitive and behavioral manifestations of brain disease (Stern, 2006; Xu, Yu, Tan, & Tan, 2015). Sensory Issues (Sensory Decline and Sensory Deprivation)

Yet another associated factor of cognitive performance to be considered is that of sensory functioning, such as hearing and vision. Decreases in these two realms can impact cognition indirectly, in that due to not hearing/seeing properly the person may demonstrate behaviors that outwardly give the appearance that they have decreased cognition. People who cannot hear may tend to miss important incoming auditory input and subsequently not answer questions correctly. Similarly, people who cannot see to read important information cannot properly process that information. Not surprisingly, decreased visual skills (after correction) and presbycusis (decreased hearing associated with older age) are both associated with lower cognitive performance (Li & Lindenberger, 2002; Anderson & Craik, 2017). Hearing and vision performance (after correction) accounted for more of the variability in cognitive outcome scores (including memory) than speed of processing or age in older adults (Herzog & Wallace, 1997; Humes, Busey, Craig, & Kewley-Port, 2013). Taking into account sensory

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awareness levels of older clients is important, especially since there are compensatory measures that can be taken to enhance sensory input and level of understanding. At the very least, someone who needs corrective lenses and/or hearing aids should be encouraged to wear them, and the practitioner should ensure that they are in working order. Environmental Factors

The context or environment surrounding the older adult can either support or hinder the learning process and overall cognitive performance. Keeping in mind that most people have individual preferences regarding favored environmental features, a few examples of how this influence might work are:

Physical environment: For example, in a noisy environment many find it difficult to concentrate. Internal environment: Discomfort of any kind (including pain, feeling tired, chilled, too hot) is not conducive to optimal performance. Cultural aspects of the tasks to be completed: For example, if the person has always deferred money management to a partner, the task may not be meaningful for the person currently. Social context: Some would rather work alone, while others prefer group work.

In a therapeutic situation, any cognitive task to be completed needs to be presented at the level of “the just-right challenge” (Rebeiro & Polgar, 1999). Tasks that are too easy will quickly lead to boredom, while tasks that are too challenging will lead to frustration on the part of the participant. Neither facilitates optimal cognitive performance.

A complication related to mostly social context that has received little attention as a problem of aging is learned helplessness, which is a condition that develops when living beings “learn that their responses are independent of desired outcomes” (Fincham & Cain, 1986). Consequently, they adapt to the situation by losing the initiative to respond to stimulation. For example, in experiments when dogs learned that they could not control the onset of electric shocks, they eventually gave up and became helpless and apathetic. Similar results can occur in

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human beings, especially older people who may receive (too much) care from others. If you hear a caregiver say “Let me do that for you,” this instance may offer an opportunity for a discussion. Every time we do something for older adults that they could do for themselves, we may be making it more difficult for them to do this task next time when no one is there to help. Stereotypes of Aging

Most of the stereotypes about aging adults seem to be negative (e.g., frail, forgetful, and slow to move and learn). Bennett and Gaines (2010) reported that while aging stereotypes can be both negative and positive, in the United States, they tend to be negative. Levy (2003, 2009), through her noteworthy research on the stereotypes associated with aging, concluded that aging stereotypes may become self-fulfilling prophecies that actually may lead to poorer performance among elders. As people age, these stereotypes become ingrained in a people's self- perceptions, with a resulting negative impact on their cognitive and functional well-being. Levy (2009) suggested that we need to restructure our deep-seated views by focusing more on the positive changes of aging. Ageist stereotypes can send messages that result in giving in to the “infirmities of old age,” while more effective, positive messages (such as “it's never too late to learn” or “entering old age is like opening a door to an exciting new chapter of life”) could potentially boost elders' self-esteem, and subsequently their ability to remain vital and productive (Joslyn, 2016). By busting negative stereotypes (which is more difficult than it sounds) and increasing societal awareness of the strong impact of these negative preconceived notions (i.e., not the actual changes of aging, but merely the expectations), we can begin to promote a more realistic image of aging, improved health, and better performance over time (Levy, 2003, 2009).

Many of the common stereotypes of aging (e.g., decreased cognition, less capable) do, however, relate to dementia, which does become more prevalent as people age, but recall that dementia is not considered part of the typical or normal aging process. Dementia is an umbrella term that describes a number

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of conditions that cause a decline in cognition and everyday performance (as described later).

An important factor contributing to the current less than rosy outlook on the aging process is the prospect of cognitive decline, which many consider scarier than death. Garrett (2013) describes a new societal phenomenon titled “dementiaphobia”; he describes this fear as “the idea of losing who we are— becoming a stranger in an unfamiliar body” (Garrett, 2013, para 8). According to a study out of the United Kingdom, one- third of individuals aged 55+ feared getting dementia more than they feared cancer, stroke, or heart disease (Davies, 2015).

Specific Aspects of Cognition This section explores different aspects of cognition. While these are divided into separate sections for ease of understanding, the way the brain works, one rarely has deficits in one lone area. The brain contains so many interconnections that distinct divisions of cognitive skills are difficult to discern. Orientation

People who are aging are generally alert and oriented; they fully understand who they are, where they are, and the aspects of time and the situation they are in. This is referred to as being A&O × 3 (alert and oriented times three; TABLE 8-1). However, the flexible schedule of retirement rather than a specific disease process may contribute more to apparent disorientation to exact date or time of day. Therefore, when determining someone's level of orientation, allow a little flexibility and consider the potential influence of an unstructured lifestyle. A psychiatric disturbance is indicated when a person is alert but is not oriented at least to him- or herself. This is not a common occurrence among older people, except for persons with severe dementia, another psychiatric or severe illness, or perhaps due to the influence of strong medication.

TABLE 8-1 The Cognitive Changes of Aging

Aspect of Cognition

Changes of Aging Helpful Hints

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Orientation: Knowing who one is (A&O × 1), where one is (A&O × 2), and having an adequate understanding of time (A&O × 3). A&O × 4 includes an awareness of the situation as well (not always addressed).

In the typical aging process, orientation usually remains largely intact as part of crystallized intelligence. As a result of retirement lifestyle, older adults may have more difficulty remembering the exact date or day.

Use calendars and orient person as needed. If the older adult is in an institution, be sure that the orienting information available is up-to-date. Questioning people about orienting information may be intimidating.

Attention: Includes being able to sustain attention or focus on one task, alternating attention between two tasks, or dividing attention between two or more tasks (simultaneously). Selective attention involves paying attention to relevant stimuli while filtering out unimportant information.

Ability to sustain attention without distractions remains intact, although older adults tend to be less able to ignore distractions during tasks. Alternating and divided attention tasks may become more difficult, for example, in the task of driving which often involves competing tasks.

Limit distractions, especially when older adults are completing difficult or multifaceted tasks (such as driving) or when they are attending to crucial information (such as healthcare instructions). For example, if a stroke patient is concentrating on walking, the practitioner should not be chattering about unimportant topics.

Memory: The different types of

A decline in memory acuity at

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memory are defined in the chapter.

older ages has been corroborated by a number of cross- sectional studies. Older people tend to have more difficulty with short-term memory and remembering more recent episodes in their lives, including the source of information or the episode (e.g., where it happened, whom they already told).

learning. Writing lists and other memory aids can be helpful (and may be used more spontaneously by older adults than by younger people). Do not assume just by telling someone something that he or she will remember and incorporate what you said.

Crystallized intelligence: Includes both basic knowledge and skills that accumulate over the course of life.

In typical aging, this remains intact or may even continue to improve, especially for overlearned material and individual work-related skills. Reading comprehension, for example, is maintained well into old age, at least until age 75+. Elders may see themselves as more open-minded or able to better differentiate shades of gray (i.e., ambiguity) rather than just accepting concrete

This is related to the construct known as wisdom, and may relate to the ninth stage of life, “gerotranscendence.” Well older adults have the potential to gain wisdom through life experience and an increased universal knowledge base. Plenty of older people have wisdom to share with others, including their healthcare providers.

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black/white “facts” as truth.

Fluid intelligence: “The ability to find meaning in confusion and solve new problems … [and] to draw inferences and understand the relationships of various concepts, independent of acquired knowledge.” Includes executive skills that involve judgment, awareness, and problem-solving.

Declines with age to a degree; older adults tend to have more difficulty with more complex, multiple-step tasks. Because fluid intelligence is crucial to the learning process, learning may slow down but does not stop in typical older adults.

Fluid intelligence may improve through practice of tasks requiring executive skills such as self- monitoring performance, completing two tasks simultaneously, and inhibiting irrelevant stimulation. However, this finding was based on respondents mostly in their 20s. Challenging (not frustrating) tasks, especially novel ones, may be crucial for maintaining brain health.

Executive skills: High-level cognitive skills (including working memory). These skills enable us to plan, organize, socialize, and complete complex management and interaction tasks.

Declines do occur even in typical agers, who tend to begin using both sides of the prefrontal cortex for working memory tasks (younger adults activate only one side). Decreased selective attention also interferes with working memory performance.

The typical older adult naturally compensates by recruiting more neuronal resources. Maximize performance by limiting distractions and keeping the number of prompts (or steps) within the person's ability (usually four or fewer).

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Data from Robnett (2008). Perlmutter (1988). Tun & Wingfield (1995); West (1999);

Verhaeghen & Cerella (2002); Anderson & Craik (2017). Colsher & Wallace (1991);

Hultsch, Hertzog, Small, McDonald-Miszcak, & Dixon (1991); Wheeler (2000). Hoyer

& Verhaeghen (2006). Baddeley (1995). Schaie (1996); Salthouse (1999). Erikson,

Erikson, & Kivnick (1994). Erikson & Erikson (1998). Ardelt (2008). Cavanaugh &

Blanchard-Fields (2006). West (1999). Jaeggi, Buschkuehl, Jonides, & Perrig (2008).

Nussbaum (2003). Kirova et al. (2015).

Attention

Attention, that is the ability to focus or concentrate on an activity, does not seem to be affected specifically by age (Zec, 1995; Blazer, Yaffe, & Liverman, 2015). Simple, overlearned, or automatic tasks do not usually become more difficult for older people. However, in a study by Tun and Wingfield (1995), older adults were questioned about their perceptions of their own abilities to complete 16 different divided attention tasks, such as walking and talking or driving and planning a schedule. The researchers found that the older participants did not perceive routine tasks and tasks involving speech processing to become more challenging over time. However, relative to younger adults, the older respondents reported increasing difficulties with simultaneous dual task performance on more demanding tasks. Therefore, it may be more difficult for older adults to divide their attention between two activities (e.g., driving and talking; cooking multiple courses at the same time). Older people do tend to have more difficulty with divided attention tasks, especially when the two or more tasks are complex (e.g., not automatic or overlearned; Verhaeghen & Cerella, 2002; Blazer et al., 2015). Memory

Memory is not a simple, unidimensional construct; it is rather multifactorial and extremely complex, and much about the workings of memory in the brain remain elusive (Park & Festini, 2017). Although overall memory performance does decline with age, it is worth taking the time to qualify exactly what the construct of memory entails and to explore the different aspects of memory in relation to the aging process. Recalling something out of the blue is a more complex task and

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is affected to a greater extent by age rather than recognition (e.g., in which one is given hints about the potential answer with multiple-choice answers). Recognition, which is simpler, may be retained to a high level throughout life (Parkin & Java, 2000). Other basic memory tasks such as those requiring procedural memory (i.e., remembering motor patterns), basic cognitive skills (mathematics or use of vocabulary), or remembering facts that have been well-learned are usually preserved throughout the typical aging process.

Several types of memory are described here, although these categories are not an exhaustive list. The description includes how aging is associated with the type of memory in question.

The following types of memory are based on temporal aspects of remembering:

Primary memory has limited capacity and is based on incoming information that is either used or generally forgotten in a matter of seconds. Immediate recall of seven digits (plus or minus two) has been considered normal for adults since Miller's research in the 1950s (reported in Connor, 2001). Primary memory does not seem to be affected by aging. This type of memory involves sustained attention and is of extremely short duration (unless rehearsal takes place). Short-term memory involves remembering information for a short duration of time. For example, normal short-term memory is being able to recall a few items or a seven-digit number (e.g., a telephone number) for a few minutes. Older people do show a decline in this type of memory, and the decline is more pronounced as the information increases in length or complexity (Lustig & Lin, 2016). Working memory refers to being able to actively use or manipulate information from the brain's short-term storage base during a task. For example, it involves recalling a telephone number while dialing the number or retaining the steps of a new recipe while cooking (both without looking up the information mid-task). Age-related deficits such as decreases in reading and listening span (especially for later use) have been consistently significant (Lustig & Lin,

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2016). Prospective memory enables a person to remember to do something in the future (e.g., appointments, taking medications, chores). With regard to aging, older people may be better at spontaneously compensating for losses in prospective memory as they learn to adjust to memory losses gradually over the course of their lives. In naturalistic or real-life settings, older people often outperform their younger counterparts by incorporating compensatory strategies such as list making (Baddeley, 1995; Hoyer & Verhaeghen, 2006). Long-term memory is permanent or long-term storage, for example, autobiographical information, early life experiences, or repetitive information that involves “more durable encoding and storage systems” (Birren & Schroots, 2006, p. 479). For well-learned knowledge, this type of memory is the least affected by age, although it may be difficult to conjure up the exact facts when needed.

Rather than being time based, the following types of memory are based on the type of information to be encoded:

Episodic memory is oriented toward the past and is what most people think of when they think of the global term memory. Specifically, this type of declarative or conscious memory involves remembering episodes or experiences in our lives (e.g., what we ate for lunch, our last birthday party; Bäckman, Small, & Wahlin, 2001). Episodic memory can be either short term, such as remembering that you just turned on the stove, or long term, such as remembering the very first day of school. Episodic memory is particularly vulnerable to the effects of aging (Lustig & Lin, 2016; Hultsch, Hertzog, Dixon, & Small, 1998). When tested simultaneously, younger age groups tend to consistently outperform older age groups on tests of episodic memory (Hultsch et al., 1998; Lustig & Lin, 2016).

An analogy involving episodic memory could be to imagine a bucket (i.e., the brain) that holds just a certain amount of information. As time goes by, the bucket gets filled with memories of life's events. As the bucket nears capacity, more of

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the potential memories get sloshed out; only memories that are intensely emotional go deep enough to be retained. Although this analogy has limited direct scientific evidence, it can explain the increased difficulty of retaining additional information as we grow older. Another explanation for declining episodic memory skills could be disuse caused by less environmental stimulation (e.g., less contact with the outside world) or decreased sensory awareness (e.g., due to poor vision or hearing).

Semantic memory involves a cumulative knowledge base about the world in general (e.g., language, including the meaning of words and the relationship of words, mathematical facts, symbols and formulas, vocational information learned during one's career, and recall of history and worldly facts). This “internal lexicon” is the buildup of information over the course of one's life (as part of crystallized intelligence; Bäckman, Small, & Wahlin, 2001, p. 352). Semantic memory changes over time portray a complex picture, in that elders have more word-finding problems (such as the tip of the tongue phenomenon), but overall vocabulary may even improve well into old age (Schaie, 1996; Lustig & Lin, 2016). Procedural memory is performance based, for example, remembering how to ride a bicycle or the motoric steps to completing a recipe or self-care task. Because repetitive daily tasks are often overlearned and have become automatic, this type of memory is often maintained into old age. This situation can be problematic at times, for example, when a person with dementia remembers the procedure of driving (e.g., inserting the key, turning the wheel, pushing on the gas pedal) but has forgotten how to manage the more cognitively challenging aspects of driving (e.g., problem- solving in the midst of traffic or navigating in unfamiliar territory).

A great number of studies have been completed on memory and aging (for a review, see Park & Festini, 2017). What is noteworthy is that not all types of memory are affected equally by the typical aging process. Critical differences have been found among the various memory systems. Research in the areas

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of episodic versus semantic memory has often demonstrated a more severe decline in memory for events (episodic memory tasks), whereas verbal memory such as vocabulary (semantic memory) tends to be better preserved (Lustig & Lin, 2016). Working memory tends to decline more sharply with age than immediate or primary memory. Most older people were able to retain 7-digit telephone numbers just as well as their younger counterparts (primary memory task); however, when a 10-digit number was used (e.g., a long-distance telephone number), the older participants did not perform as well (Gorman & Campbell, 1995). Studies showing a memory decline with age have often involved more complicated tasks (Hoyer & Verhaeghen, 2006; Lustig & Lin, 2016). Older people also seem to have more difficulty ignoring distractions during working memory tasks and less able to ignore irrelevant thoughts (Gazzaley, Sheridan, & Cooney, 2007).

Memory remediation may be possible for persons who are motivated to improve their ability to remember. Results have been mixed, with some promising results, but also with an ongoing concern about the limited transfer of the training to improvement in everyday working memory performance (Hering, Meuleman, Bürki, Borella, & Kliegel, 2017). Compensating for rather than trying to improve decreased memory performance seems to work best for most older people who have learned to adapt over the ensuing years. Sometimes, elders get creative in their approaches to remind themselves. For example, putting car keys in the refrigerator as a reminder to bring lunch with them or keeping pill boxes at the dinner table as a reminder to take medications can both be helpful.

Compensatory techniques and adaptive measures may be necessary to maintain quality of life if memory skills start to diminish significantly. Self-help books and online sites on this subject are readily available. For the healthcare professional, several tactics may be helpful when working with people who tend to be forgetful:

Make the material to be learned interesting (applicable to the client's life). A story, an anecdote, or even a song may more easily catch and hold the client's attention. Use multimodal sensory input (e.g., let the person hear and

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read the information, as well as use other senses to interact with the material as appropriate). Use repetition, but not to the point of boredom or becoming condescending as if you are testing the person. Use cuing, but only as needed. Have clients engage with or manipulate the information if possible (e.g., have them write out or input their own schedule rather than just giving them the printed schedule; Figure 8-2). Information that the older person perceives to be important will more likely be able to find a place in memory storage banks. Immediately following an instruction session, have clients paraphrase what was just conveyed or show-and-tell the information they just encountered; both can be effective techniques to enhance the learning process, applying the adage that one learns best by teaching. (This is an example of the teach-back method found in Chapter 5.)

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FIGURE 8-2 Allowing clients to actively engage in obtaining information helps them remember the material.

© Rob Marmion/Shutterstock

Following are some tips to stimulate remembering (or compensate for decreased memory), adapted from Straus (2009). These may be especially helpful for older adults.

Concentrate on paying attention: Usually, information can be remembered only if it is initially acknowledged. Repeat what you want to remember by rehearsing aloud: If you meet someone and want to remember his or her name, be sure to use the name in conversation within the next few minutes. Make lists or use a date book (or electronic calendar): Write

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down what you want to remember (but then practice remembering without the list). Establish habits: For example, always put your keys on the hook beside the door or always park in the same section of the parking lot at the mall. Healthy habits of proper diet and exercise may improve not only physical, but also cognitive well-being. Relax: Relaxation may allow the mind to clear itself of problems, which may help to facilitate recall, whereas excess stress can hinder learning and memory. Use self- and environmental cues: These cues can be invaluable for stimulating memory skills. Environmental cues can be as diverse as signs, kitchen timers, or alarm clocks. Use memory triggers; look over photos to provoke memories.

