Tang Xueting, Wang Junqiao, Wu Bei, Navarra Ann-Margaret, Cui Xiaoyan, Wang Jing
Fudan University, Shanghai, China.
Rory Meyers College of Nursing, New York University, New York, NY, USA.
Dementia (London). 2023 Nov;22(8):1776-1798. doi: 10.1177/14713012231193547. Epub 2023 Aug 30.
The self-identity of persons with young-onset dementia (YOD) is affected by the disease progression. However, the lived experience of maintaining self-identity along the disease trajectory is understudied. This meta-synthesis integrated qualitative data on the challenges, coping strategies, and needs of persons living with YOD and how their experiences affected their self-identity over time.
Four English (PubMed, Scopus, CINAHL, PsycINFO) and two Chinese (CNKI and Wanfang) electronic databases were searched for published literature peer-reviewed from the time of database inception to 2022. We used thematic analysis to extract and synthesize data from the literature concerning the long-term lived experiences of persons living with YOD.
A total of five peer-reviewed publications were eligible for inclusion in this meta-synthesis study. We identified four themes: (1) declining cognitive function and a prolonged diagnostic process threaten the self-identity of persons living with YOD, (2) struggling to accept the diagnosis of YOD and maintain self-identity, (3) maintaining self-identity and the normalcy of life through social support and person-centered care, and (4) living with YOD through self-development and self-identity reshaping at a later stage of the disease.
Persons living with YOD experience challenges maintaining their self-identity throughout the disease trajectory. These challenges are affected by their cognitive function, experiences of personal and social stigma associated with the disease, perceived social support, and person-centered care. Study findings have implications for developing tailored supportive programs for persons living with YOD at various stages of the disease trajectory.
早发性痴呆症（YOD）患者的自我认同会受到疾病进展的影响。然而，对于在疾病发展过程中维持自我认同的实际经历，目前研究较少。本元综合分析整合了关于YOD患者所面临的挑战、应对策略和需求，以及他们的经历如何随时间影响其自我认同的定性数据。
检索了四个英文电子数据库（PubMed、Scopus、CINAHL、PsycINFO）和两个中文电子数据库（中国知网和万方），以查找从数据库建立到2022年期间发表的经过同行评审的文献。我们采用主题分析法从文献中提取并综合有关YOD患者长期实际经历的数据。
共有五篇经过同行评审的出版物符合纳入本元综合分析研究的条件。我们确定了四个主题：（1）认知功能下降和漫长的诊断过程威胁着YOD患者的自我认同；（2）难以接受YOD的诊断并维持自我认同；（3）通过社会支持和以人为主的护理维持自我认同和生活的正常状态；（4）在疾病后期通过自我发展和自我认同重塑来应对YOD。
YOD患者在整个疾病发展过程中在维持自我认同方面面临挑战。这些挑战受到他们的认知功能、与疾病相关的个人和社会耻辱感经历、感知到的社会支持以及以人为主的护理的影响。研究结果对为处于疾病发展不同阶段的YOD患者制定量身定制的支持计划具有启示意义。
