Integrated Brain Health Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Frontotemporal Disorders Unit, Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Gerontologist. 2022 Sep 7;62(8):1173-1184. doi: 10.1093/geront/gnab162.
The coronavirus disease 2019 (COVID-19) pandemic created unexpected stressors for society and could disproportionately affect more vulnerable groups. One such group is couples facing young-onset dementias (YOD), who experience pandemic-induced stressors alongside ongoing YOD-related stressors (e.g., progressive symptoms, increased caregiving needs). Using a qualitative design, our objective was to characterize the experiences of couples living with YOD early in the COVID-19 pandemic and the impact on couples' 'relationships' and well-being.
Couples (N = 23) of persons with YOD and their spousal caregivers participated in a 1 hour live video, joint interview during the early COVID-19 pandemic. We used a hybrid inductive-deductive coding approach to thematic analysis to extract findings within 2 a priori domains: (a) psychosocial stressors experienced during the early pandemic and (2) the impact of early pandemic stressors on couples' relationships and well-being.
Thematic analyses revealed 6 main themes: (a) increased caregiving responsibilities, (b) increased uncertainty, (c) increased social isolation and disruptions in social support and medical care, (d) loss of meaningful activities and routines, (e) changes to the couple's relationship, and (f) heightened emotional distress.
The COVID-19 pandemic exacerbated relationship strain and distress among couples managing YOD. This population may face negative outcomes due to the dual impact of YOD- and pandemic-related stressors. It is imperative to provide timely resources and psychosocial support to couples facing YOD to mitigate the negative impact of such stressors on individual health and well-being and the couples' relationship together.
2019 年冠状病毒病（COVID-19）大流行给社会带来了意想不到的压力，可能会对弱势群体造成更大的影响。一个这样的群体是患有早发性痴呆症（YOD）的夫妇，他们在经历大流行带来的压力的同时，还要应对与 YOD 相关的持续压力（例如，进行性症状、增加的护理需求）。本研究采用定性设计，旨在描述 COVID-19 大流行早期患有 YOD 的夫妇的经历，以及这些经历对夫妇“关系”和幸福感的影响。
在 COVID-19 大流行早期，我们对 YOD 患者及其配偶护理者（N=23）进行了 1 小时的现场视频联合访谈。我们使用一种混合的归纳演绎编码方法进行主题分析，以在两个预先确定的领域内提取发现：（a）大流行早期经历的心理社会压力源；（2）大流行早期压力源对夫妇关系和幸福感的影响。
主题分析揭示了 6 个主要主题：（a）增加的护理责任；（b）增加的不确定性；（c）增加的社会隔离和社会支持及医疗保健中断；（d）有意义的活动和日常生活的丧失；（e）夫妻关系的变化；（f）情绪困扰加剧。
COVID-19 大流行加剧了患有 YOD 的夫妇的关系紧张和困扰。由于 YOD 和大流行相关压力源的双重影响，这一人群可能会面临负面后果。及时为面临 YOD 的夫妇提供资源和心理社会支持至关重要，以减轻这些压力源对个人健康和幸福感以及夫妇关系的负面影响。
