彈性病況：失智家庭的照顧軌跡

Flexible Patienthood: Care Trajectory in Family Living with Dementia

作為一個有診斷類別，卻無有效治療方法的病症類型，失智症如何影響失智家庭的日常生活？本研究利用家屬訪談與家庭參與觀察，以及相關檔案資料，分析失智家庭的照顧軌跡，探索醫療與照顧的不確定性如何影響失智家庭的照顧生活，以及家庭成員如何因應這些不確定性。本文發現，失智家庭會利用多樣化的照顧工作，管理失智照顧軌跡中的隨遇性與協商失智者的多重身分。這種彈性變動的協商狀態，本文稱作「彈性病況」。此概念除了強調不確定性的多樣化，凸顯出時間軸中各種照顧工作與病人身分的安排與調整，更嘗試連結既有的社會結構，如藥物補助政策、對成年人的角色期待與疾病污名。相較過去失智研究把失智者與家屬當成疾病的受害者，本文從照顧軌跡的角度，呈現患者與家屬的積極行動，同時挑戰將失智者化約為疾病載體與無行為能力者的童稚化策略。

This study explores the effects of dementia on its care trajectory in the family setting. Based on in-depth interviews of family caregivers, naturalistic observations, and archival data, the present study examines uncertainty in medical care and how people with dementia and their family caregivers deal with it. This study finds that patients and caregivers tend to adopt various strategies to deal with the contingencies incurred by dementia and negotiate between the patient’s multiple identities at different stages of care trajectories. I refer to this dynamic process of on-going negotiation as “flexible patienthood,” which provides a unique lens for analyzing the handling of contingency with regards to work arrangements and identity shifts. Flexible patienthood is constrained by social structures, such as the drug reimbursement system, socially assigned roles, and the stigmatization of dementia. In contrast to previous studies, which regard people with dementia and their family caregivers as “victims of dementia,” this study highlights their proactive participation and challenges the infantilization of people with dementia.