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Background: The Young Onset Dementia Asia Pacific Research Collaborative (YOD-APC) is a newly created multi-national research collaborative committed to improve outcomes for people with YOD and their families in the Asia-Pacific region. Methods: This paper describes the first two years’ progress of YOD-APC https://www.nzdementia.org/Tools-and-Guidance/Young-Onset-Dementia-Asia-Pacific-Research-Collaborative-YOD-APC, including an inaugural meeting in New Zealand in 2024, a scoping review to map the existing YOD literature from Asia-Pacific and provide an overview of the research topics conducted to date, and a new project to understand the different models of care across the Asia-Pacific region. Results: Founded by key YOD researchers in Australia and New Zealand, YOD-APC now involves members in China, Hong Kong SAR, India, Malaysia, Singapore, South Korea and Vietnam. Priorities have been driven by key aims such as connecting and collaborating across sectors and countries, sharing expertise, identifying key areas for improvement, and promoting the inclusion of lived experience and community expertise in research. The scoping review found 437 empirical studies, with Japan, Australia, South Korea and China contributing to 82% of YOD research. Published studies mostly focused on disease biology such as genetics and neuroimaging, and only 11% publishing on psychosocial impacts and support. The models of care project will describe the diagnostic journey, accessibility and availability of assessment tools and post-diagnostic support and barriers. Conclusions: The YOD-APC provides opportunities for researchers and people with lived experiences to better understand the journey of YOD in the Asia-Pacific region and to co-develop interventions and services that address the needs of those affected.
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