Problems with memory tasks, both subjective (memory complaints) and objective (actual losses), are probably the most commonly acknowledged types of age-related cognitive decline (Bartrés-Faz et al., 2001). Displaying poor memory skills does not mean that a person has dementia. Mild forgetfulness, when it is an isolated cognitive impairment, is not cause for alarm and is often experienced by the young and old alike. Decreased memory or age-associated memory impairment (AAMI) is widespread and simply refers to memory skills that are lower than average. AAMI by itself may not be a serious condition. Everyone forgets names, events, and factual information. A red flag needs to be raised when one forgets crucial well-learned information (e.g., how to toast bread or how to find a familiar destination). Executive Functioning

An agreed-upon definition of executive functioning (EF), aptly named to describe the cognitive skills used by an executive on the job, is not readily found. The “central executives,” also known as the frontal lobes of the brain, are key to performance of EF skills in the realms of working memory, mental flexibility, and self-control. Another way of viewing EF is thinking of the frontal lobes as our own personal “air traffic controllers” (Center for the Developing Child, Harvard University, 2011). A

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person who has deficits in EF has difficulty organizing multistep tasks such as managing multiple medications or financial management. This person may also have difficulty appropriately responding to social cues and demonstrates decreases in working memory, which is the ability to remember information for retrieval as needed during a task (e.g., the steps to a recipe while cooking or the cards already played during a poker game).

Typically, older adults show some declines in EF. Specifically, working memory has been studied extensively. Kirova, Bays, and Lagalwar (2015) reviewed the expected changes that occur in working memory in older adults. Aspects that change with age include cognition-related biological markers such as decreased brain mass and less dense neuronal connections (Drag & Bieliauskas, 2009). As these changes occur in the frontal lobes, high-level cognitive skills such as EF decreases, and thus, younger adults consistently outperform older adults in working memory tasks such as recalling if a stimulus was just presented previously (Kirova et al., 2015). Older adults also tend to be more susceptible to extraneous interference (e.g., distractions while completing EF tasks; Kirova et al., 2015). These findings support the recommendation to provide a supportive environment to enhance learning and memory tasks for older adults.

Table 8-1 gives a brief overview of the cognitive changes associated with advanced age, along with a few helpful hints for healthcare providers. An important caveat is that these hints just barely scratch the surface. People need individualized (client centered) care, and these shared ideas may occasionally help. A few areas are described in more depth in the body of the text.

Assessing Cognition One way to assess whether older people have memory or other cognitive impairments is simply to ask them. Yet, it is worth noting that people, in general, do not have a good sense of how well they can remember, and individuals with other cognitive deficits (e.g., decreased insight or judgment) likely have difficulty accurately judging their own cognitive performance. Although self-assessments are efficient and easy to use, their usefulness can be questionable. Studies have shown that the

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correlation, between level of memory impair ment per self- report and level determined through objective neuropsychological testing, has typically been insignificant or low (Ryan, 1992; Craik, Anderson, Kerr, & Li, 1995; Knight & Godfrey, 1995). Keep in mind that we would be asking persons with less than perfect memory capabilities to make judgments about their ability to remember. A more objective measure would be observing functional memory performance, for example, noting whether the person has left the stove on, has had difficulty with medication routines, or has forgotten important appointments.

Healthcare practitioners can use various screens to assess cognitive function. The results can influence the approach to rehabilitation, offer suggestions for caregivers, and provide strategies for managing cognitive decline. A team approach seems to work best for assessing and treating cognitive performance deficits. TABLE 8-2 provides a brief list of a few available tools.

TABLE 8-2 Tools for Assessing Cognition

Name Tool Description

Montreal Cognition Assessment (MoCA)

Rapid screening tool for mild cognitive dysfunction that assesses attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations, and orientation.

The Saint Louis University Mental Status (SLUMS)

Examination with oral and written content for detecting mild cognitive impairment (MCI) and dementia; results can help a doctor determine if further diagnostics are needed if dementia is suspected. May be more sensitive than the MMSE for persons who are mildly impaired.

Mini Mental State Exam (MMSE) and the MMSE-

Common screening tool that provides quantitative measure of cognitive impairment. New version takes about 15 minutes to administer and is available in 10 languages.

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Short Blessed Test (SBT)

Sensitive screen used to detect early cognitive changes associated with AD. Low score is best.

Executive Function Performance Test (EFPT)

Top-down functional assessment that assesses executive cognitive function in an environmental context by way of task initiation, execution, and completion.

Confusion Assessment Method (CAM)

A quick screen designed specifically for clinicians to quickly assess for delirium signs and symptoms; this is especially important because delirium is so common in older hospitalized patients.

Data from Nasreddine et al. (2005); http://www.mocatest.org. Tariq, Tumosa, Chibnall,

Perry & Morley, (2006);

http://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf. MMSE:

Folstein, Folstein, & McHugh (1975); MMSE-2 : Folstein & Folstein (2010);

www.parinc.com/WebUploads/samplerpts/Fact%20Sheet%20MMSE-2.pdf. Katzman

et al. (1983); http://alzheimer.wustl.edu/adrc2/Images/SBT.pdf. Baum et al. (2008);

www.ot.wustl.edu/about/resources/executive-function-performance-test-efpt-308.

Waszynski (2003).

Interventions to Maintain or Enhance Cognition in Older Adults Performing well in the realm of cognitive performance (e.g., being able to effectively think, remember, and problem solve) is often viewed as a key aspect of “successful aging.” The best time to start exercising our brain muscles was yesterday or as young as possible (and on a consistent basis), but as a common adage also implies “it may never be too late for improvements.” This brain health program is offered in the chapter section on typical cognitive changes, because prevention of significant decline may be easier to accomplish than returning to high performance levels once the roll downhill has begun.

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The PACES Program to Promote Brain Health The PACES program or the idea of “Running through the PACES” can guide older adults (or adults of any age) to promote cognitive performance through the use of evidence- based guidelines to promote positive outcomes in the realms of thinking, memory, and learning. Most of the suggestions work best for typically aging elders, while individuals with mild cognitive impairments (MCIs) often see positive results as well. Once cognitive disease has rooted itself, the most successful approach often seems to be compensatory (discussed later). While the PACES program offers something for everyone, it should be individualized to meet the desires or the goals of the elder. The program is not prescriptive, but rather simply offers suggestions, based on substantial evidence, for factors to consider.

PACES stands for:

Purpose Activity Cognitive (pursuits) Emotional (health) Socialization (and sleep; Robnett, 2015)

Purpose

The “P” in PACES stands for purpose or finding meaning in life. This purpose may be work related or it can be whatever the individual decides. Pasricha (2016), in his book on quality of life, describes the distinctive nature of the Okinawans who live on islands in the East China Sea. They tend to be healthy, long- lived people (seven years longer on average than persons in the United States), but the most important feature of these islanders is their lack of a word for “retirement.” They simply do not retire from life, because they have “ikigai” roughly translated as the reason to get up in the morning or the drive to live a full life. In a longitudinal study that spanned seven years done in Japan, people who had “ikigai” were reported to have higher levels of education, lower levels of stress, and were more likely to still be engaged in productive activity at the end of the study. They

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were also more likely to be alive (95% were still living versus 83% of people without “ikigai”; Pasricha, 2016). In a recent longitudinal study using the national Health and Retirement Study data, Kim, Kawachi, Chen, and Kubzansky, (2017) examine the correlation of a sense of purpose in life with physical measures (grip strength and walking speed). They found that a higher purpose in life was associated with better physical outcomes, and they reminded us that having a sense of purpose is a modifiable factor—one that can be cultivated and encouraged, perhaps to improve the overall aging process. In a related study, Allen, Mejía, and Hooker (2015) examined the sense of usefulness among a group of older adults and found that a high degree of self-perceived usefulness (or productivity), which could be viewed as a sense of purpose, was associated with lower levels of neuroticism. By potentially reshaping older adults' self-perceptions of cognitive functioning and making these more positive (e.g., increasing their personal sense of purpose), more “optimal aging” could result (Allen et al., 2015). Active/Activity

The “A” in the PACES program relates to activity or remaining active and engaged in life. These meaningful activities, in which we engage, are our daily occupations. The recommendation to remain active may be self-evident, but when working with elders, too often one hears the excuse “I'm too old for that.” If the person wants to do the activity, and it can be adapted if necessary, age should not be a factor. While television offers wonderful opportunities for learning and entertainment, too much of this passive activity can be detrimental to health. Depp, Schkade, Thompson, and Jeste (2010), by assessing a national sample of adults, found that older adults watched television on average three times more than younger adults, and this level of increased television time was statistically associated with lower levels of life satisfaction. The bottom line is: “Our bodies are meant to move. And our brains are built for novelty” (Span, 2010), or as we shared recently in a wellness group for older adults: “If you can, do it; if not, do something else.” Movement and regular physical activity are important to brain health. In a recent article on training the brain, Curlik and Shors (2013), using rodent models, found evidence that aerobic physical

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exercise helped the brain produce new neurons in the hippocampus, while mental stimulation such as learning novel tasks helped those new neurons survive. Making and sustaining positive lifestyle choices can have lasting effects well into old age. While the relationship between exercise and cognitive performance in older adults has not been firmly established, the results of study reviews are suggestive of a significant positive relationship (Young, Angevaren, Rusted, & Tabet, 2015). However, the answer to whether healthier people just exercise more or if exercise truly is brain protective remains to be determined (Gow et al., 2012). Nonetheless, evidence touting the benefits of exercise is easy to find. The Mayo Clinic (2016) cites several advantages of exercising regularly, including better health (also brain health), weight control, better mood, better sleep patterns, more energy, and potentially, improved socialization and an improved sex life. An additional note: exercise does not need to take place at a gym. Sports (e.g., pickle ball, golf, swimming) and activities such as dancing (Burzynska, Finc, Taylor, Knecht, & Kramer, 2017) may even serve to enhance interest levels over rote exercise. A research team out of Colorado State University, (Burzynska et al., 2017) found that dancing seemed to stave off decline of brain white matter, which is the brain's wiring system, associated with speed of processing and memory performance (FIGURE 8-3). Perhaps, we all need to dance into old age.

FIGURE 8-3 Exercise has many health benefits, from weight control to improved socialization and an improved sex life. One form of exercise,

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dancing, has even been found to help slow the decline of brain white matter.

© Jupiter Images/Stockbyte/ Getty Images

Cognitive Pursuits

The “C” in the PACES program refers to cognitive stimulation, which is as important as physical stimulation. The Curlik and Shors (2013) study reminds us that while physical activity is important, mental stimulation may be just as important in assuring that the newly formed neurons survive.

People often believe that simply engaging in thinking tasks such as crossword puzzles or card games will be enough to promote optimal cognitive functioning. However, once these activities are no longer challenging, they may not offer enough cognitive stimulation. Neuropsychologist Dr. Paul Nussbaum, in his book Brain Health and Wellness, promotes the idea that learning should no longer be considered merely a means to an end, but that learning for its own sake is crucial to maintaining health, both physical and cognitive (Nussbaum, 2003). He expands on the adage “use it or lose it” by suggesting that we not only need to use our brains to maintain brain health, but also that we must stimulate our brains to a greater degree by engaging in activities both “novel and complex” on a regular basis (Nussbaum, 2003, p. 162). By consistently challenging our brains to learn new skills and/or gain new knowledge, we can enhance our thinking processes and potentially create brain reserve throughout life. Additionally, energizing environments that engage participants in socialization, physical activity, and mental stimulation help to create a healthy brain, one that may be able to delay the onset of disease (Nussbaum, 2003, 2011; Metz & Robnett, 2011).

One recommendation heard often and worth repeating is that of the idea of lifelong learning. We are never too old to learn something new, as long as the new learning is enticing to the learner. Myriad opportunities for lifelong learning exist online, through volunteer and work experiences, as well as through programs such as senior colleges and community learning opportunities. The Road Scholar provides one such

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opportunity; the program is a not-for-profit global program that provides learning experiences for older adults on various topics, including history, culture, nature, music, outdoor activities, crafts, and study cruises (see www.roadscholar.org/). Participants explore their interests with leading scholars and researchers share their knowledge while sailing on cruises, walking through national parks, and visiting culturally diverse areas. Our world is resplendent with opportunities for exploration; no one of any age has an excuse to not participate in some sort of learning pursuit. (See “Learning Activity.”)

A relatively recent development has been the proliferation of computer-based programs for cognitive training. Through a meta-analysis on cognitive training and mental stimulation, Kelly et al. (2014) found that the training programs often did improve certain aspects of cognition such as recall, working memory, and processing speed. However, transfer of learning, that is, to improve performance on everyday cognitive tasks, was not always evident, although offering 10 or more sessions and long-term follow-up sessions did help. Kelly et al. (2014) could not find enough rigorous studies in this realm to make definitive recommendations. More research on cognitive training is clearly needed. Emotional Health

The next letter in PACES is “E,” which involves taking care of emotional health to promote cognitive health in old age. People may not have control over the traumatic events that occur in our lives, but experts such as psychologist Viktor Frankl (1963) would maintain that we do have control over our attitude or how we respond to these life events. Our emotional health can influence our brain health in different ways. Older adults tend to focus more on the positive (known as the “positivity effect”) and seek to avoid negative people and interactions (Reed, Chan, & Mikels, 2014; Scheibe & Carstensen, 2010). However, due to this tendency toward optimism and the avoidance of negativity, they may also be more trusting and less able to detect scams or other deceitful actions (Scheibe & Carstensen, 2010). Even positivity, when it is oversubscribed, has its downside.

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On the other hand, depression, especially when it progresses beyond an occasional blue mood, is a common disorder among all ages of adults (described in more depth in the atypical changes of aging section). Clinical depression tends to have a negative impact on general health as well as cognition. Jeste, Depp, and Vahia (2010) found that individuals with the diagnosis of clinical depression tended to exercise less, become more socially isolated, and neglect eating in a healthy manner. The good news of this scenario though is that clinical depression is one of the disorders that often can be treated successfully. Both antidepressant medications and psychotherapy have been shown to be helpful (CDC, 2016a, 2016b; Chand & Grossberg, 2013). At least one study demonstrated that Cognitive Behavioral Therapy, which helps people reframe their negative or destructive thoughts, when adapted to the needs of older adults, worked even better than the standard treatment (Chand & Grossberg, 2013). Emotionally well older adults tend to be more active, more optimistic, more resilient, more socially engaged, and tend to self-perceive themselves as being healthier (Jeste et al., 2010). There is also evidence that persons who consider themselves optimistic, tend to live happier and longer lives (Adams, 2016; DuBois et al., 2015). Socialization and Sleep

The last aspect of the PACES program is “S,” which stands for two important brain health promoters: social engagement and sleep. Human beings are not meant to be isolated on their own; they are social beings who do best when they have at least one significant and positive relationship with another being (Cacioppo & Cacioppo, 2014). Currently, one may wonder if online communication and relationships are just as effective as face-to-face encounters. A study conducted by Teo et al. (2015), using the Health and Retirement national data set, found that face-to-face social interactions were preferred, and such encounters with family and friends played a significant role in preventing depression. Physical limitations, sensory declines, and the loss of colleagues may make getting out socially more problematic. Healthcare professionals can assist their older clients to engage with others in a positive way rather than isolating themselves. Isolation is associated with loneliness,

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depression, poor health behaviors, and overall worse health with shorter life spans. Furthermore, executive cognitive skills are more likely to be impaired in individuals who are lonely and isolated (Cacioppo & Cacioppo, 2014). Assistance for these elders may involve finding and procuring resources (such as transportation or available local activities) or helping to set and meet personal goals related to socialization.

Historically, sleep has been viewed as a passive activity and sometimes considered a waste of potentially productive time. More recently, the evidence has been mounting that adequate sleep is essential for day-to-day functioning, and even more important for optimal cognitive functioning (Malhotra & Desai, 2010). Wilckens, Woo, Kirk, Erickson, and Wheeler (2014) found that consistent and healthy sleep patterns are needed for the consolidation of memories (thus improving memory performance). Adequate sleep promotes brain plasticity and helps the person work through any unresolved daily conflicts. People who do not get adequate sleep do not learn as well or as quickly, and demonstrate decreased insight, memory, and problem-solving (Malhotra & Desai, 2010). Sleep disorders and interventions are considered in more depth in Chapter 9. The relationship between positive sleep patterns and better cognitive performance has been established. However, the causal relationship remains muddled: One wonders, do conditions associated with cognitive impairment (such as dementia) cause one to have poor sleep patterns or do poor sleep patterns contribute to the disease process? (Mattis & Sehgal, 2016).

Following the PACES program does not guarantee high levels of cognitive performance, but the evidence provided does suggest that consistently following a general holistic health plan can certainly decrease the risk factor for the onset of atypical cognitive decline.

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▶ Atypical Changes of Cognitive Aging Mild cognitive changes that do not significantly interfere with daily performance are typical as people age. Speed of processing does tend to decline, along with decreases in certain aspects of memory (such as working, short-term, or episodic memory), and more difficulty tends to occur tuning out distractions, especially during more complex tasks. These changes are normal. Atypical changes of cognitive performance start at one end of a continuum with mild changes (minor neurocognitive disorders), which only subtly impact daily performance and end for some at the other end of the continuum with major debilitating cognitive changes (major neurocognitive disorders). Dementia or major neurocognitive disorders are not a normal or typical part of the aging process. (The continuum, related specifically to cognition, is explored later.)

Risk Factors for Cognitive Decline Risk factors for cognitive decline in old age include diabetes, smoking, hypertension, sedentary lifestyle, lack of engagement in cognitively challenging tasks, high cholesterol levels, and depression (Mayo Clinic, 2013), whereas higher levels of education, innate intelligence, and intact sensory abilities are associated with better cognitive performance in old age (Zec, 1995; Wilson et al., 2009). These factors associated with worse or better performance over time tend to be either fixed or modifiable. While the genetic factors (e.g., race, gender, innate intelligence) cannot be changed, people can influence many factors related to cognitive performance, as described through the PACES program earlier.

