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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

Lookup NU author(s): Dr Jane Wilcockson, Dr Louise Robinson, Philip Hodgson, Dr Lynne Corner

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Abstract

Copyright © Cambridge University Press 2016 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.

Publication metadata

Author(s): Clarke CL, Keyes SE, Wilkinson H, Alexjuk EJ, Wilcockson J, Robinson L, Reynolds J, McClelland S, Hodgson P, Corner L, Cattan M

Publication type: Article

Publication status: Published

Journal: Ageing and Society

Year: 2018

Volume: 38

Issue: 2

Pages: 378-402

Print publication date: 01/02/2018

Online publication date: 08/11/2016

Acceptance date: 22/08/2016

ISSN (print): 0144-686X

ISSN (electronic): 1469-1779

Publisher: Cambridge University Press

URL: https://doi.org/10.1017/S0144686X16001069

DOI: 10.1017/S0144686X16001069

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