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SUPPORT SYSTEMS

PART IV

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Al l ri gh ts r es er ve d. M ay n ot b e re pr od uc ed i n an y fo rm w it ho ut p er mi ss io n fr om t he p ub li sh er , ex ce pt f ai r us es p er mi tt ed u nd er U .S . or a pp li ca bl e co py ri gh t la w.

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1CHAPTER

175

Primary Support Systems

The learning objectives for this chapter include understanding

The roles and importance of friends to older persons. ■ The various roles that grandparents play in the life of their grandchildren. ■ The stresses and strains that adult children and their parents experience in relating to ■ each other. The dynamics that develop between siblings in regard to parental care. ■ The importance, for older persons, of support groups. ■

Section A: The Family—Nuclear and Extended

HELP FROM THE FAMILY

Mary has had a stroke and needs a lot of supervision and help in everyday living. She has three children, but only one, a daughter, lives in her small town. That daughter, Jane, is 60 years old, is employed full time, and has a husband who is thinking of retiring in 2 years to a Southern state. Jane is increasingly angry, stressed, and fi lled with guilt over her feelings. She is also feeling guilty over not having more time for her own children and grandchildren. In addition, her mother is very controlling and does not accept assistance graciously.

Glen, who is 74, has been a widower for 2 years. He has a very close relationship with a 66-year-old widow. He is thinking about marriage but is concerned about what his two children will think. His signifi cant other has four children who believe that Mr. Diamond is too old for their mother. Both sets of children are concerned about who will get the estates if the parents marry.

Mary is taking care of her father who was, and continues to be, an alcoholic. He abused her when she was small. They have never talked about the abuse, but Mrs. Murphy deeply

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176 IV. SUPPORT SYSTEMS

resents taking care of her father whom she does not like. Out of religious convictions and feel- ings of guilt, she provides care, but is suffering from insomnia and anxiety attacks. Her sisters and brothers—there are fi ve—will not help in taking care of their alcoholic, abusive father. They want to put him into a nursing home, which is an idea he vehemently rejects.

IMPORTANCE OF FAMILY SUPPORT

There is little doubt that the family is the basic support system for most older Americans. In spite of the changes that have occurred in the American family, and all the negative things that fi ll the popular press concerning family relationships, the family is still the backbone of support for most older people. For emotional support, social interaction (vis- iting, spending holidays together, etc.), and various types of assistance in times of health problems or frailty in old age, the American family remains ready to help its older rela- tives. For married older couples, the family unit is the basic fi nancial support structure (Aronson & Weiner, 2007).

The type of family support an older person receives depends to a great extent on his or her family situation—whether married, widowed, separated, divorced, never married, has living children, is living alone, living with adult children, or living with friends or other relatives. To some extent, the type of family support older people obtain depends on whether they are living in the community or in an institutional setting such as a group home, retirement village, or nursing facility (Levine, 2004; Piver, 2004).

MARITAL RELATIONSHIPS/SUPPORT

All of these various family characteristics have a real impact on the kind and amount of family support an older person receives. Probably the best determinant of family sup- port for older people is marital status. Whether a person is married, has great impact on that person’s support within a family setting—including emotional, fi nancial, and phys- ical support, particularly in times of illness or infi rmity. Whether an elderly person lives in a family setting or lives alone has much to do with their being in or out of poverty.

Emotional Support and Happiness in Marriage

Marriage is much more than a fi nancial arrangement or organization for caregiving, at least ideally. It might be noted, incidentally, that many young people going into marriage are not aware of its wide-ranging fi nancial implications. The question needs to be raised: How happy are older people who have been married a long time? How happy are their marriages? Generally, most older couples have reported that their marriages actually improve over time (Fingerman, & Charles, 2010; Gilford, 1991). However, there are gen- der differences. Men tend to be more satisfi ed with their marriages and with the degree to which their emotional needs are fulfi lled than are women (Gilford, 1984; Rhyne, 1981). Like marriages in any age group, not everything is perfect with older couples. Older mar- riages have their strengths and weaknesses.

Divorce and Older People

As has been pointed out, marital status can strongly affect a person’s emotional and eco- nomic well-being. It infl uences living arrangements and the availability of caregivers for older people with illness and or disability. The following chart (Figure 12.1) illustrates the marital status of older people by age category.C

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12. PRIMARY SUPPORT SYSTEMS 177

Women

P e rc

e n t

65 and Over

65–74 Percent

75–84

85 and Over

Men

P e rc

e n t

100

Married Widowed Divorced Never Married

100

Married Widowed Divorced Never Married

FIGURE 12.1 Marital Status of the Population Age 65 and Over, by Age Group and Sex, 2008.

Note: Married includes married, spouse present; married, spouse absent; and separated.

Reference population: These data refer to the noninstitutionalized population.

Source: Older Americans 2010, Table 3.

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178 IV. SUPPORT SYSTEMS

As ongoing research indicates, divorce continues to be relatively infrequent among older people. For example, in 2008, 8% of men and 10% of older women were divorced (Older Americans 2010). This is an increase from 1960 when the rates were 1.2% for older men and 1.5% for older women (65+ in the United States, 2005). The increase in the pro- portion of divorced among the older population is likely to continue into the future as younger adults who experienced relatively high divorce rates in the 1970s and 1980s grow older (Butrica, Iams, & Smith, 2003; Sheehy, 2010b).

Remarriage

The success of a second marriage depends to a considerable extent on the reaction of the adult children of the elderly couple. Whether the couple like their children or not, they are bonded to them. Adult children who reject the remarriage of their parents put a lot of stress on that marriage. Many people spend holidays with their families, and if the children reject their parents’ remarriages, there is a real strain on what should be a happy event. Stepparenting is often diffi cult under the best conditions as two different family histories come together. Misunderstandings can easily arise. Some adult children are concerned about their parents’ estates and how stepparents may spend, or eventually acquire, what they believe to be rightfully theirs. However, most second marriages of older couples are successful, especially if they have a similar cultural history, approval of their children, and can coordinate, without friction, their fi nancial resources. The major reason for remarriage in old age is a desire for companionship (Brubaker, 1985; Sheehy, 2010b; Vinick, 1978).

ADULT CHILDREN SUPPORT

Over the years, study after study has shown that most of the help older people get when they need it comes for family members (Brody, 1990). Families provide 80% to 90% of personal care and help with various tasks around the house to maintain an older person, including transportation and shopping (Caregiving in the U.S., 2009).

Daughters and Daughters-In-Law

Of all family members, daughters and daughters-in-law provide the most care for older adults, even more care than do elderly persons’ spouses (Brody, 1990; Sheehy, 2010a; U.S. Department of Labor, 1986). This does not mean that sons do no caregiving. Perlin, Mullan, Stemple, and Skaff (1990) found that 16% of caregiving adult children were sons. As Brody (1990) pointed out, sons in general love their parents and do not neglect them. However, they tend to do tasks to help their elderly parents that to them refl ect more gender-appropriate roles such as home repairs and managing money, rather than direct hands-on care of older people. Sons tend to become the primary caregiver when they have no sisters or none living near the elderly parent who needs help. When they do give aid, they are usually assisted by their wives.

Caregiver Stresses

There is increasing recent evidence that caregivers are at risk of physical and/or psy- chological burnout. Some caregivers experience a lack of sleep, and a continuing lack of sleep can lead to a decline of health (Sheehy, 2010b). In addition, studies have indicated

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12. PRIMARY SUPPORT SYSTEMS 179

“that long-term caregivers are at high risk for . . . immune system defi ciency, depression, chronic anxiety, loss of concentration, and premature death” (Sheehy, 2010a, p. 72).

Detailed information on understanding caregiver behavior, caring for the care- giver, role reversal, and dealing with care recipient resistance is explored in the Practical Application at the end of Part IV of this textbook.

Racial Differences in In-Home Care

Black Americans and Whites have a different probability of moving into a nursing home. In addition, a study in the Sept/Oct (2006) issue of Health Affairs found that Black Americans are twice as likely as Whites to be in nursing homes that are closed by the Medicare and Medicaid programs because of their defi ciencies in care (65+ in the United States, 2005). They also found that Black Americans are about 3 times as likely to be in nursing homes that predominantly care for poorer patients receiving Medicaid assistance. This means that those nursing facilities have much less funding to care for patients because of the low payments from the Medicaid program (Stephens, Townsend, & White, 2000).

GRANDPARENT SUPPORT

What is changing is the increased role older people are playing in the lives of their grand- children. To put these changes in perspective, it is important to realize that the ranks of the young-old (aged 65–74) are growing rapidly with people who tend to be healthier, wealthier, and more mobile than persons of these ages in previous generations. Added to the young-old are many persons in the aged category (aged 75–84) who continue to have the health, vigor, and resources to play active grandparenting roles along with the mil- lions of persons who are becoming older (aged 55–64), many of whom are already retired. This is part of the new paradigm of aging (Musil, 2010).

These growing ranks of active, energetic grandparents face requests for intergen- erational assistance as a result of many changes in the American family. Some, such as the need to care for grandchildren as a result of the drug culture that has affected much of the nation, are leaving many children with no effective parental support. Other changes are the result of changing lifestyles, which lead to changing cultural norms. The rise of single-parent families by choice or as the result of the high national divorce rate has resulted in additional care of children by grandparents. In addition, the dramatic change in the number and percentage of women working outside of the home has had an impact on the need for direct grandparent help with young children (Simmons & Dye, 2003).

The Changing Roles of Grandparents

Grandparenting is not a new role. For decades, there have been endless stories and anecdotes about grandparents who take pleasure in “spoiling” their grandchildren. Grandparenting has been portrayed as an opportunity to indulge children’s children in ways a person never could or would for her or his own.

As some of the popular media have pointed out, times, social roles, and expecta- tions continue to change. With the multigenerational family (including the four-genera- tion family) becoming more prevalent, many of today’s grandparents are taking on roles that are more complicated and diffi cult than the old stereotypes would have us believe (Larsen, 1990/91).

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180 IV. SUPPORT SYSTEMS

Grandparents as Substitute Parents

One of the most signifi cant shifts that has occurred in American society in recent years is the rapid growth in the number of grandparents who have taken on the role of raising their grandchildren. They have become stand-ins or surrogate parents for these children due to various factors including divorce, drug addiction, illness, and, at times, abandon- ment of their children. These situations are sometimes referred to as skipped generation households where a generation of parents is missing. The following data further illustrates this situation:

A 2003 Supreme Court decision gave foster care benefi ts to grandparents raising ■ their grandchildren. The Court ruled that benefi ts could not be denied to rela- tives if they would otherwise be eligible to be foster parents. Older grandparents, no matter how motivated, can fi nd caring for grandchildren to be very tiring. Although the research is limited, there seems to be an emerging category of great- ■ grandparents who are raising great-grandchildren, often ending up in a situation in which the very old are raising the very young. Society will increasingly be faced with political questions of how to support ■ grandparents raising children. What fi nancial subsidies should low-income grandparents receive? Should they receive housing subsidies? Should they receive social work support assistance? If so, what type or assistance should that be?

Grandparent Support Groups

Support groups have played important roles in assisting grandparents who fi nd themselves in these diffi cult roles. Grandparents Raising Grandchildren, Grandparents as Parents, Grandparents Against Immorality and Neglect, Second Time Around Parents, Grandparents United for Children’s Right, Inc., and From Generation to Generation are examples of these types of support groups. “For sure it helps us—we’ve all learned to laugh again,” said Paula Browne of Grandparents as Parents in California. “But it also helps the kids” (Larsen, 1990/1991, p. 34). Support groups for grandparents raising their children’s children are helpful because people come to them in different stages of acceptance and are able to draw emotional support from the participants who have already worked their way through many of the situations that arise in this diffi cult role.

Grandparents as Babysitters

Unlike most European countries, the United States does not have a coordinated, state- supported system of child daycare. Essentially, each family is responsible for its own childcare. Specifi c childcare programs are established for specifi c groups of people or in conjunction with some specifi c programs. In the main, childcare is the responsibility of each family. It can be very expensive. Child day care can be so expensive for a family that the cost effectiveness of a parent’s participation in the paid labor force may come into question depending on how much a parent earns. This question especially applies to sin- gle mothers on AFDC (Aid to Families with Dependent Children) who, if they return to the workforce, are stuck in minimum-wage jobs and loses income and benefi ts that come with staying on welfare and not going back to work. Why return to work if income and benefi ts from welfare are lost, and in addition, they must spend a considerable amount of money on childcare?Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

12. PRIMARY SUPPORT SYSTEMS 181

Section B: Other Support Systems

HATTIE’S FRIENDS

Hattie has lived most of her adult life in the same house. Her husband built it when they were fi rst married. She raised her three children there. Her church and doctor’s offi ce were in a shopping center four blocks away. Hattie is now 89 years old. One of her three children died over 10 years ago, and the other two live on opposite sides of the nation. She had a lot of friends over the years, but many of them are either dead, confi ned to nursing homes, or living with or near their children. With the loss of her husband 2 years ago, and with her children living great distances away, increasingly Hattie has relied on her friends for mutual support in fac- ing the changes and losses in her life. In the past 6 months, Hattie’s church has announced it is relocating to the suburbs, where most of its members live. Her doctor’s offi ce, along with other offi ces and stores in the neighborhood shopping center, is being demolished for a new urban freeway. Last week her only remaining friend, who was still driving in the daylight hours, suffered a stroke.

Hattie’s children, who have been providing for some home-help services for their mother, are encouraging her to move to a congregate living facility for older people that has a continu- ing-care option, meaning she can be provided any level of assistance she needs as she grows older.

Feeling all alone in her old house and neighborhood, Hattie is willing to consider moving, but she is afraid because she doesn’t know anybody in the facility her children have suggested. How can she survive without her old friends? Will she still be able to see those friends if she moves to the new facility? Will she be able to make new friends at age 89? With her husband dead the past 2 years and her children many hours away, friends have been a key component of Hattie’s life. She has passed the time with them when they have been able to get together, and she has been able to confi de in them in times of happiness and times of stress and loss.

FRIENDS

As important as families are in the support systems of older people, most people through- out their lives have an important source of mutual assistance that adds to their quality of life—friends. Few things are more important than good friends (Cacioppo & Berntson, 2005; Cacioppo, Hawkley, & Berntson, 2003; Cacioppo & Patrick, 2008; Giles, Glonek, Luszcz, & Andrews, 2005). Friends are important at any age from toddlers making their fi rst attempts at personal interaction in the sandbox to 99-year-olds recalling past events and reacting to today’s news. The only problem for the 99-year-olds is that many of their old friends are no longer around. So, new friends of various types often take on the roles of companions and confi dants.

Roles of Friends

It is important to note the roles of friends, companions, and confi dants. A companion is someone with whom a person can share activities and pastimes—go to the movies together, share a ball game, build and fl y model airplanes together. A confi dant is some- one to confi de in and share personal problems with—a person to lean on in times of stress and joy.

Friendship and close personal relationships enable one to age with better physi- cal and psychological health (Cacioppo & Patrick, 2008; Chao, 2012; Eisenberger, Jarcho, Lieberman, & Naliboff, 2006). Research continues to accumulate that being human means Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

182 IV. SUPPORT SYSTEMS

that there is a need to live in a network of relationships (Cacioppo et al., 2003; Giles et al., 2005). Daniel Goldman argued from his research that friendships are needed to function well. There is evidence that in addition to bringing about feelings of joy and contentment, friendships enable people to function well psychologically (Fingerman & Charles, 2010). In addition, friendships seem to lead to increased longevity. James Coan of the University of Virginia argued that persons who are friendless have an increased probability of devel- oping more chronic health problems, more accidents, and even more psychiatric prob- lems (Coan & Allen, 2004, 2007). He stated that friendlessness can be compared to the added health risks brought about by obesity, smoking, and a lack of exercise.

Friends and Feelings of Well-Being

Research has shown that having close ties with friends is more important to an older person’s well-being than are family ties (Crohan & Antonucci, 1989; Eisenberger, 2006). Friendships tend to help people maintain a positive self-image even in the face of major problems. A positive self-esteem is important for happiness and contentment as well as for the ability to care for others (Antonucci, 1990; Cagley, 2009). John Cacioppo, in his research, argued that we are “hard-wired” from birth to need personal relationships (Cacioppo & Berntson, 2005). He stated that in people who are lonely, the body increases secretion of the hormone cortisol. Prolonged excessive cortisol production can increase cardiovascular disease (Cacioppo et al., 2003). He also stated that his research showed that with loneli- ness there can also be a heightened danger of loss of sleep, and increasingly, research has shown the need of the body for at least 7 hours of sleep a night. Social networking and relationships have an impact on the neural circuitry in the brain, and as Daniel Goldman has stated, friendships have a very positive impact on the brain, and in addition to other positive affects, it increases the functioning of the immunological system (Goldman, 1996, 2006). Capioppo stated that loneliness, isolation, and a lack of interaction with others can lead to physical and emotional decline (Cacioppo & Berntson, 2005; Cacioppo et al., 2003; Lester, Mead, Graham, Gask, & Reilly, 2012; Schnittger et al., 2012).

Friends and Coping With Life Changes

In addition to helping older people cope with isolation and loneliness, such as that brought about by loss of a spouse, friends can help older people with some of the major life changes they face (Goldman, 1996, 2006). For example, social support from friends is very helpful for women at the time of their retirement (Francis, 1990). Friends can play a crucial role in older people adjusting to a congregate living situation, such as moving into a retirement community or even a nursing facility (Atchley, 1994). Moving into a retire- ment living environment where a person already has a friend can be a great advantage, but even in these kinds of facilities, new friendships can be developed that can make a real contribution to a person’s adjustment. Lynn Giles in her research has found that an extensive network of close and intimate friends may increase life expectancy by as much as 22% (Giles et al., 2005). She believes that the evidence indicates that friends can help one get through diffi cult times and increase one’s optimistic moods.

RELIGION/SPIRITUALITY

Not all support systems are available to all older people. On the whole, family and friends are vital support mechanisms, as indicated previously. Economic supports, along with medical and long-term care, play key roles in meeting the basic needs of older people. C

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12. PRIMARY SUPPORT SYSTEMS 183

Some people, because of previous experiences, cultural backgrounds, or personal encoun- ters, tend to rely heavily on religion to help them cope with the changes and challenges of old age (Mackinlay & Dundon, 2012).

For many older persons, religion and/or spirituality enable them to cope, and give them reasons for survival (Sun et al., 2012). A particular church may give a chronically ill older person both support and a process by which they can continue to see themselves as contributing persons. Studies have indicated that many persons who are religiously involved have more psychologically close contacts than do oth- ers. Religion enables one to focus beyond oneself by being a part of a circle of relation- ships. Being a part of this social group enables a person to have a sense of purpose and to believe that they are neither totally isolated nor abandoned (Sloan, Bagiella, & Powell, 1999).

SUPPORT GROUPS

One form of support that has grown rapidly is support groups. Support groups have developed across the nation to deal with almost any problem people might have or think they have. Older people, and those moving toward the older ages, are included. As some writers have observed, in localities across the nation, people are streaming to churches and synagogues. A religious revival? Not really. Instead of sitting in the pews, they are going off to meet in rooms throughout the building sharing their innermost thoughts, darkest fears, deepest secrets, confounding frustrations, and strangest cravings (Leerhsen, Lewis, Pomper, Davenport, & Nelson, 1990).

