CANBERRA, Australia, Sept. 9 2024 /PRNewswire/ — A groundbreaking new report, “State of Childhood Dementia in Australia 2024,” released today at Australia’s Parliament House in Canberra by the Childhood Dementia Initiative, has revealed the devastating impact of childhood dementia on Australian families. Childhood Dementia Initiative calls for urgent action to address systemic barriers to cures, treatments, and adequate healthcare and support.
Left to right, is Sam (dad to Caleb who died with childhood dementia), Nicole (mum to Toby who has childhood dementia), Peta (mum to Mia who died with childhood dementia), Gail (Head of Programs at Childhood Dementia Initiative), Mark Butler MP, Minister for Health and Aged Care, Megan (CEO, Childhood Dementia Initiative) and Brett and Sarah (dad and mum to Charlotte who has childhood dementia).
Assistant Health Minister, Ged Kearney, and MP, Gavin Pearce, spoke at Parliament House in Canberra, Australia, to address the findings of the report. The report highlights:
- Research is hindered by lack of funding, infrastructure and clinical trial capacity. Fewer than 2% of children with dementia in Australia can join a potentially life-saving clinical trial.
- Families struggle to get the healthcare and support their children need. This causes tremendous strain, delayed diagnoses and requires parents to fight for services while also managing the complex care of their terminally ill children.
Childhood Dementia Initiative is urging a coordinated national approach to save lives and improve the quality of life for these vulnerable children.
“This is a crisis in unmet need in our own backyard,” said Megan Maack, CEO of Childhood Dementia Initiative. “We are facing a situation where children are dying without receiving the necessary healthcare and support—a shocking reality in Australia in 2024.”
In Australia, a baby is born with a childhood dementia disorder every few days—a devastating condition that has seen no improvement in survival rates. Unlike other childhood diseases, the prognosis for children with childhood dementia is dire: 50% die before the age of 10, and 70% before reaching adulthood. All will die prematurely.
“Survival rates for children with cancer have risen to 84% and there is concerted action to achieve 100%. Childhood dementia, in comparison, sits at 0% survival and children are suffering and dying. There’s a strong moral imperative here for immediate action,” says neuroscientist Professor Peter Schofield AO.
For further information visit www.childhooddementia.org
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