IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v329y2023ics0277953623003878.html
   My bibliography  Save this article

The role of performativity in informal dementia carers' capability to be mobile

Author

Listed:
  • Lowe, Thomas A.
  • Meijering, Louise
  • de Haas, Billie

Abstract

Informal carers are and will remain a vital part of dementia care. Given the nature of their caring tasks, which focus on enabling the care recipient to engage in meaningful activities, informal dementia carers are affected in their everyday mobility. Expectations manifested by society, loved ones and the carers themselves play a critical role in how carers perform their caring role and how they perceive their opportunity, or capability, to be mobile. This article uses Butler's concept of performativity to understand informal dementia carers' capability to be mobile. In the spring and summer of 2021, we combined remote graphic elicitation with telephone interviews to gather the views of 17 informal dementia carers (aged 50+) living in England. Three key themes emerged from our analysis of the data. Firstly, participants perceived that becoming a carer changed their capability to be mobile. Secondly, the caring role in relation to the capability to be mobile resulted in an emotional toll and perceived loss of autonomy. Thirdly, the performativity of the caring role created feelings of guilt, selfishness and resentment due to the impact caring had on participants' capability to be mobile. Our study enriches the literature on informal dementia carers' mobility, as we suggest that performativity is a key factor in how this population experiences their everyday mobility. The findings suggest that existing ageing-in-place policies should take a more holistic approach by better including those ageing adults who provide the most support: informal dementia carers.

Suggested Citation

  • Lowe, Thomas A. & Meijering, Louise & de Haas, Billie, 2023. "The role of performativity in informal dementia carers' capability to be mobile," Social Science & Medicine, Elsevier, vol. 329(C).
    • Handle: RePEc:eee:socmed:v:329:y:2023:i:c:s0277953623003878
    DOI: 10.1016/j.socscimed.2023.116030
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953623003878
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2023.116030?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. Al-Janabi, Hareth & Coast, Joanna & Flynn, Terry N., 2008. "What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up," Social Science & Medicine, Elsevier, vol. 67(1), pages 111-121, July.
    2. Wiles, Janine, 2003. "Daily geographies of caregivers: mobility, routine, scale," Social Science & Medicine, Elsevier, vol. 57(7), pages 1307-1325, October.
    3. Moore, Helen & Gillespie, Alex, 2014. "The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity," Social Science & Medicine, Elsevier, vol. 116(C), pages 102-109.
    4. Hanaoka, Chie & Norton, Edward C., 2008. "Informal and formal care for elderly persons: How adult children's characteristics affect the use of formal care in Japan," Social Science & Medicine, Elsevier, vol. 67(6), pages 1002-1008, September.
    5. Susanne Nordbakke & Tim Schwanen, 2014. "Well-being and Mobility: A Theoretical Framework and Literature Review Focusing on Older People," Mobilities, Taylor & Francis Journals, vol. 9(1), pages 104-129, February.
    6. Ingrid Robeyns, 2005. "The Capability Approach: a theoretical survey," Journal of Human Development and Capabilities, Taylor & Francis Journals, vol. 6(1), pages 93-117.
    7. Chen, Lu & Fan, Hongli & Chu, Lanlan, 2019. "The hidden cost of informal care: An empirical study on female caregivers' subjective well-being," Social Science & Medicine, Elsevier, vol. 224(C), pages 85-93.
    8. Sixsmith, J. & Sixsmith, A. & Fänge, A. Malmgren & Naumann, D. & Kucsera, C. & Tomsone, S. & Haak, M. & Dahlin-Ivanoff, S. & Woolrych, R., 2014. "Healthy ageing and home: The perspectives of very old people in five European countries," Social Science & Medicine, Elsevier, vol. 106(C), pages 1-9.
    9. Uccheddu, Damiano & Gauthier, Anne H. & Steverink, Nardi & Emery, Tom, 2019. "The pains and reliefs of the transitions into and out of spousal caregiving. A cross-national comparison of the health consequences of caregiving by gender," Social Science & Medicine, Elsevier, vol. 240(C).
    10. Dahlberg, Marie & Bylund, Ami & Gustavsson, Petter & Calero, Teresa Herlestam & Wannheden, Carolina, 2022. "What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations," Social Science & Medicine, Elsevier, vol. 292(C).
    11. Bom, Judith & Stöckel, Jannis, 2021. "Is the grass greener on the other side? The health impact of providing informal care in the UK and the Netherlands," Social Science & Medicine, Elsevier, vol. 269(C).
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Osborne, Tess & Lowe, Thomas A. & Meijering, Louise, 2023. "Care and rhythmanalysis: Using metastability to understand the routines of dementia care," Social Science & Medicine, Elsevier, vol. 331(C).

