Research published in international peer reviewed journal, Brain, The collective burden of childhood dementia: a scoping review gives global access to essential data on childhood dementia.  

The world-first collaborative study, defines the genetic disorders that cause childhood dementia, identifying 145 individual conditions. It also gives data on incidence, prevalence, mortality, age of onset and diagnosis. 


Expert panel discussion
on this important research.
December 2023.

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Dr Kris Elvidge, Head of Research at the Childhood Dementia Initiative and Dr Nicolas Smith, Head of Paediatric Neurodegenerative Diseases Research Group at the University of Adelaide worked with leading researchers, clinicians and health economists on this groundbreaking study. This included experts from University of NSW and Murdoch Children’s Research Institute. Published data from Australia and overseas was analysed and health economists at Thema Consulting undertook modelling. 

“Childhood dementia is a cruel condition that robs children of the skills that they have only just learned – to speak, play and to recognise their loved ones. This can happen over months, years, or decades until eventually the brain loses the ability to keep the body alive,” said Dr Elvidge.

“This study provides a clearer picture of who is affected by these devastating and under-recognised conditions,” said Dr Nicholas Smith, Head of Paediatric Neurodegenerative Diseases Research Group at the University of Adelaide.

“The 145 disorders we have classified as childhood dementia are complex and varied. Tragically, what they share in common is the heartbreaking, progressive neurocognitive decline and a severely shortened life expectancy.”

The research reveals dementia symptoms typically start when children are just 2.5 years old. The average age of diagnosis was identified as around 4 years old. 

The average life expectancy for patients is just nine years, with 70 percent of children dying before they turn 18.

Why this research matters

This research gives the world clarity on childhood dementia's impact. For the first time, definitive data on childhood dementia is available globally. 

“Publication in an international medical journal will raise awareness of the scale of childhood dementia with researchers, clinicians, governments and policy makers,” says Childhood Dementia Initiative CEO, Megan Maack. 

“This important study confirms how serious childhood dementia is. It gives compelling reason to act,” adds Maack. 

What did the research reveal?

  • There are at least 145 genetic conditions that cause childhood dementia. They are all terminal. There are no cures.
  • 1 in 2,900 children born will develop childhood dementia. 
  • In Australia, 2 babies are born every week who will develop childhood dementia. This is as common as cystic fibrosis.
  • Childhood dementia is so severe, that half of all children die before they’re 10.
  • Only 29% of children with dementia reach adulthood.
  • It is estimated that 91 people in Australia, 204 in Britain and 1,077 in the US died in 2021 due to childhood dementia respectively. For comparison, 92 children aged 0-14 years die annually in Australia from childhood cancer, 260 in Britain and 1,050 in the USA.
  • It’s estimated only 1,400 people in Australia are alive with childhood dementia today. One of them dies every 4 days.
  • Childhood dementia symptoms typically start at around 2.5 years of age. On average, diagnosis occurs when chilren are 4 years of age. However, there is a wide spectrum across the different conditions that cause childhood dementia.