关怀的限度：养老机构认知症照护的民族志研究

摘要/Abstract

摘要： 本文基于对养老机构的田野调查，揭示了认知症长者的生活世界和多重境遇。首先，病程发展中的“经验断连”改变了认知症长者的存在性状况，具体表现为自我连续性的断裂和主体间的沟通障碍。从家庭进入机构则使长者从原有的意义世界进一步脱嵌。在养老机构中，照护管理体制拆解了认知症作为一个类别范畴的操作性意义，但作为污名标签的“老年痴呆”又显现于日常的符号互动过程中，这种“正常”与“异常”的辩证关系反过来影响了认知症长者的现实处境。最后，文章呈现了认知症照护中的伦理两难和权宜性实践，并指出良善的照护应当基于具体境遇下的审慎决策和实践探索。这种特殊的照护关系也为我们提供了思考人格身份和主体间性的新的路径。

关键词: 认知症照护, 养老机构, 日常伦理, 人格, 主体间性

Abstract: This ethnographic study offers insights into the lifeworld and multiple experiences of individuals with dementia residing in nursing homes. Firstly, from the perspective of phenomenological sociology, the study delves into the "disruption of experiences" resulting from dementia, which fundamentally alters the existential situation of patients. This disruption manifests as a fracture of self-coherence and a dissociation of intersubjectivity. When entering a nursing home, patients are further detached from their previous social relationships and world of meaning. Secondly, the article explores how specific ensembles of knowledge and practice in nursing homes shape the dementia experience. Under the current care management system with ADL as its core classification framework, the operational significance of dementia as a category is to a large extent dismantled. However, the stigmatizing label "laonian chidai" (senile dementia) often appears in the daily symbolic interaction process, causing all kinds of discrimination and conflicts. The dilemma of cognitive impairment classification of nursing homes reveals the dialectic relationship between "normal" and "abnormal" in definition and operation. This in turn affects the personhood and living situation of people with dementia. Finally, this article focuses on the daily ethics of dementia care, selecting two typical care scenarios of demand response and physical restraint, to examine how caregivers respond to daily crises and adopt expedient practices. The study suggests that the special care relationship of dementia care provides us with a new perspective on personhood and intersubjectivity.

Key words: dementia care, nursing home, ordinary ethics, personhood, intersubjectivity

吴心越. 关怀的限度：养老机构认知症照护的民族志研究[J]. 社会杂志, 2023, 43(3): 162-186.

WU Xinyue. The Limits of Care: An Ethnographic Study of Dementia Care in Nursing Homes[J]. Chinese Journal of Sociology, 2023, 43(3): 162-186.

参考文献

[1] 鲍曼, 齐格蒙. 2002. 现代性与大屠杀[M], 杨渝东、史建华, 译. 南京: 译林出版社.
[2] 杜鹏、董亭月. 2018. 老龄化背景下失智老年人的长期照护现状与政策应对[J]. 河北学刊38(3): 165-170.
[3] 法桑, 迪杰. 2022. 生命使用手册[M]. 边和, 译. 上海: 华东师范大学出版社.
[4] 方洪鑫. 2021. 现代死亡的道德形构: 社会想象与日常实践[J]. 社会41(4): 182-215.
[5] 高夫曼, 厄文. 2012. 精神病院: 论精神病患与其他被收容者的社会处境[M]. 群学翻译工作室, 译. 台北: 群学出版.
[6] 洪晨硕. 2014. 弹性病况: 失智家庭的照顾轨迹[J]. 台湾社会学28: 59-96.
[7] 凯博文. 2020. 照护: 哈佛医师和阿尔茨海默病妻子的十年[M]. 姚灏, 译. 北京: 中信出版社.
[8] 李荣荣. 2017. 伦理探究: 道德人类学的反思[J]. 社会学评论(5): 22-34.
[9] 摩尔, 安玛莉. 2018. 照护的逻辑: 比赋予病患选择更重要的事[M]. 吴嘉苓, 等, 译, 新北: 左岸文化.
[10] 舒茨, 阿尔弗雷德. 2012. 社会世界的意义构成[M]. 游淙祺, 译. 北京: 商务印书馆.
[11] 邵永生. 2018. 境遇论在生命伦理学的应用研究[M]. 北京: 中国社会科学出版社.
[12] 孙飞、张秋霞、李霞. 2020. 建设认知症友善机构: 中美实践经验的启示[J]. 中国护理管理20(9): 1292-1298.
[13] 孙飞宇. 2013. 方法论与生活世界: 舒茨主体间性理论再讨论[J]. 社会33(1): 38-74.
[14] 孙飞宇. 2017. 舒茨的生活世界理论及其进一步发展[J]. 学术交流(1): 133-139.
[15] 王春光. 2016. 对作为基层社会的县域社会的社会学思考[J]. 北京工业大学学报(社会科学版)(1): 1-11.
[16] 吴心越. 2018. "脆弱"的照顾: 中国养老院中的身体、情感与伦理困境[J]. 台湾社会研究季刊110: 1-36.
[17] 吴心越. 2019. 市场化的照顾工作: 性别、阶层与亲密关系劳动[J]. 社会学评论7(1): 75-86.
[18] 袁长庚. 2019. 中国民族志研究中, 探索人类学的伦理转向[OL]. 澎湃新闻. https://www.thepaper.cn/newsDetail_forward_3932534.
[19] 朱剑锋. 2021. 医学人类学十二论[M]. 上海教育出版社.
[20] Adams, Trevor, and Paula Gardiner. 2005. "Communication and Interaction within Dementia Care Triads: Developing a Theory for Relationship-Centred Care." Dementia 4(2): 185-205.
[21] Cohen, Lawrence. 1998. No Aging in India: Alzheimer's, the Bad Family and Other Modern Things. Berkeley: University of California Press.
[22] Cohen, Lawrence. 2006. "Introduction: Thinking about Dementia." In Thinking about Dementia : Culture, Loss, and the Anthropology of Senility, edited by Annette Leibing and Lawrence Cohen. New Brunswick, N.J. : Rutgers University Press: 1-19.
[23] Cook, Joanna, and Catherine Trundle. 2020. "Unsettled Care: Temporality, Subjectivity, and the Uneasy Ethics of Care." Anthropology and Humanism 45(2): 178-183.
[24] Chatterji, Roma. 1998. "An Ethnography of Dementia." Culture, Medicine and Psychiatry 22 (3): 355-382.
[25] Chatterji, Roma. 2006. "Normality and Difference: Institutional Classification and the Constitution of Subjectivity in a Dutch Nursing Home." In Thinking about Dementia : Culture, Loss, and the Anthropology of Senility, edited by Annette Leibing and Lawrence Cohen. New Brunswick, N.J. : Rutgers University Press: 218-239.
[26] Davis, Daniel. 2004. "Dementia: Sociological and Philosophical Constructions." Social Science & Medicine 58: 369-378.
[27] Das, Veena. 2012. "Ordinary Ethics." In A Companion to Moral Anthropology, edited by Didier Fassin. New York: Wiley-Blackwell.
[28] Dyring, Rasmus, and Lone Grøn. 2021. "Ellen and the Little One: A Critical Phenomenology of Potentiality in Life with Dementia." Anthropological Theory 22(1): 3-25.
[29] Fox, Patrick. 1989. "From Senility to Alzheimer's Disease: The Rise of the Alzheimer's Movement." Milbank Quarterly 67(1): 58-102.
[30] Gastmans, Chris, and Koen Milisen. 2006. "Use of Physical Restraint in Nursing Homes: Clinical-Ethical Considerations." Journal of Medical Ethics 32(3): 148-152
[31] Heliker, Diane, and Alwilda Scholler-Jaquish. 2006. "Transition of New Residents to a Long-Term Care: Basing Practice on Residents' Perspective." Journal of Gerontological Nursing 32(9): 34-42.
[32] Ikels, Charlotte. 1998. "The Experience of Dementia in China." Culture, Medicine and Psychiatry 22(3): 257-283.
