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:
- Understanding childhood dementia: information and resources to help you
- Families' lived experiences: the unique impacts of childhood dementia on children and families
- Latest news
- Working with children and their families: tools and resources to help you, including insights from peers and families
- Opportunity to stay connected, informed and to contribute to improved care for children and families
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.
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
Survey: We need your insights on care and support for children and families
We're seeking health and care professional’s insights via a 10-minute survey. Together with HealthConnect, we are undertaking a much-needed review of the current care and support landscape for children and families impacted by childhood dementia. Learn more and help with this important survey.
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 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.
- Hear families reflect on support for them and their children how they want professionals to work with them
- Hear from health professionals on a range of topics spanning diagnosis, care, the symptoms and impacts of childhood dementia, palliatiave and more.
“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
