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从“到底发生了什么?”到“模糊的中间地带”再到“习惯新常态”:年轻人围绕应对父母痴呆症的人生叙事

From "What the Hell Is Going on?" to the "Mushy Middle Ground" to "Getting Used to a New Normal": Young People's Biographical Narratives Around Navigating Parental Dementia.

作者信息

Hall Mel, Sikes Pat

机构信息

University of Sheffield, Sheffield, UK.

出版信息

Illn Crises Loss. 2018 Apr;26(2):124-144. doi: 10.1177/1054137316651384. Epub 2016 May 26.

Abstract

The number of young people who have a parent with dementia is rising as a result of improvements in diagnosis of young onset variants and demographic shifts. There has, however, been very little research focusing on this group. Accounts elicited as part of the Perceptions and Experiences of Young People With a Parent With Dementia described the period, usually some years, leading up to a diagnosis of a dementia and then the progress of the condition post diagnosis. These narratives were characterized by confusion, uncertainty, trauma, and distress as the young people struggled to make sense of the significant and often extreme, behavioral and attitudinal changes that were symptoms of the illness. This article describes and discusses how the young people experienced and navigated the temporal messiness and consequent biographical disruption arising from parental dementia.

摘要

由于早发性痴呆变体诊断的改善和人口结构的变化,父母患有痴呆症的年轻人数量正在上升。然而,针对这一群体的研究却非常少。作为“父母患有痴呆症的年轻人的认知与经历”项目的一部分所收集的描述,讲述了在痴呆症诊断之前通常持续数年的一段时间,以及诊断之后病情的发展。这些叙述的特点是困惑、不确定、创伤和痛苦,因为年轻人努力理解那些作为疾病症状的重大且往往极端的行为和态度变化。本文描述并讨论了年轻人如何经历并应对因父母患痴呆症而产生的时间混乱以及随之而来的人生经历中断。

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