Books

Margaret Lock’s The Alzheimer Conundrum

The Alzheimer Conundrum: Entanglements of Dementia and Aging

by Margaret Lock

Princeton University Press, 2013. 
328 pages, US $29.95 (Cloth)

 

Margaret Lock’s The Alzheimer Conundrum: Entanglements of Dementia and Aging is a welcome addition to a body of work that has so productively explored the historical contingencies, cultural specificities, and philosophical dilemmas that surround and shape bodies and people’s understandings and inhabitances of them. Taking Alzheimer’s disease (AD) as her object of study in this newest work, Lock presents us—in contrast to much popular writing about Alzheimer’s disease, which follows the stylistic and narrative trappings of the horror genre (Taylor 2008)—with a mystery. It starts from two questions that have plagued twentieth century biomedicine: What is meant by Alzheimer disease? And, is AD an inevitability of “normal” aging, or a “bona fide neuropathological disease, entirely different from aging” (47)? Across the book, we follow a loosely linked, global collective of white-coat-clad protagonists in search of an Alzheimer disease, a construct which throughout remains obstinately fractured and leaky. AD is “a phenomenon where…aside from the contribution of aging itself, causation is undeniably complex and remains, for all intents and purposes, unknown” (11, 7). With causation little understood, a cure remains an elusive dream. (As one Montreal-based practitioner notes in the midst of his rationale for not giving person a diagnosis of Alzheimer disease, “So far all we’ve really got to offer are platitudes, more or less” (58).) Given this, as Lock rigorously traces, an ongoing shift is afoot among the scientific and medical community from a search for an Alzheimer’s cure to its prevention. This switch to prevention attempts to move the ontological questions of what AD is farther upstream, to a point in a person’s life course before she exhibits AD’s clinical phenotype. Such a strategy entails the search for a molecularized AD, one that can be identified by biomarkers alone, years before its symptomatic presentation––one that seeks divinatory answers in people’s genes. Throughout this narrative, we see threads of Lock’s earlier interests drawn neatly through: first, in the ways that particular aging experiences, through social production, are seemingly fixed as biological “reality,” and second, in the often imperfect alignment between brains, minds, and selves as objects of scientific inquiry and intervention. Here, these topics are reinvigorated as Lock delves into the complex ambiguity of the phenomenon of Alzheimer’s disease.

The narrative of The Alzheimer Conundrum is loosely organized into two parts that together detail the struggle to cohere AD as a stable, locatable disease object. After an introduction entitled “Orientations” (a provocative title as one of the key clinical symptoms of dementia is a person’s spatiotemporal disorientation as marked by their improper responses to cognitive testing questions such as “What day is today?” and “What city are we in?”)[1], the first section (Chapters 1 through 4) constructs a history of this struggle. Moving from Alois Alzheimer’s discovery of the disease in the early twentieth century through the challenges researchers and activists have faced over the past fifty years to standardize a diagnosis of AD to the recent shift toward molecularization, Lock demonstrates the Sisyphean nature of the task to delineate “normal” from pathological aging, in doing so “mak[ing] it clear that the ontological status of AD is open to debate” (22). The second half of the book examines this emergent focus on a “prodromal” (or pre-symptomatic) AD as the disease object that, in the ideal imaginary, will finally act as a target for biomedical intervention. Researchers, funding agencies, and activist organizations look to the genetics of AD for their answers, seeking patterns of susceptibility and risk that will only come to bear pathological “fruit” decades on. As they push earlier and earlier in the life course, Lock argues, they create new, often troubling relations between bodies, aging, and disease.

From the book’s opening pages, the politicization of Alzheimer disease is evident. None of Lock’s informants are under any illusion that their research exists in some mythologically isolated domain of biomedicine; rather, they appear intensely aware of the imbrication between a medical project to treat individual bodies experiencing what they feel are the pathological effects of aging and the political project to maintain a healthily aging population, devoid of the effects of that aging and continually engaged and productive. As one example, in the first chapter Lock explicates the resurgence and consolidation of AD as a disease entity that took place across the latter half of the century. Between the twinned foundings of the National Institute of Aging and the Alzheimer Disease and Related Disorders Association (now, telling, the Alzheimer’s Association) in the United States, one informant tells Lock that such consolidation “was just a political maneuver to get funding, and some people actually came to believe that this is the case” (41). Time and again, as the reader learns of attempts to reclassify AD (and the ways this reclassification plays out differently in the US and Europe) (Chapter 3 and 4), or the international alliance to study a group of people in Antioguia, Columbia, who have a uniquely high incidence of autosomal dominant mutation that leads to early-onset dementia (Chapter 5), or the global effort in genome-wide association (GWA) studies (Chapter 6), the political influences upon epistemological projects within medical science are made clear.