Many people have discovered that sharing feelings, frustrations, and problems through talking and listening to people who are facing the same situations has a soothing and healing effect (Andrews, Clark, & Luszcz, 2002). They can motivate people to work out solutions through suggestions and encouragement. Most professionals see these types of groups as effective ways to cope with isolation—a condition that tends to make all other problems worse. “Just the sight of your fellow sufferers tends to make your pain a little more bearable,” said one self-help group organizer (Leerhsen et al., 1990, p. 50).

Support Groups and Older People

Support groups have proven to be very helpful to older people and the people who help them—particularly their caregiving family members. There are a number of support groups that provide assistance to dependent older people and their caregivers. Many of these are coordinated on the national level, including: United Ostomy Association (for patients and family members of persons who have had an ostomy, an operation to make an artifi cial opening to empty the large or small bowel or the bladder), American Cancer Society, American Heart Association, Arthritis Foundation, Courage Stroke Network, Huntington’s Disease Society of America, Leukemia Society of America, and many oth- ers. These support groups deal with a range of issues patients and their families face as they try to cope with their illnesses.

Support Groups for Caregivers

Some of the support groups focus on the people who take care of their elderly relatives and friends. One is the Alzheimer’s Disease and Related Disorders Association. Until it was founded in 1979, there was little organized support for the caregivers of Alzheimer’s patients. “The country was just barely becoming aware of Alzheimer’s then,” recalled C op yr ig ht @ 2 01 4. S pr in ge r Pu bl is hi ng C om pa ny .

184 IV. SUPPORT SYSTEMS

Dr. Robert Butler, former chair of the geriatrics department of Mt. Sinai Medical Center in New York City (cited in Barnhill, 1994, p. 15).

In order to survive the strains and stresses of being a caregiver to an Alzheimer’s patient, experts say that people need a place to obtain advice, share experiences, let off steam, and know that they are not alone in what they’re trying to do. Dr. Butler stated that, “exhaustion and burnout can make the caregiver a second patient. Support groups provide much-needed relief” (cited in Barnhill, 1994, p. 5), and more recent work has sub- stantiated the value of these support groups (McFadden & McFadden, 2011).

SUGGESTED RESOURCES

Caregiving.com: http://www.caregiving.com This website comprises a community of family caregivers sharing their stories, support, and

solutions. Weekly words of comfort, free webinars, articles specifi c to caregiving, and online support groups are featured.

Children of Aging Parents: http://www.caps4caregivers.org A national nonprofi t, CAPS offers support to caregiving children of older adults. Its website

includes a newsletter on current caregiving issues and links to other websites about caregiv- ing, Medicare, and support groups for caregivers.

GrandCare Support Locator: http://www.giclocalsupport.org/pages/gic_db_home.cfm Providing a way for grandparents to access national, state, and local groups, programs,

resources, and services to support caregiving, this website is a service of the AARP Foundation.

The New Old Age. Caring and Coping: http://newoldage.blogs.nytimes.com A blog focusing on the intergenerational challenges of caregiving for older parents; includes

articles, resources, and links.

Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

http://www.caregiving.com

http://www.caps4caregivers.org

http://www.giclocalsupport.org/pages/gic_db_home.cfm

http://newoldage.blogs.nytimes.com

CHAPTER

185

Formal Support Systems

The learning objectives of this chapter include understanding

The role of the Older Americans Act (OAA) in providing services and programs for older ■ adults. The components of the National Aging Services Network. ■ The types of services and programs, primarily offered through the Aging Services ■ Network, focusing specifi cally on older Americans. Why services may be underused on the one hand, and ways in which programs stretch ■ resources to reach more older adults than could otherwise be served, on the other. Senior Corps’ opportunities for older adults to volunteer in their communities. ■

VALUING HOME- AND COMMUNITY-BASED SUPPORT

Helen Cosgrove has lived all of her life in State College, Pennsylvania. Helen recently celebrated her 90th birthday, but she still values her independence. However, she’s had to give up driving and can’t get around without the use of a walker. Her children and grandchildren live in Maryland, so Helen depends on the generosity of friends and neighbors and her caring volunteers from Meals On Wheels to help her complete the daily tasks so many of us take for granted. For Helen, Meals On Wheels means much more than a nutritious meal. For the past two years, volunteers have delivered peace of mind, a friendly smile and the comfort of knowing that she is not forgotten. (“Stories From the Heart,” 2012).

Margaret Reilly, 89, is a walking testimonial for the Gulfport Multipurpose Senior Center. “It’s the spice of my life,” she says. “Whatever you want to do is there.” Margaret should know since she has volunteered at the Center for more than 25 years. . . . Now, she volunteers two hours a day, . . . plays canasta, visits the Fitness Center twice a week and participates in the Wii Fit group Thursday afternoons. “There’s no reason for anybody to feel lonely,” Margaret says. “Everyone

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186 IV. SUPPORT SYSTEMS

is so nice and so knowledgeable. I’ve learned a great deal being involved at the Senior Center.” (Oatley, 2011)

SHOULD THERE BE SPECIAL PROGRAMS AND SERVICES FOR OLDER ADULTS?

This chapter examines the range of services and volunteer opportunities that are available to older people in the United States. When it comes to services and programs, there seems to be growing pressure to justify their existence. In the face of increasing needs across our society with limited and diminished resources, many people are asking why special programs and services are offered to people just because they have reached a certain age. Much of this type of questioning relates to a more general ongoing debate concerning the basic role of government. Is the role of the government limited to basic services to maintain order and provide for the national defense with some emergency relief to the neediest citizens? Does the government’s role include providing programs, services, and resources to enhance the lives of various categories of people across America? Or, does the role of the government fall somewhere in between? Obviously, there is no easy or set answer to this ongoing debate. It is rooted in the politics of the nation and depends on the vitality of the economy. Politics is the art of making choices on a collective basis. In the United States, those choices are made democratically with input, pressure, guidance, and plain old-fashioned clout from a variety of sources. We will look at how this debate translates into formal support for older people in America.

NATURE OF PROGRAMS AND SERVICES FOR OLDER AMERICANS

Older people in America are the benefi ciaries of two basic types of programs: one type is designed for people of any age, and the second type is designed specifi cally for older people. An example of the fi rst type is the Supplemental Nutrition Assistance Program (SNAP), called the Food Stamp Program until 2008, originally established to alleviate malnutrition and hunger among low-income persons by increasing their food purchasing power. Any person can qualify if he or she meets income and asset guidelines. Relatively early in its history, the nation collectively decided that it was not a good thing to have starving people. Emergency aid to the poor usually included some type of starvation prevention, often in the form of distribution of excess commodities such as fl our, peanut butter, eggs, and powdered milk. Following an eight-county experimental antihunger program in 1961, the Food Stamp Act was passed in 1964, making it available to all states as an option to giving out food commodities. In 2010, 40.3 million Americans were tak- ing part in SNAP, nearly half (47%) were children, and 8% (3.2 million) were aged 60 or older (U.S. Department of Agriculture, Food and Nutrition Service, 2011). Eighty percent of older people who do receive SNAP benefi ts live alone and receive an average of only $119 per month in SNAP benefi ts.

Programs of the second type are designed specifi cally for older Americans. These programs arose out of collective decisions that it was in the best interests of the nation, as well as older people and their families, to design and develop programs and services spe- cifi cally to meet some of the basic needs of older people and to offer them opportunities to serve their communities. From the beginning of the United States under its Constitution in 1789, it took a long time to come to a collective decision to organize a part of govern- ment to specifi cally assist older persons, particularly on the national level. Remember, it was not until 1935 that Social Security was enacted into law. Prior to that time, in cases of abject poverty the welfare of older people was the responsibility of families, and to some

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13. FORMAL SUPPORT SYSTEMS 187

extent local governments. Of course, there were not nearly as many older people then as there are today. Not until 1965, when the OAA was passed, did we see a systematic, orga- nized approach to providing services and programs on a nationwide basis to enhance the lives of older people.

OAA: NATIONAL LEGISLATION TO ASSIST OLDER PEOPLE

The Older Americans Act (OAA) of 1965 was enacted to address the social service needs of older people. The Act grew out of the deliberations of the fi rst White House Conference on Aging, which was held in 1961, and continues to be the primary source of support for human and social services for older persons in the United States. Its mission is broad: to help older people maintain maximum independence in their homes and communities, to promote a continuum of care for the vulnerable elderly, and to avoid unnecessary and costly institutionalization. In successive amendments, Congress authorized targeted programs to respond to specifi c needs of the older population. While OAA programs are not entitlements, all people aged 60 and over—approximately 57 million individuals in 2010—are eligible for services regardless of income and need. To date, Congress has resisted any attempts to make the OAA programs and services means-tested, in other words, to require proof that income is low enough or that one has a demonstrated need. And yet, despite the broad sweep of services included in its mission, the OAA’s reach is constrained by modest resources.

Objectives of the OAA

The language of the OAA concerning the objectives for older Americans provides insight into the societal decision that resulted in the legislation. It states:

The Congress hereby fi nds and declares that, in keeping with the traditional American concept of the inherent dignity of the individual in our democratic soci- ety, the older people of our Nation are entitled to, and it is the joint and several duty and responsibility of the governments of the United States, of the several states and their political subdivisions, and of Indian tribes to assist our older people to secure equal opportunity to the full and free enjoyment of the following objectives:

1. An adequate income in retirement in accordance with the American standard of living.

2. The best possible physical and mental health which science can make available and without regard to economic status.

3. Obtaining and maintaining suitable housing, independently selected, designed and located with reference to special needs and available at costs which older citizens can afford.

4. Full restorative services for those who require institutional care, and a compre- hensive array of community-based, long-term care services adequate to appro- priately sustain older people in their communities and in their homes, including support to family members and other persons providing voluntary care to older individuals needing long-term care services.

5. Opportunity for employment with no discriminatory personnel practices due to age.

6. Retirement in health, honor, dignity—after years of contribution to the economy.

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188 IV. SUPPORT SYSTEMS

7. Participating in and contributing to meaningful activity within the widest range of civic, cultural, educational and training, and recreational opportunities.

8. Effi cient community services, including access to low cost transportation, which provide a choice in supported living arrangements and social assistance in a coordinated manner and which are readily available when needed, with emphasis on maintaining a continuum of care for vulnerable older individuals.

9. Immediate benefi t from proven research knowledge which can sustain and improve health and happiness.

10. Freedom, independence, and the free exercise of individual initiative in plan- ning and managing their own lives, full participation in the planning and oper- ation of community based services and programs provided for their benefi t, and protection against abuse, neglect, and exploitation. (Title I, Sec. 101, Older Americans Act of 1965, as amended in 2006, Public Law 109–365.)

Structure to Implement the OAA

To achieve the objectives of the OAA and to provide the services that result from them, the Congress established the Administration on Aging (AoA), which is within the Department of Health and Human Services. AoA administers most of the programs that come under the OAA and is the primary federal agency to advocate for older persons. An important idea in developing OAA’s framework was, when it comes to policy and program decisions, that decentralization of authority and the use of local control would make a more effective and responsive service system for those receiving services at the local level. Thus, AoA oversees an Aging Services Network (see Figure 13.1) consisting of State Units on Aging, Area Agencies on Aging (established under OAA in 1973), and Tribal Organizations (established under OAA in 1978).

The 56 State Units on Aging (state agencies), which are found in each of the states, the District of Columbia, Puerto Rico, American Samoa, Guam, the Northern Mariana Islands, and the Virgin Islands, are awarded federal funds to implement state plans on aging. The state agencies can be independent units of state government—for example, a state Department of Aging Services—or part of existing state agencies—for example, one of a state’s human service departments. However constructed, each state offi ce is respon- sible for developing a statewide plan to serve the elderly, and these plans are approved by AoA. AoA then distributes funding for programs and services through grants to the state agencies. Through these grants, states receive a set amount of funding and are given the fl exibility to design and operate OAA programs within federal guidelines. Grant amounts are generally based on funding formulas weighted to refl ect a state’s aged 60 and over population.

Area Agencies on Aging (AAA, referred to as triple As) are offi ces established by the state units. Each AAA develops its own 2-, 3-, or 4-year plan, as determined by the state unit, to facilitate and support the development of programs to address the needs of older adults within a defi ned geographic region, and support investment in their talents and interests. State units approve the AAA plans and typically allocate the funding they receive from the AoA to their area agencies. At the discretion of the state, an area agency can be a unit of county, city, or town government. It can even be a private, nonprofi t agency. State and local agencies are responsible for planning, developing, and co-ordi- nating an array of services within each state, though states also provide services to older adults through other funding, such as Medicaid, and through separate programs and departments. Local AAAs do not usually provide services directly to the elderly unless it is absolutely necessary to do so to ensure an adequate supply of such services. Instead,

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13. FORMAL SUPPORT SYSTEMS 189

they contract with local providers for services in their areas. A few states (Nevada is one), have no AAAs, and so they allocate funds directly to local providers.

The AoA also awards grants to tribal organizations to provide supportive and nutri- tion services that maintain the unique cultural and other needs of older Native Americans. Two Native American Resource Centers, one in North Dakota and one in Colorado,

address issues related to community-based long-term care among the Indian communi- ties on reservations.

A p p ro x i m a t e l y 20,000 local organi- zations provide ser- vices through all the sectors of the Aging Network (Govern ment Accountability Office

[GAO], 2011). For a humorous look at the diffi culties seniors can experience with such a large bureaucracy, watch Video 4.

U.S. Department of Health and Human Services

Administration on Aging

State Units on Aging (N = 56)

Area Agencies on Aging (N = 629)

Local Service Provider Organizations

Tribal Organizations

(N = 246)

Consumers

FIGURE 13.1 National Aging Services Network.

Source: Adapted from the National Association of Area Agencies on Aging, http://www.n4a.org

Episode 4: The Challenge of Bureaucracy

High Bandwidth:

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_

aging/success_aging_4_large/grcc_player.html

Low Bandwidth:

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_

aging/success_aging_4_small/grcc_player.html

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http://www.n4a.org

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_aging/success_aging_4_large/grcc_player.html

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190 IV. SUPPORT SYSTEMS

OAA’S SEVEN TITLES

To implement its objectives, the OAA authorizes seven “titles” that include a series of formula-based and discretionary grants. All programs are administered at the federal level by the AoA, except for the Title V community service senior opportunities program, which is administered by the U.S. Department of Labor. The following titles refl ect the basic programs of the OAA as amended through 2011.

OAA Title I: Declaration of Objectives; Defi nitions

Title I outlines the underlying philosophy of the legislation and its sweeping objectives. It also provides for defi nitions that apply to the act. In 1973, the age of the target population to be served was changed from the original age of 65 to 60.

OAA Title II: AoA

Title II establishes the AoA within the Department of Health and Human Services as the chief federal agency to advocate for older persons and sets out the responsibilities of AoA and the Assistant Secretary for Aging. The Assistant Secretary is appointed by the President, with the advice and consent of the Senate. Funding authorized under Title II goes toward program administration and Aging Network support activities. Aging Network support activities currently include the following:

National Eldercare Locator ■ , a service that helps identify community resources for older people (more information about this service is below); Pension Counseling and Information Program ■ funds six regional counseling proj- ects that help older Americans learn about and receive the retirement benefi ts to which they are entitled; Senior Medicare Patrol Program ■ funds projects that educate older Americans and their families to recognize and report Medicare and Medicaid fraud; National Long-Term Care Ombudsman Resource Center ■ provides training and techni- cal assistance to state and local long-term care ombudsmen; National Center on Elder Abuse ■ provides information to the public and profession- als, and provides training and technical assistance to state elder abuse agencies and to community-based organizations; National Center for Benefi ts Outreach and Enrollment ■ helps to enroll seniors and persons with disabilities into federal and state benefi ts programs for which they are eligible but not yet enrolled; and Health and Long-Term Care Programs Initiative ■ helps older Americans plan for long- term care services and supports so that they can maintain their independence in the community.

Information about services that are available in communities is the key to the services being used by older people and their caregivers. Having an array of resources does little good if the intended recipients do not know about them or do not know how to access them. As such, information and assistance become community-based social services in their own right. In 1993, the National Association of Area Agencies on Aging, with funding from AoA, established the Eldercare Locator, a nationwide call center and website that connects older Americans and their caregivers with infor- mation on senior services in their area. The call center (800–677-1116) is available between 9:00 a.m. and 8:00 p.m., Eastern time, Monday through Friday. The website Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

13. FORMAL SUPPORT SYSTEMS 191

(www.eldercare.gov) allows users to search for services by zip code, by city and state, or by topic, or engage in an online chat with an information specialist. Information is provided about such resources as adult day care centers, legal assistance, home health services, and transportation resources. The Eldercare Locator taps into an extensive network of organizations that are familiar with state and local community resources.

Almost half of the funding for Title II goes toward health and long-term care pro- grams, which include Aging and Disability Resource Centers (ADRCs). Nationwide, there are currently more than 200 ADRC sites, one-stop shop/single points of entry providing objective information and helping people access community-based services to help older individuals, and those of any age with disabilities, to continue to live at home.

OAA Title III: Grants for State and Community Programs on Aging

Title III provides funds for supportive services (Part B), nutrition services (Part C), health promotion (Part D), and family caregiver support (Part E), all with the goal of helping older people remain independent in their own homes and communities. (Part A addresses the purpose and administration for Title III.) The Government Accountability Offi ce (GAO, 2011) estimates that in fi scal year (FY) 2008, about 2.9 million people, con- stituting approximately 5% of the nation’s population aged 60 and over, received select home- or community-based services through programs authorized and funded by Title III of the OAA.

Part B: Supportive Services

A variety of supportive services are funded by Title III Part B, including transportation for those with or without mobility impairments; home care for those who have diffi culty performing daily activities such as bathing; case management; adult day care; and senior center activities. Part B receives just over 19% of OAA’s total annual budget ($367 million in FY2012).

Assuring the availability of transportation options for seniors was voted num- ber 3 among 50 top policy priorities at the most recent White House Conference on Aging, held in December 2005. This top ranking refl ects a growing understanding among aging-service professionals, transportation experts, and seniors themselves that transportation is a critical aspect in maintaining quality of life for older Americans. According to research reported in the American Journal of Public Health, both men and women are likely to live beyond the time they can drive safely, as much as 6 years for men and about 10 years for women (Foley, Heimovitz, Guralnik, & Brock, 2002). The Practical Application at the end of Part IV of this textbook includes a section on driv- ing and excellent suggestions for dealing with an older adult’s resistant to giving up driving.

Concerns about older drivers’ safety, coupled with the need to maintain mobility in the community, are responsible for much of the growing interest in transportation options. Among the ideas that communities are implementing are subsidizing taxicab fares, community shuttle buses, and volunteer driver programs. A nonprofi t organization dedicated to fostering “new ideas and options to enhance mobility and transportation for today’s and tomorrow’s older population,” the Beverly Foundation has developed fi ve criteria for evaluating the extent to which transportation options are senior friendly. Known as the Five A’s of Senior Friendly Transportation, they are: availability, accessibil- ity, acceptability, affordability, and adaptability. Table 13.1 provides a brief description of each criterion.Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

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192 IV. SUPPORT SYSTEMS

Home-Based Services

Perhaps the most important services that enable older people to remain in their own homes and communities are in-home services. In recent years, in-home care has been one of the fastest-growing components of Medicare. Too often admission to nursing homes, chronic-care hospitals, and other long-term facilities is used to meet the needs of impaired older individuals when appropriate assistance at home, or in the home of an adult child or friend, would be a better solution. Not only is staying at home usually much more cost effective, but also most older people want to remain in the familiar surroundings of their own home.

