Debating “Good” Care: The Challenges of Dementia Care in Shanghai, China
Keywords:dementia care, state-society relations, forms of life, China, humanitarian ethics, Confucian values
The increasing number of dementia sufferers in China has transformed dementia care from a private issue to a public concern. Nationwide dementia-friendly campaigns have intensified debates about what constitutes “good” care. In response to these campaigns, the Shanghai government proposes a systematic care model, which stresses the need for dementia-care units and professionalization. Non-state actors, however, focus on the relational care model, which integrates western humanitarian ethics with Confucian values. This article employs cultural and structural frameworks to examine why and how a specific form of “good” care is constructed in China. The debates about the establishment of dementia-care units and the professionalization of eldercare enable us to understand how politics shape certain forms of care.
ADI (Alzheimer’s Disease International). 2017 Dementia Friendly Communities: Global Developments (2nd edition). London: Alzheimer’s Disease International.
Barnes, Marian. 2012 Care in Everyday Life: An Ethic of Care in Practice. Bristol: The Policy Press.
Bell, Daniel. 2008 Confucian Political Ethics. Princeton: Princeton University Press.
Chen, Weixing. 2007 “Statecraft in an Era of Change: Building a Harmonious Society.” In China in the Twenty-First Century: Challenges and Opportunities, edited by Hua, Shiping, and Sujian Guo. Pp. 13-24. New York: Palgrave Macmillan.
Chu, Leung-Wing, and Iris Chi. 2008 “Nursing Homes in China.” Journal of the American Medical Directors Association 9(4):237-243.
Chua, Joycelyn Lim. 2014 In Pursuit of Good life: Aspiration and Suicide in Globalizing South India. Berkeley: University of California Press.
Confucius. 1971 Analects, the Great Learning, and the Doctrine of the Mean (James Legge, Trans.). New York: Dover Publications, Inc.
Cooke, Susette. 2009 “‘Religious Work’: Governing Religion in Reform China.” In China’s Governmentalities: Governing Chang, Changing Government, edited by Jeffreys, Elaine. Pp. 125-150. London: Routledge.
Cooper, Melinda. 2008 Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era. Seattle: Washington University Press.
Danely, Jason. 2019 “The Limits of Dwelling and the Unwitnessed Death.” Cultural Anthropology 34(2): 213-239.
Dong, Xiao-yuan, Feng Jin, and Yu Yangyang . 2017 “Relative Pay of Domestic Eldercare Workers in Shanghai, China.” Feminist Economics 23(1): 135-159.
Dong, Xinqi, Melissa A. Simon, and Martin Gorbien. 2008 “Elder Abuse and Neglect in an Urban Chinese Population.” Journal of Elder Abuse and Neglect 19(3&4): 79-96.
Farquhar, Judith, and Zhang Qicheng. 2005 “Biopolitical Beijing: Pleasure, Sovereignty, and Self-Cultivation in China’s Capital.” Cultural Anthropology 20(3): 303-327.
Fassin, Didier. 2011 Humanitarian Reason: A Moral History of the Present. Translated by Rachel Gomme. Berkeley: University of California Press.
Feldman, Ilana. 2018 “Humanitarian Care and the Ends of Life: The Politics of Aging and Dying in a Palestianian Refugee Camp.” Cultural Anthropology 32(1):42-67.
Fong, Vanessa. 2006 Only Hope: Coming of Age under China’s One-Child Policy. Stanford, CA: Stanford University Press.
Gao, Quan, and Junxi Qian. 2019 “Migrant Workers in an Era of Religious Revival: Industrial Capitalism, Labor and Christianity in Shenzhen.” The China Quarterly, https://doi.org/10.1017/S0305741019000766.
Goffman, Erving. 1963 Stigma: Notes on the Management of Spoiled Identity. Silmon and Schuster Ink.
Greenhalgh, Susan. 2008 Just One Child: Science and Policy in Deng’s China. Berkeley: University of California Press.
Greenhalgh, Susan, and Edwin Winckler. 2005 Governing China’s Population: From Leninist to Neoliberal Biopolitics. Stanford: Stanford University Press.
Harwood, Russell. 2009 “Negotiating Modernity at China’s Periphery: Development and Policy Interventions in Nujiang Prefecture.” In China’s Governmentalities: Governing Chang, Changing Government, edited by Jeffreys, Elaine. Pp. 63-87. London: Routledge.
