Lay Caregivers' Experiences With Caring for Persons With Dementia: A Phenomenological Study.
Ann M Mayo, Kathleen Siegle, Eileen Savell and 3 others
PMID 32491183WHAT IT FOUND
Dementia caregivers described uncertainty, loneliness and frustration, plus gratefulness and joy.
Six of eleven had no palliative care knowledge and none had experience with it, so nurses should not assume caregivers know palliative care.
Key findings
01The themes included uncertainty, loneliness, frustration, and positive feelings such as gratefulness, joy and relief.
02Six of the 11 participants had no knowledge of palliative care, and no participant had experience with it.
03Five participants had heard the phrase palliative care, and most described hospice care.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Only 11 caregivers were interviewed, all from one small community, so the themes may not fit other places. All participants were white Caucasian and 10 of the 11 were women, so the findings do not show how other racial, ethnic or male caregivers experience dementia care. Participants were recruited through a faith-based caregiver support group and snowball sampling, so prior support group experience may have shaped what they said. No participant had experience with palliative care, so the paper cannot show how palliative care affects caregivers. The study reports feelings and themes, not whether any service or advice changed outcomes.
Declared interests
The supplied text does not report funding or conflicts of interest.
The easy way to misread this
Do not read this as evidence that palliative care reduces caregiver burden. No participant had experience with palliative care, and the study reports lived experience, not treatment effects.