Ethical issues in family care of older persons with dementia: Implications for family therapists

Home Health Care Services Quarterly

Volumn 20, Issue 3, 2001, Pages 1-26

  Barber, Clifton E ^a   Lyness, Kevin P ^a  

^a Department of Environmental and Radiological Health Sciences   (United States)

Author keywords

Alzheimer s disease; Dementia; Ethical issues; Ethical principles; Family caregiving; Family therapists; Filial obligation

Indexed keywords

AGED; ALZHEIMER DISEASE; ARTICLE; BENEFICENCE; CAREGIVER; DECISION MAKING; DEMENTIA; ETHICS; FAMILY THERAPY; HOME CARE; HUMAN; HUMAN RELATION; MORALITY; NURSING; PERSONAL AUTONOMY; PSYCHOLOGICAL ASPECT; STANDARD;

AGED; ALZHEIMER DISEASE; BENEFICENCE; CAREGIVERS; DECISION MAKING; DEMENTIA; ETHICS; FAMILY THERAPY; HOME NURSING; HUMANS; INTERGENERATIONAL RELATIONS; MORAL OBLIGATIONS; PERSONAL AUTONOMY;

EID: 0035753453     PISSN: 01621424     EISSN: 15450856     Source Type: Journal    
DOI: 10.1300/J027v20n03_01     Document Type: Article

References (64)

