Thinking About Dementia: Culture, Loss and the Anthropology of Senility, edited by Annette Leibing & Lawrence Cohen (Piscataway, N.J.: Rutgers University Press, 2006); paperback, 299 pages; $24.95.

Self, Senility and Alzheimer’s Disease in Modern America: A History by Jesse F. Ballenger (Baltimore: Johns Hopkins University Press, 2006); hardback, 256 pages; $43.00.

Reviewed by Martha Holstein

Dementia, especially Alzheimer’s disease, elicits anxiety and dread. In a society reluctant to accept old age, Alzheimer’s represents a visible, radical rupture with the past. Particularly threatening is the belief that Alzheimer’s means the loss of a coherent, historically consistent self. Two recent books richly analyze how our understanding of Alzheimer’s disease is fluid, reflecting societal ideas about aging, health and illness, normalcy and dementia, and the unified and consistent self.

Thinking About Dementia: Culture, Loss and the Anthropology of Senility, a collection of essays edited by Annette Leibing and Lawrence Cohen, offers primarily postmodern accounts of self -- socially constructed, fragmented -- where the lines between the normal and the pathological are blurred. Jesse F. Ballenger’s Self, Senility and Alzheimer’s Disease in Modern America also focuses on understandings of the self, but does so from a cultural historian’s perspective. Together, the two books give the reader a vibrant and provocative account of how to think about Alzheimer’s disease in anything but settled or conventional terms.

Ballenger, both in his chapter in Thinking About Dementia and in Self, Senility and Alzheimer’s Disease, examines Alzheimer’s contextually, arguing that the disease is still stigmatized and “overshadow[s] the entire experience of aging.” The fear that accompanies threats to the self and a coherent identity cannot be easily eliminated given the disease’s manifestations.

Historically Revealing and Clinically Useful

The other essays in Thinking About Dementia likewise open a window on Alzheimer’s disease that is historically revealing, clinically useful and intellectually stimulating. For example, the subjects of Andre Smith’s research -- all younger women -- found the diagnosis of mental illness more stigmatizing than that of Alzheimer’s. Because Alzheimer’s is grounded in pathological changes in the brain, they considered it an acceptable medical explanation for their symptoms. Perhaps this signals that Alzheimer’s disease is experienced as a visceral concern only when seen within the context of old age, where the fear of loss is immediately present.

Sharon R. Kaufman’s essay, “Dementia-Near-Death and ‘Life Itself,’” raises contrasting questions. In her ethnographic work, she encountered troubled families who were trying to decide about life-extending treatment for relatives with Alzheimer’s. In addition to familiar problems that arise when life-and-death choices must be made, the ambiguous nature of the Alzheimer’s itself may deepen families’ uncertainties. Is the condition a disease? And, if not, what choices can caregivers justify? Seemingly resolved in the late 1960s and early 1970s, the disease status of Alzheimer’s continues to be contestable to historians like Ballenger and anthropologists like Kaufman. Such uncertainties further confuse family members burdened with making choices.

Leibing and Cohen’s contributors pay significant attention to another concern: the issue of personhood. Leibing notes that the personhood movement -- an important effort to rescue what strengths and potential the person with Alzheimer’s still has -- emerged in reaction to the almost single-minded focus in the “dementia industry” on cognition and neurological changes in the brain. She adds that the bifurcated gaze of biomedicine and personhood reveal different people when they focus on an individual with Alzheimer’s -- and that treatment reflecting one or the other of these perspectives elicits very different responses.

A Tradition-Shattering View

In his critical history of Alzheimer’s disease, Self, Senility and Alzheimer’s Disease, Ballenger likewise explores how conceptions of the self and of aging affect our understanding of Alzheimer’s. Many voices in the Leibing and Cohen collection represent a tradition-shattering view that there is not a sharp line between the ordinary fragmentation of contemporary life -- so-called postmodernity -- and the experiences of a person with Alzheimer’s. But I find myself quite sympathetic to Ballenger’s view that “there is a difference between having one’s cognitive abilities impaired to the degree that one cannot successfully perform expected social roles and experiencing confusion -- even extreme confusion -- because social roles that one successfully performs are contradictory and incoherent.”

History has certainly shown us how mutable medical, social and cultural understandings of Alzheimer’s have been. Both Thinking About Dementia and Self, Senility and Alzheimer’s Disease offer wise, sympathetic and complex analyses of the condition -- and both suggest that the final story is still unknown. They also remind us that while a cure is not at hand, changes in the healthcare system and reflections about the ethical implications of life for people with dementia hold the potential for making their lives better. For these reasons, I strongly recommend both books to healthcare professionals, social services providers and family members who want to understand the unresolved dilemmas this condition creates.

Martha Holstein is codirector of the Center for Long-Term Care of the Health and Medicine Policy Research Group, Chicago.

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