IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v331y2023ics0277953623004550.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953623004550
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2023.116098?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. 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.
    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. 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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Maider Belintxon & Nisha Dogra & Paula McGee & Maria Jesus Pumar‐Mendez & Olga Lopez‐Dicastillo, 2020. "Encounters between children's nurses and culturally diverse parents in primary health care," Nursing & Health Sciences, John Wiley & Sons, vol. 22(2), pages 273-282, June.
    2. Julia Veidt & Steven Lam & Hung Nguyen-Viet & Tran Thi Tuyet-Hanh & Huong Nguyen-Mai & Sherilee L. Harper, 2018. "Is Agricultural Intensification a Growing Health Concern? Perceptions from Waste Management Stakeholders in Vietnam," Sustainability, MDPI, vol. 10(12), pages 1-13, November.
    3. Iversen, Sara V. & Naomi, van der Velden & Convery, Ian & Mansfield, Lois & Holt, Claire D.S., 2022. "Why understanding stakeholder perspectives and emotions is important in upland woodland creation – A case study from Cumbria, UK," Land Use Policy, Elsevier, vol. 114(C).
    4. Komppula, Raija, 2014. "The role of individual entrepreneurs in the development of competitiveness for a rural tourism destination – A case study," Tourism Management, Elsevier, vol. 40(C), pages 361-371.
    5. Anna Romiti & Mario Vecchio & Chiara Milani & Gino Sartor, 2023. "Italian healthcare organizations facing new dimensions: changes in governance structure," Journal of Management & Governance, Springer;Accademia Italiana di Economia Aziendale (AIDEA), vol. 27(3), pages 893-921, September.
    6. Saint Ville, Arlette S. & Hickey, Gordon M. & Phillip, Leroy E., 2017. "How do stakeholder interactions influence national food security policy in the Caribbean? The case of Saint Lucia," Food Policy, Elsevier, vol. 68(C), pages 53-64.
    7. Martha A Abshire & Marie T Nolan & Sydney M Dy & Joseph J Gallo, 2020. "What matters when doctors die: A qualitative study of family perspectives," PLOS ONE, Public Library of Science, vol. 15(6), pages 1-12, June.
    8. Kranke, Derrick & Floersch, Jerry & Townsend, Lisa & Munson, Michelle, 2010. "Stigma experience among adolescents taking psychiatric medication," Children and Youth Services Review, Elsevier, vol. 32(4), pages 496-505, April.
    9. Zhongzhong Fu & Han Yan & Zhongnan Fu, 2024. "Negotiation within legitimate political boundaries: revealing the bottom-up news filtering of Chinese Party newspapers," Palgrave Communications, Palgrave Macmillan, vol. 11(1), pages 1-8, December.
    10. Ejiogu, Amanze & Ambituuni, Ambisisi & Ejiogu, Chibuzo, 2021. "Accounting for accounting’s role in the neoliberalization processes of social housing in England: A Bourdieusian perspective," CRITICAL PERSPECTIVES ON ACCOUNTING, Elsevier, vol. 80(C).
    11. Antony S. Cheng & Lisa Dale, 2020. "Achieving Adaptive Governance of Forest Wildfire Risk Using Competitive Grants: Insights From the Colorado Wildfire Risk Reduction Grant Program," Review of Policy Research, Policy Studies Organization, vol. 37(5), pages 657-686, September.
    12. Tineke Schoot & Ireen Proot & Marja Legius & Ruud ter Meulen & Luc de Witte, 2006. "Client-Centered Home Care," Clinical Nursing Research, , vol. 15(4), pages 231-254, November.
    13. María Gloria Villarejo-Rodríguez & Beatriz Rodríguez-Martín, 2019. "A Qualitative Study of Parents’ Conceptualizations on Fever in Children Aged 0 to 12 Years," IJERPH, MDPI, vol. 16(16), pages 1-11, August.
    14. Singh, Pratibha & Sharma, Mahak & Daim, Tugrul, 2024. "Envisaging AR travel revolution for visiting heritage sites: A mixed-method approach," Technology in Society, Elsevier, vol. 76(C).
    15. Martínez Álvarez, Melisa & Borghi, Josephine & Acharya, Arnab & Vassall, Anna, 2016. "Is Development Assistance for Health fungible? Findings from a mixed methods case study in Tanzania," Social Science & Medicine, Elsevier, vol. 159(C), pages 161-169.
    16. Claire L O’Reilly & Diane Paul & Rebecca McCahon & Sumitra Shankar & Alan Rosen & Thomas Ramzy, 2019. "Stigma and discrimination in individuals with severe and persistent mental illness in an assertive community treatment team: Perceptions of families and healthcare professionals," International Journal of Social Psychiatry, , vol. 65(7-8), pages 570-579, November.
    17. Damian, April Joy & Gallo, Joseph J. & Mendelson, Tamar, 2018. "Barriers and facilitators for access to mental health services by traumatized youth," Children and Youth Services Review, Elsevier, vol. 85(C), pages 273-278.
    18. Keith A. Houghton & Christine Jubb & Michael Kend, 2011. "Materiality in the context of audit: the real expectations gap," Managerial Auditing Journal, Emerald Group Publishing, vol. 26(6), pages 482-500, June.
    19. Gretchen Keller & Alefia Merchant & Carol Common & Andrea M Laizner, 2017. "Patient experiences of in‐hospital preparations for follow‐up care at home," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(11-12), pages 1485-1494, June.
    20. Cartwright, Severina & Davies, Iain & Archer-Brown, Chris, 2021. "Managing relationships on social media in business-to-business organisations," Journal of Business Research, Elsevier, vol. 125(C), pages 120-134.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:331:y:2023:i:c:s0277953623004550. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.