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缓冲还是利刃:阿尔茨海默病患者夫妻关系中的亲密感。

Buffer or Blade: Perceived relationship closeness in couples navigating Alzheimer's.

机构信息

Department of Gerontology, University of Massachusetts Boston, USA.

Department of Sociology and Anthropology, College of the Holy Cross, USA.

出版信息

J Aging Stud. 2020 Mar;52:100832. doi: 10.1016/j.jaging.2020.100832. Epub 2020 Jan 27.

DOI:10.1016/j.jaging.2020.100832
PMID:32178805
Abstract

Given the paucity of support from the welfare state, the lion's share of care for American seniors with memory loss is shouldered by their spouses who tend to be older and sometimes are frail themselves. Previous research has bifurcated attention to either accounts from diagnosed individuals or carers rather than understanding the experience within a socio-relational context of sometimes half-century long relationships. The present study was a qualitative investigation of 11 community-dwelling dyads (N = 22) living in the Greater Boston Area to understand how married heterosexual couples experience Alzheimer's. They were predominately white, highly educated individuals with mild to moderate AD and their spouses. Grounded theory methodologies were used to collect, code, and analyze all narrative study data. The data from these spousal dyads reveal that most couples approached AD as a joint challenge and were committed to maintaining their prior roles and lives for as long as possible, including shared outlooks, approaches, and activities. By showing how some couples navigate AD together rather than separately, these data provide an important counter narrative to the burden-based framing of AD in our social imagination. Regardless of perceptions of relationship closeness, all dyads employed strategies to live life positively with Alzheimer's. Despite being a highly privileged sample, or an "ideal type," these data reveal the importance of studying AD as a coupled or family event; that is, a social and relational matter, rather than simply an individual medical problem. They also highlight the importance of relationship-centered care in meeting families "where they are" in terms of existing social roles. Universalizing all AD experiences leads to an over-reliance on reductionist tropes such as "stress" and "burden" and exacerbates the very real threat to social disenfranchisement.

摘要

鉴于福利国家提供的支持甚少,记忆力丧失的美国老年人的大部分护理工作都由他们的配偶承担,而这些配偶往往年龄更大,有时自己也很脆弱。之前的研究将注意力分为两种情况,一种是来自确诊个体的描述,另一种是照顾者的描述,而不是在有时长达半个世纪的关系的社会关系背景下理解这种体验。本研究是对居住在大波士顿地区的 11 对社区居住的夫妻(N=22)进行的一项定性调查,旨在了解已婚异性夫妻如何应对老年痴呆症。他们主要是白人,受过高等教育,患有轻度至中度 AD,以及他们的配偶。扎根理论方法用于收集、编码和分析所有叙事研究数据。这些夫妻的数据显示,大多数夫妻将 AD 视为共同的挑战,并致力于尽可能长时间地维持他们之前的角色和生活,包括共同的观点、方法和活动。通过展示一些夫妻如何共同应对 AD,而不是各自应对,这些数据为我们的社会想象中基于负担的 AD 框架提供了一个重要的反叙事。无论对关系亲密程度的看法如何,所有夫妻都采用了积极应对 AD 的策略。尽管这是一个高度特权的样本,或者是一个“理想类型”,但这些数据揭示了将 AD 作为夫妻或家庭事件进行研究的重要性;也就是说,这是一个社会和关系问题,而不仅仅是一个个人医疗问题。它们还强调了以关系为中心的护理在满足家庭现有社会角色方面的重要性。将所有 AD 体验普遍化会导致过度依赖简化论的比喻,例如“压力”和“负担”,并加剧对社会排斥的真正威胁。

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