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

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.

The experience of psychological distress in family caregivers of people with dementia: A cross-sectional study

“…Significant correlations were found between the BI total score and the following dimensions of the BSI: obsessive–compulsion, interpersonal sensitivity, depression, and phobic anxiety. These study findings corroborate those of Peacock, who explored the existing scientific evidence and identified the literature gaps related to the experiences of family caregivers of persons with dementia showing high levels of dependence on self‐care.…”

2020 Alzheimer's disease facts and figures

“…Some studies suggest that distress remains unchanged or even increases after a relative is admitted to a residential care facility, but other studies have found that distress declines following admission 335,374,375 The demands of caregiving may intensify as people with dementia approach the end of life 376 . In the year before the death of the person living with dementia, 59% of caregivers felt they were “on duty” 24 hours a day, and many felt that caregiving during this time was extremely stressful 377 .…”

“…335,374,375 • The demands of caregiving may intensify as people with dementia approach the end of life. 376 In the year before the death of the person living with dementia, 59% of caregivers felt they were "on duty"…”

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia

“…Currently, researchers are beginning to conduct qualitative and quantitative studies that address the experience of caregivers who care for a family member at the end of life (Peacock, 2012). However, there remains more to be done to add clarity and understanding within this context, particularly for those who care for a relative with dementia (Allen et al, 2003).…”