ArticleHealth expectations : an international journal of public participation in health care and health policy2018
A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia.
Article in Health expectations : an international journal of public participation in health care and health policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 4 of them syntheses that pooled it.
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The trial behind it
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Who cites it
25 citing papers in PubMed, 4 syntheses or guidelines pooled it, 61 citations in OpenAlex.
- Palliative Care in Early Dementia.Journal of pain and symptom management · 2024Pooled it
- Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.Health expectations : an international journal of public participation in health care and health policy · 2021Pooled it
- Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dementia: a systematic review.BMC geriatrics · 2020Pooled it
- Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies.Palliative medicine · 2019Pooled it
- Surrogate Decision-Making Practices Regarding End-of-Life Care for People With Dementia in Long-Term Care Hospitals: A Qualitative Descriptive Study.Journal of advanced nursing · 2026Article
- Needs of key stakeholders to make advance care plans and advance directives for people with dementia: a scoping review.BMC geriatrics · 2025Article
- The components of best nursing care for well-dying in people with dementia: A scoping review.Journal of Korean gerontological nursing · 2024Review
- Compound impact of cognitive and physical decline: A qualitative interview study of people with Parkinson's and cognitive impairment, caregivers and professionals.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia.Dementia (London, England) · 2022Article
- Discordance and concordance on perception of quality care at end of life between older patients, caregivers and clinicians: a scoping review.European geriatric medicine · 2022Article
- Observational
- A UK qualitative study of living and dying with dementia in the last year of life.Palliative care and social practice · 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
- How do people living with dementia perceive eating and drinking difficulties? A qualitative study.Age and ageing · 2021Article
- Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders.BMC medical ethics · 2021Article
- End-of-life care for people with advanced dementia and pain: a qualitative study in Swedish nursing homes.BMC nursing · 2021Article
- Rapid review of decision-making for place of care and death in older people: lessons for COVID-19.Age and ageing · 2021Review
- Developing an applied model for making decisions towards the end of life about care for someone with dementia.PloS one · 2021Article
- Determining medical decision-making capacity in brain tumor patients: why and how?Neuro-oncology practice · 2020Review
- Supporting families in end-of-life care and bereavement in the COVID-19 era.International psychogeriatrics · 2020Article
Corrections and comments
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Authors and funding
7 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundDementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities.
objectiveTo explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia.
designQualitative methodology using focus groups and semi-structured interviews and thematic analysis methods. SETTINGS AND
participantsFormer (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care.
resultsFour key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life.
conclusionsThis study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.
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Registered trials
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