Family Caregiver Perspectives on Advance Care Planning Discussions for Residents With Dementia Led by Trained Nursing Home Staff: Insights From the APPROACHES Project.
Susan E Hickman, Hillary D Lum, Kathleen T Unroe
PMID 41802711WHAT IT FOUND
Caregivers of nursing home residents with dementia often described advance care planning as mainly code status.
They valued staff who listened, explained clearly, did not push, and followed through, but vague information and uncertainty made decisions hard.
Key findings
01Caregivers often reported code status as the only decision when asked directly about the overall care plan and goals of care.
02Support from the ACP Specialist included listening, emotional support, advice about the resident's status, respect for the caregiver's pace, understandable information, and answering questions.
03Many caregivers described the surrogate decision-maker role as emotionally heavy, and choices such as DNR or limiting treatment were perceived as hard.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Qualitative interviews reflect only the experiences of the 28 caregivers interviewed and may not be generalizable. Participants were largely white and highly educated, so perspectives from marginalized communities may differ. Caregivers were interviewed only from intervention nursing homes with robust implementation, so experiences may not reflect other homes in the trial. The study did not examine nursing home quality or resource factors that may affect advance care planning.
Declared interests
The study was supported by NIH award R33AG057463. Two authors declared no conflicts of interest, and one author is the founder of Probari, a healthcare start-up focused on clinical support of nursing home care.
The easy way to misread this
Do not read this as proof that training nursing home staff improves dementia care or that families prefer code status. It is a qualitative interview study of 28 caregivers, so it describes their experiences and cannot show that the ACP Specialist Program caused better outcomes.