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“The mind may go, but the heart knows”: Emotional care by ethnic minority carers of people living with dementia

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  • Gilbert, Andrew Simon
  • Antoniades, Josefine
  • Croy, Samantha
  • Brijnath, Bianca

Abstract

Drawing on the sociology of emotions, this article investigates the socially and culturally mediated nature of emotions and emotional care within 93 ethnic minority carers' narratives of dementia care. Adding to the cross-cultural literatures on the sociology of emotions and dementia care respectively, our analysis showed that ‘signals’ of dementia to family carers were often emotional outbursts of anger by the person with dementia. These displays, in turn, created conflict, and aroused emotions such as shame, anger, and depression among carers. To mitigate these tendencies, carers enacted emotional management, which centered on reducing the gravity of negative emotions felt by the person with dementia, and affording them the social space to maintain a positive disposition. To create this positive emotional space, carers deployed different strategies. Some mobilized medical discourses to diffuse the emotional and moral significance of their relative's behavior and enable emotional distantiation. Others conceived of people with dementia as ‘childlike’ and requiring their protection from emotional negativity. Although, such efforts work took a toll on carers' emotional energies, it was considered enabling, therapeutic, and integral to care. Such emotional work departs from academic and advocacy efforts that see such behavior as patronizing and infantilizing, and underscores the need for more nuanced discussion around emotions and dementia care in ethnic minority families.

Suggested Citation

  • Gilbert, Andrew Simon & Antoniades, Josefine & Croy, Samantha & Brijnath, Bianca, 2021. "“The mind may go, but the heart knows”: Emotional care by ethnic minority carers of people living with dementia," Social Science & Medicine, Elsevier, vol. 285(C).
  • Handle: RePEc:eee:socmed:v:285:y:2021:i:c:s0277953621006262
    DOI: 10.1016/j.socscimed.2021.114294
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    References listed on IDEAS

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    1. David Boyns & Sarah Luery, 2015. "Negative Emotional Energy: A Theory of the “Dark-Side” of Interaction Ritual Chains," Social Sciences, MDPI, vol. 4(1), pages 1-23, February.
    2. Davis, Daniel H. J., 2004. "Dementia: sociological and philosophical constructions," Social Science & Medicine, Elsevier, vol. 58(2), pages 369-378, January.
    3. Gabriele Cipriani & Gemma Borin, 2015. "Understanding dementia in the sociocultural context: A review," International Journal of Social Psychiatry, , vol. 61(2), pages 198-204, March.
    4. Seaman, Aaron T., 2018. "The consequence of “doing nothing”: Family caregiving for Alzheimer's disease as non-action in the US," Social Science & Medicine, Elsevier, vol. 197(C), pages 63-70.
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