Kim Kyungmin, Bangerter Lauren R, Liu Yin, Finnie Dawn M, Lapid Maria I, Gaugler Joseph E, Griffin Joan M
Department of Child Development and Family Studies, College of Human Ecology, Seoul National University, Seoul, Korea.
Integrated Major in Regional Studies and Spatial Analytics, Seoul National University, Seoul, Korea.
Innov Aging. 2025 Apr 23;9(6):igaf036. doi: 10.1093/geroni/igaf036. eCollection 2025.
Lucid episodes (LEs) in people living with late-stage dementia have been reported anecdotally. However, how this seemingly unexpected phenomenon is experienced by family caregivers is less known. Focusing on the two most common groups of informal caregivers, spouses and adult children, this study examined variability in family caregivers' experiences with LEs-whether they exhibit differential appraisals of and responses to LEs.
Using a sample of former/bereaved and current family caregivers from UsAgainstAlzheimer's A-LIST, we conducted an online survey of spouse and child caregivers ( = 387). We conducted semistructured interviews among a subset of caregivers who witnessed a LE ( = 22).
Overall, child caregivers were more likely to witness a LE than spouse caregivers. Among former/bereaved caregivers who witnessed a LE ( = 139), spouses were likely to report nonverbal communication during LEs, appraise LEs more negatively, and make changes in care decisions, such as end-of-life planning and financial decisions, compared to adult children. Among current caregivers who witnessed a LE ( = 80), spouses often reported no special circumstances preceding LEs, whereas children linked LEs to friend/family visits. No significant differences were found in positive and negative appraisals of LEs between current spouse and child caregivers. Content analysis of qualitative interviews revealed the contexts underlying these differences.
Differences between spouses and adult children in their experiences with LEs are related to their different caregiving contexts, including relationship history, living arrangements, expectations, motivations, and caregiving resources.
晚期痴呆症患者出现清醒期（LEs）的情况已有轶事报道。然而，家庭护理人员如何体验这一看似意外的现象却鲜为人知。本研究聚焦于两类最常见的非正式护理人员，即配偶和成年子女，考察了家庭护理人员在清醒期经历方面的差异——他们对清醒期是否表现出不同的评价和反应。
我们从美国抗老年痴呆症组织A-LIST中选取了曾经担任护理人员/失去亲人的护理人员以及现任家庭护理人员作为样本，对配偶和子女护理人员（n = 387）进行了在线调查。我们对一部分目睹过清醒期的护理人员（n = 22）进行了半结构化访谈。
总体而言，子女护理人员比配偶护理人员更有可能目睹清醒期。在目睹过清醒期的曾经担任护理人员/失去亲人的护理人员（n = 139）中，与成年子女相比，配偶在清醒期更有可能报告非语言交流，对清醒期的评价更负面，并在护理决策上做出改变，如临终规划和财务决策。在目睹过清醒期的现任护理人员（n = 80）中，配偶常称清醒期之前没有特殊情况，而子女则将清醒期与朋友/家人来访联系起来。现任配偶和子女护理人员对清醒期的正面和负面评价没有显著差异。定性访谈的内容分析揭示了这些差异背后的背景情况。
配偶和成年子女在清醒期经历上的差异与他们不同的护理背景有关，包括关系历史、生活安排、期望、动机和护理资源。
