The End of Life With Dementia in Asian Countries: Barriers, Facilitators and a Research Agenda for Advancing a Palliative Approach

BACKGROUND: Dementia-the seventh leading cause of death globally-is most prevalent in Asia, home to over half of those affected. Yet, palliative approaches to dementia, endorsed by the World Health Organization (WHO) Global Action Plan on the Public Health Response to Dementia, and focused on improving quality of life through a holistic and person-centered approach, are largely absent in the region. METHODS: We reviewed the available literature related to end-of-life experiences with advanced dementia from countries in the WHO South-east Asian and Western Pacific regions. We used the Consolidated Framework for Implementation Research to synthesize barriers and facilitators to implementing a palliative approach to dementia and propose a research agenda. RESULTS: Broad barriers identified in the outer setting of the implementation framework include sociocultural values and a lack of supportive policies, guidelines, and financing. Within the inner setting of the healthcare system, challenges stem from underdeveloped long-term care infrastructure, limited professional training, and gaps in equity and person-centeredness. At the individual level, barriers include low dementia literacy and limited uptake of advance care planning. Potential facilitators were growing digital fluency and established community norms around caring for older adults at home. CONCLUSIONS: Based on our review, we propose a research agenda prioritizing partnering with individuals with dementia and their caregivers, especially in low- and middle-income countries, de-implementing low-value interventions and implementing community-level palliative care models, leveraging technological innovations, and developing core evaluation metrics to advance WHO's action plan and foster culturally relevant and effective interventions tailored to the region's unique needs.