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Background: 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., Objective: 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., Methods: 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., Results: 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., Conclusions: 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.

Background: Dementia occurring before age 65 is known as young-onset dementia (YOD), with Alzheimer's disease being the most common type. YOD poses unique challenges for persons and families, impacting their working-age years and family responsibilities. Person-centered interventions and services are essential to improve their quality of life and social engagement., Objective: This study aims to synthesize non-pharmacological interventions for persons with YOD and their families to inform future targeted interventions., Methods: We conducted a systematic literature search across four databases: PubMed, PsycINFO, Scopus, and CINAHL. The included articles were carefully screened, categorized, and synthesized by following Arksey and O'Malley's five stages framework., Results: We included 20 studies reported in 24 papers, with 11 studies (14 papers) on persons with YOD and nine studies (10 papers) on families. Quantitative intervention results vary, but qualitative interviews show positive feedback. Stakeholders provided positive evaluations, stating these interventions provided a sense of normalcy, facilitated communication among families, enhanced the independence of persons with YOD, and improved the families' caregiving self-efficacy, thereby reducing care burden and psychological distress. The heterogeneity among the studies posed integration challenges., Conclusions: Interventions for YOD can improve the quality of life for both persons with YOD and their families. More extensive intervention studies are urgently needed, especially in developing countries, with a focus on family-centered and life course perspectives. In future intervention research design, a more extensive incorporation of stakeholder involvement is essential for successful implementation. Moreover, the integration of new technologies shows promise as a potential avenue for intervention advancement.

Background: 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., Methods: 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., Results: 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., Conclusions: 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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Although China has the largest population of persons with dementia, there is no validated tool available to accurately assess formal caregivers' competence in dementia care in long-term care settings. Appropriately assessing nursing staff's level of competence in dementia care is the first step to develop precision training interventions to improve the quality of dementia care. The Sense of Competence in Dementia Care Staff scale (SCIDS) is a user-friendly tool with satisfactory reliability and validity. We adapted SCIDS into a Chinese version (SCIDS-C) and validated its uses in China's socio-cultural context to assess nursing staff's capability and competence in dementia care at nursing homes., Aims: We aimed to adapt and psychometrically test the tool among frontline nursing staff in long-term care settings in China., Methods: The research employed a correlational design with repeated measures. In translation section, we adapted and tailored the original scale in the cultural and social context in China's nursing homes. The scale's adaptation consists of translating adaptation and semantic equivalence. In psychometric testing phase, we tested the validity and reliability of the scale with 174 nursing staff conveniently from six nursing homes. Construct validity was tested using exploratory factor analysis (EFA), including principal component analysis and maximum variance rotation method. Reliability was tested using Cronbach's alpha value and intraclass correlation coefficient (ICC)., Results: The SCIDS-C has 17 items, which belong to the two sub-scales, the Relationship-Centered Care(RCC) and Professional Care(PC). The Cronbach's alpha value was 0.88, showing a good internal consistency. The full scale's value of ICC was 0.94 which indicated good reliability. Exploratory factor analysis(EFA) extracted 2 common factors in each sub-scale, cumulative variance contribution rate was 56.71% and 53.92%, respectively. The named four factors are the same as the Sense of Competence in Dementia Care Staff (SCIDS) scale in English, including Building Relationships, Sustaining Personhood, Professionalism and Care Challenges., Conclusion: The SCIDS-C has shown good reliability and validity. It can be used as an appropriate tool to evaluate the competence of nursing care staff to provide dementia care for residents in nursing homes., (© 2023. The Author(s).)

Semi-skilled or unskilled nursing care aides primarily provide direct care to residents in long-term care (LTC) facilities in China and many other countries around the world. There has been a significantly increased commitment from nurses and other formally trained professionals to provide person-centered care (PCC) for people with dementia (PwD). However, it is still unclear how nursing care aides who provide direct care to older residents with dementia understand and adopt PCC in their daily work. It is of utmost importance to understand person-centered dementia care from the perspectives of care aides, and to identify implications to facilitate and sustain their efforts in providing quality care for older residents with dementia. We found that the seemingly beneficial mental models used by care aides in their work can hinder them from playing a more adaptive role in tailoring their care to the needs of older residents. Infantilizing older residents with dementia and labeling them using mother wit can prevent meaningful, equal, and person-centered conversations between both parties. Care aides do not have regular formal interactions and sensemaking with nurses and other professionals in nursing homes. Increasing interactions and communication between care aides and health care professionals in nursing homes can lead to insight for changing the approach to in-service training to achieve better acceptance by care aides. The current study derives implications for operationalizing and embedding the principles of PCC in daily care., Competing Interests: Conflicts of interest On behalf of all the authors, there are no financial or personal relationships that could cause a conflict of interest regarding this article., (Copyright © 2022 Elsevier Inc. All rights reserved.)