Is your family impacted by childhood dementia? Connect with us here.

The many neurodegenerative disorders that cause childhood dementia are individually rare. Collectively, however, they affect around 700,000 children and young people worldwide. We're driving accelerated action for all of these disorders and referring to them under the umbrella term ‘childhood dementia’.

You can see a complete list of the disorders included under this term here.

“The Childhood Dementia Initiative is key to solving these problems because we need to come together in a concerted effort and tackle this head on. It’s unfathomable that our children are dying from these diseases with no cure.”

- Anna, mother of Sebby (pictured above)

Your experience and insights can create change

We understand that watching your child decline is acutely distressing and, too often, isolating. We’re here to shine a light on childhood dementia, to fast track treatments, and to find better ways to care for all children and young people living with dementia.

Your lived experience gives you a unique insight. To build greater understanding and awareness of childhood dementia and to educate health and policy decision makers, the voice of those impacted by childhood dementia needs to be heard. You can share your knowledge and amplify calls for change and action by joining the Childhood Dementia Advocates Program. You can participate as much as suits you, and in the ways that you want to, and you’ll be standing alongside families from across the world.

To become a family advocate, please tell us in the form below how to connect with you and we will be in contact. 


Researchers from the University of NSW and The Sydney Children’s Hospital Network (SCHN) are seeking parents or primary carers in Australia who are bereaved or who have a child living with a childhood dementia disorder. They are looking at the personal impacts on carers, including the psychological, financial and social impacts, to help identify family support needs.

This research is an important step towards improving care and support for families impacted by childhood dementia.

It has been made possible by Australia’s Department of Health and Aged Care in partnership with Childhood Dementia Initiative and demonstrates real interest from policymakers.

Participation involves completing a 10-minute survey. You can also take part in an additional Zoom interview with researchers to explore the issues in more detail.

Learn more here


Childhood Dementia Initiative and Ladybird Care Foundation have partnered to create the Ladybird Care Peer Mentor Program. The program enables connections and companionship between newly bereaved peers (Peer Mentees) and parents more than two years bereaved who have undertaken training to become Peer Mentors. Join us for an information session on 26 June 2024.

Learn more here

Services Directory for Australian families

Childhood Dementia Initiative maintains a services directory for families in Australia. It's designed to help parents and carers find and access support services. 

View the Services Directory

Did you know: You can now seek support for your child from Dementia Support Australia (DSA). DSA can help with behaviours and psychological symptoms your child is experiencing that impact their care or the way care is provided. To find out more, connect with the DSA support team here.

Become a family advocate

Fill in this form and we'll be in contact with you about opportunities to get involved. 

If you would like to talk to us to find out more about how you can be involved, please contact us at: