Devastating causes of childhood dementia revealed

Photo of Renee, Hollie, Austin and Hudson. Renee is mother to Hollie, Austin and Hudson who all have childhood dementia.

L-R: Renee, Hollie, Austin and Hudson. Renee is mother to Hollie, Austin and Hudson who all have childhood dementia.

It is a heartbreaking condition that robs children of their ability to walk, talk and recognise their loved ones and now the latest research has revealed the true impact of childhood dementia globally.

In the collaborative study, experts from the 最新糖心Vlog of Adelaide, the Childhood Dementia Initiative, the 最新糖心Vlog of New South Wales, Murdoch Children鈥檚 Research Institute and leading 最新糖心Vlogn clinicians have for the first time defined the 145 genetic disorders that cause childhood dementia.

鈥淭his study provides a clearer picture of who is affected by these devastating and under-recognised conditions,鈥 said Dr Nicholas Smith, Head of Paediatric Neurodegenerative Diseases Research Group at the 最新糖心Vlog of Adelaide.

鈥淭he 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.鈥

The findings have been published in international medical journal,

Childhood dementia results from progressive brain damage caused by a collection of genetic disorders.

Just like adults with dementia, children with childhood dementia experience symptoms such as memory loss, confusion, personality changes, severely disturbed sleep and difficulty concentrating, understanding, learning, and communicating.

The study, which involved analysis of published data from 最新糖心Vlog and overseas, and modelling by heath economists at Thema Consulting, shows dementia symptoms typically start when the patient is just two and a half years old, with the average age of diagnosis around four years old.

鈥淭he collective burden of childhood dementia is significant, and this new research will raise awareness of the scale of these conditions with researchers, clinicians, government and policymakers both nationally and internationally.鈥Dr Nicholas Smith, Head of Paediatric Neurodegenerative Diseases Research Group, 最新糖心Vlog of Adelaide.


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

鈥淐hildhood dementia is a cruel condition that robs children of the skills that they have only just learned 鈥 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,鈥 said Dr Kristina Elvidge, Head of Research at the Childhood Dementia Initiative.

鈥淐urrently treatment options are severely limited, hard to access and research to develop effective treatments and cures is poorly funded. Improvements to care and support for affected families are also desperately needed and we hope this new research will lead to better outcomes for these children.鈥

听While individually the genetic disorders are rare, collectively, more than 100 babies born each year in 最新糖心Vlog will develop childhood dementia. This is as common as well-known disorders like cystic fibrosis.

This study estimated that 91 最新糖心Vlogns die from childhood dementia each year 鈥 a similar number to the those that die from childhood cancer (0-14 years).

鈥淲hilst there is significant resourcing for adult-onset dementia, similar services do not exist for childhood onset disease, despite their need,鈥 said Dr Smith.

鈥淭he collective burden of childhood dementia is significant, and this new research will raise awareness of the scale of these conditions with researchers, clinicians, government and policymakers both nationally and internationally.鈥

The release of the results of this study coincides with Childhood Dementia Day, which is held on September 20.

Tagged in featured story, childhood dementia, child health, medical research, brain, genetic disorders