    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. Marie Blaise & Laetitia Dillenseger, 2023. "Informal Caregivers and Life Satisfaction: Empirical Evidence from the Netherlands," Journal of Happiness Studies, Springer, vol. 24(6), pages 1883-1930, August.
    2. Eibich, Peter, 2023. "Instrumental variable estimates of the burden of parental caregiving," The Journal of the Economics of Ageing, Elsevier, vol. 26(C).
    3. Sean Urwin & Yiu‐Shing Lau & Gunn Grande & Matt Sutton, 2023. "Informal caregiving, time use and experienced wellbeing," Health Economics, John Wiley & Sons, Ltd., vol. 32(2), pages 356-374, February.
    4. Deka, Devajyoti, 2022. "Trip deprivation among older adults in the context of the capability approach," Journal of Transport Geography, Elsevier, vol. 100(C).
    5. Mariana Calderón-Jaramillo & Pilar Zueras, 2023. "Cared and uncared populations: understanding unmet care needs of older adults (65+) across different social care systems in Europe," European Journal of Ageing, Springer, vol. 20(1), pages 1-14, December.
    6. Han, Sae Hwang & Kim, Kyungmin & Burr, Jeffrey A., 2021. "Take a sad song and make it better: Spousal activity limitations, caregiving, and depressive symptoms among couples," Social Science & Medicine, Elsevier, vol. 281(C).
    7. Marie Blaise & Sandrine Juin & Hélène Le Forner & Quitterie Roquebert, 2024. "I care, you clean? Gendered effects of informal care on couple housework and leisure time," LISER Working Paper Series 2024-05, Luxembourg Institute of Socio-Economic Research (LISER).
    8. Edward Randal & Caroline Shaw & Alistair Woodward & Philippa Howden-Chapman & Alex Macmillan & Jamie Hosking & Ralph Chapman & Andrew M. Waa & Michael Keall, 2020. "Fairness in Transport Policy: A New Approach to Applying Distributive Justice Theories," Sustainability, MDPI, vol. 12(23), pages 1-20, December.
    9. Miller, Lyndsey M. & Utz, Rebecca L. & Supiano, Katherine & Lund, Dale & Caserta, Michael S., 2020. "Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms," Social Science & Medicine, Elsevier, vol. 266(C).
    10. Deakin, S. & Koukiadaki, A., 2011. "Capability Theory, Employee Voice and Corporate Restructuring: Evidence from UK Case Studies," Working Papers wp429, Centre for Business Research, University of Cambridge.
    11. Fancello, Giovanna & Tsoukiàs, Alexis, 2021. "Learning urban capabilities from behaviours. A focus on visitors values for urban planning," Socio-Economic Planning Sciences, Elsevier, vol. 76(C).
    12. Jeni Klugman & Francisco Rodríguez & Hyung-Jin Choi, 2011. "The HDI 2010: new controversies, old critiques," The Journal of Economic Inequality, Springer;Society for the Study of Economic Inequality, vol. 9(2), pages 249-288, June.
    13. Norma B. Coe & Jing Guo & R. Tamara Konetzka & Courtney Harold Van Houtven, 2019. "What is the marginal benefit of payment‐induced family care? Impact on Medicaid spending and health of care recipients," Health Economics, John Wiley & Sons, Ltd., vol. 28(5), pages 678-692, May.
    14. Zuoxian Gan & Tao Feng & Min Yang, 2018. "Exploring the Effects of Car Ownership and Commuting on Subjective Well-Being: A Nationwide Questionnaire Study," Sustainability, MDPI, vol. 11(1), pages 1-20, December.
    15. Richard Llewellyn & Jonathan Cowie & Mike Maher, 2020. "Active Road Studs as an Alternative to Lighting on Rural Roads: Driver Safety Perception," Sustainability, MDPI, vol. 12(22), pages 1-16, November.
    16. Lowe, Kate & Mosby, Kim, 2016. "The conceptual mismatch: A qualitative analysis of transportation costs and stressors for low-income adults," Transport Policy, Elsevier, vol. 49(C), pages 1-8.
    17. Gasper, D.R., 2007. "Problem- and policy-analysis for human development," ISS Working Papers - General Series 18743, International Institute of Social Studies of Erasmus University Rotterdam (ISS), The Hague.
    18. Lichner, Ivan & Lyócsa, Štefan & Výrostová, Eva, 2022. "Nominal and discretionary household income convergence: The effect of a crisis in a small open economy," Structural Change and Economic Dynamics, Elsevier, vol. 61(C), pages 18-31.
    19. Noriko Morioka & Jun Tomio & Toshikazu Seto & Yoshie Yumoto & Yasuko Ogata & Yasuki Kobayashi, 2018. "Association between local-level resources for home care and home deaths: A nationwide spatial analysis in Japan," PLOS ONE, Public Library of Science, vol. 13(8), pages 1-13, August.
    20. Roberta Sferrazzo & Renato Ruffini, 2021. "Are Liberated Companies a Concrete Application of Sen’s Capability Approach?," Journal of Business Ethics, Springer, vol. 170(2), pages 329-342, May.

    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:329:y:2023:i:c:s0277953623003878. 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.