Minor Neurocognitive Disorders (Mild Cognitive Impairment [MCI]) The Diagnostic and Statistical Manual, 5th edition (DSM-5; APA, 2013), defines what is commonly known as MCI as the diagnosis of minor neurocognitive disorder (NCD). People with

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MCI can complete their ADLs, but might note decreases in memory or optimal performance in complex tasks such as IADLs (e.g., home management, taking care of finances). Approximately, 1-2% of persons age 65+ develop MCI every year. While it is difficult to determine the exact prevalence of MCI (due to it often not being formally diagnosed), the range for persons age 65+ is 5-40% (Roberts & Knopman, 2013). Langa and Levine (2014) estimate the prevalence at 10-20%, with men seemingly more impacted than women. Not only does the risk of developing MCI increase with age, but individuals with the most common type of MCI (which includes decreased memory performance) also are more likely to have their cognitive impairment convert to dementia. The risk factor is 8.5 times higher for persons with MCI compared to their peers without cognitive impairments (Alegret et al., 2014). One estimate of the conversion rate of MCI progressing to dementia is approximately 10-15% per year (Roberts & Knopman, 2013). Despite this dire fact, the good news is that a meta- analysis of various cohort studies conducted by Mitchell and Shiri-Feshki (2009) found that over a 10-year period, the majority (69%) of individuals diagnosed with MCI had not progressed to having the diagnosis of dementia. An even rosier prognosis is that a significant portion of persons with MCI (about one-third of persons diagnosed) converted back to typical cognitive functioning (Sachdev et al., 2013; Gao et al., 2014).

Malek-Ahmadi et al. (2012) determined that four questions were most predictive of amnestic MCI (involving memory impairments; FIGURE 8-4). These are:

1. Does the person have trouble remembering the date, year, and time? (most predictive)

2. Does the person repeat questions/statements in the same day?

3. Does the person have difficulty managing finances?

4. Does the person have a decreased sense of direction?

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FIGURE 8-4 Mild cognitive impairment disorders are often compared to missing puzzle pieces, which represent cognitive impairments such

as memory loss. © Carla Francesca Castagno/Shutterstock

Overview of DSM-V Major Neurocognitive Disorders Cognitive decline is occurring more frequently, primarily because people around the globe are living longer. Cognitive deficits can be described on a continuum from mild (minor NCDs, which entail slight forgetfulness and slight slowing of mental processing, both of which do not interfere significantly with routine day-to-day activities) to late stage dementia (major NCDs, which in the end can rob the affected persons of their will and capacity to stay alive). In the following sections, we will explore this cognitive continuum.

As stated in the segment on minor NCD, older adults with this diagnosis are more likely to convert to more serious major NCD (e.g., dementia), but also many will not decline further and may even revert back to typical cognition. Since intact cognition plays a major role in human functioning, generally the major NCDs affect life relatively more than the mild disorders. The major disorders, often commonly referred to as dementia, relate to several different diagnoses. Alzheimer's Disease

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Alzheimer's disease (AD) is the most frequent diagnosis under the umbrella of major NCDs. AD involves a significant decline in learning and memory as well as a continuing decline in cognition (sometimes with periods of plateaus). Most with AD also display behavioral and psychological changes (APA, 2013, pp. 611-612). Approximately, 5.5 million people in the United States (most of whom are over age 65) are living with AD, and worldwide 47 million people are affected (Alzheimer's Disease Association, 2017). While overall one out of nine people over the age of 65 (approximately 11% of the population) have the diagnosis of AD, the level of prevalence rises to one out of three (approximately 32%) after the age of 85 (Alzheimer's Disease Association, 2016; Gardner, Valcour, & Yaffe, 2013). However, it is crucial to understand that AD is not a part of typical aging, even though 59% of people mistakenly think that it is (Alzheimer's Disease Association, 2017). Ironically, AD and several other NCDs are unintended gifts associated with the vast scientific progress that has occurred over the past century. As more people live longer, more of these older people are getting dementia. While the prevalence does increase with advancing age, it never becomes an inevitable diagnosis for the majority of older adults even among the oldest-old.

Some key characteristics are outlined in TABLE 8-3, although each individual is different and will not display all the characteristics, any set pattern, or any specific level of traits.

TABLE 8-3 Alzheimer's Disease Symptom Progression

Initial End-Stage

General behavior Indifferent; may be delusional or depressed; may deny problems

Withdrawn, agitated, mood may change abruptly

Language Normal or mild word finding difficulties

Severe impairment, words may be meaningless, “word- salad”

Memory Mild short-term Unable to test

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deficits

Orientation Fully oriented (A&O × 3 or 4)

Oriented to self only (A&O × 1)

Reasoning Decreased abstract reasoning and problem-solving; decreased executive functioning

Unable to test

Personal care/ADL skills

Inattention to detail, but able to complete basic personal care

Dependency, may show fear of bathing

Instrumental ADLs

Slight impairment, carelessness, decreased safety awareness, may need supervision

Unable to complete

Mobility Normal Impaired, may not be able to walk or transfer independently

Posture Normal Flexed, often preferring a fetal position

Range of motion/movement

Normal or within functional limits

Increased muscle tonus; contractures are common

Visuospatial skills

Slight visual perceptual changes (e.g., decreases in navigation skills and visual memory

May have hallucinations and delusions; poor visual memory and topographical orientation

APA (2013).

ADLs (activities of daily living) include bathing, dressing, self-feeding, grooming, and

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basic self-care.

IADLs (instrumental activities of daily living) include home management, money

management, care of others, and meal preparation.

A contracture is defined as a decrease of 50% or more of normal passive range of motion.

It is a painful condition affecting many in long-term care settings, including more than

three-quarters of patients who can no longer walk (Souren, Frensses, & Reisberg, 1995).

(Possin, 2010).

Data from Ham (1995); Morris (1993); Cole (1995).

AD progresses through three stages: mild, moderate, and severe. Because there is no cure, and medications are only marginally effective, the current emphasis of medical providers is to prolong the first two stages while the person generally is still physically capable and still the same person. Reisberg (1988), who developed the stage theory of AD, demonstrated that the stages often emulate a reverse developmental pattern (TABLE 8-4).

TABLE 8-4 Overview of the Functional Assessment Staging for AD

Stage (AD)

Skill Level/Behavioral Manifestations

Helpful Hints

1 (Typical Aging)

Normal adult behavior and cognition

Preventative care (such as the PACES program)

2 Minor memory problems

Prevention; engage in new learning

3 Performance on the job declining; may get lost easily; more disorganized

Reminders may be helpful; begin to simplify routines; stress management

4 Difficulty with IADLs (e.g., finances, complex meal management, driving)

Build set routines; family and friend support is needed; build the person's legacy

5 Can do ADLs but may Support what person can

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have difficulty with judgment (e.g., choosing proper clothing)

do; simplify routine; allow more time; review photo albums (reminisce)

6 Difficulty with ADLs such as dressing, bathing, and toileting

Promoting strengths—what the person can do (e.g., eating finger foods, even if this takes longer)

7 (End- stage AD)

Incontinence, limited communication, physical decline, may prefer fetal position

Engage senses; gentle touch; music; movement (though not forced)

©1984 by Barry Reisberg, M.D. All rights reserved. Reisberg, B. Functional Assessment

Staging (FAST). Psychopharmacology Bulletin. 1988:24: 653-659.

Frontotemporal NCD

Frontotemporal NCD, similar to AD, is also insidious in its onset and has behavioral or language variants. Although not nearly as common (only 2-10 people per 100,000), frontotemporal NCD when it does occur, is more frequently found among individuals under age 65. Only 20-25% of cases are older. The behavior that is commonly seen may be manifested as disinhibition, apathy, loss of social skills such as empathy for others, perseverative behaviors, and/or hyperorality (e.g., changes/increases in food intake or substance misuse). The language variant, while demonstrating general features of dementia as well, also involves decreases in language skills (APA, 2013, pp. 614-615). Dementia with Lewy Bodies

Dementia with Lewy Bodies (now named Neurocognitive Disorder with Lewy Bodies [NCDLB]; APA, 2013) also has a gradual onset and course. Cognitive performance may fluctuate more with this diagnosis, even seemingly normal at times, and people with NCDLB tend to have more perceptual disturbances (such as visual hallucinations), especially if comparing diagnoses early in the disease process. NCDLB may account for up to 30% of all the dementias. Prior to being diagnosed, the

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person may display times of confusion or delirium (APA, 2013, p. 619). Parkinson's Disease with Dementia

Yet another NCD is due to Parkinson's disease (PD), which can be either minor (mild) or major (serious). Major NCD due to PD is explored here in juxtaposition to the other dementias. Parkinsonian dementia (as it is often known) also tends to have an insidious onset, but one primary difference between this and AD is that the cognitive impairments in the PD variation take place after the physical symptoms of PD have been well established. PD impacts proportionately more men than women and has been diagnosed in approximately 3% of individuals age 85+ (APA, 2013, pp. 636-637). A common feature of PD is hallucinations, experienced by 30-60% of persons with PD (Llorca et al., 2016). Although visual hallucinations (especially the feeling that there is someone just to the side or behind the person) are the most prevalent type of hallucination, up to 30% of individuals with PD have multimodal hallucinations (combination of visual, auditory, olfactory, etc.). According to Llorca et al. (2016), who analyzed the repercussions of these hallucinations on PD patients, these symptoms have less impact on quality of life than for people with schizophrenia.

Working with Persons Who Have Major NCD Some general guidelines may be helpful to follow when working with persons who have major NCD (dementia). Again, remember that these are suggestions only; what works for one may have the opposite impact on another.

Caring and respect are essential, even when the person cannot reciprocate. Healthcare professionals (or anyone) should never speak about persons with dementia in front of them while ignoring them as if they were not there. The behavior of persons with AD and other NCDs may try your patience even as a professional, but controlling your emotions is crucial. Remember that the person is not intentionally trying to provoke you. Soothing music may defuse the intensity of an

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uncomfortable situation and foster relaxation. A sense of humor, so that you can laugh together, also can be extremely helpful, although it is important for the person not to feel that you are laughing at him or her. Diversion (or engagement in occupation) may help to calm a stressful situation, including:

Involvement in simple (not childish) activities (some favorites are doing arts together—making cards, bird feeders, and terrariums) Playing games, playing or enjoying music, and singing songs they have enjoyed formerly (FIGURE 8-5) Drawing, writing, or painting (providing assistance, but only as needed; perfection is not the goal) Looking through old photograph albums; creating albums or scrapbooks for the future Reminiscing (“Tell me about …”; Tamura-Lis, 2017) Involving them in tasks or parts of tasks they enjoy, for example, helping with meal preparation or taking care of or just interacting with a pet

FIGURE 8-5 Games that make a person think and strategize may have a positive effect on cognitive performance.

© Plamens Art/Shutterstock

A method that has been recently adapted to work with persons who have AD (and other major NCDs) is improvisation, using techniques such as meeting people with AD where they are at, entering their world, and “going with the flow” rather

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than trying to have individuals with AD enter your world. A helpful TEdMed talk that may assist healthcare professionals in developing their Improv skills can be found at www.youtube.com/watch?v=GciWItvLo_s (Stobbe & Carter, 2016).

Several books are available for individuals who want to improve their ability to work with older people who have dementia. A few examples are Creating Moments of Joy Along the Alzheimer's Journey: A Guide for Families and Caregivers by Brackey (2017); A Dignified Life: The Best Friends Approach to Alzheimer's Care by Bell and Troxel (2002); The Best Friends Book of Alzheimer's Activities (Volumes I and II; Bell, Troxel, Cox, & Hamon [2008]); and Talking to Alzheimer's by Strauss and Khachaturian (2002). TABLE 8-5 offers some more specific, though not prescriptive, suggestions as well.

TABLE 8-5 Major NCDs: Problems and Potential Solutions

Functional Problem Area

Potential Solutions

Decreased self- care skills (ADLs)

Offer supervision Simplify clothing/environment Gently encourage person to do as much as possible without nagging Remove safety hazards Obtain an occupational therapy referral

Decreased involvement in daily activities

Encourage involvement in what person can still do well Praise successes and have patience Try safe, simple repetitive chores (especially together) Offer items of interest Referral for occupational therapy

Wandering Take walks together in safe areas Purchase identification bracelet or GPS

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device Alert neighbors Remove obstacles indoors If balance is decreased, obtain physical therapy referral

Impaired communication

Speak slowly and calmly; do not yell Give simple directions, one step at a time Use repetition as needed Remain nonconfrontational; arguing will not help Obtain speech therapy referral

Sleep disturbance Establish a bedtime routine Make sure person gets enough exercise/activity during the day Limit liquid before bedtime Encourage toileting immediately before bedtime Omit obstacles in bedroom to bathroom route or purchase bedside commode A back rub may promote restful sleep

Problem Behavior

Possible Solutions

Inappropriate behavior

Always treat person with dignity and respect Divert person to another activity Watch for signs of overstimulation and try to avoid these situations Listen and respond to the feeling behind the words being said rather than the words themselves Ask for help (e.g., from team, doctors, support group, adult day care) Use humor Do not ignore requests for assistance

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Use improvisation (“yes, and”)

Anxiety and/or agitation

Structure environment Establish daily routine with lots of opportunity for structured activities Promote the feeling of security Sensory issues, refer to occupational therapy Consider referral to social work/counseling

Anger Offer a drink, a snack, or a favorite item Do not confront, tease, or argue with the person Listen and divert to new topic if possible Limit stimulation (or overstimulation) Remove from disruptive environment Take care of your own safety

Data from Cole (1995); Colorado State University (1989); Gwyther (1998).

Comparing Dementia with Depression and Delirium Both clinical depression and delirium are sometimes confused with dementia, even though both tend to have more rapid onset, especially delirium. Often, one condition can be superimposed on another. These conditions are described later. TABLE 8-6 describes some of the contrasting features.

TABLE 8-6 Comparing and Contrasting Dementia, Depression, and Delirium

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Modified from Foreman, Fletcher, Mion, Simon, & Faculty (1996). Table 1, p. 229;

Beers & Berkow (2000).

Depression

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Clinical depression impacts adolescents and adults of all ages. Overall, reported depression occurs in 6% of males and 10% age12+ (CDC, 2012). Perhaps, surprisingly the percentage of people who report depression is higher among middle aged adults (7% of males and 12% of females 40-59 years old), compared to persons over age 60 (5% of males and 7% of females; CDC, 2012). One consideration for the lower apparent prevalence of (reported) depression among older adults may be due to the cohort effect of being members of the stoic generation that as a cohort may believe in taking care of themselves and not wanting to admit (or report) the negative feelings associated with depression. Depression is most prevalent in women (1.5-3- fold higher than men), minority groups, persons with less than a high school education, previously married people, individuals unable to work or who are unemployed, and persons without health insurance (CDC, 2016a; APA, 2013, p. 165).

While major depressive disorder (clinical depression) is not a normal part of growing old, it is a common co-morbid condition in individuals diagnosed with dementia (up to 69%), and potentially can be viewed as both a consequence of having, as well as a risk factor for getting dementia (Muliyala & Varghese, 2010). The number of people with depression rises sharply in hospitals and long-term care facilities, where the prevalence of clinical depression reaches up to 35% (Thakur & Blazer, 2008). Despite this high prevalence of depression in vulnerable older adults, depression as a clinical condition often goes unnoticed and therefore undiagnosed. This is an especially heart-wrenching fact considering that depression is often amenable to treatment (APA, 2013; Mayo Clinic, n.d.).

The DSM-V (APA, 2013) offers the following as common signs and symptoms of a major depressive disorder, especially when these occur at least over a 2-week period and indicate a change from the person's typical functioning and demeanor. (For a full and detailed list, see APA, 2013, major depressive disorder, pp. 160-168.)

Subjective report of a “depressed mood most of the day, nearly every day” (APA, 2013, p. 160). The person may feel sad or appear tearful. The person may complain of feeling

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hopeless. (This may be the easiest symptom to recognize, but because we all have “off” days, it may go unnoticed.) Sleep disturbances. Disinterest in former valued activities. Agitation, listlessness, loss of energy (enough to negatively impact daily occupations). Feelings of worthlessness or guilt. Thoughts of death or suicidal ideation. Decreased cognition such as indecisiveness (APA, 2013, p. 161). Related to depression, Thomas and O'Brien (2008), also include potential changes in cognition such as impaired episodic and working memory, decreased language processing, decreased executive skills, and delayed processing speed.

If the symptoms are severe enough to be concerning, a referral to the person's physician is in order. As a healthcare professional, you may need to confer with the doctor and/or healthcare team to let them know of your concern while being careful not to violate patient confidentiality. A crucial point to keep in mind is that older people do not tend to “fake” the signs and symptoms of depression (Juratovac, 1996). Suicide in Older Adults

Despite societal beliefs to the contrary, feeling down and depressed is not a natural or normal consequence of the aging process. Unusual mood disturbances must be taken seriously. Suicide has generally been listed in the top 10 leading causes of death in the United States. The highest suicide rate (19.6 per 100,000 in 2015) was among persons aged 45-64 years, but nearly the same rate occurred in people age 85+ (19.4 per 100,000; American Foundation for Suicide Prevention, 2017). Specifically, White males age 65 and over comprise over 80% of all suicides in late life. No demographic is immune to the devastating effects of suicide or suicide ideation (National Institute for Mental Health, 2017). Fixed risk factors for suicide in the United States include being male (currently 4-1 ratio), single, older, and having a family history of suicide (CDC, 2015). Besides major depressive disorders, other risk factors for suicide include psychiatric illness (schizophrenia,

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schizoaffective illness, and delusion disorder as well as anxiety disorders and substance abuse), chronic physical illness and pain, decreased functional capacity, and social disconnectedness of the older person from his or her family, friends, and community (Conwell, Van Orden, & Caine, 2011; Cukrowicz, Cheavens, Van Orden, Ragain, & Cook, 2011).

Healthcare professionals need to be aware of the potential for suicide and give serious consideration to any indication that the person may be thinking about it. Indicators of potential suicide include not only past history of attempts, but also threats of suicide, substance misuse, sudden feelings of euphoria (especially after feeling depressed), giving away possessions, bodily complaints, and persistent bereavement (APA, 2013, pp. 789-790; Welton, 2007). Older adults may be less likely to seek mental health services, but when they seek medical care, they may report only somatic symptoms related to depression and suicidal ideation (e.g., insomnia, loss of appetite, or gastrointestinal symptoms; Neufeld & O'Rourke, 2009).

Although it is beyond the scope of this text to discuss the ethical issues raised by suicide undertaken to escape excruciating, irreversible pain, and/or terminal illness, it suffices to reiterate that depression, which often precedes a suicide attempt, is generally amenable to treatment through medication management, psychotherapy, and/or electroconvulsive shock therapy. Our job as healthcare professionals is to be on guard for signs and symptoms of depression and potential suicide, to support and educate the person about basic treatments, and to refer the person to an expert who can begin the treatment protocol. A toll-free hotline available 24/7 is offered by the National Suicide Prevention Lifeline at 1-800-273-TALK (8255); (NIMH, 2017). Delirium

Delirium is a common occurrence for older adults who have been hospitalized, have undergone major surgery, or who are overmedicated, but it is not commonplace in a healthy aging population. However, up to 30% of people admitted to the hospital without delirium will develop it during their hospital stay (Vasilevskis, Jan, Hughes, & Ely, 2012). Generally,

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delirium is a transient state of fluctuating cognitive abilities often characterized by hallucinations, decreased ability to focus, increased confusion, and poor memory performance. The symptoms of delirium can be difficult to recognize and can be mistaken for dementia or depression (Flinn, Diehl, Seyfried, & Malani, 2009). A healthcare professional may be able to ease the tense situation experienced by families by explaining that the state of being delirious is generally temporary in nature and by educating the family about the side effects of the patient's current medical procedure or medication. Nonetheless, the development of delirium is associated with increased mortality, increased length of stay in the hospital, increased rate of discharge to long-term care facilities, and increased medical complications. Cognitive decline is also a risk for people who have experienced delirium (Flinn et al., 2009).

