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With the rate of dementia among younger Australians expected to soar, the push is on to generate greater awareness and support.
More than one million people nationwide are projected to develop the progressive and irreversible condition in the next four decades.
Yet more alarming still, those aged between 18 and 64 diagnosed with young-onset dementia will likely rise by 40 per cent.
That's starting from an estimated 30,000 current cases but the true number could be much higher, according to Young Dementia Australia, or YoDA.
Research into its prevalence must be a priority, the peak body's chair Clare Beard says.
Established in September 2025, her organisation is Australia's first dedicated to people and their families living with young-onset dementia.
Hundreds of people diagnosed with the condition have since reached out for support, Dr Beard said on Saturday.
Others have offered their time to advocate for better services.
She and her colleagues have been in discussions with all sides of politics ahead of plans to launch a national support line staffed by peer workers in 2027.
"The response has been extraordinary," Dr Beard said.
"People have waited years for an organisation of their own and now it is here, they are not only reaching out for help – they are rolling up their sleeves to help others."
People diagnosed with dementia in their 30s, 40s and 50s are often still working and raising children.
They want support from people who understand their lives, YoDA chief executive Bronwyn Morkham said.
"Women are disproportionately affected, more likely to be diagnosed and more likely to be the ones supporting a spouse or partner, children and parents at the same time," she said.
"When young-onset dementia hits, it has a 360-degree impact on people's lives."
Then there is the financial hit, with people losing work and their aspirations derailed.
"We have the solution and now we need Australians to get behind it," Dr Morkham said.
Australians impacted by young-onset dementia can sign up and tell their local, state and federal members of parliament what they need.
YoDA says the biggest demand is for support for people and their families first to be diagnosed and then to get age-appropriate help.
To get there, it needs backing from the community, philanthropy and business.
The call for assistance coincided with International Young Onset Dementia Awareness Day on Saturday.

