Week 2 Discussion: Personal Encounter with Dementia

Week 2 Overview

Introduction

Hello again. Before any of you start worrying if forgetting where you left your keys or not turning on the alarm clock signals pending dementia, remember this: Normal aging does not involve large declines in intelligence, memory or learning abilities. Mild impairments in memory for an older person can represent a mild form of memory dysfunction known as benign senescent forgetfulness. Marked deterioration in cognitive functioning comes up with dementia.

Another thought: Alzheimer's disease is moving up in the list of leading causes of death for older persons in the U.S. partially because innovations in prevention, management and cure for other major diseases of older age have lead to large decreases in their numbers. This week we look at history of dementia from a social science perspective in the Innes text beginning on p. 2 (available in the textbook eReserves). Over the course of the semester I will be adding materials from other sources to supplement the text. Have a great week.

Objectives

Upon completion of the week 2, students will learn:

· Recognition, respect and trust should be preserved for people with dementia and aspects of self remain even for those who are labeled as having "severe" or "advanced dementia".

· The theoretical background of knowledge about dementia and its implications for care practice, policy and research are diverse.

· Interpreting dementia symptoms as a "disease" is a way to accept conduct which challenges the social order of "normal" behavior. If dementia is understood as a chronic illness such behaviors can be defined as medical problems.

· Addressing dementia from the basis of neurological impairment alone is a sorely inadequate approach. Advocating the use of sensitive care-giving using individualized approaches to care can contribute to maintaining the person hood and enhance the lives of dementia sufferers.

Students will also meet participation requirements for the discussion board. 1) Answer weekly question appropriately by relating your response to your weekly studies.2) Comment on at least two other students' post.

Readings & Media

· Week 2 lecture notes

· Ch.1 - What is dementia? Unpicking what is "known".

· Visit the website:

· Alzheimer's Association: What we know today about Alzheimer's Disease (Links to an external site.)

· Articles:

· Aging brains use extra regions to shore up eroding abilities.

Actions

· Aging's misunderstood virtues.

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Week 2 Lecture Notes

The Medicalization of Dementia

This text book presents the study of dementia from a social science perspective. Two conceptual framework s underlie this discussion of dementia studies:

· The sociology of health and illness

· The sociology of knowledge

If dementia is considered as a chronic illness, the following socio-structural approaches within the sociology of health and illness are relevant to understanding the illness:

· Structural functionalists:	Structural functionalists look at the impact of an illness for the individual, their family and their day to day lives.
· Interactionists:	Interactionist perspectives focus more on the meanings that the illness has for the individual and family and the impact on the sufferer’s identity and sense of self.

 

Both of these sociological approaches to understanding health & illness share the assumption that illness is the direct opposite of the norm and that not having a healthy mind and body is associated with dysfunction and deviance. When behaviors are defined as medical problems the medical profession is given the authority to control this behavior through medical treatment. Medicalization of this illness gained popularity in the 70s and 80s. Social scientists have challenged the medicalization of dementia by showing that making dementia symptoms a disease was a way to give the medical profession authority to control the unacceptable abnormal behavior through medical treatment.(Innes,p.4)

As you recall from last week’s studies, dementia is an umbrella term for a number of health conditions that result from extensive damage to the brain. The most common definitions highlight dementia's identity as a biomedical disease. The following definitions can be found on p. 4 of your text.

Alzheimer's disease is a degenerative brain disease characterized by a progressive decline in memory, thinking, comprehension, calculation, language, learning capacity and judgment.

The term "dementia" is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions, including Alzheimer's disease, stroke and many other rarer conditions. Symptoms of dementia include loss of memory, confusion and problems with speech and understanding. (Alzheimer's Society, 2006)

The latest version of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-5 2013) recently incorporated dementia into the diagnostic category of major neuro cognitive disorder.

To establish a diagnosis of dementia using the new manual a physician has to determine the cause of the individual's symptoms in order to eliminate other disorders that mimic dementia but are reversible with treatment. Common causes of reversible dementia are depression, delirium, side effects from medications, thyroid problems, certain vitamin deficiencies and excessive use of alcohol.

