Childhood dementia: spotlight on a rare disease

Friday, 26 February, 2021

Childhood dementia: spotlight on a rare disease

Ahead of Rare Diseases Day on Sunday, 28 February, we shine a spotlight on childhood dementia, which affects 2300 children in Australia.

Around the world, 700,000 children and young people are living with childhood dementia. With more than 70 different genetic causes of dementia in children, less than 5% of the disorders have a treatment and most children never reach adulthood.

Associate Professor Kim Hemsley’s studies into childhood dementia are helping to unlock answers that can assist treatment of these largely unheralded conditions.

Associate Professor Kim Hemsley.

Associate Professor Hemsley leads the Childhood Dementia Research Group within the Flinders Health and Medical Research Institute (FHMRI) at Flinders University, which is a team of medical researchers whose goal is to identify and test treatments for childhood-onset dementia.

“People are surprised and very saddened when I tell them that unfortunately, yes, children get dementia too. It’s typically something associated with ageing,” Associate Professor Hemsley said.

Due to the limited awareness of childhood dementia, she is using the attention focused on Rare Diseases Day as an opportunity to spread the word and help gain wider public attention for rare disorders and work being undertaken by the Childhood Dementia Research Group.

“Rare Diseases Day is an important international campaign that aims to raise awareness of what it means to be rare. There are more than 300 million people worldwide living with a rare disease. Through doing research into more than 6000 rare diseases, the global medical fraternity works towards more equitable access to diagnosis, treatment, care and social opportunity,” Associate Professor Hemsley said.

“The aim of our work is to develop treatments in the lab and see them move into the clinic so that these children and their families can have a normal life.

The Childhood Dementia Research Group recently published a paper in international journal Acta Neuropathologica Communications, highlighting the potential for using widely available retinal imaging techniques to learn more about brain disease and monitor treatment efficacy.

Sanfilippo syndrome — an untreatable form of childhood-onset dementia — is one of a group of about 70 inherited conditions that collectively affect one in 2800 children in Australia, making them more common than cystic fibrosis and other better-known diseases.

Associate Professor Hemsley said this research fits neatly into the key message for Rare Disease Day 2021, which is: Rare is many. Rare is strong. Rare is proud.

“We encourage everyone to take part in this campaign, because awareness leads to empowerment — and with the whole community supporting action, we will move further down the path to finding crucial medical solutions.”

To learn more about childhood dementia, visit

Top image credit: ©

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