Dementia and Aging: Ethics, Values, and Policy Choices
Robert H. Binstock, PhD; Stephen G. Post, PhD; and Peter J. Whitehouse, MD, PhD, Editors
Johns Hopkins University Press, Baltimore
1992, 184 pp., $50 (hardback), $18.95 (paperback)
In his foreword, Robert N. Butler, MD, writes, "The words in the title Dementia and Aging: Ethics, Values, and Policy Choices are in the right order: discussion of aging and dementia creates the need to consider ethics, values, and the ultimate choices of action, since policy choices will have to be made, like it or not." The current discussions of national healthcare reform make this a particularly timely book for those who struggle either to form choices or to deal with the choices made.
Professionals from various disciplines contributed to the book's three sections: an exploration of the medical knowledge and care-giving implications of dementia, the ethical and value choices that confront families and professionals, and the macropolicy decisions that will shape the future of dementia care.
The greatest value in this book lies not in the answers it provides but rather in the questions it poses. The medical discussion may be too clinically detailed for some readers, but the descriptions of care-giving dilemmas are very real to those involved in dementia care. What does the patient really experience? How do we interpret previously executed advance directives in light of that experience? What of the person who has no advance directives? What is the meaning of the principle of autonomy? How do we properly weigh the burden-benefit question in dealing with those in the various stages of dementia?
We may not agree with the viewpoints of each of the contributors, but each raises nuances of the debate that challenge us to examine our beliefs and our actions and stimulate discussions among family and professional care givers, ethics committees, policymakers, and others.
In the book's third section, the authors discuss the public policy implications of dementia care. One contributor suggests, "In the last decade Alzheimer's disease has moved, in the phrase of sociologist C. Wright Mills, from a private sorrow to being understood as a public problem." The sheer number of persons affected and the changing range of services they and their support systems need as the disease progresses have moved dementia care to the public arena. Political realities exist: Research directions will be chosen, and scarce resources will be allocated by design or default among the sometimes conflicting demands for home-based, community-based, and institutional care.
As policy decisions are made, whether institution specific or national in scope, the questions the authors raise should be explored. The content and style of this collection encourage us to do so.
Barbara J. Steinhaus
President/Chief Executive Officer
Marian Catholic Home
Milwaukee