In contrast Alzheimer's disease and other dementias are caused by damage to neurons that cannot revers with treatment. Different types of dementia are associated with distinct symptom patterns and brain abnormalities.

Although research has shown a lot about AD, the changes in the brain that trigger the development of AD and the order in which the changes occur largely remain unknown.T

References:

· Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

 

Week 2 Lecture Notes

History of Alzheimer's Disease

A look into the history of just one form of dementia, Alzheimer’s disease, shows that knowledge about dementia is still a work in progress. Some of the language used and symptoms described today go back even further than the origins of the disease label taken from the work of Alois Alzheimer 100 years ago. In fact, Holstein in (1997) takes the progression of understanding about Alzheimer’s disease and senile dementia back to the years between 1885 and 1920, a good 20 years before Alzheimer described a patient whose symptoms began with memory loss and disorientation. It can be shown that Alzheimer’s disease, senility and senile dementia have attracted different degrees of attention over time. Other authors such as Dillman (2000) also tell us that elements of what is known and believed in contemporary times can be traced back to the early 20th century. The dilemma of separating pathology from normalcy in old age had not been resolved by the 1920s leaving those following in the footsteps of Alzheimer in a dilemma. Symptoms arising from neurological impairment continued to be medicalized. This has resulted in limiting the focus of inquiry to neurobiology or neuropsychology of the person with dementia disregarding the influence of the psychosocial setting where the person lives.

Alois Alzheimer (Links to an external site.) Neuropathologist, credited with identifying Alzheimer's disease. Credits: image @ wikipedia.org

 

References:

· Holstein, 1997, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Dillman, 2000, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

 

Week 2 Lecture Notes

Additional History: Critiques of the Biomedical Model

One author, Lyman in 1989 critiques the biomedical model and strongly advocates for including social factors in the study of dementia. Lyman maintains that the medical sociologists and social gerontologists paid little attention to dementia in the 1980's. Literature at that time accepted the medical dictates of stages of the disease and the inevitability of a "social death". Then came the 1990s and the introduction of the "anti-dementia" drugs for the "disease of the century." The medical model was used to legitimize treatments and control of people with dementia through the use of physical or chemical restraints. Lyman argues that this is an example of the "medicalization of deviance" where behavior that is hard to understand is "explained by pathological conditions of somatic origin subject to treatment by medical authority." (Lyman, 1989)

More recently, Alzheimer's disease has gained much public interest. The Alzheimer's movement in the US has attracted government attention and funding for biomedical research in anticipation of the economic burden of the numbers of dementia sufferers predicted to increase in the future. Innes(2009) suggests that it is unfortunate that the funders of research are so focused on finding a cure for the disease that care for the people with dementia today is relegated to second place.

 

References:

· Lyman, 1989, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

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Week 2 Lecture Notes

The Construction of Dementia

What are some of the alternative ways that have been advanced to understand dementia?

Social scientists have contributed to the study of dementia largely by deconstructing many of the views previously held by the medical profession. Gubrium (1986) was one of the first to question the medical views of dementia by taking issue with the terms "Alzheimer's disease" and "senile dementia". Gubrium also disagreed with the assumption that dementia was an extreme form of normal aging. His belief was that those elders with dementia were experiencing a disease that is distinct from normal aging.

Gubrium (1999)set out the context for commonly held beliefs about Alzheimer's disease. He also wrote a text targeted at care professionals drawing attention to different interpretations that can be placed on and by older people with dementia. (The Mosaic of Care, 1991) Here are a few examples of questions:

· Can a person's actions be understood to be part of his/her dementia?

· Or could they be understood to be part of a person's strategy to challenge the control of the care setting exerted by the caregiver providing a service?

Others including Harding and Palfrey (1997) challenged what is known about dementia through social constructionism. They agreed with Gubrium that Western society considered dementia as equated with old age binding it with the fear of aging, disease and death . Social scientists have not received mainstream attention with these challenges.

Please listen to the following NPR podcast on the debate about Alzheimer's disease and senile dementia, and cure vs. care.

Emphasis on Alzheimer's Cure Debated NPR, Nov. 6th, 2006

Click for the audio transcript.

