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. 2024 Jun;27(3):e14123.
doi: 10.1111/hex.14123.

Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study

Nathan Davies  1 , Narin Aker  1 , Emily West  2 , Greta Rait  3 , Elizabeth L Sampson  2   4
Affiliations

Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study

Nathan Davies et al. Health Expect. 2024 Jun.

Abstract

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life.

Methods: We conducted semi-structured interviews with a sample of family carers enroled into a 6-month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self-reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021-July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results.

Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity.

Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning.

Patient or public contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis.

Keywords: decision making; decision‐aid; dementia; palliative care; qualitative.

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Conflict of interest statement

The authors declare no conflicts of interest.

References

    1. Davies N., De Souza T., Rait G., Meehan J., and Sampson E. L., “Developing an Applied Model for Making Decisions Towards the End of Life About Care for Someone With Dementia,” PLoS One 16, no. 5 (2021): e0252464. - PMC - PubMed
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    1. Davies N., Manthorpe J., Sampson E. L., et al., “Guiding Practitioners Through End of Life Care for People With Dementia: The Use of Heuristics,” PLoS One 13, no. 11 (2018): e0206422. - PMC - PubMed
    1. St‐Amant O., Ward‐Griffin C., DeForge R. T., et al., “Making Care Decisions in Home‐Based Dementia Care: Why Context Matters,” Canadian Journal on Aging/La revue canadienne du vieillissement 31, no. 4 (2012): 423–434. - PubMed
    1. Department of Health. Mental Capacity Act (London: Stationary Office, 2005).

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