In-home services may be provided by medical professionals, home health aides, or personal care aides. Nurses, physicians, and physical therapists, for example, can provide medical care. Home health aides are trained to provide routine health care such as chang- ing bandages and dressing wounds, applying topical medications, and monitoring or reporting changes in health status to a supervising medical professional. They may also provide personal care such as bathing and dressing and, in some states, they may be able to administer medication. Personal care aides may assist with housekeeping (e.g., mak- ing beds, laundry), preparing meals, shopping, and running errands.

Being able to afford in-home services is a major problem for many older persons. Title III provides some support for in-home services through local AAAs or state units, with the primary purpose of keeping older people in their own homes and out of long- term care institutions for as long as possible. In-home services may also be covered by Medicare, Medicaid, and client fees. Medicare covers short-term health-related services and clients who meet Medicare eligibility requirements (Chapter 14 provides informa- tion about Medicare coverage for in-home services). Medicaid can also be used to pay for in-home services when the client and the service meet Medicaid eligibility requirements, which include strict income guidelines. Finally, there are proprietary (for-profi t) in-home service agencies that offer services for fees paid by the clients. AARP has excellent guide- lines for hiring a home care worker; they are available online through AARP’s website (http://www.aarp.org/relationsips/caregiving-resource-center/providingcare).

Case Management Services

Case management services include assessing needs for an individual, developing a plan of care, locating appropriate services, coordinating services, authorizing and arranging for services, monitoring services, and monitoring and reassessing needs. They are usually done by a qualifi ed person, often a nurse or social worker, or team. In the case management process, the case managers can help determine eligibility for various services as well as

TABLE 13.1 The 5 A’s of Senior-Friendly Transportation

CRITERION DESCRIPTION AND EXAMPLES

Availability Transportation exists and is available when needed.

Accessibility Transportation can be reached and used (bus stairs can be negotiated, bus seats are high enough, bus stop is readable, vehicle comes to the door).

Acceptability Standards relate to conditions such as cleanliness of vehicle, safety (stops located in safe areas), and user-friendliness (courteous, helpful drivers).

Affordability Costs (fees) are affordable, comparable to or less than driving a car, and vouchers or coupons help defray out-of-pocket expenses.

Adaptability Transportation can be modifi ed or adjusted to meet special needs (wheelchair can be accommodated, trip chaining is possible).

Source: Beverly Foundation (2010).

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13. FORMAL SUPPORT SYSTEMS 193

assist with applications for government-sponsored programs. Case management services are becoming increasingly critical as service delivery systems become more complex and the number of older people who need in-home services continues to grow.

Many caregivers are hesitant to call someone into their home to help with this kind of assessment. Most think they know what needs to be done, and most want to do what needs to be done by themselves. Many think it is their duty and their responsibility, but deep down they also know that they cannot do everything. They cannot continue to give around-the-clock care and continually worry about frail, elderly parents without paying the consequences in terms of personal health, family unity, and emotional well- being. With case management, there is usually no obligation after the initial assessment. Suggestions may be followed, rejected, or modifi ed. Using any of the services and follow- ing some of the suggestions for help do not mean that caregivers are abandoning their responsibilities to their loved ones. It means that they are wise enough to know that they cannot do everything by themselves all the time. By using a case management approach, family caregivers can plug in the types of assistance that are needed so that they can con- tinue to be effective caregivers. It means that they are using their own resources in more effective ways.

Case management services can provide adult children who live far away from their aging parents the opportunity to assist in the care of their elderly parents without having to move near them, or without moving their parents near them. Some agencies, such as the Jewish Family and Children’s Agencies, have developed an Elder Support Network through which family members are able to arrange for case management and supportive services throughout the nation with fees based on a sliding scale determined by the fam- ily member’s income. Private care managers are springing up across the United States and can be accessed through the National Association of Professional Geriatric Care Managers.

Adult Day Care

First organized in England in the 1940s, adult day care is a response to the need for fam- ily caregivers to have relief from caring for dependent older people on a regular basis. Unlike senior centers, adult day care programs and centers are usually not “drop-in” situ- ations. They are generally offered Monday through Friday during the day, with clients attending a regular number of days each week for up to 8 hours per day. Adult day care centers offer family caregivers opportunities to continue to work outside the home or participate in any activity, free for some hours each day from the responsibilities of caring for a dependent older person.

The range of services provided by adult day care centers include: screening for physical conditions; medical care (generally arranged with an outside physician); nursing care; occupational, physical, and recreational therapy; social work; transportation; meals; personal care; educational programs; and counseling. Funding for these programs can come from OAA’s Title III, Social Services Block Grants, Medicaid, and fees paid by users and their families. These centers may be located in an independent facility, a senior cen- ter, a neighborhood center, a hospital, or a religious organization. Day care has become an important component of community services available to older people and their families. It plays a key role in alleviating isolation, preventing or delaying institutionalization, and providing some relief for families from caretaking responsibilities.

Multipurpose Senior Centers

Contrary to popular misconceptions, senior centers are not places where older people can live, such as assisted living facilities or nursing homes. Instead, multipurpose senior cen- ters are usually community focal points for older people to access resources and services Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

194 IV. SUPPORT SYSTEMS

funded through the OAA. Although the history of a center for older people goes back to a program developed in New York City in 1943, senior centers were not funded through the OAA until 1975. Now, nearly 11,000 senior centers serve 1 million older adults every day (National Council on Aging , 2012).

Senior center programming is usually of two types: (a) services, and (b) recreation and education. Common services, in addition to meals, are counseling and referral; assistance with living arrangements and employment; health programs, including screening clinics and health education; protective services; legal and income counseling; friendly visit out- reach programs; homemaker assistance; telephone reassurance; home repair programs; and transportation assistance. In Malden, Massachusetts, for example, the Mystic Valley senior center offers programs that benefi t “eight communities where 52,000 elders reside; deliv- ers 1,700 meals every day, operates 15 senior dining sites, and provides referrals, services, and critical support to 10,000 individuals every year” (The Beacon, 2011). Senior centers also provide a place where seniors can gather for social interaction and recreational and educa- tional activities, which may include arts and crafts; nature, science, and outdoor life; drama, music, and dance; physical activities; table games; excursions; and, speakers, lectures, and forums. Activities are usually designed to appeal to both men and women.

Often led by the active involvement of older adults in their communities, senior centers are incorporating programs to appeal to Baby Boomers, of whom more than 22 million are already 60 years of age or older, while continuing to serve present users. Some examples include tai chi and yoga classes, computer rooms, and coordination of volun- teer opportunities. Extending center hours so that seniors who are still employed can participate, and better marketing to reach potential new users have also been suggested (Fitzpatrick & McCabe, 2008).

Part C: Nutrition Services

Nutrition services are the most well known of the services supported by the OAA. They receive almost 43% of OAA’s funds ($811 million in FY2012). They are designed to provide balanced and nutritious meals in congregate settings, such as senior centers, community centers, and churches, or in the homes of those older adults who have diffi culties that limit their ability to obtain or prepare food. The OAA identifi es three purposes for the nutrition programs: (a) to reduce hunger and food insecurity, (b) to promote socialization of older individuals, and (c) to promote the health and well-being of older individuals by assisting them in gaining access to nutrition and other disease prevention and health promotion services. While improving the nutritional intake of older people, the congregate meals programs have addressed many other problems older people may face including social isolation, loneliness, and limited access to social and health services. Even homebound older people get a brief conversation along with their “meals on wheels.” There are 5,000 senior nutrition programs, serving over one million meals per day (congregate and home- delivered). Professionals who work at the nutrition program sites are aided by approxi- mately a million volunteers nationwide (Meals on Wheels Association of America, 2012).

Part D: Disease Prevention and Health Promotion

OAA grants “seed money” for programs whose purpose is to prevent or delay chronic conditions and promote health among older people. Part D receives barely more than 1% ($21 million in FY2012) of the total annual budget for OAA. State and area agencies are meant to use these federal funds to leverage other sources of funding. The types of activities that can be supported vary widely and include both group services, such as physical fi tness and chronic disease management classes, and individualized services, Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

13. FORMAL SUPPORT SYSTEMS 195

such as medical and dental screening, nutrition counseling, pharmacology consultation, and immunizations.

Part E: Family Caregiver Support

The National Family Caregiver Support Program recognizes the extensive demands placed on family members and friends who provide primary care for their loved ones. It funds some assistance and support for these caregivers. Training for caregivers, home rehabilitation and adaptations (e.g., safety bars in bathrooms), and respite care to give temporary relief from caregiving responsibilities are among the services funded.

Closely related to day care, respite care generally offers more intensive care on a limited-time basis for elderly persons who require ongoing care. This care may be in the caregiver’s home, or the dependent older person may be brought to a respite-care facility, which may be a nursing home or other long-term care facility. The length of the assistance may range from a few hours to a few days. In a second option for respite care, the elderly patient is brought to a group setting where he or she has the opportunity to socialize with others and participate in program activities. This type of service is increasingly being provided to Alzheimer’s patients.

Respite care is relatively new and generally underfunded by social-support funding systems. Some are being developed on a fee-for-service basis. Respite care in communi- ties is seen as an effective means of maintaining frail, dependent older people in their own homes for longer periods of time. This service helps the informal support system (family and friends) provide the care that dependent older people need. Overall, family caregiver support programs receive only 8% of OAA funds ($152 million in FY2012).

OAA Title IV: Activities for Health, Independence, and Longevity

Title IV provides authority for training, research, and demonstration projects in the fi eld of aging. Its four major purposes are

To expand the nation’s knowledge and understanding of the older population 1. and the aging process; To design, test, and promote the use of innovative ideas and best practices in 2. programs and services for older individuals; To help meet the needs of trained personnel in the fi eld of aging; and3. To increase awareness of citizens of all ages of the need to assume personal 4. responsibility for their own longevity.

Title IV has supported a wide range of projects related to income, health, housing, and long-term care. Funds are awarded to a wide range of grantees, including public and private organizations, state and area agencies on aging, and institutions of higher learning. In recent years, funds have been awarded to support a national Alzheimer ’s disease call center, multigenerational civic engagement projects, and a number of national organizations serving older minorities (National Health Policy Forum, 2012).

OAA Title V: Community Service Senior Opportunities Act

Title V, sometimes referred to as the Senior Community Service Employment Program (SCSEP), subsidizes part-time community service jobs for unemployed, low-income peo- ple aged 55 and older who have poor employment prospects. The Department of Labor C op yr ig ht @ 2 01 4. S pr in ge r Pu bl is hi ng C om pa ny .

196 IV. SUPPORT SYSTEMS

contracts with all 50 states, the District of Columbia, Puerto Rico, American Samoa, Guam, the Northern Marianas Islands, the U.S. Virgin Islands, and 18 national organizations that recruit and enroll workers who are then placed in community service jobs, in settings such as hospitals, schools, and senior nutrition sites. The 18 national organizations, which receive 78% of Title V funding, include the AARP Foundation, the Association National Pro Personas Mayores, Easter Seals, Experience Works, Goodwill Industries, the Institute for Indian Development, Mature Services, the National Able Network, the National Asian Pacifi c Center on Aging, the National Caucus and Center on the Black Aged, the National Council on Aging, the National Indian Council on Aging, the National Urban League, Quality Career Services, SER-Jobs for Progress National, Senior Service America, Vermont Associates for Training and Development, and the WorkPlace (National Health Policy Forum, 2012).

OAA Title VI: Grants for Services for Native Americans

This title, added to the OAA in 1978, provides grants for Indian tribal organizations, Alaskan Native organizations, and nonprofi t groups representing Native Hawaiians to develop supportive and nutrition services for older Native Americans. Supportive ser- vices include information and referral, transportation, and home assistance. In 2010, for example, grants for these services were awarded to 254 Indian tribal organizations and two Native Hawaiian organizations. Family caregiver grants were made to 219 Title VI organizations (National Health Policy Forum, 2012).

OAA Title VII: Vulnerable Elder Rights Protection Activities

Title VII was added to OAA in 1992. It authorizes the long-term care ombudsman pro- gram as well as a program to prevent elder abuse, neglect, and exploitation. The purpose of the long-term care ombudsman program is to investigate and resolve complaints of residents of nursing facilities, board and care facilities, and other adult care homes. It is the only OAA program that focuses solely on the needs of institutionalized people. Complaints may relate to action, inaction, or decisions of long-term care providers or their representatives that adversely affect the health, safety, welfare, or rights of residents. Other functions to be carried out by ombudsmen include representing the interests of residents before governmental agencies and seeking administrative and legal remedies to protect their rights. In 2010, approximately 1,200 paid ombudsmen were responsible for oversight of more than 69,000 residential care facilities, with a combined total of 2.9 million beds (National Health Policy Forum, 2012).

Under the elder abuse program, states are required to carry out activities to make the public aware of ways to identify and prevent abuse, neglect, and exploita- tion, and to coordinate activities of area agencies on aging with state adult protective services programs. Although funds are allocated to states based on the state’s share of the older population, ombudsmen are to serve all populations in facilities, regard- less of age.

Legal Assistance

Legal assistance and elder rights programs work in conjunction with other AoA pro- grams and services to maximize the independence, autonomy, and well-being of older persons. Legal programs under Title VII, as well as Title III-B and Title IV, provide and enhance important protections for older people.

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13. FORMAL SUPPORT SYSTEMS 197

Title VII requires each state to appoint a legal assistance developer (LAD). Similar to a state long-term care ombudsman, the LAD is responsible for developing and co- ordinating the state’s legal services and elder rights programs. Legal assistance provided under Title III-B protect older persons against direct challenges to their independence, choice, and fi nancial security. Areas of legal service may include assistance in: access- ing public benefi ts (e.g., Medicare, veterans benefi ts), drafting advance directives, deal- ing with issues related to guardianship, accessing available housing options, handling foreclosure or eviction proceedings that jeopardize independence, and advising on elder abuse issues, including fraud and fi nancial exploitation.

Title IV authorizes the National Legal Resource Center and Model Approaches to Statewide Legal Assistance Systems. The National Legal Resource Center (NLRC) serves as a centralized access point for a national legal assistance support system serving pro- fessionals and advocates working in legal and aging services networks. Core support functions include:

Case consultation, through the National Senior Citizens Law Center, to assist in ■ resolving complex legal problems impacting older people; Training, through the National Consumer Law Center, on a wide range of legal ■ and elder rights issues; Technical assistance in developing effi cient and effective legal and aging service ■ delivery systems, through the Center for Social Gerontology, and for legal help- line professionals, through the Center for Elder Rights Advocacy; and Information and resource development and dissemination through the American ■ Bar Association’s Commission on Law and Aging.

Model Approaches is a discretionary grant program designed to help states develop and implement cost-effective, replicable approaches to broaden and integrate state legal ser- vice networks. One effective approach is the use of legal hotlines or helplines, which also overcome the problem many older people have with transportation. In 2010, 29 states, Puerto Rico, and the District of Columbia had statewide legal hotlines (Center for Elder Rights Advocacy, 2011).

NEED AND UNMET NEED FOR SERVICES

Measuring need and unmet need for services is diffi cult. Despite AoA’s support and tech- nical assistance, requiring agencies to complete surveys can be complicated, costly, and once gathered, the resulting information may become outdated quickly. Furthermore, states differ in how they are structured and how they administer diverse funding for home- and community-based services. In some states, funding is administered across multiple agencies and the state offi ce on aging may not have access to information on older adults receiving services from sister agencies. Nevertheless, in preparation for the reauthorization of OAA, the U.S. Senate’s Special Committee on Aging asked the GAO to evaluate what is known about the need for home and community-based services such as those funded by OAA and the potential unmet need for these services. In response, the GAO (2011) analyzed data from a variety of national surveys (e.g., Current Population Survey, Health Retirement Study). It also conducted its own survey of 125 area agencies on aging, made site visits to four states, and interviewed additional state and national offi cials involved in Title III programs gathering information on requests for and use of services, use of funds, and the impact of the economic climate on requests and availabil- ity of Title III services.Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

198 IV. SUPPORT SYSTEMS

Nutrition

Many low-income older adults who are likely to need meals programs do not receive them. For instance, an estimated 19% of low-income older adults are food insecure and about 90% of these individuals do not receive any meal services. A survey by the GAO found that about 22% of agencies are unable to serve all clients who request home- delivered meals and the agencies noted that many older adults who would benefi t from meal services do not know that they exist or that they are eligible to receive them (GAO, 2011).

Assistance With Activities of Daily Living (ADLs)

The GAO has also determined that many older adults who have diffi culties with daily activities receive limited or no home-based care. For example, among older adults with three or more diffi culties with ADLs, 11% (more than a quarter of a million people) do not receive any help and 68% (2 million) receive only some help. In 80% of the cases where older adults receive some help, that help comes from family members. The available data do not allow an assessment of the extent to which the help received is suffi cient to meet a senior’s needs.

Transportation

Approximately 8 million older Americans are likely to need transportation services due to circumstances such as being unable to drive or not having access to a vehicle. People aged 80 or older, women, and those living below the poverty threshold are more likely to need these services. In a GAO (2011) survey, 62% of state and local agency offi cials reported that transportation is among the most requested support services, and that the unmet need is substantial. Analyzing data from several national surveys and databases, the American Public Transportation Association (2010) determined that only half to two thirds of the estimated need for transportation services is being met. In some communi- ties, lack of funding limits transportation to only essential medical treatments such as dialysis.

The reality is that the resources of most programs and services are not adequate to meet the demands for them by the rapidly growing numbers of older adults. Blazer and Sachs-Ericsson (2005) demonstrated that inadequately met basic needs, such as food, housing, and transportation, are signifi cant predictors of mortality in community-dwell- ing older adults. Individuals who experience problems in meeting basic needs are likely to have diffi culties “obtaining needed health care, using social support networks, and maintaining a safe living environment” (p. 303).

Stretching Resources

The actual appropriations for all the titles of the OAA have always been well under 1% of the federal budget, a proverbial “drop in the bucket.” Indeed, Torres-Gil (1992), in his book on public policy on aging, written prior to his becoming Assistant Secretary for Aging, questioned how so few dollars (relatively measured) in the hands of one small agency (AoA) within the mammoth Department of Health and Human Services could meet its goals. In FY2010, appropriations for the OAA totaled slightly more than one half of 1% of the federal budget—$2.328 billion out of a total budget of $3.6 trillion. Table 13.2 shows the distribution of funding for FY2012 among the titles of OAA.

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13. FORMAL SUPPORT SYSTEMS 199

Requests for all Title III services are dramatically up since the start of the Great Recession. Most agencies are scrambling for other funds and resources to at least main- tain services, and to increase services where they can (GAO, 2011).

State and local community agencies across the country actively seek additional fund- ing, more than doubling the funding received through the OAA. In addition, states leverage those funds with a variety of other funding sources, such as Medicaid. These organizations make concerted efforts and diffi cult choices in targeting those older adults and family caregivers in greatest social and economic need. Despite these efforts, states report that across programs they are not able to serve all other individuals in need. States believe OAA administrative fl exibility is one tool that assists them in maximizing their resources. (GAO, 2011, p. 98)

As a member of Nevada’s Commission on Aging, one of this textbook’s authors (JAS) marveled at the ingenuity and frugality of local agencies in meeting as many of the needs of seniors in their communities as possible. For example, many community agencies in Nevada garnered food donations, volunteer drivers, and donated vehicles to augment their meager funding for meal and transportation services.

