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.
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.
