A LANDSCAPE OF DEMENTIA CARE POLITICS, PRACTICES, AND MORALITY IN SHANGHAI, CHINA By YAN ZHANG Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology CASE WESTERN RESERVE UNIVERSITY May, 2020 CASE WESTERN RESERVE UNIVERSITY SCHOOL OF GRADUATE STUDIES We hereby approve the thesis/dissertation of Yan Zhang candidate for the degree of Ph.D.*. Committee Chair Lihong Shi Committee Member Atwood Gaines Committee Member Melvyn Goldstein Committee Member Gary Deimling Committee Member Jeanne Shea (University of Vermont) Date of Defense February 24, 2020 *We also certify that written approval has been obtained for any proprietary material contained therein Contents Acknowledgements ..................................................................................................... 1 Abstract ....................................................................................................................... 4 Introduction ................................................................................................................. 6 Chapter 1 Governing Dementia: A Historical Investigation of the Power of States and Professionals in the Conceptualization of Dementia in China ........................... 53 Chapter 2 Negotiating a Sociopolitical Space for Elders with Dementia in Shanghai ................................................................................................................................... 93 Chapter 3 Debating “Good” Care: The Challenges of Dementia Care in Shanghai119 Chapter 4 The Family Politics of Dementia Care: Decision-Making and Care Norms in Chinese Families ................................................................................................. 150 Chapter 5 Care as Stewardship: Embodied Practices of Family Dementia Caregiving in Shanghai.............................................................................................................. 203 Chapter 6 Resigned Familism: The Burden Discourse of Dementia Care ............. 249 Chapter 7 Transitions of Care and Transformations of Relationships .................... 294 Chapter 8 Moral Encounters of “the Generation in the Middle”: Dilemmas and Strategies in an Aging Society ................................................................................ 341 Conclusion: Politics, Practices, and Morality of Dementia Care ............................ 378 References ............................................................................................................... 388 Acknowledgements A number of people contributed to this project. Before my Ph.D. training in Anthropology, I received guidance and encouragement from Dr. Pan Tianshu, Dr. Jeanne Shea, Dr. Hongtu Chen, and Dr. Arthur Kleinman who had and still have several projects on aging in China. Without their genuine guidance, I would not have been able to have the opportunity to study medical anthropology. During my Ph.D. training at Case Western Reserve University (CWRU), my advisor Dr. Lihong Shi, who supported my development in so many ways and gave me time and space to figure out what I was taking about, and Dr. Atwood Gaines guided me in the final years and helped me to believe that this was a project worth finishing. Dr. Jeanne Shea, a steadfast mentor, was always supportive of my project at any time when I needed help. Dr. Melvyn Goldstein’s suggestions for improving the representativeness of the sample and Dr. Gary Deimling’s suggestions for enriching the discourse of family dementia caregiving were equally important during my grant applications and fieldwork. Their contributions made this project significantly better than it would have been otherwise. I am grateful to all of them. Throughout the process of conducting the research and writing my dissertation, I have accumulated many debts of gratitude. First of all, I am deeply grateful to those family caregivers and dementia sufferers who have to remain anonymous. Two families welcomed me to stay with them for about three months, other families shared with me their stories. Conducting research not only allows me to understand family dementia 1 caregiving, but also enriches my philosophy of life. Everyone has something to share and benefits from the opportunity to listen and to be listened to. Second, I especially want to thank my former colleagues in Xintu Community Health Promotion Center in Shanghai. Without their multiple community-based programs and connections with various stakeholders, I would not have been able to collect comprehensive data to articulate the dynamics of dementia care and population aging in China. I also want to thank various stakeholders, including nursing home managers, nursing aides, government officials, non-governmental organization directors, eldercare entrepreneurs, community volunteers, residents, and many others. During my fieldwork, they welcomed me into their institutions and shared with me their thoughts about the urgency of developing dementia care in China. I also benefited from discussions in small scale meetings and nationwide conferences. Third, I received support from Dr. Yin You and Dr. Li Peng who welcomed me into the memory clinic and introduced me to family caregivers and dementia patients there. Without their wholehearted support, I would not be able to talk to many family caregivers. I am indebted to Dr. Li Chunbo, Dr. Zhang Mingyuan, Dr. Huang Yanyan, and Dr. Cui Huashun who also shared with me valuable resources and thoughts regarding dementia care in China. Fourth, I want to thank my family over the years who had the good sense not to ask me about my dissertation and my future career development. Without my sister’s friendship and the support of my parents and my fiancé, conducting fieldwork and writing dissertation would have never been achieved. I also want to thank those who helped me to think more clearly about this topic. A special thank you to my first new friend at 2 CWRU Dr. Ariel Cascio, and to Dr. Jessica Birch, Dr. Andrea Milne, and Dr. Anthony Wexler—whose suggestions and encouragements became so valuable during my Ph.D. training at CWRU. The research for this project was supported by a summer research grant from the Social Justice Institution Fellowship and another one from the Eva L. Pancoast Memorial Fellowship at CWRU, a grant on China studies from American Council of Learned Societies, and a research grant from the Wenner-Gren Foundation for Anthropological Research. Writing my dissertation was supported by College of Arts & Sciences Fellowship at CWRU. I thank the above institutions for their financial support that made the research and the completion of my dissertation possible. Chapter 1 was published as a journal article in Culture, Medicine, and Psychiatry, 42(4):862-892; and Chapter 3 was published in Anthropology & Aging; and Chapter 2 is under reviewing. 3 A Landscape of Dementia Care Politics, Practices, and Morality in Shanghai, China Abstract By YAN ZHANG “A Landscape of Dementia Care: Politics, Practices, and Morality in Shanghai, China” addresses the impact of biopolitical discourses on the practice of dementia care and the associated moral struggles with family dementia caregiving during the process of modernization in China. The specific biopolitical discourses primarily impacting dementia care include the biomedical representation of dementia as a mental disorder rooted in biological malfunction of the brain and the national legislation underscoring the obligation of families to support and care for elders. As China has joined the global fight against dementia, a list of Western humanistic care practices have been introduced to improve the condition of dementia sufferers. Unfortunately, these Western practices have caused conflicts with traditional mode of dementia care. Contrary to the established view that care arises from caregivers’ internal convictions, I argue that social configurations 4 have not only shaped new care paradigms, but also created tensions within care practices. These tensions stem from the conflict between biopolitical governance and local resistance, between technological care and hands-on care, and between traditional norms and modern ethics. From these tensions, new care paradigms are emerging. At the society level, these new paradigms include the neurologist-centered medical care (which is replacing the traditional psychiatrist-centered dementia care), the establishment of dementia-care units in eldercare facilities, and the advocacy of relational care for dementia sufferers. These different care paradigms complicate the biopolitical discourses, which further affect the perceptions and practices of dementia care among family caregivers. Within domestic settings, care as stewardship, in which family caregivers actively incorporates modern techniques to improve care outcomes, and resigned familism, in which family caregivers do not fully resign from caregiving nor are fully compassionate to patients, are two paradigms closely related to biopolitical discourses. Due to the overwhelming care burden, family caregivers face moral dilemmas of taking care of dementia sufferers. These dilemmas include fulfilling one’s moral and legal duties without protecting individual rights and favoring collective interests by unwillingly sacrificing personal interests. Without effective social support, family caregivers have to figure out individual strategies to solve these dilemmas. Potential strategies include embracing self-care and revitalizing traditional