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.