This document summarizes issues around maintaining autonomy and personhood for those with Alzheimer's disease. It discusses how caregivers now focus on preserving communication, social behaviors, and individual needs rather than just medical aspects. Historically, those with dementia were often declared incompetent and institutionalized, having their personhood and rights taken away. Nowadays, specialized care aims to safeguard individuals and optimize their quality of life while living with dementia. As societies age and more people develop dementia, balancing patient autonomy with issues of diagnosis disclosure and determining competence presents ongoing ethical challenges for caregivers.
A critical discussion of the focus on the biomedical perspective in the preve...GERATEC
The biomedical focus on dementia brought the phenomena of what was considered a normal part of ageing into the medical and scientific field of interest (Bartlett, R and O’Connor, D. 2010). This perspective comes with a strong focus on neurodegenerative decline and deficits. Even though Alzheimer’s disease was around for more than 70 years since noted by Alois Alzheimer, it was only in the 1980’s that the “disease emerged as an illness category and policy issue” (Lyman, A. 1989). The Nun Study of David A. Snowdon, PhD, which started in 1991, brought a new perspective to the research into dementia. It was discovered during autopsies that people who have lived their lives without any signs of dementia, actually had amyloid plaques and tangles in their brains congruent to people living with dementia (Snowdon, D.A. 2003). Biomedical research is at this stage the primary focus of research into dementia, receiving most of the funding budget. According to an article in Therapy Today (July 2012) in the UK alone, £66 million will be allocated to dementia research by 2015, of which only £13 million is earmarked for social science research. In the WHO report on Dementia, Daviglus M.L. et al of the US National Institutes of Health state that “firm conclusions cannot be drawn about the association of any modifiable risk factor with cognitive decline of Alzheimer disease”.
The importance of the research findings of the biomedical model cannot be underestimated. However, considering the facts that t this point there seems to be nothing that can prevent nor cure Dementia, I am of the opinion that more research and funding should focused on creating a life worth living for people who live with dementia.
A critical comparison of the strengths and limitations of the pyschological a...GERATEC
The phrase “Understanding Dementia” is perhaps the ultimate oxymoron. For how can we even begin to “understand” something of which we know neither the cause nor the cure? In his introduction to Al Power’s book “Dementia beyond drugs” (Power, 2011), Bill Thomas, founder of The Eden Alternative says: “Conventional wisdom, if you can call it that, holds that dementia represents a peculiar, deadly, and completely irredeemable kind of decline.” (p.ix). A phenomenon that has been around as long as human beings themselves have been around, dementia presents an existential crisis to humanity in that it threatens everything that most people aim for – superficial or not – in living what Socrates described as a long, good life. In Jewish tradition it is customary to wish someone a long life when a relative passes away. Is this a good, happy wish or is it a curse when someone is diagnosed with Dementia every four seconds in the world? (World Health Organization, 2012)
The Psychological and the Gerontological approaches constitute an expansion on the purely biomedical perspective of the disease, exploring the impact that dementia has on the individual living with it, as well as the impact that it has on the broader community. It is argued in this assignment that while Psychology and Gerontology have expanded on the narrow viewpoints of the biomedical approach, the heterogeneous nature of the manifestations of dementia, especially in the Developing World where research is not on the political agenda, leaves the world none the wiser in how to deal with this epidemic.
A critical assessment of the research literature that explores the disclosure...GERATEC
Being diagnosed with dementia can impact on an individual’s emotional, vocational, spiritual, physical, social, intellectual and personal dimensions of wellness (Montague, 2013). The stigmatisation that comes with the diagnosis can be as devastating as the disease itself. For this reason alone, seeking a diagnosis when suspecting that there could be something wrong with one’s cognitive functioning, is not a simple or easy decision.
Christine Bryden, in her book “Dancing with Dementia” (2005), makes the statement “It took me three years before I could speak openly about my diagnosis, overcoming the hopelessness and depression that exacerbated my dementia and took me on a downward spiral of dysfunction” (Bryden, 2005, p39).
The psychological impact of a diagnosis (Lee et al., 2014) is severe, taking some individuals up to six months to adjust and cope with the feelings of loss before they can start to create new coping strategies and mechanisms of living with dementia.
Dementia diagnosis in lesser developed countries like those on the African continent, where research is scarce and stigmatisation can put lives in danger (Kalula and Petros, 2011), is in itself problematic. Bunn et al. (2010) allude to the transferability of research findings that are mostly geographically limited, implying that the disclosure of a diagnosis might be even more complex in non-western cultures.
Not disclosing a diagnosis raises ethical concerns (Rai, 2009) that seem to be missing in much of the research.
A critical consideration of the potential of design and technology for the ca...GERATEC
Florence Nightingale gives some of the first words of advice on design in her “Notes on Nursing” - “But the fewer passages there are in a hospital the better”, referring to the fact that hospital design can impact the need for fresh air, that in her opinion is essential to the healing process (Nightingale, F. 1860). In 1943 Maslow developed his hierarchy of needs, starting with the physical need to be safe and secure, above which is the need to be loved, connected and belong, followed by the higher needs of understanding, knowing and self-actualization. The relationship between the physical buildings/environment and the impact on quality of life of the people living with dementia is the focus of this assignment.
The World Health Organization Quality of Life Assessment Group (1998) includes the physical environment as one of the dimensions of the quality of life. The quality of life of people living with dementia has been in the spotlight over the past years, and Ready and Ott (2003) did a review of the measurement tools, pointing out the differences and complexities of trying to determine exactly what constitutes quality of life for people living with dementia. The transactional interaction between people living with dementia, their care partners (both formal and informal), the new role of technology and the design of buildings and cities are explored in terms of the role it plays in constructing a new discourse for improvements in the quality of life of people living with dementia.
