Integrated Brain Health Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston.
Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston.
JAMA Netw Open. 2021 Apr 1;4(4):e216111. doi: 10.1001/jamanetworkopen.2021.6111.
A diagnosis of young-onset dementia (YOD) is a life-altering event for both persons with dementia and their spousal caregivers. Dyadic coping (DC) theoretical models acknowledge that dyads cope with stressors as a unit, but these models have yet to be used in YOD.
To explore the lived experiences of couples managing YOD using an integrated DC model.
DESIGN, SETTING, AND PARTICIPANTS: This qualitative study recruited couples from a single major medical setting and through social media. Eligibility criteria included cohabitation, 1 partner diagnosed with YOD and able to participate, and both partners willing to participate. Live online video interviews were conducted from March to June 2020.
One semistructured interview, which was recorded and subsequently transcribed. Recruitment was stopped once thematic saturation was reached.
Five themes were deductively derived based on the integrated DC framework, including stress communication, positive individual DC, positive conjoint DC, negative individual DC, and negative conjoint DC. Within each theme, subthemes were inductively identified to further characterize couples' dyadic coping experiences with YOD.
A total of 23 couples were interviewed, comprising persons with dementia (11 women [48%]; mean [SD] age, 61.3 [4.65] years; mean [SD] time from diagnosis, 3.11 [3.85]) years; and spousal caregivers (13 women [57%]; mean [SD] age, 60.5 [5.40] years). Data supported the 5 a priori DC themes and novel subthemes describing couples' experiences with YOD. Specifically, couples enacted positive conjoint DC by approaching challenges using a teamwork approach to problem solving and relying on collaborative communication. In contrast, couples engaged in negative conjoint DC through mutual avoidance, leading to increased negative communication and conflict. Couples described initially engaging in avoidance and withdrawal to navigate YOD-related stressors. While these strategies provided short-term relief from challenging emotions, they prevented engagement in adaptive coping (eg, acceptance and collaborative problem-solving) to promote long-term adjustment.
This study used an evidence-based integrated DC approach to identify the positive and negative coping behaviors of couples managing YOD. To our knowledge, this is the first study to use a DC framework to guide qualitative analysis, and it provides valuable insights into DC strategies used by couples navigating YOD-related stressors. Findings can inform the development of dyadic psychosocial services for couples managing YOD and have implications for other progressive illnesses.
对于痴呆症患者及其配偶照顾者来说，年轻发病型痴呆症 (YOD) 的诊断都是改变生活的事件。双元应对 (DC) 理论模型承认，双元作为一个单位应对压力源，但这些模型尚未在 YOD 中使用。
使用综合 DC 模型探讨夫妻共同管理 YOD 的生活经历。
设计、设置和参与者：这项定性研究从一个主要的医疗场所和社交媒体招募了夫妻。入选标准包括同居、1 名伴侣被诊断为 YOD 并能够参与，以及双方都愿意参与。从 2020 年 3 月至 6 月，进行了在线视频现场访谈。
一次半结构化访谈，记录并随后转录。一旦达到主题饱和，就停止招募。
根据综合 DC 框架，得出了五个主题，包括压力沟通、积极的个体 DC、积极的联合 DC、消极的个体 DC 和消极的联合 DC。在每个主题中，都确定了归纳性的子主题，以进一步描述夫妻应对 YOD 的二元应对体验。
共有 23 对夫妻接受了采访，包括痴呆症患者（11 名女性 [48%]；平均 [标准差] 年龄，61.3 [4.65] 岁；平均 [标准差] 诊断后时间，3.11 [3.85] 年）和配偶照顾者（13 名女性 [57%]；平均 [标准差] 年龄，60.5 [5.40] 岁）。数据支持了 5 个先验的 DC 主题和描述夫妻 YOD 经历的新主题。具体来说，夫妻通过采用团队合作的方法解决问题来应对挑战，从而实施积极的联合 DC，并依靠协作沟通。相比之下，夫妻通过相互回避来进行消极的联合 DC，从而导致沟通和冲突增加。夫妻描述了最初采用回避和退缩的方式来应对 YOD 相关的压力源。虽然这些策略为应对具有挑战性的情绪提供了短期缓解，但它们阻止了夫妻参与适应性应对（例如，接受和协作解决问题），以促进长期调整。
这项研究使用基于证据的综合 DC 方法来确定夫妻管理 YOD 的积极和消极应对行为。据我们所知，这是首次使用 DC 框架指导定性分析的研究，它为夫妻应对 YOD 相关压力源时使用的 DC 策略提供了有价值的见解。研究结果可以为夫妻管理 YOD 提供双元心理社会服务，并对其他进行性疾病产生影响。
