Report Urges Federal Funding for National Childhood Dementia Unit that Will Save Australia $61.5m and Help Thousands of Dying Children
A child dies from dementia every 4 days in Australia — yet there’s no nationally coordinated approach to care for them
SYDNEY, Australia – A comprehensive new report released today by the Childhood Dementia Initiative reveals that a proposed National Childhood Dementia Unit (NCDU) would not only transform care for Australia's most vulnerable children but deliver exceptional economic returns, saving the nation $61.5 million over five years from a $12.6 million investment.
Currently, a child in Australia dies from dementia every four days, yet there is no national approach to care for them. The report, ‘From Crisis to Hope: The National Childhood Dementia Unit,’ summarises a full business case for Australia's first coordinated approach to childhood dementia which is caused by more than 100 genetic conditions affecting 1 in every 2,900 babies born.
Childhood dementia currently costs families and the health system millions of dollars in reactive, crisis-driven care. The NCDU, a virtual network of experts, tools and resources dedicated to improving survivorship and symptom management for children with dementia, would reverse this, shifting the system from fragmented and inadequate responses to proactive, expert-led care that reduces hospitalisations, eases pressure on health services, and delivers better outcomes for children and families.
“This isn't a funding plea — it's an investment opportunity," said Megan Maack, CEO and Founder of Childhood Dementia Initiative. “For every dollar spent on the National Childhood Dementia Unit, Australia will see nearly five dollars in return. More importantly, it will give children with dementia a fighting chance."
Children with dementia progressively lose skills such as walking, talking, and recognising loved ones. Many experience seizures, feeding difficulties, loss of mobility and chronic pain before facing premature death — with half dying before their 10th birthday. “There is an urgent need for coordinated national action. Families are left to watch their children deteriorate without critical healthcare and support they need. We're in a situation where the level of care a child gets, depends on their postcode and how well their family can fight," said Maack
Key Findings:
The key problems children and families face:
- Diagnostic delays and lack of expertise
- Fragmented, reactive care without standardised pathways
- Limited access to emerging therapies and clinical trials
- Children unidentifiable in health system data
- Families bearing an impossible burden
The NCDU will deliver a 4.9:1 return on investment. A $12.64 million investment would deliver $61.49 million in benefits:
- $10.87 million in health system savings through reduced emergency visits and hospitalisations
- $50.62 million in family support through reduced caregiver anxiety and time savings
“It's time to recognise childhood dementia as a systemic healthcare crisis that demands action. We have an opportunity to position Australia as a global leader in childhood dementia innovation and finally give our most vulnerable children a fighting chance," said Maack.
The report, developed with funding from the Federal Department of Health, Disability and Ageing, involved over 60 stakeholders including families and health professionals. Australia is the first country to recognise children in dementia policy, including them in the National Dementia Action Plan released in 2024.
About Childhood Dementia Initiative: Leading global efforts to improve outcomes for children with dementia through awareness, research, and systemic healthcare reform since 2020.
