Abstract
How does age-related memory loss get redefined as Alzheimer’s disease? What are the consequences of such a transition for the care older adults receive? How does this diagnosis shape identity? In Living with Alzheimer’s: Managing Memory Loss, Identity, and Illness, Renée L. Beard challenges the biomedical model of Alzheimer’s disease and highlights how forgetful older adults renegotiate identities as competent people after diagnosis. The book is based on ethnographic data collected from two memory clinics as well as interviews with individuals living with Alzheimer’s, their family members, and executive members of the Alzheimer’s Association. It is a fairly comprehensive look at the medicalization of memory loss, and it rather boldly forces readers to reconsider common assumptions about Alzheimer’s disease.
In the first chapter, Beard makes the book’s main argument that “seniors are socialized by medical structures and the mass media into seeing their forgetfulness as symptoms of a disease” (p.9). Then the author traces the history of how memory loss came to be seen as Alzheimer’s disease. The books’ critique centers largely on the inherent uncertainty of Alzheimer’s, which can only be diagnosed definitively upon autopsy. It highlights scientific disagreements about the causes of Alzheimer’s disease, suggesting there is no scientific consensus on the matter. The author shows how Alzheimer’s represents a classic case of medicalization by means of diagnostic expansion, as the boundaries of the disease have grown to include more people and a wider range of memory loss.
Chapters Three and Four come from data collected at two memory clinics, one more focused on neurological testing and diagnosis and the other more attentive to helping individuals after their diagnosis. Even though the two clinics had some differences in their approach, their diagnostic processes were strikingly similar. In both clinics, “forgetful individuals become patients through mechanisms of technoscience” (p.51). The clinics assume patients are incompetent and diagnostic tests are objective measures of Alzheimer’s disease, leading to rampant overdiagnosis. Since Alzheimer’s is a diagnosis of exclusion, Beard contends that diagnosis is fundamentally a social process shaped by prevailing biomedical narratives. The book then turns to the experiences of “potential patients” as they go through the diagnostic process at the clinics, which the author likens to a degradation ceremony. Beard points out, for example, how the unusual environment in which the cognitive tests for memory loss took place disoriented potential patients and suggests that regardless of whether individuals were subsequently diagnosed, the experience was dehumanizing.
Chapters Five and Six turn to the social transformation of becoming an Alzheimer’s patient. Critical turning points, or status passages, are key moments in the redefinition of the self from healthy to sick. The author argues this process is shaped by interactions with biomedicine and the presumed incompetence of patients. The study participants construct illness narratives as they adjust to the “new normal” of being diagnosed. While they felt socially disenfranchised as a result of their diagnosis, the author argues they also continually renegotiated their identities as competent people. The key theme here is that individuals labeled with Alzheimer’s have agency over the terms of their diagnosis and its impact on their identity.
Chapter Seven makes a particularly interesting argument about the role of the Alzheimer’s Association in promulgating the biomedical narrative as well as reinforcing negative social constructions of individuals living with Alzheimer’s. Beard shows how in its dual focus on finding a cure and providing support services, the organization has managed to curiously overlook the perspectives of those who have the disease. The association, the author argues, has not done enough to incorporate the voices of people with Alzheimer’s disease. On this point, Beard concludes, “biomedical ideals are so deeply ingrained within the Association that they serve as an iron cage whereby they become the ends in themselves” (p.211). Beard contends the association should do more to promote the interests of people living with Alzheimer’s.
A great strength of this book is that we get to hear directly from individuals who have been diagnosed. Far too much research on Alzheimer’s disease excludes these voices. Another strength of the book is its comprehensive account of the players involved in diagnosing Alzheimer’s. We hear from care workers in the clinics who put the biomedical narrative into action, from those who have been diagnosed and their loved ones, and from those who represent associations purporting to represent the interests of the diagnosed. However, the heavy-handed approach of the author may turn off some readers. The repeated characterizations of people with age-related memory loss as “potential patients” with “alleged symptoms” who take “allegedly objective tests” so clinicians can “construct facts” for a disease that may nor may not be “real” was distracting. Furthermore, I think the author overstates the extent of scientific disagreement about Alzheimer’s disease and the invalidity of cognitive tests to measure memory loss in order to provide a more firm foundation for the argument that follows.
Nevertheless, this book fits very well within the sociological research on medicalization of behavior once perceived as normal. It shows convincingly that Alzheimer’s disease fits the classic definition of diagnostic expansion, while highlighting how diagnosed individuals craft narrative identities that resist diagnosis as much as they are shaped by it. This book will be useful for faculty teaching courses on aging or medical sociology. It is appropriate for graduate seminars and perhaps some upper-level undergraduate courses. Some chapters, particularly Chapter Two, are also a good source for lecture notes on medicalization and how memory loss has been medicalized into Alzheimer’s disease.