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A literature review of palliative care, end of life, and dementia

Published online by Cambridge University Press:  27 September 2006

KERSTIN STIEBER ROGER
KERSTIN STIEBER ROGER
Affiliation:
Manitoba Palliative Care Research Unit, CancerCare Manitoba, Winnipeg, Manitoba, Canada
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Abstract

Objective: Little attention has been paid in research to the palliative care of those dying with dementia. This literature review summarizes current research in the social sciences, including medical sociology on palliative care in the example of dementia.

Methods: A designated set of search words was applied to a comprehensive set of university-based search engines to ensure that relevant social science research since 200 was included.

Results: Primary themes discussed in the article include person-centered care, grief, agitation, aggression, pain management, care provision, training and education, decision-making, primary settings of care, and spirituality and dignity. Other key gaps in the literature are discussed.

Significance of the results: Given the projected increase within the next 20 years of people dying with dementia (Hanrahan et al., 2001), palliative care for those dying with dementia will become more relevant than ever.

Keywords

DementiaEnd of lifeGriefPalliative carePerson-centered care
Type
REVIEW ARTICLES
Information
Palliative & Supportive Care , Volume 4 , Issue 3 , September 2006 , pp. 295 - 303
Copyright
© 2006 Cambridge University Press

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References

REFERENCES

Abbey, J. (2004). Ageing, dementia, and palliative care. In Palliative Care Nursing: A Guide to Practice, O'Connor, M. & Aranda, S. (eds.), pp. 313–326. Melbourne: AusMed Publications.
Albinsson, L. & Strang, P. (2002). A palliative approach to existential issues and death in end-stage dementia care. Journal of Palliative Care, 18, 168–174.Google Scholar
Allen, S.M. (1994). Gender difference in spousal caregiving and unmet need for care. Journal of Gerontology, 49, S187–S195.Google Scholar
Allen, R.S., DeLaine, S.R., Chaplin, W.F., et al. (2003). Advance care planning in nursing homes: Correlates of capacity and possession of advance directives. The Gerontologist, 43, 309–317.Google Scholar
Aminoff, B.Z. & Adunsky, A. (2004). Dying dementia patients: Too much suffering, too little palliation. American Journal of Alzheimer's Disease and Other Dementias, 19, 243–247.Google Scholar
Arehart-Treichel, J. (2004). For Alzheimer's patients, life may be better than caregivers think. Psychiatric News, 39, 14.Google Scholar
Aupperle, P.M., MacPhee, E.R., Strozeski, J.E., et al. (2004). Hospice use for the patient with advanced Alzheimer's disease: The role of the geriatric psychiatrist. American Journal of Alzheimer's Disease and Other Dementias, 19, 94–104.Google Scholar
Barron, J.S., Duffey, P.L., Byrd, L.J., et al. (2003). Informed consent for research participation in frail older persons. Aging Clinical and Experimental Research, 16, 79–85.Google Scholar
Binstock, R., Post, S., & Whitehouse, P. (1992). Dementia and Aging: Ethics, Values, and Policy Choices. Baltimore: Johns Hopkins University Press.
Bourgeois, M. S. (2002). “Where is my wife and when am I going home”? The challenge of communicating with persons with dementia. Alzheimer's Care Quarterly, 3, 132–144.Google Scholar
Briller, S., Proffitt, M., Perez, K., et al. (2001). Creating Successful Dementia Care Settings. (vol. 2) Winnipeg: Health Professions Press.
Campbell, M. & Guzman, J. (2004). A proactive approach to improve end of life care in a medical intensive unit for patients with terminal dementia. Critical Care Medicine, 32, 1839–1843.Google Scholar
Canadian Study of Health and Aging Group (1994). Canadian Study of Health and Aging. Ottawa.
Chochinov, H. (2002). Dignity-conserving care—A new model for palliative care: Helping the patient feel valued. JAMA, 287, 2253–2260.Google Scholar
Chochinov, H.M. & Breitbart, W. (2000). Handbook of Psychiatry in Palliative Medicine. Oxford: Oxford University Press.
Coon, D., Thompson, L., Steffen, A., et al. (2003). Anger and depression management: Psychoeducational skill training interventions with women caregivers of a relative with dementia. The Gerontologist, 43, 678–689.Google Scholar
Cotrell, V. & Hooker, K. (2005). Possible selves of individuals with Alzheimer's disease. Psychology and Aging, 20, 285–294.Google Scholar
