Living with Alzheimer's

News of Alzheimer’s disease is constantly in the headlines. Every day we hear heart-wrenching stories of people caring for a loved one who has become a shell of their former self, of projections about rising incidence rates, and of cures that are just around the corner. However, we don't see or hear from the people who actually have the disease. In Living with Alzheimer’s, Renée L. Beard argues that the exclusively negative portrayals of Alzheimer’s are grossly inaccurate. To understand what life with memory loss is really like, Beard draws on intensive observations of nearly 100 seniors undergoing cognitive evaluation, as well as post-diagnosis interviews with individuals experiencing late-in-life forgetfulness. Since we all forget sometimes, seniors with an Alzheimer’s diagnosis ultimately need to be socialized into medicalized interpretations of their forgetfulness. In daily life, people with the disease are forced to manage stigma and the presumption of incompetence on top of the actual symptoms of their ailment. The well-meaning public, and not their dementia, becomes the major barrier to a happy life for those affected.

Beard also examines how these perceptions affect treatment for Alzheimer’s. Interviews with clinicians and staff from the Alzheimer’s Association reveal that despite the best of intentions, pejorative framings of life with dementia fuel both clinical practice and advocacy efforts. These professionals perpetuate narratives about “self-loss,” “impending cures,” and the economic and emotional “burden” to families and society even if they do not personally believe them. Yet, Beard also concludes that in spite of these trends, most of the diagnosed individuals in her study achieve a graceful balance between accepting the medical label and resisting the social stigma that accompanies it. In stark contrast to the messages we receive, this book provides an unprecedented view into the ways that people with early Alzheimer’s actively and deliberately navigate their lives.

Renée L. Beard is Associate Professor of Sociology in the Department of Sociology and Anthropology at the College of the Holy Cross.

David Karp,author of Speaking of Sadness:
Based on an exceptional range of qualitative data, Living with Alzheimers brilliantly illuminates how a primarily biomedical approach to memory loss shapes the identities and experiences of millions of newly minted patients. Equally, Renée Beard alerts us to how counter-narratives can potentially liberate the marginalized voices of those dealing with questionable diagnoses of cognitive impairment. Finely organized and conceptually rich, this book should be standard reading for anyone puzzling through the confounding distinction between normal aging and pathological forgetfulness.

Living with Alzheimers is an important empirical contribution to illness narratives about people with memory problems or experiencing forgetfulness. I highly recommend it to scholars interested in the sociology of diagnosis, social studies of dementia, and the sociology of ageing.

Provides an insightful, compelling and timely understanding into the lives of people with memory problems living in a society where cognitive function is still implicitly connected to how we articulate our place in the world . . . highly recommend to scholars interested in the sociology of diagnosis, social studies of dementia, and the sociology of ageing."An exemplary study, important for the sociologies of health and illness, social movements, disability studies, aging, and identity formation

An intriguing examination of an important health issue...[I]nformed general readers will find it useful.