In FY2009, on average, OAA funds comprised only 42% of local agencies’ Title III program budgets (GAO, 2011). Other sources of funding for Title III services come from other federal sources, state and local budgets, private donors, and in-kind and voluntary contributions, sometimes even from the clients themselves. The current law prohibits mandatory fees, but providers are allowed to ask for voluntary contributions for those receiving nutrition and supportive services. It is important to note, though, that seniors cannot be denied any service because they will not or cannot make a contribution for a service.

Recognizing its enormous responsibilities and limited funding to carry them out, the AoA follows OAA guidelines that require programs to target or make it a priority to serve older adults with the greatest economic and social need. This has come to mean primarily low-income persons, minority older persons, residents of rural areas, and the frail elderly. As the OAA is designed to provide services to all older persons regardless of income and need, Torres-Gil (1992) has noted that targeting services without alienating healthier, active, affl uent older persons is a real challenge.

The OAA has provided somewhat of a safety net for older adults, especially for those who may need the services that many state agencies and area agencies try to provide. Nevertheless, the provisions of the OAA continue to be overextended and underfunded. Every time the OAA is reauthorized more responsibilities are added to AoA’s portfolio without the increases in funding that would reasonably permit those responsibilities to

TABLE 13.2 Older Americans Act Funding for Fiscal Year 2012

TITLE SERVICES PERCENT (%) AMOUNT (MILLIONS)

II Administration 1.4 $ 27.3

III State & Community Programs 71.0 $ 1,358.0

IV Health, Independence, Longevity 1.2 $ 23.6

V Community Service Employment 23.4 $ 448.3

VI Native American Services 1.8 $ 34.0

VII Elder Rights Protection 1.1 $ 21.8

Source: O’Shaughnessy (2012).

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200 IV. SUPPORT SYSTEMS

be fully carried out. And, the number of older adults eligible for services is growing by leaps and bounds—every day 10,000 more Americans become eligible as they turn 60 years of age.

SENIOR CORPS: VOLUNTEER PROGRAMS FOR OLDER ADULTS

Many seniors certainly need the services that state agencies and area agencies on aging try to provide. Yet, it is also the case that a large proportion of older adults want to give back to their communities. There is no shortage of needs for their contributions. Of course, any individual can seek out ways to volunteer, but for older adults Senior Corps provides a means of easily fi nding and exploring options, and includes some perks, such as training and sometimes reimbursement for expenses such as transportation to volunteer sites.

Senior Corps is a program of the Corporation for National and Community Service, an independent federal agency created in 1993 to connect Americans of all ages and back- grounds with opportunities to give back to their communities and their nation. Senior Corps incorporated three long-standing programs—RSVP, the Foster Grandparent Program (FGP), and the Senior Companion Program (SCP)—that have linked Americans aged 55 and over with the people and organizations in their communities that need them most.

RSVP

Established in 1971 and now one of the largest senior volunteer organizations in the nation, RSVP offers a variety of volunteer opportunities to persons 55 years of age and older to share their knowledge, experiences, abilities, and skills for the betterment of their communities and themselves. These volunteers serve in many areas including youth counseling, literacy enhancement, refugee assistance, consumer education, crime prevention, housing rehabilitation, after-school programs, and respite care for older adults. Volunteers choose how, where, and how often they want to serve, with commit- ments ranging from a few hours to 40 hours per week. RSVP is open to all people ages 55 and over. Volunteers do not receive monetary incentives, but sponsoring organizations may reimburse them for some costs incurred during their service, including meals and transportation.

The Foster Grandparent Program

The Foster Grandparent Program (FGP), which began in 1965, provides loving and expe- rienced tutors and mentors to children and youth with special needs that limit their academic, social, or emotional development. Working one-on-one and serving between 15 and 40 hours a week, Foster Grandparents provide support in schools, hospitals, drug treatment centers, correctional institutions, and child care centers. Among other activities, they review schoolwork, reinforce values, and care for premature infants and children with disabilities. Volunteers must be 55 years of age or older. Those who meet low-income guidelines receive a small stipend. All FGP volunteers receive accident and liability insurance and meals while on duty, reimbursement for transportation, and monthly training.

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13. FORMAL SUPPORT SYSTEMS 201

The Senior Companion Program

The Senior Companion Program, which began in 1974, helps frail seniors and other adults maintain independence, primarily in the clients’ own homes, and enables seniors to return to home care settings after hospitalization or rehabilitation. Senior companions serve between 15 and 40 hours a week and typically assist between two and four clients. Among other activities, they help with daily living tasks, such as grocery shopping; provide friendship and companionship; alert health care profes- sionals and family members to potential problems; and, provide respite to family caregivers. Volunteers must be 55 years of age or over. Those who meet low-income guidelines receive a small stipend. All SCP volunteers receive accident and liability insurance and meals while on duty, reimbursement for transportation, and monthly training.

Through these three formal volunteer programs, each year more than 330,000 seniors contribute more than 96 million hours of service. Based on the estimated value of volunteer time —$21.79 per hour in 2011, according to the Independent Sector, (http:// independentsector.org/volunteer_time) a coalition of charities, foundations, corpora- tions, and individuals—seniors’ volunteer service is worth over $2 billion to the U.S. economy. Table 13.3 gives details on the number of volunteers in each program, the num- ber of clients served, and funding.

SUGGESTED RESOURCES

Eldercare Locator: http://www.eldercare.gov A public service of the Administration on Aging, this website connects older Americans

and their caregivers with information on a wide variety of senior services, ranging from Alzheimer’s to volunteerism. The ability to search by zip code or city/state makes it easy to fi nd local help.

National Association of Area Agencies on Aging: http://www.n4a.org This Association supports the national network of AAAs and Title VI Native American aging

programs, offering advocacy, training, and technical assistance. The website includes a direc- tory through which all AAAs and Title VI agencies can be located.

National Association of Professional Geriatric Care Managers: http://www.caremanager.org/ NAPGCM is an association with more than 2,000 members who provide a range of services

for older adults, which may include assessment, support, and referrals for individuals and

TABLE 13.3 Senior Volunteer Programs

RSVP FOSTER GRANDPARENTS PROGRAM

SENIOR COMPANIONS PROGRAM

Volunteers 296,100 27,900 13,600

Hours Served 60 million 24 million 12.2 million

Clients Served 837,000 232,300 60,940

Federal Funding $50.2 million $110.7 million $46.8 million

Nonfederal Support $42.9 million $33 million $22.9 million

Notes: Clients served by RSVP volunteers include 65,000 organizations, 96,000 children, and 676,000 frail elderly people. Statistical data from FY2010 and 2011. Federal funding shown was enacted for FY2012.

Source: Senior Corps (http://www.seniorcorps.gov)

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http://independentsector.org/volunteer_time

http://www.eldercare.gov

http://www.n4a.org

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202 IV. SUPPORT SYSTEMS

families. In addition to a wealth of information about geriatric care management, the website has an asy-to-use feature to search for care managers by geographic region.

National Association of States United for Aging and Disabilities: http://www.nasuad.org This Association, representing all 56 state and territorial agencies, seeks to design, improve,

and sustain the delivery of home- and community-based services for older adults and indi- viduals with disabilities. It provides many resources and information for these agencies, most of which is freely available to the public on their website.

Senior Corps: http://www.seniorcorps.gov/ Senior Corps connects today’s 55+ with the people and organizations that need them most.

Volunteers receive guidance and training in three programs: Foster Grandparent Program, Senior Companion Program, and RSVP.

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http://www.nasuad.org

http://www.seniorcorps.gov/

1CHAPTER

203

Medical Care, Medicare, and Medications

The learning objectives of this chapter include understanding

The importance of health professionals being well versed in geriatrics, the medical treat- ■ ment of older people. The major shift in the leading causes of death over the last 100 years, from acute to ■ chronic health conditions, and the most common chronic conditions that older adults experience. Vision diseases and sleep disorders that can accompany aging. ■ Basic facts about Medicare: who gets it, what it does and does not cover, and what it ■ costs. The challenges for older adults of managing medications. ■

EVERYBODY IS A LITTLE DIFFERENT—EVEN THE OLD

Peter is 86 and is beginning to develop glaucoma. He needs assistance in using the drops that he says he has to put into his eyes several times a day to reduce the pressure on his optic nerve. In addition, he suffers from diabetes, which has resulted in severe pains in his legs because of inad- equate circulation. He also has congestive heart failure, and as a result is frequently tired because of a lack of blood being pumped by his failing heart. Through all of these physical diffi culties, Peter remains in his own home because of the assistance of his 79-year-old wife and daily visits from a nurse.

Jennifer is 78 and suffers from osteoporosis. She has a “widow’s hump,” a curvature of the spine caused by deteriorating vertebrae, which makes her walk with a stoop. Her spine is forcing her upper body to curve outward, bending her head and neck down. She is worried about falling and breaking her hip, as happened last year to her 83-year-old sister. Her physician has told her that she must be very careful because her bones are very brittle.

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204 IV. SUPPORT SYSTEMS

When it comes to aging, medical care quickly becomes one of the most important issues facing people. This is particularly true for those in the two groups of the elderly that include the more advanced years—the aged (75–84 years) and the oldest-old (85 years and older), who are less likely that the young-old (aged 65–74 years) to retain excellent health and independent functioning. As people grow older, they are more likely to have health conditions that require attention and that hinder their ability to perform the daily tasks of living. And yet, the number of health care providers prepared to deal with a growing population of older Americans is woefully inadequate, as pointed out by a key report from the Institute of Medicine (IOM, 2008), entitled Retooling for An Aging America: Building the Health Care Workforce. In addition to recruiting and retaining more health care specialists in aging and more caregivers, the report concluded that, “all licensure, certifi cation, and maintenance of certifi cation for health care professionals should include demonstration of competence in the care of older adults as a criterion” (p. 161).

As an example of the inadequacy of the health care workforce, according to the IOM report there are only 7,100 physicians trained in geriatrics, the branch of medicine that focuses on older adults and their care, to serve an elderly population of more than 40 million. To serve only a slightly larger population of children, the American Academy of Pediatrics reports there are approximately 60,000 pediatricians. A true primary-care specialty, geriatrics includes hospital care, offi ce care, house-call medicine, day care, and nursing home care. Because geriatricians are trained to look at the whole person, they are able to differentiate between diseases and normal physiological aging processes, to man- age symptoms that stem from multiple diseases, and to develop an appropriate care plan for each patient, a plan that can minimize emergency care and potentially avoid place- ment in an institution. Unless health care professionals go into pediatrics, a substantial proportion of their patients will be over the age of 65 once they begin practicing.

CHRONIC AND ACUTE HEALTH CONDITIONS

Improved medical care and prevention efforts have contributed to dramatic increases in life expectancy in the United States during the past century. They have also pro- duced a major shift in the leading causes of death for all age groups, from infectious diseases and acute illnesses to chronic diseases and degenerative illnesses. Acute con- ditions are those that are expected to be of limited duration, and can range from simple bruises to heart attacks, pneumonia, or broken bones. They often require a hospital stay. Chronic conditions are those that are expected to be long-term and most often permanent, and may or may not require hospital stays. They include heart disease, high blood pressure, chronic obstructive pulmonary disease (COPD), diabetes, arthri- tis, hearing loss, and vision impairment. Chronic conditions are the leading causes of death for Americans aged 65 and older. Heart diseases (28.3% of all deaths), malignant neoplasms (cancers, 22.2%), cerebrovascular diseases (stroke, 6.6%), and chronic lower respiratory disease (6.2%) together account for 63% of all deaths in this age group (Heron, 2011).

Some chronic conditions can become disabling, threatening the person’s well-being and independence. That is why it is important to learn and practice self-management procedures that can improve health outcomes and quality of life. Dr. Kate Lorig and her team at Stanford University have developed a Chronic Disease Self-Management Program (CDSMP, Stanford Patient Education Research Center, n.d.) that focuses on building prob- lem-solving and coping skills as well as support to help people manage their own chronic conditions. CDSMP has been found to result in positive health outcomes and lower health care costs for people with a variety of chronic conditions, including arthritis, diabetes, and heart disease (Gordon & Galloway, 2007). Howard Falvey enrolled in a program. C

op yr ig ht @ 2 01 4. S pr in ge r Pu bl is hi ng C om pa ny .

14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 205

Now 64, he learned to control his diabetes without medication by adopting a healthier diet and exercising more frequently. “I learned to take charge of my own health . . . . A doc- tor can’t do that for you,” he said (cited in Tergesen, 2012, p. R9). The National Council on Aging is leading a Self-Management Alliance to promote collaboration among govern- ment, business, and nonprofi t organizations to make self-management an integral part of health care for people with multiple chronic conditions by 2020. Currently, 80% of older Americans are living with at least one chronic condition, and 50% have at least two such conditions. The top fi ve chronic conditions of older adults and the percentage of people age 65 and over who report having them are depicted in Figure 14.1.

Hypertension and Stroke

People can have hypertension (high blood pressure) and still feel just fi ne. That’s because signs of hypertension cannot be seen or felt. But, hypertension, sometimes called “the silent killer,” is a major health problem. If it is not controlled with lifestyle changes or medicine, or both, it can lead to stroke, heart disease, eye problems, or kidney failure.

Blood pressure is the force of blood pushing against the walls of arteries. When blood pressure is measured, the results are given in two numbers. The fi rst number, called systolic pressure, measures the pressure of the heartbeat. The second number, called dia- stolic pressure, measures the pressure while the heart relaxes between beats. Target blood pressure rates for older adults should be less than 140/90 mmHg, a rate that is a little higher than for level for younger adults, which is 120/80 mmHg (Aronow et al., 2011).

0 Hypertension

P e rc

e n t

Arthritis Heart Disease Cancer Diabetes

100 Men

Women

FIGURE 14.1 Percentage of People Age 65 and Over Who Reported Having Selected Chronic Health Conditions, by Sex, 2007–2008.

Note: Data are based on a 2-year average from 2007–2008.

Reference population: These data refer to the civilian noninstitutionalized population.

Source: Adapted from Older Americans 2010, Table 16a.

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206 IV. SUPPORT SYSTEMS

Anyone can get hypertension, but some people have a greater chance of having it, and one risk factor is age—the chance of having high blood pressure increases over time.

Hypertension is one of the main risk factors for stroke. In 2008, 114,508 people aged 65 years and over, died from a stroke (National Center for Health Statistics, 2012). A stroke, sometimes called a brain attack, occurs when a clot blocks the blood supply to part of the brain or when a blood vessel in or around the brain bursts. In either case, parts of the brain become damaged or die. The chances of survival and recovery are higher the faster emergency treatment takes place. Recovery can take months or years, and many people who have had a stroke never fully recover.

The good news is that blood pressure can be controlled in most people. To start, there are many lifestyle changes that can lower the risk, including: keeping a healthy body weight; exercising for at least 30 minutes a day most days of the week; eating a diet rich in fruits, vegetables, whole grains, and low-fat dairy products; cutting down on salt; keeping alcohol intake low; not smoking; and managing stress. If these lifestyle changes do not work well enough to control blood pressure, there are medications that can. These medica- tions do not cure hypertension, so if necessary, they will need to be taken for the rest of the person’s life. Lifestyle changes may help lower the dose of medication needed.

Arthritis

Arthritis is a disease that can attack joints in almost any part of the body, causing them to be painful and stiff. Some types of arthritis cause changes that can be seen and felt— swelling, warmth, and redness in joints—and may only last a short time, but be very uncomfortable, or there may be less pain, though joints are still being slowly damaged. Older people most often have one of three types of arthritis: osteoarthritis, rheumatoid arthritis, and gout.

Osteoarthritis starts when cartilage that pads bones in a joint begins to wear away. Once the cartilage has worn away, bones rub against each other. Osteoarthritis mostly occurs in the hands, neck, lower back, or the large weight-bearing joints of the body, such as knees and hips. Symptoms range from stiffness and mild pain that comes and goes to pain that does not stop, even when the person is resting or sleeping. Sometimes osteoarthritis causes joints to feel stiff after the person has not moved them for a while, for example, after riding in a car. The stiffness goes away when the joints are moved. Over time, however, osteoarthritis can make it hard to move joints, and it can cause disability if the back, knees, or hips are affected. Growing older is what most often puts people at risk for osteoarthritis, possibly because joints and the cartilage around them become less able to recover from stress and damage. Also, osteoarthritis in the hands may run in families. In the knees it is linked with being overweight, and in the knees, hips, or hands, it may be due to injuries or overuse.

Rheumatoid arthritis is an autoimmune disease, a type of illness in which the body attacks itself. It causes pain, swelling, and stiffness that lasts for hours (or longer), and it can happen in many different joints at the same time. While rheumatoid arthritis can damage almost any joint, it often occurs in the same joint on both sides of the body. It can also cause problems with the heart, muscles, blood vessels, nervous system, and eyes.

Gout is one of the most painful kinds of arthritis. It usually happens in the big toes, but other joints can also be affected. Swelling many cause the skin to pull tightly around a joint and make the area red or purple and very tender. Learning what brings on the attacks can help prevent future attacks. Eating foods rich in purines, such as liver and dried beans, can lead to a gout attack. Using alcohol and being overweight may make gout worse. Some blood pressure medications can also increase the chance of a gout attack.

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14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 207

The primary goals of treatment for arthritis are to prevent joint damage, manage pain, and maintain physical functioning in order to preserve a good quality of life. Getting enough rest; doing the right exercises; eating a healthy, well-balanced diet; and learning the right way to use and protect joints are keys to living with any kind of arthritis. Three types of exercises are best for arthritis: range-of-motion exercises, such as dancing, which relieves stiffness, maintains fl exibility, and keeps joints moving; strengthening exercises, such as weight training, which enhances muscle strength to support and protect joints; and, aerobic or endurance exercises, such as bicycle riding, which make the heart and arteries healthier, help prevent weight gain, and may also lessen swelling in some joints. The National Institute on Aging has a free booklet, entitled Workout to Go, on how to start and stick with a safe exercise program. (It can be downloaded at www.nia.nih.gov/ health/publication.)

Along with exercise and weight control, there are other ways to ease the pain around joints. Examples include using a heating pad or cold pack, soaking in a warm bath, or swimming in a heated pool. The right shoes and a cane can help with pain in the feet, knees, and hips when walking. There are also gadgets to help with opening jars or turn- ing doorknobs, for example. Some medicines can help with pain and swelling. When damage to joints becomes disabling or when other treatments do not help with pain, health care providers may suggest surgery to repair or replace affected joints with artifi - cial ones. Pain and arthritis do not have to be part of growing older. Pain and stiffness can be lessened and more serious damage to joints prevented by working with health care professionals.

Heart Disease

The term heart disease actually refers to several types of heart conditions. The most com- mon type in the United States is coronary artery disease (CAD), which can cause heart attacks, chest pain or discomfort (also called angina), heart failure, and arrhythmias. CAD happens when the arteries that supply blood to the heart muscle become hardened and narrowed due to atherosclerosis, the build up of cholesterol and plaque on the inner walls of arteries. It affects men and women equally.

Risk factors for heart disease include high cholesterol, hypertension, diabetes, ciga- rette smoking, being overweight or obese, poor diet, physical inactivity, and alcohol use. Risk can be determined by checking cholesterol, blood pressure, and blood glucose, and by examining family history of heart disease. The fi ve major symptoms of a heart attack are pain in the jaw, neck, or back; feeling weak, lightheaded, or faint; chest pain or dis- comfort; pain or discomfort in the arms or shoulder; and shortness of breath (Roger et al., 2012).