Hua, Shiping, and Sujian Guo, eds. 2007 China in the Twenty-First Century: Challenges and Opportunities. New York: Palgrave Macmillan.
Ikels, Charlotte. 1998 “The Experience of Dementia in China.” Culture, Medicine, and Psychiatry 22: 257-283.
----, ed. 2004 Filial Piety: Practice and Discourse in Contemporary East Asia. Stanford: Stanford University Pr
----. 2006 “Economic Reform and Intergenerational Relationships in China.” Oxford Development Studies 34(4):387-400.
Jeffreys, Elaine, ed. 2009 China’s Governmentalities: Governing Change, Changing Government. London: Routledge.
Jervis, Lori L. 2001 “The Pollution of Incontinence and the Dirty Work of Caregiving in a U.S. Nursing Home.” Medical Anthropology Quarterly 15:84-99.
Kane, Robert, and Joan West. 2005 It Shouldn’t Be This Way: The Failure of Long-Term Care. Nashville, TN: Vanderbilt University Press.
Kaufman, Sharon. 2006 “Dementia-Near-Death and ‘Life Itself.’” In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, edited by Leibing, Annette, and Lawrence Cohen. Pp. 23-42. London: Rutgers University Press.
Kleinman, Arthur. 1999 “Experience and Its Moral Modes: Culture, Human Conditions, and Disorder.” In The Tanner Lectures on Human Values, edited by Peterson, G.B. Pp.357-420. Salt Lake City: University of Utah Press.
----. 2006 What Really Matters: Living a Moral Life amidst Uncertainty and Danger. New York: Oxford University Press.
Kleinman, Arthur, Yunxiang Yan, Jing Jun, Sing Lee, Everett Zhang, Pan Tianshu, Wu Fei, and Guo Jinhua. 2011 Deep China: The Moral Life of the Person (What Anthropology and Psychiatry Tell Us about China Today). Berkeley: University of California Press.
Kligman, Gail. 1998 The Politics of Duplicity: Controlling Reproduction in Ceausescu’s Romania. Berkeley: University of California Press.
Lee, Jieun. 2019 “Living with/out Dementia in Contemporary South Korea.” Medical Anthropology Quarterly 33(4): 501-516.
Liu, Jun-E., Tian Jun-Ye, Yue Peng, Wang Yong-Li, Du Xue-Ping, and Chen Shuang-Qin. 2015 “Living Experience and Care Needs of Chinese Empty-nest Elderly People in Urban Communities in Beijing, China: A Qualitative Study.” International Journal of Nursing Sciences 2:15-22.
Lock, Margaret. 2013 The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton, NJ: Princeton University Press.
Lora-Wainwright, Anna. 2017 Resigned Activism: Living with Pollution in Rural China. Cambridge, MA: The MIT Press.
Ramsay, Guy. 2013 Mental Illness, Dementia, and Family in China. New York: Routledge.
Redfield, Peter. 2013 Life in Crisis: The Ethical Journey of Doctors without Borders. Berkeley: University of California Press.
Rose, Nikolas. 2011 “Biological Citizenship and Its Forms.” In Governance of Life in Chinese Moral Experience: The Quest for an Adequate Life, edited by Zhang, Everett, with Arthur Kleinman, and Tu Weiming. Pp. 237-265. London: Routledge.
Rose, Nikolas, and Carlos Novas. 2005 “Biological Citizenship.” In Global Assemblages: Technology, Politics and Ethics as Anthropological Problems, edited by Ong, Aihwa, and Stephen Collier. Pp. 439-463. Malden, MA: Blackwell Publishing.
Shao, Jing. 2006 “Fluid Labor and Blood Money: The Economy of HIV/AIDS in Rural Central China.” Cultural Anthropology 21(4): 535-569.
Song, Yuting, Ruth A. Anderson, Kirsten N. Corazzini, and Wu Bei. 2014 “Staff Characteristics and Care in Chinese Nursing Homes: A Systematic Literature Review.” International Journal of Nursing Sciences 1: 423-436.
SRCA (Shanghai Research Center on Aging). 2017 Report of the Statistics of Older Population and Social Services Development in 2017. Accessed November 9, 2018. http://www.shrca.org.cn/News/detail.aspx?ID=5863&Page=0.
Taylor, Janelle. 2008 “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly 22(4): 313-335.
Ticktin, Miriam. 2011 Causalities of Care: Immigration and the Politics of Humanitarianism in France. Berkeley: University of California Press.
