Childhood dementia petition launched

A petition calling on the Australian government to direct more funding and action to childhood dementia has been launched by Childhood Dementia Initiative. This petition supports the Initiative’s ongoing engagement with government decision-makers. 

“Our goal is to ensure that childhood dementia, for the first time, is firmly on the government’s agenda,” says Megan Donnell, CEO and Founder of Childhood Dementia Initiative.

A video featuring 16-year-old Angelina has helped generate a greater understanding of the impacts of childhood dementia and the need for action. Angelina had no symptoms until she was 14 years old. Today, she is unable to attend school and suffers from significant cognitive decline. 

There are an estimated 700,000¹ children and young people worldwide suffering from dementia. They suffer declines similar to those experienced by adults with dementia: they lose their memories, concentration, speech and ability to move. They suffer from confusion, distress, hallucinations and personality changes. Most die before reaching adulthood. 

More than 70 genetic childhood dementia disorders have been identified. Fewer than 5% have treatments and they attract little research, funding, or coordinated responses. For instance from 2018 to 2020, the Australian government’s medical research funding body, the NHMRC, dedicated 38 times more to motor neurone disease ($17.9 million) and 29 times more to cystic fibrosis ($13.8 million) than to childhood dementia ($475,000).

Yet as many people are living in Australia today with childhood dementia (an estimated 2,733²) as motor neurone disease (reported to be 2,094 in 2015³). And as many children are born with childhood dementia (an estimated 1 in 2,800) as cystic fibrosis (approximately 1 in 2,874⁴).

Childhood Dementia Initiative is calling for urgent change:

• More research funding for childhood dementia
• A new approach to research that would accelerate progress. This includes global partnerships and research on multiple disorders at the same time
• Improved care and quality of life for children with dementia

¹ Tilden D, Valeri M and Ellis M. (2020, Nov). Childhood dementia in Australia: quantifying the burden on patients, carers, the healthcare system and our society. Report for Childhood Dementia Initiative. THEMA Consulting Pty Ltd.,. www.childhooddementia.org/burdenstudy

² Ibid.  

³ Massie RJ, Olsen M, Glazner J, Robertson CF, Francis I. Newborn screening for cystic fibrosis in Victoria: 10 years’ experience (1989–1998). Med J Aust 2000 Jun 19;172(12):584-7.

⁴ Deloitte Access Economics Report (2015). Economic analysis of motor neurone disease in Australia. https://www.mndaust.asn.au/Influencing-policy/Economic-analysis-of-MND-(1)/Economic-analysis-of-MND-in-Australia.aspx