1. American Association for Marriage and Family Therapy. (1998). Code of ethics. Washington, DC: AAMFT.
2. Ballard, E. (1989). Support systems: Meeting the needs of patients and family caregivers coping with Alzheimer’s disease. Physical Therapy in Health Care, 2,41-52.
3. Barber, C. E. (1989). Burden and family care of the elderly. In S. J. Bahr and E. T. Peterson (Eds.), Aging and the Family. Lexington, MA: Lexington Books, pp. 243-260.
4. Blau, Z. S. (1973). Old age in a changing society. New York: New Viewpoints.
5. Bonjean, M. J. (1997). Solution-focused brief therapy with aging families. In T. D. Hargrave S. M. Hanna (Eds.), The aging family: New visions in theory, practice, and reality (pp. 81-100). New York: Brunner/Mazel.
6. Brody, E. M. (1985). Parent care as a normative family stress. The Gerontologist, 25, 19-29.
7. Brody, E. M. (1978). The aging of the family. The Annals of the American Academy of Political and Social Science, 438, 13-27.
8. Brody, E. M. (1969). Follow-up study of applicants and non-applicants to a voluntary home. The Gerontologist, 9, 187-96.
9. Callahan, D. (1985). What do adult children owe aging parents? Hastings Center Report, 15, 32-37.
10. Cantor, M. H. (1983). Strain among caregivers: A study of experience in the United States. The Gerontologist, 23, 597-604.
11. Cantor, M., Johnson, J. (1978). The informal support system of the familylessel- derly-who takes over? Proceedings of the 31st Annual Meeting of the Gerontological Society of America. Dallas, Texas.
12. Collins, C., Stommel, M., King, S., Given, C. (1991). Assessment of the attitudes of family caregivers toward community services. The Gerontologist, 31, 756-761.
13. Comptroller General of the United States (1977). Report to Congress: The Well-Being of Older People in Cleveland, Ohio. Washington, DC: General Accounting Office.
14. Doty, P. (1986). Family care of the elderly: The role of public policy. Milbank Memorial Fund Quarterly, 64, 34-75.
15. Dubler, N. N. (1990). Accommodating the home care client: A look at rights and interests. In C. Zuckerman, N. N. Dubler, B. Collopy (Eds.), Home Health Care Options: A Guide for Older Persons and Concerned Families (pp. 141-165). New York: Plenum Press.
16. Dura, J. R., Stukenberg, K. W., Klecolt-Glaser, J. K. (1991). Anxiety and depressive disorders in adult children caring for demented parents. Psychology and Aging, 6, 467-473.
17. Dyck, A. (1984). Ethical aspects of care for the dying incompetent. Journal of the American Geriatrics Society, 32, 661-664.
18. Eggert, G., Granger, C., Morris, R., Pendleton, S. (1977). Caring for the patient with long-term disability. Geriatrics, 32, 102-19.
19. Erde E., Nadan, E., Scholl, T. (1988). On truth-telling and the diagnosis of Alzheimers disease. Journal of Family Practice, 4, 401-6.
20. Gatz, M. (personal communication to the first author, 1995).
21. General Accounting Office. (1998). Alzheimers disease: Estimates of prevalence in the United States (GAO/HEHS-98-16). Washington, DC: United States General Accounting Office, Health, Education and Human Services Division.
22. George, L. K., Gwyther, L. P. (1986). Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist, 26, 253-259.
23. Hanna, S. M. (1997). A developmental-interactional model. In T. D. Hargrave S. M. Hanna (Eds.), The aging family: New visions in theory, practice, and reality (pp. 101-130). New York: Brunner/Mazel.
24. Hanna, S. M., Hargrave, T. D., Miller, R. B. (1997). Future directions for family therapy with aging families. In T. D. Hargrave S. M. Hanna (Eds.), The aging family: New visions in theory, practice, and reality (pp. 295-307). New York: Brun- ner/Mazel.
25. Hanna, S. M., Hargrave, T. D. (1997). Integrating the process of aging and family therapy. In T. D. Hargrave S. M. Hanna (Eds.), The aging family: New visions in theory, practice, and reality (pp. 19-38). New York: Brunner/Mazel.
26. Hargrave, T. D., Anderson, W. T. (1997). Finishing well: A contextual family therapy approach to the aging family. In T. D. Hargrave S. M. Hanna (Eds.), The aging family: New visions in theory, practice, and reality (pp. 61-80). New York: Brunner/Mazel.
27. Harrison, C. (1993). Personhood, dementia and the integrity of a life. Canadian Journal on Aging, 12, 428-440.
28. Hasselkus, B. R. (1991). Ethical dilemmas in family caregiving for the elderly: Implications for occupational therapy. The American Journal ofOccupational Therapy, 45, 206-212.
29. Hasselkus, B. R., Stetson, S. A. (1991). Ethical dilemmas: The organization of family caregiving for the elderly. Journal of Aging Studies, 5, 99-110.
30. Hobbs, F. B., Damon, B. L. (1996). Current Population Reports, Special Studies, 65+ in the United States. P23-190. Washington, DC: U.S. Bureau of the Census and the National Institute on Aging.
31. Horowitz, A. (1985). Family caregiving to the frail elderly. In M. P. Lawton G. Maddox (Eds.), Annual Review of Gerontology and Geriatrics, Vol 5 (pp. 57-71). New York: Springer.
