How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?
Jannie A Boogaard, Jenny T van der Steen, Alice H de Boer and 1 others
PMID 30983373WHAT IT FOUND
Caregivers of people with dementia at end of life reported the highest burden, but once care demands and support were considered, burden tracked patient dependence, hours of care, and support gaps.
Positive experiences were separate: end-of-life care without dementia had the most.
Key findings
01Caregivers providing end-of-life care to a person with dementia reported the highest burden, but in the full model dementia and end-of-life care no longer explained burden differences.
02End-of-life care without dementia was associated with the most positive experiences, and non-end-of-life dementia care with the fewest; these differences remained after adjustment.
03Burden and positive experiences were not significantly correlated, so they are separate outcomes.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The dementia end-of-life caregiver group was small, with 41 caregivers. End-of-life status was based on death in the 12 months before interview, so caregivers of people who died shortly after the interview were not counted as end-of-life, which may have underestimated differences. Dementia was not confirmed with diagnostic tools; it was reported by the informal caregiver. Data were collected retrospectively, so caregivers may not have accurately recalled care outcomes. The survey did not include end-of-life-specific questions about treatment dilemmas, hospital or hospice transfers, or what made a good death. Because the study used survey data collected after the care period, it cannot show that dementia or end-of-life care caused caregiver outcomes.
Declared interests
The authors declared no potential conflicts of interest and received no financial support for the research, authorship, or publication. The funder named is DELA Charity Fund, The Netherlands.
The easy way to misread this
Do not conclude that dementia at end of life directly causes caregiver burden. After the full model, burden differences by dementia and end-of-life status were no longer significant, and the authors attributed them to patient dependence, care intensity, and support.