Caring for a family member with dementia is fraught with burden and stress: A...GERATEC
The title “Caregiving for a family member with dementia is fraught with burden and stress” elicits more questions than answers. Who is this caregiver – husband or wife, son or daughter, second husband or wife, stepson or –daughter, daughter- or son-in-law, grandchild – a list with endless variations. Would the experience be different when caring for a mother to that of caring for a father, husband or wife, brother, uncle, aunt, cousin, and nephew? Can the term “caregiver” be considered a singular entity with a singular emotional experience? What is the role of - amongst others - culture, ethnicity, gender, sexual orientation, language, religion, age, personality, social environment and education? What role does the type of dementia of the care recipient play? Do all people deal with burden and stress in the same way, and if not, why not? What constitutes burden and stress, and how are these defined within the heterogeneous environment of caregiving?
It is often said, “If you have met one person with dementia, you have met one person with dementia”. The same might very well apply to the family caregiver. Nolan et al (2002) refer to Dilworth-Anderson and Montgomery & Williams (2001) when saying that “In essence the message is clear – caregiving can only be fully appreciated and adequately supported in its appropriate context”.
Caring for a vulnerable person should be a noble calling, inspired by love and affection for the individual and sustained by the support of a caring community. The reality of life as a Carer for most people in South Africa cannot be further removed from this ideal.
A critical discussion of the focus on the biomedical perspective in the preve...GERATEC
The biomedical focus on dementia brought the phenomena of what was considered a normal part of ageing into the medical and scientific field of interest (Bartlett, R and O’Connor, D. 2010). This perspective comes with a strong focus on neurodegenerative decline and deficits. Even though Alzheimer’s disease was around for more than 70 years since noted by Alois Alzheimer, it was only in the 1980’s that the “disease emerged as an illness category and policy issue” (Lyman, A. 1989). The Nun Study of David A. Snowdon, PhD, which started in 1991, brought a new perspective to the research into dementia. It was discovered during autopsies that people who have lived their lives without any signs of dementia, actually had amyloid plaques and tangles in their brains congruent to people living with dementia (Snowdon, D.A. 2003). Biomedical research is at this stage the primary focus of research into dementia, receiving most of the funding budget. According to an article in Therapy Today (July 2012) in the UK alone, £66 million will be allocated to dementia research by 2015, of which only £13 million is earmarked for social science research. In the WHO report on Dementia, Daviglus M.L. et al of the US National Institutes of Health state that “firm conclusions cannot be drawn about the association of any modifiable risk factor with cognitive decline of Alzheimer disease”.
The importance of the research findings of the biomedical model cannot be underestimated. However, considering the facts that t this point there seems to be nothing that can prevent nor cure Dementia, I am of the opinion that more research and funding should focused on creating a life worth living for people who live with dementia.
A critical comparison of the strengths and limitations of the pyschological a...GERATEC
The phrase “Understanding Dementia” is perhaps the ultimate oxymoron. For how can we even begin to “understand” something of which we know neither the cause nor the cure? In his introduction to Al Power’s book “Dementia beyond drugs” (Power, 2011), Bill Thomas, founder of The Eden Alternative says: “Conventional wisdom, if you can call it that, holds that dementia represents a peculiar, deadly, and completely irredeemable kind of decline.” (p.ix). A phenomenon that has been around as long as human beings themselves have been around, dementia presents an existential crisis to humanity in that it threatens everything that most people aim for – superficial or not – in living what Socrates described as a long, good life. In Jewish tradition it is customary to wish someone a long life when a relative passes away. Is this a good, happy wish or is it a curse when someone is diagnosed with Dementia every four seconds in the world? (World Health Organization, 2012)
The Psychological and the Gerontological approaches constitute an expansion on the purely biomedical perspective of the disease, exploring the impact that dementia has on the individual living with it, as well as the impact that it has on the broader community. It is argued in this assignment that while Psychology and Gerontology have expanded on the narrow viewpoints of the biomedical approach, the heterogeneous nature of the manifestations of dementia, especially in the Developing World where research is not on the political agenda, leaves the world none the wiser in how to deal with this epidemic.
A critical assessment of the research literature that explores the disclosure...GERATEC
Being diagnosed with dementia can impact on an individual’s emotional, vocational, spiritual, physical, social, intellectual and personal dimensions of wellness (Montague, 2013). The stigmatisation that comes with the diagnosis can be as devastating as the disease itself. For this reason alone, seeking a diagnosis when suspecting that there could be something wrong with one’s cognitive functioning, is not a simple or easy decision.
Christine Bryden, in her book “Dancing with Dementia” (2005), makes the statement “It took me three years before I could speak openly about my diagnosis, overcoming the hopelessness and depression that exacerbated my dementia and took me on a downward spiral of dysfunction” (Bryden, 2005, p39).
The psychological impact of a diagnosis (Lee et al., 2014) is severe, taking some individuals up to six months to adjust and cope with the feelings of loss before they can start to create new coping strategies and mechanisms of living with dementia.
Dementia diagnosis in lesser developed countries like those on the African continent, where research is scarce and stigmatisation can put lives in danger (Kalula and Petros, 2011), is in itself problematic. Bunn et al. (2010) allude to the transferability of research findings that are mostly geographically limited, implying that the disclosure of a diagnosis might be even more complex in non-western cultures.
Not disclosing a diagnosis raises ethical concerns (Rai, 2009) that seem to be missing in much of the research.
A critical consideration of the potential of design and technology for the ca...GERATEC
Florence Nightingale gives some of the first words of advice on design in her “Notes on Nursing” - “But the fewer passages there are in a hospital the better”, referring to the fact that hospital design can impact the need for fresh air, that in her opinion is essential to the healing process (Nightingale, F. 1860). In 1943 Maslow developed his hierarchy of needs, starting with the physical need to be safe and secure, above which is the need to be loved, connected and belong, followed by the higher needs of understanding, knowing and self-actualization. The relationship between the physical buildings/environment and the impact on quality of life of the people living with dementia is the focus of this assignment.
The World Health Organization Quality of Life Assessment Group (1998) includes the physical environment as one of the dimensions of the quality of life. The quality of life of people living with dementia has been in the spotlight over the past years, and Ready and Ott (2003) did a review of the measurement tools, pointing out the differences and complexities of trying to determine exactly what constitutes quality of life for people living with dementia. The transactional interaction between people living with dementia, their care partners (both formal and informal), the new role of technology and the design of buildings and cities are explored in terms of the role it plays in constructing a new discourse for improvements in the quality of life of people living with dementia.
