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“I know best:” women caring for kin with dementia

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  • Apesoa-Varano, Ester Carolina

Abstract

The dementia care literature in the home is vast, particularly in the health sciences where the focus remains on intervention to address carer emotional distress and burden. The sociological literature on dementia care has primarily utilized the illness disruption and (bio)medicalization models to show how meaning and practices are negotiated in the non-expert setting. Instead, I apply a feminist labor process perspective to examine the question of why women dementia kin carers resist relinquishing care responsibilities to others. This qualitative grounded theory study is based on seven waves of interviews (total = 98) conducted over approximately five years with 15 Latina dementia kin carers recruited through clinic and community sites in Northern California. Findings show how Latina kin carers exercise a degree of control and autonomy over the care process because they have developed tacit knowledge and skills to craft quality care of kin. In facing the dilemma of ceding care to others they perceive as unprepared, they reject available help. This study reveals how carers maintain quality care with dignity and comfort for the care recipient and themselves.

Suggested Citation

  • Apesoa-Varano, Ester Carolina, 2020. "“I know best:” women caring for kin with dementia," Social Science & Medicine, Elsevier, vol. 256(C).
  • Handle: RePEc:eee:socmed:v:256:y:2020:i:c:s0277953620302458
    DOI: 10.1016/j.socscimed.2020.113026
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    References listed on IDEAS

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    1. Berry, Brandon & Apesoa-Varano, Ester Carolina & Gomez, Yarin, 2015. "How family members manage risk around functional decline: The autonomy management process in households facing dementia," Social Science & Medicine, Elsevier, vol. 130(C), pages 107-114.
    2. Berry, Brandon & Apesoa-Varano, Ester Carolina, 2017. "Medication takeovers: Covert druggings and behavioral control in Alzheimer's," Social Science & Medicine, Elsevier, vol. 188(C), pages 51-59.
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    Cited by:

    1. Smith, Robert Courtney, 2021. "Analytic autoethnography of familial and institutional social identity construction of My Dad with Alzheimer's: In the emergency room with Erving Goffman and Oliver Sacks," Social Science & Medicine, Elsevier, vol. 277(C).

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