Nutrition and hydration for people living with dementia near the end of life:A qualitative systematic review

Aims: To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life. Design: Systematic review and narrative synthesis of qualitative studies. Data sources: MEDLINE, Embase, PsycINFO, CINAHL. Review methods: Databases were searched for qualitative studies from January 2000-February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis. Results: Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long-term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with ‘the right thing to do’; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia. Conclusion: The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate. Impact: This review summarizes practitioners and families’ experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.