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

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  • Hillman, A.
  • Jones, I.R
  • Quinn, C.
  • Pentecost, C.
  • Stapley, S.
  • Charlwood, C.
  • Clare, L.

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.

Suggested Citation

  • Hillman, A. & Jones, I.R & Quinn, C. & Pentecost, C. & Stapley, S. & Charlwood, C. & Clare, L., 2023. "The precariousness of living with, and caring for people with, dementia: Insights from the IDEAL programme," Social Science & Medicine, Elsevier, vol. 331(C).
    • Handle: RePEc:eee:socmed:v:331:y:2023:i:c:s0277953623004550
    DOI: 10.1016/j.socscimed.2023.116098
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    References listed on IDEAS

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    1. Gjødsbøl, Iben M. & Koch, Lene & Svendsen, Mette N., 2017. "Resisting decay: On disposal, valuation, and care in a dementia nursing home in Denmark," Social Science & Medicine, Elsevier, vol. 184(C), pages 116-123.
    2. Hennie Boeije, 2002. "A Purposeful Approach to the Constant Comparative Method in the Analysis of Qualitative Interviews," Quality & Quantity: International Journal of Methodology, Springer, vol. 36(4), pages 391-409, November.
    3. Linda Clare & Laura D Gamble & Anthony Martyr & Serena Sabatini & Sharon M Nelis & Catherine Quinn & Claire Pentecost & Christina Victor & Roy W Jones & Ian R Jones & Martin Knapp & Rachael Litherland, 2022. "“Living Well” Trajectories Among Family Caregivers of People With Mild-to-Moderate Dementia in the IDEAL Cohort [Relationship of subjective and objective social status with psychological and physio," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 77(10), pages 1852-1863.
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