9 September 2024: A groundbreaking new Australian report by leading non-profit Childhood Dementia Initiative, titled, ‘State of Childhood Dementia in Australia 2024’, has unveiled the devastating reality faced by Australia’s children with dementia and calls for urgent action to address systemic barriers to cures, treatments and adequate healthcare and support.

Launched at Australia’s Parliament House in Canberra, 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.

As the disease progresses, children lose abilities like speaking, walking, and even hearing or sight, often suffering from debilitating seizures. This relentless decline, marked by chronic pain and distress, makes childhood dementia uniquely cruel.

“In my practice, I see firsthand how childhood dementia is different from other chronic childhood diseases,” explained Professor Michelle Farrar, a child neurologist and clinical academic at UNSW Sydney.

“Childhood dementia is an ever-changing condition, with new and more severe symptoms constantly emerging on a scale much greater than any other condition," Professor Farrar added. "The connection with the healthcare system and support must be exceptionally strong and responsive in ways that aren't required for other conditions.”

“What's particularly concerning is that in the absence of consistent national standards in care and practice, the healthcare, disability and other supports that a child might get comes down to a 'postcode lottery' and a family's capacity to advocate for their child,” says Dr Nicholas Smith Neurologist at the Women’s and Children’s Health Network, South Australia.

Sydney mother Sarah Matthews can attest to this. Her daughter Charlotte, aged 3, has childhood dementia: “As a lawyer, I advocate for a living, but I feel I’ve never had to advocate as much as I’ve had to in order to get Charlotte diagnosed and to get her the support she needs.”

Some of the findings in the report come from Australian Government funded research into the needs and barriers to healthcare and support for children with dementia and their families in Australia. “This was an important first step and gives us more insights into a cohort that has been unseen and unheard for too long,” said Maack. “Australia is the first country to recognise and respond to this problem in a coordinated way. We have the potential to lead the world in progress for children with dementia,” said Maack.

STATISTICS 

• On average, diagnosis is delayed by 2 years or more after the onset of symptoms.
• Around one in every 2,900 babies are born with a condition that causes childhood dementia.
• 50% of children with dementia die by the age of 10; 70% of children with dementia will die before they turn 18.
• One in every 5 affected families have multiple children with dementia.
• Per patient, there were 43 times more clinical trials for childhood cancer than childhood dementia recruiting in Australia.
• Fewer than 2% of children with dementia in Australia can join a potentially life-saving clinical trial.
• Preliminary research data indicates:
  • Approximately one in 3 parents give up their careers to care full-time for their children.
  • Parents of children with dementia experience 2 to 3 times greater levels of moderate to severe anxiety than the general population experienced during COVID-19 lockdowns and psychological support for families is inadequate.
  • There is a high incidence of prolonged grief disorder among bereaved parents and high levels of pre-loss grief among non-bereaved families.