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

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