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Childhood Dementia Support in Australia


Tom (aged 7) is affected by Batten disease, a common form of childhood dementia’
Tom (aged 7) is affected by Batten disease, a common form of childhood dementia

Childhood dementia is a rare genetic disease that describes over 100 different conditions. A recent study estimates that a child is born in Australia with one of these conditions every three days.

Symptoms of childhood dementia can be similar to adult dementia with progressive loss of memory, concentration, speech, and the ability to move. Children living with dementia will experience confusion, distress and changes in behaviour. Sadly, most die before reaching adulthood.

How we support children living with dementia

Dementia Support Australia is working together with organisations that support families with children diagnosed with dementia. Dementia Support Australia has trained consultants who understand childhood dementia and its related symptoms, the impact on the person with dementia, and carers and families. DSA provides professional and practical strategies and recommendations to support families caring for their child improve their quality of life.

Call 1800 699 799 to talk to a trained Dementia Support Australia consultant.

Our Partners in Childhood Dementia Support

Battens Disease Support and Research Association Australia

Logo of Battens Disease Support and Research Association Australia

Batten Disease Support & Research Association Australia's (BDSRA Australia) commitment is to improve the lives of children and families affected by Batten disease through support, research funding, and advancing education and awareness of Batten disease in Australia.

BDSRA Australia and DSA work together to provide personally tailored support to families with children affected by Batten disease, one of the most common forms of childhood dementia. DSA, with ongoing support of BDSRA Australia, has a team of specialised, trained consultants who understand Batten disease and childhood dementia, its impact on patients, carers and families, and who are able to provide timely, professional and pragmatic support to families.

“I never really thought of my child as having ‘dementia’, but now that I have learned more about it, and the behaviours and challenges that come with childhood dementia, I can see how clearly relevant this is to us. I want to know more about how we can better manage the dementia aspects of her illness.” - Mother of child with CLN2 disease

Batten Disease Support and Research Association Australia (BDSRA Australia)

Childhood Dementia Initiative 

Childhood Dementia Initiative Logo

The Childhood Dementia Initiative raises awareness of childhood dementia through its strong advocacy networks and identifies priority research areas to find better ways to treat childhood dementia and improve quality of life.

Megan Donnell, founder and CEO of Childhood Dementia Initiative wants to improve access to support for children with dementia. “We're delighted to be working alongside Dementia Support Australia as they expand their important services to children. I’m grateful for the opportunity to personally benefit from their support and look forward to seeing outcomes for more families improve as a result.”

In 2021, Megan contacted DSA to support her children Isla and Jude, who have childhood dementia caused by Sanfilippo Syndrome. After visiting and meeting with Megan, Jude, Isla, their carers and allied health support team in their home, a Dementia Consultant made recommendations to help improve day-to-day life.

 “They describe it as putting a ‘dementia lens’ over what’s happening. That’s exactly what they did,” Megan explains. “That lens helps to better understand Isla and Jude’s behaviours and what triggers them.”

“The support provided by Dementia Support Australia was the most practical, useful and effective service that I’ve accessed since Isla and Jude’s diagnoses.”

Childhood Dementia Initiative