Morning Edition November 6, 2006 - RENEE MONTAGNE, host: This is MORNING EDITION from NPR News. I'm Renee Montagne. Good morning. STEVE INSKEEP, host: I'm Steve Inskeep. It's been 100 years since a German psychiatrist named Alzheimer presented a paper that described the puzzling symptoms in one of his patients. The brain disease he described is now known by his name. And today in Cleveland, experts Alzheimer's disease. Some say we've put too much hope in a cure. NPR's Joseph Shapiro reports. JOSEPH SHAPIRO: The doctor was Alois Alzheimer. His patient, Auguste D, wasn't even old. Professor JESSE BALLENGER (Pennsylvania State University): She was a 51-year-old woman. SHAPIRO: Jesse Ballenger has written a history about the way Alzheimer's disease is seen in America. He's a professor at Penn State, and he says that in 1906, Dr. Alzheimer wasn't trying to understand the illnesses of old age. He was just trying to keep the practice of Psychiatry up to date. Prof. BALLENGER: Psychiatry was falling behind. This is the age of the germ, and the rest of medicine is moving forward with much more scientific, much more biologically based ability to explain why people are ill. SHAPIRO: Alzheimer was looking for a biological explanation. Prof. BALLENGER: So the hope was, we will find disorders in the brain. We will understand how mental illnesses are rooted in changes in the brain. SHAPIRO: When Dr. Alzheimer first met his patient, she had almost no memory. She was sometimes angry and disoriented. A few years later, when she died, the psychiatrist had her brain and spinal cord sent to him in a crate on a passenger train. He examined the woman's brain and found the plaques and tangles we now identify as the proof of Alzheimer's disease. Then Dr. Alzheimer presented his findings to a conference of psychiatrists. Ballenger says Alzheimer's discovery was met with a big yawn. Prof. BALLENGER: The striking thing is how tremendously insignificant it seemed. It got virtually no attention. SHAPIRO: Ballenger says that's because what Alzheimer found wasn't much different from what doctors already knew sometimes happen when people got old. Sometimes they develop the condition already known as senile dementia. It would be called that until the 1970s, and even the early 1980s. A change in language took place. Before Jesse Ballenger became an historian, he worked at a hospital as a nurse aide. One day staffers were told that changed the way they refer to older people with faded memories. Prof. BALLENGER: They literally brought the nursing assistants in and said, you know, you've kind of grown up thinking about people having senility when people are confused, but they're suffering from a disease, and that disease is Alzheimer's. SHAPIRO: Ballenger says the name change was pushed by government officials as a way to get more money for research. Better to call it a disease instead of a normal part of aging. Prof. BALLENGER: Because it was thought that - and I think quite correctly -that you were going to have trouble selling senile dementia as an object of a large federally funded research effort, but a dread disease, you're talking now about millions of people, the fourth leading cause of death in the United States. A case is made based on that for it being of massive public health issue. SHAPIRO: Today, there's lots of research money to look for cures and new drugs. Not everyone thinks that's the right priority. Like Peter Whitehouse. He's done some of the important research. He's a physician at Case Western Reserve University in Cleveland. Now he's have second thoughts about all the emphasis on finding a cure. Dr. PETER WHITEHOUSE (Case Western Reserve University): Care needs to be dominant over cure, but it's not. SHAPIRO: Whitehouse says what people with Alzheimer's disease and their families really need is help with the day to day issues of care. He thinks a lot of the money we now put into research might be better spent in other ways. Dr. WHITEHOUSE: There's an opportunity cost there. There are some things we can do to keep ourselves healthier as we age that have to do with those very hard issues of physical exercise and obesity and keeping a sense of purpose in life. Those things are likely to always be more effective than any biological therapy we could produce. SHAPIRO: And Jesse Ballenger, the historian, agrees. He says if Dr. Alzheimer could come back today, 100 years after he presented his famous paper, he'd be shocked that what was once seen as a normal part of aging is now called a disease and a health problem to be solved. Joseph Shapiro, NPR News. Copyright © 2006 National Public Radio®. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to National Public Radio. This transcript is provided for personal, noncommercial use only, pursuant to our Terms of Use. Any other use requires NPR's prior permission. Visit our permissions page for further information. NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR's programming is the audio.

