Informal Caregivers' Experiences of Decision-Making in End-of-Life Care for People with Dementia: A Qualitative Meta-synthesis

Purpose: This review synthesized qualitative evidence on informal caregivers' experiences in decision-making about end-of-life care for people with dementia.Methods: A meta-aggregation approach based on the Joanna Briggs Institute methodology was applied. Literature searches were conducted across 11 databases including PubMed, as well as ProQuest Dissertations & Theses Global, OpenGrey, and citation searches for grey literature. The search and study selection were carried out between February 13 and June 28, 2025.Results: Twenty-one qualitative studies involving 502 informal caregivers were included. Three synthesized findings emerged from nine categories: (1) formation and readiness in end-of-life care decision-making, including role assignment, prior discussions, and preparedness; (2) factors and emotional impacts, encompassing barriers, facilitators, decision-making bases, and emotional consequences; and (3) caregivers' needs in end-of-life care decision-making, reflecting their desire to make appropriate decisions for people with dementia and the requirements to do so.Conclusion: This review offers a comprehensive understanding of caregivers' experiences and provides practical insights for healthcare professionals. The findings support the development of guidance to assist caregivers, reduce decision-making burden and emotional distress, and promote more meaningful and satisfactory end-of-life care decisions.