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2
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Int Psychogeriatr. 2017 Feb;29(2):177-179. doi: 10.1017/S104161021600199X.
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Defeating Alzheimer's disease and other dementias: a priority for European science and society.战胜阿尔茨海默病及其他痴呆症:欧洲科学与社会的当务之急。
Lancet Neurol. 2016 Apr;15(5):455-532. doi: 10.1016/S1474-4422(16)00062-4.
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AIDS Care. 2016;28(6):717-21. doi: 10.1080/09540121.2015.1124978. Epub 2016 Feb 6.
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Sociol Health Illn. 2016 May;38(4):592-609. doi: 10.1111/1467-9566.12381. Epub 2015 Nov 19.
6
Living positively with dementia: a systematic review and synthesis of the qualitative literature.积极面对痴呆症:定性文献的系统综述与综合分析
Aging Ment Health. 2016 Jul;20(7):676-99. doi: 10.1080/13607863.2015.1052777. Epub 2015 Jun 16.
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Targeting brains, producing responsibilities: the use of neuroscience within British social policy.瞄准大脑,产生责任:神经科学在英国社会政策中的应用。
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痴呆症疾病叙事的二元性及其在叙事经济中的作用。

Dualities of dementia illness narratives and their role in a narrative economy.

作者信息

Hillman Alexandra, Jones Ian Rees, Quinn Catherine, M Nelis Sharon, Clare Linda

机构信息

WISERD: Wales Institute of Social & Economic Research, Data & Methods, School of Social Sciences, Cardiff University, UK.

Centre for Research in Ageing and Cognitive Health (REACH), School of Psychology, University of Exeter, UK.

出版信息

Sociol Health Illn. 2018 Jun;40(5):874-891. doi: 10.1111/1467-9566.12729. Epub 2018 Apr 16.

DOI:10.1111/1467-9566.12729
PMID:29663446
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6033172/
Abstract

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

摘要

“叙事经济”的概念最近被提出,它是一组交换关系,通过个人经历和故事讲述,促进资源获取并成为价值来源。我们运用这一概念来指导对五名痴呆症患者和四名非正式护理人员进行的18次定性访谈的分析。我们的参与者是一个现有的痴呆症倡导团体的成员,代表了患有这种疾病的人的声音。像我们的参与者一样,越来越多处于痴呆症早期阶段的人被要求讲述他们的经历,作为形成一种政治化的“集体疾病身份”的一种方式。这些访谈提供了一个机会来研究一群积极作为痴呆症患者发声并为他们代言的人。数据中出现了四个主题:成为痴呆症患者的代言人或为他们代言;个人经历强化;责任化;以及抵抗。这些主题说明了痴呆症患者参与自身身份建构的方式,并且作为痴呆症患者的代表,它们也说明了疾病叙事产生物质和象征价值的方式。