On her book Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness
Cover Interview of February 07, 2017
In a nutshell
Living with Alzheimer’s is about what it is like to
be evaluated, diagnosed, and to live with Alzheimer’s from the perspective of
those most directly affected. I talked primarily with seniors, people over 65,
who were in the early stages of Alzheimer’s disease (AD). Ultimately, this is a
story about living with Alzheimer’s; that is, how life continues long
after diagnosis.
Unfortunately, the majority of the challenges faced by the diagnosed
individuals I spoke with were caused by cultural blindness and intolerance in
contemporary US society. We have been socialized to mistrust people with
dementia and, thus, assume they are incapable of navigating their own lives. As
a result, we are reticent to meet them on their own terms and instead
try to change them to conform to our narrow expectations of social interactions
or outright dismiss them. This is based in a deep-seated ageism, the conflation
of our brains and personhood in the western world, and bias against those who
deviate from the normative expectations of social engagements and language.
My book draws on the narratives of those with memory loss
themselves, something heretofore largely neglected in book-length projects
within the social sciences and considered impossible in the public imagination.
My respondents depict a keen awareness of their struggles and an impressive ability
to manage their identities and interactions. Both of these are commonly assumed
impossible or at least severely diminished in those affected by AD. My book
also questions the utility and ethics of increasingly earlier diagnoses when
definitive diagnosis does not exist, efficacious medications are lacking, and
postmortem results suggest both false positives and negatives, that is, people
are diagnosed who do not have it and others have the brain pathology but were
never diagnosed.
Importantly, I also add to these first-person accounts the views
of practitioners at specialty memory clinics and staff from the Alzheimer’s
Association. The ability to triangulate rich data from the subjective
experiences of “patients” as well as clinicians and staff from the Association is
the foundation upon which I base my ultimate claim that AD is a social
artifact. I am in no way suggesting that Alzheimer’s is fake, but rather socially
constructed and/or created in specialty clinics and voluntary organizations by
well-intended actors who operate under the constraints of the organizational
norms and ethos where they work and live (as we all do).
I hope that people will read my book with a willingness to
put themselves in the shoes of the respondents I spoke with, especially those
living with Alzheimer’s, but also those professionals aiming to serve them. At
the end of the day, I would like readers to walk away with a better understanding
of our shared humanity in the plight of facing forgetfulness. If readers left
being able to imagine a life with Alzheimer’s that was still worth living and
better understood some of the complexities of diagnosing, treating and serving
the affected population, I would deem the book a success.
[T]he Holocaust transformed our whole way of thinking about war and heroism. War is no longer a proving ground for heroism in the same way it used to be. Instead, war now is something that we must avoid at all costs—because genocides often take place under the cover of war. We are no longer all potential soldiers (though we are that too), but we are all potential victims of the traumas war creates. This, at least, is one important development in the way Western populations envision war, even if it does not always predominate in the thinking of our political leaders.Carolyn J. Dean, Interview of February 01, 2011
The dominant premise in evolution and economics is that a person is being loyal to natural law if he or she attends to self’s interest and welfare before being concerned with the needs and demands of family or community. The public does not realize that this statement is not an established scientific principle but an ethical preference. Nonetheless, this belief has created a moral confusion among North Americans and Europeans because the evolution of our species was accompanied by the disposition to worry about kin and the collectives to which one belongs.Jerome Kagan, Interview of September 17, 2009
In a nutshell
Living with Alzheimer’s is about what it is like to be evaluated, diagnosed, and to live with Alzheimer’s from the perspective of those most directly affected. I talked primarily with seniors, people over 65, who were in the early stages of Alzheimer’s disease (AD). Ultimately, this is a story about living with Alzheimer’s; that is, how life continues long after diagnosis.
Unfortunately, the majority of the challenges faced by the diagnosed individuals I spoke with were caused by cultural blindness and intolerance in contemporary US society. We have been socialized to mistrust people with dementia and, thus, assume they are incapable of navigating their own lives. As a result, we are reticent to meet them on their own terms and instead try to change them to conform to our narrow expectations of social interactions or outright dismiss them. This is based in a deep-seated ageism, the conflation of our brains and personhood in the western world, and bias against those who deviate from the normative expectations of social engagements and language.
My book draws on the narratives of those with memory loss themselves, something heretofore largely neglected in book-length projects within the social sciences and considered impossible in the public imagination. My respondents depict a keen awareness of their struggles and an impressive ability to manage their identities and interactions. Both of these are commonly assumed impossible or at least severely diminished in those affected by AD. My book also questions the utility and ethics of increasingly earlier diagnoses when definitive diagnosis does not exist, efficacious medications are lacking, and postmortem results suggest both false positives and negatives, that is, people are diagnosed who do not have it and others have the brain pathology but were never diagnosed.
Importantly, I also add to these first-person accounts the views of practitioners at specialty memory clinics and staff from the Alzheimer’s Association. The ability to triangulate rich data from the subjective experiences of “patients” as well as clinicians and staff from the Association is the foundation upon which I base my ultimate claim that AD is a social artifact. I am in no way suggesting that Alzheimer’s is fake, but rather socially constructed and/or created in specialty clinics and voluntary organizations by well-intended actors who operate under the constraints of the organizational norms and ethos where they work and live (as we all do).
I hope that people will read my book with a willingness to put themselves in the shoes of the respondents I spoke with, especially those living with Alzheimer’s, but also those professionals aiming to serve them. At the end of the day, I would like readers to walk away with a better understanding of our shared humanity in the plight of facing forgetfulness. If readers left being able to imagine a life with Alzheimer’s that was still worth living and better understood some of the complexities of diagnosing, treating and serving the affected population, I would deem the book a success.