Risk factors for delirium include age greater than 70 years, self-reported alcohol abuse, poor cognitive status, visual impairment, depression, poor functional status, malnutrition, metabolic abnormalities, infections, noncardiac thoracic surgery, or abdominal aneurysm surgery (Vasilevskis et al., 2012; Flinn et al., 2009). Any change in mental status should be reported to and addressed by the healthcare team. Post-operation delirium research is ongoing. Medical teams are looking for ways to reduce the incidence of delirium by developing better post- operation clinical pathways and to ensure that the specific medications used are appropriate for older adults. In addition, adequate sleep patterns while in the hospital are encouraged. Also, the healthcare professional should ensure that sensory equipment (e.g., hearing aids and/or glasses) are clean and available and provide desired level of appropriate sensory stimulation and activities (Flinn et al., 2009). Furthermore, family collaboration is crucial if delirium is suspected, because the family can provide information regarding the older adult's baseline behavior/cognition and may be the first to detect a change (Keyser, Buchanan, & Edge, 2012). Prevention, detection, and management are the solutions for delirium, with prevention being the best first line of defense. See Table 8-2 for information about the CAM tool to assess for delirium. Delirium may be concurrent with either or both dementia and depression.

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A person may have one, two, or all three of these conditions simultaneously. Agitation may be present in all three (Table 8- 6).

Related Potentially Reversible Disorders Sometimes, what appears to be dementia is actually another medical disorder in disguise. Gaining a basic understanding of some of these common disorders may help healthcare professionals decide when to make referrals. Some of the more common ailments with signs and symptoms similar to dementia are briefly described here. Malnutrition

Deficiencies of the B-complex vitamins, vitamin C, zinc, magnesium, folic acid, and protein, or malnutrition can cause behavioral disturbances, including those implicated in the diagnosis of clinical depression and dementia (Patenaude, 1996). Vitamin B deficiency has been linked specifically to dementia symptoms. Eastley, Wilcock, and Bucks (2000) found that vitamin B treatment did not reverse dementia, but it did improve language and frontal lobe (executive) functioning to a degree. Cerebrovascular Accident or Stroke

Cerebrovascular accident (CVA) or stroke, especially small infarcts with limited accompanying functional declines, may cause behavior disturbances much like those brought about by a major depressive disorder or AD. In fact, a rather common type of dementia (multi-infarct dementia) is caused by a series of small strokes. Hypothyroidism

Hypothyroidism slows metabolic processes, which causes the affected person to respond slowly and to be lethargic. Failure to Thrive

A related syndrome is described as failure to thrive (FTT). An insidious deterioration in functioning that is not related to a specific disease, FTT can be caused by depression, dementia, chronic conditions, or medication/drug reactions. Social isolation, low socioeconomic status, and functional dependency

12

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all are predisposing factors of FTT. Case examples are common; perhaps, we all know of someone who just seemed to wither away prior to dying. Common features of FTT include weight loss resulting from lack of appetite, social withdrawal, lack of concern about appearance, memory loss, impaired ambulation, and incontinence (common in nearly half the cases described; Palmer, 1990). People with this syndrome simply seem to be giving up on life. A referral to a geriatrician (a medical doctor who specializes in working with older adults) is usually appropriate for people with (potential) FTT. Urinary Tract Infection

Urinary tract infections (UTI) are among the most frequently diagnosed infection in older adults, especially women. UTIs are the most common infection in the long-term care setting, accounting for one-third of all the infections there. About 10% of women age 65+ have had a UTI in the past year (Rowe & Juthani-Mehta, 2013). Symptoms include frequent, often painful voiding, potential back pain, and malaise (perhaps flu- like symptoms). UTIs occur more often in individuals who have diabetes or eat a high sugar diet, especially without adequate hydration. In older adults, particularly persons who are institutionalized or have other health issues, atypical symptoms of UTI such as mental status changes and confusion are also common (Rowe & Juthani-Mehta, 2013). Lack of Oxygen

Certain disorders (e.g., lung disease, pneumonia) are associated with a lowered ability of the body to effectively complete oxygen uptake. Hypoxemia refers to insufficient oxygen levels in the blood. Oxygen saturation levels (O Sat) for most people should be 95% or higher. The saturation level is measured by a pulse oximeter that is placed on the finger. Although a physician must determine what is abnormal for any one person, generally hypoxemia can lead to tissue damage as well as mental confusion, including impaired judgment and problem-solving ability. Therefore, older adults with low blood oxygen levels may appear confused, as if they might have the diagnosis of dementia. Fortunately, administering oxygen, often through a

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nasal cannula per physician's orders, may improve mental status quickly (Figure 8-6).

FIGURE 8-6 Oxygen being administered through a nasal cannula. © Lidea Studio/Shutterstock

Substance Misuse and Abuse

Inadvertent misuse or deliberate abuse of substances (such as alcohol, prescriptions, and over-the-counter drugs) tends to be viewed as a problem of the young, but this is a growing issue among older adults (Bogunovic, 2012). Although older adults make up about 13% of the total U.S. population, they consume at least 25% of the prescribed medications, with 50% taking 5 or more medications and 20% taking 10 or more (Sparacino, 2013). Friedman and Williams (2015) estimate that 20-25% of older adults drink more than the recommended amount (one drink per day or less) and approximately 3-5% fall into the more serious category of heavy consumption (i.e., alcoholic). This level of consumption leaves room for many drug-to-drug or drug-to-alcohol interactions which are often unreported or ignored. The problem with paying so little attention to this situation is that excess alcohol or drug use (including prescribed medications) can cause cognitive problems such as slurred speech, drowsiness, and confusion, as well as exacerbate the effects of any current cognitive impairments (such as those wrought by the minor or major NCDs) or impairments in hearing and vision (Sparacino, 2013). The Substance Abuse and Mental Health Services Administration (SAMHSA; samhsa

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.gov) recommends brief substance use/misuse screening for everyone (including older adults) through the SBIRT screening program using tools such as the AUDIT. (For more information, visit www.integration.samhsa.gov/clinical -practice/sbirt.)

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▶ Personality Development Personality is what makes a person a unique individual. Each of us has a set of character traits, attitudes, habits, and emotional tendencies that distinguish us from everyone else. These dispositions can be intimated by our appearance (e.g., tattoos, clothing styles, or level of care taken in grooming), but are essentially inner characteristics causing us to behave as we do. To a degree, one's personality also predicts life events such as quality of relationships, ability to accept change, employment choices and successes, happiness, and health and mortality (McAdams & Olson, 2012; O'Shea, Dotson, & Fieo, 2017). Many studies have explored the development of personality in youth and into young adulthood, whereas fewer studies have concentrated on personality evolvement during later adulthood. The question posed is whether significant personality change takes place during old age (in both healthy adults and individuals afflicted with disease).

There are many theories on personality, yet the well-known theorists (e.g., Maslow, Piaget, Freud) devoted little attention to the personality of older people. One theorist who may already be familiar to many readers is Erik Erikson, who initially proposed eight stages of psychosocial development (Erikson, Erikson, & Kivnick, 1994). Originally, the final stage was integrity versus despair. Erikson viewed people who were successful in this stage as being able to develop a sense of pride in their past accomplishments. They have a sense of satisfaction and judge that their lives have been worthwhile. Others, who do not successfully complete this stage, experience instead a feeling of despair not only about the course of their lives thus far, but also because they do not believe that they have enough time left to improve the course of their life. Overall, Erikson et al. (1994) proposed that this then-final stage of life was both a positive and integrating time for well older adults. In an updated version of personality development, Erikson and Erikson (1998) included a ninth stage in their theory:

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gerotranscendence, which is associated with wisdom and a moving away from early and midlife materialism. Ardelt (2008) described this “transcendence of the self” as a move toward selflessness, and increased compassion and reflection, all embodying the characteristics of a truly wise person.

Five-Factor Model of Personality Social scientists are beginning to show more interest in the final years of life with regard to personality development. The trait theory espoused by McCrae and Costa (1990) is perhaps the most widely known with a continuum on five different aspects of personality. Their five-factor model of personality is as follows:

1. Neuroticism: Associated with hostility, depression, anxiety, and impulsiveness

2. Extraversion: Associated with a high level of energy and being outgoing in social situations

3. Openness to experience: Associated with open- mindedness, curiosity, and adjustment to change

4. Agreeableness: Associated with affection, compassion, and being altruistic

5. Conscientiousness: Associated with a strong commitment to goals and being a principled person

Personality Stability

When studying this model, there are three key questions that arise. One is whether these traits are stable over adulthood and into old age. Research conducted on these traits has determined they have the greatest instability between the ages of 17 and 35 years, and then they tend to become more fixed. When these traits were studied in older people over 3- and 6-year intervals, strong stability of all five traits was found using both self and spousal reports. Even when the intervals between testing increased to as much as 50 years, stability coefficients remained statistically significant, with life events exerting little overall influence for major change (Costa, Herbst, McCrae, & Siegler, 2000).

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Other evidence also supports the relative permanence of personality traits in typically aging older adults. For example, test-retest correlations of optimism scores have been found to be high (over 0.7) over a 10-year period, even when considerable life change was occurring in the participants' lives (Carver, Scheier, & Segerstrom, 2010). Hayflick (1994), in citing the results of the Baltimore Longitudinal Study of Aging (BLSA), maintained that personality traits remain essentially the same throughout the life span in typically aging adults, although most people older than age 50 begin to prefer slower paced activities. This is a valuable piece of information for healthcare professionals who work with older people. Pacing healthcare intervention for the convenience of the older clients rather than the provider is essential for good care (and perhaps, getting more difficult in these hectic times for health care). Personality Differences by Cohort

The second key question that arises when examining personality is whether there are differences among groups of different aged individuals or how old age and gender might impact personality. Weiss et al. (2005) found few differences in the five traits based on age when looking at more than 1,000 Medicare patients from ages 65-100. In the Weiss study (2005), the older participants did show a higher level of agreeableness, which may have been the result of a cohort effect or due to higher death rates among adults with lower levels of this trait (individuals with an intense “type A” personality have proportionately more heart disease, which ultimately could lead to an earlier death).

Research has shown that men, as they get older, may become more nurturing and open about their feelings, whereas women may become more assertive, confident, and comfortable with themselves. Social scientists believe these changes could be influenced by hormonal fluctuations, perhaps causing a diminution of the character distinctions between the genders (Carver et al., 2010). Levels of agreeableness and conscientiousness also may tend to increase with age (at least until age 70) for both genders (Harvard Mental Health Letter, 2006).

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In the longitudinal Lothian study out of Scotland, Mõttus, Johnson, and Deary (2012) reviewed the five-factor traits in people in their 70s and 80s extensively. They found that women's emotional stability declined in their 70s, and that there was a gender differential for the trait of agreeableness. The level of agreeableness tended to decline in older women, whereas for men there was an increase of agreeableness in their 70s and no change in persons in their 80s. Mõttus et al. (2012) suggested that mean level changes (of the five-factor model traits) accelerate in old age resulting in “pronounced changes in the ninth decade” (p. 14) not seen in previous decades. More research that examines personality in older adults, especially the old-old, is clearly needed.

In a pivotal study done by Erikson et al. (1994), older people described themselves as more tolerant, patient, open- minded, understanding, compassionate, and less critical than when they were younger. However, many study participants viewed both themselves and the other older adults in the study as more set in their ways. This seeming contradiction was explained by the suggestion that as people age, they not only increasingly integrate their own personal style, but they also can gain a new understanding and tolerance of others' behavioral styles. Malleability of Personality Traits

The third, and perhaps most important, question for healthcare providers and elders as well is: Can people change their personality traits? Although overall the five factors show stability, nonetheless personality changes can and do occur; but, often study results are not definitive. Wood and Roberts (2006) suggested that personality traits are open systems that are plastic and can be influenced throughout life. Representations of the self, such as one's goals, values, coping styles, and control beliefs, are likely to change over the course of one's lifetime.

Some older adults' personalities change due to disease processes. In these cases, it is crucial to remember that these people are not necessarily still “themselves” and may be acting out due to an illness rather than the behavior being self-directed. Disease processes, especially the major NCDs such as AD,

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absolutely can rob a person of their essential personality, leaving someone quite different in their wake. A helpful maxim to remember is: “Don't blame the person, blame the disease.” Even when working with people who have challenging personality types, compassion is the path of least resistance and the most fulfillment when all things are considered at the end of the day. Demonstrating respect is never out of place, even if acting respectful does not match how you may be feeling toward the person.

Personality Summary Personalities come in myriad flavors, and not all are compatible with one another. As healthcare professionals, we need to make a concerted effort to provide excellent health care or service to all our clients of any age (and personality style). We now have substantial evidence that several aspects of personality seem to improve with age for people who are aging well. Yet, old age, as a stage of life, does not equate with any specific personality traits, especially those often heard on the street (e.g., grumpy [old men], doddering [old woman], stubborn, disagreeable, closed-minded, etc.). Some people may have been this way their whole lives, whereas others become “better with age” (Kersting, 2003, p. 14). Overall, in the realm of personality, there are no definitive answers regarding aging. People who go through typical life development adhere to their personhood throughout life: they remain unique individuals with distinct features, and if they are determined, they can change for the better.

Behavior Change Aging or just continuing to live life does entail inevitable changes, but when people age well, they become more aware of and more determined to take advantage of the positive changes they encounter (e.g., wisdom, maturity, increased self-esteem, increased level of confidence, increased ability to appreciate ambiguity; Carstensen, Fung, & Charles, 2003; Erikson & Erikson, 1998). Well elders also take actions to counteract the negative changes that are often associated with the aging process (potential declines in physical and cognitive realms).

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Older people deserve healthcare professionals who are hopeful, caring, and have a positive attitude that will promote an optimal, individualized aging process.

One is never “too old” to make a positive change in behavior. If a person has the cognitive capacity to set positive health goals, chronological age will not interfere. The naysayers tend to believe that being old is an excuse not to change, but clinical experience has shown that even the “old-old” can make positive health choices, including improving nutrition, exercising to get stronger, improving balance to prevent falls, and quitting smoking to feel better. While sometimes these positive behavior changes do come about through a behavior change strategy known as “dramatic relief” (an intense emotional event such as having a stroke or getting a dreaded diagnosis causes one to immediately reassess current unhealthy behavior; Burbank, Padula, & Nigg, 2000), older adults may decide to embark on change just for the sake of improving their lives.

Healthcare professionals may be familiar with the well- known behavior change theories: the Transtheoretical Model (TTM; for an overview, see Prochaska, Norcross, & DiClemente, 1995) and the Health Belief Model (HBM; Rosenstock, 1974; Jones et al., 2015). Both provide methods of thinking about behavior change and techniques to promote movement toward positive outcomes. In the TTM, behavior change is divided into several steps: from precontemplation, during which the person has not even considered making a change, all the way to termination when the attempted successful behavior change has been integrated into the person's everyday life (Prochaska et al., 1995). Each stage offers the healthcare professional the opportunity to assist the person to move on to the next stage of change. For example, in the second or contemplation stage, the healthcare professional may help the older person to examine the benefits and barriers to making a change (or not). Many strategies (such as stimulus control, self- reevaluation, and consciousness raising; Burbank et al., 2000) can be utilized for people of all ages who may need or want to make positive life changes.

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The HBM was developed in the 1950s and 1960s to explain the reasoning behind why people did not readily embrace the preventative measures offered by the public health service (e.g., vaccinations; Rosenstock, 1974). The HBM sets out to predict health behaviors by assessing the person's self-perceived views on the severity, susceptibility, benefits, and barriers to change (in this case, taking a preventative health measure). The healthcare professional can then work with the client to explore and potentially modify the individual factors that would impact behavior change (i.e., the perceived severity, susceptibility, benefits, and barriers to making the change). For example, the older adult may get the diagnosis of diabetes, and may need assistance weighing the benefits and barriers to changing one's diet. Certainly, the healthcare provider may provide education and support to help the client set healthy goals and embark on more healthy eating patterns.

Recently, improving life satisfaction, as a potential behavior change outcome in old age, has been explored by a number of researchers who have offered community programs. For example, Turner et al. (2017) designed an innovative, eight-week community program based on positive psychology titled “The Art of Happiness,” during which the older participants from a senior center attended group sessions on humor, mindfulness, positive relationships, happiness, and stress management. Outcomes included decreased tension, increased happiness, and decreased symptoms of depression. A related and larger program also involved a novel intervention titled “Lighten up!,” during which the group of elders worked on changing perspectives, also over an eight-week period, with similar encouraging results. The participants learned to recognize their emotions and savor positive experiences (Friedman et al., 2017). As a final example, McCarthy, Hall, Crawford, and Connelly (2017) conducted a randomized controlled trial of an eight-week psychoeducational group with community- dwelling older women with the intention of increasing self-transcendence. The groups included mindfulness, creative activities, and homework.

These types of quality of life-based interventions, based on changing attitudes and perceptions of well-being, are not limited

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to older adults who are community dwelling. For example, Cesetti, Vescovelli, and Ruini (2017) offered a positive narrative intervention group based on fairy tales to nursing home residents, and they also found positive results for improved perceptions of well-being and sleep patterns. These engaging group options offer promise as effective interventions to promote higher life quality and positive behavior change for community dwelling as well as more dependent older adults, although all agree that more research is needed before definitive protocols can be recommended. Motivational Interviewing

One evidence-based technique to support positive behavior change is the use of motivational interviewing (MI). Helping professionals use this approach of communicating to assist clients in becoming experts to manage their own behavior changes in meeting their objectives in their quest toward better health (Miller & Rollnick, 2013). Key concepts include collaboration and compassion, and the use of the primary skills of asking open-ended questions, along with affirmations, reflections, and summary statements. While traditional medicine employs education and advice giving to promote new and healthier patterns of living, MI promotes conversations about ambiguity (“change talk”) and may involve clients of any age setting goals and making self-motivated changes to promote healthy living patterns for themselves. MI practitioners guide and follow rather than direct (Miller & Rollnick, 2013).

Healthcare professionals can appropriately help clients set and fulfill behavior change goals and engage older adults in programs intended to improve well-being. These interventions may help promote an optimal level of life satisfaction in the latter part of life (also see Chapter 1).

As healthcare professionals, our contributions to clients' life quality may be minimal, or by using keen listening skills, client-centered approaches, and creative problem-solving, and/or by making referrals to others who may be able to provide this direct assistance, our input may be invaluable and much appreciated. Healthcare professionals can do their part to promote wellness for people of every age, as all ought to have

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the opportunity to live their best lives (or as is the motto in occupational therapy: everyone deserves to “live life to its fullest”).

