Abstract:

Objective This study is to explore the dyadic experiences of patients with young-onset dementia （YOD） and their primary caregivers. We aim to explore their interactions,challenges,and needs in order to provide empirical evidence for the development of precision intervention and supportive system for this population. Methods We purposively selected 12 dyads of persons with YOD and their primary caregivers and conducted in-depth semi-structured interviews with the dyads during the period between Jan to June 2021. We adopted conventional content analysis and dyadic qualitative analysis approach to analyze and synthesize the data. Results 4 major themes emerged as multiple challenges（daily life experiences,social interaction changes,a lack of social awareness of the disease,and role maladaptation）,stigma（self-conflict,personhood,a lack of sense of security,and perceptions of stigma in the socio-cultural context）,a lack of supportive resource and social vulnerability （the lack of knowledge of the disease,the lack of formal care provision,the lack of appropriate social support）,and available individual and social coping strategies（person-centered care,stress relief,and decreased social discrimination on YOD）. Conclusion The dyadic experiences of persons with YOD and their caregivers are unique and variant. There is an urgent need for family,community,health care system and the public to stay connected and provide substantial support for this population. Researchers need to actively conduct multi-disciplinary research to understand the needs and challenges of this population to develop tailored interventions to improve their experiences,quality of life and assist them move through to the later stage of their life.

Key words: Young-Onset Dementia, Early-Onset Dementia, Caregiver, Qualitative Study, Dyadic Experiences, Nursing Care

摘要：

目的 探究年轻型痴呆症（又称早发型痴呆症）患者及其照护者互动与疾病体验,为制订针对该群体的精准干预和支持策略提供证据支持。 方法 采用目的抽样法,于2021年1月—6月选取12对年轻型痴呆症患者及其照护者进行面对面半结构式深入访谈,结合配对访谈分析法和经典内容分析法,对访谈资料进行分析和归纳。 结果 年轻型痴呆症患者及其照护者疾病体验可以归纳为年轻型痴呆症患者和照护者的困境（家庭生活质量受到负面影响、社会活动减少和方式改变、社会对疾病认知不足）、病耻感（否认疾病、渴望尊重、安全感弱、特定社会文化背景下的病耻感）、资源支持匮乏（获取疾病知识及支持途径缺失、专业照护服务紧缺、社会服务和政策不适配）以及个人积极应对策略（以人为中心的照护、照护者的解压方法、主动寻求帮助）共4个主题。 结论 年轻型痴呆症患者及其照护者的疾病体验具有特异性和多样化属性。家庭、社区、医院和社会应充分联动,为这一群体提供支持。研究者应该积极开展跨学科研究,深入了解患者及其照护者面对的挑战与需求,针对性提升其疾病体验,改善其生活质量,帮助其更好地过渡到疾病老年期阶段。

关键词: 年轻型痴呆症, 早发型痴呆症, 照护者, 质性研究, 互动体验, 护理