More than 25,000 Australians are now living with early onset dementia, with the latest figures predicting that number to grow to nearly 37,000 by 2050. According to Alzheimer's Australia the number of people developing dementia before the age of 65 – some in their 30s and 40s – now makes up 7.7 per cent of the overall 342,8000 Australians currently diagnosed with the condition.

While the federal government has pledged an additional $200 million towards dementia research, Alzheimer's Australia chief executive Carol Bennett said the only program currently providing specific one-on-one support for younger onset sufferers and their families was at risk in the transition to the NDIS.

"The [Younger Onset Dementia Key Worker] program is being transitioned to NDIS and by and large it will do that well, but the problem is that for people with dementia you need to work with the carers and the whole family. Those younger onset patients have unique needs because they are often raising young children or are a main income-earner. The services offered under the NDIS are not always appropriate and are quite limited for their specific needs," Ms Bennett said.

Belconnen family Mark and Nicole Nicholson said the support they had received under the younger onset dementia program had helped them cope with the sudden onset of dementia in Mr Nicholson's father, John.

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Mr Nicholson senior, now in his 60s, is still able to live in his home with the support of a carer under the government-funded program, which has also made extra help available to the rest of the family, including their young children who help with the caring.

"He attends a walking session with other people his age; they're looking into swimming sessions because he loves to swim; and it's put us in contact with the right people to provide advice and support," Mr Nicholson said.

The family's carer had also helped Mr Nicholson's mother accept that she didn't have to carry the entire burden of care alone.

"She has seen a counsellor, we've been able to organise visual aids in the house, they've given Dad a special accessible phone so he can call us if he gets into trouble – basically helping out with things that Mum was struggling with," Mr Nicholson said.

With their family likely to face difficult decisions about housing for Mr Nicholson's father in the coming years, they were concerned that they may lose some of the support that had helped them cope, potentially taking away assistance they had come to rely on.

Ms Bennett said the federal government had shown a commitment to both researching a cure and providing care for those with dementia to date, and she was hopeful ongoing discussions would find a solution that would allow those services to continue.