"They're exhausted": Hospice Staff Views on Caring for Patients and Families Impacted By Dementia

Medicare's Hospice Benefit was originally designed for cancer care, but now over half of hospice patients have dementia. To optimize hospice for people living with dementia (PLWD) and their caregivers, we must understand what hospice professionals view as the most important challenges and facilitators to caring for this population.

To assess hospice professionals' perspectives on hospice care for patients and families impacted by dementia.

Semi-structured interviews with multidisciplinary hospice professionals in 3 hospice agencies in California. We used inductive and deductive thematic analysis; deductive analyses were grounded in the socioecological model.

32 participants were included (9 nurses, 5 home health aides, 3 social workers, 3 chaplains, 2 NPs, 2 MDs, 9 leaders; 22% male, average age 45). Participants highlighted how challenges and facilitators spanned the socioecological domains, including hospice-specific issues as well as the broader context of the dementia experience. Challenges Individual-level: The prolonged decline of PLWD drained family's physical, emotional, and financial resources. Community/policy-level: Patient and family needs were unmet by local facility capacity and the clinical course of PLWD was a poor fit with hospice eligibility criteria. Facilitators Individual-level: Clinicians' positive attitudes emphasizing dignity of PLWD informed expert communication intended to develop connection and trust. Community/policy-level: Care coordination across systems supported patients along the continuum of decline.

Optimizing hospice for patients and families impacted by dementia requires addressing both hospice-specific practice and policy, as well as broader dementia care infrastructure.