32. Houlihan, J. P. (1987). Families caring for the frail and demented elderly: A review of selected findings. Family Systems Medicine, 5, 344-356.
33. Imber-Black, E. (1999). Creating meaningful rituals for new life cycle transitions. In B. Carter M. McGoldrick (Eds.), The expanded family life cycle: Individual, family, and social perspectives (3rd ed.), (pp. 202-214). Needham Heights, MA: Allyn Bacon.
34. Jecker, N. A. S. (1991). Aging and ethics: Philosophical problems in gerontology. Clifton, NJ: Humana Press, Inc.
35. Johnson, C. (1983). Dyadic family relations and social support. Gerontologist, 23, 377-83.
36. Kapp, M. B. (1995). Legal and ethical issues in home-based care. Journal of Gerontological Social Work, 24, 31-45.
37. Kapp, M. B. (1991). Legal and ethical issues in family caregiving and the role of public policy. Home Health Care Services Quarterly, 12, 5-28.
38. King, S., Collins, C., Liken, M. (1995). Values and the use of community services. Qualitative Health Research, 5, 332-347.
39. Kitchener, K. S. (1986). Teaching applied ethics in counselor education: An integration of philosophical processes and philosophical analysis. Journal of Counseling Development, 64, 306-310.
40. Kitchener, K. S. (1985). Ethical principles and ethical decisions in student affairs. In H. J. Cannon R. D. Brown (Eds.), Applied ethics in student services. San Francisco: Jossey-Bass.
41. Kitchener, K. S. (1984). Intuition, critical evaluation and ethical principles: The foundation for ethical decisions in counseling psychology. Counseling Psychology, 12, 43-55.
42. Lustbader, W. (1991). Counting on kindness: The dilemmas of dependency. New York: The Free Press.
43. McAuley, W. J., Arling, G. (1984). Use of in-home care by very old people. Journal of Health and Social Behavior, 25, 54-64.
44. McGovern, T. F. (1996). Ethical Considerations. In R. L. Dippel J. T. Hutton (Eds.), Caregiving for the Alzheimer patient: A practical guide (pp. 193-203). Amherst, NY: Prometheus.
45. National Alliance for Caregiving and the American Association of Retired Persons. (1997). Family Caregiving in the U.S.: Findings from a National Survey. Bethesda, MD.
46. Pilisuk, M., Parks, S. H. (1988). Caregiving: When families need help. Social Work, September-October, 436-440.
47. Pratt, C. C., Kethley, A. J. (1988). Aging and family caregiving in the future: Implications for education and policy. Educational Gerontology, 14, 567-576.
48. Pratt, C., Schmall, V., Wright, S. (1987). Ethical concerns of family caregivers to dementia patients. The Gerontologist, 27, 632-637.
49. Roberto, K. A. (1994). Ethical challenges facing family caregivers of persons with Alzheimers disease. Activities, Adaptation, Aging, 18, 49-61.
50. Sarlach, A. (1987). Relieving feelings of strain among women with elderly mothers. Psychology of Aging, 2, 9-13.
51. Schulz, R., Brien, A. T., Bookwala, J., Fleissner, K. (1995). Psychiatric andphys- ical morbidity effects of dementia caregiving: Prevalence, correlates and causes. The Gerontologist, 35, 771-791.
52. Selig, S., Tomlinson, T., Hickey, T. (1991). Ethical dimensions of intergenerational reciprocity: Implications for practice. The Gerontologist, 31, 624-630.
53. Shanas, E. (1979a). Social myth as hypothesis: The case of the family relations of old people. The Gerontologist, 19, 3-9.
54. Shanas, E. (1979b). The family as a social support system in old age. The Gerontologist, 19, 169-74.
55. Shanas, E., Townsend, P., Wedderburn, D., Friis, H., Milhoj, P., Stehouwer, J. (1968). Old people in three industrial societies. New York: Atherton.
56. Shields, C. G., Wynne, L. C. (1997). The strength-vulnerability model of mental health and illness in the elderly. In T. D. Hargrave S. M. Hanna (Eds.), The aging family: New visions in theory, practice, and reality (pp. 131-160). New York: Brun- ner/Mazel.
57. Simmel, G. (1950). The sociology of Georg Simmel, trans. Kurt H. Wolf, New York: The Free Press.
58. Stone, R., Cafferata, G. L. Sangl, J. (1987). Caregivers of the frail and elderly: A national profile. The Gerontologist, 27, 677-683.
59. Turnbull, S. (1994). Ethical issues in the care of the patient with Alzheimers Disease, 2nd Edition. In R. C. Hamdy, J. M. Turnbull, W. Clark, M. M. Lancaster (Eds.)
60. Alzheimers disease: A handbook for caregivers (pp. 283-295). St. Louis, MO: Mosby
61. U.S. Department of Health, Education and Welfare (1978). HEW taskforce report on long-term care. Washington, DC: Office of the Secretary, Special Assistant to the Secretary
62. Veatch, R. (1981). A theory of medical ethics. New York: Basic Books.
63. Walsh, F. (1999). Families in later life: Challenges and opportunities. In B. Carter M. McGoldrick (Eds.), The expanded family life cycle: Individual, family, and social perspectives (3rded.), (pp. 307-326). Needham Heights, MA: Allyn Bacon.
64. Zygmond, M. J., Boorhem, H. (1989). Ethical decision making in family therapy. Family Process, 28, 269-280.