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《你就是那个人》:痴呆症患者照护者和临床医生对意识清醒的看法。

"It's You": Caregiver and Clinician Perspectives on Lucidity in People Living With Dementia.

机构信息

BerbeeWalsh, Department of Emergency Medicine, University of Wisconsin-Madison School of Medicine & Public Health, Madison, Wisconsin, USA.

Center for Health Disparities Research, University of Wisconsin-Madison School of Medicine & Public Health, Madison, Wisconsin, USA.

出版信息

Gerontologist. 2023 Jan 24;63(1):13-27. doi: 10.1093/geront/gnac095.

Abstract

BACKGROUND AND OBJECTIVES

Episodes of lucidity (ELs), or a transient return of abilities believed to be lost in people living with dementia, are a growing area of interest. These events hold important implications for care, caregiving, and our understanding of underlying etiologies. Research on ELs is largely limited to retrospective reports. The perspectives of professional and family caregivers on ELs and research approaches can inform efforts to define and study lucidity. The present study examined family caregiver and hospice clinician experiences with and perspectives on ELs in people living with dementia and observational approaches to studying these events.

RESEARCH DESIGN AND METHODS

This exploratory, descriptive qualitative study employed semistructured interviews (N = 20 caregivers, N = 6 clinicians). Data were analyzed using Rapid Identification of Themes and subsequent duplicate review of interview data to enhance trustworthiness.

RESULTS

Most participants readily recalled events they perceived as ELs, describing a transient return of abilities they felt was significant and/or meaningful. Defining features, interpretations, and the perceived impact of ELs varied, although ELs were commonly conceptualized as a manifestation of self. Caregivers described extensive efforts to detect patterns and supportive social conditions for ELs. Participants supported use of audiovisual observation to study ELs and provided recommendations for privacy, workflow, and caregiver engagement.

DISCUSSION AND IMPLICATIONS

Interpretations of ELs are heterogeneous, and recognition of these events may necessitate close familiarity with the person living with dementia. Participants endorse observational approaches and integration of caregivers in this research.

摘要

背景与目的

意识清晰期(ELs),即痴呆患者的部分能力短暂恢复,这些能力曾被认为已经丧失,这是一个日益受到关注的领域。这些事件对护理、照护以及对潜在病因的理解具有重要意义。目前,关于 ELs 的研究主要局限于回顾性报告。专业护理人员和家庭护理人员对 ELs 的看法以及研究方法可以为定义和研究意识清晰期提供信息。本研究调查了痴呆患者的家庭护理人员和临终关怀临床医生对 ELs 的体验和看法,以及观察性研究这些事件的方法。

研究设计和方法

本探索性、描述性的定性研究采用半结构式访谈(N=20 名护理人员,N=6 名临床医生)。使用快速识别主题和随后对访谈数据进行重复审查的方法进行数据分析,以提高可信度。

结果

大多数参与者很容易回忆起他们认为是 ELs 的事件,描述了他们认为重要和/或有意义的能力短暂恢复。ELs 的定义特征、解释和感知影响各不相同,尽管 ELs 通常被概念化为自我的表现。护理人员描述了为发现 ELs 的模式和支持性社会条件所做的大量努力。参与者支持使用视听观察来研究 ELs,并为隐私、工作流程和护理人员参与提供了建议。

讨论与意义

ELs 的解释存在异质性,识别这些事件可能需要对患有痴呆症的人有密切的了解。参与者支持观察性方法和将护理人员纳入这项研究。

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