Thursday 6 March 2025 In a significant milestone for childhood dementia care, Childhood Dementia Initiative has launched the world's first Community of Practice dedicated to supporting health and care professionals caring for children with dementia.

The free online program, the Childhood Dementia Community of Practice, which uses the globally recognised Project ECHO® model, connects a range of professionals with subject matter experts and peers to share knowledge and experience in caring for children with dementia.

“This is a transformative step in improving support and care for children with dementia," said Sue Coxon, Education Lead at Childhood Dementia Initiative. “By creating a collaborative space for healthcare professionals to learn and share expertise, we're building a foundation for better outcomes globally."

The inaugural session, held on 6 March 2025, focused on behavioural changes in children with dementia, featuring experts from Dementia Support Australia (DSA).

Healthcare professionals will meet online every two months, requiring just one hour of their time per session.

The initiative aims to develop a world-first knowledge bank while providing healthcare professionals with access to emerging evidence-based tools and resources. Topics for future sessions will be shaped by community members' suggestions and needs.

There are over 100 genetic disorders that cause progressive neurocognitive decline in children that come under the childhood dementia umbrella. Some of the better-known conditions include Sanfilippo syndrome, Rett syndrome, Niemann-Pick disease type A and C, Batten disease, juvenile Huntington's disease, adrenoleukodystrophy, metachromatic leukodystrophy, Hunter and Hurler syndromes and Tay-Sachs disease.

Healthcare professionals interested in joining the Community of Practice can register through the Childhood Dementia Initiative website. Sessions are open to all health professionals and service providers involved in caring for children with dementia disorders.

For more information about joining the Community of Practice, go to: https://www.childhooddementia.org/health-professionals/community-of-practice