The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme

Hillman, Alexandra, Jones, Ian Rees ORCID: https://orcid.org/0000-0002-1682-9134, Quin, Catherine, Pentecost, Claire, Stapely, Sally, Charlwood, Catherine and Clare, Linda 2023. The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme. Social Science & Medicine 331 , 116098. 10.1016/j.socscimed.2023.116098

Preview

PDF - Published Version Available under License Creative Commons Attribution. Download (473kB) | Preview

Abstract

This paper uses precarity as a framework to understand the vulnerabilities experienced by those living with or caring for someone living with dementia. Drawing on qualitative interview data from the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) programme, we attend to our participants' reflections on how they manage the condition and the wider circumstances in which this occurs. To interrogate the utility of precarity, we focus on our participants’ descriptions of needs and challenges and set these alongside both the wider contexts in which they seek or offer care (formal and informal) and the sets of values attributed to different ways of living with dementia. Building on the work of Portacolone, our analysis identified four interconnected themes: uncertainty; experiences of support and services; independence and personhood; and cumulative pressures and concerns. We develop this analysis by reviewing how our themes reflect, extend, or depart from previously identified markers of precarity and consider the specific ways in which these markers shape the lives of those living with dementia.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Social Sciences (Includes Criminology and Education)
Publisher:	Elsevier
ISSN:	1873-5347
Date of First Compliant Deposit:	18 July 2023
Date of Acceptance:	13 July 2023
Last Modified:	03 Aug 2023 07:38
URI:	https://orca.cardiff.ac.uk/id/eprint/161093

Actions (repository staff only)

Edit Item