Books Reviewed
The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying.
Stephen G. Post.
2nd edition. Baltimore, Md.: The Johns Hopkins University Press, 2000. 192 pp. $18.95 (Softcover).

Alzheimer's Early Stages: First Steps in Caring and Treatment.
Daniel Kuhn.
Hunter House, 1999. 284 pp. $14.95 (Softcover).

We can only assume that Alzheimer's Disease (AD) has been with humanity throughout history—from the Africans of 100,000 years ago, to the cave painters of southern France, to the Incas and the ancient Greeks. We know, for example, of several prominent ancient Athenians who lived well into their 90s. And literature from those cultures suggests some significant percentage of dementia amongst those who were very elderly. What has changed so dramatically is how many of us are elderly. Moreover the experience of AD has just as surely changed; not so much in its biology, but in its meaning, both social and individual.

AD is, of course, by and large a disease of the aged. Though extremely rare among fifty-year-olds, the incidence of AD increases inexorably for each decade we age past fifty. In the ancient world, average life expectancy might have been around twenty. Infant mortality, poor nutrition, infectious diseases, war, and trauma all took their toll; the percentage of those who reached old age was quite small. Thus, while AD occurred, it was fairly insignificant—at least in epidemiological terms.

This picture changed very gradually. Even in developed nations, at the beginning of the twentieth century average life expectancy was somewhere in the forties. Through improved nutrition, improved public health measures, and to some extent through medicine's confrontation with infectious diseases, average life expectancy nearly doubled in the developed world. We now have, both as a percentage of the population and in terms of absolute numbers, more elderly living with us than ever before. This is especially true of the very old: the eighty-five and older population. Having greatly reduced the deaths attributable to infectious diseases, poor nutrition, poor sanitation, and trauma, we have seen a vast increase in deaths attributable to heart disease, cancer, and, yes, AD. And while we have made substantial progress in curing or managing cancer and heart disease, substantive progress toward medically treating AD has been elusive, even if, as some argue, it is tantalizingly close. Finally, pressure is mounting to understand and deal with AD because the aging, demographically huge Baby Boomer cohort is now confronting the care of parents with AD and brooding over their own fate.

These four books each represent different facets of current discussions concerning AD, but not one of them is truly a medical text. Rather than focus upon plaques and tangles, brain biology, or cholinesterase, each of these books struggles to find the person in AD.

The Moral Challenge of Alzheimer Disease, by Stephen Post, is a straightforward work in ethics. Post's central thesis is that much of traditional moral philosophy has emphasized rationality as the preeminent criterion of personhood and, accordingly, the criterion for membership in the community of moral agents. Post points out that the very term "person" derives from the Latin word for "mask," the role that characters represented in a drama. The person is the face, at least in a performative sense. Viewed in this way, even as AD robs the individual of rationality, she still retains her face, her persona. Though cognition is impaired, social awareness can linger, emotion can remain even longer, and a sense of touch can persist until the very end. Thus, the AD patient is still with us. From this point, Post develops the implications of an ethics of AD care: What does it mean for family caregivers? For society's obligations? In terms of life-extending/death-delaying medical technology? Post's efforts here are very rewarding for the reader. Several of these chapters are both powerful and poignant. And for those readers who may have already read the 1995 first edition, this second edition has much new material that is woven in through a careful reworking of several of the key chapters. In some instances the arguments seem fuller and more mature.

While I highly recommend this book, it still could have been closer to the ground. Post's notion of how the AD patient experiences the world is somewhat underdeveloped. And I am nagged by the notion that experience may vary greatly not only from individual to individual, but that race, gender, economic status, and ethnic heritage may all have large influences on what we experience. But such questions remain on the periphery of Post's work. Finally, Post seems to overlook prevailing social attitudes, the deeply ingrained prejudices against aging, frailty, and dementia that will weigh heavily against where he would like to lead us.

Rethinking Alzheimer's Care by Sam Fazio, Dorothy Seman, and Jane Stansell is a much more radical text, and it seeks to do two quite different, if related, things at once. Its explicitly practical goal is to change how we practice AD care, both in terms of how we define goals and in the measures we take to achieve those goals. The book's second ambition is to change, quite dramatically, how we understand AD itself.

Fazio, Seman, and Stansell work to undermine, to get away from the medicalized model of AD. The individual is to be faced as a person, not as a victim of the medical diagnosis of AD. They write: "Family matters become medical matters when someone is diagnosed with a disease. Common characteristics not viewed as problems for individuals who are not diagnosed or labeled with a disease suddenly become behaviors or symptoms that need to be controlled or cured." Instead of labeling deficits with a diagnosis, Fazio, Seman, and Stansell urge readers to find ways to attend to, appreciate, and support the capacities that remain.

