The Alzheimer Conundrum: Entanglements of Dementia and Aging by Margaret Lock (review)

The Alzheimer Conundrum is a provocative account of why Alzheimer’s disease (AD) is such a puzzling mix of scientific hypotheses, research agendas, pharmaceutical interests, funding objectives, and theories of aging. Indeed, the idea that AD is a singular disease is called into question given the uncertainty of its causes, diagnoses, treatments, prevention, and possible cure. Hence the book’s frequent use of “entanglement” to characterize the relationships between aging brains, bodies, individuals, and populations within the AD community is apposite. Author Margaret Lock asks us to rethink AD in three bold ways. First, we should focus more on how social and environmental factors, particularly poverty and social inequality, affect cognitive health. Second, care must be a research priority so that the investments poured into high-tech screening and treatment are shared with funding public health programs that improve the lives of older people. Third, the cruel depictions of AD and dementia encapsulated by popular metaphors of being “robbed” of personhood should be contested and AD included, rather than isolated, as part of our collective humanity. For people diagnosed with AD or the risk of it, their world is infused with the intense stigma, shame, isolation, and burden usually reserved for our most troublesome citizens. The Alzheimer Conundrum elaborates these issues in nine main chapters that organize the growing interdisciplinary literature stemming from genetics, epidemiology, neuropathology and gerontology, along with the results of eighty interviews with experts in the dementia field and Lock’s qualitative work with subjects from the REVEAL survey (Risk Evaluation and Education of Alzheimer’s Disease Study). The book’s twenty-nine pages of endnotes add a wealth of additional sources and ideas.

A main theme of the book is that since the death in 1906 of Auguste Deter, considered the first AD patient, the mystery of AD has been about matching hypotheses to evidence. The current hypothesis is that amyloid buildup is correlated with neurodegeneration; hence identifying amyloid deposits is a key component of prevention strategy, especially biomarker testing. As well, since the APOE gene has been associated with inherited AD, genetic screening is another aspect of prevention strategy. On the evidence side, however, the standard medical model is confounded by cases of people with amyloid buildup and neurodegeneration in their brains, yet who exhibit no symptoms of AD or dementia. There are also people who have tested positive for proven risk of AD or who have been diagnosed with a predementia stage such as mild cognitive impairment, but do not progress to develop AD.

Lock reminds us that ethical questions are a profound issue in AD research because of the ways in which samples and trials are created and participants are treated. Given the fear and anxiety that come with any diagnosis of AD or its risks, we need to ask how people should be informed and what kinds of follow-up surveillance are reasonable. The gathering of good AD data also requires long-term commitments of public trust even if effective treatment is not available. A fascinating case reviewed in the book is the so-called paisa mutation (presenilin-1 gene mutation) among a group of people in Medellín, Colombia, where AD is widespread in younger and older cohorts. The population has become an ideal genetic laboratory for Eric Reiman and his team from the Banner Alzheimer’s Institute (Phoenix, Ariz.), who are pursuing on-site research, but it is also an example of further ethical dilemmas that can arise when North American big science imposes upon poor Third World communities.

In the end, The Alzheimer Conundrum is a timely critique of the disease model and its cultural consequences. The book’s appeal is that it takes readers beyond scientific fields to consider social, historical, and cross-cultural dimensions of AD that broaden conceptual debates about mind and body, nature and nurture, and normal and pathological. One quibble is that several of the thinkers upon whom...