"I know best:" women caring for kin with dementia

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.

Keywords: Alzheimer''s disease and dementia; Kin carers/caregivers; Knowledge and skills; Latinas; Qualitative/Gounded Theory; Relinquishing care; United States; Wave in-depth interviews.