Childhood dementia encompasses over 100 rare genetic conditions causing progressive cognitive decline, with neuronal ceroid lipofuscinoses representing some of the more common causes. This comprehensive research program examined family experiences and healthcare professional perspectives across three sequential studies to inform systemic improvements for children and families impacted by childhood dementia.
The research commenced with the "We Don't Fit" study, where Nous Group conducted semi-structured interviews with eight parents (5 caring, 3 bereaved), revealing that families felt excluded from current care and support structures. Building on these insights, HealthConsult engaged over 110 healthcare professionals across Australia through virtual interviews, focus groups, and surveys, identifying ten key areas where needs were not being met through thematic analysis. The final "What Matters Most" study validated and extended these findings through nine focus groups with seventeen parents.
Integration of findings across all three studies revealed consistent challenges: fragmented and difficult to access care and support systems, lack of healthcare professional awareness and training, lack of access to experimental and emerging therapies, and families becoming "project managers" for their child's complex needs. Most significantly, the research identified five evidence-based priority actions derived from lived experience:
These priorities directly address the complex needs of families, who face unique challenges navigating devastating progressive conditions requiring sustained, coordinated care over extended periods. This research provides a foundation for developing nationally coordinated frameworks that integrate both clinical expertise and lived experience to ensure appropriate, equitable, and high-quality care for all families affected by childhood dementia.