晚期阿尔茨海默病或相关痴呆症患者清醒期的照料者评估
Caregiver appraisals of lucid episodes in people with late-stage Alzheimer's disease or related dementias.
作者信息
Griffin Joan M, Kim Kyungmin, Gaugler Joseph E, Biggar Virginia S, Frangiosa Theresa, Bangerter Lauren R, Batthyany Alexander, Finnie Dawn M, Lapid Maria I
机构信息
Division of Health Care Delivery Research and Kern Center for the Science of Healthcare Delivery, Mayo Clinic Rochester Minnesota USA.
Department of Child Development and Family Studies Research Institute of Human Ecology Seoul National University Seoul Korea.
出版信息
Alzheimers Dement (Amst). 2022 Jun 23;14(1):e12313. doi: 10.1002/dad2.12313. eCollection 2022.
INTRODUCTION
Little is known about how family caregivers who witness unexpected and spontaneous communication among people in late stages of Alzheimer's disease and related dementias (ADRD) appraise these episodes of lucidity (EL).
METHODS
In an electronic, cross-sectional survey for former and current caregivers who participate in UsAgainstAlzheimer's A-LIST, participants who reported witnessing an EL were asked how positive and stressful ELs were, if they made or changed decisions based on an EL, and what resources they sought out to explain ELs.
RESULTS
Caregivers reported 72% of ELs to be quite a bit or very positive, 17% to be stressful, and 10% to be both stressful and positive. Twelve percent of caregivers changed care plans because of ELs and 13% sought out information about ELs.
DISCUSSION
These exploratory data suggest caregiver reactions to EL vary. Caregivers may change or postpone care decisions due to EL, and few resources exist to address caregiver queries about EL.
引言
对于目睹阿尔茨海默病及相关痴呆症（ADRD）晚期患者出现意外且自发交流的家庭护理人员如何评价这些清醒时刻（EL），我们了解甚少。
方法
在一项针对参与“我们对抗阿尔茨海默病”A-LIST的前任和现任护理人员的电子横断面调查中，报告目睹过EL的参与者被问及EL有多积极和有压力，他们是否基于EL做出或改变了决策，以及他们寻求了哪些资源来解释EL。
结果
护理人员报告称，72%的EL相当积极或非常积极，17%有压力，10%既积极又有压力。12%的护理人员因EL改变了护理计划，13%寻求了有关EL的信息。
讨论
这些探索性数据表明护理人员对EL的反应各不相同。护理人员可能因EL改变或推迟护理决策，且几乎没有资源来解答护理人员关于EL的疑问。
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