Cox, S. & Cook, A. (2002). Caring for people with dementia at the end of their life. In Palliative Care for Older People in Care Homes, Hockley, J. & Clark, D. (eds.). Buckingham: Open University Press.
Cox, S. & Watchman, K. (2004). Death and dying. In Dementia and Social Inclusion, Innes, A., Archibald, C. & Murphy, C. (eds.), pp. 86–103. London: Jessica Kingsley.
de Vries, K., Sque, M., Bryan, K., et al. (2003). Variant Creutzfeldt-Jakob disease: Need for mental health and palliative care team collaboration. International Journal of Palliative Nursing, 9, 512–520.Google Scholar
Doka, K. (2002). Disenfranchised grief. In Living with Grief: Loss in Later Life, Doka, K.J. (ed.). Washington, DC: Hospice Foundation of America.
Dresser, R. (1995). Dworkin on dementia. Hastings Center Report, 25, 32–39.Google Scholar
Eustace, A., Coen, R., Walsh, C., et al. (2002). A longitudinal evaluation of behavioural and psychological symptoms of probably Alzheimer's disease. International Journal of Geriatric Psychiatry, 17, 968–973.Google Scholar
Evans, B.D. (2002). Improving palliative care in the nursing home: From a dementia perspective. Journal of Hospice & Palliative Nursing, 4, 91–99.Google Scholar
Fabiano, L. (2002). Dancing with Dementia: Success with Supportive Therapy, 3rd ed. Port Perry, ON: Pheasant Ridge Creations, Inc.
Farran, C., Loukissa, D., Lindeman, D., et al. (2004). Caring for self while caring for others. Journal of Gerontological Nursing, 30, 38–46.Google Scholar
Francis, L.P. (2001). Decision making at the end of life: Patients with Alzheimer's or other dementias. Georgia Law Review, 35, 539–592.Google Scholar
Furlini, L. (2001). The parent they knew and the “New” parent: Daughters' perceptions of dementia of the Alzheimer's type. Home Health Care Services Quarterly, 20, 21–38.Google Scholar
Gallagher-Thompson, D. & Devries, H. (1994). Coping with frustration classes: Development and preliminary outcomes with women who care for relatives with dementia. The Gerontologist, 34, 548–552.Google Scholar
Goldenberg, D., Holland, J., & Schachter, S. (2000). Palliative care in the chronically mentally ill. In Handbook of Psychiatry in Palliative Medicine, Holland, J., Schacter, S., Chochinov, H.M. & Breitbart, W. (eds.). Oxford: Oxford University Press.
Grant, K., Amaratunga, C., Armstrong, P., et al. (2004). Caring for/Caring about: Women, Home Care, and Unpaid Caregiving. Aurora, Ontario: Garamond Press.
Haak, N.J. (2002). Maintaining connections: Understanding communications from the perspective of persons with dementia. Alzheimer's Care Quarterly, 3, 116–131.Google Scholar
Hanrahan, P., Luchins, D., & Murphy, K. (2001). Palliative care for patients with dementia. In Palliative Care for Non-Cancer Patients, Addington-Hall, J. & Higginson, I. (eds.), pp. 114–124. New York: Oxford University Press.
Hellzen, O., Kristianson, L., & Norbergh, K.G. (2003). Nurses' attitudes towards older residents with long-term schizophrenia. Journal of Advanced Nursing, 43, 616–622.Google Scholar
Hertogh, C., Mei The, B., Miesen, B., et al. (2004). Truth telling and truthfulness in the care for patients with advanced dementia: An ethnographic study in Dutch nursing homes. Social Science and Medicine, 59, 1685–1693.Google Scholar
Heru, A., Ryan, C.E., & Iqbal, A. (2004). Family functioning in the caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 19, 533–537.Google Scholar
Hong, C.Y., Goh, L.G., & Lee, H.P. (1996). The advance directive—A review. Singapore Medical Journal, 37, 411–418.Google Scholar
Jansson, L., Norberg, A., Sandman, O.-P., et al. (1993). Interpreting facial expressions in patients in the terminal stage of the Alzheimer disease. OMEGA, the Journal of Death and Dying, 26, 309–324.Google Scholar
Keay, T.J. (2004). Issues of loss and grief in long-term care facilities. Washington, DC: American Health Care Association.
Kitwood, T. (1997). Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press.
Kunz, R. (2003). Palliative care for patients with advanced dementia: Evidence-based practice replaced by values-based practice. Zeitschrift fur Gerontologie und Geriatrie, 36, 355–359.Google Scholar
Kutner, N.G., Brown, P.J., Stavinsky, R.C., et al. (2000). “Friendship” interactions and expression of agitation among residents of a dementia care unit: Six-month observation study. Research on Aging, 22, 188–205.Google Scholar
Lindgren, C.L., Connelly, C.T., & Gaspar, H.L. (1999). Grief in spouse and children caregivers of dementia patients. Western Journal of Nursing Research, 21, 521–537.Google Scholar
