Fudan University School of Nursing, Shanghai, China.
Institute of Neurology, Huashan Hospital, Fudan University, Shanghai, China.
J Alzheimers Dis. 2024;101(1):197-209. doi: 10.3233/JAD-240249.
Young-onset dementia (YOD) refers to dementia occurring before the age of 65, with Alzheimer's disease being the most common form, posing distinct challenges for spousal caregivers.
This study aims to investigate the unique experiences of spousal caregivers of persons with YOD in China, where dementia-specific community care services and primary healthcare professionals are relatively lacking, in order to inform the tailored support services development.
This qualitative-design study utilized semi-structured interviews with 11 spousal caregivers of persons with YOD dwelling in the community. Traditional content analysis was employed to analyze the interview data.
Limited dementia-specific healthcare professionals and low public awareness made diagnosing and accepting YOD a prolonged and challenging journey. Spousal caregivers faced skepticism when seeking diagnosis, exacerbating their burden and emotional stress. Disparities in healthcare professionals and insufficient collaboration between institutions worsened the situation. YOD significantly impacted family dynamics and led to changes in emotional communication within the family. The stigma surrounding YOD raised concerns among spousal caregivers about their children's future in marriage and career, emphasizing genetic risks.
In settings where dementia-specific community care services and primary healthcare professionals are limited and unevenly distributed, integrating support services at both the primary and community levels is crucial for families dealing with YOD in the community. Additionally, raising public awareness about YOD can foster a more understanding and supportive environment, addressing challenges related to stigma faced by affected families, contributing to increased investment in supporting resources, and encouraging individuals to seek help early on.
早发性痴呆（YOD）是指 65 岁以前发生的痴呆，其中阿尔茨海默病最为常见，这给配偶照顾者带来了独特的挑战。
本研究旨在探讨中国 YOD 患者配偶照顾者的独特体验，因为中国痴呆症特定的社区护理服务和初级保健专业人员相对缺乏，以便为定制支持服务的发展提供信息。
本研究采用半结构式访谈，对 11 名居住在社区的 YOD 患者配偶照顾者进行了定性设计研究。采用传统的内容分析法对访谈数据进行分析。
痴呆症特定的医疗保健专业人员有限，公众意识较低，使得诊断和接受 YOD 的过程变得漫长而具有挑战性。配偶照顾者在寻求诊断时面临怀疑，这加剧了他们的负担和情绪压力。医疗保健专业人员之间的差异以及机构之间缺乏协作，使情况恶化。YOD 对家庭动态产生了重大影响，导致家庭内部的情感沟通发生变化。YOD 带来的耻辱感使配偶照顾者对子女未来的婚姻和职业感到担忧，强调了遗传风险。
在痴呆症特定的社区护理服务和初级保健专业人员有限且分布不均的情况下，在初级和社区层面整合支持服务对于处理社区中 YOD 的家庭至关重要。此外，提高公众对 YOD 的认识可以营造一个更理解和支持的环境，解决受影响家庭面临的耻辱感相关挑战，有助于增加对支持资源的投资，并鼓励个人尽早寻求帮助。