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▶ Summary Although change is inevitable throughout life, the essential core of the human being is not likely to be altered by the aging process alone. As people age, if they experience typical aging, they tend to exhibit the following characteristics:

Take longer to learn new tasks and process information a little more slowly Become more forgetful, especially of short-term information Prefer somewhat slower paced activities Retain essential personhood

Many cognitive, psychological, and personality changes can and do occur over time. These changes can be positive, such as when someone makes an effort toward self-improvement by making significant adjustments in lifestyle patterns. Other times, disease, misfortune, or injurious lifestyle choices impose detrimental influences on cognitive functioning, personality, and thus quality of life. Each age cohort becomes more diverse as their ages increase. Although as a group the members tend to show the signs of aging already mentioned, within each age group there are individuals who continue to perform essentially as well as they ever did (or even better) and persons who have succumbed to the “ravages of old age.”

Although no one is guaranteed a long life that includes success or happiness throughout the aging process, everyone can take steps to improve their odds of living well into old age. The PACES program reminds us of the value of having a life purpose, partaking in physical and mental exercise, maintaining close human connections, and pursuing ongoing involvement in challenging and desirable occupations, including the essential and often overlooked occupation of sleep.

By being good listeners, who are supportive and considerate, and by promoting a personal level of independence and desired life change (if the client is motivated), and by making referrals as appropriate, we can help older persons promote healthy brain aging, and remain as productive or

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engaged as they choose. Our goal, as a caring, highly developed society, should be to promote meaningful involvement in life endeavors at a level of challenge fitting the person throughout life, right up until his or her final days.

CASE STUDIES

Case 1: Emma is an 85-year-old African American female who was recently widowed. She lives independently in her small home in a large city. She is fairly active in her community—she likes to attend church, weekly exercise classes, and social outings with her friends. Recently, she has found little interest or joy with leaving her home; this began after a bout of the flu where she was hospitalized for 3 days. She was happy enough with her medical care and was glad to be feeling well enough to return home. However, she finds she has little energy to manage her home, let alone socialize with friends. Her visiting nurse asks her often about her mood, appetite, and sleep patterns. Emma is vague with her responses and says she is “fine.” The nurse requests a social worker to speak with Emma to see if any community services would help her recover and get back to her former routine.

1. What condition does Emma likely have and how can you tell?

2. What risk factors does Emma have for this condition?

3. The visiting nurse requested that a social worker meet with Emma to discuss community services. Who else should Emma meet with and why?

Case 2: Mr. Means was referred to the skilled nursing facility rehabilitation center after his primary care physician noted a decline in functioning since his last visit, even though the only medical issue involved was rather minor surgery. While being evaluated, Mr. Means was unable to complete his self-care skills, even though he had no medical or physical reason not to (other than deconditioning). It turned out that his home health aides, provided by his well-intentioned family, had taken over doing everything for him, even the most basic self-care tasks such as dressing.

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1. What might be transpiring for Mr. Means and why?

2. What might need to happen to get Mr. Means back on track?

Test Your Knowledge

Review Questions

1. What is the primary accomplishment of the ninth stage added to Erikson's theory of psychological development?

a. Developing a sense of pride in your past accomplishments

b. Discovering yourself and finding meaning to your personhood

c. Moving toward selflessness, compassion, and reflection

d. Feeling that you contribute something meaningful to society

2. Alzheimer's disease always involves: a. Memory impairment b. A strong attention to detail c. Language disturbances d. Decreased muscle tonus

3. Rebecca's client, a 75-year-old woman named Gail, tends to be forgetful. Rebecca has been using cuing to help Gail try to recall information during their instruction sessions, but she can see that it is starting to annoy Gail. What is another strategy Rebecca can use to help Gail remember during their sessions?

a. Limiting the presentation of information to verbal instruction

b. Being careful not to be repetitive

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c. Making the material applicable to Gail's life d. Focusing on information Gail would consider

trivial

4. Which is a component of fluid intelligence? a. Language comprehension b. Occupational skills c. Categorization d. Educational qualifications

5. Which of the following is NOT a component of the PACES program?

a. Purpose b. Activity c. Commitment d. Sleep

Learning Activities

1. Think of the role models you know who are at least 65 years old. What personality traits do you appreciate in these older people? How can you ensure that you will have some of these traits when you are older? Do you think one can develop these traits? Why or why not?

2. It may be interesting to interview a few older people. Ask them how they think their personalities and thinking skills have changed over the course of years. How does this compare with the research data? How do you think you will change as you get older?

3. Brainstorm 10 things you want to learn before you die. The list needs to include new learning—you may say travel and that is fine, but what do you intend to learn in your travels? New learning is the most important (e.g., a new sport, dance, language, learning to play an instrument, any skill, etc.). Discuss why new learning is important.

4. Generally speaking, the level of cognition declines as

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one gets older. How can you ensure that this decline will be minimal? List five things that you can personally do to improve your cognitive level.

5. Discuss wisdom. What is it and what makes someone wise? Do you equate being wise with being older? Why or why not? In the United States, how do we view wisdom compared to other world cultures?

6. Discuss depression in older adults. What are some of the reasons that older people become depressed? (Include life events and changes that tend to occur.) What is the prognosis for individuals with clinical depression? How can you (in your own profession) help?

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CHAPTER 9 Functional Performance in Later Life: Basic Sensory, Perceptual, and Physical Changes Associated With Aging Jessica J. Bolduc, DrOT, MS, OTR/L

CHAPTER OUTLINE

INTRODUCTION

VISION Visual Perception

HEARING

SMELL

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TASTE

PHYSICAL CHANGES Range of Motion Strength Endurance Physical Exercise Praxis

PHYSICAL PERFORMANCE Reaction Time Motor Coordination

WORK PERFORMANCE

SLEEP Normal Sleep Impact of Sleep on Older Adults Sleep Disorders

Insomnia Obstructive Sleep Apnea Restless Leg Syndrome/Periodic Leg Movements During Sleep

Treatment of Sleep Disorders

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. List at least four recommendations for healthcare professionals who work with people who have diminished visual skills.

2. Define visual perception and describe how perceptual skills may change as one ages.

3. Describe compensatory measures related to decreased visual perceptual functioning.

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4. Describe how sensory systems tend to change over the course of aging, impacting function.

5. List compensatory measures for each of the sensory changes related to aging.

6. List at least four recommendations for healthcare professionals who work with people who are hard of hearing.

7. Describe the basic physical changes of aging related to range of motion, strength, motor control, and endurance.

8. Discuss how physical changes affect performance in various life skills, including self-care and work.

9. Describe how sleep patterns change with age. 10. Describe the components of interventions related to

sleep disorders, including cognitive behavioral therapy.

KEY TERMS

Agnosia Anosmia Apraxia Cognitive behavioral therapy Contracture Dyspraxia Endurance Hyposmia Insomnia Maximum muscle strength Motor coordination Obstructive sleep apnea Olfaction Perception Praxis Presbycusis Range of motion Reaction time Restless leg syndrome

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Scotoma Senescence Sleep hygiene Sleep restriction Stimulus control

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▶ Introduction Ironically, change may be the only constant in our lives. This chapter explores the sensory, perceptual, and physical changes associated with the aging process. The intent of the chapter is to provide a brief overview of these potential changes and to provide suggestions that may help the healthcare professional in assisting older adults who have experienced these age-related changes in these realms.

Healthcare professionals who are rehabilitation specialists, such as occupational and physical therapists and speech- language pathologists, are the experts in the realm of sensory, perceptual, and physical changes, including how to remediate dysfunction or how to compensate for the problems not amenable to restoration. These professionals are skilled at in- depth interventions to improve functional performance based on extensive professional theories and evidence-based research and practice. Although intended to be helpful to rehabilitation specialists and other healthcare professionals, including students, this chapter is not a comprehensive manual for intervention. Each of the mentioned professions has textbooks focusing precisely on the topics in this chapter. The interested reader can view this chapter as an introduction or review; readers with the skill and motivation can go for more in-depth information through additional reading and education.

In this chapter, the focus is on the typical physical, sensory, and perceptual changes taking place within the aging body, especially as these changes relate to function. Senescence or the process of physical decline due to aging does occur, but often at a slower and more variable rate than is customarily believed.

An important aspect to consider, along with these physical and sensory changes related to aging, is associated performance levels. Even though the described changes are rarely outwardly encouraging, nonetheless daily functioning throughout life can remain adequate or even good given enough determination, good fortune, the right genes, as well as the absence of disease.

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Regardless, it is important to remember that within our growing aging population, approximately 63% of adults aged 65–75, 78% of adults aged 75–84, and 83% of adults 85 and 85+ have multiple chronic health conditions (Centers for Disease Control and Prevention [CDC], 2015). The most common chronic conditions now facing Americans are heart disease, cancer, and diabetes (CDC, 2015). Yet, most persons with chronic conditions are still able to live well and are able to improve their functioning with a little assistance or a bit of education to promote small changes. This chapter starts with an overview of sensation, including vision, hearing, olfaction, and taste followed by an overview of physical changes, physical performance, and sleep. Emphasis is placed on what a healthcare professional needs to know when working with older adults in various capacities.

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▶ Vision Vision typically begins to deteriorate around age 30 although older adults typically are able to maintain an acuity level close to unimpaired vision (20/20) with corrective lenses until about age 88 (FIGURE 9-1; Schieber, 2006). In addition to loss in acuity, the aging eye is vulnerable to diseases that can permanently damage the ability to see. For an overview of common visual conditions that occur in older adults, see TABLE 9-1.

FIGURE 9-1 Corrective lenses often allow older adults to maintain their vision well into their 80s and beyond.

© Syda Productions/Shutterstock

TABLE 9-1 Common Visual Diagnoses and Functional Implications in Older Adults

Disease of the Eye

Prevalence by Age

Functional Implications

Cataracts 50–54 (5%) 80+ (68%)

World appears dull, as if seeing through dusty or cloudy lens; readily amenable to treatment, usually on an outpatient basis

a a

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Age-related macular degeneration (AMD)

50–54 (<0.05%) 80+ (<12%)

Central field vision is impaired, affecting reading and other fine detail work. Reading skills are especially impaired compared to controls when the wording is out of context

Glaucoma 50–54 (<1%) 80+ (<8%)

Loss of peripheral vision, usually gradually; may lead to tunnel vision or total blindness

Diabetic retinopathy (DR)

40–49 (7–31%) 75+ (12–23%)

The person with diabetes and DR has scotomas (i.e., blind spots); visual skills may fluctuate; may be associated with depressed mood

Retinal detachment

10–12.5 of 100,000 population annually (approximately 0.001%), typically between ages 40 and 70

Tearing or separation of retina from underlying tissue that can be caused by trauma or illness

Dry eyes 48–91 (14%) Poor lubrication of the eye due to poor tear production

Data from Schieber (2006). Lott, Schneck, Haegerstrom-Portnoy, Hewlett, & Brabyn

(2017). Eye Diseases Prevalence Research Group, Diabetic Retinopathy Subsection

(2004). Larkin (2009). American Optometric Association (2013). Gayton (2009).

While diseases can rob people of perfect vision, other visual skills known to show a decline with advancing age are:

Visual processing speed Sensitivity to light Ability to see well in dim light

a a

b

a a

c

d

e

f e

a b

c

d e f

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Near vision, especially problematic for reading small print Upward gaze without moving head Contrast sensitivity, separate from visual acuity Color sensitivity, especially along the blue–yellow axis of color Dynamic vision, which includes:

Smooth visual pursuits of a moving target (such as watching the movement of a tennis ball), especially with distractions or with increased velocity of targets. Visual tracking or saccades, the small ballistic eye movements needed for reading (although decline with age is less than for pursuits; Schieber, 2006). In fact, older adults use anticipatory saccades (or predictive visual tracking) to maintain their tracking skills well into old age (Maruta, Spielman, Rajashekar, & Ghajar, 2017).

Visual skills that tend to be preserved with age include basic color vision and the ability to maintain fixation on a target. After age 70, remaining visually fixated on an object decreases with age (Wolters Kluwer Health, 2014). The healthcare professional working with older persons may offer several simple compensatory measures to mitigate the effects of decreased eyesight. TABLE 9-2 outlines some of these measures. Although the measures can be helpful, it is not an inclusive list nor can it be expected to address the needs of all clients. If the older person is having difficulty with daily tasks because of impaired visual skills, a certified low vision therapist (CLVT; i.e., a person who works exclusively with blind persons and persons with visual impairment), a behavioral optometrist, or an occupational therapist may be of assistance.

TABLE 9-2 Selected Compensatory Measures Related to Specific Visual Impairments

Visual Impairment

Compensatory Measures

Decreased visual acuity

Corrective lenses (clean and in good repair) Larger print—font size 12–14 points Larger images/signs

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Magnifiers Closed-circuit television (a device to magnify objects or written material) Tactile cues for phone, oven, or microwave dials/buttons

Central vision loss

Visual scanning training and eccentric viewing

Increased sensitivity to light

Use nonreflective materials on walls, floors, and ceilings (environmental modifications) Use yellow film to reduce glare Wear protective lenses Shield eyes from bright lightbulbs Provide overhangs on windows

Decreased ability to see in dim light

Use task lighting directed at work area and/or overhead lighting to also reduce glare (environmental modification) Use nightlights Avoid driving at night, dawn, or dusk

Decreased ability to see contrasts

Use black with white or yellow contrasts Highlight obstacles or changes in floor surface levels (environmental modification) Avoid difficult color discriminations, such as blue/green when safety is a concern (otherwise, a safety pin on the waistband of a blue pair of pants can distinguish them from a similar green or black pair) Avoid moving from dark to/from light areas too quickly, give the eyes time to adjust

Data from American Occupational Therapy Association; Charness & Bosman (1990);

Zoltan (1996); Pizzimenti & Roberts (2005); Warren (2013).

Visual Perception

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Perception refers to the brain's ability to make sense of incoming sensory information. Typically, perception not only refers to being able to interpret visual data, but it can also refer to auditory, olfactory, and gustatory sensation as well. One must have the foundation of adequate visual acuity for visual perception to be intact. Unlike visual acuity, visual perceptual skills do not show a uniform decline with aging. Kim and colleagues (2014) studied the visual perceptual skills of an aging population and found that poor visual perception skills were related to aging, but were more likely a correlate or symptom of cognitive decline. However, in reverse, impaired memory may also impact visual perceptual skills (James & Kooy, 2011). In a study by Lindfield, Wingfield, and Bowles (1994), the older adult participants actually were able to identify fragmented pictures more accurately than their younger counterparts, perhaps because of their vast sensory experience perceiving the world. Even with decreased sensory functioning, older adults may become more proficient at inferring meanings from less sensory input, but they may have difficulty distinguishing novel items (James & Kooy, 2011; Lindfield et al., 1994). Older adults also tend to be slower at processing the information and take in less visual information per unit of time.

Decreases in perceptual skills such as agnosia (i.e., not understanding what common objects are used for), loss of spatial awareness (e.g., right/left, back/front), and impaired visual constructional abilities (e.g., completing puzzles, assembling common objects) are not usually associated with typical aging to any notable degree. When perception goes awry, the problem is usually related to a disease process such as dementia, stroke (cerebrovascular accident), or a psychiatric disorder. Intact perceptual skills generally are necessary for typical or normal everyday living. For example, imagine if a toothbrush and comb were indistinguishable. After a stroke, those with decreased visual perception (form recognition) may reach for the toothbrush to brush their hair. Rehabilitation specialists such as occupational therapists can work with individuals who have perceptual difficulties in adapting the environment (e.g., decreasing clutter) and adapting daily tasks

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(e.g., using simpler clothing) to promote functional performance.

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▶ Hearing Hearing is another sensory modality with a tendency to decline with age. Presbycusis (i.e., hearing loss) occurs in both genders, but men especially tend to lose the ability to hear higher frequencies. Older adults have more difficulty distinguishing higher pitched consonant sounds, although understanding lower pitched vowel sounds tends to remain intact. Additionally, older adults tend not to be able to recall earlier conversations when the number of words spoken per minute is high (Glyde, Hickson, Cameron, & Dillon, 2011). Persons of all ages are able to recall more verbal information if the words are spoken in the context of normal sentences rather than in random word strings. However, older adults' accuracy decreased more dramatically than did the younger participants with unrelated words (Fozard, 1990).

Older women are more likely than older men to report hearing loss and compensate by searching for nonverbal cues during conversation. They are also more likely than men to seek treatment as it relates to their ability to communicate and relate to others (FIGURE 9-2). In contrast, older men, who are actually more likely to have hearing loss than women, are more likely to deny a problem and not seek treatment as it could be perceived as a sign of weakness or denial that there are problems (Bainbridge & Wallhagen, 2014).

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FIGURE 9-2 FIGURE 9-2 More women than men are likely to seek treatment for hearing loss, including getting assessed for a hearing aid.

© Alexander Raths/Shutterstock

Mild hearing loss doubles for every decade past the age of 50 and is often worsened by repeated or on-going exposure to high-intensity sound (Bainbridge & Wallhagen, 2014). Older adults also tend to have more difficulty tuning out background noise (Glyde et al., 2011), which often leads to discomfort or frustration during noisy social gatherings and may deter them from engaging with people in their surroundings. Consequently, having a hearing impairment may lead to social isolation. In large-scale longitudinal studies, researchers found that older adults with hearing impairments reported feelings of loneliness and anxiety due to social isolation caused by hearing loss (Contrera et al., 2017; Pronk et al., 2014). Not surprisingly, individuals with hearing loss had fewer people in their social network. Also, if they were widowed, they were even more at risk for social isolation than their married counterparts, as they had fewer social connections.

Being socially isolated can lead to mental decline due to the lack of cognitive stimulation. During conversations, people with hearing loss tend to rely on their cognitive reserve (i.e., ability to improvise or compensate for loss). Hearing loss is associated with a higher risk factor for being diagnosed with dementia. However, whether the hearing loss is associated with cognitive decline as a cause or whether it is a potentially modifiable risk factor (e.g., through surgery to correct hearing loss) still has not been definitively determined (Golub et al., 2017; Lin et al., 2011).

Scientific findings coupled with professional expertise suggest the following recommendations for healthcare professionals working with older adults with hearing loss:

Speak in a tone that can be heard. Although some older individuals may need you to increase your volume or decibel level, do not assume this is needed. More likely, the person who has difficulty hearing will need you to lower the pitch of your voice. Therefore, ask each person what works best

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for him or her. Whenever possible, face people so they can see your lips when you speak. Begin conversations by saying their name to get their attention. Make and maintain normal eye contact, and keep your hands away from your face and mouth to enable lip reading. Speak in a clear and natural manner (Cleveland Clinic Foundation, 2012c). Be sure your rate of speech is not too fast, but not so slow as to sound condescending. When necessary, rephrase what you have just said rather than repeat. Avoid elderspeak, which is described as baby talk for older adults (e.g., use of more diminutives, slower speech, more repetition, and simpler words with fewer syllables; AARP, 2017). Even though older adults may have difficulty hearing, they should not be talked to as if they have lost their cognitive capacity. Whenever possible, keep background noise to a minimum. Do not jump from one idea to the next too quickly in conversation. Older adults are more likely to rely on the context of what is being said in order to understand the conversation.

