young person with dementia, early onset dementia, young onset dementia

Aged and disability services provider VMCH has teamed up with dementia support organisation Caladenia to help fill the gap in services for people with early onset dementia.

Elizabeth Baxter

About 28,000 Australians have young onset dementia, which is used to describe any form of dementia diagnosed in people under 65. Dementia Australia predicts that the figure could rise to more than 41,000 by 2058 unless there’s a major medical breakthrough.

VMCH dementia services specialist Elizabeth Baxter says YOD can be tricky in terms of service provision.

People affected by YOD tend to be physically fit and active, so they don’t fit well into the aged care space. However, the disability sector is often lacking in dementia experience.

“I think we just need a better integration of knowledge,” she says.

From aged care to NDIS

Ms Baxter says YOD historically sat within the aged care system, but policy changes over recent years have seen funding for YOD fall under the NDIS, and as a result many organisations have dropped their YOD programs.

“Historically going back 5-10 years YOD sat within the aged care system so in terms of funding streams people who had a diagnosis would have received a home care package,” she told Community Care Review.

“But now that they sit under the NDIS and its disability-driven funding. But the people who are supporting people within an NDIS package and care plan setting may not have experience in dementia as a condition their training is more in the disability space.”

Pooling resources

In response to this, VMCH has joined with Caladenia Dementia Care to form the Dementia Knowledge Network, which aims to collaborate with others in the sector to learn about new research and support opportunities for people with dementia and their carers.

It currently holds focus groups dedicated to YOD and offers carer support programs.

“Through the network, we established that there was a lot of gaps for people with younger onset dementia where they might be eligible for an NDIS funding package but they may not be able to find an actual funded service to spend that money on,” Ms Baxter says.

“So we put our heads together and invited other organisations to see how we can pool our resources and try to better support people with younger onset dementia.”

Ms Baxter says anyone involved in the provision of dementia services, YOD researchers and people with YOD and their carers are encouraged to get involved in the network.

“There’s a lot of organisations with a lot of good intentions and they have the resources to provide the support,” she says.

“Hopefully providers can think outside the square a bit and develop new and more targeted services.”

More information is available via Caladenia.

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