Bøtchiær Mille Vogelius, Kristensen Hanne Kaae
University of Southern Denmark, Odense, Denmark.
Health Sciences Research Centre, UCL University College, London, UK.
Scand J Caring Sci. 2025 Sep;39(3):e70089. doi: 10.1111/scs.70089.
Caregivers often lack access to comprehensive information on young-onset dementia (YOD), leaving them unprepared for their caregiving roles. Especially, spousal caregivers of people with (YOD) face challenges, balancing caregiving with work and personal responsibilities in everyday life. However, their specific needs remain underexplored.
This scoping review aimed to identify and map the lived experiences and unmet needs of spousal caregivers of persons with YOD.
A systematic literature search was conducted across several databases (Embase, Scopus, Academic Search Premier, APA PsycInfo, CINAHL Ultimate, and PubMed via EBSCOhost), including MEDLINE to identify studies on spousal caregivers of people with YOD. Articles were screened and selected based on inclusion criteria, and key data were extracted and categorised into themes that captured the lived experiences and unmet needs of this caregiver population.
The review identified five overarching themes related to the needs of spousal caregivers of people with YOD: psychoeducational, social support, practical support, emotional and psychological support, and navigational support needs. Caregivers often lack access to comprehensive information on YOD, leaving them unprepared for their caregiving roles. Social isolation, financial burdens, and role conflicts were common experiences. Emotional distress, identity loss, and lack of recognition for caregiving efforts contributed to psychological strain. Moreover, caregivers encountered significant challenges in accessing and coordinating healthcare services, often having to advocate for appropriate support. The need for tailored services, respite care, financial and legal guidance, and professional counselling was strongly emphasised.
This scoping review identified a wide range of unmet needs among spousal caregivers of persons with YOD, underscoring the need for psychoeducational, social, practical, emotional, and navigational support. The findings revealed gaps in current support systems across personal, social, and systemic levels, emphasising the complex and disruptive nature of the caregiving experience. Future interventions should prioritise accessible, comprehensive, and tailored support services to effectively address these unique caregiving challenges.
照顾者往往无法获取关于早发性痴呆（YOD）的全面信息，这使他们对自己的照顾角色毫无准备。尤其是，早发性痴呆患者的配偶照顾者面临挑战，要在日常生活中将照顾与工作及个人责任相平衡。然而，他们的具体需求仍未得到充分探索。
本范围综述旨在识别并梳理早发性痴呆患者配偶照顾者的生活经历和未满足的需求。
通过多个数据库（Embase、Scopus、学术搜索大全、美国心理学会心理学文摘数据库、护理学与健康领域数据库、通过EBSCOhost检索的PubMed）进行系统的文献检索，包括MEDLINE，以识别关于早发性痴呆患者配偶照顾者的研究。根据纳入标准对文章进行筛选和选择，并提取关键数据，将其归类为反映该照顾者群体生活经历和未满足需求的主题。
该综述确定了与早发性痴呆患者配偶照顾者需求相关的五个总体主题：心理教育、社会支持、实际支持、情感和心理支持以及导航支持需求。照顾者往往无法获取关于早发性痴呆的全面信息，这使他们对自己的照顾角色毫无准备。社会孤立、经济负担和角色冲突是常见经历。情感困扰、身份丧失以及照顾努力未得到认可导致心理压力。此外，照顾者在获取和协调医疗服务方面遇到重大挑战，往往不得不争取适当的支持。强烈强调需要量身定制的服务、喘息护理、财务和法律指导以及专业咨询。
本范围综述确定了早发性痴呆患者配偶照顾者中广泛存在的未满足需求，强调了心理教育、社会、实际、情感和导航支持的必要性。研究结果揭示了当前个人、社会和系统层面支持体系中的差距，凸显了照顾经历的复杂性和破坏性。未来的干预措施应优先提供可获取、全面且量身定制的支持服务，以有效应对这些独特的照顾挑战。
