Abstract
BackgroundWith 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.MethodsThis 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.ResultsFindings 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.ConclusionsBereaved 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.
Highlights
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
Participants tended to describe their journey with dementia in a manner that fit with the major categories of getting a diagnosis, managing at home, transitioning to long-term care (LTC), end of life, and grief in bereavement
Another theme that emerged repeatedly was the grieving process throughout the caregiving experience. This data provides valuable insights in the experiences of bereaved caregivers even following the death of their relative, which can help to bridge the gap in the current literature related to the end-of-life experiences of caregivers
Summary
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. Some examples of positive aspects of family caregiving include a sense of self-efficacy, feeling of accomplishment, a sense of meaning, satisfaction, wellbeing and improved quality of relationships [12]. These positive experiences may help sustain family members in their work as caregivers [11]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
