Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis.
Melissa J Armstrong, Slande Alliance, Pamela Corsentino and 3 others
PMID 31902223WHAT IT FOUND
Family caregivers of people who died with Lewy body dementia described end-of-life barriers: delayed diagnosis, staff unawareness, antipsychotic reaction concerns, poor coordination, cost, and hospice eligibility delays.
Key findings
01Caregivers reported that lack of DLB knowledge among physicians and staff was a barrier to end-of-life care.
02Families described difficulty finding or keeping a facility willing to accept a person with DLB because of behavioral concerns and safety worries.
03Some families waited for hospice eligibility, and hospice medication concerns included negative reactions to haloperidol.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The interviews were with family caregivers, not patients, so they describe perceived barriers rather than measured clinical outcomes. Most participants were women (27/30), and the study collected only gender and role, so other caregiver groups are not represented. All but one participant were U.S.-based, so findings may not apply to other health systems. Recruitment came from a Lewy body dementia association survey, so families with strong views or particular experiences may be overrepresented. No member checking was used because interviews were transcribed by a professional service. The interviewer was a DLB specialist, which may affect participants' responses.
Declared interests
No funding or conflict-of-interest statement is given. The Lewy Body Dementia Association helped recruit participants and contributed to the interview guide.
The easy way to misread this
Do not conclude that antipsychotics caused death in DLB from this study. Some people received haloperidol without apparent adverse effects, while others had negative reactions. The study did not compare outcomes by medication.