Caring for a family member with dementia is fraught with burden and stress: A...GERATEC
The title “Caregiving for a family member with dementia is fraught with burden and stress” elicits more questions than answers. Who is this caregiver – husband or wife, son or daughter, second husband or wife, stepson or –daughter, daughter- or son-in-law, grandchild – a list with endless variations. Would the experience be different when caring for a mother to that of caring for a father, husband or wife, brother, uncle, aunt, cousin, and nephew? Can the term “caregiver” be considered a singular entity with a singular emotional experience? What is the role of - amongst others - culture, ethnicity, gender, sexual orientation, language, religion, age, personality, social environment and education? What role does the type of dementia of the care recipient play? Do all people deal with burden and stress in the same way, and if not, why not? What constitutes burden and stress, and how are these defined within the heterogeneous environment of caregiving?
It is often said, “If you have met one person with dementia, you have met one person with dementia”. The same might very well apply to the family caregiver. Nolan et al (2002) refer to Dilworth-Anderson and Montgomery & Williams (2001) when saying that “In essence the message is clear – caregiving can only be fully appreciated and adequately supported in its appropriate context”.
Caring for a vulnerable person should be a noble calling, inspired by love and affection for the individual and sustained by the support of a caring community. The reality of life as a Carer for most people in South Africa cannot be further removed from this ideal.
Providing Care
Following Sudden Death:
The Practice of Viewing
ABSTRACT
En règle générale, à la suite d’une mort subite, il faut décider s’il devrait y avoir une exposition en maison funéraire ou non. De nombreuses contradictions existent dans les lignes directrices de la pratique et il y a un manque manifeste de données
probantes à l’appui de l’exposition et de son incidence sur le processus du deuil dans son ensemble. En outre, il faut examiner les rôles et les attitudes des professionnels les plus immédiatement impliqués à la suite d’une mort subite, car, d’ordinaire, il n’y a pas d’exposition sans l’implication de professionnels. Les travailleurs sociaux sont souvent
les premiers professionnels appelés à répondre aux besoins de personnes vivant un deuil subit; ils peuvent jouer un rôle clé de représentation relativement aux besoins de ces personnes et les aider à composer avec leur peine. Cette étude qualitative s’est penchée sur les perspectives et l’expérience de personnes subitement endeuillées, concernant l’exposition en maison funéraire. Les résultats de cette étude sont regroupés sous trois
thèmes : les éléments particuliers afférents à l’exposition, les réactions psychiques des personnes touchées et les interactions professionnelles. On s’intéresse principalement ici aux interactions professionnelles.
I watched and I was ignored by everyone. I was ignored. The ambulance workers did their job. The police walked in and out. The fireman walked in and out. They looked at me. No one sat with me. No one acknowledged me, with the exception of one ambulance worker who came up to me and said, “We’re doing everything we can.” He was the only person that acknowledged me at all, and that pisses me off now (Louise1, bereaved spouse).
Medicine is at heart a narrative activity–the telling and receiving of story. The patient interview is based on the notion that the patient, as story-teller, will share his or her experience, and that the doctor, as active listener, will be able to take that story and make sense of it in the world of science and medicine.
Health care is supposed to build on the story with each contact, but if we don’t know the story, each contact becomes a closed episode of its own, disconnected from every other episode. Fragmentation results as the outcome of a nonstoried approach to health care.
In this workshop, we will explore how the ancient art of storytelling can foster an empathetic healthcare model and generate a framework for a more holistic approach to treating the patient, while at the same time providing a rich source of diagnostic clues.
Narrative medicine represents a storied understanding of health. It’s a return to listening to the patient’s story. Doctors who are trained to listen to the story of the disease need to learn to listen also to the story of the illness. We’ll explore how to incorporate narrative medicine and storytelling into medical education
Narrative approach plays an epoch-making role in improving the level of medical care, clinical psychology and welfare area.
First, I introduce the process and meaning of the Narrative Based Medicine
Next, I dare to observe a negative aspect and risk in Narrative Approach to look for a new role of Narrative Approach.
The work was presented during the II Workshop on Medical Anthropology in Rome, October 14th - 15th 2011.
OMEGA, Vol. 64(1) 65-82, 2011-2012
FAMILY MEMBERS’ EXPERIENCES WITH
VIEWING IN THE WAKE OF SUDDEN DEATH*
CHRISTINA HARRINGTON, MSW, RSW
BETHANY SPROWL, BSW, RSW
Hamilton Health Sciences
ABSTRACT
Sudden deaths leave families in crisis and interacting with many professionals from notification through to burial. Whether to view the deceased is often central to discussion. Practice guidelines have evolved over time regarding where, when, how, and why viewing should or should not occur. Unfortunately, there is much contradiction in existing recommendations and a marked absence of a supporting evidence base for the practice of viewing itself, and the influence of this practice on the overall bereavement process.
Using a qualitative approach, this study explored the perspectives and experiences of the suddenly bereaved with respect to: viewing or not having viewed; whether or not their viewing experiences have impacted on their bereavement process; and explored particular aspects of their experience such as interactions with various professionals. Results of this study are clusteredand presented under three core themes: viewing specifics; interpersonal responses; and professional interactions.
INTRODUCTION
The telephone rang about twenty after one in the morning and I thought, “Oh, she wants a ride home.” It was her boyfriend telling me there had been an accident. [Later at the hospital] They came in to tell my husband and I that she had passed away. All I can remember, I can see a doctor standing..talking and telling me this, and in the background I could hear somebody screaming. I didn’t realize it was me. . . . After they told us Sara had passed
away, I said, “I want to see her.” (Anna, bereaved mother)
*This study was funded by the P. X. Dermody Funeral Homes.
65
2011, Baywood Publishing Co., Inc.
doi: 10.2190/OM.64.1.e
http://baywood.com
Narrative medicine as a tool to detect the burden of illness: an application to myelofibrosis. Progetto realizzato da ISTUD per Novartis. Presentazione di Maria Giulia Marini.
