The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying

Acknowledgments

I Acknowledgments I thank the Cleveland Chapter of the Alzheimer’s Association for facilitating an estimated forty focus-group sessions on ethical issues with family caregivers and persons with mild dementia. I am grateful to Stephen McConnell, Ph.D., senior vice president for public policy of the association, as well as his colleague in charge of chapter advocacy, Michael Splaine, for facilitating my educational efforts with chapters across the United States. Edward F. Truschke, president of the association , has been a source of constant support. My fellow members of the association’s National Ethics Advisory Panel have all been helpful conversation partners. And I thank the National Board of the association, which in May 1998 awarded me a special recognition “for professional outreach to the Alzheimer’s Association Chapters on ethics issues important to people with Alzheimer’s and their families.” I am much indebted to Joseph M. Foley, M.D., elder statesperson of neurology, who, when I first arrived at Case Western Reserve University in 1988, guided me toward the needs of the most deeply forgetful , persons to whom he is devoted. Sharen K. Eckert, Executive Director of the Cleveland Chapter, and Peter J. Whitehouse, M.D., Ph.D., are also high on the list of helpful colleagues. And thanks to Wendy Harris, medical editor of The Johns Hopkins University Press, for urging me to complete this full revision, replete with various new chapters. Finally, I thank the Cleveland Foundation, the Sihler Mental Health Fund, the Alzheimer’s Association, and the National Institutes of Health Human Genome Research Institute (RO1 HG01092–02SI) for support along the way. I also want to express my profound appreciation to the John Templeton Foundation and to the Becket Institute, located at St. Hugh’s College, Oxford, where I served for two summers as a senior research fellow with Templeton Foundation support. I owe a great deal to Kevin J. Hasson, president of the institute, and to Jonathan Rowland, its director. Ultimately, this book is about liberty in the context of profound altruism and about the freedom to live and die as well as one can under the circumstances of dementia. ix This page intentionally left blank The Moral Challenge of Alzheimer Disease This page intentionally left blank ...