Released in December 2024, the Action Plan is the policy framework that outlines focus areas for the next 10 years. It aims to improve the lives and care of people living with dementia, their carers and families. The plan will be implemented by the federal, state and territory governments.

Childhood Dementia Initiative led advocacy efforts to ensure the inclusion of children with dementia in the plan.

“This is a critically important Action Plan for the entire dementia community. Our goal was to ensure that children with dementia were meaningfully included,” said Megan Maack, CEO and Founder of Childhood Dementia Initiative.

The Action Plan acknowledges that children living with dementia face significant challenges accessing dementia care and support services.

“Research and consultations consistently reveal the devastating realities facing children with dementia and their families. We find that once decision-makers are aware of these challenges, they simply can’t ignore them,” added Maack.

A report launched at Australia’s Parliament House in September, State of Childhood Dementia In Australia 2024, revealed that children with dementia carry arguably the highest level of unmet need in the Australian paediatric health system.

“Australia is the first country to recognise and respond to this problem in a coordinated way. We have the potential to lead the world in progress for children with dementia,” said Maack.

Childhood Dementia Initiative is calling for meaningful action following this milestone step and the urgent prioritisation of children with dementia.