For health and care professionals

For health and care professionals

Understanding childhood dementia

Families' lived experience 

Working with families

Thank you for your care and interest in childhood dementia. Children, young people and families will benefit from your awareness and understanding.

Here, you can access information on childhood dementia and its impacts on children and families. You’ll also find resources to support you when working with children with dementia and their families. 

Together with you, we can improve the quality of life for children with dementia. 

Stay up to date and connected

Connect with a growing community that’s learning more and contributing to solutions. Tell us where to reach you.


On this page:

Childhood dementia: it's time for a new approach

Compared to adult-onset dementia, childhood dementia has received little recognition. This is because, until now, each of the genetic conditions causing childhood dementia have been considered and viewed individually, rather than as a broader group as the adult dementias are. This siloed approach has resulted in a lack of appropriate care and support for children and their families, insufficient research and inadequate inclusion in health policies worldwide.

Collectively addressing childhood dementia gives greater visibility of this cohort’s unique needs, and opportunities to improve support services and research.

Childhood Dementia Initiative drives systemic change by collaborating with and supporting people who work with children and families, and by putting consumer insights and evidence at the centre of improvements to care and policy.

“I think the key thing for everybody is to realise these kids by themselves are almost forgotten. More awareness can make some really massive differences to the kids' lives and the consistency of support that they receive, and help them live their best lives.”

John, dad to Eleanor and Joshua

Understanding childhood dementia

Childhood dementia is caused by a devastating group of 100+ genetic disorders that cause progressive brain damage.

Dementia describes the set of symptoms experienced when the brain becomes more and more damaged. These symptoms can be experienced by both children and adults. Sadly, most children with dementia do not live to adulthood. 

Learn more

Families' experiences & the impacts of childhood dementia

Childhood dementia is a chronic, progressive, life-limiting condition. This means that care needs continually increase until a child dies. Families face a unique set of challenges:

  • All will become bereaved families.
  • They are managing complex physical challenges and dementia symptoms.
  • The lack of knowledge, data or research on childhood dementia creates additional burden, isolation and difficulty accessing care.

Emerging evidence shows that the specific psychosocial needs of children with dementia and their families are currently not being met.

Latest news

Researchers seek parents & carers of children with dementia 

Research is underway on the impacts of childhood dementia on parents and primary carers. Bereaved carers and those who have a child living with a childhood dementia disorder are invited to participate in a short survey. Learn more

Report and webinar on family experiences: ‘We don't fit'

Report reveals significant challenges faced by families accessing care and support in Australia. We've unpacked the report in a recent webinar. Learn more.

New research on psychosocial impact of childhood dementia

A systematic review has found parents' psychosocial challenges were manifold.  Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child’s condition trajectory. Learn more.

New research: The extent of childhood dementia

Published in Brain, new research defines the causes, prevalence, mortality & more. Learn more.

Research impacts of childhood dementia on carers

Research recruitment

Can you help connect primary carers (including bereaved) to this important research? 

Working with children and families

Hear from families and peers on supporting children and families. We’ve collected insights and advice from a range of professionals and families to help you when working with children with dementia.

“Realise that these children are often at the very extreme end of what you might treat or see on a day-to-day basis.”

Join the conversation that's creating change

Join the growing community of health, social care and education professionals who are learning more and contributing to solutions. We will keep you up to date on:

  • Emerging research and insights
  • The Community of Practice and how you can take part
  • Information resources for professionals working with children and families
  • Webinars, information sessions and in-service opportunities

Please keep me up to date on new resources and developments

Organising an in-service
Joining the Community of Practice