Leading Action On
Childhood Dementia
Help transform research,
care and support for all
children with dementia
Report: State of Childhood Dementia in Australia 2024: READ NOW
Right now, thousands of children are suffering and dying slowly with dementia
and most people don’t know about it.
They will stop recognising their parents and those who love them most.
They will forget how to talk and walk.
They will die before they reach adulthood.
100+ disorders with no cure
There are over 100 genetic conditions that cause childhood dementia. They are all terminal. There are no cures.
1 in 2,900 babies
is born with a condition that causes childhood dementia. This is as common in Australia as well known disorders like cystic fibrosis.
50% die by age 10
Half of the children with dementia die by the age of 10. Most (71%) die before reaching their 18th birthdays.
Severely under-researched
Per patient, childhood dementia attracts 12 times fewer clinical trials than childhood cancer.
News
Leading world-first action for every child with dementia
Childhood Dementia Initiative is transforming research, care and policy responses for all children with dementia.
We bring the 100+ conditions that cause childhood dementia together under one umbrella. This new collective approach compels awareness and allows for greater efficiencies, scale and impact.
Standing with us is a powerful movement of families, researchers, health professionals, donors and people who care.
Childhood Dementia Initiative’s approach is to work collaboratively and not duplicate services. We drive changes to systems, policies and research to meet the needs of children with dementia and their families. We will take what we learn in Australia where we started, to empower change globally. Learn more about our approach.
“Families with kids with childhood dementia are facing a lot of similar challenges. I think the key thing for everybody is to realise these kids by themselves are almost forgotten. More awareness can make some really massive differences to the kids' lives and the consistency of support that they receive, and help them live their best lives.”
- John, dad to Eleanor (left) and Joshua (right) who both have childhood dementia
What's coming up
Webinar
Researchers share progress. Thurs 15 May.
Online education
Health & care professionals: learn together Thurs 1 May.
The Winter Gala
An unforgettable night of connection & meaning. Jun 2025.
Inca Trail Challenge
In support of kids with dementia. Oct 2025.