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References:

· Gubrium, 1986, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Gubrium, 1999, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· The Mosaic of Care, 1991, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Harding & Palfrey, 1997, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Podcast: Shapiro, J. (2006, November 6). Emphasis on Alzheimer's Cure Debated. Morning Edition. Retrieved from:http://www.npr.org/templates/story/story.php?storyId=6430300&from=mobile

· Transcript: Shapiro, J. (2006, November 6). Emphasis on Alzheimer's Cure Debated. NPR Mornin g Edition.Retrieved from: http://www.npr.org/templates/transcript/transcript.php?storyId=6430300

Week 2 Lecture Notes

Social Psychology of Dementia

(Credits: image @ slate.com)

 

Tom Kitwood (UK) and Steven Sabat (US) in the late 80s and early 90s began advancing alternative understandings to the decline, decay and deficiency models of dementia commonly advocated by the biomedical approach at that time.

Kitwood began in 1990 writing articles about the impact interactions with caregivers can have on the person with dementia. His key contribution to understanding dementia was his insistence that what he termed "personhood", defined as "a status or standing bestowed upon a human being, by others, in the context of social relationship and social being implies recognition, respect, and trust", should be preserved, even if a person was diagnosed with dementia. "Malignant Social Psychology" was the term he used to describe a range of interactions that could be experienced by a person with dementia which would be detrimental to their well-being. His book Dementia Reconsidered: The Person Comes First was published in 1997.

Sabat and the self: The central concern of his work is to stress that aspects of self remain, even for those who are labeled as having ‘severe’ or ‘advanced’ dementia. He argues that there are three forms of self:

References:

· Kitwood, 1997, 1998, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Sabat, 1994, 2001, 2002, 2005, 2006, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

Contributions of Social Psychology to Understanding Dementia

Contributions of Social Psychology to Understanding Dementia include:

· Increased knowledge about the experience of dementia at the individual level

· Increased knowledge about the impact dementia may have on self or personhood of individuals

· Raised the intensity of interest and support for person-centered approaches to dementia during the last decade

· Texts advocating care practices similar to Kitwood’s approach are worldwide, popular in America The Best Friends Approach to Dementia Care (Bell & Troxel, 2003)

· Person-centered care, person-hood and well-being phrases are commonly used

· In day-to-day work lives of persons working with dementia residents

Kitwood does not challenge dementia as a disease category however he does take issue with the categorization of dementia with a "standard paradigm" as only a neurological impairment. He adds dimensions of social psychology, physical health, life history and biography. Kitwood also advocates the need for skilled care practitioners and therapeutic interventions rather than the use of psychotropic medicines. (Kitwood,1997)

References:

· Bell & Troxel, 2003, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Kitwood,1997, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

What is Critical Gerontology?

Critical gerontology is an approach within social gerontology that is relevant to understanding dementia. Central to this viewpoint is that aging is socially constructed and comes from principles within areas concerned with the study of old age. These areas are: sociology, demography, anthropology and political economy. (Baars et al., 2006)

Old age today is surrounded by mixed perceptions that include negative thoughts like:

· older people are a homogenous group

· ill health is expected

· as older people live longer the burden of dependency will increase for society.

It is difficult to argue that these are myths especially in our country as the numbers of elders who have the potential to need care continue to increase while the number of working-age persons who pay taxes for health and social services for them shrinks.

Beliefs about the future burden that will be placed on society shape the social world experienced by older people. The interplay between society, image and place provides insights into the pervasiveness of ageism within Western societies. (McHugh, 2003) It would be hard for elders not to internalize these ageist messages and fear being a burden to others in the future.

Johnson (2005) reviewed the social construction of old age over time and found various ways that different societies perceived their older people at different moments in time. These changes in perception or constructions of old age reflect social and political concerns at different points in time. A current example in our society could be the diversity of opinions about how to change Medicare for the aged during these troubling economic times.

