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

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