RPD210 - “They’re exhausted”: Interdisciplinary Hospice Staff Perspectives on Caring for Families Impacted by Dementia

Key Message : People with dementia comprise over 50% of hospice enrollees. This qualitative study of 32 interdisciplinary hospice staff indicated that efforts to improve hospice care for PWD should focus on teaching communication techniques, community and policy interventions to enhance long-term care services, and modifying hospice eligibility to match the dementia trajectory.

Abstract:

Background: People with dementia (PWD) comprise over 50% of hospice enrollees. While prior studies have examined specific aspects of care (e.g. behavioral symptoms, advanced care planning) for PWD in hospice (1-4), no studies have assessed hospice staff views on challenges and facilitators to caring for PWD more generally.

Objective: To assess hospice staff clinicians' perspectives on the most important challenges and facilitators to caring for PWD in hospice.

Methods: We conducted semi-structured interviews with interdisciplinary hospice staff in multiple hospice agencies located in a metropolitan region. We used both inductive and deductive thematic analysis; deductive analyses incorporated the socioecological model.

Preliminary results: Among 32 participants across 3 agencies, 9 were nurses, 5 home health aides, 3 social workers, 3 chaplains, 2 NPs, 2 MDs, and 9 leaders; 22% were male, average age of 45. Challenges spanned individual/interpersonal, organizational/community, and societal/policy domains. Participants emphasized the toll of dementia’s long, slow, and unpredictable decline that drained family physical, emotional, and financial resources. Needs were unmet by local facility capacity and were a poor fit with hospice eligibility criteria. Facilitators included clinicians using expert communication techniques (both verbal and nonverbal) to build connection and trust with patients and families, as well as hospice agencies providing wraparound services—such as care coordination before and after enrollment—to support patients and families throughout the trajectory of decline.

Implications: Efforts to improve care for PWD in hospice should focus on improving clinician/patient interactions in hospice, community and policy interventions to increase access to long-term care services, and modifying hospice eligibility to match the dementia trajectory.

References: 1. Harrison KL, Allison TA, Garrett SB, et al. Hospice Staff Perspectives on Caring for People with Dementia: A Multisite, Multistakeholder Study. Journal of palliative medicine. Mar 4 2020;doi:10.1089/jpm.2019.0565

2. Sadowska K, Turnwald M, O'Neil T, Maust DT, Gerlach LB. Behavioral symptoms and treatment challenges for patients living with dementia: Hospice clinician and caregiver perspectives. Journal of the American Geriatrics Society. Dec 16 2024;doi:10.1111/jgs.19320

3. Park T, Tiwari A, Luth E, et al. Perspectives of Hospice Medical Directors on Challenges and Solutions for Improving Care for Persons Living With Dementias (PLWD) and Their Caregivers. The American journal of hospice & palliative care. Aug 20 2025:10499091251369112. doi:10.1177/10499091251369112

4. Wladkowski SP, Wallace CL. Current Practices of Live Discharge from Hospice: Social Work Perspectives. Health Soc Work. Feb 1 2019;44(1):30-38. doi:10.1093/hsw/hly040