Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Harvard Medical School, Boston, Massachusetts, USA.
Gerontologist. 2022 Feb 9;62(2):262-275. doi: 10.1093/geront/gnab053.
Diagnoses of young-onset dementias (YODs) are devastating for persons with dementia and spousal caregivers yet limited work has examined both partners' perceptions of challenges and coping after diagnosis. This qualitative study investigated the psychosocial stressors and adaptive coping strategies in couples diagnosed with YOD to inform the development of psychosocial support resources.
We conducted live video dyadic interviews with couples (persons with YOD and spousal caregivers together; N = 23 couples). We transcribed interviews and coded data based on a hybrid deductive-inductive approach, with the structure of the coding framework informed by the stress and coping framework, and all codes derived from the data. We derived themes and subthemes related to psychosocial stressors and adaptive coping.
We identified 5 themes related to psychosocial stressors: the impact of diagnosis, social and family relationships, changing roles and responsibilities, planning for an uncertain future, and couple communication and relationship strain. We identified 7 themes related to adaptive coping strategies: processing emotions and cultivating acceptance, promoting normalcy, efforts to preserve persons with YOD's independence and identity, collaborative and open communication, social support, meaning-making, humor, and positivity, and lifestyle changes and self-care.
We replicated several themes regarding stressors and adaptive coping strategies from prior YOD research and identified novel themes and subthemes related to dyadic stressors, sources of couples' relationship strain, and the ways in which couples effectively cope with YOD. Findings inform the development of dyadic interventions to reduce YOD-related distress for both persons with dementia and spousal caregivers.
年轻发病型痴呆症（YOD）的诊断对患者及其配偶照顾者来说是毁灭性的，但很少有研究同时探讨诊断后夫妻双方对挑战的感知和应对方式。本质性研究旨在探究被诊断为 YOD 的夫妻所面临的心理社会压力源和适应性应对策略，以为心理社会支持资源的开发提供信息。
我们对 23 对夫妻（YOD 患者及其配偶照顾者）进行了现场视频对偶访谈。我们根据演绎-归纳混合方法对访谈内容进行了转录和编码，编码框架的结构受到压力和应对框架的启发，所有代码均来自数据。我们得出了与心理社会压力源和适应性应对策略相关的主题和子主题。
我们确定了与心理社会压力源相关的 5 个主题：诊断的影响、社会和家庭关系、角色和责任的变化、对不确定未来的规划以及夫妻沟通和关系紧张。我们确定了与适应性应对策略相关的 7 个主题：情绪处理和接受、促进正常化、努力维护 YOD 患者的独立性和身份、协作和开放沟通、社会支持、寻找意义、幽默和积极、生活方式的改变和自我保健。
我们复制了之前关于 YOD 研究的几个压力源和适应性应对策略主题，并确定了与夫妻关系紧张的双重压力源、夫妻关系紧张的来源以及夫妻有效应对 YOD 的方式相关的新主题和子主题。研究结果为开发针对 YOD 的双重干预措施以减少患者及其配偶照顾者的相关痛苦提供了信息。