For those who already have CAD, there are steps to take to lower the risk of worsen- ing heart disease or of having a heart attack. Lifestyle changes such as eating a healthier diet, exercising, and not smoking are recommended. Medications may also be necessary. Prescription medications can treat risk factors such as high cholesterol, hypertension, an irregular heartbeat, and low blood fl ow. In some cases, more advanced treatments and surgical procedures can help restore blood fl ow to the heart.

Preventing or reducing risks of heart disease comes down to living a healthy life- style. A healthy diet, including plenty of fresh fruit and vegetables and foods low in satu- rated fat and cholesterol and high in fi ber, can prevent high blood cholesterol. Limiting salt or sodium can lower blood pressure. Maintaining a healthy weight and engaging in moderate-intensity exercise for at least 30 minutes on most days of the week are also helpful, as are not smoking and limiting alcohol use.

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208 IV. SUPPORT SYSTEMS

Cancer

Cancer is not just one disease, but many diseases in which the genetic material in cells becomes damaged or changed for a variety of reasons, some of which are known (such as environmental toxins, radiation, and excessive alcohol intake), and others of which are not. Abnormal cells divide without control and are able to invade other tissues (National Cancer Institute, 2012). Due to advances in early detection and treatment, people are liv- ing many years after a diagnosis of cancer. Approximately 63% of people diagnosed with cancer live for at least 5 years after diagnosis, and more than 50% live at least 20 years (Keating, Norredam, Landrum, Huskamp, & Meara, 2005). As a consequence, what was once thought to be a death sentence is increasingly viewed as a chronic condition.

A majority of cancers (78%) are diagnosed in people aged 55 years and older, and breast, cervical, colorectal, and prostate cancers are the most common types in older adults (Alibhai, 2006). The Centers for Disease Control and Prevention supports com- prehensive cancer control programs throughout the country. These programs provide an integrated and coordinated approach to reducing the incidence of cancer, morbidity, and mortality through prevention, early detection, treatment, and rehabilitation. These efforts encourage healthy lifestyles, promote recommended cancer screening guidelines and tests, increase access to quality cancer care, and improve quality of life for cancer survivors.

The number of new cancer cases could be reduced, and many cancer deaths could be prevented with early screening, especially for individuals at increased risk. Screening for cervical and colorectal cancers helps prevent these diseases by fi nding precancerous lesions so the lesions can be treated before they become cancerous. Screening for breast cancer also helps identify the disease at an early, often highly treatable stage. A person’s cancer risk can also be reduced by receiving regular medical attention, avoiding tobacco, limiting alcohol use, avoiding excessive exposure to ultraviolet rays from the sun and tanning beds, eating a diet rich in fruits and vegetables, maintaining a healthy weight, and being physically active. In some cases, vaccines can help reduce cancer risk; for example, the human papillomavirus vaccine (HPV) helps prevent most cervical cancers and some vaginal and vulvar cancers, if administered in young adulthood. Making can- cer screening, information, and referral services available and accessible to all Americans can reduce cancer incidence and deaths.

Type 2 Diabetes

Type 2 diabetes, also called adult-onset diabetes or diabetes mellitus, is the most preva- lent type of diabetes, and results from diffi culties in insulin production or action, or both. Diabetes can lead to serious complications and premature death. It can also be prevented, and those with diabetes can take steps to control the disease and lower the risk of com- plications. Black Americans, Hispanic/Latino Americans, American Indians, and some Asian Americans and native Hawaiians or other Pacifi c Islanders are at particularly high risk for type 2 diabetes and its complications. Among adults 65 years of age and older, 18.6%, have this type of diabetes (Older Americans 2010).

Diabetes can lead to serious complications, such as blindness, kidney damage, car- diovascular disease, and lower limb amputations. Controlling blood glucose, blood pres- sure, and blood lipids can lower the occurrence of these complications. Many people with type 2 diabetes can control their blood glucose by following a healthy meal plan and exercise program, losing excess weight, and taking oral medication. Others may also need insulin to control their blood glucose or medications to control their cholesterol and blood pressure.Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 209

Prediabetes is a condition in which blood glucose levels are higher than normal but not high enough to be classifi ed as diabetes. People with prediabetes have an increased risk of developing type 2 diabetes, heart disease, and stroke. Studies have shown that losing weight and increasing physical activity can delay, or even prevent, the onset of diabetes and return blood glucose levels to normal. In a large prevention study of adults 60 years and older at high risk for diabetes, the Diabetes Prevention Program Research Group (2002) showed that over a three-year period, lifestyle interventions reduced the development of diabetes by 71%.

Osteoporosis

Another chronic condition that is of great concern, especially for older women, is osteo- porosis. Osteoporosis, or “porous bone,” is a disease of the skeletal system characterized by low bone mass and deterioration of bone tissue. It leads to an increased risk of bone fractures, typically in the wrist, hip, and spine. Bone mass declines with age, especially among White Caucasian women after menopause. In 2008, among the 65+ population, 26% of women and 4% of men reported having osteoporosis (Older Americans 2010). To maintain bone health throughout life, it is important to reach peak bone mass—the genetic potential for bone density—in early adulthood. People with high bone mass when they are young will be more likely to have a high bone mass later in life. Inadequate calcium consumption and a low level of physical activity early in life could result in a failure to achieve peak bone mass in adulthood.

One of the major worries of people with osteoporosis is falling, which can lead to devastating consequences. Fall-related injuries cause signifi cant disability, loss of inde- pendence, early admission to nursing homes, and death. Each year as many as 12 million older adults experience a fall, and 2.6 million of those falls lead to some kind of medical attention, most frequently for fractures. Research has shown that medication manage- ment, tai chi (to improve balance), vitamin D supplements, and home modifi cations, such as removing hazards and installing safety features, can prevent many falls (Frick, Kung, Parrish, & Narrett, 2010).

Eye Diseases

A few serious conditions affecting vision can develop more readily in older people— macular degeneration, glaucoma, and retinopathy. Early detection can make a difference in the progression and prognosis for these conditions.

Age-Related Macular Degeneration

A leading cause of severe vision loss in adults over age 60 in the United States, age-related macular degeneration (AMD) occurs when the small central portion of the retina, known as the macula, deteriorates. The macula is the most important region of the eye because it is packed with light receptors that make focused, precise vision possible, such as that needed for reading, driving, sewing, and similar tasks. AMD can be detected during a comprehensive eye exam that includes a visual acuity test, which measures vision at various distances; a dilated eye exam, during which the pupils are dilated and the retina and optic nerve are examined; and tonometry, which measures pressure inside the eye. The causes of AMD are unknown, though some risk factors, such as smoking, obesity, hypertension, and family history, have been identifi ed. There is no cure, but treatment may prevent severe vision loss or slow the progression of the disease. Treatments include

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210 IV. SUPPORT SYSTEMS

laser therapy, drugs, and low vision aids. Researchers are currently investigating new surgical treatments and the use of stem cells too.

Glaucoma

Glaucoma is a group of diseases that can damage the eye’s optic nerve, resulting in vision loss and blindness. The risk is much greater for people over age 60, though it can occur in younger people. It also occurs more frequently in Black Americans and Mexican Americans, and in those with a family history of the condition. For reasons that are still unknown, excess pressure builds up in the eye because fl uid (aqueous humor) drains too slowly out of one or both eyes. Without treatment, people with glaucoma slowly lose their peripheral vision. Over time, straight-ahead vision may decrease, too, until no vision remains.

Although glaucoma cannot be prevented, regular eye check-ups are important because there are usually no early symptoms or pain, and the sooner glaucoma is diag- nosed and treated, the better the outcome. In addition to the vision tests for macular degeneration, glaucoma is diagnosed with two additional tests: a visual fi eld test, which measures peripheral vision, and pachymetry, which measures the cornea’s thickness. Prescription eye drops or pills and laser surgery are the most common treatments.

Retinopathy

Retinopathy is a disease of the retina, the light-sensitive membrane at the back of the eye, that can also lead to poor vision and even blindness. Weakening blood vessels lead to blood leaking into the front of the retina, formation of scar tissue, and retinal detach- ment, as well as swelling of the macula. Causes include arteriosclerosis, diabetes, and hypertension so controlling cholesterol, blood sugar, and blood pressure can help prevent retinopathy. A dilated eye exam can detect retinopathy. With early detection, new laser treatments can minimize loss of vision, otherwise surgery can stabilize vision.

Sleep Disorders

Four sleep disorders are more common among older people: insomnia, circadian rhythm disorders, sleep apnea, and leg movements, though, according to renowned sleep researcher, Dr. Sonia Ancoli-Israel (2004), none are inextricably connected to healthy aging. Insomnia affects up to half of the older population. It occurs when a person has trouble falling asleep or staying asleep. There are many possible causes of insomnia, including changes in personal circumstances (losing a loved one, relocating), which may result in a temporary bout of insomnia, or pain associated with conditions such as arthritis or heartburn, which often leads to chronic insomnia. In addition, many medications pro- duce insomnia. Alcohol can contribute to insomnia, too. A common belief is that drinking alcohol helps a person to fall asleep, which is true, but the problem is that a few hours later, it wakes the person up. Treatment for insomnia, of course, will depend on its cause, so it can range from counseling to pharmacotherapy.

Circadian rhythm disorders are another source of poor sleep. Older adults may not get a full night’s sleep if they fi ght age-related changes in circadian rhythms that make them sleepy earlier in the evening and cause them to wake about eight hours after that sleepiness sets in. Naps in the early evening can also disrupt sleep/wake cycles. Exposure to bright light, from the sun or bright light boxes, late in the day or early evening is effec- tive in resetting circadian rhythms.

Sleep apnea, or sleep-disordered breathing, is usually a chronic condition that dis- rupts sleep because it causes periodic pauses in breathing or shallow breaths. Symptoms include loud snoring and excessive daytime sleepiness. Untreated sleep apnea can increase Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 211

the risk of hypertension, heart attack, and stroke, as well as accidents. Continuous posi- tive airway pressure (CPAP), in which a device uses mild air pressure to keep the airways open during sleep, is the treatment of choice. Some people with sleep apnea can benefi t from weight loss (if they are overweight or obese), avoiding alcohol, or even sleeping on their sides rather than on their backs.

Movement disorders, typically periodic involuntary leg movements during sleep, can involve as many as three movements per minute and, like sleep apnea, they disrupt sleep and result in daytime sleepiness. Up to 45% of older people suffer from some type of periodic leg movement problems. Although there are no cures for these disorders, medications are available to treat symptoms (Ancoli-Israel, 2004).

MEDICARE: HEALTH INSURANCE FOR OLDER ADULTS

Medicare is the nation’s health insurance program for individuals aged 65 and over and certain disabled persons. Before Medicare was passed in 1965 and went into effect in 1966, approximately one in three older adults was living in poverty. That proportion has declined precipitously to less than one in 10 older people living in poverty (A Profi le of Older Americans 2011). A part of President Lyndon Johnson’s Great Society, Medicare goes a long way towards protecting the fi nances of older people and their families. Access to health care services is provided through Medicare’s four distinct parts: Part A (Hospital Insurance), Part B (Medical Insurance), Part C (Medicare Advantage), and Part D (Prescription Drug Benefi t).

Who Gets Medicare?

Medicare is an intergenerational program. To qualify for Medicare, a person must meet one of these eligibility requirements: be 65 years of age or older; be under age 65 with cer- tain disabilities; or, be of any age with end-stage renal disease (kidney failure requiring dialysis or a kidney transplant), or ALS (amyotrophic lateral sclerosis, Lou Gehrig’s dis- ease). According to the 2012 annual report of the Medicare Board of Trustees (2012), 48.7 million people were enrolled in Medicare in 2011, 40.4 million older adults (aged 65 and over), and 8.3 milllion people with disabilities. Older adults who are receiving benefi ts from Social Security automatically get a Medicare card in the mail 3 months prior to their 65th birthday. Those who have not applied for Social Security benefi ts (e.g., because they are still working) need to sign up 3 months prior to turning age 65. Medicare’s success is demonstrated in the 97% of older adults who reported in 2010 that they had a usual place to go for medical care, with only 3% saying that they failed to obtain needed medical care due to fi nancial barriers. With 93% of the nation’s noninstitutionalized persons aged 65 and older enrolled in Medicare in 2010 (A Profi le of Older Americans 2011), the program’s importance to the health of older Americans is clear.

Medicare Part A: Hospital Insurance

Part A of Medicare is hospital insurance that helps cover inpatient care in hospitals, skilled nursing care, home health care, and hospice. Most people do not pay a monthly premium to receive Part A benefi ts because they or their spouse paid Medicare taxes while employed for 40 or more quarters. People who do not meet this criterion may be able to pay for Part A coverage with a monthly premium ($451 in 2012). Medicare Part A benefi ts in 2012 are listed in Table 14.1.

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212 IV. SUPPORT SYSTEMS

TABLE 14.1 Medicare Part A Benefi ts 2012

HOSPITAL CARE Inpatient hospital services & supplies (semi-private rooms, general nursing, meals, drugs); inpatient mental health care with 190-day lifetime limit.

Days 1–60: $ 1,156 deductible

Days 61–90: $ 289/day

Days 91–150: $578/day*

Days 150+: all costs

SKILLED NURSING FACILITY CARE

Skilled nursing & rehabilitative services; supplies. After 3 days or more of hospital stay.

Days 1–20: no cost

Days 21–100: $144/day

Days 100+: all costs

HOME HEALTH SERVICES

Part-time skilled nursing care; physical & occupational therapy, speech-language pathology services, medical supplies, durable medical equipment. Must be homebound.

Covered services: no cost

Medical equipment: 20% coinsurance

HOSPICE CARE Medical, nursing, & social services; drugs for pain relief & symptom management; some durable equipment; spiritual & grief counseling; inpatient respite care. For those with certifi ed terminal illness & 6 or fewer months to live.

Hospice care: no cost

Prescriptions: $5 copayment each

Respite care: 5% coinsurance

Note: All Medicare Part A services must be medically necessary.

*Days 91–150 are lifetime reserve days, a total of 60 additional days that can be used during a lifetime.

Medicare Part B: Medical Insurance

Part B of Medicare is a voluntary program for Part A recipients. Most older people choose to enroll. In 2012, enrollees paid a $140 annual deductible and a monthly premium of $99.90 (the standard for individuals who earn $85,000 or less, and joint tax fi lers who earn $170,000 or less; the premium for higher income consumers may be higher). For those who choose Part B, the premium is usually deducted from monthly Social Security benefi ts. Part B benefi ts in 2012 are listed in Table 14.2. Passage of the Affordable Care Act added free annual wellness check-ups and most of the preventive services as new benefi ts for Part B enrollees. Details about how often these services are covered and costs that may be associated with them, as well as updates on coverage, are available through Medicare’s website (www.medicare.gov).

Medicare Part C: Medicare Advantage Plans

Medicare Parts A and B comprise what is called, Original Medicare. Original Medicare is a traditional fee-for-service (or pay-per-visit) coverage under which Medicare funds are used to pay health care providers directly for Part A and Part B benefi ts. Benefi ciaries can go to any hospital, physician, or other health care provider who accepts Medicare. On the other hand, Part C plans, or Medicare Advantage plans, are offered by private companies that contract with Medicare to deliver Part A and Part B benefi ts, along with other cover- age if they so choose, to those who enroll with them. Most plans also cover prescription C

op yr ig ht @ 2 01 4. S pr in ge r Pu bl is hi ng C om pa ny .

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14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 213

drugs (Part D). The four types of Medicare Advantage plans are: HMO (health mainte- nance organization), local PPO (preferred provider organization), regional PPO coordi- nated care plans, and PFFS (private fee-for-service) plans. These plans can determine their own rules for providing services, for example, whether enrollees must have a refer- ral to see a specialist, or whether they are restricted to using only those health care pro- viders, facilities, or suppliers that “belong” to the plan’s network of providers. Monthly premiums, deductibles, copayments or coinsurance, and limits on out-of-pocket costs are determined by each plan. In 2011, approximately 25% of Medicare benefi ciaries chose to enroll in Medicare Advantage plans (Medicare Board of Trustees, 2012). One of the ways the Affordable Care Act contains Medicare costs is by shifting “from a policy that favors private plans [Medicare Advantage plans] relative to original FFS [fee-for-service] Medicare by providing subsidies of over $11 billion a year to one that treats private plans neutrally by paying plans nationwide at rates similar to average costs in the FSS Medicare program” (Biles & Arnold, 2010, p. 9).

Medicare Part D: Prescription Drug Coverage

The Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA, P.L.108–173) established a new, voluntary prescription drug benefi t under a new Medicare Part D, effective January 1, 2006. Up to that time, a lack of public and private

TABLE 14.2 Medicare Part B Benefi ts 2012

MEDICALLY NECESSARY SERVICES

Physician, ambulance, emergency department services; some physical & occu- pational therapy, & speech-language pathology services; cardiac & pulmonary rehabilitation; outpatient chemotherapy; supplies (e.g., for diabetes).

20% coinsurance

DIAGNOSTIC TESTS & LABORATORY SERVICES

Diagnostic tests: CT scans, MRIs, EKGs, X-rays; lab services: certain blood tests, urinalysis, some screening tests.

Diagnostic tests: 20% coinsurance

Lab tests: no cost

HOME HEALTH SERVICES Part-time skilled nursing care; physical & occupational therapy, speech- language pathology services, medical supplies, durable medical equipment. Must be homebound.

Covered services: no cost

Medical equipment: 20% coinsurance

OUTPATIENT MENTAL HEALTH CARE

Visits with a mental health care professional in offi ce setting, clinic, or outpa- tient department for counseling or psychotherapy.

Most services: 40% coinsurance (20% by 2014)

PREVENTIVE SERVICES

Wellness visits: Welcome to Medicare preventive visit within 12 months of enrolling; annual wellness visits thereafter

Vaccinations: Flu (annual), hepatitis B, pneumonia

Screenings: Abdominal aortic aneurysm, bone mass, cancer (breast, cervical, colorectal, prostate, vaginal), cardiovascular, diabetes, glaucoma, HIV, depression

Other services: Screening & counseling for obesity, sexually transmitted infections; counseling for alcohol misuse & smoking cessation; medical nutrition therapy

No cost for any of preventive services listed above.

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214 IV. SUPPORT SYSTEMS

insurance coverage for drugs and rapidly increasing drug prices had resulted in mil- lions of older Americans not getting the prescription drugs needed to maintain their lives. Many seniors were forced to choose between buying enough food and paying for their prescriptions.

The Part D program helps cover the cost of prescription drugs. In general, to obtain their drug benefi ts, seniors must enroll in a plan when they fi rst become eligible for Medicare, or pay a delayed enrollment surcharge that is effective for the entire time indi- viduals are enrolled in Part D, usually for the rest of their lives. All plans must meet cer- tain minimum requirements, but there are signifi cant differences among them in terms of which drugs are covered and the costs (deductible, monthly premiums, and copay- ments/coinsurance). About 5% of Part D enrollees—people with individual incomes above $85,000 or joint incomes above $170,000—pay an income-related monthly adjust- ment amount in addition to their plan’s premium. Some Medicare drug plans have a coverage gap (also called the donut hole), which, through the Affordable Care Act of 2010 initiated by President Barack Obama, will be decreasing until it is closed by 2020. This gap means that after the benefi ciary and their drug plan have spent a certain amount of money for covered drugs, the benefi ciary has to pay the full costs of their prescriptions up to an out-of-pocket spending limit ($4,700 in 2012). Thereafter, Medicare covers all drug costs for the rest of the year.

