posted on 2020-08-01, 00:00authored byHailee Marie Yoshizaki-Gibbons
In the United States, there are nearly one million old disabled women living in nursing homes, approximately seventy percent of whom are diagnosed with Alzheimer’s disease and other forms of dementia. The vast majority of their direct care workers are also women, and many are further marginalized by race, class, and immigrant status. Despite this, little is known about the lived experiences of old women with dementia and care workers in nursing homes. This project centers the care relationships between institutionalized old women with dementia and the immigrant women of color employed to care for them. Drawing on nine months of ethnographic research in the dementia unit of a nursing home, I focus on temporality as a framework to understand the complex ways care is conceptualized, structured, and enacted within the confines of the unit. I analyze how time simultaneously operates to reproduce gendered, racialized, classed, aged, and disability oppressions and serves as a site of solidarity, community-building, and resistance among old women with dementia and their caregivers. I argue that while bureaucratic and institutional time serve as a nexus of power and a pervasive organizing principle of care structures and relations within nursing homes, old women with dementia and their caregivers disrupt these normative, dominant, and linear approaches to temporality. They do this by slowing institutional time to “make time” for connectivity, engaging in circular and repetitive forms of relationship building, and existing together in what I term “dementia time,” which is a temporal dis/orientation that explores alternate spacetimes and realities and finds meaning and value in self-contained, nonlinear, intermittent, irrational, and idiosyncratic moments. This research has theoretical and applied implications regarding how disability, aging, and feminist studies understand temporal constructions of care and how a more just system of care might be enacted for multiply marginalized women giving and receiving care in dementia units.
History
Advisor
Heller, Tamar
Chair
Heller, Tamar
Department
Disability and Human Development
Degree Grantor
University of Illinois at Chicago
Degree Level
Doctoral
Degree name
PhD, Doctor of Philosophy
Committee Member
Sandahl, Carrie
Richie, Beth
Grossman, Brian R
Kinney, Jennifer M