Changelings: Children, Culture and Trauma
Vincenzo Di Nicola
Harvard Program in Refugee Trauma
Global Mental Health Course
Educational Objectives
The presentation will sensitize participants to appreciate basic questions about working with traumatized children and their families across culture to create trauma-informed care:
Why development matters – and how it changes the clinical presentation of trauma at different ages
Why family matters – and how it creates models for the experience of trauma that attenuate or amplify both developmental neurobiology and sociocultural influences
Why culture matters – and how it offers or limits the range of socially privileged perceptions and culturally sanctioned solutions
Outline
Children, Culture and Trauma: Three lenses
Children & Culture: “Looking Across at Growing Up”
Children & Trauma: “Changelings”
“The Nightmare of Childhood”
“The Longest Shadow”
“The Experimental Child”
Culture & Trauma: “Two trauma communities”
Clinical and cultural trauma studies
Healing
Rebrith
Aporias/Puzzles
How does bringing childhood, culture, and trauma together affect our understanding of each?
What does an archaeology of trauma reveal?
(R Mollica: What is the nature of trauma?)
What can be done?
Dissociative Identity Disorder (DID), sometimes called Multiple Identity Disorder, is a mental disorder characterized by two at minimum, distinct personality states. DID is one of the most talked about illnesses.
Providing Care
Following Sudden Death:
The Practice of Viewing
ABSTRACT
En règle générale, à la suite d’une mort subite, il faut décider s’il devrait y avoir une exposition en maison funéraire ou non. De nombreuses contradictions existent dans les lignes directrices de la pratique et il y a un manque manifeste de données
probantes à l’appui de l’exposition et de son incidence sur le processus du deuil dans son ensemble. En outre, il faut examiner les rôles et les attitudes des professionnels les plus immédiatement impliqués à la suite d’une mort subite, car, d’ordinaire, il n’y a pas d’exposition sans l’implication de professionnels. Les travailleurs sociaux sont souvent
les premiers professionnels appelés à répondre aux besoins de personnes vivant un deuil subit; ils peuvent jouer un rôle clé de représentation relativement aux besoins de ces personnes et les aider à composer avec leur peine. Cette étude qualitative s’est penchée sur les perspectives et l’expérience de personnes subitement endeuillées, concernant l’exposition en maison funéraire. Les résultats de cette étude sont regroupés sous trois
thèmes : les éléments particuliers afférents à l’exposition, les réactions psychiques des personnes touchées et les interactions professionnelles. On s’intéresse principalement ici aux interactions professionnelles.
I watched and I was ignored by everyone. I was ignored. The ambulance workers did their job. The police walked in and out. The fireman walked in and out. They looked at me. No one sat with me. No one acknowledged me, with the exception of one ambulance worker who came up to me and said, “We’re doing everything we can.” He was the only person that acknowledged me at all, and that pisses me off now (Louise1, bereaved spouse).
Medicine is at heart a narrative activity–the telling and receiving of story. The patient interview is based on the notion that the patient, as story-teller, will share his or her experience, and that the doctor, as active listener, will be able to take that story and make sense of it in the world of science and medicine.
Health care is supposed to build on the story with each contact, but if we don’t know the story, each contact becomes a closed episode of its own, disconnected from every other episode. Fragmentation results as the outcome of a nonstoried approach to health care.
In this workshop, we will explore how the ancient art of storytelling can foster an empathetic healthcare model and generate a framework for a more holistic approach to treating the patient, while at the same time providing a rich source of diagnostic clues.
Narrative medicine represents a storied understanding of health. It’s a return to listening to the patient’s story. Doctors who are trained to listen to the story of the disease need to learn to listen also to the story of the illness. We’ll explore how to incorporate narrative medicine and storytelling into medical education
Narrative approach plays an epoch-making role in improving the level of medical care, clinical psychology and welfare area.
First, I introduce the process and meaning of the Narrative Based Medicine
Next, I dare to observe a negative aspect and risk in Narrative Approach to look for a new role of Narrative Approach.
The work was presented during the II Workshop on Medical Anthropology in Rome, October 14th - 15th 2011.
OMEGA, Vol. 64(1) 65-82, 2011-2012
FAMILY MEMBERS’ EXPERIENCES WITH
VIEWING IN THE WAKE OF SUDDEN DEATH*
CHRISTINA HARRINGTON, MSW, RSW
BETHANY SPROWL, BSW, RSW
Hamilton Health Sciences
ABSTRACT
Sudden deaths leave families in crisis and interacting with many professionals from notification through to burial. Whether to view the deceased is often central to discussion. Practice guidelines have evolved over time regarding where, when, how, and why viewing should or should not occur. Unfortunately, there is much contradiction in existing recommendations and a marked absence of a supporting evidence base for the practice of viewing itself, and the influence of this practice on the overall bereavement process.
Using a qualitative approach, this study explored the perspectives and experiences of the suddenly bereaved with respect to: viewing or not having viewed; whether or not their viewing experiences have impacted on their bereavement process; and explored particular aspects of their experience such as interactions with various professionals. Results of this study are clusteredand presented under three core themes: viewing specifics; interpersonal responses; and professional interactions.
INTRODUCTION
The telephone rang about twenty after one in the morning and I thought, “Oh, she wants a ride home.” It was her boyfriend telling me there had been an accident. [Later at the hospital] They came in to tell my husband and I that she had passed away. All I can remember, I can see a doctor standing..talking and telling me this, and in the background I could hear somebody screaming. I didn’t realize it was me. . . . After they told us Sara had passed
away, I said, “I want to see her.” (Anna, bereaved mother)
*This study was funded by the P. X. Dermody Funeral Homes.
65
2011, Baywood Publishing Co., Inc.
doi: 10.2190/OM.64.1.e
http://baywood.com
Narrative medicine as a tool to detect the burden of illness: an application to myelofibrosis. Progetto realizzato da ISTUD per Novartis. Presentazione di Maria Giulia Marini.
