Background: In Australia a baby is born every three days facing premature death from conditions that cause childhood dementia. Despite comparable mortality to childhood cancer (91 vs. 92 annual deaths), childhood dementia receives significantly less research funding and lacks coordinated care approaches. This planned study will investigate international best practices in comprehensive care models for childhood dementia to address the fragmented, siloed service delivery currently experienced by Australian families.
Methods: A Churchill Fellowship-funded investigation will be conducted across specialised centres in Norway, United Kingdom, Brazil, and United States between June and August 2025. The investigation will gather insights through site observations, semi-structured interviews with multidisciplinary professionals, and family consultations. Key domains to be examined include: care integration across health/disability/education sectors, professional education approaches, family support mechanisms, palliative care integration, and service access pathways.
Results: This presentation will share the findings from this international investigation, including identified elements critical to comprehensive care for children with dementia. Analysis will focus on transferable practices that could enhance the Australian care landscape, with particular attention to coordination models, knowledge dissemination approaches, family support mechanisms, palliative care integration, and service accessibility.
Conclusions: The presentation will outline how insights from international models might be applied to the Australian context through the development of a National Framework for Care for Childhood Dementia. Recommendations will address how Australia's existing health infrastructure could be leveraged while addressing current workforce capacity constraints. This research aims to provide an evidence base for establishing Australia's first coordinated national approach to childhood dementia care, with potential to significantly improve outcomes for affected children and their families.