Supportive care needs of individuals with young-onset dementia: A systematic review and qualitative meta-synthesis

BackgroundYoung-onset dementia (YOD) presents distinct health and care needs due to its earlier onset compared to late-onset dementia (LOD). Understanding these challenges is crucial for developing tailored interventions.ObjectiveThis systematic review describes and analyzes the supportive care needs of individuals with YOD and identifies key areas for further research.MethodsA qualitative systematic review was conducted following PRISMA guidelines, with comprehensive searches of databases, including PubMed, Embase, and Web of Science, etc. Screening and data extraction were performed, followed by a "Best-fit" framework synthesis. Study quality was appraised using the JBI Critical Appraisal Tool, and confidence in the findings was assessed using the ConQual approach.ResultsSeventeen articles yielded 42 findings categorized into 17 groups and synthesized into three themes: (1) needs for empowerment through knowledge, planning, and meaningful engagement, (2) needs for promoting physical health, mental support, and social engagement, and (3) needs for a comprehensive support network. Theme 1 encompassed six sub-themes: accurate and timely diagnosis, pre-determined care plan, desire for disease-related knowledge, autonomy in decision-making and dignity preservation, future planning, and a sense of self-worth. Theme 2 involved physical activity, symptom management, psychotherapy, social and recreational activities, employment, and public awareness. Theme 3 comprised financial and family responsibilities, caregiver support, professional support, information support, and caregiving institutions.ConclusionsIndividuals with YOD remain an under-researched group with unique needs. This review highlights their specific needs and experiences, emphasizes the importance of tailored support, and informs the development of targeted future interventions.Registration numberCRD42024514037.