Living with Alzheimer's: Managing Memory Loss, Identity, and Illness

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.