New online community connects families facing childhood dementia

July 2025 Childhood Dementia Initiative has launched a groundbreaking online community, offering families connection and support.

Co-designed with parents over months of careful consultation, the Childhood Dementia Online Community, is a private Facebook community addresses the profound isolation reported by families impacted by childhood dementia. Parent consultations revealed that parents needed a space that was both safe and supportive, where they could share practical knowledge and emotional experiences without judgment.

“Wow, I'm not alone," one parent shared during the design process. “There's actually a lot of us, you know, and feeling like that sense of belonging... when you've got those families together, together we can really do things."

Parents emphasised the importance of sharing both challenges and celebrations, creating a culture of hope alongside acknowledgment of difficulties.

Currently serving Australian families, the community will expand globally in late 2025, bringing this vital support network to families worldwide who face the devastating impact of childhood dementia.

Parents can register to join the community here: