Ethics and Dementia by fjzhxb

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									Ethics and Dementia
This list is a reviewed collection of items prepared by the Alzheimer's Association Green-Field Library staff. Contact your local chapter or local library for availability of the items. On this resource list: Alzheimer’s Association Publications · Brochure General · Articles, Journal · Books · Journal Issues · Videos Diagnosis, Treatment, and Care · Articles, Journal · Books · Videos Decision Making · Articles, Journal · Books End-of-Life · Articles, Journal · Books · Video Legal Aspects · Articles, Journal · Video Research · Articles, Journal · Book

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Alzheimer’s Association Publications Brochure End-of-life decisions: honoring the wishes of the person with Alzheimer's disease Chicago, IL: Alzheimer's Association National Office, 2006. Available online. http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf Single copy free. (800) 272-3900

General Articles, Journal Baldwin, C.; Hughes, J.; Hope, T.; et al. Ethics and dementia: mapping the literature by bibliometric analysis. International Journal of Geriatric Psychiatry. January 2003; vol. 18(1), pp. 41-54. Green-Field Library owns. Bennett, D.A. Alzheimer disease: ethics. JAMA (The Journal of the American Medical Association). July 18, 2001; vol. 286(3), pp. 353. Green-Field Library owns. Ferenz, L.D. "The aesthetics of dementia care": some final thoughts from Tom Kitwood. The Journal of Clinical Ethics. Spring 2000; vol. 11(1), pp. 69-72. Green-Field Library owns. Holstein, M.B. Ethics and Alzheimer's disease: widening the lens. Journal of Clinical Ethics. Spring 1998; vol. 9(1), pp. 13-22. Green-Field Library owns. Hughes, J.C. Views of the person with dementia. Journal of Medical Ethics. April 2001; vol. 27(2), pp. 86-91. Green-Field Library does not own. Hughes, J.C.; Hope, T.; Savulescu, J. Carers, ethics and dementia: a survey and review of the literature. International Journal of Geriatric Psychiatry. January 2002; vol. 17(1), pp. 35-40. Green-Field Library owns.

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Jennings, B. Life greater then the sum of its sensations: ethics, dementia, and the quality of life. Journal of Mental Health and Aging. Spring 1999; vol. 5(1), pp. 95-106. Green-Field Library does not own. Moody, H.R. Cost of autonomy, the price of paternalism. Journal of Gerontological Social Work. 1998; vol. 29(2-3), pp. 111-127. Green-Field Library owns. Nelson, J.L. Reasons and feelings, duty and dementia. Journal of Clinical Ethics. Spring 1998; vol. 9(1), pp. 58-65. Green-Field Library owns. Noyes, L.E.; Silva, M.C. Ethics of locked special care units for persons with Alzheimer's disease. American Journal of Alzheimer's Care and Related Disorders and Research. July-August 1993; vol. 8(4), pp. 12-15. Green-Field Library owns. Post, S.G. Key issues in the ethics of dementia care. Neurologic Clinics. November 2000; vol. 18(4), pp. 1011-1021. Green-Field Library Call No.: WM220 D3765 2000 Powers, B.A. Ethnographic analysis of everyday ethics in the care of nursing home residents with dementia: A taxonomy. Nursing Research. November-December 2001; vol. 50(6), pp. 332-339. Green-Field Library does not own. Service, K.P. Considerations in care for individuals with intellectual disability with advanced dementia. Journal of Gerontological Social Work. 2002; vol. 38(1/2), pp. 213-224. Green-Field Library owns. Books Kitwood, T. Dementia reconsidered: the person comes first. Philadelphia, PA: Open University Press, 1997. ISBN: 0335198554. Green-Field Library Call No. WM 220 K62 1997 Post, S.G. The moral challenge of Alzheimer disease ethical issues from diagnosis to dying. Baltimore, MD.: Johns Hopkins University Press, 2000. ISBN: 0801864097 Green-Field Library Call No.: WM 220 P87 2000

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Sabat, S.R. The experience of Alzheimer’s disease: life through a tangled veil. Malden, MA: Blackwell Publishers, 2001. ISBN: 0631216650. Green-Field Library Call No.: WM 220 S113 2001 Journal Issues Bowlby Sifton, C., ed. Alzheimer Care Quarterly: Ethics. Summer 2002; vol. 3(7), pp. 194-269. A journal issue covering such topics as ethics and genetic risk, end-stage nutrition, terminal care, Down syndrome, spirituality, and sexual abuse. Green-Field Library owns. Spurgion, E.D.; Sabatino, C.P.; Coleman, N.M; et al. Georgia Law Review. Joint Conference on Legal/Ethical Issues in the Progression of Dementia. Winter 2001; vol. 35(2), pp. 391-449. Green-Field Library does not own. Journal of Clinical Ethics: Ethics and Alzheimer’s Disease. Spring 1998; vol. 9(1), pp. 3 -91. A journal issue devoted to the ethics of personhood in Alzheimer’s disease. Green-Field Library does not own. Videos Curing the incurable. Princeton, NJ: Films for the Humanities, 2000. 1 videocassette (50 min.) Degenerative diseases like Alzheimer’s, Parkinson’s, stroke, and MS are discussed in this video, which focuses on the ethics of using genetically engineered cancer cells and stem cells to repair brain damage. Irving Weissman explores the social and economic impacts of this type of therapy. Green-Field Library does not own. Ethical issues. Carrolton, TX: PRIMEDIA Workplace, 1999. 1 videocassette (40 min.) Ethicist Stephen Post explores the patient’s right to know the diagnosis, genetic testing, misuse of restraints, new drugs, reality orientation, autonomy, and dignity. Special attention is paid to ethics and Alzheimer’s disease. Green-Field Library Call No.: WM 220 VC no. 841 1999

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Diagnosis, Treatment, and Care Articles, Journal Barber, C.E.; Lyness, K.P. Ethical issues in family care of older persons with dementia: implications for family therapists. Home Health Care Services Quarterly. 2001; vol. 20(3), pp. 1-26. Green-Field Library does not own. Bianchetti, A.; Trabucchi, M. Ethical problems in the use of antidementia drugs. Journal of the American Geriatrics Society. July 1999; vol. 47(7), pp. 913. Green-Field Library owns. Brauner, D.J.; Muir, J.C.; Sachs, G.A. Treating nondementia illnesses in patients with dementia. JAMA (The Journal of the American Medical Association). June 28, 2000; vol. 283(24), pp. 3230-3235. Green-Field Library owns. Daly, B.J. Special challenges of withholding artificial nutrition and hydration. Journal of Gerontological Nursing. September 2000; vol. 26(9), pp. 25-31. Green-Field Library owns. Gillick, M.R. Artificial nutrition and hydration in the patient with advanced dementia: is withholding treatment compatible with traditional Judaism? Journal of Medical Ethics. 2001; vol. 27(1), pp. 12-15. Green-Field Library does not own. Haddad, A. Ethics in action. An 85-year-old man with mild dementia often threatens the safety of other patients when he gets out of bed. RN. May 1999; vol. 62(5), pp. 27-30. Green-Field Library does not own. Hughes, J.C. Ethics and the anti-dementia drugs. International Journal of Geriatric Psychiatry. June 2000; vol. 15(6), pp. 538-543. Green-Field Library owns. Hughes, J.C.; Louw, S.J. Electronic tagging of people with dementia who wander. BMJ (British Medical Journal; Clinical Research Ed). October 19, 2002; vol. 325(7369), pp. 847-848. Green-Field Library does not own. Kier, F.J.; Molinari, V. "Do-it-yourself" dementia testing: issues regarding an Alzheimer's home screening test. The Gerontologist. June 2003; vol. 43(3), pp. 295-301. Green-Field Library owns.

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McNamara, E.P.; Kennedy, N.P. Tube feeding patients with advanced dementia: an ethical dilemma. The Proceedings of the Nutrition Society. May 2001; vol. 60(2), pp. 179-185. Green-Field Library does not own. Miller, L.L.; Nelson, L.L.; Mezey, M. Comfort and pain relief in dementia: awakening a new beneficence. Journal of Gerontological Nursing. September 2000; vol. 26(9), pp. 32-40. Green-Field Library owns. Mion, L.C.; O'Connell, A. Parenteral hydration and nutrition in the geriatric patient: clinical and ethical issues. Journal of Infusion Nursing. May-June 2003; vol. 26(3), pp. 144-152. Green-Field Library does not own. Newton, M.J. Precedent autonomy: life-sustaining intervention and the demented patient. Cambridge Quarterly of Healthcare Ethics. Spring 1999; vol. 8(2), pp. 189-199. Green-Field Library does not own. Paulson, H.L. Diagnostic testing in neurogenetics: principles, limitations, and ethical considerations. Neurologic Clinics. August 2002; vol. 20(3), pp. 627-643. Green-Field Library does not own. Post, S.G. Tube feeding and advanced progressive dementia. The Hastings Center Report. January-February 2001; vol. 31(1), pp. 36-42. Green-Field Library does not own. Post, S.G; Whitehouse, P.J; Binstock, R.H.; et al. The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective. JAMA (Journal of the American Medical Association). March 1997; vol. 277(10), pp. 832-836. Green-Field Library owns. Rogers, P.D.; Bocchino, N.L. Restraint-free care: is it possible? The American Journal of Nursing. October 1999; vol. 99(10), pp. 26-33. Green-Field Library does not own. Skelly, R.H. Are we using percutaneous endoscopic gastrostomy appropriately in the elderly? Current Opinion in Clinical Nutrition and Metabolic Care. January 2002; vol. 5(1), pp. 35-42. Green-Field Library does not own.

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Udell, J.L. Tube feeding in patients with advanced dementia. JAMA (The Journal of the American Medical Association). March 22-29, 2000; vol. 283(12), pp. 1563-1564. Green-Field Library owns. Watson, R. Eating difficulty in older people with dementia. Nursing Older People. May 2002; vol. 14(3), pp. 21-25. Green-Field Library does not own. Whitehouse, P.; Frisoni, G.B.; Post, S. Breaking the diagnosis of dementia. Lancet Neurology. February 2004; vol. 3(2), pp. 124-128. Green-Field Library does not own. Wilmot, S.; Legg, L.; Barratt, J. Ethical issues in the feeding of patients suffering from dementia: a focus group study of hospital staff responses to conflicting principles. Nursing Ethics. November 2002; vol. 9(6), pp. 599611. Green-Field Library does not own. Young, J.; Fawcett, T. Artificial nutrition in older people with dementia: moral and ethical dilemmas. Nursing Older People. July-August 2002; vol. 14(5), pp. 19-21. Green-Field Library does not own. Books Powers, B.A. Nursing home ethics: everyday issues affecting residents with dementia. New York, NY: Springer Publishing, 2003. ISBN: 0826119646. Green-Field Library Call No.: WM 220 P888 2003 Qilizbash, N., ed. Evidence-based dementia practice. Malden, MA: Blackwell Science, 2002. ISBN: 0632052961. Green-Field Library Call No: WM 220 E93 2002 Taking care: ethical caregiving in our aging society. Washington, DC: President’s Council on Bioethics, 2005. Available online: http://www.bioethics.gov Green-Field Library Call No.: WB 60 T136 2005

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Video Living with Alzheimer’s disease: The family caregiver’s guide: ethical issues. Baltimore, MD: Video Press, 1998. 1 videocassette (20 min.) Peter Rabins addresses ethical topics on assessment, independent living, the driving dilemma, disclosing the truth, advanced directives, medical decision-making, feeding tubes, and antibiotics. Green-Field Library Call No.: WM 220 VC no.542-6 1998 Decision Making Articles, Journal Bamford, C.; Lamont, S.; Eccles, M.; et al. Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry. February 2004; vol. 19(2), pp. 151-169. Green-Field Library owns. Berger, J.T.; Rosner, F. Ethical challenges posed by dementia and driving. The Journal of Clinical Ethics. Winter 2000; vol. 11(4), pp. 304-308. Green-Field Library owns. Burgener, S.C. Care decisions in irreversible dementia: who speaks for the patient? Journal of Gerontological Nursing. August 1999; vol. 25(8), pp. 5355. Green-Field Library owns. Downs, M.G. How to tell? Disclosing a diagnosis of dementia. Generations. Fall 1999; vol. 23(3), pp. 30-34. Green-Field Library owns. Earnst, K.S.; Marson, D.C.; Harrell, L.E. Cognitive models of physicians' legal standard and personal judgments of competency in patients with Alzheimer's disease. Journal of the American Geriatrics Society. August 2000; vol. 48(8), pp. 919-927. Green-Field Library owns. Fahy, M.; Wald, C.; Walker, Z.; et al. Secrets and lies: the dilemma of disclosing the diagnosis to an adult with dementia. Age and Ageing. July 2003; vol. 32(4), pp. 439-441. Green-Field Library does not own.

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Frankel, S. The dementia dilemma. Perspectives in Biology and Medicine. Winter 1999; vol. 42(2), pp. 174-178. Green-Field Library does not own. Gallagher, P.; Clark, K. The ethics of surgery in the elderly demented patient with bowel obstruction. Journal of Medical Ethics. April 2002; vol. 28(2), pp. 105-108. Green-Field Library does not own. Healy, T.C. Community-dwelling cognitively impaired frail elders: an analysis of social workers' decisions concerning support for autonomy. Social Work in Health Care. 1999; vol. 30(2), pp. 27-47. Green-Field Library does not own. Hoefler, J.M. Making decisions about tube feeding for severely demented patients at the end of life: clinical, legal, and ethical considerations. Death Studies. April-May 2000; vol. 24(3), pp. 233-254. Green-Field Library does not own. Husband, H.J. Diagnostic disclosure in dementia: an opportunity for intervention? International Journal of Geriatric Psychiatry. June 2000; vol. 15(6), pp. 544-547. Green-Field Library owns. Jones, J.W.; McCullough, L.B.; Richman, B.W. Advanced age, dementia, and an abdominal aneurysm: intervene? Journal of Vascular Surgery. May 2003; vol. 37(5), pp. 1132-1133. Green Field Library does not own. Kapp, M.B. Should home screening tests for Alzheimer's disease be regulated? The Gerontologist. June 2003; vol. 43(3), pp. 292-294. Green-Field Library owns. Karlawish, J.H.; Clark, C.M. Addressing the challenges of transforming laboratory advances into Alzheimer's disease treatments. Neurobiology of Aging. November-December 2002; vol. 23(6), pp. 1043-1049. Green-Field Library owns. Karlawish, J.H.; Quill T.; Meier, D.E. Consensus-based approach to providing palliative care to patients who lack decision-making capacity. Annals of Internal Medicine. May 18, 1999; vol. 130(10), pp. 835-840. Green Field Library does not own.

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Karlawish, J.T.; Casarett, D.J.; James, B.D. Alzheimer's disease patients' and caregivers' capacity, competency, and reasons to enroll in an earlyphase Alzheimer's disease clinical trial. Journal of the American Geriatrics Society. December 2002; vol. 50(12), pp. 2019-2024. Green-Field Library owns. Kim, S.Y.; Karlawish, J.H. Ethics and politics of research involving subjects with impaired decision-making abilities. Neurology. December 23, 2003; vol. 61(12), pp. 1645-1646. Green-Field Library owns. Marzanski, M. On telling the truth to patients with dementia. The Western Journal of Medicine. November 2000; vol. 173(5), pp. 318-323. Green Field Library does not own. Marzanski, M. Would you like to know what is wrong with you? On telling the truth to patients with dementia. Journal of Medical Ethics. April 2000; vol. 26(2), pp. 108-113. Green Field Library does not own. McConnell, L.M.; Koenig, B.A.; Greely, H.T.; et al. Genetic testing and Alzheimer disease: recommendations of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing. 1999; vol. 3(1), pp. 3-12. Green Field Library does not own. Nicholls, J.; Clayton, H. Should nurses give medication without the patient's consent? Nursing Times. October 11-17, 2001; vol. 97(41), pp. 17. Green Field Library does not own. Pellegrino, E.D. Decisions to withdraw life-sustaining treatment: a moral algorithm. JAMA (The Journal of the American Medical Association). February 23, 2000; vol. 283(8), pp. 1065-1067. Green-Field Library owns. Pinner, G.; Bouman, W.P. To tell or not to tell: on disclosing the diagnosis of dementia. International Psychogeriatrics. June 2002; vol. 14(2), pp. 127137. Green-Field Library owns. Post, S.G. Physician-assisted suicide in Alzheimer's disease. Journal of the American Geriatrics Society. May 1997; vol. 45(5), pp. 647-651. Green-Field Library owns. Pucci, E.; Belardinelli, N.; Borsetti, G.; et al. Relatives' attitudes towards informing patients about the diagnosis of Alzheimer's disease. Journal of Medical Ethics. February 2003; vol. 29(1), pp. 51-54. Green-Field Library does not own.

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Simon, J.R.; Dwyer, J.; Goldfrank, L.R. The difficult patient. [emergency physicians face ethical dilemmas ranging from issues of autonomy, as in the case of a person with dementia, to questions of appropriate use of resources.]. Emergency Medicine Clinics of North America. May 1999; vol. 17(2), pp. 353-370. Green Field Library does not own. Sugarman, J.; Cain, C.; Wallace, R.; et al. How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society. August 2001; vol. 49(8), pp. 1110-1119. Green-Field Library owns. Thomas, A.M.; Cohen, G.; Cook-Deegan, R.M.; et al. Alzheimer testing at silver years. Cambridge Quarterly of Healthcare Ethics. 1998; vol. 7, pp. 294-307. Green Field Library does not own. Treloar, A.; Beats, B.; Philpot, M. Pill in the sandwich: covert medication in food and drink. Journal of the Royal Society of Medicine. August 2000; vol. 93, pp. 408-411. Green Field Library does not own. Volicer, L. Is percutaneous endoscopic gastrostomy really better? Journal of the American Geriatrics Society. November 2002; vol. 50(11), pp. 1907. Green-Field Library owns. Volicer, L.; Ganzini, L. Health professionals' views on standards for decision-making capacity regarding refusal of medical treatment in mild Alzheimer's disease. Journal of the American Geriatrics Society. September 2003; vol. 51(9), pp. 1270-1274. Green-Field Library owns. Weiner, C.; Tabak, N.; Bergman, R. The use of physical restraints for patients suffering from dementia. Nursing Ethics. September 2003; vol. 10(5), pp. 512-525. Green Field Library does not own. Books Dunn, H. Hard choices for loving people: CPR, artificial feeding, comfort care, and the patient with a life-threatening illness. Herndon, VA: A & A Publishing, 2001. ISBN: 1928560032. Green-Field Library Call No.: W 50 D923 2001

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Should I enter a clinical trial? A patient reference guide for adults with a serious or life-threatening illness. Plymouth Meeting, PA.: Emergency Care Research Institute, 2002. http://www.ecri.org/Patient_Information/Patient_Reference_Guide/prg.pdf Green-Field Library Call No.: W 20.55 S559 2002 End-of-life Articles, Journal Berghmans, R.L.P. Ethics of end-of-life decisions in cases of dementia: views of the Royal Dutch Medical Association with some critical comments. Alzheimer Disease and Associated Disorders. 1999; vol. 13(2), pp. 91-95. Green-Field Library owns. Coetzee, R.H.; Leask, S.J.; Jones, R.G. Attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia. International Journal of Geriatric Psychiatry. February 2003; vol. 18(2), pp. 169-173. Green-Field Library owns. Jennings, B. Hospice and Alzheimer disease: a study in access and simple justice. The Hastings Center Report. March-April 2003; (Suppl.), pp. S24S26. Green Field Library does not own. Michel, J.P.; Pautex, S.; Zekry, D.; et al. End-of-life care of persons with dementia. Journals of Gerontology: Series A: Biological Sciences and Medical Sciences. October 2002; vol. 57A(10), pp. M640-M644. Green-Field Library owns. Scanlon, C. Ethical concerns in end-of-life care. The American Journal of Nursing. January 2003; vol. 103(1), pp. 48-55. Green Field Library does not own. Books Braun, K.; Pietsch, J.H.; Blanchette, P.L. Cultural issues in end-of-life decision making. Thousand Oaks, CA: Sage Publications, 2000. ISBN: 0761912169. Green-Field Library Call No.: W 85.5 C 968 2000