Medicare drug plans must also cover all commercially available vaccines (such as the shingles vaccine), except for those already covered by Part B. Medicare Part D enroll- ees may also be eligible to participate in a Medication Therapy Management (MTM) pro- gram. MTM programs include a free discussion and review of all a senior’s medications by a pharmacist or other health professional to help achieve the most benefi t from the medications.

Plans can change from year to year and individuals’ needs may also change. To ensure that their plans continue to meet their needs, seniors should review them annu- ally and switch plans or make adjustments to them during the open enrollment period from October 15th to December 7th. Many states and the U.S. Virgin Islands offer help in paying for drug plan premiums or other drug costs, or both. Information about these State Pharmacy Assistance Programs can be found at https://www.medicare.gov/phar- maceutical-assistance-program/state-programs.aspx

What Does Medicare Not Cover?

Medicare covers many health care expenditures, but it emphasizes acute care and does not cover everything. Among the services and items not covered are:

Routine eye exams, hearing exams, dental care, and foot care (the latter may be ■ covered for certain conditions, e.g., diabetes); Eyeglasses and contact lenses (except after cataract surgery), hearing aids and ■ fi ttings, and most dental procedures (e.g., cleanings, fi llings, tooth extractions, or dentures); Nursing home care or long-term care, private duty nurses, and custodial care ■ (nonskilled personal care to help with activities of daily living), except for limited skilled nursing facility care under certain conditions; and, Health care outside the United States (with very limited exceptions). ■

In addition to assistance being available over the phone (1–800-MEDICARE) and online (www.medicare.gov), every state has a State Health Insurance Assistance Program

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14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 215

(SHIP) that provides free one-on-one health insurance counseling: This includes help in making health care decisions; information on programs for people with limited income and resources; and help with claims, billing, and appeals.

Medigap Supplemental Health Insurance Policies

Because Medicare has gaps in coverage and requires copayments, many Medicare-eligible people purchase Medigap insurance. A Medigap policy is health insurance sold by pri- vate insurance companies that can help pay for some of the costs of Medicare-covered services that Original Medicare does not cover (e.g., coinsurance, copayments, or deduct- ibles), and may include certain additional benefi ts.

In most cases, insurance companies can sell only standardized Medigap policies (identifi ed by letters A through N) so that consumers can compare them easily. Cost is usually the only difference between Medigap policies with the same letter sold by differ- ent companies. States determine the types of policies that can be sold to their residents, so there are variations among the states in the plans that are available. Any standardized Medigap policy is guaranteed renewable even for those with health problems, as long as the enrollee pays the premium. More information on Medigap policies is available on the Medicare website (at www.medicare.gov/medigap).

Help With Medical and Drug Costs

Low-income seniors may fi nd that Medicare’s costs are beyond their reach. Medicare Savings Programs administered by states may help pay Medicare premiums, and in some cases, the Part A and Part B deductibles, coinsurance, and copayments. Through the Qualifi ed Medicare Benefi ciary (QMB) program, states pay all Medicare premiums, deductibles, coinsurance, and copayments for seniors whose poverty-level incomes and resources make them eligible. For seniors with slightly more income and resources, the Specifi ed Low-Income Medicare Benefi ciary (SLMB) and Qualifying Individual (QI) programs will pay Part B premiums for those who are eligible, and for Qualifi ed Disabled and Working Individuals (QDWI), the state will pay Part A premiums. Information about these Medicare Savings Programs can be found at local Social Security offi ces, and on Medicare’s website (www.medicare.gov) under “Help with Medical and Drug Costs.”

Funding Medicare

Medicare is paid for through two trust fund accounts held by the U.S. Treasury. These funds can only be used for Medicare. The Hospital Insurance (HI) Trust Fund pays for the Part A program and its administration (including paying benefi ts and combating fraud and abuse). It is funded primarily through payroll taxes on employees (1.45% of wages), which are matched by employers. Other sources of funds for the HI Trust Fund include interest earned on Medicare trust fund investments, income taxes paid on Social Security benefi ts, and Part A premiums from people who pay a premium. The Supplementary Medical Insurance (SMI) Trust Fund pays for the Part B and Part D programs and their administration. It is funded through a combination of premiums paid by enrollees in Part B and Part D, interest on SMI trust funds, and transfers from the U.S. Treasury’s general fund. Benefi ciaries can choose to receive all their Medicare services through managed care plans under the Part C program, in which case payment is made on their behalf in

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216 IV. SUPPORT SYSTEMS

appropriate parts from the HI and SMI trust funds, and includes any premiums Part C enrollees may pay.

In recent years, there has been considerable discussion over the spiraling costs of the Medicare program—how much more it is costing each year; when the Medicare Trust Funds will run out of money without changes in funding; how costs can be curtailed; and, recently, whether there should even be a national health insurance program for seniors. In 1970, just 5 years after Medicare was introduced, the Medicare trustees’ report projected insolvency for the Hospital Insurance Trust Fund by 1972, and in 1997 the trustees were projecting insolvency by 2001 (Zorn, 2011). Of course, changes to Medicare since its inception have kept it from running out of money, and changes will continue to be necessary to keep it so. Keeping rapidly growing costs in check is a problem for all health care entities. Medicare’s coverage is more cost-effec- tive than private insurance plans, in part because its administrative costs are much lower. In 2011, total expenditures for Medicare were $549 billion and total income was $530 billion, with assets held in the trusts fi lling the gap. Table 14.3 provides data on Medicare’s income and expenditures, including total assets remaining in the trust funds as of the end of 2011. The Affordable Care Act extends Medicare’s solvency from 2017 to 2024 (when there will no longer be any monies remaining in the trusts

TABLE 14.3 Medicare Trust Funds: Calendar Year 2011

SMI

HI (Part A) Part B Part D Total

Assets at end of 2010 (billions) $271.9 $71.4 $0.7 $344.0

Total Income $228.9 $233.6 $67.4 $530.0

Payroll taxes 195.6 — — 195.6

Interest 12.0 3.2 0.0 15.2

Taxation of benefi ts 15.1 — — 15.1

Premiums 3.3 57.5 7.7 68.5

General revenue 0.5 170.2 52.6 223.3

Other 2.4 2.7 7.1 12.2

Total Expenditures $256.7 $225.3 $67.1 $549.1

Benefi ts 252.9 221.7 66.7 541.3

Hospital 132.7 35.1 — 167.8

Skilled nursing facility 32.9 — — 32.9

Home health care 7.3 12.4 — 19.6

Physicians’ fees — 67.6 — 67.6

Private health plans (Part C) 64.6 59.1 — 123.7

Prescription drugs — — 66.7 66.7

Other 15.4 47.5 — 62.9

Administrative expenses 3.8 3.6 0.4 7.8

Net change in assets -$27.7 $8.3 $0.3 -$19.2

Assets at end of 2011 (billions) $244.2 $79.7 $1.0 $324.9

Note: Totals do not necessarily equal the sums of rounded components.

Source: Medicare Board of Trustees (2012), p. 10.

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14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 217

to fi ll funding gaps), giving us more time to address how to keep Medicare viable for future generations.

Trying to cope with this situation usually involves proposals to cut benefi ts, boost revenues, or raise taxes. Until the passage of the Affordable Care Act in 2010, little effort had been focused on how to keep older people healthier and thereby avoid costly hospi- talizations and treatments. Now seniors can take advantage of new preventive services, such as cancer screenings and tobacco cessation programs. But much more needs to be done to maximize health and quality of life in the later years, and most such actions can lead to signifi cant cost savings, too. For example, most cases of chronic kidney disease are caused by diabetes and high blood pressure, two preventable health conditions. And yet, Medicare’s expenditures for end-stage renal disease alone, which results from a lack of prevention and early interventions for kidney disease, were $24 billion, more than $46,000 for each of the 514,642 patients in 2007 (National Health Care Quality Report, 2012). We are only beginning to scratch the surface in terms of our prevention efforts and making better use of our health care dollars for treatments that are demonstrated to be effective.

MEDICATIONS AND MANAGING PRESCRIPTION DRUGS

As important as affordable prescription drugs are for older people, the management of drugs (prescribing, giving, and taking medicines) is equally vital to their well-being. According to data collected by the Slone Epidemiology Center at Boston University, 28% of older men and women take fi ve or more prescription drugs per week, about twice the percentage of 45- to 65-year-olds who take that many (Patterns of Medication Use in the United States, 2006). When combined with the normal body changes caused by aging, tak- ing multiple medications, which is referred to as polypharmacy, can increase the chance of unwanted, and even harmful, drug reactions.

As a person ages, the way that medicines are absorbed and used can change. For example, changes in the digestive system can affect how fast medicines enter the bloodstream. Changes in body weight can infl uence the amount of medicine needed and how long it stays in the body. The circulatory system may slow down, which can affect how fast drugs get to the liver and kidneys. The liver and kidneys also may work more slowly, affecting the way a drug breaks down and is removed from the body. Because of these age-related changes, older adults are more susceptible to adverse drug reactions.

Adverse Drug Reactions

It is estimated that 30% of hospital admissions of older adults may be due to adverse drug reactions (Fick et al., 2003). The human toll in terms of morbidity, including increased depression, falls, and fractures, and mortality, as well as the economic impact of adverse drug reactions demand that more attention be paid to them.

Drug reactions can result when drugs interact with each other, with medical condi- tions, or with food or alcohol. Drugs can interact with each other, causing one of them not to work as well or even make one of them stronger than it should be. A medical condition, such as hypertension or asthma, can make certain drugs potentially harmful. Food in the digestive system can affect how a drug is absorbed, and some drugs may also affect the way nutrients are absorbed or used in the body. Mixing alcohol with some drugs may

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218 IV. SUPPORT SYSTEMS

cause sleepiness, slow reactions, or even death. Many medicines do not mix well with alcohol, and older bodies may react differently to alcohol, as well as to the mix of alcohol and medicines. It is usually not easy to persuade a person using prescription drugs to stop drinking alcohol. It is, however, one of the most important things a family member, friend, or caregiver can do.

The causes of adverse drug reactions are many. Often elderly patients go to several different physicians and pharmacies and do not tell each one about all the medications they are taking. Clinicians who are not knowledgeable about geriatric patients can prescribe medications that should generally be avoided due to their lack of effi cacy or unnecessarily high risks, given safer alternatives, including nonpharmacological therapy. To assist all health care providers, a panel of experts created a list of 66 potentially inappropriate drugs for older adults (Fick et al., 2003). Mixing prescription and other medications, including over-the-counter drugs, vitamins and miner- als, and herbal/natural supplements, can also cause adverse reactions. For older adults liv- ing in the community, the mix of prescriptions and other medications is about 50–50 (Patterns of Medication Use in the United States, 2006).

A geriatrician discusses the use of pharmaceuticals, alternative therapies, herbs, antioxidants, and vitamins in Video 10.

Medication Management

Many programs for medication management are now available throughout the country. Older adults and their loved ones can obtain information about them through their local or state offi ces on aging (locate them via www.aoa.ogv/AOARoot/AoA_Programs/ index.aspx). Medication management programs, sometimes called MTM or medication reviews, include a free discussion and review of all medications by a pharmacist or other health care professional who will check for possible interaction problems, correct dos- ages, and so forth. All over-the counter medications, as well as dietary supplements, vita- mins, minerals, and herbals should be reviewed at the same time. Those who have more than one chronic health condition should contact their Medicare Part D plan to see if it includes such a program.

The U.S. Food and Drug Administration has developed a form called My Medicine Record, which can be downloaded (at www.fda.gov/Drugs/ResourcesForYou/ ucm079489.htm), fi lled out, and shared with physicians, pharmacists, and other health care providers at all visits. My Medicine Record contains a chart to record the names of the medicines and dietary supplements that a person is taking; a page to record per- sonal and emergency contact information, as well as physician and pharmacy contact information, and more. Also helpful is having a set of questions to ask health provid- ers and pharmacists before taking medications—Table 14.4 gives a list of some good questions.

Episode 10: Geriatric Medicine

High Bandwidth:

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_

aging/success_aging_10_large/grcc_player.html

Low Bandwidth:

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_

aging/success_aging_10_small/grcc_player.html

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http://www.aoa.ogv/AOARoot/AoA_Programs/index.aspx

http://www.fda.gov/Drugs/ResourcesForYou/ucm079489.htm

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_aging/success_aging_10_large/grcc_player.html

http://raidercast.grcc.edu/flash/2011_2012/grcctv/successful_aging/success_aging_10_small/grcc_player.html

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14. MEDICAL CARE, MEDICARE, AND MEDICATIONS 219

SUGGESTED RESOURCES

Centers for Disease Control and Prevention, Healthy Aging: http://www.cdc.gov/aging/ This part of CDC’s website provides access to credible, reliable information, data, and statis-

tics on healthy aging, including health topics relevant to older adults, chronic disease man- agement, and clinical preventive services.

DailyMed: http://dailymed.nlm.nih.gov/dailymed/about.cfm This website, a public service of the National Library of Medicine, provides health infor-

mation to providers and the public with a standard, comprehensive, up-to-date, look-up and download resource of medication content and labeling as found in medication pack- age inserts for prescription and over-the-counter medications. AARP also has a website that provides a similar service, with simplifi ed descriptions of key aspects of drugs (see http:// healthtools.aarp.org/drug-directory).

Health in Aging: http://www.healthinaging.org/ Created by the American Geriatrics Society Foundation for Health in Aging (FHA), this web-

site provides consumers and caregivers with up-to-date information on health and aging. Medicare: http://www.medicare.gov/ This federal government website provides tools for signing up and managing Medicare

coverage, creating and maintaining personal health records, and information on all things related to Medicare, including how to fi nd health care professionals, facilities, and services.

NIH Senior Health: http://www.nihseniorhealth.gov A senior-friendly website from the National Institute on Aging and the National Library of

Medicine, this website has health and wellness information for older adults. Special features make it simple to use, for example, the size of the type can be made larger.

TABLE 14.4 Good Questions to Ask Health Care Providers and Pharmacists About Medications

What is this medication supposed to do?•

How and when should I take the medication and for how long?•

When will the medication begin to work, and how can I tell if it is working?•

What should I do if I miss a dose?•

What are the side effects, and what should I do if they occur?•

What is the generic form of this medication, and can I take it?•

Will I have any testing to monitor the medication’s effects?•

How should I store my medication?•

Should the medication be taken with food?•

Are there foods, drinks, other medications, or herbal supplements I should avoid?•

Am I able to drive while taking the medication?•

Source: Department of Health and Human Services. Administration on Aging. Retrieved from http://www.aoa.gov/ AoARoot/AoA_Programs/HPW/Med_Manage/index.aspx

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http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Med_Manage/index.aspx

http://www.cdc.gov/aging/

http://dailymed.nlm.nih.gov/dailymed/about.cfm

http://healthtools.aarp.org/drug-directory

http://www.healthinaging.org/

http://www.medicare.gov/

http://www.nihseniorhealth.gov

http://www.aoa.gov/AoARoot/AoA_Programs/HPW/Med_Manage/index.aspx

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1CHAPTER

221

Assisted Living/Long-Term Care

The learning outcomes of this chapter include understanding

How moving from some form of independent living to a dependent living arrangement ■ impacts the lives of older people. The array of issues and circumstances older people and their family caregivers face ■ in the fragmented system of assisted living/long-term care that exists in the United States. The burden caregiving places on families—especially female caregivers. ■ How a seemingly sexist approach to caregiving developed and persists in the United ■ States. The complexities and frustrations of fi nancing long-term care in the political climate of ■ contemporary America.

ESTHER’S NEED FOR CONGREGATE LIVING

Esther was the best cook in her family. Nieces and nephews always talked about Aunt Esther’s chocolate cakes. Her dinners were also excellent. After she turned 80 years old, she began to develop macular degeneration (the loss of central vision). Gradually she lost more and more vision due to the deterioration of the retinas in her eyes. It became hard to read even the larg- est print. Her general health was quite good, with her high blood pressure controlled through aggressive medication. Her husband, so typical of their generation, never learned to cook nor did he want to try. His health too was quite good, but he could no longer drive for a variety of physical reasons. Esther and her husband had always been very independent. They did not rely on anybody. They helped lots of people in various ways. With Esther’s limited vision, what were they to do? When they had some friends move into a congregate living facility that did not require an entry fee and rented on a month-to-month basis for $1,300 a month including

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222 IV. SUPPORT SYSTEMS

two meals a day, they saw that as an option for them, too. It was a new facility and really quite nice. Each unit had a living room, bedroom, bath, walk-in closet, and small kitchen to prepare meals they might choose to have in their own apartment. They thought they would try it. The biggest adjustment was eating with other people on a regular basis. At fi rst, this was diffi cult for Esther because she was so used to being in charge of the food preparation and the eating arrangements, but she adjusted quite well after a time. Both Esther and her husband made many friends and actually looked forward to meals as a natural time to get together with their new friends.

DIANE: FORCED TO BE A CAREGIVER?

Peter and Diane have a close-knit family. Peter’s mother, who lives 2 miles away, has been wid- owed for 10 years and managed to take care of her own home. Everything was fi ne until she fell and broke her hip.

Peter’s mother was hospitalized for a time, but being immobile and on medication made her chronic conditions worse. Her general health failed rather quickly, and Peter and Diane felt they should do something to help her until she was able to regain her strength. Peter’s sister, Jane, lives on the other side of the state and spends most of her time caring for her injured husband. So where should Peter’s mother go to recuperate? She can’t go to Jane’s, so are Diane and Peter expected to take her in?

Diane isn’t ready to become a full-time caregiver. She wants to help, but she does not want to give up her job to stay home and care for Peter’s mom. Peter and Diane need to fi nd another solution, but they don’t know where to look or whom to ask (Riekse & Holstege, 1992, pp. 158–159).

MOVING FROM INDEPENDENT LIVING

All of the housing options discussed in previous chapters, even those that involve sharing a home with others, are essentially independent living environments. This chapter looks at the types of living arrangements that involve various degrees of supportive services. Some of these facilities are chosen primarily for the benefi ts of interaction with people of similar ages and interests. Others are chosen as planned moves with continuum-of-care services built in as part of the environment, where levels of supportive care are provided as needed. Still others are chosen out of necessity when a person needs immediate assis- tance with daily living activities.

CONGREGATE/ASSISTED LIVING

Congregate/assisted living has many defi nitions and has many forms. It continues to take additional forms as the market expands because of the increase in the number of older persons in America. These living arrangements have been called homes for the aged, retirement homes, old people’s homes, sheltered housing, and others. The common factors in all of these homes are housing units that have a common dining room in which meals are served on a regular basis along with access to social and recreational services.

The goal of congregate living is to provide services in a residential setting for persons who need some form of assistance with daily living but do not require continuing medical or nursing care. They generally do not require full-time personal assistance. In the past, many of these homes for the aged were developed and operated by religious institutions and fraternal or social organizations. Most of these were, and continue to be, nonprofi t.

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15. ASSISTED LIVING/LONG-TERM CARE 223

A Dormitory for the Elderly

For older persons, the “dorm room” of the home for the aged is where they spend much of their time. It is diffi cult for many older persons, after being active and in charge of their lives, to give up some of their independence and move into congregate living situations. This is particularly true for older persons who have a perception of homes for the aged from past experiences where the settings were often old, dismal, and generally oppressive. That is one of the reasons new approaches to congregate liv- ing situations are being developed, often by entrepreneurs who cater to more affl uent older persons. They provide a sparkling physical environment with a range of enter- tainment and recreational options along with upscale services. They are designed to attract persons who are physically mobile, and want the security of a controlled, sup- portive environment.

