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Title: 'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services
Authors: Peel, Elizabeth
Harding, Rosie
Keywords: Alzheimer’s disease
Discourse analysis
Health and social care services
Issue Date: 2014
Publisher: SAGE (© the authors)
Citation: PEEL, E. and HARDING R., 2014. 'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services. Dementia, 13 (5), pp.642-661.
Abstract: Dementia is a challenging, progressive set of conditions which present a large care burden to informal, familial carers. A complex array of health and social care services are needed to support people living with dementia. Drawing on the interlinked 'Duties to Care' and 'Dementia Talking' projects, in this article we focus on British carers' talk about health and social care services. We explore data from a mixed-method questionnaire (n = 185), four focus groups and eleven interviews with informal carers of people living with dementia using thematic discourse analysis. Three themes are discussed: (1) services as a 'maze'; (2) services as overly limited - 'beyond our remit'; and (3) the battle and fighting discourse deployed by these carers. Our analysis highlights that carers find navigating systemic issues in dementia care time-consuming, unpredictable and often more difficult than the caring work they undertake.
Description: Closed access.
Sponsor: This research was funded by a British Academy small grant and a British Academy Mid-Career Fellowship (SG1000017 and MC110142, 2010-2012).
Version: Published
DOI: 10.1177/1471301213480514
URI: https://dspace.lboro.ac.uk/2134/23163
Publisher Link: http://dx.doi.org/10.1177/1471301213480514
ISSN: 1471-3012
Appears in Collections:Closed Access (Communication, Media, Social and Policy Studies)

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