Barriers and facilitators to home-based end-of-life care for people with dementia: A meta-ethnographic study

BACKGROUND: Achieving a "good death" at home for people with dementia remains an aspiration rather than a reality. Despite the preference for home-based end-of-life care among people with dementia and their families, institutional deaths continue to predominate. OBJECTIVES: This review aims to systematically synthesize qualitative evidence to identify the barriers and facilitators influencing home-based end-of-life care for people with dementia and to develop a conceptual framework integrating these complex factors. METHODS: Qualitative evidence synthesis using a meta-ethnographic approach. A systematic search was conducted in PubMed, MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and the Cochrane Library in October 2024. Study quality was assessed using the CASP tool, and confidence in the review findings was assessed using GRADE-CERQual. RESULTS: Six core themes were identified through the synthesis of data from 17 studies. System-level factors included ambiguous and obstructed entry points for end-of-life care, strained supply, financial thresholds for care services, and unstable care support. Family-level factors involved powerlessness in perceiving and seeking care and the limits of family capacity. Based on these findings, a conceptual framework was developed, which comprehensively presents the complexity of home-based end-of-life care for people with dementia. CONCLUSIONS: Home-based end-of-life care for people with dementia remains a "long and challenging journey." Future research should pay greater attention to factors that enable and strengthen service provision and to feasible ways of implementing such care. Additionally, the existing evidence mainly comes from developed countries in the Global North and is largely based on the perspectives of family caregivers and healthcare professionals. Future research needs to incorporate the perspectives of people with dementia and pay attention to the context of low- and middle-income countries. REGISTRATION: The review protocol was registered with PROSPERO (CRD42024578005).