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'It's a huge maze, the system, it's a terrible maze': dementia carers' constructions of navigating health and social care services
journal contributionposted on 2016-11-16, 10:07 authored by Elizabeth PeelElizabeth Peel, Rosie Harding
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.
This research was funded by a British Academy small grant and a British Academy Mid-Career Fellowship (SG1000017 and MC110142, 2010-2012).
- Social Sciences
- Communication, Media, Social and Policy Studies
Pages642 - 661
CitationPEEL, 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.
PublisherSAGE (© the authors)
- VoR (Version of Record)
Publisher statementThis work is made available according to the conditions of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) licence. Full details of this licence are available at: https://creativecommons.org/licenses/by-nc-nd/4.0/