ArticlePloS one2021
Developing an applied model for making decisions towards the end of life about care for someone with dementia.
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
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Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it, 30 citations in OpenAlex.
- Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.Palliative medicine · 2025Pooled 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
- The economics of decision-making in dementia care and related life-limiting illness: a narrative review.Health economics review · 2026Review
- An account of personal autonomy for people living with dementia.The Gerontologist · 2025Article
- From living well to dying well with dementia: The significance of an expanded understanding of loss for end-of-life care.Palliative care and social practice · 2025Article
- The components of best nursing care for well-dying in people with dementia: A scoping review.Journal of Korean gerontological nursing · 2024Review
- 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
- Shared decision-making in persons living with dementia: A scoping review.Dementia (London, England) · 2023Article
- Shared decision-making for children with medical complexity in community health services: a scoping review.BMJ paediatrics open · 2023Article
- A Situation-Specific Theory of End-of-Life Communication in Nursing Homes.International journal of environmental research and public health · 2023Article
- Experiences of hospice dementia care: A qualitative study of bereaved carers and hospice clinicians.PloS one · 2023Article
- 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
- Trust and inclusion during the Covid-19 pandemic: Perspectives from Black and South Asian people living with dementia and their carers in the UK.International journal of geriatric psychiatry · 2022Article
- Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.BMC health services research · 2021Article
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Corrections and comments
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Authors and funding
5 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMany people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.
aimExplore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.
methodsSemi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.
resultsParticipants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.
conclusionsThe modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.
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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 OpenQuestion graph.