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▶ Smell Other sensory perceptions that change over time include olfaction (i.e., smell) and taste. Declines in these closely related senses can have psychological implications. The ability to detect smells in general and correctly identify discrete odors decreases with age. Thus, older adults age 65 and older experience a high prevalence of hyposmia (i.e., decreased smell sensation) and anosmia (i.e., complete loss of smell) and most people older than age 80 have some level of impaired olfaction (Attems, Walker, & Jellinger, 2015). A large study by Mullol and colleagues (2012) found that nearly 20% of adults in the general population experienced impairment in smell, with women outperforming men in smell tasks across all age groups.

As people age, the sense of smell tends to decline insidiously, and therefore go unnoticed for some time. Such limited awareness of decline can constitute a serious safety issue for persons wishing to remain independent in their own homes. Hyposmia or anosmia have been consistently linked to decreased safety, poor nutrition, and decreased quality of life. Both conditions are also predictive of mortality. Moreover, olfactory impairments are also believed to be a prodromal symptom for Parkinson's and Alzheimer's diseases (Dong et al., 2017). Compensatory strategies to reduce risk to health and safety include installing natural gas/smoke detectors and having someone else with a normal sense of smell routinely check for spoilage of food. Loss of smell is also associated with depressive symptoms and lower quality of life, and can negatively impact enjoyment of food, drink, and socialization (Gopinath, Kaarin, Sue, Kifley, & Mitchell, 2011). Olfaction also informs taste sensation. A decreased sense of smell can decrease pleasure in eating, which over time can increase the potential for malnutrition.

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▶ Taste As people age, their ability to detect salty, bitter, and sour tastes decreases, and the threshold of salty flavor needed for detection increases however, the ability to taste sweets does not appear to change with age (Methven, Allen, Withers, & Gosney, 2012). These sensory changes may contribute to an overreliance on sweets and the oversalting of food.

Adequate hydration is needed for fluid and electrolyte balance and proper body function throughout life, yet thirst sensation declines as one ages (Goldberg et al., 2014). Other factors, besides advanced age that increase the risk of dehydration, include memory impairments, Parkinson's disease, Alzheimer's disease, stroke, or any other health condition that can cause dysphagia (i.e., difficulty swallowing; Goldberg et al., 2014).

A limited diet and inadequate dietary intake may actually cause losses in taste perception as the number of taste buds decreases due to malnutrition or as a side effect of medication. Appetite can also decrease due to the sense of fullness and early satiation caused by age or disease-related changes in the gastrointestinal tract (Ahmed & Haboubi, 2010). Collectively, these factors point to the extreme importance of maintaining an adequate diet, especially as we age. (For more details on nutrition see Chapter 11).

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▶ Physical Changes Not surprisingly, physical changes also take place as we age. This section introduces the reader to some of the primary changes that occur. While not always the consequence of living a long life, these changes occur more frequently in old age.

Range of Motion Range of motion (ROM) refers to the ability of a joint to move through its natural pattern of movement. For example, the shoulder of a typical healthy person can flex up (toward the sky) nearly straight (about 170°; Soucie et al., 2011). This amount of movement is considered normal for that joint. In fact, every joint in the body has a typical range of movement.

Declines in joint ROM in the shoulder, hip, and wrist are known to occur with age, up to 5–6 degrees per decade after age 55 (Stathokostas, McDonald, Little, & Paterson, 2013). However, chronological age alone is not as likely to affect ROM as much as some age-related conditions, which can restrict smooth movements and limit maximum ROM. Specifically, arthritis; joint or muscle disuse, misuse, or overuse; injuries; stroke; Parkinson's disease; and dementia are associated with less than optimal movement patterns. Arthritis is the most common cause of disability in the United States, with more than 50 million people (approximately 50% of adults over age 65) living with the functional limitations and losses associated with its various forms (CDC, 2012).

Nonresistive, repetitive ROM exercises can be useful in maintaining or improving current range of movement, or may slow down the progression of disease processes as in the case of osteoarthritis (Mayo Clinic, 2016). Physicians and other professionals who are experts in movement (e.g., physical and occupational therapists) can help older persons work toward their best possible performance by developing personal movement programs suited to their needs (FIGURE 9-3). These prescribed exercise programs can potentially stave off loss of

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motion secondary to simple disuse or disease, maintain current range, or even increase ROM and increase strength. Regardless of a client's life situation, regular movement (especially through engagement in meaningful life tasks) can contribute to better health if the individual is able.

FIGURE 9-3 Physical and occupational therapists help clients improve mobility and strength.

© Gagliardi Images/Shutterstock

People who tend to be sedentary or immobile, including individuals who are bedridden for a prolonged period in the hospital or in long-term care facilities, are especially at high risk of sustaining joint contractures (i.e., stiffening of muscles and tissues leading to rigidity of joints). Contractures are generally caused by joint immobilization and result in decreased ROM, stiffening and subsequent structural changes, and pain upon movement at one or more joints. The joints typically affected are the hips, shoulders, fingers, and knees. The best treatment approach is to prevent contractures from occurring through regular movement and exercise/stretching. However, if remedial treatment is needed, the focus of intervention is to increase joint mobility through the use of a passive, active-assisted, or an active ROM program established by a rehabilitation specialist. If contractures are not resolved, surgical intervention may be required to reduce pain or immobility that is interrupting daily functioning (e.g., bathing, dressing, and eating).

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Strength Maximum muscle strength tends to occur in early adulthood; middle age is generally a time of only slight decline. After age 50, there is a reduction in strength, with losses tending to occur at a 15% loss in strength every 10 years (Keller & Engelhardt, 2013). However, not all individuals get progressively weaker with age. Physically capable older adults can still participate in and excel in sports requiring practice and skill such as tennis, golf, skiing, boating, and bowling (FIGURE 9-4). Research findings have indicated that older adults who exercise can reduce pain caused by arthritis, restore their balance and reduce the potential for falls, strengthen their bones, maintain their ideal weight, improve glucose control for diabetes management, and improve their heart health (CDC, 2011). By adding a prescribed exercise routine into daily life, people can improve their muscle strength. Encouraging physical activity is almost always appropriate, although the level of exertion and duration of activity needs to be determined by the person's primary healthcare provider(s), and goals related to physical fitness should be established collaboratively with the individual.

FIGURE 9-4 Practicing tai chi is a way to improve balance, strength, and agility.

© Alexander Mazurkevich/Shutterstock

Endurance

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Endurance is defined as the ability to sustain involvement in a physical activity. Lack of this physical reserve and ability to resist stressors can lead to frailty (Cadore, Pinto, Bottaro, & Izquierdo, 2014). Although not the same as strength, the two are closely intertwined. As muscle power decreases, frailty level increases (Cadore et al., 2014). The combination of endurance and strength training has been found to have a positive impact on heart and pulmonary function, improve muscle function, increase functional capacity, and improve cognition (Muscari et al., 2010; National Institutes of Health, 2012).

Physical Exercise A meta-analysis of 13 aerobic exercise training programs for older adults demonstrated that long-term programs (more than 30 weeks in duration) were associated with improved physical endurance (Huang, Shi, Davis-Brezette, & Osness, 2005). An active lifestyle involving stretching, aerobic activity, and strength building can improve ROM, strength, and endurance. Participation in such a program may actually slow the course of physiologic aging (FIGURE 9-5).

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FIGURE 9-5 An active lifestyle involving activities that are mentally and physically stimulating, may actually slow the course of physiologic

aging. (top left) © asliuzunogu/Shutterstock; (top right) © Ariel Skelley/Digital Visions/Getty

Images; (bottom) © Pierdelune/Shutterstock

In a recent review of both physical and mental training, Curlik and Shors (2013) found that physical exercise in rodents helped to build new brain cells, and therefore was also important for maintaining brain health. Even though aerobic activity fosters the production of new neurons in the hippocampus, it is brain activity associated with learning new skills (e.g., cognitive exercise) that helps the newly formed neurons survive over time (at least in the rodent models).

Praxis

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Praxis is defined as the ability to carry out purposeful motor actions. Dyspraxia refers to a decreased ability to plan and/or execute purposeful movements, whereas apraxia is the complete inability to carry out these motor plans.

During most common routines, individuals do not need to think consciously about their performance. Simple tasks such as eating or dressing are completed automatically every day. Frequent repetition of routine goal-directed activities throughout the day (e.g., self-care, work, leisure, and housekeeping tasks) enables the conversion of once novel actions into established habits and routines. Functional performance is not lost rapidly or suddenly one day because of the aging process. However, if the level of motor (or cognitive) performance significantly decreases for any reason (e.g., injury, aging, or disease), the ability to live independently may be threatened. Often, when there is a decline in function, an overarching rehabilitation goal is to help people regain lost skills and learn to work with their remaining abilities.

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▶ Physical Performance When reviewing studies that have explored the physical performance of older adults, we find cross-sectional differences between age groups (i.e., 20-year-olds versus 80-year-olds), as well within individuals over time (e.g., from age 60 to age 80). Genetics, lifestyle, and the presence of illness or disease can impact the onset and severity of change in physical performance. Age-related performance can be measured in several domains: reaction time, gross motor coordination (including balance and mobility), strength, endurance, and work-related performance.

Reaction Time Perhaps, the most straightforward trend when examining performance is the slowing of reaction time as people reach old age. One example of a situation when a quick reaction time is needed is while driving a car and suddenly needing to yield or brake in traffic. As people age, they are not able to react as quickly as they were in their younger years. A recent study by Sventina (2016) found that reaction time and timed performance do slow significantly with age. However, there is variability among older drivers. Yet, other aging factors also need to be considered to determine an older person's fitness to drive: physical strength, mobility, cognition, and visual perception. Collectively these age-related changes challenge driver safety and performance and should be recognized and routinely examined.

Motor Coordination Intact gross motor coordination (i.e., mobility or ambulation) is another crucial prerequisite to completing daily tasks without assistance. Falls affect older adults more than any other age group. An estimated one in three adults age 65 and older has at least one fall yearly. Of these 2.3 million falls, more than 800,000 resulted in hospitalization as a result of head injuries

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and hip fractures (CDC, 2017). Between 20% and 30% of people who fall sustain injuries such as lacerations, hip fractures, or head traumas. Injuries form falls can make it hard to ambulate or live independently, and increase the risk of early death (CDC, 2017). In 2014, over 55,000 older adults died as a result of an unintentional fall (CDC, 2017).

Unfortunately, falling once increases the risk of falling again (Ganz, Bao, Shekelle, & Rubenstein, 2007). Repeated falls are often associated with declines in balance, coordination, and/or strength, all of which have been well researched and determined to be correlated with increased age. However, it is important to emphasize that there is variability in old age and the vast majority of older adults still have adequate levels of strength and coordination to complete their daily tasks and the activities they want to do.

Impaired ambulation may be cause for a referral to a physical therapist, who may be able to help remediate physical skills or possibly recommend assistive devices for safe ambulation. Local Area Agencies on Aging may be able to recommend local programs designed for older adults who want to improve their sense of balance (e.g., the “A Matter of Balance” program started by rehabilitation specialists at Boston University; Maine Health, 2017). There are several ways to improve postural control (i.e., exercises, sports, yoga, or tai chi) to limit the number of potential falls, by challenging balance and improving strength and agility (Gillespie et al., 2006). In conjunction with exercise, it is vital to make sure the home or living environment is clutter free and that obstacles (i.e., loose rugs, cords, and pets) are reduced so as not to present hazards. Rehabilitation specialists such as physical and occupational therapists are good resources for developing person-centered balance-related treatment strategies.

Fine motor coordination refers to hand-based skills such as writing, self-feeding, buttoning, and working with tools. When fine motor skills are impaired, as they often are in old age, the culprit is more than likely arthritis, stroke, or another skill- robbing disease rather than typical aging. When considering age alone, there is little change in the ability to complete fine motor tasks. Older adults who age typically without limitations

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brought on by disease are just as capable as their younger counterparts in completing fine motor tasks such as typing, cooking, knitting, and card playing. This maintenance of motor skills has two potential explanations: (1) consistent practice over the years has maintained and/or improved skill level over time, and (2) with ongoing repetition these tasks become more automatic and therefore require less skill for completion.

Any significant decreases in level of functioning, occurring either suddenly or over the course of a few weeks or months, are not generally consistent with the typical aging process and should be addressed. Abrupt behavioral changes should also send up warning flags to the older person and their families and social networks warranting a call, and probably a visit, to the person's primary care provider. The physician can then make referrals for further medical care or for rehabilitation.

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▶ Work Performance In considering age-related losses in functioning with regard to cognition, balance, reaction time, and muscle strength, one might surmise that general work performance of older workers would be inferior to that of their younger counterparts. However, this does not seem to be the case. Having health issues and being older does not significantly interfere with the quality of work. Older adults are considered more dependable (Prenda & Stahl, 2001; Reade, 2015), are less likely to be absent from work, and have fewer proportionately workplace injuries than younger workers (Ng & Feldman, 2008). They also demonstrate less workplace aggression and substance misuse than their younger counterparts (Prenda & Stahl, 2001; Reade, 2015). Employers praised older workers' stronger work ethic while others laud the older employees' experience and sense of leadership and wisdom (Figure 9-6; Reade, 2015).

FIGURE 9-6 Some employers commend older adults on their work ethic, dependability, and leadership skills.

© Rocketclips, Inc./Shutterstock

Although there do seem to be age-related declines in cognition, sensation, perception, and physical performance, for most typically aging older adults these changes do not make a substantial impact on either their comprehensive work performance or essential daily living skills. Being productive, as mentioned in Chapter 2, in a work environment can help keep

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older adults active and connected with their communities as well as foster a sense of well-being and self-esteem. As the aging population within the workplace grows, employers will be faced (if they are not already) with accommodating the needs of older workers. Most older adults can do very well in the workplace with minimal modifications for their health and safety (e.g., changes in workstation setup, improved lighting). These accommodations can also benefit younger workers (Kenny, Yardley, Martineau, & Jay, 2008).

According to a Sloan Center on Aging & Work report (2009), only about a third of employers had strategies to encourage workers to keep working past the traditional retirement age, even though nearly half of employers surveyed (46%) stated that retaining talented workers was essential to the future of their organizations.

The role of medical professionals in keeping older workers (and workers with disabilities) in the workforce was explored in a roundtable workshop supported by the U.S. Department of Labor (Heidkamp & Christian, 2013). The topic of supporting older workers is pertinent because older workers age 55 and older will make up approximately 25% of the workforce in 2020. Moreover, the increase of workers age 65 and older is projected at 75%. Still, many older workers chose to retire instead of continuing to work after sustaining a disability, even though work overall is currently less physically demanding than it was in the past. Older workers are also more likely to stay unemployed (than prime-age workers) once they lose their jobs.

At the roundtable, participants discussed two cases of older workers who sustained the same medical condition (“bad” spinal cord disc, corrected by surgery) and both had “mediocre” work histories. In Case 1, the “weak” supervisor never followed up with the worker, work place teasing was expected, and the person's physician encouraged the person to stay home until he felt better; the result was the worker was placed on permanent disability. In Case 2, the “supportive” supervisor called to let the worker know that he was needed, the coworkers were supportive of the worker's return to work, the employer made workplace adaptations (i.e., adaptive equipment and transitional work); the result was that this worker returned to work after 6 weeks

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(Heidkamp & Christian, 2013, p. 7). Given that talented older workers are needed and that work (e.g., productive activity) can be good for one's physical and mental health, the conclusion of the roundtable discussion was that healthcare professionals need to help older workers remain on the job, even after incurring disabilities. They can support older workers efforts to return to work and remain employed by supporting accommodations and accepting partial absences instead of advocating for their permanent withdrawal from the workplace.

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▶ Sleep Sleep is an essential part of everyday life. This daily task is completely different from other activities, but we cannot live without doing it regularly. Sleep plays a central role in promoting good health and a high quality of life. Changes in sleep patterns, including lack of sleep quality, can occur with age due to difficulty falling and staying asleep (Yaffe, Falvey, & Hoang, 2014). Disturbance in sleep patterns caused by declines in memory and cognition are common for people with Alzheimer's disease and other dementias (Yaffe et al., 2014).

Lack of sleep contributes to how one feels and acts during the day. The National Sleep Foundation (2008) reported that nearly 20% of Americans representing all ages and socioeconomic statuses report sleep-related problems. Yet, older adults share more of this burden than other age groups. In a more recent study, the Foundation (2017) found that 39% of 65+ people reported sleep problems, such as waking up during the night. Still, 60% of older adults surveyed reported that they get refreshing sleep (National Sleep Foundation, 2017).

Normal Sleep To discuss sleep disorders, it is important to have a basic understanding of sleep and the typical sleep cycle. People have a sleep–wake cycle that is known as the circadian rhythm—the 24-hour clock responsible for keeping most people awake during the day and allowing them to feel sleepy and go to sleep at night. The stimulating effects of light, through the retinohypothalamic tract, control this rhythm in the hypothalamus. The light causes alerting signals to help maintain wakefulness. As the day progresses, the sleep load increases and the alerting signals must get stronger for continued feelings of alertness. When darkness falls, evening/nighttime routines such as dinner and relaxation are associated with the decrease of alerting signals. Melatonin is released, causing further reduction in the alerting signals until the sleep load overtakes wakefulness

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and sleep ensues. For many individuals, this happens between 9 and 11 at night.

Once asleep, there is a rhythm to our sleep. Sleep is broken into two states: non-rapid eye movement (NREM) and rapid eye movement (REM) sleep. Non-REM sleep consists of three stages: N1, N2, and N3 (and for younger people a fourth stage N4). N1 is the link between consciousness and unconsciousness. In this stage of sleep, we may have some awareness of surroundings and can easily be aroused. We spend about 5% of our time asleep in stage N1. In stage N2, we lose consciousness, but we are still in a light stage of sleep and still can be aroused fairly easily. Approximately 50% of our sleep time is spent in stage N2. Stage N3 is considered deep sleep. When we are in deep sleep, arousal is difficult. If aroused during deep sleep, we are usually somewhat disoriented. During this stage, growth hormone is released, which continues to be needed for tissue repair as we age. The N3 stage of sleep is when we experience the most restorative sleep that is essential to functional performance and feeling refreshed during the day. As we age, the N3 stage of deep sleep decreases and is replaced by the lighter stage N2 (FIGURE 9-7).

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FIGURE 9-7 REM cycles of younger and older adults. From the New England Journal of Medicine, Anthony Kales, M. D. and Joyce D. Kales, M.

D., Sleep Disorders: Recent Findings in the Diagnosis and Treatment of Disturbed Sleep,

290, Page Nos. 487–499, Copyright © 1974 Massachusetts Medical Society. Reprinted with

permission from Massachusetts Medical Society.

