• Nathan Davies, Narin Aker, Victoria Vickerstaff, Elizabeth L Sampson, and Greta Rait.
• Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK.
• Palliat Med. 2022 Oct 1; 36 (9): 143214391432-1439.

BackgroundAdvance care planning in dementia does not always happen. As dementia progresses, decisions are often left for family carers to make with professionals.AimTo test the feasibility and acceptability of the delivery and use of a decision aid for family carers of people with severe dementia or towards the end-of-life.DesignFeasibility study using a before-after design of a paper-based decision aid with family carers of people with severe dementia or towards the end-of-life. Criteria for whether to progress to full evaluation included achieving: 70% recruitment rate of target of 30 people, and retention of 70% at 6 months. Outcome measures at baseline, 3 and 6 months, included: the Decisional Conflict Scale (DCS), Kessler Psychological Distress Scale (K10), EQ5D-5L and Satisfaction with Care at the End of Life (SWC-EOLD).ParticipantsTwenty-eight family carers were recruited (93% of target), 26 completed baseline assessment and 20 (71%) of those were followed-up at 6 months.ResultsAlmost all outcomes changed indicating improvement over 6 months. The DCS and K10 scores decreased indicating less decisional conflict and less psychological distress. The decision aid was acceptable, 25% found it very helpful and 55% a little helpful at 6 months.ConclusionWe met the success criteria demonstrating this study was feasible and acceptable to carers. Future research should test the effectiveness of the decision aid in a full scale evaluation.

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