Loos, C. & Bowd, A. (1997). Caregivers of persons with Alzheimer's disease: Some neglected implications of the experience of personal loss and grief. Death Studies, 21, 501–514.Google Scholar
Lyness, J.M. (2004). End-of-life care: Issues relevant to the geriatric psychiatrist. American Journal of Geriatric Psychiatry, 12, 457–472.Google Scholar
Magai, C., Cohen, C.I., & Gomberg, D. (2002). Impact of training dementia caregivers in sensitivity to nonverbal emotional signals. International Psychogeriatrics, 14, 25–38.Google Scholar
McGilton, K.S. (2004). Relating well to persons with dementia: A variable influencing staffing and quality care outcomes. Alzheimer's Care Quarterly, 5, 71–80.Google Scholar
McKhann, G., Drachman, D., Folstein, M., et al. (1984). Clinical diagnosis of Alzheimer's disease: Report of the NINCHDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease. Neurology, 34, 939–944.Google Scholar
Meuser, T.M. & Marwit, S.J. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. The Gerontologist, 41, 658–670.Google Scholar
Miller, K. (2004). Quality end of life care in patients with dementia. American Family Physician.Google Scholar
Mitchell, S.L., Kiely, D.K., & Gillick, M.R. (2003). Nursing home characteristics associated with tube feeding in advanced cognitive impairment. Journal of the American Geriatrics Society, 51, 75–79.Google Scholar
Mitchell, S.L., Kiely, D., & Hamel, M. (2004). Dying with advanced dementia in a nursing home. Archive of Internal Medicine, 164, 321–326.Google Scholar
Molloy, D.W., Darzins, P., & Strang, D. (1999). Capacity to Decide. Troy, ON: New Grange Press.
Moskowitz, C.B. & Marder, K. (2001). Palliative care for people with late-stage Huntington's disease. Neurologic Clinics, 19, 849–863.Google Scholar
O'Malley, K.J., Orengo, C.A., Kunik, M.E., et al. (2002). Measuring aggression in older adults: A latent variable modeling approach. Aging & Mental Health, 6, 231–238.Google Scholar
O'Rourke, N. & Tuokko, H. (2004). Caregiver burden and depressive symptomology: The association between constructs over time. Clinical Gerontologist, 27, 41–52.Google Scholar
Perry, J. (2002). Wives giving care to husbands with Alzheimer's disease: A process of interpretive caring. Research in Nursing & Health, 25, 307–316.Google Scholar
Pessin, H., Rosenfeld, B., & Breitbart, W. (2002). Assessing psychological distress near the end of life. American Behavioral Scientist, 46, 357–372.Google Scholar
Post, S. (1995). The moral challenge of Alzheimer's disease. Baltimore: Johns Hopkins University Press.
Reimer, M.A., Slaughter, S., Donaldson, C., et al. (2004). Special care facility compared with traditional environments for dementia care: A longitudinal study of quality of life. Journal of the American Geriatrics Society, 52, 1085–1092.Google Scholar
Rich, B.A. (1998). Personhood, patienthood, and clinical practice: Reassessing advanced directives. Psychology Public Policy Law, 4, 610–628.Google Scholar
Roger, K. (2005). Exploring memory loss: A study starts. Journal of Dementia Care, 13, 36.Google Scholar
Roger, K. (2006). Understanding social changes in the experience of dementia. Alzheimer Care Quarterly, 7, 185–193.Google Scholar
Roger, K. (in press). Exploring social changes in the example of dementia. Alzheimer Care Quarterly.
Sanders, S. & Saltz Corley, C. (2003). Are they grieving? A qualitative analysis examining grief in caregivers of individuals with Alzheimer's disease. Social Work in Health Care, 37, 35–53.Google Scholar
Shega, J.W., Levin, A., Hougham, G.M., et al. (2003). Palliative EXCELLENCE in Alzheimer CARE EFFORTS (PEACE): A program description. Journal of Palliative Medicine, 6, 315–320.Google Scholar
Small, J.A. & Gutman, G. (2002). Recommended and reported use of communication strategies in Alzheimer caregiving. Alzheimer Disease and Associated Disorders, 16, 270–278.Google Scholar
Snow, L., Rapp, M., & Kunik, M. (2005). BODIES mnemonic helps caregivers relay pain-related signs, symptoms to physicians and nursing staff. The Psychiatric Consultant, 60, 22–25.Google Scholar
Strauss, G. & Nelson, B.J. (1996). Palliative care enrichment in geropsychology fellowship. Educational Gerontology, 22, 775–780.Google Scholar
Sweeting, H. & Gilhooly, M. (1997). Dementia and the phenomenon of social death. Sociology of Health & Illness, 19, 93–117.Google Scholar
Wilkinson, H. (2002). The Perspectives of People with Dementia. London: Jessica Kingsley Publishers.
Zeisel, J., Silverstein, N.M., Hyde, J., et al. (2003). Environmental correlates to behavioural health outcomes in Alzheimer's special care units. The Gerontologist, 43, 697–711.Google Scholar