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.
Funding
This research was funded by a British Academy small grant and a British Academy Mid-Career
Fellowship (SG1000017 and MC110142, 2010-2012).
History
School
Social Sciences
Department
Communication, Media, Social and Policy Studies
Published in
Dementia
Volume
13
Issue
5
Pages
642 - 661
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.
This 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/