Our vision

Sustainable global health solutions for childhood dementia.

The outcomes we're here to make happen

Treatments and cures available for children with dementia.

Access to equitable and quality care for children with dementia and their families.

Childhood dementia is a global health priority.

The transformative shift we lead

We bring all of the conditions that cause childhood dementia together under one umbrella.

Driving the collective consideration of the 100+ childhood dementia disorders in a world-first approach with potential to transform the lives of children with dementia and their families for generations.

We do things differently

We’re the organisation that’s leading change for kids with dementia. Standing with us is a movement of families, researchers, health professionals, donors and concerned people.

Our approach is to not duplicate services. We drive changes to systems and policies to meet the needs of children with dementia and their families; and we’re generating an extraordinary wave of innovative research. We will take what we learn in Australia where we started, to empower change globally. Learn more about our role and values.

Childhood Dementia Initiative: An overview

Childhood Dementia Initiative's CEO, Megan Maack, gives an overview of the organisation. Megan founded Childhood Dementia Initiative in 2020 to lead world-first action and awareness for all children with dementia.

Our focus

We work across 3 program areas to get kids with dementia the treatments, support and inclusion they urgently need. Progress in all of these areas is necessary to ensure:

  • Treatments and cures are available for children with dementia
  • Families have access to equitable & quality care
  • Childhood dementia is a health policy priority

Each area relies on and supports the others. For instance, more research funding and activity are needed. However, awareness, policy change and the inclusion of families’ needs are critical to enable research.

Even if research activity increases, children need earlier diagnoses in order to benefit from emerging treatments. They also need effective care systems to test and implement research breakthroughs.

Improvements to care and support need to be informed by lived experiences of families, the latest research, and the capability and expertise of the health and social care systems.

Our role

Childhood Dementia Initiative is transforming the response to childhood dementia. We drive change within systems responsible for the treatment and care of children. By ‘systems’ we mean systems such as the health system, disability support, or even the way in which things are done. For instance research that has been traditionally inefficient, under-funded and prevents the sharing of expensive resources, sits within systems that can improve. We:

  • Build evidence that is validated by families, experts in the field and empirical data. See the latest studies, findings and submissions here.
  • Build networks. We bring cross-disciplinary experts together to enable change. This includes families, researchers, health professionals and service providers, and policymakers.
  • Enable partnerships, collaborations and co-design. 'Co-design' means creating improvements in collaboration with stakeholders. This ensures sustainable, effective solutions are implemented.
  • Advocate for enablers. This includes investment, policy and practice changes, as well as greater awareness. Already shifts in funding, policy and awareness are having an impact. 

Our values

  • We are BOLD in all we do and seek to achieve.
  • We AMPLIFY the voices of our families and the case for change.
  • We are TRANSPARENT in all aspects of our work.
  • We UNITE, bringing together those who can make the changes needed.

“We are stronger when we're united and can stand alongside all kids with childhood dementia.” Kathryn, mum to Eleanor (pictured) and Joshua who both have childhood dementia

Our progress


A new wave of research is underway


Finally, the voices of families are being heard


Policymakers are starting to listen & respond


Childhood Dementia Initiative’s CEO, Megan Maack, has shared in this video some of the enormous strides made for children with dementia in 2023. She covers the organisation’s 3 strategic focus areas: research, care and advocacy.