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痴呆症患者在议会中的政治存在。德国议员的痴呆症代表性工作的定性研究。

The political presence of persons living with dementia in parliament. A qualitative study into the dementia representation work of German parliamentarians.

机构信息

Erasmus School of Health Policy & Management, Erasmus University Rotterdam, Rotterdam 3000 DR, the Netherlands.

出版信息

J Aging Stud. 2022 Jun;61:101026. doi: 10.1016/j.jaging.2022.101026. Epub 2022 Mar 26.

Abstract

Parliamentary representation of persons living with dementia is important because it has the potential to enhance the lives of affected individuals. However, studies that take a closer look at the parliamentarization of dementia are few and far between. Drawing on recent advances in political science representation theory, this paper shows how parliamentary attention to persons living with dementia takes the form of representative claims. An interpretive analysis of 56 parliamentary documents revealed that German parliamentarians voiced what they considered to be the political wants and needs of persons living with dementia in different debates on a broad range of topics. They also created a political presence for persons living with dementia in representative claims about other groups - such as professional carers. Both types of claims were one-dimensional in nature: parliamentarians reduced persons living with dementia to their impairments, rendering them politically visible as vulnerable persons who need to be protected by the same society that their existence is putting a "burden" on. A more multi-dimensional political presence for persons living with dementia is required. In order to improve their dementia representation work, it is important that parliamentarians engage with persons living with dementia and understand how they wish to be engagedin parliament or otherwise.

摘要

痴呆症患者的议会代表很重要,因为这有可能改善受影响个人的生活。然而,对痴呆症议会化进行深入研究的研究甚少。本文利用政治学代表理论的最新进展,展示了议会对痴呆症患者的关注是如何以代表性诉求的形式出现的。对 56 份议会文件的解释性分析表明,德国议员在不同的辩论中就广泛的主题表达了他们认为是痴呆症患者的政治诉求和需求。他们还在关于其他群体(如职业护理人员)的代表性诉求中为痴呆症患者创造了政治存在。这两种诉求在本质上都是一维的:议员们将痴呆症患者简化为他们的障碍,使他们作为弱势群体在政治上可见,需要由同样的社会来保护,而他们的存在却给社会带来了“负担”。需要为痴呆症患者提供更具多维性的政治存在。为了改善他们对痴呆症的代表工作,议员们与痴呆症患者接触并了解他们希望如何在议会中或其他方面参与是很重要的。

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