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)

We understand that watching your child decline is acutely distressing and, too often, isolating. As the only national organisation representing the needs of all families living with childhood dementia in Australia, 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.

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.

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.

If you are the parent or carer of a child with dementia, or a bereaved parent or carer, and would like to be kept up to date with our progress and what it means for you, we’d love to hear from you. Please tell us in the form below how to connect with you and we will be in contact. 

Please fill in the form below and we'll be in contact with you.

More Information: For more info on childhood dementia and our recommendations for change, check out our white paper, Childhood Dementia: the case for urgent action. If you would like to talk to us to find out more and how you can be involved, please contact us at: