New Publication on Dementia Carers’ experiences of ‘the system’

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Carers of people living with dementia find ‘the system’ of dementia support to be a maze.

A new research article by Elizabeth Peel and Rosie Harding has been published ‘online first’ in Dementia: The International Journal of Social Research and Practice. ‘“It’s a huge maze, the system, it’s a terrible maze”: Dementia carers’ constructions of navigating health and social care services’ explores data from both the ‘Duties to Care’ and ‘Dementia Talking’ dementia projects to highlight the experiences of familial carers of people living with dementia in navigating the complex health and social care systems that provide support for people living with dementia.

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.

For more information, please contact either Professor Elizabeth Peel (e.peel@worc.ac.uk) or Dr Rosie Harding (r.j.harding@bham.ac.uk). The article can be accessed on the Dementia journal website or by contacting us.

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About Rosie Harding

Prof Rosie Harding is Professor of Law and Society at the University of Birmingham. Rosie studied for an LLB at the University of Edinburgh, an LLM at Keele University and a PhD at the University of Kent. She was PI on the AHRC-funded phase of the ReValuing Care Network. Her research explores the place of law in everyday life with a particular focus on the recognition and regulation of caring and intimate relationships. Her broader research interests are in family law, healthcare law, disability law and gender, sexuality and law. She is the author of Duties to Care: Dementia, Relationality and Law (2017, Cambridge University Press) and Regulating Sexuality (2011, Routledge winner of the 2011 Hart-SLSA Book Prize and Early Career Prizes), and editor of ReValuing Care in Theory, Law and Policy: Cycles and Connections (2017, Routledge, with Ruth Fletcher & Chris Beasley), Law and Sexuality (2016, Routledge Critical Concepts in Law), and Ageing and Sexualities: Interdisciplinary Perspectives (2016, Ashgate; 2016, Routledge, with Elizabeth Peel). Rosie is a 2016/17 British Academy Mid-Career Fellow, working on ‘Everyday Decisions: Interrogating the interface between mental capacity and legal capacity’.  She founded and co-ordinated CentreLGS PECANS (http://www.clgs-pecans.org.uk/), from 2004-2011. PECANS is an international and interdisciplinary network of early career scholars working in the law, gender and sexuality field. PECANS was funded by the AHRC CentreLGS from 2004-2009, and the ESRC from 2009-2011.

Telephone :-+44 (0) 121 414 4960

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