White paper

Our white paper, Childhood Dementia: the case for urgent action highlights the size, scale and wide-reaching impacts of childhood dementia and importantly outlines the overwhelming opportunity to act. The Childhood Dementia Initiative is here to do just that. 

Download the white paper now

Key Facts from the white paper

  • Childhood dementia is caused by more than 70 individual genetic conditions. 
  • Fewer than 5% of the conditions causing childhood dementia have a treatment.
  • One in 2,800 children born will develop childhood dementia. 
  • Collectively, the life expectancy for childhood dementia is estimated to be 28 years. Many die in early childhood, even infancy.

For Australians the impact is:

  • Each year 129 babies are born with a condition that will lead to childhood dementia. That is one born every 3 days.  
  • It is estimated that there are 2,273 Australians currently living with childhood dementia, 1,396 of whom are under the age of 18.
  • Every year more than 90 young Australians die, having lived their short lives suffering from childhood dementia.
  • The total economic cost of childhood dementia in Australia is $389 million annually. The cost to the families who love these children is immeasurable.

Globally the impact of childhood dementia is:

  • 50,000 births every year.
  • 700,000 individuals currently living with childhood dementia.
  • 48,300 premature deaths annually.