Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK
Open accessAbstract
OBJECTIVE: To identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers. DESIGN: Qualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews. SETTING: Community settings in London. PARTICIPANTS: 43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews. RESULTS: Family carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity. CONCLUSIONS: The following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.
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Decisions about moving to a care home are often difficult and stressful for people with dementia and their families.
“People with dementia and their relatives find decisions about the person with dementia living in a care home difficult.”
From How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study (2016) · cites this paper as [3]
The Results section, under “Decisions about care homes,” says that deciding a relative should enter a care home provoked considerable difficulties, including guilt and distress for carers. The study reports family carers’ experiences and describes resistance by people with dementia, but does not establish that people with dementia themselves found the decision difficult or stressful. (LLM, conf=0.84)
Experimental — accuracy not yet measuredIn general, when they are well, most people do not plan that they or their relatives will move into a care home.
“In general, when they are well most people do not plan that they or their relatives will move into a care home [3].”
From How people with dementia and their families decide about moving to a care home and support their needs: development of a decision aid, a qualitative study (2016) · cites this paper as [3]
The Results section (‘Decisions about care homes’; page unavailable) says most families chose to keep the person with dementia at home as long as possible, and carers often knew the person would not have wanted to live in a care home. This supports reluctance to move into care homes, but the study does not establish that most people generally, while well, do not plan such a move for themselves or relatives. (LLM, conf=0.84)
Experimental — accuracy not yet measured
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- Authors
- Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., Bavishi, S., Shahriyarmolki, K., & Cooper, C.
- Affiliations
- University College London (GB)
- University of Ulster (GB)
- Medical Research Council (GB)
- Corresponding author
- Livingston, G.
- Venue
- BMJ
- Publisher
- BMJ
- Published
- 2010-08-18
- Volume
- 341
- Issue
- aug18 1
- Pages
- c4184-c4184
- ISSN
- 0007-1447 (ISSN-L)
- 0959-8138
- 1468-5833
- PMC
- PMC2923693
- OpenAlex
- W1996631590
- Cited by
- 239
- References
- 16
- Citations by year
- 2026: 9 · 2025: 8 · 2024: 6 · 2023: 8 · 2022: 11 · 2021: 12 · 2020: 19 · 2019: 23 · 2018: 21 · 2017: 21 · 2016: 18 · 2015: 18 · 2014: 23 · 2013: 18 · 2012: 14
- FWCI
- 13.36
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Licence
- cc-by-nc
- Locations
- BMJ (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (submittedVersion, cc-by-nc)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- Alzheimer's Society
- Bupa Foundation
- University College London Hospitals NHS Foundation Trust
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
- Keywords
- dementia, family caregivers, proxy decision-making, barriers to decision-making, end-of-life decisions, care homes, patient dignity
- MeSH terms
- Automobile Driving, Decision Making, Dementia, Family Relations, Female, Health Education, Humans, Male, Middle Aged, Nursing Homes, Patient Care Planning, Terminal Care, Resuscitation Orders, Mental Competency, Caregivers, Patient Selection
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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