"I needed someone to hold my hand": Experiences and Unmet Palliative Care Needs at Home from the Perspective of People with Dementia and Caregivers (GP741)

Objectives: • Describe 1-2 examples of experiences living and receiving care at home from the perspective of people with dementia and/or family caregivers • Describe 1-2 examples of unmet palliative care needs from the perspective of people with dementia and/or family caregivers receiving or providing care at home.  Importance: People with dementia (PWD) and their families represent a growing population who is increasingly accessing palliative care in the United States. Home-based palliative care interventions should incorporate the perspective of PWD and caregivers regarding experiences and unmet needs.  Objective(s): To characterize care needs and experience with palliative services at home among PWD and family caregivers.  Method(s) We recruited participants who received care at a tertiary behavioral neurology clinic for semi-structured interviews. Sampling targeted PWD in mild-to-moderate stages and family caregivers, both active and bereaved. Interviews explored palliative care needs and services for dementia care at home, based on domains of the 2018 National Consensus Project. Data were analyzed by an interdisciplinary team using the constant comparative method.  Results: Of 45 participants, 9 had dementia, 16 were active caregivers, 20 were bereaved caregivers; 57% had experience with Alzheimer’s disease, the remainder had less common syndromes like frontotemporal dementia. Every participant described multiple challenges and unmet palliative care needs while receiving or providing care at home. Challenges included changing relationship dynamics, uncertainty about the future, lack of knowledge of resources available, caregiver stress and burnout, isolation, cost and quality of paid caregivers. Unmet needs included anticipatory guidance, advance care planning, psychosocial support, symptom management, social connection, and the provision and coordination of services. PWD articulated fewer challenges and needs than caregivers. Many participants engaged hospice at some point. Positive experiences included receipt of guidance, emotional support, direct services; negative included one more care transition, insufficient time to build trust, or being discharged alive. Experience with specialty palliative care was rare and positive except when experienced as a step-down from hospice. When we presented a definition of palliative care, adapted from CAPC, nearly all said it sounded appealing and useful.  Conclusion(s) Stakeholders indicated multiple opportunities for palliative care approaches to address dementia challenges.  Impact: We will use this data to inform development of basic and specialty palliative care interventions for dementia.