Meaningfulness and quality of end of life for people with dementia: a systematic review and 'best-fit' framework synthesis.

INTRODUCTION: Dementia poses a unique challenge to traditional models of a 'good death'. Understanding what makes the dying process 'meaningful' offers a more nuanced approach to improving experiences at the end of life. AIM: To develop a conceptual framework for meaningful dying in dementia. METHODS: A qualitative systematic review drawing on five databases, and 'best-fit' framework synthesis. Reported in line with PRISMA guidelines and GRADE-CERQual assessment of confidence. Qualitative and mixed-methods studies were identified that explored concepts related to quality of end of life in dementia. Framework selection was derived from theories of meaningfulness, a good death and personhood in dementia. The conceptual framework was refined working with people affected by dementia. RESULTS: Sixty studies, from 16 countries, were included. Five central themes were generated: '1. Changing identity', '2. Bodily comfort', '3. Connection & relationships', '4. Recognition of spiritual self' and '5. Contribution & legacy'. Underpinning and surrounding these were two themes: '6. Respecting the person & maintaining dignity', and '7. Finding coherences & making sense'. This final theme facilitates overarching sense-making, allowing for the conflicts and tensions between the other themes to be reconciled. DISCUSSION: 'Meaningful dying' emphasises making sense of the dying experience as a whole. By contextualising what is happening within the story of the individual, it facilitates personal dignity in the face of potentially unavoidable suffering. The framework provides conceptual guidance for making decisions on behalf of someone with dementia towards the end of life when mental capacity may be lost.