Family Caregivers’ Perspectives on Challenges and Support Needs in Hospital-Based Palliative Care for Persons Living With Dementia

This is the authors' abstract. We don't add key points for this paper.

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.