There are a multitude of constructive, practical suggestions throughout this book, suggestions that could easily improve the quality of care that AD individuals receive, both from family and from professional caregivers. But I still harbor concerns over the possible harms that a true normalizing of AD might cause. Such a move is a two-edged sword. For many families, indeed, for many AD individuals, the medical diagnosis can serve as a relief. It can make it easier for us to continue to love and care for the person by allowing us to discount the antagonizing behavior as caused by the disease, not chosen by the person. Yet do we "see" the AD individual best by not medicalizing or by medicalizing the condition? If a project to normalize AD were to prove successful, what would happen to society's willingness to pay for AD care or to fund medical research into treatments? However one answers these difficult questions, Fazio, Seman, and Stansell still have a great deal to offer.

Speaking Our Minds is not a polemic, at least not like The Moral Challenge of Alzheimer Disease or Rethinking Alzheimer's Care. A common critique of work in ethics and aging, ethics and disability, ethics and race, or ethics and poverty is that the voices of those at the heart of the debates—the old, the disabled, those of color, those of poverty—are largely absent from the discussion. Along those lines, how can one purport to do ethics and Alzheimer's without hearing from some of those at the center, individuals with AD? By giving voice to those with AD this volume hopes to connect, to enlighten, even to reassure those who have AD, those who care for AD individuals, and those who formulate policies and social structures for people with AD.

As engaging as this volume is, I came away with less than I had hoped for. The many transcribed conversations were, if anything, too coherent. Perhaps Lisa Snyder selected only those in early dementia. Or perhaps she engaged in a good deal of silent editing—she does acknowledge some editing of the transcripts. Whichever was her strategy, I saw very little of what looks like conversation with advancing dementia, which is where I am most puzzled. When the conversation is fragmented and filled with seeming non sequiturs, how are we to interpret what is said? What is the moderately advanced AD person thinking? It is relatively easy to understand the expressed frustrations, the fears, and, let us not overlook or forget, the joys of the individual in early AD. But as the gaps grow larger, the threads more tenuous, the shadows darker, and the lights brighter in spots, can we, who do not now have AD, see into that world of experience? Can we understand and commune with those afflicted by AD?

Also lacking in Snyder's volume is a richer sense of social context. What is the AD experience of those in poverty? Does race make a difference? While I wish I had a good idea, I fear that I do not know the answers. And what role does gender play? We know that the vast majority of caregivers are women. We also know that particularly in the institutional setting AD patients are disproportionately women. How does this affect the experience of AD? How does it affect our social attitidues?

Finally we have Daniel Kuhn's Alzheimer's Early Stages. This is an exceedingly informative and helpful volume that should find a broad audience. It is a good source for our current understanding of AD, in terms of our medical knowledge and in terms of existing pharmaceuticals and medical research. Although Kuhn expresses some optimism about AD treatments over the horizon, he is justifiably short on enthusiasm in terms of where we are now. But the real strength of the book is on its exploration of, and advice for, caregiving in the early stages. This is particularly valuable since most work on caregiving has been directed toward the kinds of issues and the kinds of caregivers that arise when AD has progressed fairly far, especially relating to the institutionalized setting. But, as Kuhn quite correctly chides us, a great deal of AD caregiving happens in the home, is delivered by family members, and can go on for several years before the AD individual is finally institutionalized, if ever. Without much help from professional caregivers, and little if any support from society, these family members carry an enormous burden over a long time, even if that burden is lovingly accepted. Kuhn's aim is to reach out to these people, to offer insight and practical suggestions for providing AD care at home in ways that are better for everyone. I was particularly pleased to see that Kuhn devotes one part of the book to ideas, concerns, and strategies for preserving the well-being of the caregiver at home. All too often, by focusing upon the needs and welfare of the individual with AD, we overlook, impoverish, and overwork the unsupported caregiver at home; and I see little kindness, charity, or justice in that approach.

I should confess that I have given copies of this book to families I know who care for an AD individual. And, though neither of them is AD at present, I have given a copy to my own parents who are in their 70s and who, for reasons of family history, have some apprehension of the future. In all these cases, I have received very positive feedback concerning Kuhn's book.

As I grow older I know that I will face certain risks, and I know, at least in an abstract sense, that I will one day die. Heart disease and cancer are both good candidates, and infectious disease remains a real possibility. But AD also looms over the horizon. And of them all, I believe I fear AD in ways that I do not fear the others. Perhaps this is prejudice on my part—after all, I am a philosopher by inclination and by training, someone presumably devoted to a life of reason. Can I learn to live a life where such reason is largely absent? Can I find meaning elsewhere?

Each of these books offers some contribution in that direction, though I do think some are more successful than others. And yet, as I do not believe there is likely to be any such thing as the last word in this matter, we can all continue to yearn for more scholarship and reflection in this area. AD will be with us for at least some time to come, and as a member of the community, as a scholar, as a potential caregiver, and a potential victim, I should like to see the faces of AD, not just the pictures of plaques and tangles, but the faces. For the faces can help me know what I do not know, what I should do, and who I should be.