Support for Congregate Living

Late in the 19th century, most old people had to look out for themselves only with the help of their families. For those who had no help, or no families to move in with, the alter- native was to turn to the poor farms of America. These were common across the nation’s landscape. With the beginning of Social Security in 1935, America began to look toward a different approach to providing for the needs of the elderly. But Social Security was only a beginning. It was not until a 1963 address to the Congress that President Kennedy proposed a basic concept that later became part of a national program for congregate housing. President Kennedy stated:

For the great majority of the nation’s older people, the years of retirement should be years of activity and self-reliance. A substantial minority, however, while still relatively independent, require modest assistance in one or more aspects of their daily living. Many have become frail physically and may need help in preparing meals, caring for living quarters, and sometimes limited nursing. (U.S. House of Representatives, 1963)

President Kennedy went on to recommend the enactment of housing programs that would include a variety of services. In 1970, Congress fi nally acted to provide funds for the construction of congregate housing for the elderly. In 1974, Congress authorized funds to include space for central kitchens and dining rooms. Congregate housing can be attractive to a cross-section of older people at a variety of income levels.

Assisted-Living Facilities

In addition to the many long-established congregate living institutions, a newer version of homes for the aged has sprung up in the past 15 to 20 years called assisted-living facili- ties. Services in these types of residences are supposed to be provided according to indi- vidual needs (Cox, 2005).

The goal of assisted living is to enable persons to live in a homelike environment. These facilities typically have a housekeeping service, serve at least two meals a day, pro- vide recreational programs, and have some method of 24-hour supervision. The residents typically live in individual apartment units—from small to relatively large—which often have a kitchen. But standards of care vary widely from facility to facility and from state to state. Some form of health care monitoring is usually offered.

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224 IV. SUPPORT SYSTEMS

An investigation by USA TODAY of 5,300 assisted-living facilities in 12 states, includ- ing Michigan, indicated rather widespread lapses in care services (McCoy & Hansen, 2004). Specifi cally, this investigation found that among the facilities surveyed, more than 1 in 5 had been cited by state monitors for at least one signifi cant medication error.

CONTINUING CARE RETIREMENT COMMUNITIES (CCRCs)

For those who want the assurance of being in an environment that will meet all of their needs as they continue to move through their later years regardless of the status of their mobility and health, there are CCRCs. They are also called life-care or continuum-of-care communities. They usually provide housing, personal care, supportive care, nursing care, congregate meals, and a range of social and recreational services. The key feature is that incoming residents enter into contractual agreements to pay entrance fees and monthly fees that will provide for their care for the rest of their lives. There are more than 1,800 CCRCs in the United States, most of them affi liated with nonprofi t organizations (Government Accountability Offi ce [GAO], 2010).

The continuum of on-site services that are needed by older persons as their status changes means that the residents are not at risk for being evicted if they become impaired or their impairments become worse. A study of persons who have moved into these types of facilities found that the main reasons for such moves are planning ahead for possible changing physical and mental needs, freedom from maintaining their own homes, and a wish not to be a burden on their loved ones (Krout, Moen, Holmes, Oggins, & Bowen, 2002).

Costs of CCRCs

In general, these facilities are geared for the middle and upper income older population— with some exceptions. The entrance fees for CCRCs generally range from $20,000 to more than $500,000, with monthly fees varying from $600 to more than $3,000, depending on regions of the nation, type of buildings, size of individual residences, and levels of ser- vices provided, which typically relate to the amount of health care needed (Cox, 2005). An exception to the typical middle and upper income tone to CCRCs would be those oper- ated by religious and/or charitable organizations, such as the Holland Home of Grand Rapids, Michigan. Although accommodating upper income older persons with rather opulent suites and apartments, in 2009 it provided $5,000,000 of fi nancial assistance to 40% of its 3,100 residents. Many of those persons simply outlived their resources. It also offered a Home Buy-Out Program, which actually bought the homes of would-be residents, so they could afford to pay entry fees. This is a strategy to address the large downturn in the housing market during the Great Recession of 2008 to 2009 (Claus, 2010).

Life in CCRCs

Many of the newer CCRCs have private apartments in duplex or townhouse arrange- ments, individual apartments in larger buildings, rooms in a “manor” type of building, supportive care rooms, and nursing facilities all on the same campus. As an older per- son’s needs change, the resident can move within the same retirement community to the next level of assisted-living housing unit, including nursing home care. All of this is covered by a life-care agreement.

CCRCs can be ideal for older people who can afford the entrance and monthly fees, and who can adapt to living in an environment that is somewhat institutional

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15. ASSISTED LIVING/LONG-TERM CARE 225

and controlled. This approach can be a solution to guarantee long-term care. However, because of the relatively large fees involved, this approach does not address the public policy issues of long-term care for the majority of older Americans.

Regulations of CCRCs

Although there are no federal regulations for CCRCs, 38 states do regulate them. And standards and accreditation are provided by the Commission on Accreditation of Rehabilitation Facilities (CARF). But there is no requirement that facilities participate in such an accreditation process. As a result, it is important that older persons who contem- plate moving into a CCRC understand the services provided, what services are available to meet current and future needs, the costs and the types of contracts offered, and the pos- sible pitfalls in signing a contract for this type of facility. A report on CCRCs conducted by the GAO (2010) has pointed out that

many older Americans sell their homes, which are often their primary asset, to pay the required fees, and, as a result, their ability to support themselves in the long-run is inextricably tied to the long-term viability of their CCRC. Further, many CCRCs may be fi nancially vulnerable during periods of economic decline—such as the recent downturn—that can result in tight real estate and credit markets. (p. 1)

Things to Look for in Choosing a CCRC

Much of the decision in choosing a facility comes down to whether a prospective resident feels “at home” after a period of adjustment. The place chosen will become “home” and all that means to the life of an older person. Although it may appear that these living arrangements (CCRCs) are primarily for the well-to-do elderly, some contracts can be purchased for reasonable amounts of money considering the number of older people who own their homes free and clear of mortgages.

BOARD-AND-CARE HOMES

These types of homes generally focus on serving persons with lower incomes than those who reside in assisted-living facilities, which are often owned by large corporations and specifi cally target upper middle-class people. The residents of board-and-care homes typically lack other options if they wish to remain in the community.

It is diffi cult to determine exactly how many older persons live in board-and-care homes, as many of these facilities are not licensed, and their defi nitions differ among states. It has been estimated that the need for this type of facility will increase dramati- cally due to the projected large increase in older persons with functional limitations (dou- bling from 1990 to 2020).

The Operators of Board-and-Care Homes

Although they vary in size, the majority of board-and-care facilities are for-profi t “mom and pop” operations. Some of the “moms and pops” are operated by individuals—a “mom” or a “pop.” This type of manager usually plays an important role in the facil- ity and in the lives of the residents. In fact, this person (or couple) is typically the key to the overall well-being of the residents. Whether the operators need to have any special Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

226 IV. SUPPORT SYSTEMS

training to operate a board-and-care home varies from state to state. Some operators hire outside help to manage the home. In these types of arrangements, there is potential for abuse and neglect of the residents.

Board-and-care homes, according to experts on aging, can provide a real service to many impaired elderly persons as an alternative to being institutionalized (Cox, 2005). The smaller settings of these facilities, along with more informality, can meet the needs of many older people if they are run properly.

LONG-TERM CARE FACILITIES

In addition to the various types of congregate facilities outlined previously, two types of living arrangements available for many frail, dependent, and chronically ill older persons are nursing homes/nursing facilities and dependent home care. Home care patients are cared for by friends or family members—usually wives or adult children (most often daughters or daughters-in-law)—in someone’s home.

Nursing Homes/Nursing Facilities

One of the most diffi cult decisions to make is whether to put one’s parent or loved one in a nursing facility. Many older people and their families perceive nursing homes as warehouses where old people just wait to die. There is a widespread perception of nursing homes as places where abuse and neglect can occur. The 1960s and early 1970s, a period of rapid growth of nursing homes, was also a time of well-publicized nurs- ing home scandals (Vladeck, 1980). Despite nursing home reform legislation (Omnibus Budget Reconciliation Act, 1987), there is reason for continued concern about the care and safety of nursing home residents. Although the prevalence of serious defi ciencies seems to have declined signifi cantly (from 29% to 16%), in its most recent report on nursing homes, the GAO (2005) still found “a small but unacceptable proportion of nursing homes repeatedly caused actual harm to residents, such as worsening pressure sores or untreated weight loss, or placed residents at risk of death or serous injury” (p. 2). Tremendous variability exists, with 10 states reporting less than 10% of their nursing homes with serious defi ciencies, but 15 states reporting more than 20% of homes with such problems.

Institutions classifi ed as skilled nursing homes care for some of the oldest and frailest members of society. While most people aged 65 and older live in households, the probability of living in a nursing home increases with age; less than 1.1% for 65- to 74-year-olds, 3.5% for 75- to 84-year-olds, and 13.2% for those age 85 and older (A Profi le of Older Americans: 2011).

Who Lives in Nursing Homes?

It is important to note that all the percentages of older people living in nursing facilities have declined since 1990. This decline may be due to the improved health of older people, or the substitution of other kinds of caretaking, such as assisted living, in-home health care, and hospice organizations (65+ in the United States, 2005).

The majority of older people residing in nursing homes are women. In addition, male nursing home residents tend to be younger than female residents. This differ- ence is partly due to the longer life expectancies of women. Men also have higher rates of serious and permanent injury rates at relatively younger ages, which may lead to permanent nursing home stays and would slightly lower the average age of male

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15. ASSISTED LIVING/LONG-TERM CARE 227

residents. After entering nursing homes in old age, women tend to stay longer, further extending the average age of female nursing home residents (65+ in the United States, 2005).

Regional differences exist in the percentage of the older population living in nurs- ing homes. The proportion of the population aged 65 and older residing in a nursing home ranges from a low of 2.7% in the West to a high of 5.5 in the Midwest (65+ in the United States, 2005). The smaller proportions of the older population who reside in nurs- ing homes in the South and West may be partly due to migration. Healthy members of the older population may move from the Northeast and the Midwest to retirement areas in warmer climates, such as the South and West. This leaves behind a frail older popula- tion that is more likely to enter nursing homes. In addition, when these older people who move to the South and West experience illness or become frail, they may move back to their original regions to be closer to family members who can provide caregiving or over- sight on health issues and decisions.

Current Trends in Nursing Home Living

The reasons the nursing home population has become smaller, older, and frailer are varied, but might in part be attributed to two trends. First, older people now have more options for long-term care, enabling more people to live outside a nursing home in an assisted, but nonmedical, environment. Second, older people with severe dis- abilities may not be able to live in alternative care settings (such as assisted living), so larger proportions of this group must rely on more traditional and intensive nursing home care.

Long-term care is now frequently provided in a variety of settings that, apart from nursing homes, are diffi cult to defi ne. Nursing homes that receive Medicare and Medicaid funding are regulated by the federal government and must meet defi ned standards, which include developing a comprehensive care plan for each resident, maintaining the dignity and respect of each resident, and ensuring that residents have the right to choose activities, schedules, and health care. Assisted-living facilities and residential care, on the other hand, are overseen by state and local jurisdictions with differing standards (Stone, Bryant, & Barbarotta, 2009). Traditional nursing homes continue to be a component of caring for the oldest and frailest members of society, but other creative approaches to formal and informal care situations will likely continue to develop.

In-Home Long-Term Care

Long-term care in one’s own home is mostly provided by family members, primarily women (wives, daughters, and daughters-in-law). In-home care is provided weekly, daily, or around-the-clock, depending on the condition and needs of each disabled older person.

An array of services is available in many communities to assist disabled older per- sons as well as caregivers in carrying out their tasks. No government program provides for 24-hour, in-home care. Paying for specifi c in-home services can be tricky. Some are available at little or no cost depending on the service, how it is accessed, and whether the recipient qualifi es through programs of the Older Americans Act, Medicare, Medicaid, or state social service departments. Usually local Area Agencies on Aging can assist in fi nd- ing services that meet the needs of specifi c disabled older persons. These services include care management, home health services, homemaker/home care services, friendly visitor programs, and telephone reassurance programs.Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

228 IV. SUPPORT SYSTEMS

Additional Services Outside the Home

Some additional community-based services are offered to dependent older persons and their caregivers. These include adult day care, respite care, congregate meals, transporta- tion, home delivered meals, and home repair. Some of these services may be funded by the Older Americans Act (OAA), and available through agencies accessible through state government departments that serve the elderly. More information on OAA-funded ser- vices is presented in Chapter 13.

In-Home Care Trends

Increasingly, older people and their caregivers are looking for options to formal institu- tional care. These options may include family or home-based caregiving, community- based paid care, self-care using assistive devices, or some combination of all of these.

Home- and community-based care are the most common care arrangements for older Americans. Among community-dwelling older people with long-term care needs, over 80% depend on unpaid help (Kaye, Harrington, & LaPlante, 2010). For older people who remain in the community, studies show an increase in paid care, especially at the higher rates of disability, when informal care (from friends or family) is supplemented by formal care (Langa, Chernew, Kabeto, & Katz, 2001).

The use of assistive devices, either alone or in combination with other care arrange- ments, is becoming more common among older people (Freedman, Agree, Martin, & Cornman, 2006). The use of assistive devices improves functioning, enhances inde- pendence, decreases caregiver responsibilities, and reduces the hours of personal care needed.

While there is real need and value for nursing homes for older persons with severe impairments, the overall goal of in-home care is the diversion of people from nursing homes when they can be served at home and in the commu- nity (Scripps Gerontology Center, 2008). This goal builds upon what most older people want as they go through the aging pro- cess—to stay at home as long as possible. To hear older adults talk about the importance to them of aging in place, watch Video 1.

Reasons to Choose In-Home Long-Term Care

Many reasons are given by older persons and their families for choosing long-term care in a home-based setting. According to experts, these include:

Familiarity

Most people are familiar with the feelings of independence and security they have in the familiar surroundings of a home (Salamon & Rosenthal, 2004). They just simply like to be in a setting they have lived in throughout their lives—a single-family home, whether it is their own old home or the home of a relative. They feel that the warmth of caregiving

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15. ASSISTED LIVING/LONG-TERM CARE 229

from loved ones is far superior to what they might receive from strangers. But it is pointed out that the wish to stay in familiar surroundings may overshadow a better choice of care. This is particularly true for the family caregivers, usually daughters or daughters-in-law, who have their lives severely changed—usually in negative ways.

Fear of Institutions

People living in many forms of confi nement in a range of institutions—prisons, mental hospitals, drug rehabilitation centers, and nursing homes—are often viewed as need- ing to be kept away from healthy society. In addition, many people have read about the really bad conditions in some nursing facilities—many of which are based on state inves- tigations. This contributes to the feeling by many that nursing homes are “hellholes” or “snake pits.” Also, many in the general public believe that nursing homes do not provide the personal care patients need (Salamon & Rosenthal, 2004).

Guilt

Many persons feel a sense—sometimes an overwhelming sense—of guilt if they do not personally assume the primary care of an aging parent. They simply feel the need to care for aging parents because the parents cared for them when they were young. They think it is their family obligation to care for aging loved ones (Riekse & Holstege, 1996).

Costs

Many—too many—simply cannot afford nursing home care (Gleckman, 2008). There is no federal entitlement for such long-term care outside of Medicaid, which is a fed- eral-state program designed for the poor or those persons who are forced to become poor before they can qualify for benefi ts under this program. Many middle-class older persons, in order to receive assistance through Medicaid to pay for long-term care, become impoverished for the fi rst time in their lives—a humiliating condition for proud persons who worked hard all their lives while supporting schools, cities, towns, states, and the U.S. government through their taxes, as well as serving all sorts of community support systems, and, for many, serving in the military (Riekse & Holstege, 1996).

ISSUES IN LONG-TERM CARE

There are a number of specifi c issues/decisions that relate to long-term care in the United States. These include, but are not limited to:

The Context of Long-Term Care

Defi ning the need for what is commonly called long-term care is linked to what is referred to as functional ability, which is also tied to the term frail elderly. Back in the 1970s, the Federal Council on Aging provided one of the fi rst defi nitions of the term frail elderly. Frail elderly persons are “usually, but not always, over the age of 75, who because of the accumulation of various continuing problems, often require one or sev- eral supportive services in order to cope with daily life” (Cox, 2005, pp. 18–19). Frailty has also been defi ned as the “loss of a social support system to the extent that the person is unable to maintain a household or social contacts without continuing assis- tance” (Cox, 2005, p. 19).

All of the defi nitions relate to something called functional status, which is generally used to measure the need for long-term care services. Functional status is typically based on an older person’s ability to complete what are called activities of daily living (ADLs). Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

230 IV. SUPPORT SYSTEMS

These are the things persons do to maintain independent living including bathing, dress- ing, toileting, transferring between bed and chair, continence (controlling bladder and bowels), and eating.

In addition to measuring ADLs, there are also measurements of something called instrumental activities of daily living (IADLs). These include tasks people commonly do in the community as part of normal living. They include using a telephone or cell phone, shopping, housekeeping, doing laundry, taking medicines, transporting themselves (by car, bus, cab, etc.), and managing fi nances.

Caregiving: A Family Affair

In her book entitled Helping Yourself Help Others, A Book for Caregivers, Rosalynn Carter (1994), Former First Lady of the United States, quoted a colleague’s perspective on care- giving, saying,

There are only four kinds of people in the world: those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers. (p. 3)

In the United States, long-term caregiving is mostly a family affair. And in the family, it is the women—the spouses of those with disabilities and especially the daughters—who assume most of the burden of caregiving, according to Elaine Brody (2004). More than ever before, daughters (and daughters-in-law) are providing this care, while they prob- ably have careers of their own in the workplace; may have debts from loans for their own education; and typically have families of their own with all that implies. They are facing competing demands from husbands, children, parents, and work, which often put them in the middle emotionally between elderly parents and husbands and chil- dren. The negative results of these tasks and confl icts, according to a wide range of research, typically include poor mental and physical health, threats to family well-being, problems and situations with paid work as well as other aspects of their lives, including their social lives.

Based on projections of people currently alive, as well as projected life spans, the number of older people is expected to increase to 70 million, or 20% of the total U.S. population by 2030. As a result, the number of elderly persons that may need caregiving is staggering. This is particularly evident if one realizes that the fastest growing sector of older people is the oldest-old (85 years and older) who generally need the most amount of caregiving. It is projected that by 2050, the oldest- old will number some 19 million. With care for these elders mostly pro- vided by families—par- ticularly daughters and daughters-in-law as they outnumber caregiving by sons 3 to 1 (4 to 1 when the parents are extremely disabled)—the burdens on female caregivers will increase substantially (Brody, 2004). To hear from caregivers about issues they have faced and how they have dealt with them, watch Video 3.

Episode 3: Caregiving Part 1

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15. ASSISTED LIVING/LONG-TERM CARE 231

Passages in Women’s Lives

Gail Sheehy, who has written extensively on the various passages in people’s lives, has stated that many years ago in her earlier writings on passages in life, she thought that the age of 50 would be the gateway to the most liberating phase in a woman’s life (Sheehy, 2010a). She thought that after age 50 women could climb mountains, rediscover romance, pursue a new career, and so forth. Now, with so many women having older and older parents, Sheehy has discovered a second round of caregiving (the fi rst raising children) “that has become a predictable crisis for women in their midlife” (Sheehy, 2010a, p. 71). She points out that nearly 50 million Americans are caring for an adult who earlier had been independent.