Changelings: Children, Culture and Trauma
Vincenzo Di Nicola
Harvard Program in Refugee Trauma
Global Mental Health Course
Educational Objectives
The presentation will sensitize participants to appreciate basic questions about working with traumatized children and their families across culture to create trauma-informed care:
Why development matters – and how it changes the clinical presentation of trauma at different ages
Why family matters – and how it creates models for the experience of trauma that attenuate or amplify both developmental neurobiology and sociocultural influences
Why culture matters – and how it offers or limits the range of socially privileged perceptions and culturally sanctioned solutions
Outline
Children, Culture and Trauma: Three lenses
Children & Culture: “Looking Across at Growing Up”
Children & Trauma: “Changelings”
“The Nightmare of Childhood”
“The Longest Shadow”
“The Experimental Child”
Culture & Trauma: “Two trauma communities”
Clinical and cultural trauma studies
Healing
Rebrith
Aporias/Puzzles
How does bringing childhood, culture, and trauma together affect our understanding of each?
What does an archaeology of trauma reveal?
(R Mollica: What is the nature of trauma?)
What can be done?
Dissociative Identity Disorder (DID), sometimes called Multiple Identity Disorder, is a mental disorder characterized by two at minimum, distinct personality states. DID is one of the most talked about illnesses.
Self destructive behaviors and survivors of suicide
Final Research Paper edited
1. Maintaining Autonomy and Personhood with Alzheimer’s Dementia
Sretta Clark
GERO 510 – Spring 2014
2. Abstract
Alzheimer’s is an insidious disease, quietly taking the individual hostage, slowly
stripping away at the very fiber of their soul. The literature shows that the diagnosis brings with
it a unique set of ethical, moral and legal dilemmas. Much has been learned over the decades
regarding not only what is lost, but what remains of the person affected by the disease. Today
caregivers focus not just on the medical aspects of Alzheimer’s, but more importantly on the
survival of autonomy and personhood through enhanced communication techniques; a reflective
observation of social behaviors; and attunement and consideration of the individual’s needs.
Introduction
Certainly nothing can be more frightening than the thought of slowly losing every person,
every place, every memory one has accumulated over a lifetime. There is nothing more
unsettling than the notion of depending on the good graces of family, and often complete
strangers to navigate you through the unfamiliar scenery that becomes your world. Such is the
reality faced by each person diagnosed with Alzheimer’s. In the paper that follows, I combine a
multitude of previous literary works to map a path of the journey made by those diagnosed. It is
my hope to paint a picture of what the journey might entail for such a person; offering an
understanding of how we as caregivers can assist these individuals in maintaining whatever level
of dignity and autonomy possible as they face the changes before them.
______________________________________________________________________________
Historical Perspective and Treatment
Though we no longer refer to those suffering with Alzheimer’s as “demented”, the early
work of Dworkin, specifically his article, Autonomy and the Demented Self, was the impetus for
this paper. He notes that there are two ways in which we may consider a person suffering from
3. Alzheimer’s, either as a demented person, which emphasizes the individual’s present condition
and their subsequent abilities and limitations, or as a person who became demented, which
conversely sees the dementia as an event that has occurred as a part of the totality of the
individual’s life (Dworkin, 1986). The past century has witnessed a much needed shift from the
harsh view of the individual as “demented” to a more humanistic stance of an individual who is
experiencing dementia.
To expand on Dworkin’s work, it is necessary to examine our historical definitions,
assessments and treatments of persons found to be incompetent, presumably resulting from some
form of dementia. The 2007 work of Shackelford and Freidman provides an overview of the
attitudes and circumstances held by society and the courts in the mid-twentieth century, under
which an individual could be deemed incompetent and often institutionalized. It is difficult not to
view the declaration of incompetence, at least to some degree, as tantamount to the robbing of
one’s personhood. A psychiatrist today might be shocked to learn that the frail elderly were
institutionalized in asylums alongside schizophrenics and declared to be “insane” as recently as
1940. Mental incompetence was then gauged not by the medical milieu, but by the court, and
could be based on something as ambiguous as abdominal pain or alcoholism. A staggering 79%
of the incompetent wards were over the age of 60. This group was the most vulnerable, not only
by virtue of age, but often most vulnerable at the hands of those family and friends who had been
appointed by the courts to protect them, as well as the individuals employed to provide care in
the institution. Though the term “elder abuse” had yet to be coined, it was a reality in the
financial, mental and physical sense. Asylum life was difficult; reports of suicides and
maltreatment filled newspapers. By 1940, electroconvulsive therapy, insulin shock therapy, and
frontal lobotomies were acceptable treatment modalities. The courts did allow for the possibility
4. of “temporary incompetence”, in which an individual’s rights, and thus personhood could be
restored, however the line between who was incompetent, insane, or simply temporarily forgetful
was at best, blurred. It is not unrealistic to assume that those suffering from dementia could not
be deemed “temporarily incompetent” as dementia is a progressive disease, thus once
institutionalized, their fate was sealed.
Today we recognize that those diagnosed with dementia are not “insane”. To be certain,
they do require specialized care, but that care is provided in a manner designed not only to
safeguard the individual but also to optimize their quality of life.
Aging of Society in the Modern Era
The aging of society has been referred to as the “Silver Tsunami”. It’s a quirky little
phrase, that provokes a giggle and according to the marketing gurus employed by countless
products and services, it will be the time of one’s life. Images of elders leading the aerobics class
or taking kayaking lessons are both hope-filled and promising, however as is always the case,
there is another side to this story which receives much less accolades. The proportion of older
persons is expected to nearly double to 20% by the year 2030, but is living longer a good thing
for everyone? Longer life spans and low birth rates in recent decades mean that there will be
relatively fewer working-age adults to assist the increasingly larger number of older persons that
may be in need. In the United States, the responsibility for our elderly population is one
shouldered predominately by female family members. This tradition stems from the ideology of
familism; the belief that families should maintain a sense of privacy, free from outside intrusion.
The ideal type is typified when women are available and willing to assist the other members
(Killian & Ganong, 2002).
5. Among the multitude of possible diagnoses that may come with aging, is that of
dementia. Dementia is a global term referring to a class of diseases, associated most frequently
with the aging population. It becomes clear that as the population ages, so shall the number of
persons diagnosed with this disease. The disease course entails a progressive loss of cognitive
functioning, which will eventually hinder one’s ability to perform even basic self-care activities.
Of all forms of dementia, Alzheimer’s is the most common, accounting for two-thirds of all
identified cases and beginning with the development of amyloid plaque deposits in the brain.
