Family Caregivers' Perspectives on Challenges and Support Needs in Hospital-Based Palliative Care for Persons Living...

Palliative care needs of hospitalized persons living with dementia (PLWD) and their family caregivers remain poorly understood. This mixed-methods study explored caregivers' perspectives on challenges and support needs when hospitalized PLWD received specialist palliative care consultations. Thirty-two caregivers were recruited from two hospitals; 18 completed interviews and surveys, and 14 completed surveys only. Participants were racially and ethnically diverse (19% Black or African American, 34% Latino or Hispanic). Most identified as women (65%) and adult children (56%). Commonly reported challenges included managing health issues (59%), emotional distress (56%), and decision-making (47%). Thematic analysis of interviews revealed three themes: the value of palliative care in navigating end-of-life uncertainty in dementia, uncoordinated and reactive care during hospitalization, and lack of guidance for post-hospital transitions. While caregivers valued palliative care for emotional and decision-making support, findings underscore the need for earlier integration and improved coordination across hospital teams to better support families.