Sheehy notes that men are caregivers, too (about one third of family caregivers), but they usually do so from a distance or it is administrative in nature. It is women who do the real, hands-on care. The average caregiver is 48 years old, has at least one child at home, and has a paying job. And, according to her data, the average caregiving role lasts about 5 years (Sheehy, 2010a).

Negative Results of Caregiving

Numerous recent studies have shown that long-term caregivers are at a high risk for sleep deprivation, immune defi ciency, depression, anxiety, loss of concentration, and even pre- mature death (Sheehy, 2010a). Dr. Esther Sternberg, a stress researcher, puts caregivers at the same risk for burnout as nurses, teachers, and air traffi c controllers. When caregiver burnout occurs, typically the only option is to put the dependent family member in a nursing facility, which is usually everyone’s last choice, the most expensive, and almost sure to promote guilt in the caregiver (Sheehy, 2010a). See additional information on care- giving in the Practical Application at the end of Part IV in this textbook.

Historical Role for Women

Women’s free labor in family caregiving has been seen by some conservatives as a means to reduce the cost of care that is fi nanced publicly. It has also been interpreted as a way to maintain the patriarchal family and women’s traditional role in it (Rosenbury, 2007). Estes and Swan (1993) have pointed out that in the patriarchal family, the basic role of women is caregiving, and their status in the family is one of dependency. They went on to argue that because so much of women’s work is not visible in terms of pay and ben- efi ts, American social policy continues to refl ect the idea of women as dependents living in a stereotypical nuclear family. In this approach, women primarily fi ll domestic and reproductive roles with participation in the workforce a secondary consideration. The enormous amount of work women perform as caregivers and the sacrifi ces they make are often unrecognized because work within the family is seen as free labor, if it is recognized as labor at all.

Betty Friedan’s “The Feminine Mystique” and Today’s Caregivers

Writing in The Nation magazine, Ruth Rosen described how housewives in the 1950s faced the realities of unhappy and unfulfi lled lives by saying, “that’s life,” whatever the trou- bling circumstance might be. Betty Friedan’s bestseller, The Feminine Mystique, exposed “the problem that has no name” and the belief that a woman should fi nd identity and fulfi llment exclusively through her family (Rosen, 2007).

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232 IV. SUPPORT SYSTEMS

Rosen pointed out that it took the women’s movement to identify and name hidden experiences many women faced including domestic violence, sexual harassment, eco- nomic discrimination, and date rape. The women’s movement turned these experiences into public problems that were then debated, addressed by new policies and laws, or changed by new social customs. Rosen went on to point out that although much atten- tion has been devoted to work/family problems, the nation has not named the burdens that currently affect so many women—the care crisis. For the most part, society has done little to restructure the workplace or family life. “Today, the care crisis has replaced the feminine mystique as women’s ‘problem that has no name’ ” (Rosen, 2007, p. 11). Rosen goes on to say that the care crisis is a problem of national importance.

Rosen contends that the use of the term family values by the political right (“conserva- tives”) in the United States is cynical. She points out that the obstacles to solving the care crisis are “formidable, given that government and business—as well as many men—have found it profi table and convenient for women to shoulder the burden of housework and caregiving” (Rosen, 2007, p. 11). The health care reform bill enacted by the Obama admin- istration in 2010 has what could be described as an opening for long-term care support— the Community Living Assistance Services and Supports (CLASS) Act. Unfortunately, this provision of the 2010 health care reform bill has not been implemented.

“The care crisis exposes how much of the feminist agenda or gender equality remains woefully unfi nished,” according to Rosen (2007, p. 13). America’s family policies are quite far behind those in other parts of the world. Of 173 countries surveyed by Harvard and McGill universities, 168 have paid maternal leave, but not the United States (Rosen, 2007).

DEALING WITH TRANSFER TRAUMA

When a caregiver becomes burnt out, or when the patient can no longer be cared for in a community setting, placement in some form of nursing facility may be needed. Being placed in a nursing facility can be the most diffi cult change one can make in a lifetime. This has been called “transfer trauma.” It has been thought to even cause death. However, more recent reviews of the relocation of elderly persons have suggested that this is not as serious a problem as has been previously indicated. This is especially true if the person being relocated is involved in preparations for the transfer (Salamon & Rosenthal, 2004).

Questions to Ask and What to Look for in Choosing a Nursing Facility

In choosing a nursing facility, a range of questions should be addressed including:

Is the facility licensed? ■ Is the home eligible for Medicare and Medicaid reimbursement? ■ Does the home have Medicaid residents? ■ What are the basic costs of the facility? ■ Does the home make extra charges for special diets or feeding a patient? ■ Are there special charges for walkers, crutches, or canes? ■ Are bills itemized? ■ What about physician services? ■ What are the visiting policies? ■ What are the living arrangements? ■ What is the food like? ■ Are private physicians allowed? ■

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15. ASSISTED LIVING/LONG-TERM CARE 233

Who provides eye care, dental care, and mental health care? ■ Are rehabilitation services available? ■ Are clergy encouraged to visit? ■ What is the ratio of staff to patient? ■ What are the rules concerning personal possessions, including some personal ■ furniture? Is the location convenient? ■ What happens to residents when they become ill? ■ Does the staff try to get to know the resident? ■ Does the home encourage the participation of a resident council? ■ Is there a way to effectively address the questions and complaints of residents ■ and relatives?

Being a Caregiver for Someone in a Nursing Home

Even after a loved one is in a nursing home, an adult child or friend can still continue to be a caregiver. Relatives and friends who are responsible for elderly persons can have impor- tant roles and functions in the care of their institutionalized relatives and friends. There are some positive steps these people can take. These include: visiting, monitoring care, partici- pating in decision-making on behalf of the patient, acquainting the staff with the patient, knowing the rights of nursing home patients, encouraging the patient to participate in resident councils, and participating in family councils (Riekse & Holstege, 1996).

PAYING FOR LONG-TERM CARE

Paying for long-term care is one of the greatest fi nancial threats to older Americans. As a result, some politicians and public policy experts have called for relief for family caregiv- ers in the form of fi nancial support for long-term care. This is in part due to the reality that according to Georgetown University’s Long-Term Care Financing Project, about two thirds of persons who turned age 65 in 2005 will require some form of assistance for an average of 3 years (Komisar & Thompson, 2007).

Almost half of long-term care is paid for by Medicaid—a federal-state program that offers relatively wide coverage for people who are poor. About 20% of long-term care costs are paid for by the Medicare program, the universal health care program available to all U.S. citizens age 65 and older. But Medicare long-term care benefi ts are very lim- ited, focusing on rehabilitative, short-term services. Almost all of the rest of long-term care is paid for “out of pocket” (meaning self-paid) or with private insurance (Komisar & Thompson, 2007). So far, the demand for private long-term care insurance is quite limited due to its high cost, complexity of policies, and the hesitation of younger people to buy such policies for their old age (Brown & Finkelstein, 2008).

Additional information on the importance of careful planning when shopping for long-term care options is included in the Practical Application at the end of Part IV in this textbook.

Proposed Changes to Funding Long-Term Care

Three approaches have been proposed to fund long-term care: (a) increase the use of pri- vate long-term care insurance by providing tax subsidies and other incentives; (b) develop a new social insurance program based on the same principle as Social Security and Co py ri gh t @ 20 14 . Sp ri ng er P ub li sh in g Co mp an y.

234 IV. SUPPORT SYSTEMS

Medicare where everybody pays a modest percentage of payroll tax (1.7% in Germany) or a new value-added tax (VAT), or a modest increase in the income tax (about 1%) for such a program; or (c) blend private and public insurance, creating a hybrid public-pri- vate system that would require persons to buy private long-term care insurance through a government program (Gleckman, 2008).

The CLASS Program: A New Paradigm of Paying for Long-Term Care

Since these wide-ranging proposals were offered in 2008, a signifi cant development occurred on the national level—the passage in 2010 of the Patient Protection and Affordable Care Act under the leadership of President Obama. Although the main objec- tives of this legislation were the fi nancial protection of all Americans and the extension of health insurance coverage to the uninsured, a key component, often never mentioned, was the inclusion of the CLASS Act. According to Lisa Shugarman in an article in Public Policy & Aging Report (2010), the CLASS Act “fundamentally reframes the concept of long- term care from one of poverty, sickness, and loneliness to one of choice, community and personal responsibility in the face of functional impairment” (p. 3).

In describing this new legislation, Kathryn Roberts (2010) stated that the Act pro- vided Americans with “the possibility to change the paradigm of how we provide pay for long-term care services in major ways” (p. 36). She went on to point out that CLASS would give Americans a long-term care insurance option, which is particularly important for those who have none and are not able to afford or qualify for private insurance. It also would enable more older people to remain in their own homes—where most want to stay—when they experience disabilities and long-term illnesses. It also would keep Medicaid in place for those persons who could not get out of poverty. Unfortunately, in part due to the projected costs of implementing the components of the CLASS Act, it has been shelved, at least for now.

SUGGESTED RESOURCES

The Family Caregiver Alliance: http://www.caregiver.org/caregiver/jsp/home.jsp The Alliance, a national community-based nonprofi t organization, addresses the needs of

families and friends providing long-term care at home. The website is full of information and publications for caregivers, including a care navigator and technical assistance center.

LeadingAge: http://www.leadingage.org/data.aspx Formerly The American Association of Homes and Services for the Aging (AAHSA),

LeadingAge includes 6,000 not-for-profi t organizations in the United States, as well as state and business partners and a broad global network of aging services organizations that reach over 30 countries. The website provides information and links to services, many focused on housing.

National Association for Home Care: www.nahc.org/ This association connects the interests of care organizations, hospice organizations, medical

care agencies, and in-home care aides. Resources offered on their website include an agency locator for assisted living facilities, legal advocacy for the elderly, and information on indi- viduals’ rights in assisted living homes.

National Association of Professional Geriatric Care Managers: www.caremanager.org/ NAPGCM is a collaborative association connecting individuals with care managers who are

registered though the association. Geriatric care managers provide assessment and support, referrals, and overall care for individuals and families. The website features an easy to use search for care managers in different regions.

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http://www.leadingage.org/data.aspx

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http://www.caremanager.org/

1Practical Application

235

Support Systems

Michael A. Faber

INTRODUCTION

The four chapters in this section explore a wide array of issues related to the primary, for- mal, and informal (family, friends, caregiving, religion, spirituality, and support groups) support systems of older people; medical care including Medicare and prescription drugs; and long-term care. This section focuses on critical real life issues related to caregiving including understanding and caring for the caregiver; role reversal; dealing with resis- tance, manipulation, and feelings of guilt and anger; and planning for long-term care.

Caregiving: The Ostrich Effect

This author has had the privilege to work with hundreds of family caregivers over the years. Unfortunately, one disturbing fact that I have encountered time and time again is that family caregivers often fail to plan for the inevitable and wait until they are in crisis to do anything. Thus, the above title, “the ostrich effect,” is based on the fact that family members often bury their heads in the sand and do nothing until in crisis. The problem with this frequent reality is that it is diffi cult, if not impossible, to make good decisions when in crisis, not to mention the fact that one’s options may be limited in time of crisis. Therefore, the old adage, “if you fail to plan, then you plan to fail” is often true.

How might this knowledge impact the work of a gerontologist? The obvious answer to this question is the need to educate and encourage family caregivers to recognize what the future may hold for their loved one and help them to plan for the anticipated needs and issues of those they care for. Also, for those planning to work with older persons, it is important to realize that working in this fi eld often requires one to work directly or indirectly with family caregivers. To have the greatest impact in the life of an older person may require addressing the needs and issues of the entire family system.

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236 IV. SUPPORT SYSTEMS

Caring for the Caregiver

It is very important for a caregiver of an older person to not only take good care of her or his older loved one, but also to take good care of herself or himself. Family caregivers often sacrifi ce their own work, relationships, recreation, and sleep in an effort to meet the needs of their care recipients. Family caregivers also tend to feel the need to do it all by themselves, often not taking advantage of the formal and informal supports available to them. It is these types of behaviors that put family caregivers at high risk for burnout. In these cases, the old adage, “you can’t give what you don’t have” truly applies. The good news is that professionals working with family caregivers can help them to avoid burn- out by encouraging them to:

Educate themselves about their loved one’s condition; ■ Take time off to restore themselves by taking breaks from caregiving; ■ Ask others for help and join a caregiver support group; ■ Understand and accept their feelings as normal and deal with any feelings of ■ guilt they might be experiencing; Maintain meaningful relationships with family and friends; ■ Take care of themselves physically, emotionally, and spiritually; ■ Adjust their priorities and be realistic in their expectations and commitments; ■ Explore available community resources and seek appropriate advice from pro- ■ fessionals such as attorneys, fi nancial planners, medical and mental health spe- cialists, clergy, etc. Plan ahead for and utilize possible needed services, such as adult day care, ■ respite, and other long-term care options; Celebrate even small successes, and fi nd ways to reward themselves; and ■ Recognize that no one is perfect, remain fl exible, and use humor wherever ■ possible.

Role Reversal and the Sandwich Generation

Many adult children, as well as their aging parents, fi nd the role reversal which occurs as parents become more dependent upon their children, a very diffi cult adjustment. Not only do the adult children provide parent care, but also often they are “sandwiched” between the added responsibilities of a marriage, teenage children still at home, fi nancial obligations, and careers. The pressures faced by individuals in the sandwich generation are often unbearable, yet surprisingly, research indicates that adult children overwhelmingly do contribute to their parents’ care in old age.

Dealing With Resistance

At times, an older adult may be in denial that a problem exists, and therefore may be resistant to accepting or receiving needed assistance. Resistance might also be the result of fear, anxiety, signifi cant amounts of change, or a sense of loss of control. Whatever the reason, resistance can be very diffi cult and frustrating for family and professional care- givers to deal with. In situations of resistance, it is important for all involved to remember that the resistant older adult

May be reacting to underlying feelings (fear, anxiety, loss of control, etc.) and in ■ need of emotional support and adjustment assistance; Has been making his or her own decisions, good or bad, for an entire lifetime; ■Co

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IV. PRACTICAL APPLICATION: SUPPORT SYSTEMS 237

Has the right as long as he or she remains mentally competent (able to fully ■ understand and accept the consequences of his or her own decisions) to continue to make his or her own decisions without interference, even if others disagree with those decisions, and fear for his or her safety; and Probably won’t be in denial forever. Often mentally competent older adults, ■ at some point, will begin to recognize their limitations and accept assistance. Therefore, it is important for family members involved in their care to be patient with, loving toward, and available to resistant older adults, always continuing to gently encourage them to accept needed help.

However, the previous list does not apply to situations where the older adult is no longer mentally competent. In these situations, professionals should assist families in acting to protect an older loved one from harm. Professionals can assist family caregiv- ers to keep the resistant older adult safe by making the following recommendations:

Take control, don’t offer an option, just move into the situation, and do what ■ needs to be done. This will sometimes be successful, but other times may lead to further confl ict and diffi culties. Contact Adult Protective Services through a county’s Department of Human ■ Services. This is a governmental agency mandated by law to protect vulnerable adults in danger of abuse, neglect (including “self” neglect), and exploitation. This agency may be able to mobilize community resources into the home or help the family build a case for a guardianship. Seek legal counsel and petition the probate court for guardianship. If granted by ■ the court, the person named as guardian is given the right to make decisions on behalf of the older adult.

To Drive or Not to Drive . . . That Is the Question

A common situation occurs when an older adult is resistant to giving up driving. Determining the point at which an older adult should no longer drive is not always easy or clear-cut. However, this is a diffi cult and serious decision, which needs to be made on a case-by-case basis through careful assessment of a person’s driving skills, coordination, and judgment.

Dealing With the Resistant Older Adult Who Should No Longer Drive

Once a determination has been made that an older adult should no longer drive, the fol- lowing techniques may be used to deal with the resistance that may occur:

Strongly encourage the person not to drive. ■ Arrange for someone to drive the person to his or her destinations. ■ Involve his or her physician in the decision to give up driving. A physician ■ can require a formal assessment of the individual’s ability to continue driving (through referral to a driver evaluation program, or special testing available through the Secretary of State offi ce (in some states, such as Michigan, anyone questioning another’s driving skills can confi dentially complete a “Request for Reexamination” form at the Secretary of State offi ce, which will require the indi- vidual to go to the Secretary of State offi ce for special testing).

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238 IV. SUPPORT SYSTEMS

Ask a respected authority fi gure (i.e., pastor, lawyer, friend) or family member to ■ reinforce the message about the need to give up driving. Find ways to distract the individual from driving (e.g., “I’d like to take you for a ■ drive in my new car.”; “Why don’t I drive today, since the route is familiar to me and new to you.” etc.). Hide and/or control access to the car keys. ■ Disable the car (i.e., remove the distributor cap, or possibly have your mechanic ■ install a hidden “kill switch”). Remove or sell the car. ■

Understanding Manipulation and Feelings of Guilt and Anger

Many individuals struggle with feelings of frustration, anger, and guilt while caring for an elderly loved one. Some adult children feel as though their parents are using guilt and manipulation to “push their buttons” in order to get a desired response. Others may feel angry or cheated by the fact that their parents have become old and frail. Still others may feel guilty for viewing their parents’ care needs as an unwelcome burden in their lives. This, in turn, may result in not only feelings of guilt, but also anger and frustration.

There is no question that caring for an older parent or loved one can evoke a number of feelings and emotions. It is important to remind family caregivers that it is not wrong to have these feelings as long as they do not act upon them inappropriately. Professionals should assist family caregivers by providing them with education and access to available resources, as well as help them to maintain positive attitudes and keep themselves physi- cally and emotionally healthy.

Caregiver Resource

An excellent online learning resource for both family and professional caregivers (which this author helped to develop and maintain) is the Caregiver Resource Network website (at www.caregiverresource.net). This educational website provides a wide range of care- giver information and resources designed for both family and professional caregivers including:

Caregiver stories, ■ Educational articles and fact sheets, ■ A self-check survey on personal well-being designed to identify caregiver stress, ■ A variety of professional tools including a number of caregiver curriculums that ■ can be used for self-study or group presentation, and Free downloadable audio radio programs on topics of interest to both family and ■ professional caregivers.

Planning for Long-Term Care

When it comes to paying for long-term care, for many this will be the single greatest fi nancial investment in their lives. This being the case, why is it that so many individu- als do not carefully plan and shop for needed long-term care? I like to compare this to someone going to shop for a new luxury vehicle and buying the fi rst one that they are shown by the dealer, without ever taking a test drive, kicking the tires, or doing extensive comparisons of the costs and features of different models and brands. This just would not happen, so why does it happen with the purchase of the much more expensive long-term

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IV. PRACTICAL APPLICATION: SUPPORT SYSTEMS 239

care placement and services? I believe that the answer to this question relates directly to the fact that family caregivers and many older adults themselves fail to plan ahead and be proactive. Instead, they are reactive when in crisis. This probably relates to the fact that it is diffi cult for individuals to ever think that they themselves or someone they love might grow old, frail, and dependent upon others for care. Therefore, the role of the professional working in this fi eld is to support older persons and their family members in times of crisis, as well as work proactively to educate and encourage advanced planning for the successful aging of all.

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