These deposits are believed to cause inflammation that first alters the neurotransmitters, leading
eventually to neuron death. The first recognized signs of an evolving problem typically include
deficits with episodic memory and problem-solving, questionable judgment, and a struggle with
the use of ordinary language skills (Gatz, 2007). It is at this time, that medical intervention is
often sought.
To Tell or Not to Tell
The sense that something is wrong must teeter between pensive concern and paralyzing
fear. Regardless of the emotion felt, eventually the individual will find their way most probably,
to his or her primary care physician. It is at this juncture that the first of many ethical dilemmas
appears; should a physician tell or not tell the patient of the diagnosis. One would assume that a
physician would undoubtedly tell the patient of the medical findings, regardless of how difficult
the news might be, but that is not the case, nor is it even required. The Hippocratic Oath makes
no explicit statement about telling the truth. The Declaration of Geneva (1947), a modern
restatement of the Hippocratic Oath, states that the health of the patient should be the doctor’s
first consideration, but again does not address the veracity of his actions. The International Code
of Medical Ethics (1968/1983) demands that a physician deal honestly with patients in regards to
6. competence and professional misconduct, still yet it does not address honesty with regards to
disclosing a diagnosis. The World Medical Association in the Declaration of Lisbon (1981)
implies truth telling about diagnosis when it declares that patients have a right to accept or refuse
treatment after receiving adequate information. Finally, The General Medical Council (1995)
recommends that to establish and maintain trust in their relationship with patients, a physician
must give them “the information they ask for or need about their condition, its treatment and
prognosis…in a way they can understand” (Marzanski, 2000), but as we see, none of these
guidelines mandate truth-telling. Is it possible that physicians believe that with no viable
treatment or cure and with the insidious nature of the disease, disclosure would in fact be
detrimental to their patient? According to Marzanski, a survey of geriatric psychiatry consultants
showed that the majority of them “rarely” or only “sometimes” informed their patients about the
diagnosis and almost never about the prognosis. The determination to disclose information was
based on the level of impairment, with disclosure being made “nearly always” to those mildly
impaired, but rarely to those with moderate to severe impairment.
Given the fact that there is currently no known cure, relatively few effective treatments
and that the prognosis is certain only in that the condition will slowly lead to death, perhaps
withholding information is simply a form of benevolent deception. To explore this concept, we
look at principle-oriented bioethics, which suggests four points with regards to truth-telling to
patients: 1) autonomy, 2) non-maleficence, 3) beneficence and 4) justice. From the prospective
of autonomy, patients who are competent to make decisions should have the right to, and
physicians should have the duty to respect their preferences regarding their own care. This
presents the problem of considering competence. Is competence something that is all-or-nothing?
Depending on the stage of the disease at the time the patient seeks initial medical intervention,
7. competency may be called into question. Does a person with dementia who is perhaps no longer
competent to manage financial affairs, still competent with regards to making at least some
medical decisions? Non-maleficence refers to doing no harm. This is accomplished by weighing
the benefits versus the potential harm of disclosure and seeking an outcome that will yield
maximum good for the patient. Noble as it may seem, can a physician truly make such a decision
without having prior knowledge of the patient’s current life circumstances, support structure, and
so on? Justice points to the fair, equitable and appropriate treatment of the patient, which would
seem to imply truth-telling at all costs. To practice beneficence is to be concerned with and to
promote the welfare of the patient (Fu-Chang Tsai, 2001). I would suggest that when the
decision is made to withhold diagnostic and prognostic information from a patient, it is in fact
made with as a form of benevolent deception. I would further suggest that a withholding,
regardless of the reason, is to rob the individual of the autonomy and personhood he still
possesses. It remains controversial when, if ever, a person loses that right and whether
incompetence, defined by some as the inability to understand diagnostic information, is enough.
Akin to the dilemma of whether or not the physician chooses to divulge the diagnosis, is
that of the patient’s desire to be told. In a study of 30 participants (Marzanski, 2000), 20 reported
that nobody had ever talked to them about their illness. In cases where discussion had taken
place, disclosure was not always made by a physician; was presented with a minimizing
description of the situation; or was blatantly presented as a different finding (hearing impairment,
angina pectoris, and bereavement had been suggested as responsible for their present condition).
The overwhelming majority (21/30) of participants stated that they wanted to know what was
wrong with them, and in cases where diagnosis was known, wanted information as to the cause
and prognosis. They additionally stated that they would like to have this information provided by
8. their physician. With that said, one-third of patients in the study did not want to know, and this is
a significant enough number to suggest that not everyone is prepared to live with such
devastating news.
Having considered both the patient and the physician, it behooves us to also include the
feelings of the family members in the receiving of the diagnosis. It would be remiss to assume
that such news will not impact them, as it is this group of people who must determine in what
ways, if any, they are willing or able to assist the individual. According to Marzanski (2000) the
majority of dementia suffers’ relatives do not want the patient to be told his or her diagnosis, but
they themselves state that they would want to be told the truth if they had the disorder. This
appears to be the first act of role-reversal, inasmuch as they are attempting to protect the loved
one (as you would a child) from a frightening situation by instead bearing the burden themselves
(as a parent would do). Conversely, another reason we are tempted to lie is in order to
manipulate others into making choices we think appropriate, in which case we may be interfering
with their right to self-determination (Jackson, 1993). It is for this reason, that the physician must
closely evaluate the decision to honor wishes of the caregiver over those of the patient.
It cannot be forgotten that such knowledge for the children of the individual also brings
an additional question of angst: Am I going to acquire Alzheimer’s? Genetic testing is available
to individuals concerned with the inheritance of mutations which cause Alzheimer’s. With
regards to the genetic component of Alzheimer’s, there are two types of genes (causative and
susceptibility) that play a role in the risk of developing the disease. Causative genes are
autosomal dominant, giving the child of an affected parent a 50% chance of inheriting the gene.
Furthermore, inheriting one copy of the mutated gene is all that is required to develop the
disease. Susceptibility genes are unique in that they increase the chance of a person developing
9. Alzheimer’s. Though they are not sufficient alone to cause the disease, they do account for more
of the genetic risk for acquiring it (Gatz, 2007).
