Instituting Care: A Dementia Unit in Mainland China

Abstract

As China’s population ages, its government and medical marketplace are developing new forms of institutional, non-family-based eldercare and dementia care. This dissertation explores one such site, providing an organizational ethnography of a private dementia care unit in Sichuan, China. Conclusions drawn in this dissertation are based upon 16 months of ethnographic fieldwork carried out in Sichuan between 2015 and 2019 (primarily during the 2017-2018 academic year), including observations and semi-structured and/or unstructured interviews with dementia care staff, administrators, residents, family members, and scholars. This dissertation centers on interactions between different groups of participants within the dementia care unit – residents, family members, staff and administrators at different levels, and the author – to explore how these groups ultimately come together to shape care practices. This dissertation considers how institutional care fundamentally operates as care for institutions, where interpersonal care practices must also be understood in relation to the tremendous investments of time, attention, and resources needed to create and sustain institutional care settings. This approach shows the primary research site as a flexible institution – a place where there are simultaneously institutional norms and standards shaping what is possible for the care and labor environments within its walls and a constant negotiating and stretching of those institutional boundaries. This dissertation also contributes to discussions around what “care” or “good care” means in practice, and how relationality shapes dementia care not only in interpersonal relationships between caregivers and care receivers, but also in terms of relationality among caregiving staff within an institutional setting. In exploring complicated care practices such as the use of physical restraints, this research considers what such practices reveal about how needs are understood for people living with dementia, their families, the staff who care for them, and the institutions where they live.