Ethical Foundations of Palliative Care for Alzheimer Disease

Foreword, by Christine K. Cassel ix Preface xiii Acknowledgments xvii List of Contributors xix Introduction: Historical Overview of a Current Global Challenge 1(4) Henk A.M.J. ten Have and Ruth B. Purtilo Part I The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical Issues 5(54) ONE Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease 7(17) Richard L. O'Brien TWO Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competence 24(23) Roger A. Brumback THREE The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementia 47(12) David A. Bennahum Part II European Voices on U.S. and European Models of Palliative Care 59(54) FOUR Expanding the Scope of Palliative Care 61(19) Henk A.M.J. ten Have FIVE Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It? 80(17) Marcel G.M. Olde Rikkert and Anne-Sophie Rigaud SIX Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine 97(16) Pierre Boitte Part III Philosophical and Theological Explorations 113(48) SEVEN Autonomy and the Lived Body in Cases of Severe Dementia 115(16) Wim J.M. Dekkers EIGHT The Moral Self as Patient 131(15) Judith Lee Kissell NINE The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example 146(15) Rien Janssens Part IV Clinical Ethics Issues: Focus on Patients and Caregivers 161(80) TEN The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease 163(18) Jos V.M. Wehie ELEVEN Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges 181(19) Winifred J. Ellenchild Pinch TWELVE Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World 200(18) Franz J. Illhardt THIRTEEN The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case 218(8) Gunilla Nordenram FOURTEEN Alzheimer Disease and Euthanasia 226(15) Bert Gordijn Part V Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisions 241(68) FIFTEEN The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Families 243(18) Elizabeth Furlong SIXTEEN Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education 261(17) Linda S. Scheirton SEVENTEEN Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition 278(12) Eugenijus Gefenas EIGHTEEN Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease 290(15) Ruth B. Purtilo Commentary on Part V: A Clinician's Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Disease 305(4) Givi Javashvili Part VII Research Underpinnings for an Ethical Model of Palliative Care 309(34) NINETEEN Biomedical Research in Alzheimer Disease 311(9) Patricio F. Reyes TWENTY Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interests 320(10) Soren Holm TWENTY-ONE Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers 330(18) Amy M. Haddad Appendix A. The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer's Disease 343(5) Commentary by Jos V.M. Welie and Bert Gordijn Appendix B. Framework for an Educational Module for Health Professionals 348(7) Richard L. O'Brien and Wzm J.M. Dekkers Index 355