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‘I just want to get on with my life’: a mixed-methods study of active management of quality of life in living with dementia

Published online by Cambridge University Press:  08 November 2016

CHARLOTTE L. CLARKE ,
SARAH E. KEYES ,
HEATHER WILKINSON ,
E. JOANNA ALEXJUK ,
JANE WILCOCKSON ,
LOUISE ROBINSON ,
JOANNA REYNOLDS ,
SIOBHAN MCCLELLAND ,
PHILLIP HODGSON  and
LYNN CORNER
...Show all authors
CHARLOTTE L. CLARKE*
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
SARAH E. KEYES
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
HEATHER WILKINSON
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
E. JOANNA ALEXJUK
Affiliation:
School of Health in Social Science, University of Edinburgh, UK.
JANE WILCOCKSON
Affiliation:
School of Health in Social Science, University of Edinburgh, UK. Department of Healthcare, Northumbria University, Newcastle, UK.
LOUISE ROBINSON
Affiliation:
Institute of Ageing & Health, Newcastle University, Newcastle upon Tyne, UK.
JOANNA REYNOLDS
Affiliation:
Department of Public Health and Wellbeing, Northumbria University, Newcastle, UK.
SIOBHAN MCCLELLAND
Affiliation:
Health Economics & Policy Research Unit, Glamorgan University and Macmillan Cancer Support, London, UK.
PHILLIP HODGSON
Affiliation:
Department of Healthcare, Northumbria University, Newcastle, UK.
LYNN CORNER
Affiliation:
Institute of Ageing & Health, Newcastle University, Newcastle upon Tyne, UK.
MIMA CATTAN
Affiliation:
Department of Public Health and Wellbeing, Northumbria University, Newcastle, UK.
*
Address for correspondence: Charlotte Clarke, School of Health in Social Science, University of Edinburgh, Teviot Place, Edinburgh EH8 9AG, UK E-mail: charlotte.clarke@ed.ac.uk
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Abstract

The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.

Keywords

dementiastrategypeer supportdementia advisersmixed methodsquality of life
Type
Articles
Information
Ageing & Society , Volume 38 , Issue 2 , February 2018 , pp. 378 - 402
Copyright
Copyright © Cambridge University Press 2016 

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