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

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  • 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.

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  • 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
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    References listed on IDEAS

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    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. 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.
    3. 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.
    4. Ingrid Robeyns, 2005. "The Capability Approach: a theoretical survey," Journal of Human Development and Capabilities, Taylor & Francis Journals, vol. 6(1), pages 93-117.
    5. 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.
    6. 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).
    7. Wiles, Janine, 2003. "Daily geographies of caregivers: mobility, routine, scale," Social Science & Medicine, Elsevier, vol. 57(7), pages 1307-1325, October.
    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. 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.
    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).
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    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).

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