Alas we find ourselves, patient, family, and doctor, sitting in the physician’s office,
awaiting the news. How might the autonomy and personhood of the individual best be protected
at this first of many crossroads? I would suggest the use of benevolent paternalism. Benevolent
paternalism is generally considered inappropriate in modern society, where the standard for
patient-doctor relationships is now more akin to a meeting of equals than that of a parent-child
relationship. However, some aspects of paternalism may still be considered as elements of good
patient care. It allows the physician to use strategies to disclose the findings in such a way that
the patient has time to grieve the losses that he or she must certainly fear, a process referred to as
“holding” the patient. A reliable, empathetic relationship with a provider may afford patients
and their families an environment in which they feel empowered while adjusting to and coping
with a life which now includes a life-altering diagnosis (Nessa & Malterud, 1998).
Competency, Guardianship, Advanced Directives and Autonomy
Sadly, once a diagnosis is given, so is the accompanying stigma attached. Any decision
made or act performed by the individual is called into question. It seems that everyone becomes
judge and jury, issuing a verdict on the competency of the person diagnosed, both consciously
and unconsciously stripping them of their autonomy and personhood. However, before we attack
the masses, we must recognize that different groups subscribe to different definitions in terms.
Albeit ever so slightly in some cases, this can result in much different outcomes for the
individual in question. To elucidate this point we look at the differences found between the
medical and the psychiatric communities.
10. The World Health Organization defines dementia as a spectrum of chronic progressive
disorders that produce psychosocial or occupational impairment due to the compromise of higher
cortical functioning within one or more of the following domains: memory, thinking, orientation,
comprehension, calculation, learning capacity, language and judgment. The American
Psychiatric Association’s definition differs, yet similarities exist. Dementia is characterized as a
significant decline in social and occupational functioning due to memory impairment with one or
more of the following associated disturbances: aphasia, apraxia, agnosia, or dysexecutive
disorder (Reilly, Rodrigues, Lamy, & Neils-Strunjas, 2010).
Competency and decision making capacity (DMC) are terms often used interchangeably
in the medical setting. However, not everyone, even within the medical arena assesses the two in
the same manner. This tendency is well developed by the work of Schneider and Bramstedt in
their 2006 single case study in which a bioethicist and a psychiatrist reached much different
conclusions during the evaluation on one gentleman. In determining an individual’s decision
making capacity, the bioethicist asks: 1) does the patient understand the medical condition; 2)
does the patient understand the risks and benefits of the proposed interventions; 3) does the
patient understand the consequences of refusing the proposed intervention; 4) can the patient
weigh the burdens and benefits of each proposed intervention; 5) does the patient understand the
concept of life-saving interventions; and 6) can the patient express his or her health care values?
Conversely, the psychiatrist administers a Mini-Mental Status Examination and asks: 1) is the
patient a danger to self or others; 2) can the patient manage activities of daily living; and 3) is the
patient holdable under state mental health law?
As applied to the individual diagnosed with Alzheimer’s disease, the bioethicist’s
determination seems to be significant only with regards to medical decision making, whereas the
11. approach used by the psychiatrist can be applied to global decision making. This does not
however, mean that the patient is incompetent overall, thus perhaps modifications should be
made when applying the definition. For example, perhaps the individual is a “danger to
themselves or others” if living in the community, but does this apply if living in a secured
environment? Once in that secured environment, should not a different assessment be used to
determine “modified” DMC? Certainly it is not safe to drink bleach, however if only safe options
are presented, should the individual not be afforded the decision of what he or she chooses to
drink? This may appear to some to be a trite choice, but when one is faced with the eventuality of
losing all choices, even the simplest of things can assist one in maintaining autonomy and
personhood. Likewise, with the assessment of the ability to perform activities of daily living,
even though the individual may not remember in and of themselves to bathe, that should not
necessarily imply that once appropriate verbal cuing is offered, that the individual cannot
perform the task independently.
Traditionally, the notion of autonomy describes a free and independent individual;
autonomy is a sort of mental competence that determines both our inner state and our outward
behavior, as such, it has a close relationship to mental health. Within the realm of ethics, being
autonomous has been defined as having and freely actualizing a capacity for making one’s own
choices, managing one’s own affairs, and assuming responsibility for one’s own life. Autonomy
as a “right” presupposes a mental competence to “act” autonomously (Nessa & Malterud, 1998).
Again, it must be remembered that Alzheimer’s is not equivalent to sudden brain death, it is a
progressive disease and caregivers must be vigilant in allowing and empowering the individual
to continue making decisions.
12. The desire to promote autonomy is not to be equated with a Pollyanna attitude that
dismisses the true cognitive destruction that accompanies Alzheimer’s disease. Fiduciary
matters, requiring higher levels of cognitive functioning must be addressed. Society bears the
responsibility of protecting an incompetent person from acting against his or her best interest
while at the same time respecting the patient’s own choice and autonomy. It is at this point that
the next dilemma is presented, that of choosing a trusted person to act on one’s behalf. Ideally,
this matter was resolved at the onset of diagnosis, however that is not always the case. Legal
capacity refers to the individual’s ability to make certain legal decisions and to perform legal
actions. Dementing illness causes a deterioration in the ability to manage financial affairs and to
make other critical decisions. Deterioration must be assessed in relationships to the particular
decision an individual purports to make. If a person does not appoint their own power of
attorney, a guardianship appointment may become necessary. Most guardianship orders are
issued for elderly people with dementia. Unlike the 1940’s process discussed at the beginning of
this paper, doctors are usually expected to initiate discussions concerning guardianship measures,
including topics such as financial management, living arrangements, and healthcare decisions.
The appointment of a guardian today always requires a physician’s statement, as well as a
thorough assessment of the risks for both the patient and the environment. In nursing homes,
decision making incapacity is common (44-69%) and court appointed guardians are also
common (23.6%) (Raivio, Maki-Petaja-Leinonen, Laakkonen, Tilvis, & Pitkala, 2008).
