The journey with dementia from the perspective of bereaved family caregivers: a qualitative descriptive study.

BACKGROUND: With increasing rates of dementia among older adults, many people will be affected by this disease; either by having the disease or by caring for a relative with dementia. Due to a shift toward home and community-based care there will be an increase in the number of family caregivers caring for persons with dementia. The caregiving experience in the dementia journey is influenced by many factors. Currently there is a paucity of research that examines the dementia caregiving experience from the perspective of bereaved caregivers or that presents the complete caregiving journey. The purpose of this study was to describe the dementia caregiving journey as revealed by bereaved family caregivers. METHODS: This study utilized qualitative description to describe the overall dementia caregiving journey as told by 11 bereaved caregivers. Open-ended interviews resulted in rich detailed descriptions of the caregiving journey from before a dementia diagnosis and into bereavement. RESULTS: Findings are discussed based on the following caregiving themes: (a) getting a diagnosis; (b) managing at home; (c) transition to long-term care; (d) end of life; and (e) grief in bereavement. Subthemes reflect the dementia caregiving journey using the words of the participants. Participants spoke of grieving throughout the caregiving experience. CONCLUSIONS: Bereaved caregivers have similar experiences to active caregivers over comparable points in the journey with dementia. Findings from this work contribute new understanding to the literature around the unique perspective of bereaved caregivers, while presenting the overall dementia caregiving journey.

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

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.

Interventions for caregivers of persons with dementia: a systematic review.

The prevalence of dementia in older adults in increasing. Due to cuts in funding for formal support, many families are having to provide care for a loved one with dementia at home. This systematic review gathered and synthesized information on interventions designed to enhance the well-being of caregivers of people with dementia. A search of the literature resulted in 36 relevant studies. Of these, 11 were rated as strong, 11 as moderate, 13 as weak, and 1 as poor. This paper focuses on the strong studies. No one intervention had an overall significant impact on the well-being of caregivers. Although several interventions have been shown to be of benefit to caregivers, non-significant findings were more common. Further investigation is greatly needed. Systematic reviews are an important means of guiding consumers and practitioners in making evidence-based decisions.