Renée L. Beard

 

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

Cover Interview of February 08, 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.