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Kapo, J.; Karlawish, J. Ethical challenges of end-of-life care for dementia patients. IN: Living with grief: Alzheimer’s disease. Washington, DC: Hospice Foundation of America, 2004. ISBN: 1893349055. Green-Field Library Call No.: BF 575 L785 2004 Purtilo, R.B.; Have, T. Ethical foundations of palliative care for Alzheimer disease. Baltimore: Johns Hopkins University Press, 2004. ISBN: 0801878705. Green Field Library Call No.: WM 220 P985 2004 Video Understanding life plans. Baltimore, MD: Video Press, 2001. 1 videocassette ( 20 min.) Feeding tubes, treatment reduction, and hospice care are among the difficult choices for families discussed in this video. Healthcare providers are often asked to provide support for these end-of-life decisions. Green-Field Library Call No.: WB 310 VC no.728 2001 Legal Aspects Articles, Journal Berghmans, R. Advance directives and dementia. Annals of the New York Academy of Sciences. September 2000; vol. 913, pp. 105-110. Green Field Library does not own. Cavalieri, T.A.; Latif, W.; Ciesielski, J. How physicians approach advance care planning in patients with mild to moderate Alzheimer's disease. The Journal of the American Osteopathic Association. October 2002; vol. 102(10), pp. 541-541. Green Field Library does not own. Cooper, J. The law and ethics of the use of experimental medication in patients incapable of expressing consent: between a rock and a hard place. Medicine and Law. 2000; vol. 19(2), pp. Green Field Library does not own. Fazel, S.; McMillan, J.; O'Donnell, I. Dementia in prison: ethical and legal implications. Journal of Medical Ethics. June 2002; vol. 28(3), pp. 156-159. Green Field Library does not own.

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Kane, M.N. Legal guardianship and other alternatives in the care of elders with Alzheimer's disease. American Journal of Alzheimer's Disease and Other Dementias. March-April 2001; vol. 16(2), pp. 89-96. Green-Field Library owns. Kapp, M.B. Legal interventions for persons with dementia in the USA: ethical, policy and practical aspects. Aging & Mental Health. November 2001; vol. 5(4), pp. 312-315. Green Field Library does not own. Kapp, M.B. Physician's legal duties regarding the use of genetic tests to predict and diagnose Alzheimer's disease. Journal of Legal Medicine. December 2000; vol. 21(4), pp. 445-475. Green Field Library does not own. Kuther, T.L. Competency to provide informed consent in older adulthood. Gerontology and Geriatrics Education. 1999; vol. 20(1), pp. 15-30. Green Field Library does not own. Lynn, J.; Teno, J.; Dresser, R.; et al. Dementia and advance-care planning: perspectives from three countries on ethics and epidemiology. Journal of Clinical Ethics. Winter 1999; vol. 10(4), pp. 271-285. Green-Field Library owns. Moody, J. Dementia and personhood: implications for advance directives. Nursing Older People. June 2003; vol. 15(4), pp. 18-21. Green Field Library does not own. Rempusheski, V.F.; Hurley, A.C. Advance directives and dementia. Journal of Gerontological Nursing. October 2000; vol. 26(10), pp. 27-34. Green-Field Library owns. Rich, B.A. Personhood, patienthood, and clinical practice: reassessing advance directives. Psychology, Public Policy, and Law. September 1998; vol. 4(3), pp. 610-628. Green Field Library does not own. Video Nursing assistant. Pewaukee, WI: Waukesha County Technical College, 2003. 3 videocassettes (90 min.) This video set is part of a training program of 80 videos and CD-ROMs covering a broad range of care topics for nursing assistants and home healthcare aides. This component concerns client rights, worker rights, and legal and ethical responsibilities. Green-Field Library does not own.

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Research Articles, Journal Antuono, P.; Beyer, J. The burden of dementia. A medical and research perspective. Theoretical Medicine and Bioethics. January 1999; vol. 20(1), pp. 3-13. Green Field Library does not own. Dresser, R. Advance directives in dementia research: promoting autonomy and protecting subjects. IRB; A Review of Human Subjects Research. January-February 2001; vol. 23(1), pp. 1-6. Green Field Library does not own. Fetal trials need public funds. Nature. August, 28 2003; vol. 424(6952), pp. 981. Green-Field Library does not own. Fisher, C.B. Respecting and protecting mentally impaired persons in medical research. Ethics Behavior. 2002; vol. 12(3), pp. 279-283. Green Field Library does not own. Fry, S.T. Ethical issues in Alzheimer disease research. Alzheimer Disease and Associated Disorders. April-June 1999; vol. 13(Suppl. 1), pp. S54-S58. Green-Field Library owns. Karlawish, J.H.; Casarett, D. Addressing the ethical challenges of clinical trials that involve patients with dementia. Journal of Geriatric Psychiatry and Neurology. Winter 2001; vol. 14(4), pp. 222-228. Green-Field Library owns. Karlawish, J.H.; Knopman, D.; Clark, C.M.; et al. Informed consent for Alzheimer's disease clinical trials: a survey of clinical investigators. IRB; A Review of Human Subjects Research. September-October 2002; vol. 24(5), pp. 1-5. Green Field Library does not own. Kawas, C.H.; Clark, C.M.; Farlow, M.R.; et al. Clinical trials in Alzheimer disease: debate on the use of placebo controls. Alzheimer Disease and Associated Disorders. July-September 1999; vol. 13(3), pp. 124-129. Green-Field Library owns. Post, S.G. Comments on research in the social sciences pertaining to Alzheimer's disease: a more humble approach. Aging and Mental Health. May 2001; vol. 5(Suppl. 1), pp. S17-S19. Green Field Library does not own.