Tilt, Bryan. 2010 The Struggles for Sustainability in Rural China. New York: Columbia University Press.
Traphagan, John. 2000 Taming Oblivion: Aging Bodies and the Fear of Senility in Japan. Albany, NY: SUNY Press.
Tu, Weiming. 1985 Confucian Thought: Selfhood as Creative Transformation. Albany, NY: SUNY Press.
----. 1989 Centrality and Commonality: An Essay on Confucian Religiousness. Albany, NY: SUNY Press.
Uretsky, Elanah. 2015 Occupational Hazards: Sex, Business, and HIV in Post-Mao China. Stanford: Stanford University Press.
Wang, Fei., Meng Li-rong., Zhang Qinge., Li Lu., Lam Nogueira, Bernice O.C., Ng, Chee H., Ungvari, Gabor S., Hou Cai-lan., Liu Liangqi, Zhao Wei., Jia Fu-Jun., and Xiang Yu-Tao. 2018 “Elder Abuse and Its Impact on Quality of Life in Nursing Homes in China.” Archives of Gerontology and Geriatrics 78: 155-159.
Wang, Yan, and Yuan Huiyun. 2018 “What is behind High Turnover: A Questionnaire Survey of Hospital Nursing Care Workers in Shanghai, China.” BMC Hearth Service Research 18:485 https://doi.org/10.1186/s12913-018-3281-9.
Wu, Fei. 2010 Suicide and Justice: A Chinese Perspective. London: Routledge.
Yan, Hairong. 2003a “Neoliberal Governmentality and Neohumanism: Organizing Suzhi/Value Flow through Labor Recruitment Network.” Cultural Anthropology 18(4):493-523.
Yan, Yunxiang. 2003b Private Life under Socialism: Love, Intimacy, and Family Change in a Chinese Village (1949-1999). Stanford: Stanford University Press.
Zhan, Mei. 2011 “Human Oriented? Angels and Monsters in China’s Healthcare Reform.” East Asian Science Technology and Society 5(3): 291-311.
Zhang, Everett, Arthur Kleinman, and Tu Weiming, eds. 2011 Governance of Life in Chinese Moral Experience: The Quest for an Adequate Life. London: Routledge.
Zhang, Hong. 2006 “Family Care or Residential Care? The Moral and Practical Dilemmas Facing the Elderly in Urban China.” Asian Anthropology 5:57-85.
----. 2009 “The New Realities of Aging in Contemporary China: Coping with the Decline in Family Care.” In Cultural Context of Aging: World-Wide Perspective (3rd), edited by Sokolovsky, Jay. Pp. 196-215. Westport, CT: Greenwood Publishing Group.
----. 2017a “Recalibrating Filial Piety: Realigning the State, Family, and Market Interests in China.” In Transforming Patriarchy: Chinese Families in the Twenty-First Century, edited by Santos, Goncalo, and Steven Harrell. Pp. 234-250. Seattle: University of Washington Press.
Zhang, Li. 2014 “Bentuhua: Culturing Psychotherapy in Postsocialist China.” Culture, Medicine, and Psychiatry 38(2): 283-305.
----. 2010 In Search of Paradise: Middle-Class Living in a Chinese Metropolis. Ithaca, NY: Cornell University Press.
Zhang, Li, and Aihwa Ong, eds. 2008 Privatizing China: Socialism from Afar. Ithaca, NY: Cornell University Press.
Zhang, Mingyuan, with Robert Katzman, David Salmon, Jin Hua, Cai Guojun, Wang Zhengyu, Qu Guangya, Igor Grant, Elena Yu, Paul Levy, Melville R. Klauber, and William T. Liu. 1990 “The Prevalence of Dementia and Alzheimer’s Disease in Shanghai, China: Impact of Age, Gender, and Education.” Annals of Neurology 27(4):428-37
Zhang, Yan. 2017b “Context-Specific Eldercare Patterns, Cultural Categories of Elder Mistreatment, and Potential Social Causes in Post-Socialist China.” Ageing International 42(2):169-186.
----. 2018 “Governing Dementia: A Historical Investigation of the Power of States and Professionals in the Conceptualization of Dementia in China.” Culture, Medicine, and Psychiatry 42(4):862-892.
----. Forthcoming, “Between Tradition and Modernity: Experiences of Family Caregiving for Elders with Dementia in Shanghai, China,” PhD Diss. Case Western Reserve University.
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