Making decisions for people with dementia who lack capacity: qualitative study of family carers in UKBMJ 2010; 341 doi: https://doi.org/10.1136/bmj.c4184 (Published 18 August 2010) Cite this as: BMJ 2010;341:c4184
- Gill Livingston, professor of older people’s mental health1,
- Gerard Leavey, director of research2,
- Monica Manela, research doctor1,
- Deborah Livingston, research fellow1,
- Greta Rait, senior clinical scientist3,
- Elizabeth Sampson, senior lecturer in psychiatric and supportive care of the elderly1,
- Shilpa Bavishi, research assistant1,
- Khodayar Shahriyarmolki, research assistant1,
- Claudia Cooper, senior clinical lecturer in old age psychiatry1
- 1Department of Mental Health Sciences, University College London, London W1W 7EJ
- 2Northern Ireland Association for Mental Health (NIAMH) and University of Ulster, Belfast BT7 1HE
- 3MRC General Practice Research Framework, London NW1 2ND
- Correspondence to: G Livingston
- Accepted 10 June 2010
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.
We thank the carers who gave us their time and talked of their experiences; North Thames DeNDRoN, PCRN-GL, and clinicians in Camden and Islington NHS Foundation Trust, Barnet, Enfield and Haringey Mental Health Trust, Camden Primary Care Trust, and the Dementia Research Centre, UCLH, for helping to identify participants; the Alzheimer’s Society Islington for helping us to design the study; and Camden and Islington NHS Foundation Trust for allowing us to use Camden Mews day hospital as the venue for the focus groups.
Contributors: GLivingston, CC, GLeavey, S Nurock, ES, and GR contributed to the design of the study. GL, ES, K Judd, DL, and SB identified the participants. GLivingston, GLeavey, CC, ES, and GR facilitated the focus groups. MM, DL, SB, KS, and R Li did the individual interviews. DL, MM, SB, and KS analysed the data for themes and, with GLivingston and CC, agreed on a coding frame. All authors contributed substantially to conception and design, or analysis and interpretation of data, and to drafting the article or revising it critically for important intellectual content. GLivingston is the guarantor.
Funding: The study was funded by BUPA Foundation, which had no role in the study design; the collection, analysis, and interpretation of data; or the writing of the article and the decision to submit it for publication. All the researchers are independent of the funders.
Competing interests: All authors have completed the Unified Competing Interest form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare that GLivingston, GLeavey, GR, and CC have support from BUPA Foundation for the submitted work; (2) SB, KS, DL, and MM have no relationships with companies that might have an interest in the submitted work in the previous 3 years; (3) their spouses, partners, or children have no financial relationships that may be relevant to the submitted work; and (4) all authors have no non-financial interests that may be relevant to the submitted work.
Ethical approval: The relevant research ethics and research and development committees approved the study. Participating family carers gave signed informed consent.
Data sharing: No additional data available.
- Accepted 10 June 2010
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