Hostname: page-component-7dd5485656-kp629 Total loading time: 0 Render date: 2025-10-31T05:58:32.427Z Has data issue: false hasContentIssue false
  • English
  • Français

The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review

Published online by Cambridge University Press:  23 October 2012

Shelley C. Peacock
Shelley C. Peacock*
Affiliation:
College of Nursing, University of Saskatchewan, Saskatoon, Canada
*
Address correspondence and reprint requests to: Shelley Peacock, College of Nursing, University of Saskatchewan, 414 St. Andrew's College, 1121 College Drive, Saskatoon SK S7N 0W3Canada. E-mail: shelley.peacock@usask.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

The number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

Keywords

DementiaFamily caregivingEnd of lifeLiterature review

Information

Type
Review Articles
Information
Palliative & Supportive Care , Volume 11 , Issue 2 , April 2013 , pp. 155 - 168
Copyright
Copyright © Cambridge University Press 2012

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

REFERENCES

Allen, R., Kwak, J., Lokken, K., et al. (2003). End-of-life issues in the context of Alzheimer's disease. Alzheimer's Care Quarterly, 4, 312–330.Google Scholar
Alzheimer's Disease International. (2009). World Alzheimer Report 2009. http://www.alz.co.uk/research/files/WorldAlzheimerReport.pdf.Google Scholar
Bodnar, J. & Kiecolt-Glaser, J. (1994). Caregiver depression after bereavement: Chronic stress isn't over when it's over. Psychology and Aging, 9, 372–380.CrossRefGoogle ScholarPubMed
Boerner, K., Horowitz, A. & Schulz, R. (2004). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging, 19, 668–675.Google Scholar
Canadian Institute for Health Information. (2010). Supporting Informal Caregivers – The Heart of Home Care. http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=PG_3112_E&cw_topic=3112&cw_rel=AR_2129_E.Google Scholar
Diamond, J. (2006). A Report on Alzheimer's Disease and Current Research. Toronto: Alzheimer Society of Canada.Google Scholar
Farran, C. (1997). Theoretical perspectives concerning positive aspects of caring for elderly persons with dementia: Stress/adaptation and existentialism. Gerontologist, 37, 250–256.Google Scholar
Feldman, H., Jacova, C., Robillard, A., et al. (2008). Diagnosis and treatment of dementia: 2. Diagnosis. Canadian Medical Association Journal, 178, 825–836.Google Scholar
Forbes, S., Bern-Klug, M. & Gessert, C. (2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32, 251–258.Google Scholar
Gill, T., Gahbauer, E., Han, L., et al. (2010). Trajectories of disability in the last year of life. New England Journal of Medicine, 362, 1173–1180.Google Scholar
Hebert, R., Dang, Q. & Schulz, R. (2006). Preparedness for death of a loved one and mental health in bereaved caregivers of patients with dementia: Findings from the REACH study. Journal of Palliative Medicine, 9, 683–693.Google Scholar
Hebert, R. & Schultz, R. (2006). Caregiving at the end of life. Journal of Palliative Medicine, 9, 1174–1187.CrossRefGoogle ScholarPubMed
Herrmann, N. & Gauthier, S. (2008). Diagnosis and treatment of dementia: 6. Management of severe Alzheimer's disease. Canadian Medical Association, 2, 1279–1287.Google Scholar
Kuhn, D. (2001). Living with loss in Alzheimer's Disease. Alzheimer's Care Quarterly, 2, 12–22.Google Scholar
Lindgren, C., Connelly, C. & Gaspar, H. (1999). Grief in spouse and children caregivers of dementia patients. Western Journal of Nursing Research, 21, 521–537.Google Scholar
Lynn, J. (2001). Serving patients who may die soon and their families: The role of hospice and other services. Journal of the American Medical Association, 285, 925–932.CrossRefGoogle ScholarPubMed
Meuser, T. & Marwit, S. (2001). A comprehensive, stage-sensitive model of grief in dementia caregiving. Gerontologist, 41, 658–670.Google Scholar
Mitchell, S., Teno, J. & Kiely, D., (2009). The clinical course of advanced dementia. New England Journal of Medicine, 361, 1529–1538.Google Scholar
Morgan, D. & Laing, G. (1991). The diagnosis of Alzheimer's disease: Spouse's perspectives. Qualitative Health Research, 1, 370–387.Google Scholar
Neundorfer, M., McClendon, M., Smyth, K., et al. (2001). A longitudinal study of the relationship between levels of depression among persons with Alzheimer's disease and levels of depression among their family caregivers. Journals of Gerontology Series B-Psychological Sciences and Social Sciences, 56, P301–P313.CrossRefGoogle ScholarPubMed
Ory, M., Yee, J., Tennstedt, S., et al. (2000). The extent and impact of dementia care: Unique challenges experienced by family caregivers. In Handbook of Dementia Caregiving: Evidenced-Based Interventions for Family Caregivers, Schulz, R. (ed.), pp. 1–32. New York, NY: Springer Publishing.Google Scholar
Peacock, S. & Forbes, D. (2003). Interventions for caregivers of persons with dementia: A systematic review. Canadian Journal of Nursing Research, 35, 88–107.Google ScholarPubMed
Sanders, S., Butcher, H., Swails, P., et al. (2009). Portraits of caregivers of end-stage dementia patients receiving hospice care. Death Studies, 33, 521–556.Google Scholar
Sanders, S. & Swails, P. (2009). Caring for individuals with end-stage dementia at the end of life: A specific focus on hospice social workers. Dementia, 8, 117–138.CrossRefGoogle Scholar
Schulz, R., Boerner, K., Shear, K., et al. (2006). Predictors of complicated grief among dementia caregivers: A prospective study. American Journal of Geriatric Psychiatry, 14, 650–658.CrossRefGoogle ScholarPubMed
Schulz, R., Mendelsohn, A., Haley, W., et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936–1942.Google Scholar
Shanley, C., Russell, C., Middleton, H., et al. (2011). Living through end-stage dementia: The experiences and expressed needs of family carers. Dementia, 10, 325–340.Google Scholar
Treloar, A., Crugel, M. & Adamis, D. (2009). Palliative and end of life care of dementia at home is feasible and rewarding. Dementia, 8, 335–347.Google Scholar
Wisniewski, S., Coon, D., Marcus, S., et al. (2003). The resources foe enhancing Alzheimer's caregiver health (REACH): Project design and baseline characteristics. Psychology and Aging, 18, 375–384.Google Scholar
Whittemore, R. & Knafl, K. (2005). The integrative review: Updated methodology. Journal of Advanced Nursing, 52, 546–553.CrossRefGoogle ScholarPubMed