ArticlePalliative medicine2022
A feasibility study of a decision aid to support family carers of people with severe dementia or those towards the end-of-life.
Article in Palliative medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
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Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Co-design development of a decision guide on eating and drinking for people with severe dementia during acute hospital admissions.Health expectations : an international journal of public participation in health care and health policy · 2023Pooled it
- The experience and coping of decision-making dilemma of family caregivers of elderly patients with moderate to severe dementia: a qualitative study.BMC geriatrics · 2026Article
- "I tell you what it's the hardest job": the experiences of family carers providing support for people with dementia at home in the last year of life.BMC geriatrics · 2025Article
- Co-Designing a Palliative Dementia Care Framework to Support Holistic Assessment and Decision Making: The EMBED-Care Framework.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Acceptability of Using a Decision Aid to Support Family Carers of People With Dementia Towards the End of Life: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- A palliative care goals model for people with dementia and their family: Consensus achieved in an international Delphi study.Palliative medicine · 2024Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
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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