Ruholl (1992) offers a perspective of the battle faced by family members, who must
weigh autonomy with their role as guardian. She explains that our culture has come to value
autonomy and independence so highly that the right of elders to choose is the rallying cry of
reformers who call for a “clearly conveyed willingness to accede to an elderly consumer’s
13. decisions, even if foolish or risky”. Legal guardianship is one process recently targeted as an
absolute barrier to empowerment of the elderly. Stressed family members may be less inclined to
accept guardianship, leaving the impaired elder to an uncertain and unloving fate. Taking over
another’s life can be a painful responsibility, one that many people understandably are reluctant
to shoulder. Yet guardianship may be the only way to ensure that a loved one is safe and secure
and receiving the care he or she needs. Thus begins the dilemma of walking the fine line between
safeguarding the individual while at the same time respecting his or her autonomy.
Modern Perspectives on Autonomy
Is it right to assume that dementia destroys the person as it destroys the brain? When
Alzheimer’s is diagnosed, reliance on others grows exponentially. Independence turns to
codependency, yielding finally to complete dependency on those around the person with
dementia, to act as surrogates in interpreting and communicating that which comprises his or her
unique identity. According to Murray and Boyd, persons with dementia are faced with the task of
having realistic expectations for the future and maintaining a sense of self and continuity. To
maintain our socially presented self, the cooperation of others must be enlisted. It is clear that
interactions with others can positively or negatively affect the ability of the individual to
maintain and communicate their sense of self (Murray & Boyd, 2009). How is it possible for
others to provide the cooperation necessary to promote the maintenance of the socially presented
self? Furthermore, how can others manage the task of interpreting and communicating the
identity of the person with dementia when it is no longer possible for the individual to
accomplish this independently? These goals come only to fruition when we evaluate the
individuals beliefs, values and life managing techniques prior to diagnosis and subsequently use
this knowledge to decode their behaviors and actions, acting upon them accordingly, and then
14. monitoring the outcome to determine the accuracy of our summation, making ongoing
adjustments as needed.
Dworkin suggests we should respect “precedent autonomy”, which is predicated on the
view, that personal identity survives dementia: “if we cannot respect a demented person’s
autonomy now, we can respect the autonomous decisions arrived at before the dementia”
(Hughes, 2001). Dworkin is correct in his assessment. The fact that we cannot easily peer into
the internal dialogue of the individual with Alzheimer’s should in no way suggest that one does
not exist. We traditionally recognize personhood in part, through an individual’s ability to
outwardly articulate that personhood. What we are now realizing is that in fact, the individual,
though unable to effectively communicate in a traditional manner does still attempt to engage the
outside world. By employing the concept of precedent autonomy, we may be able to decipher
that which is being communicated now. Furthermore, if we seek out significant others from the
individual’s past, we may glean a picture of the person as he or she was prior to diagnosis. This
endeavor will surely help us to better anticipate and meet the needs of the individual more
accurately. “Personhood can only be guaranteed, replenished and sustained through what others
provide.” (Kitwood, 1993)
What is truly being discussed here is the continuation of simple respect for the individual
as a human being. In modern bioethics, Singer distinguished two meanings of human beings –
one, a member of the species homo sapiens…without regard to their degree of maturity of decay
and two, a being who possesses certain qualities such as “self-awareness, self-control, a sense of
future, a sense of the past, the capacity to relate to others, concern for others, communication and
curiosity” and that only human beings in the second sense are deserving of rights and respect
(Fu-Chang Tsai, 2001). This distinction is far too extreme. All human beings should be afforded
15. rights and respect, regardless of their ability to demand such. Singer’s laundry list of preferred
qualities, potentially ostracizes not only individuals with dementia, but also those with autism,
amnesia, and a full panacea of psychiatric disorders. The person with dementia does possess
these qualities to varying degrees in the early to mid-stages and it is our role to affirm and
reassure the individual that this is recognized and that they are being heard. To respect others’
autonomy requires that we make consent possible for them, taking account of whatever partial
autonomy they have. All autonomy implies adequate autonomy in human interactions, namely to
be respected by others (Nessa & Malterud, 1998).
The antithesis of Singer’s view is put forth by Kitwood, who believes the dementia
sufferer is viewed as a person in the fullest possible sense; he or she is still an agent, one who
can make things happen in the world, a sentient, relational and historical being. This has led to a
new way of conceptualizing dementing conditions (Kitwood, 1993). Kitwood made this
declaration over two decades ago, yet it continues to be the timely and appropriate view. The
diagnosis of Alzheimer’s may mitigate, but in no way eliminates a person’s participation in life.
Though the mechanics of engagement may seem foreign to the onlooker, persons with dementia
continue to exist. It may appear that they are merely existing, however they feel, share and
interact with the world around them all the same. Again it is we who must seek to find a way into
their existence through remembering that they, like all individuals continue to have needs.
Kitwood (1997) defines a need as “that without which a human being cannot function, even
minimally, as a person”. These needs are: attachment (bonds that create a safety net); comfort
(tenderness, closeness, and calming of anxiety); identity (maintaining a sense of continuity with
the past and consistency across the course of present life); occupation (involvement in the
process of life in a way that is personally significant); inclusion (a group to belong to); and love.
16. Our strides in medical knowledge and technology yield both blessings and curses. As
society ages, so too does the instance of Alzheimer’s increase. We clearly find ourselves at a
more informed and humane place than that of the 1940’s. The frail and confused elderly are no
longer sentenced to asylums and assessed with the same diagnostic criteria as the chronically
mental ill. In home services, adult day centers and a wide variety of specialized long term care
facilities now exist to provide for changing needs over the course of the disease process and to
attempt to lighten the emotional burden surely felt by families and other caregivers. Though
there are many challenges that come with such a devastating diagnosis, trends in our view and
treatment of person’s with dementia are evolving as well. However this area is also the one of
greatest need in the future. Continued development of appropriate assessment measures and
implementation of approaches to assist the individual with maintaining autonomy and
personhood demand our ongoing attention if we are to ensure the highest quality of life possible
for these deserving individuals. With this in mind, we must remember that, “whatever ruin and
chaos there is within the psyche, the human context will still provide enough love and stability to
make life livable” (Kitwood, 1993).
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