Stage R or REM sleep is when we dream. During this stage of sleep, the brain is more active than when we are awake. REM sleep is thought to be responsible for reorganization of our thoughts, similar to rebooting a computer. During stage R, we experience muscle atonia (i.e., extremely relaxed muscles), preventing us from acting out our dreams. We also lose a degree of autonomic control, which leads to heart rate variability,

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irregular respiration, and fluctuations in blood pressure. When all is well, stage R comprises about 25% of our sleep.

The sleep cycle consists of four to five periods of non- REM and REM sleep, each lasting about 90 minutes. The first part of the night consists of more deep sleep (N3) and shorter REM sleep, and the latter part of the night consists of longer REM periods and shorter deep sleep (N3) periods (FIGURE 9- 7).

Impact of Sleep on Older Adults Sleep requirements change over the lifespan. Infants need approximately 16 hours of sleep per day and adults need about 8 hours per day. One long-standing misconception is that older adults need less sleep. They actually need the same amount of sleep as they get older, but getting enough of the refreshing type of sleep may become more difficult as less time is spent in deep sleep and more time is spent in lighter sleep stages. During lighter stages of sleep, individuals are more easily aroused and thus may be more susceptible to sleep disruptions caused by pain or discomfort associated with illness and disease. Older adults take more medications than any other age group and many of these medications can interfere with sleep (e.g., sedatives and benzodiazepines). Other health-related issues experienced in the second half of life, including depression, menopause, frequent need to urinate, heart disease, and stress, can also lead to insomnia (i.e., inability to sleep; Smagula, Stone, Fabio, & Cauley, 2016). Although sleep requirements stay the same throughout adulthood, sleep efficiency (i.e., time asleep compared to time in bed) is reduced over time, requiring older adults to spend more time in bed just to get the required amount of sleep (Phillips, 2005).

Individuals' circadian rhythms also change as they age. The rhythm becomes phase advanced, which results in melatonin being released earlier in the evening. This may lead to moving bedtime up and early morning awakenings. Instead of getting sleepy between 9 and 11 p.m., sleepiness may occur as early as 7 p.m. This change leads to earlier wake-up times (usually between 4 and 5 a.m.). Although this change is considered normal, it can have a negative impact on one's work and social

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life. The easiest way to delay the hour of sleep is exposure to bright light (either natural sunlight or artificial light) later in the day. Artificial light of at least 2,500 lux (five times brighter than house lights) is recommended (Phillips, 2005).

Sleep Disorders Common sleep problems or disorders (especially in older adults) include:

Sleep-onset insomnia (i.e., difficulty falling asleep) Waking up often during the night (i.e., sleep maintenance insomnia) Waking up too early and not being able to get back to sleep (i.e., terminal insomnia) Waking up not feeling refreshed Snoring, which may be related to sleep apnea (i.e., temporary cessation in breathing) Unpleasant feelings in the legs (e.g., restless leg syndrome [RLS])

Insomnia

Insomnia is the most common symptom of more than 30 different sleep disorders, and approximately 30% of adults complain of insomnia (Phillips, 2005). Acute insomnia lasts fewer than 30 days, whereas chronic insomnia lasts longer than a month. The onset of insomnia may begin with an emotional event such as the loss of a loved one or a recent stay in the hospital. During the event, the normal rhythm of sleep is disrupted and an abnormal sleep cycle ensues. Once the new cycle becomes the norm, many people have difficulty resuming their previous sleep routine.

Although many people believe the most effective treatment for insomnia is in the form of a sleeping pill, that approach is not in the best interest of every person. Sleeping pills may be a good short-term solution, especially for people who have had a traumatic or emotional event that is interfering with sleep (e.g., death of a spouse or a forced move). However, in the long run, other techniques such as sleep restriction, stimulus control, sleep hygiene, and cognitive behavioral therapy can offer more sustainable and positive impacts on a person's overall

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quality of life (Phillips, 2005). Additionally, underlying health issues such as stress, illness, medication side effects, environmental interruptions (light or noise), depression, and/or pain should be fully addressed prior to considering sleep medications (Cleveland Clinic Foundation, 2012a). Obstructive Sleep Apnea

Signs and symptoms of obstructive sleep apnea (OSA) include snoring and witnessed apnea (i.e., temporary cessation of breathing) during sleep and/or complaints of excessive sleepiness during the day. OSA occurs when the trachea is either totally or partially obstructed, causing the body's oxygen level to drop. This event signals the brain to wake up, which increases muscle tone and subsequently raises the oxygen level back to normal. The disruption of the sleep pattern can occur up to 60 times in an hour, so a person with OSA may need 10–12 hours of sleep each night just to get enough restorative sleep (National Sleep Foundation, 2013). Before age 50, twice as many men as women are afflicted with OSA, but after women reach menopause, differences in the prevalence of OSA diminishes between the sexes. Health conditions often attributed to the presence of OSA include high blood pressure, heart disease, stroke, diabetes, and poor brain oxygenation (National Heart, Lung, and Blood Institute, 2012). Loss of oxygen to the brain due to OSA or any other health condition can be life threatening and have serious consequences, including heart arrhythmias and mood and memory problems (National Sleep Foundation, 2013).

Maintaining a side-lying sleep pose may help reduce OSA as lying on one's back seems to exacerbate the problem. Also, the continuous positive airway pressure (CPAP) device is considered the leading therapy for OSA and has helped millions of users overcome the negative impact of sleep apnea (FIGURE 9-8). A CPAP machine is often prescribed after a sleep study has been completed by a sleep specialist. During a study, aspects of sleep examined include sleep state, eye movement, muscle activity, heart rate, respiratory effort, airflow, and blood oxygen levels (National Sleep Foundation, 2013). Even though a temporary lack of oxygen underlies OSA, the CPAP device does

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not involve oxygen transmission. Rather, it works to keep the airway path unobstructed through air pressure (Berry & Sanders, 2005). CPAP hoses and masks require regular maintenance and cleaning. If not maintained, the buildup of bacteria can cause additional harm just by using the machine.

FIGURE 9-8 A woman wearing a CPAP device. © sbw/Shutterstock

Restless Leg Syndrome/Periodic Leg Movements During Sleep

Restless leg syndrome (RLS) is a neurologic disorder that causes “creepy crawly feelings” or other unpleasant sensations in the legs and an irresistible urge to move the legs while in bed or at rest (National Institute of Neurological Disorders and Stroke [NINDS], 2017). These symptoms lead to periodic leg movements during sleep (PLMS), which hinder people from getting a good night's sleep. According to the NINDS (2017), PLMS may occur every 10–60 seconds and may last the entire night. The constant need to move causes the brain to wake up, disrupting the sleep cycle (akin to sleep apnea). Parkinsonian- type medications (Levodopa), along with anticonvulsants, benzodiazepines, and narcotics, have been able to afford some relief to PLMS sufferers (Cleveland Clinic Foundation, 2012; NINDS, 2017). Individuals with PLMS are also advised to avoid stimulants such as alcohol, caffeine, chocolate, nicotine, tea, and soft drinks to lessen their symptoms (Cleveland Clinic Foundation, 2012b). Although there is no known cure, tips for

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managing RLS symptoms include exercise, leg messages, use of warm packs, and leg compression devices (NINDS, 2017).

Treatment of Sleep Disorders Treating sleep disorders can be challenging. A systematic review and meta-analysis of treatments sought by 1,162 adults with sleep problems revealed that effective strategies included sleep restriction, stimulus control, sleep hygiene, cognitive behavioral therapy (CBT), and relaxation techniques (Trauer, Qian, Doyle, Rajaratnam, & Cunnington, 2015). Although the typical healthcare professional is not expected to help an older person overcome serious sleep disorders, understanding treatment approaches and being familiar with simple strategies can be useful in supporting an older adult's quest for regular restful nights of sleep.

Sleep restriction does not refer to actually restricting sleep, but rather to restricting one's time in bed. The goal is to be asleep 90% of the time that one spends in bed. Often, individuals who have insomnia will spend many hours in bed, but not sleeping. This leads to poor sleep habits whereby one learns (subconsciously) that a bed is not for sleeping. If people aim for the 90% rule, they can determine how long they would need to be in bed to get the desired number of hours of sleep. The first step is to rise out of bed at a designated time, whether or not enough sleep has been had. Then the goal is to stay awake (and out of bed) until it is time to go to sleep again. At a later date, additional time spent in bed can be gradually added back in.

Stimulus control also refers to the amount of time spent in bed, attempting to get to sleep or back to sleep. If a person cannot fall asleep within a half hour, it might be best to get out of bed and engage in a relaxing activity. When the person becomes sleepy, she or he should go back to bed and try to sleep. Rather than tossing and turning, consumed with worry that one will not get enough sleep, one gets out of the bedroom and does an activity. This activity should be soothing and tailored to personal interests such as reading, completing puzzles, or engaging in a craft.

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Sleep hygiene involves those activities and habits that are conducive to sleeping soundly and are largely individualized. Most people find that a quiet, cool, dark room is helpful for inducing sleep, whereas eating, exercising, or listening to a blaring television are more likely to prevent sleep. When trying to promote sleep, exercise should take place at least 2–3 hours before bedtime and taking a hot bath can be helpful an hour or more before heading to bed. Some people find it helpful to write a to-do list for the next day to put the next day's demands into perspective before bedtime. It can be helpful for people experiencing sleep disturbances to spend time devising their own personal sleep hygiene “dos and don'ts” list so that they can work on promoting healthy, restful sleep patterns for themselves.

Last, CBT, an evidenced-based therapeutic approach used to change personal behaviors and thinking, has been found to be helpful for people having difficulty sleeping. A therapist who specializes in sleep disorders can teach a client about sleep and work with them to understand that it is not necessarily catastrophic if one does not get enough sleep, on occasion. Worrying about the lack of sleep only exacerbates the situation. A licensed therapist uses CBT to help an individual put sleep activities into perspective and reduce worries about personal sleep patterns (Edinger, Wohlgemuth, Radke, Marsh, & Quillian, 2001; Morin, 2015).

One of the techniques mentioned may be all that is needed for a person to regain sound sleeping habits, or several strategies may be required. Fortunately, sleep disorders are usually treatable. Supporting older adults who report sleep problems is important because people with few sleep disturbances are more likely to age successfully (American Academy of Sleep Medicine, 2008).

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▶ Summary This chapter reviews some of the sensory and physical changes that accompany the aging process, especially with regard to day- to-day functioning. In reality, the vast majority of older adults manage their daily routines just fine. Persons who are affected by age-related health problems or who are living with the consequences of earlier poor lifestyle choices, are not likely to manage as well as their healthy counterparts. However, people with chronic health conditions or physical decline secondary to ill health can be surprisingly resilient and outperform the expectations placed upon them. As healthcare professionals, it is our responsibility to support them in making positive changes and to instill hope for their futures.

Highlights of the changes addressed in this chapter are as follows:

Common visual diagnoses include decreased acuity, cataracts, macular degeneration, glaucoma, and diabetic retinopathy; yet, the majority of older adults are able to maintain adequate visual skills (with correction) for the successful completion of daily tasks. Visual perceptual skills or the ability to interpret incoming visual information is more affected by disease processes (such as stroke) than by the aging process alone. Physical skills such as joint ROM, strength, endurance, reaction time, and motor coordination do change over the course of time, with older adults generally not performing as well as their younger counterparts. However, several measures can be taken to improve performance even among the oldest members of the population. Perhaps surprisingly, for various reasons, older workers tend to perform as well as or better than their younger counterparts. Retaining older workers is important for sustaining many organizations, yet relatively few organizations have strategies that encourage older workers to stay on the job.

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Sleep disorders are common among older adults, and several treatment techniques for improving quality and quantity of sleep are available for individuals needing help in this realm.

CASE STUDIES

Case 1: Morton is an 88-year-old widowed male who lives with his daughter and her family in Virginia Beach, Virginia. Prior to retirement 18 years ago, Morton was an auto parts store manager and also worked as the town clerk. He describes himself as being social and enjoys reading and assembling model antique cars. He has managed to stay active, swimming daily and playing golf on the weekends with his former coworkers. He enjoys getting together with his golf buddies, even though they sometimes tease him about losing his hearing. But he denies that he has a problem, even though he often has to piece together what his friends are talking about based on the words and phrases he can make out. The only thing he does not like about these weekend meet-ups is lunch at the country club. Morton enjoyed the food there for decades, but in recent years none of his favorite dishes there taste like they used to. He has the same problem with the food his daughter prepares. “Jeez,” he jokes with his friends, “Nobody knows how to cook anymore!” Morton enjoys staying active despite his advanced age.

1. What are some ways in which regular exercise are benefitting him?

2. What can Morton's friends do during their weekly golf outings to help accommodate for his hearing loss?

3. Explain why Morton is likely complaining about the taste of food, including some possible root causes for this perception.

Case 2: As a child, Susan was an excellent sleeper. She could fall asleep quickly, and typically slept straight through the night, often for as long as 10 hours. As a teenager, then as an adult, she did not sleep as long as she used to (usually about 8 hours), but still had no trouble falling or staying asleep at night. Today, Susan is 67 years old, and although she is relatively healthy, she just does not sleep

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the way she used to. Over the last few years, it has taken her longer and longer to fall asleep at night, to the point where she is often still awake after midnight. Regardless of how much sleep she ultimately gets, she still feels groggy throughout the day. A friend suggested that she might have sleep apnea and recommended that Susan talk to her doctor about having a sleep study done and possibly getting a CPAP machine. The way she is feeling, Susan is ready to try just about anything.

1. What are some strategies Susan can try to combat her insomnia?

2. If Susan has a sleep study, what aspects of sleep will be evaluated?

3. If Susan does have sleep apnea, what is happening to her when she sleeps and how might a CPAP machine help her?

Test Your Knowledge

Review Questions

1. Velma has fallen in her home several times in the last few months. Luckily, she has not been seriously injured, but her daughter, Betty, is concerned that her mother might fall again and possibly break her hip. What can Betty do to help reduce the likelihood that Velma will fall again?

a. Work with her to develop her fine motor skills b. Discourage her from engaging in any physical

activity c. Remove any loose rugs from the house d. Have her tested for restless leg syndrome

2. A common sign of obstructive sleep apnea is: a. Snoring b. Dry mouth in the morning c. Sleeping on your back

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d. Numbness in the arm

3. Erin was recently diagnosed with restless leg syndrome, and her physician prescribed an anticonvulsant. In addition to taking her medication as prescribed, what else can Erin do to lessen the symptoms of her condition?

a. Apply cold packs to her legs before bedtime b. Use a leg compression device c. Drink some brandy before bedtime d. Avoid exercising her legs

4. Which visual skill tends to be preserved with age? a. Ability to see well in dim light b. Contrast sensitivity c. Ability to maintain fixation on a target d. Visual processing speed

5. An active lifestyle involving stretching, aerobic activity, and strength building can:

a. Improve hyposmia b. Reverse hearing loss c. Reduce the size of cataracts d. Improve range of motion

Learning Activities

1. (Complete the first part of this learning activity before reading the chapter.) On the left side of a piece of paper, make a list of the following: vision, visual perception, hearing, smell, taste, ROM, strength, endurance, work performance, and sleep. For each category, write down what you expect to happen with this factor as you get older. Then, read the chapter and compare what you expected with what you learned in the chapter. Were you surprised about any of the results?

2. Based on what you learned in the chapter, why are social gatherings more difficult with advancing age?

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What other life tasks may be more difficult for older adults and why?

3. Two, three, or four people should choose a card game they all know how to play. One player will wear glasses smeared with petroleum jelly; another player should wear earplugs and heavy leather gloves; the third player must keep his or her hands in a fist and wear dark sunglasses. If there is a fourth player, he or she will cover one eye and can move her arms only by sliding them across the table due to arm weakness (although she can still move her fingers). Any time a player cheats, he or she will lose a point toward the total score. After the game, discuss how the simulated age-related changes affected your ability to play the game.

4. Review the activity in item 3. How could you make it easier for the players to enjoy their game of cards? Come up with several suggestions.

5. Make a personal list of sleep hygiene “dos and don'ts” for yourself. Discuss with the group.

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© patpitchaya/Shutterstock.

CHAPTER 10 Drugs and the Older Adult David J. Mokler, PhD

CHAPTER OUTLINE

INTRODUCTION

PHARMACOKINETICS Drug Absorption

Oral Administration Transdermal Administration

Drug Distribution Drug Metabolism Drug Excretion

PHARMACODYNAMICS

PHARMACOGENOMICS

ANTICHOLINERGIC SYNDROME Other Syndromes

DRUG DEPENDENCE, MISUSE, AND ADDICTION

BEERS LIST AND STOPP/START

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HERBAL MEDICINES AND SUPPLEMENTS

POLYPHARMACY

SUMMARY

BEHAVIORAL OBJECTIVES

Upon completion of this chapter, the reader will be able to:

1. Discuss the physiologic changes that occur as we age that affect our response to drug administration, including absorption, distribution, metabolism, and excretion.

2. Describe the symptoms of anticholinergic syndrome and identify classes of drugs with anticholinergic side effects.

3. Describe the symptoms of serotonin syndrome and identify classes of drugs that have serotonergic activity.

4. Identify classes of drugs that should be avoided in the older patient as outlined in Beer's criteria and STOPP.

5. Identify classes of drugs which are underutilized in the older patient, as described in START.

6. Discuss drug misuse/abuse in older adults. 7. Discuss the use of herbal therapy and supplements. 8. Describe the increase in drug side effects that occur as

the result of taking an increased number of drugs. 9. Discuss how to manage polypharmacy.

10. Discuss the principle of Go Low–Go Slow in the use of drugs in older patients.

KEY TERMS

Dependence Food and Drug Administration

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Hydrophilicity Inducibility Lipophilicity Pharmacodynamic Pharmacogenomics Pharmacokinetic Physicochemical properties Polypharmacy Tolerance

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▶ Introduction Drug therapy continues to be the primary form of medical therapy for all age groups, especially within the older population. In this chapter, the term “drug” is used interchangeably with the term “medication,” both of which are used to treat diseases. Although the focus will be on drug therapy, other medications such as herbals and supplements will be discussed as they are also used extensively to prevent disease.

Over the past 50 years, the use of pharmaceutical agents has exploded. Advances in medicine and technology have extended life expectancy, and with that, the numbers of drugs used by the average older patient has increased dramatically (FIGURE 10-1). According to the American Geriatrics Society, presently people aged 65 and older make up 13% of the U.S. population and buy 33% of the prescription drugs. By 2040, the figures are expected to increase; 25% of the older U.S. population will purchase approximately half of all prescription drugs (Medina-Walpole & Pacala, 2016). In a study looking at prescription, over-the-counter (OTC) and supplement use, Qato and colleagues (2016) found that 95% of the 70-year-old Americans studied reported to be using at least one medication and 68% are taking more than five. Clearly, older Americans are heavy consumers of medications. A list of the most common medications and the percentage of older adults who use them is shown in TABLE 10-1.

