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Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK
Livingston G, Leavey G, Manela M, Livingston D, Rait G, Sampson E, Bavishi S, Shahriyarmolki K et al.. BMJ (Clinical research ed.), 2010-08-18
Topic: Risk, prevention and care in population studies
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.
Key findings
- 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.
Why it matters
This qualitative study identified difficult decisions family carers make for people with dementia who lack capacity, including accessing services, care homes, legal-financial matters, and non-dementia health care. It is about decision-making support and does not test any treatment, cure, or prevention for Alzheimer's disease.
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Study details
- Evidence strengthLow
How this study scored 52/100
Published in a leading specialty journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / blinded because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 9 / 10 | Tier 2 — leading specialty journal (BMJ (Clinical research ed.)) |
| Journal's citation record | 4 / 4 | BMJ: journal h-index 608 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 1 / 5 | 2010 — within 20 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 5 / 7 | Cited 237 times (OpenAlex, 2026-10-10) |
| Citations per year | 3 / 5 | 13.2 citations a year over 18 year(s) since 2010 |
| Impact for its field and year | 4 / 6 | Cited 12.3× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 3 / 6 | Cited by 11 other studies in this library |
| Still being cited | 2 / 4 | Cited 22 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 3 / 4 | Last-listed author Claudia Cooper: h-index 66 (OpenAlex, whole career) |
| Institution's track record | 2 / 3 | University College London: institution h-index 2,029 (OpenAlex) |
| Multi-centre collaboration | 1 / 3 | OpenAlex lists 3 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 20719843) |
| Free to read | 2 / 2 | Free to read |
| Total | 52 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record's author list ends in “et al.”, so not every author is named. Check the citation against the original before you use it.
APA 7th
Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ (Clinical research ed.). https://doi.org/10.1136/bmj.c4184
Vancouver
Livingston G, Leavey G, Manela M, Livingston D, Rait G, Sampson E, et al. Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ (Clinical research ed.). 2010. doi:10.1136/bmj.c4184. PMID: 20719843.
BibTeX
@article{livingston2010-20719843,
author = {Livingston, G. and Leavey, G. and Manela, M. and Livingston, D. and Rait, G. and Sampson, E. and Bavishi, S. and Shahriyarmolki, K. and others},
title = {{Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK}},
journal = {BMJ (Clinical research ed.)},
year = {2010},
doi = {10.1136/bmj.c4184},
pmid = {20719843},
url = {https://doi.org/10.1136/bmj.c4184}
}
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