While The Alzheimer Conundrum is primarily a work interested in the production, disruption, and reformulation of expert knowledge, Lock also traces that knowledge into lay circles, exploring the ways that expert understandings of AD are taken up by families. In Chapter 7, entitled “Living with Embodied Omens,” she presents findings from a qualitative portion she conducted as part of a multi-sited, longitudinal quantitative study in the United States, which was “designed to assess ‘feasibility, safety, psychological impacts, and behavioral outcomes of APOE genetic testing disclosure” (181). Interviews were conducted with research participants who had received their genotype results, as Lock and her research team sought to explore a possible looping effect between “genetic disclosure and a transformation in subjectivity” (179). What kinds of risk calculations do families engage in, and what information becomes meaningful as they do so? While biomedical researchers debate the effects of revealing such information to people—information often collected during clinical trials—Lock’s informants paint a portrait of the meaningfulness of biomedical information that stands in stark contrast to the foreclosure of a future that anxious researchers imagine. As the presentation of people’s reactions to and understandings of their results illuminate, genetic information most frequently is integrated with lay understandings of family history, heredity, and personal risk. It becomes part of a longer narrative of a person’s historical and generational subjectivity, and its effect often tends toward the mundane. In a moment that reveals much, one participant says after learning their results, “Well, I know where I stand, and my children know where they stand—maybe get it, maybe not” (189).

At its heart, The Alzheimer Conundrum is a case history of uncertainty­­––uncertainty’s tidal power and biomedicine’s attempt to shore up understanding against it. The book is an exploration of the effects of the ever-increasing complexity of knowledge. Early on, Lock writes of her own coming to the project: “As I slowly began to grasp the labyrinthine convolutions associated with genes that contribute to complex conditions such as AD, it became increasingly apparent that a social science contribution was called for, one not confined to the genetics of AD, but that also addressed the phenomenon of AD itself” (2). Reading her book, I was reminded of an earlier contribution by the sociologist Jay Gubrium. In his Oldtimers and Alzheimer’s: The Descriptive Organization of Senility (1986), Gubrium presents one of the earliest social scientific analyses of Alzheimer’s disease. Published in the mid-1980s as Alzheimer’s disease was being pushed into national consciousness in the US, Gubrium sought to explain “how an existing unified understanding [of, in this instance, Alzheimer’s disease] is built up and sustained in the face of diversity on several fronts” (203). In his account, clinicians, activists, policymakers, and caregivers had to continually undertake descriptive work to create and sustain the construct of Alzheimer’s disease, a medicalized object that (through these descriptive acts) appeared to lie firmly on the pathological side of a fence, ideally kept far away from something else called “normal aging.” Both books offer their own detailed portraits of how scientific and medical communities deal with ontological and epistemological uncertainty, yet taken together they present a telling diptych. While Gubrium’s book presents and analyzes a project of consolidation written while it was unfolding, Lock’s beautifully exposes the limits of such a unifying undertaking by casting it as the product of a historical moment, one which has not yet passed.

Aaron Seaman is a PhD candidate in the Department of Comparative Human Development at the University of Chicago. He is currently writing his dissertation, tentatively titled, “Good Care: Dementia, Caregiving, and the Making of Family.”

 

Works Cited:

Cohen, Lawrence. No Aging in India: Alzheimer’s, the Bad Family, and Other Modern Things. Berkeley, CA: University of California Press, 1998.

Gubrium, Jaber F. Oldtimers and Alzheimer’s: The Descriptive Organization of Senility. Greenwich, CT: Jai Press Inc., 1986.

Taylor, Janelle S. (2008.) “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly 22(4): 313-335.

Note:

[1] The metaphor has proven useful for situating anthropological works on senility before, as Cohen’s seminal work on aging and dementia, No Aging in India (1998), also had an opening “Orientations” chapter.


One Response to Margaret Lock’s The Alzheimer Conundrum

  1. Pingback: AAGE interview with anthropologist Margaret Lock | Association for Anthropology and Gerontology

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