On her book Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness
Cover Interview of February 07, 2017
The wide angle
I’ve always had an affinity for older people. My first job
as a teenager was working in a nursing home where I met a woman who had what
was then called “Oldtimers.” She was sequestered far away from the nurses’
station and all social spaces because staff and residents alike were convinced
that she was “not there.” My experiences told me otherwise and that has stayed
with me to this day. Through my undergraduate training, I was drawn to the
sociology of aging and followed it through to a Ph.D. in medical sociology.
This book is the logical conclusion of my doctoral research project translated
for readers beyond my own subspecialty, updated, and including a wider context. The
primary themes of the book are ageism and the medicalization of memory loss as
a specific example of how insidious ageism can be.
In the 1980s, Alzheimer’s disease went from an extremely
rare disease found in 50-year-olds to a leading cause of death for older people
and replaced what used to be a normal part of aging – senility (or Oldtimers). Since
then, the primary topic of interest has been diagnostic tools to identify AD earlier
and earlier and even before it is detectable by the average person. I argue
that this is an example of medicalization that has not worked particularly well
for affected parties. Over 100 years after first being described, we don’t know
what causes it or how to classify it, efficacious medications do not exist, and
a definitive diagnosis remains possible only upon autopsy.
The other primary theme is ageism. In a culture where people
are valued according to youthfulness, social interaction is challenging enough
for American seniors with keen memories. When strict normative expectations of
communication, interaction and “reality” are also present, then the status of
nonperson is ascribed to any individual who is deemed cognitively impaired.
What I am arguing is that we – the well-intended public – are the problem. Our
own cultural reticence translates too easily into individual unwillingness to
join people with dementia where they are. Since we are socialized to
believe dementia represents a particularly horrifying state, the biggest
barrier to a meaningful life in spite of Alzheimer’s is the fear of unimpaired
others. We would do well then, I believe, to learn from my respondents for whom
life – while decidedly more challenging – is far from over.
[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
The wide angle
I’ve always had an affinity for older people. My first job as a teenager was working in a nursing home where I met a woman who had what was then called “Oldtimers.” She was sequestered far away from the nurses’ station and all social spaces because staff and residents alike were convinced that she was “not there.” My experiences told me otherwise and that has stayed with me to this day. Through my undergraduate training, I was drawn to the sociology of aging and followed it through to a Ph.D. in medical sociology. This book is the logical conclusion of my doctoral research project translated for readers beyond my own subspecialty, updated, and including a wider context. The primary themes of the book are ageism and the medicalization of memory loss as a specific example of how insidious ageism can be.
In the 1980s, Alzheimer’s disease went from an extremely rare disease found in 50-year-olds to a leading cause of death for older people and replaced what used to be a normal part of aging – senility (or Oldtimers). Since then, the primary topic of interest has been diagnostic tools to identify AD earlier and earlier and even before it is detectable by the average person. I argue that this is an example of medicalization that has not worked particularly well for affected parties. Over 100 years after first being described, we don’t know what causes it or how to classify it, efficacious medications do not exist, and a definitive diagnosis remains possible only upon autopsy.
The other primary theme is ageism. In a culture where people are valued according to youthfulness, social interaction is challenging enough for American seniors with keen memories. When strict normative expectations of communication, interaction and “reality” are also present, then the status of nonperson is ascribed to any individual who is deemed cognitively impaired. What I am arguing is that we – the well-intended public – are the problem. Our own cultural reticence translates too easily into individual unwillingness to join people with dementia where they are. Since we are socialized to believe dementia represents a particularly horrifying state, the biggest barrier to a meaningful life in spite of Alzheimer’s is the fear of unimpaired others. We would do well then, I believe, to learn from my respondents for whom life – while decidedly more challenging – is far from over.