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FIGURE 10-1 As advances in medicine and technology have emerged, the number of drugs used by older adults have increased. In the United

States most older adults age 70+ take at least one medication. © Jaren Jal Wicklund/Shutterstock

TABLE 10-1 Most Common Drugs Prescribed to Older Adults by Prevalence

Drug or Drug Class Prevalence (percent)

Antihyperlipidemics (statins) 50.1

Simvistatin 22.5

Antihypertensives 65.1

ACE inhibitors 30.4

Diuretics 29.5

Anticoagulants (aspirin, warfarin, and related drugs)

40.2

Aspirin 47.6

Analgesics (includes aspirin) 54.3

NSAIDs (ibuprofen, naproxen, and related drugs)

13.7

Opiate analgesics (morphine, oxycodone, and related drugs)

6.7

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Data from Qato, Wilder, Schumm, Gillet, & Alexander (2016).

The Food and Drug Administration (FDA) is responsible for the approval of prescription and nonprescription drugs. The FDA requires pharmaceutical companies to show that drugs are safe and effective by requiring them to use approved clinical trial protocols. The gold standard in clinical trials is a large double-blinded placebo controlled trial. In such trials, neither the researcher team nor the participants know who is taking the drug being tested and who is taking the placebo. This type of trial is difficult to accomplish well, which often leads to confusion about the value of pharmacotherapy due to nondefinitive results. As a result, views on the therapeutic values of different medications can continually change.

Examining the multiple stages of the FDA-required drug approval process is beyond the scope of this chapter. Of relevance to the present topic is that the FDA does not require drugs to be tested specifically in older populations. Therefore, we do not necessarily have information regarding how drugs affect aging physiology. Moreover, the FDA does not regulate the production of herbal medications and supplements; thus, the effects of both on older users are also unclear. Later in this chapter, there is a discussion of how healthcare practitioners can be informed of drugs which are relatively safe in the older patient and, importantly, drugs which are unsafe.

Many of the drug interactions that occur are due to both pharmacokinetic and pharmacodynamic interactions. Pharmacokinetics can be described as what the body does to a drug, while pharmacodynamics can be described by what the drug does to the body. The four key phases of pharmacokinetics that are addressed in this chapter are drug absorption, distribution, metabolism, and excretion. Each area may overlap but all are affected by aging and administration with other drugs.

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▶ Pharmacokinetics Drug Absorption How human physiology changes as we age is an important aspect in determining how the body handles drugs (i.e., pharmacokinetics). Drug absorption is dependent upon how a drug is administered. There are many different routes of administration: oral, sublingual (under the tongue), intranasal, intravenous, intramuscular, topical, subcutaneous, and inhaled. Each administration route could potentially be impacted by the aging process. Clinical studies tend to focus on the most common route of administration for a particular agent with oral administration being the most common route. Another common route of administration, which is affected by aging, is transdermal administration. Oral Administration

Most drug absorption after oral administration occurs in the small intestine. Thus, the rate of gastric emptying needs to be considered. In the older patient, gut motility in general and gastric emptying in particular takes a longer amount of time (Cusack, 2004). However, research studies have resulted in mixed results as to the clinical relevance of these findings.

Generally, the slowed gastric emptying is reflected clinically in a time delay in attaining maximal drug concentrations in the blood without a change in maximal drug concentration. Studies on the absorption of drugs from the small intestine showed some changes in this parameter, but the changes uncovered were inconsistent and did not lend themselves to broad generalization. Thus, oral administration of drugs, in general, does not significantly affect the clinical response to drugs (Cusack, 2004; McLean & Le Couteur, 2004). Transdermal Administration

Transdermal administration or medication administered through the skin, often through the use of a patch, is a convenient way to

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administer a steady amount of drug over a prolonged period (Figure 10-2). Examples of drugs administered though transdermal administration include estrogen (female hormone), fentanyl (an opioid painkiller), and scopolamine (treats motion sickness). Yet, as people age, they experience changes in the skin that can lead to changes in how drugs are absorbed through the skin. The outer layer or epidermis thins with age and becomes dryer, allowing for a decreased absorption of drug through the skin. Thus, use of transdermal medications in older adults may lead to lower concentrations in the blood.

FIGURE 10-2 Transdermal patches administer drugs (e.g., fentanyl and nicotine) over a prolonged period through the skin.

© Image Point Fr/Shutterstock

Drug Distribution The next phase of pharmacokinetics is distribution. Drugs distribute throughout the body based on their physicochemical properties, that is, the relationship between the chemical structure of the drug and its interactions with the body. The most important of these properties is the hydrophilicity or lipophilicity of the drug–is it more attracted to water or to fat, respectively? As people age, lean body mass decreases, which leads to increased fat content in the body. With fat content increased, a fat-soluble drug will show a larger volume of distribution, which will lower its concentration and lower its therapeutic efficacy. The effect of aging on distribution is very

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much dependent upon the specific drug, so there is no consensus on the general effect of all fat-soluble drugs.

Drug Metabolism Drug metabolism is an area where the complexities of pharmacokinetics in older people are most apparent. The liver is the major organ of drug metabolism, although the intestines, lungs, and kidneys also have important drug metabolizing enzymes. Fortunately, in the absence of disease, drug metabolizing enzymes are not significantly affected by aging (McLean & Le Couteur, 2004). Other changes, however, are more significant. One factor that relates directly to drug metabolism is blood flow through the liver. Studies consistently have shown that there is a reduction of blood flow through the liver that accompanies age. If blood flow is decreased, then the extraction of drugs from the blood is decreased and metabolism is slowed. This does vary according to the physicochemical properties of the drug. Some drugs have a high extraction from the blood, that is, a large portion of the drug in the blood is extracted by the liver; these medications are the most affected with age (see TABLES 10-2 and 10-3). Subsequently, the half- life of these drugs is increased. The half-life of a drug is the time it takes for half the administered dose of a drug to be cleared from the blood. For example, the half-life of the antianxiety drug diazepam is 20 hours, meaning that if a person is given a 10 mg dose of diazepam, then 20 hours later there will be 5 mg left in the person's body. Diazepam is a good example of a drug that has a significant change in pharmacokinetics with aging. The half-life of 20 hours is for a person in her/his 20s. As a person grows older, this half-life of diazepam increases linearly. By the time a person is in her/his 80s, the half-life is around 80 hours, that is, it takes four times longer for a person in her/his 80s to metabolize the same dose of diazepam as a person in her/his 20s! This change needs to be taken into account when older adults are administered drugs which have significant hepatic metabolism.

TABLE 10-2 Hepatic Metabolism of Drugs in Older Patients

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Decreased Unchanged

Diltiazem Alprazolam

Fluoxetine Dolasetron

Citalopram

Amlodipine

Ondansetron

Quinine

Diphenhydramine

TABLE 10-3 Drugs with Low Oral Availability Due to Extensive Hepatic Metabolism

Cardiac Drugs Antidepressants

Alprenolol Amitriptyline

Metoprolol Desipramine

Labetalol Pain Medications

Diltiazem Morphine

Propranolol Pentazocine

Verapamil

Nifedipine

Nitroglycerine

One key aspect of drug metabolism is the metabolism of some drugs to active metabolites. That is, the drug breaks down but is transformed into another active drug. In general, the goal of drug metabolism is to inactivate a drug and make it more water soluble for easier extraction from the blood and excretion by the kidney. However, in some cases, after the drug has been metabolized, the resulting chemical is also active. Diazepam (Valium) is still a good example. Once ingested, it is metabolized to three active metabolites that also have half-lives. Although the half-life of diazepam is around 20 hours, a single

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dose with its active metabolites may continue to produce effects for up to six days. This adds a considerable length of time to how long active drugs remain in the body. If liver metabolism is slowed and if dosing is not adjusted, there will be a considerable buildup of drug in the older person leading to toxicity. Another lesson from this example is that in the older adult, the best benzodiazepine to use instead of diazepam or alprazolam (Xanax, which also has active metabolites) is oxazepam (Serax) which has no active metabolites.

Drugs are metabolized in the liver by a number of enzymes. The major group of drug metabolizing enzymes belongs to the class of cytochrome P450s. This group of enzymes has a number of subtypes. CYP3A4 (cytochrome P450 subtype 3A4) and CYP2D6 are two enzymes that together metabolize over 75% of prescription drugs in the liver. These enzymes vary considerably based on a person's genetic background, including their ethnic background, their previous exposure to drugs, and their current drug regimen. Although the amount of drug metabolizing enzymes in the body does not change with aging in the absence of liver pathology, the fact that the older patient will be on more drugs increases the risk of drug–drug interactions involving drug metabolism. Two drugs metabolized by the same enzyme will compete for the metabolism process, and this may slow their metabolism; although a more important clinical effect of drugs is in the inhibition or induction of these enzymes.

A number of therapeutically important drugs will inhibit the CYP450 enzymes. A list of some of these drugs can be found in TABLE 10-4. If a drug inhibits a P450 enzyme, the metabolism of other drugs will be slow and drug levels in the blood will increase, possibly leading to toxicity. This possibility should be considered in the event of unexpected toxicity of a drug (Lynch & Price, 2007).

TABLE 10-4 Drugs Which Inhibit or Induce Drug Metabolizing Enzymes

Drugs which inhibit drug metabolizing enzymes

St. John's Wort: herbal antidepressant

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Fluvoxamine (Luvox): antidepressant

Cimetidine (Tagamet): antacid

Amiodarone (Cordarone): cardiac medication

Ciprofloxacin (Cipro): antibiotic

Diphenhydramine (Benedryl): antihistamine

Ketoconazole (Nizoral): antifungal

Metronidazole (Flagyl): antibiotic

Drugs which induce drug metabolizing enzymes

Fluoxetine (Prozac): antidepressant

Carbamazepine (Tegretol): anticonvulsant, mood stabilizer

Pentobarbital: sedative, anticonvulsant

Other substances that induce drug metabolism

Tobacco smoke

Alcohol (ethanol)

Grapefruit juice

Another property of the P450 enzymes is their inducibility. Enzyme induction occurs when the liver produces more of the metabolizing enzyme after exposure to the drug. This, then, leads to increased metabolism of drugs metabolized by this specific enzyme, lower blood levels of the drug, and thus decreased therapeutic efficacy. Some drugs which induce P450 enzymes are listed in Table 10-4.

Drug Excretion The ability of the body to excrete drugs and metabolites is altered as a person ages. Most drugs and their metabolites are excreted in the urine through the kidneys. Another route of drug excretion is through the bile into the intestines. The kidneys show a decline in blood flow in the older adult similar to that seen in the liver. In addition, the kidneys show a decrease in function with aging, which further decreases excretion of drugs

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(Weinstein & Anderson, 2010). The effect of this on drug excretion is again dependent upon the properties of the drug. To some extent, all drugs will be extracted by the kidney and excreted either unchanged or as a metabolite in the urine. A list of some important drugs whose excretion is affected by renal changes is shown in TABLE 10-5.

TABLE 10-5 Some Important Drugs with Reduced Renal Clearance in Older Patients

Methotrexate—Chemotherapy agent;

suppresses the immune system

Vancomycin—Antibacterial agents

Ampicillin/sulbactam—Antibacterial agents

Ciprofloxacin—Antibacterial agents

Azithromycin—Antibacterial agents

Thus, the changes in blood flow affect both drug metabolism and excretion. The organ most involved will depend on the drug. Is it primarily metabolized by the liver or excreted by the kidney? These two factors are significant changes in pharmacokinetics that are affected by aging.

As noted in this section, many changes occur in the body as one ages and these changes affect how drugs are handled by the aging body. The most significant changes are in metabolism and excretion. While the liver continues to function well, blood flow to the liver is reduced. The kidneys are more affected with a decrease in function and blood flow. The healthcare practitioner needs to be aware of how individual drugs are affected by these changes; some more by the liver and others more by the kidneys. These changes make it important to consider that older patients may need to have decreased doses of many drugs to avoid high blood levels and toxic responses.

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▶ Pharmacodynamics Another aspect of pharmacology to consider in addition to pharmacokinetics is pharmacodynamics (i.e., what the drug does to the body). Pharmacodynamics involves examining how drug responses change based on changes in the cellular responses to drugs over the life span. How this is altered as a person ages is dependent on the changes that occur in the drug's target(s), that is, the receptors or proteins in the body that interact with the drug to produce the effect. Given the considerable number of drugs that are used to treat chronic diseases and the increased number of chronic diseases that we are treating in older patients, the need for this research is critical. Because the FDA does not require testing in special populations of people, including older adults, the current understanding of pharmacodynamics in older patients is limited. However, studies are beginning to emerge that address this issue (e.g., Bowie & Slattum, 2007) with a goal to improve pharmacological treatment options for the older patient. Knowing more about why a person responds to specific medications is important information to have, as it can help a physician make decisions regarding the best drug to prescribe.

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▶ Pharmacogenomics Pharmacogenomics is the study of how a person's genetic background determines both the pharmacokinetic and pharmacodynamic responses to drugs. There is widespread variability in how older individuals metabolize drugs based on the levels of subtypes of cytochrome P450 enzymes (Ruscin & Linnebur, 2017). Currently, lab tests are available to clinicians that can determine the levels of these enzymes in a patient, so that prescribers can be informed as to which drugs can be used to treat a particular disease. As testing of this type becomes more widely available in terms of access and affordability, coupled with better understanding of the genetics that affect drug response, this approach will become standard practice in the pharmacy.

Advances are also being made in understanding how genetics change the response to drugs. For example, people differ in their response to selective serotonin reuptake inhibitor (SSRI) antidepressants such as fluoxetine (Prozac). This difference is because there are two variants of the gene that encodes for the protein that fluoxetine interacts with, the serotonin transporter. Patients with the long allele (variation) of the gene have a more effective transporter, hence fluoxetine is more effective in these patients. A blood test is available that would allow a physician to test for the presence of this allele, which would then inform the decision of which antidepressant would give the best response (FIGURE 10-3).

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FIGURE 10-3 Physicians may use a blood test to determine the type of antidepressant to prescribe for a patient.

© BaLL LunLa/Shutterstock

Another area that is being studied is precision dosing, often as a part of personalized medicine. Cancer therapy has been using precision dosing for some time. Because of the toxicity of cancer drugs, doses need to be determined precisely to give the patient the right amount at the right time to minimize side effects while maximizing therapeutic response. Better attention to the exact doses given to the older patient would provide the same benefits. However, given the limited number of geriatricians (i.e., medical doctors specializing in working with older adults), this is very difficult to achieve, but may become possible with better training of primary care physicians.

A diagnosis of dementia can complicate precision dosing efforts. Patients with dementia have a more difficult time

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communicating if a drug is working and if they are experiencing side effects. So, it may take numerous attempts at communicating with them to elicit if they are experiencing drug effects or side effects. One of the most difficult areas to assess is pain. Since we have no noncognitive way of assessing a person's level of pain, we must rely on self-report. Because people with dementia may not be able to articulate about the pain they are experiencing, the practitioner might have to inquire repeatedly about the pain. Side effects may be apparent in noncognitive ways, such as falling asleep during a therapy session or signs of greater than normal confusion. Therefore, familiarity with a patient's baseline status and drug side effects are necessary to be able to raise concerns about over- or under-medication.

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▶ Anticholinergic Syndrome Anticholinergic syndrome refers to a collection of symptoms related to the effects of agents that block the neurotransmitter acetylcholine in the nervous system. The use of multiple drugs that have anticholinergic effects may result in a syndrome of symptoms that range from mild to severe. Anticholinergic syndrome may occur in a person at any age; yet, risk increases in older adults. A most important contributor is polypharmacy (i.e., taking more than one medications at a time).

The cholinergic system of the brain and the autonomic nervous system both use acetylcholine as a neurotransmitter. More specifically, acetylcholine is involved in learning and memory in the brain, and the central nervous system's influence on organs such as the heart, the bladder, and the gastrointestinal track. One type of acetylcholine receptor is the muscarinic receptor. This receptor is found throughout the brain, including areas involved in memory and cognition. General levels of arousal are also, in part, controlled by the cholinergic system. The parasympathetic nervous system also has acetylcholine as its neurotransmitter and muscarinic receptors as the primary receptors. Many organs are enervated by the parasympathetic nervous system, including the heart, intestines, salivary glands, and sweat glands. Activation of the parasympathetic nervous system decreases heart rate, increases the digestive system leading to increased intestinal motility, and increased salivation.

In the process of drug development, some classes of drugs have emerged from the large class of antihistamines. These include antipsychotics, such as chlorpromazine and haloperidol, and tricyclic antidepressants, such as imipramine and desipramine. In addition, the antihistamines have widespread usage. They are found in cold medications, sleep aids, and allergy medications. The antihistamines and other classes of drugs (Table 10-6) also act as antagonists at the muscarinic subtype of cholinergic receptors. That is, these drugs will block the physiologic action of acetylcholine at the muscarinic subtype

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of acetylcholine receptors. In addition, atropine-like drugs, which are also muscarinic receptor antagonists, are used in a variety of conditions, including motion sickness and diarrhea. Thus, it is possible to take multiple medications for multiple conditions that all have antagonist effects at the muscarinic cholinergic receptor. The symptoms of anticholinergic syndrome and drugs that produce these effects are shown in TABLE 10-6. A mnemonic used by medical students to remember the symptoms is shown in TABLE 10-7.

TABLE 10-6 Anticholinergic Syndrome

Symptoms of Anticholinergic Syndrome

Forgetfulness Tachycardia

Behavioral changes Dry mouth

Motor incoordination Constipation

Delirium Urinary retention

Blurred vision

Drugs with Anticholinergic Activity

Antihistamines Antipsychotics

Chlorpheniramine Chlorpromazine

Hydroxyzine Haloperidol

Diphenhydramine Olanzapine

Promethazine Thioridazine

Antidepressants Antispasmotics

Amitriptyline Hyoscyamine

Desipramine Dicyclomine

Doxepin

Nortriptyline

TABLE 10-7 A Mnemonic for the Symptoms of

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Anticholinergic Syndrome

Red as a beet,

Dry as a bone,

Blind as a bat,

Mad as a hatter,

Hot as a hare,

Full as a flask

Because of multiple chronic conditions, an older patient may be taking many different medications, some of which may have anticholinergic effects. An important concern is the effects of this polypharmacy on cognition, through action on the cholinergic systems in the brain. Current evidence on aging in the brain across many species shows a slow and continuous decline in the cholinergic forebrain system, as well as other neurotransmitter systems (Mather, 2016). If there is a rapid decline of this system in the brain, a person may develop dementia at an early age as occurs with early onset of Alzheimer's disease. As age progresses, the risk of dementia increases. Symptoms are mild at first, often starting with forgetfulness. Then, they increase and intensify over time into more serious symptoms, including confusion, behavioral changes, and/or paranoia. If medications (i.e., anticholinergic drugs) are used that work against these same receptors in the brain, the patient will show a worsening of symptoms. Stopping these anticholinergi