Book Review

The Moral Challenge of Alzheimer Disease

N Engl J Med 1996; 334:1204May 2, 1996

Article

The Moral Challenge of Alzheimer Disease
By Stephen G. Post. 142 pp. Baltimore, Johns Hopkins University Press, 1995. $29.95. ISBN: 0-8018-5174-2

Stephen Post's book on the bioethics of the care of those with dementia is not a dense academic tome so much as an extended conversation that touches on many issues that arise in the rendering of such care. Health professionals who deal with dementia, as well as family members who care for relatives who become disabled, will find the book thoughtful, engaging, and provocative.

The Moral Challenge of Alzheimer Disease expands on themes sketched in earlier books co-edited by the author, but here the voice is Stephen Post's. The book opens with an overview of the issues and an elaboration of its approach and main conclusions. Post opts for “discourse ethics,” a term for common sense leavened with robust direct experience that — ironically, in the case of dementia — must often rely on forms of communication beyond verbal discourse. Post has worked for several years with the Alzheimer's Research Center at Case Western Reserve University and has had close contact with the Cleveland chapter of the Alzheimer's Association. One of the most useful chapters of this book is entitled the “Fairhill Guidelines on Ethics and the Care of People with Alzheimer Disease,” the result of a systematic community-based process. The guidelines address diagnostic disclosure and truth-telling, how to deal with driving privileges, whether and when to respect the choices of those with dementia, behavior control, technological life support and treatment, and quality-of-life considerations — all topics treated in greater detail in other chapters. An additional chapter delves into the intricacies of genetic testing for Alzheimer's disease, especially susceptibility testing through apolipoprotein E genotyping, but also touches on autosomal dominant families afflicted with Alzheimer's disease. Science has moved quickly here, uncovering mutations on chromosomes 1 and 14 since the chapter was written.

Post attacks a strain of ethical analysis that premises moral obligations on memory and cognition. He argues that life with dementia is meaningful. Most of his rhetorical firepower is trained against those whose analyses exclude those with dementia. Cautions against a “hypercognitive culture” punctuate every chapter. Post believes, as do most family members who care for a loved one, that conflating moral status with mental powers is a dangerous practice and one that could become pervasive in our culture. Pushing this notion, Post argues that opening the door to assisted suicide would undermine the momentum for providing more humane care. Many will not follow him this far, but this book should advance the debate in a long-neglected area of policy.

There is much work left to be done. At many junctures and in many ways, the book indicts the system of care for those with dementia. No one who deals with the system of long-term care would disagree about its inadequacy. But while Post persuasively points to holes in the fabric, he does not give us a needle and thread to stitch together the patchwork of services. We can all agree that services should be better and more plentiful, but who should pay for them, and what demands will they make on public resources? Most of those whom Post criticizes are attempting to define the limits of social obligations. Criticizing those limits is fair game. But Post can fully persuade us only if he invents some other brake on entitlements. This will require refining further the goals of care of the demented and a moral framework that allocates individual, family, and social responsibilities. This is a logical topic for the next book on the ethics of care of the demented. Post provides a base from which to start.

Robert Mullan Cook-Deegan, M.D.
University of Texas, Dallas, Richardson, TX 75083-0688