Distribution of resources is thought to prompt the emergence of critical gerontology an issue that is argued by some to be of global importance. Critical gerontology has argued for the need to study the lives of older people including their identities and the way their experiences are represented (Walker, 2006) in the same way that the dementia field has begun to include the views of people with dementia.

References:

· Baars et al., 2006, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Johnson, 2005, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· McHugh, 2003, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Walker, 2006, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

 

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What are the Problems and Effects of Biomedicalization of Old Age?

The concept of a ‘mask’ has been used by persons concerned with aging experiences. Use of the term ‘mask of aging’ or ‘mask of dementia’ has been developed and applied to the experience of dementia. Individuals who are experiencing old age and dementia are figuratively speaking, wearing this experience on top of the self that the individual wishes to recognize.

What are the problems and effects of biomedicalization of old age? (click the question to view the answer)

· It has fostered the tendency to view aging negatively as a process of inevitable decline, disease and irreversible decay

· It has led aging to be place in the domain and control of biomedicine

· It has promoted a view of the aged body as simultaneously a disease entity, a site for restoration and a space for improvement (Kaufman et al, 2004)

· Interventions to prolong life places older people under obligation to accept treatment

· Advent of anti-dementia drugs fuels the search for prolonging life in hope for cure

· It continues to see old age as a problem to be solved rather than a stage of life to be embraced and accepted

What is Known about Dementia?

In spite of the fact that medical understandings of dementia have dominated dementia studies discourse for 100 years, social psychologists and social scientists have been influenced to challenge and contribute to shaping alternative discourses about dementia.

Key factors that drive these social scientists area:

· Lack of consensus over medical categorizations and treatments

· The never-ending quest for a cause and cure

Key contribution of social psychologists and sociologists like Sabat, Kitwood and Gubrium is that they offer alternative explanations of the lived experiences of dementia to the pseudo-medical interpretations of loss of self, abilities and meaningful lives. Even though conceptual difficulties surround the term "dementia" there is a moral challenge that remains no matter what definition you use, and that is to enter the culture of dementia. (Post, 2000)

Dementia can promote fear due to the images of the loss of selfhood so prevalent in the literature. Examples of publication titles in the text, such as Alzheimer’s Disease: Coping with a Living Death (Woods, 1989) and “The Loss of Self”(Cohen and Eisdorfer, 1986) have contributed to a climate where dementia is perceived negatively. It was not until researchers provided examples of the continuation of aspects of self or personhood that people started looking at the experiences of those directly affected by dementia-the diagnosed and their caregivers.

Vittoria (1999) provides further insights into the lives of people with dementia living lives in long-term care settings. She demonstrates that the lives of those in long term care will be perceived by different people in different ways depending on the starting point or the perspective a person. Vittoria challenges the often negative perceptions of dementia care based on other interpretations of institutional life.

The dominant medical position at the end of chapter 1 is that Senile Dementia of the Alzheimer’s Type (SDAT) is a disease where various events cause pathological changes in the brain and these changes could be a result of age-related characteristics but not exclusively. That is to say that late stage Alzheimer’s disease involves a combination of factors or events: those produced within the body and those from outside the body It is not clear how much age factors in the picture.

The sociological approach would place the emphasis of dementia care on responding to the care needs of the dementia sufferers while the medical approach places emphasis on future treatment of disease.

 

References:

· Cohen & Eisdorfer, 1986, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Holstein, 1997, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Post, 2000, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Vittoria, 1999, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

· Woods, 1989, cited in Innes, A. (2009). Dementia Studies: A Social Science Perspective. Thousand Oaks, CA: Sage

 

Readings & Media

By the end of week 2, please complete the following readings:

· Week 2 lecture notes

· Ch.1 - What is dementia? Unpicking what is "known".

· Visit the website: Optional-13 minute video about beta amyloid protein

· Alzheimer's Association: What we know today about Alzheimer's Disease

· Articles:

· Aging brains use extra regions to shore up eroding abilities.

· Aging's misunderstood virtues.

Discussion

Please participate in the following discussions via the Discussions tool for this week. Refer to the syllabus for discussion guidelines and grading policies for weekly mandatory participation.

· Week 2 Discussion: Personal Encounter with Dementia

Looking Ahead

· Term paper topic is due week 3.