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A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia

Lamahewa, K; Mathew, R; Iliffe, S; Wilcock, J; Manthorpe, J; Sampson, EL; Davies, N; (2017) A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expections 10.1111/hex.12593. (In press). Green open access

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Abstract

BACKGROUND: Dementia is a progressive neurodegenerative condition characterized by declining functional and cognitive abilities. The quality of end of life care for people with dementia in the UK can be poor. Several difficult decisions may arise at the end of life, relating to the care of the person with dementia, for example management of comorbidities. OBJECTIVE: To explore difficulties in decision making for practitioners and family carers at the end of life for people with dementia. DESIGN: Qualitative methodology using focus groups and semi-structured interviews and thematic analysis methods. SETTINGS AND PARTICIPANTS: Former (n=4) and current (n=6) family carers of people with experience of end of life care for a person with dementia were recruited from an English dementia voluntary group in 2015. A further 24 health and care professionals were purposively sampled to include a broad range of expertise and experience in dementia end of life care. RESULTS: Four key themes were identified as follows: challenges of delivering coherent care in dynamic systems; uncertainty amongst decision makers; internal and external conflict amongst decision makers; and a lack of preparedness for the end of life. Overarching difficulties such as poor communication, uncertainty and conflict about the needs of the person with dementia as well as the decision maker's own role can characterize decision making at the end of life. CONCLUSIONS: This study suggests that decision making at the end of life for people with dementia has the potential to be improved. More planning earlier in the course of dementia with an on-going approach to conversation may increase preparedness and family carers' expectations of end of life.

Type: Article
Title: A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/hex.12593
Publisher version: http://dx.doi.org/10.1111/hex.12593
Language: English
Additional information: © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Keywords: decision-making, dementia, end-of-life, family caregivers, palliative care, qualitative research
UCL classification: UCL > Provost and Vice Provost Offices
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 Pop Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Pop Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
URI: https://discovery.ucl.ac.uk/id/eprint/1559968
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