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. 2010 Aug 18:341:c4184.
doi: 10.1136/bmj.c4184.

Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK

Gill Livingston  1 , Gerard Leavey, Monica Manela, Deborah Livingston, Greta Rait, Elizabeth Sampson, Shilpa Bavishi, Khodayar Shahriyarmolki, Claudia Cooper
Affiliations

Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK

Gill Livingston et al. BMJ. .

Abstract

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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Conflict of interest statement

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.

Comment in

  • Voting and mental capacity.
    Redley M, Hughes JC, Holland A. Redley M, et al. BMJ. 2010 Aug 25;341:c4085. doi: 10.1136/bmj.c4085. BMJ. 2010. PMID: 20739361 No abstract available.
  • Carers are central.
    Whittall H. Whittall H. BMJ. 2010 Sep 22;341:c5150. doi: 10.1136/bmj.c5150. BMJ. 2010. PMID: 20861109 No abstract available.

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