SynthesisHealth expectations : an international journal of public participation in health care and health policy2021
A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections.
Synthesis in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 3 of them syntheses that pooled it.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
19 citing papers in PubMed, 3 syntheses or guidelines pooled it, 30 citations in OpenAlex.
- Intervention components in the self-management of Parkinson's: a mixed-methods synthesis of qualitative and quantitative evidence.BMC health services research · 2024Pooled 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
- A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections.Health expectations : an international journal of public participation in health care and health policy · 2021Pooled it
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Grandad forgot my name: interactive narratives for dementia support.Primary health care research & development · 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-Design of a Facilitated Self-Management Toolkit for People With Parkinson's Disease.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- 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
- Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review.Nutrients · 2024Article
- Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners' Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project.International journal of environmental research and public health · 2024Article
- Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Social care planning and provision for people with young onset dementia and their families: Protocol for the DYNAMIC study.PloS one · 2024Article
- Development and preliminary usability testing of an electronic conversation guide incorporating patient values and prognostic information in preparation for older people's decision-making near the end of life.Internet interventions · 2023Article
- Decision Aid Interventions for Family Caregivers of Persons With Advanced Dementia in Decision-Making About Feeding Options: A Scoping Review.Journal of the American Medical Directors Association · 2022Article
- A feasibility study of a decision aid to support family carers of people with severe dementia or those towards the end-of-life.Palliative medicine · 2022Article
- Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Health and social care services for people with dementia at home at the end of life: A qualitative study of bereaved informal caregivers' experiences.Palliative medicine · 2022Article
- Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype.Gerontology & geriatric medicineArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 5 institutions in 2 countries.
Funding
Abstract
backgroundFamily carers of people living with dementia often need support with making decisions about care. Many find end-of-life care decisions particularly difficult. The aim of this article is to present an evidence- and theoretical-based process for developing a decision aid to support family carers of people with dementia towards the end-of-life.
methodsFollowing a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision-Making model.
resultsThe decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well-being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers.
conclusionThis is the first decision aid that focusses on multiple decisions towards the end-of-life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. PATIENT OR PUBLIC CONTRIBUTION: Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.