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Post, S.G.; Beerman, B.; Brodaty, H. Ethical issues in dementia drug development. Position paper from the International Working Group on Harmonization of Dementia Drug Guidelines. Alzheimer Disease and Associated Disorders. 1997; vol. 11(Suppl. 3), pp. 26-28. Green-Field Library owns. Pucci, E.; Belardinelli, N.; Borsetti, G.; et al. Information and competency for consent to pharmacologic clinical trials in Alzheimer disease: an empirical analysis in patients and family caregivers. Alzheimer Disease and Associated Disorders. July-September 2001; vol. 15(3), pp. 146-154. Green-Field Library owns. Researchers race for Alzheimer's cure. Provider (Washington, DC). November 2002; vol. 28(11), pp. 26, 28, 31. Green-Field Library owns. Rosenfeld, B. Competence to consent to research: where psychology, ethics, and the law intersect. Ethics & Behavior. July 2002; vol. 12(3), pp. 284-287. Green Field Library does not own. Sevick, M.A.; McConnell, T.; Muender, M. Conducting research related to treatment of Alzheimer's disease. Journal of Gerontological Nursing. February 2003; vol. 29(2), pp. 6-12. Green-Field Library owns. Spriggs, M. Genetically selected baby free of inherited predisposition to early-onset Alzheimer's disease. Journal of Medical Ethics. October 2002; vol. 28(5), pp. 290. Green Field Library does not own. Stocking, C.B.; Hougham, G.W.; Baron, A.R.; et al. Are the rules for research with subjects with dementia changing?: views from the field. Neurology. Dec 23, 2003; vol. 61(12), pp. 1649-1651. Green-Field Library owns. Stocking, C.B.; Hougham, G.W.; Baron, A.R.; et al. Ethics reporting in publications about research with Alzheimer's disease patients. Journal of the American Geriatric Society. February 2004; vol. 52(2), pp. 305-310. Green-Field Library owns. Trent, B. Alzheimer's research: physicians begin to tread in an ethical minefield. CMAJ (Canadian Medical Association Journal). Mar 15, 1989; vol. 140(6), pp. 726-728, 730. Green Field Library does not own.

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Wendler, D.; Martinez, R.A.; Fairclough, D.; et al. Views of potential subjects toward proposed regulations for clinical research with adults unable to consent. American Journal of Psychiatry. April 2002; vol. 159(4), pp. 585-591. Green-Field Library owns. Wendler, D.; Prasad, K.; Wilfond, B. Does the current consent process minimize the risks of genetics research? American Journal of Medical Genetics. December 1, 2002; vol. 113(3), pp. 258-262. Green Field Library does not own. Book Guiloff, R.J. Clinical trials in neurology. New York, NY: Springer Publishing, 2001. ISBN: 1852332395. Green Field Library does not o A selected list of references compiled by Mary Ann Urbashich, M.L.S. Alzheimer’s Association Green-Field Library and Resource Center Alzheimer’s Association National Office Chicago, IL 60601 Reviewed by Stephen G. Post, Ph.D. Department of Bioethics Case Western Reserve University Cleveland, OH 44106

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Ethics and Dementia
A selected list of references compiled by Mary Ann Urbashich, M.L.S. Alzheimer’s Association Green-Field Library and Resource Center Alzheimer’s Association National Office Chicago, IL 60601 Reviewed by Stephen G. Post, Ph.D. Department of Bioethics Case Western Reserve University Cleveland, OH 44106 Updated June 2004

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