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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; ... Cooper, C; + view all (2010) Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. British Medical Journal , 341 , Article c4184. 10.1136/bmj.c4184. Green open access

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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.

Type: Article
Title: Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK
Open access status: An open access version is available from UCL Discovery
DOI: 10.1136/bmj.c4184
Publisher version: http://dx.doi.org/10.1136/bmj.c4184
Language: English
Additional information: This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.
Keywords: Alzheimers disease, caregivers, relatives, member
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/150751
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