Renée L. Beard

 

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

Cover Interview of February 08, 2017

Lastly

I want to increase awareness of the bare consequences of these particular examples of medicalization and ageism. I hope to give academics, practitioners, people with AD and their families – and all of us – a better idea of what life with AD is really like. It doesn’t need to be this way and I hope this book helps me do my small part in changing the way society treats people with AD. We lack a critique of contemporary memory-centeredness and the lived consequences of it. Such introspection has much to say about future improvements in the way people in general and the medical system in particular treat individuals with memory loss. By showing how experiences of dementia are larger than tales of tragedy can capture, I am questioning the very legitimacy of the Alzheimer’s Industrial Complex itself.

Those who are currently seniors and/or live with dementia – and all of us as we ourselves age – would be best served by removing our tendency to universalize all aging experiences. Such homogenizing in such a gendered, race-based and class-divided society is not only a mistake but tolerates neglect of the most deeply disenfranchised among us and ignores the need for meaningful change on the societal level. I see my book as an appeal to broader acceptance of difference, concerning experiences of aging and Alzheimer’s, but also in general. Diagnosed individuals fight hard to maintain a sense of social worth. If we are going to label people with AD earlier and earlier, then at the very least in recompense we should make sure that the social discourse as well as the infrastructure set up to serve them (both in the early phase but particularly in the later stages) be based upon their experiences, views and values with an appreciation for their unique social and relational contexts.

If we continue to proceed without caution, then we might destroy the precious little space within which we as modern humans can age meaningfully. My book offers a timely counterpoint. Through interrogating our societal horror of Alzheimer’s, and aging – dare I say death – more broadly and showing more accurate portrayals of life with the condition, I hope the counter-narrative offered in my data advances global, public and sociological understandings of what has been framed as the most dreaded disease of our time. If we want to bring some humanity to memory loss, then it would behoove us to remember what Mrs. W, a 72-year-old widow, told me a year after being diagnosed: “I’m still the same person I’ve always been. It’s just that now I’m me with Alzheimer’s.” And, at the end of the day, who among us would want to be seen any differently?