Thinking about Dementia: Culture, Loss, and the Anthropology of Senility (review)

The dementias, especially Alzheimer's disease (AD), elicit anxiety and dread. They are often perceived as the end point of the aging process in a society that seems capable of accepting old age only if the person maintains many features associated with middle age, that is, be "not old."¹ Such cultural values reinforce the visceral fears about aging that resurface each time we forget a colleague's name or search for glasses that were just in our hands. For these and other reasons, I welcome Thinking about Dementia. The essays in this volume open a particular window on Alzheimer's disease that is historically revealing, clinically useful, and intellectually stimulating. In the remainder of this brief review, I can highlight only a few themes, but that is no reflection on the overall quality of the entire work.

Historian Jesse Ballenger importantly situates the conversation about Alzheimer's disease in the larger arena of aging. In contrast to other essays in the volume, he argues that AD is still stigmatized and "overshadow[s] the entire experience of aging" (p. 107). The fear, he suggests, that accompanies threats to the self and a coherent identity cannot be easily eliminated by the "facts" of the disease. In contrast, André Smith's subjects—all younger women—found the diagnosis of mental illness more stigmatizing than that of AD. AD was a "real" neurological disease, an acceptable medical problem capable of explaining their symptoms. Is the stigma of dementia so closely linked to the "fallen" state of old age in which one has not aged "successfully" so that it provokes feelings of stigma that do not similarly affect younger women? In their very rich chapter on genomics and Alzheimer's, Lock, Lloyd, and Prest also mention the moral neutrality of Alzheimer's compared to mental illness. This chapter's focus, however, takes the reader in another, perhaps surprising, direction. Given the considerable attention now attributed to genetic links with even late-onset dementia (work on the gene APO4), these investigators found that neither clinicians nor adult children caring for a parent with AD paid much attention to genetics.

While not mentioning stigma, one can wonder if Kaufman's study of "Alzheimer's near death" and the troubles families encounter as they face decisions about life-extending treatment might also be linked to the ambiguous nature of AD: is it a disease or not, and, if not, what actions can be justified?

This collection's significant attention to personhood is an important effort to recover the strengths and potential of the person with AD. The "personhood" movement emerged in reaction to the almost single-minded focus on cognition and neurological changes in the brain that had so long dominated the dementia "industry." In Leibing's words, the "double gaze" of biomedicine and personhood reveal different people, and treatment as a reaction to one or the other of these perspectives elicits very different responses. Other writers, like Anne Basting and Pia Kontos, explore voice and how some coherence might be achieved through narrative, dramatic production, creative storytelling, and collaborative preservation of memory.

For many, AD is the fate worse than death. I recommend this book to health and social service providers and to family members who want to understand the unresolved dilemmas that this condition opens so that they may gain a sense of how we might integrate AD into our concept of what it means to be a person. History has certainly shown us the mutability of how AD has been understood medically, socially, and culturally. This book suggests that the final story has not yet been told. It also reminds us that, while a cure is not at hand, changes in...