Hastings Cent Rep. 2023 Sep;53(5):17-29. doi: 10.1002/hast.1485.
Agency is talked about by many as something that people living with dementia lose, once they've lost much else-autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision-making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia-friendly environments.
许多人认为,一旦患有痴呆症的人失去了其他许多东西,例如自主性、身份和隐私等,他们就会失去代理权。虽然丧失语言可能捕捉到了痴呆症中发生的一些情况,但它可能掩盖了患有痴呆症的人和他们的亲人如何通过分享记忆、语言和决策能力来共同拥有代理权。我们认为,采用丧失框架的一个后果是,默认的应对代理权变化的方式是用家庭成员的代理权来替代所谓的患有痴呆症的人的丧失的代理权。我们主张采用一种替代框架,将共同拥有代理权视为患有痴呆症的人的一个核心特征。我们借鉴关系理论家的工作,主张将痴呆症中的代理权视为基本的共同拥有,并探讨其对治疗、护理人员支持和建立适合痴呆症患者的环境的潜在影响。