[33] Ikels, Charlotte. 2002. "Constructing and Deconstructing the Self: Dementia in China." Journal of Cross-Cultural Gerontology 17(3): 233-251.
[34] Jeong, Jong-min. 2020. "'Please Call My Daughter': Ethical Practice in Dementia Care as An Art of Dwelling." HAU: Journal of Ethnographic Theory 10 (2): 530-547.
[35] Kaufman, Sharon. 2006. "Dementia-Near-Death and Life Itself." In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, edited by Annette Leibing and Lawrence Cohen. New Brunswick, N.J. : Rutgers University Press: 23-42.
[36] Kitwood, Tom. 1993. "Towards a Theory of Dementia Care: The Interpersonal Process." Ageing and Society 13(1): 51-67.
[37] Kitwood, Tom. 1997. Dementia Reconsidered: The Person Comes First. Buckingham and Philadelphia: Open University Press.
[38] Konots, Pia. 2006. "Embodied Selfhood: An Ethnographic Exploration of Alzheimer's Disease." In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, edited by Annette Leibing and Lawrence Cohen. New Brunswick, N.J. : Rutgers University Press: 218-239.
[39] Lambek, Michael. 2010. "Introduction." In Ordinary Ethics: Anthropology, Language and Action, edited by Michael Lambek. New York: Fordham University Press.
[40] Lock, Margaret. 2013. The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton: Princeton University Press.
[41] Macdonald, Gaynor. 2018. "Why 'Person-Centred' Care is Not Enough: A Relational Approach to Dementia." In Dementia as Social Experience: Valuing Life and Care, edited by Gaynor Macdonald and Jane Mears. New York: Taylor & Francis.
[42] Mattingly, Cheryl. 2014. Moral Laboratories: Family Peril and the Struggle for a Good Life. Oakland: University of California Press.
[43] McKearney, Patrick. 2020. "Challenging Care: Professionally Not Knowing What Good Care Is." Anthropology and Humanism 45(2): 223-232.
[44] McKearney, Patrick, and Tyler Zoanni. 2018. "Introduction: For an Anthropology of Cognitive Disability." The Cambridge Journal of Anthropology 36 (1): 1-22.
[45] Mclean, Athena. 2006. "Coherence without Facticity in Dementia: The Case of Mrs. Fine." In Thinking about Dementia: Culture, Loss, and the Anthropology of Senility, edited by Annette Leibing and Lawrence Cohen. New Brunswick, N.J. : Rutgers University Press: 157-179.
[46] Mclean, Athena. 2016. The Person in Dementia: A Study of Nursing Home Care in the US. Toronto: University of Toronto Press.
[47] Mol, Annemarie, Ingunn Moser, and Jeannette Pols. 2010. "Care: Putting Practice into Theory." In Care in Practice: On Tinkering in Clinics, Homes and Farms, edited by Annemarie Mol, Ingunn Moser and Jeannette Pols. Bielefeld: Transcript Verlag.
[48] Rosenberg, Charles E. 1999. "Meanings, Policies, and Medicine: On the Bioethical Enterprise and History." Daedalus 128(4): 27-46.
[49] Russ, Julienne. 2005. "Love's Labor Paid for: Gift and Commodity at the Threshold of Death." Cultural Anthropology 20(1): 128-155.
[50] Sweeting, Helen, and Mary Gilhooly. 1997. "Dementia and the Phenomenon of Social Death." Sociology of Health & Illness 19(1): 93-117.
[51] Taylor, Janelle. 2008. "On Recognition, Caring, and Dementia." Medical Anthropology Quarterly 22(4): 313-335.
[52] Zhang, Yan. 2020. "Debating'Good'Care: The Challenges of Dementia Care in Shanghai, China." Anthropology & Aging 41(1): 52-68.