Australia’s draft Dementia Action Plan

17 January 2023

Public consultation for the National Dementia Action Plan is currently open. Childhood Dementia Initiative is encouraging families impacted by childhood dementia, patient organisations, researchers and those who work with children with dementia to contribute to this consultation. Consultation is open until 31 January.

Despite the high burden of disease associated with childhood dementia, not one global policy, action plan or national strategy for dementia recognises children as a subset of the dementia population.

“Australia has a significant opportunity to be a world leader in this area and we were delighted to see the draft Action Plan did acknowledge children with dementia. In itself this is a great indicator of progress to advocate for the needs of children, however, acknowledgement is not enough. We need action,” says Meg Donnell, Childhood Dementia Initiative CEO.

What is the Action Plan and why does it matter?

The Action Plan is a core piece of policy framework described as "a 10 year plan to put people living with dementia, their families, and carers at the centre of all action on dementia." What this means is that it will guide action on dementia in Australia over the next 10 years across Australia’s federal, state and territory governments.

Childhood Dementia’s response to the draft Action Plan

Childhood Dementia Initiative’s full submission and a summary of that submission are available on our website. The key points raised in our response are:

  • The Action Plan needs to address the needs of all people with dementia regardless of age, this includes children. The draft Action Plan does not sufficiently recognise children, young people and their families.
  • Children should be identified as a priority population in the Action Plan to address the severely limited availability of appropriate support services for them.
  • The heightened and systemic discrimination of children with dementia must be addressed in the Action Plan. This systemic discrimination includes but is not limited to the majority of established dementia services not being available to children, and the exclusion from key datasets established to monitor people with dementia in Australia.
  • An analyse of the appropriateness and accessibility of services and programs for adults that could be extended to children, young people and their families should be included as a key activity for the first 3 years of the Action Plan.
  • Data collection, monitoring and the reporting and governance of the Action Plan all need to incorporate children with dementia.

What you can do

  • If you agree with the content of our response, you can send an email of support for the points outlined in Childhood Dementia Initiative’s response to 
  • Complete the online survey.
  • Call 1800 565 789 to provide feedback over the phone.
  • Make your own submission.

The consultation is open until 31 January.

If you have questions or would like support to contribute to the National Dementia Action Plan, we will do our best to help you: