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

Clarke, Charlotte, Wilkinson, Heather, Keyes, Sarah, Alexjuk, Eva, Wilcockson, Jane, Robinson, Louise, Reynolds, Joanna, McClelland, Siobhan, Hodgson, Philip, Corner, Lynn and Cattan, Mima (2018) "I just want to get on with my life": a mixed-methods study of active management of quality of life in living with dementia. Ageing & Society, 38 (2). pp. 378-402. ISSN 0144-686X

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Official URL: http://dx.doi.org/10.1017/S0144686X16001069


The active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification (Alzheimer’s Association 2015). However, research to date has been largely of modest scale and explanatory factors for improvements 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 (Department of Health 2009) 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, 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.

Item Type: Article
Uncontrolled Keywords: dementia, strategy, peer support, dementia advisers, mixed methods, quality of life
Subjects: B700 Nursing
L400 Social Policy
Department: Faculties > Health and Life Sciences > Nursing, Midwifery and Health
Depositing User: Paul Burns
Date Deposited: 17 Oct 2016 11:42
Last Modified: 11 Oct 2019 21:30
URI: http://nrl.northumbria.ac.uk/id/eprint/28029

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