協商失智經驗：診斷裝配、生活秩序與身份認同

Negotiating Dementia: Diagnostic Assemblage, Order of Everyday Life and Identity

洪晨碩(Chen-Shuo Hong)

指導教授 ： 吳嘉苓

國立臺灣大學/社會科學院/社會學研究所/碩士(2013年)

https://doi.org/10.6342/NTU.2013.10424

摘要

在台灣，失智症逐漸成為一個社會大眾關注的議題。然而，關於失智症在台灣的歷史與失智者的實際生活經驗，至今研究仍相對稀少。本研究嘗試從歷史與日常生活的角度出發，分析：(1)台灣社會如何出現失智診斷，其過程是否發生變遷？(2)失智者在家庭的生活經驗為何？(3)失智者的老人日間照顧經驗，以及與照顧服務員之間的照顧關係為何？本研究以醫療化為主要理論框架。資料蒐集方法包括訪談、參與觀察與次級資料分析。總共訪談20位家屬。參與觀察1間老人日間照顧機構，接觸12位使用該機構的老人，訪談9位機構專業人員。研究發現是：(1)台灣失智症診斷指引與症狀概念的裝配過程，主要是透過在地醫療專業在其內部分化過程中，對於不同時期的特定國際與在地條件的認知、協商與採納後所造成的結果。此過程並非單純科學新知的發現，而是鑲嵌著特定的知識、技術與權力脈絡。(2)家庭失智照顧軌跡的生活秩序，主要由失智者與家屬透過各式隱形工作來維持跟管理，並與醫療和其他社會因素產生交互作用。失智者的身份認同則是一個在正常�不正常、疾病�完整的人身份之間不斷變動的協商過程，會因互動對象與情境而發生變異。(3)失智者在日間照顧機構中透過各式隱形工作來施展行動能力。照顧服務員則是在特定的日間照顧功能轉型、精神行為症狀概念興起和照顧理論的變遷下，與失智者發展出立基於不同身份的情緒照顧實作。本研究的實踐意涵在於強調失智者並非如常識觀點或主流論述所說如此被動或依賴，而是如你我一般積極的參與在日常生活的維持、創造與協商中。理論意涵方面，本研究強調醫療化理論應明確注意到特定的跨社會與歷史經驗、醫療化定義可能具有的面向不一致性，並應重視醫療與其它因素在日常生活經驗中的交互作用。

關鍵字

失智 ； 醫療化 ； 診斷裝配 ； 生活秩序 ； 身份認同

並列摘要

In Taiwan, dementia has become an important public issue; however, the social history of dementia and the lived experience of people with dementia still need more research. This thesis uses the medicalization framework to analyze: (1) How did the diagnosis of dementia develop in Taiwan? Has the process ever been transformed? (2) What is the lived experience of people with dementia in family? (3) What is the lived experience of people with dementia in the day care for the elderly? What is the care relationship between the people with dementia and the care workers? My research gathered materials through document analysis, participant observation, and interview with twenty family caregivers. I also participated in one day care for the elderly through observing twelve service recipients and interviewing with nine service providers. The result is: (1) The global assemblages of diagnosis guideline and symptom of dementia were manufactured by the different local medical professions. They recognized, negotiated, and accepted the global assemblages in the specific international and local conditions with the internal division of medical profession. The process embedded the knowledge, technology, and politics instead of the discovery of science and medicine. (2) The order of everyday life in dementia care trajectory in family is sustained and managed by the people with dementia and the family caregivers through using many kinds of invisible work, and it interacts with the impact of medicine and the social conditions. The identity of people with dementia is continually negotiated between the normal and abnormal, patient and whole person. This process varies with the interaction with others and dependents on different situations. (3) The people with dementia use invisible work to employ their agency in the day care for the elderly. The care workers develop different emotional care practices based on different identities of people with dementia. The care relationships reveal the influence of the function shifting of day care for the elderly, the concepts of behavioral and psychological symptoms of dementia, and the multiple care theories. The contributions of this research challenge the stereotype of people with dementia who are regarded as victims and need to depend on other people. In contrast, the people with dementia may actively participant in maintaining, creating, and negotiating their lived experience in everyday life. The theoretical implications of this research revise the theory of medicalization, making this theory to pay more attention to the cross-culture and historical context, the inconsistency of multi-dimensional definition, and the interaction between medicine and other social conditions at the everyday life level.

並列關鍵字

dementia ； medicalization ； diagnostic assemblage ； order of everyday life ； identity

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