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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

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    Rights statement: © Cambridge University Press. Clarke, C., Wilkinson, H., Keyes, S., Alexjuk, E., Wilcockson, J., Robinson, L., ... Cattan, M. (2016) Ageing and Society. The final publication is available at https://doi.org/10.1017/S0144686X16001069

    Accepted author manuscript, 872 KB, PDF document

Original languageEnglish
Pages (from-to)378-402
JournalAgeing and Society
Volume38
Issue number2
Early online date8 Nov 2016
DOIs
Publication statusPublished - Feb 2018

Abstract

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.

    Research areas

  • dementia, strategy, peer support, dementia advisers, mixed methods, quality of life

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