Abstract
Renee Beard’s recent book on receiving a diagnosis of Alzheimer’s disease (AD) and adapting to this news, from the perspective of potential patients, potential care providers, clinicians, and Alzheimer Association staff, is a welcome addition to critical social science literature on dementia. This exceptionally well researched and written book builds on seminal works by fellow North American sociologists on the social construction of AD and the increasing number of illness narratives by persons living with dementia. This book will be accessible to those unfamiliar with the history of AD and contemporary clinical encounters and extremely useful to those who have been immersed in the field for a long time. That is, it serves as both an introduction to the field of dementia studies and medical sociology and extends efforts to enable those living with memory loss to continue to live meaningful lives.
Seeking to develop a theory related to the biomedicalization of memory loss and the sociology of illness narratives, Beard conducted participant observation, in-depth interviews, and focus groups in two American clinics responsible for diagnosing and managing memory loss (“the Brain Clinic” and “the Health Centre”) between 2002 and 2009 and monitored websites of the Alzheimer’s Association and self-advocacy groups like Dementia Awareness Society International, for example. Beard’s research was informed by symbolic interactionism and phenomenology and utilized the constant comparative method of data analysis associated with grounded theory.
Extremely rich in ethnographic data, the eight chapters trace the evolution of AD as a disease category and social phenomenon and the individual and collective experience of becoming an AD patient, “uncovering the social process through which forgetful older members of society are transformed into Alzheimer’s patients” (p. 9). The book begins with an evocative description of a clinical encounter drawn from the author’s field notes that suggests that the prospective patient will be treated as a person (not a patient) and that their lived reality will be central. This certainly plays out throughout the book, which is unsurprising given Beard’s earlier work on subjective experiences of and self-advocacy by persons living with AD.
While I highly recommend reading the book from start to finish, the chapter on History and Technoscience stands alone as one of the most accessible and comprehensive reviews of the societal shift from viewing memory loss in later life as “senility” to diagnosing memory loss and related symptoms as “Alzheimer’s” and later creating the other new disease category of “mild cognitive impairment,” in essence the biomedicalization of memory loss. Importantly, Beard found in her research that the degree of acceptance of biomedical ideology varied, with some potential patients countering it. The author also offers a cogent critique of the role of caregivers (as primary) and patients (as secondary) within the Alzheimer Association and denotes the limitations this has posed for advocacy by and on behalf of those living with AD, making reference to Max Weber’s “iron cage.” This is one example of how the book is steeped in sociological theory; thus, it will be of particular interest to social work academics and practitioners with a background in sociology.
Very little attention has been paid to gender and dementia, in spite of the fact that more women than men are living with cognitive impairment and women comprise the majority of both informal and formal care providers. Thus, this book is highly relevant to the readers of Affilia, irrespective of the fact that it does not include an explicit gender or feminist analysis. The potential patient sample included more men than women, as did the clinician sample, and the author notes that the former is not representative of the older adult population. Beard’s finding that “both sites employed unequivocal impairment and decline as justification for the management of patients who otherwise might not abide by the appropriate rules of conduct” (p. 74) would appear to hold particular significance for women (and transgender people) who are more often judged as unruly than are (cisgender) men, yet this is not taken up by the author. This is the only limitation of the book and does not detract from its usefulness. It will be a valuable resource for researchers, practitioners, and educators in the field of aging, health care, and social work and certainly lends support as well as offering up a challenge to those working on “academic narratives of resistance” (p. 231), including feminist scholars.