Renée L. Beard

 

On her book Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness

Cover Interview of February 08, 2017

A close-up

I think the prologue does a particularly good job of depicting why people seek evaluation, how they feel during it, and most crucially, what can go wrong in the delivery of the diagnosis. While this example was an outlier in terms of the clinical approach depicted, it is an important lesson for all of us. Despite the best intentions, both clinicians and Association staff often act in ways that are not in the best interest of people seeking evaluation or diagnosed with AD.

I am torn between two sections, both being most important to get across: the grueling and dehumanizing experiences of being evaluated (chapter 4) or the more positive account of how people ultimately resist being conflated with their diagnosis (chapter 5). Being evaluated is troublesome for what I call “potential patients” because they are deemed suspect by the very act of seeking evaluation. Yet, so many of my respondents did so simply to get “a baseline” or be told that their forgetfulness was normal or “age-related.” This presumed incompetence was disturbing and distracting for respondents, who felt the cognitive workup amounted to a “degradation ceremony” whereby they were left “socially demoted” essentially upon receipt of the diagnosis. After the initial shock of diagnosis wore off, the reaction to the news was far less dramatic than we might believe it to be. Given their advanced age and shared positive outlook, the biggest barriers to a meaningful life with AD ended up being – in the views of my respondents – the assumptions that generally well-intended social others made of their inability to engage or find value in life any longer. So, on top of the biological realities of dementia, my respondents had the arduous task of also managing the impressions of everyone else, that is, fighting to be seen as “still there” and worthy of interaction rather than simply pitied and dismissed.

So, being diagnosed normalizes awkward behaviors and removes personal blame, which is great, but it also demands identity management to avoid the self-fulfilling prophesy of an Alzheimer’s diagnosis at a time when the “zombie trope” serves as a powerful cultural metaphor for the condition. Part of the problem is that we conflate AD with the late stages, when most diagnosed individuals will die of something else long before they forget to breathe and swallow. The vast majority of people diagnosed with AD do not die from it, and when you take false positives discovered upon autopsy into account, the numbers are even lower. So, while on average they do ultimately maintain meaning in their lives, they do so in spite of the obstacles we present them.

The reason I think these chapters are important is that I think they offer an important and much-needed counter-narrative to the pejorative social assumptions of “life with AD” and show the persistent humanity that I would hope elicits compassion in readers.