Younger people living with dementia will be more likely to go into residential care when a vital early intervention program is axed, Alzheimer's advocates have warned.
The Key Worker program, which gives specialised one-on-one support to people under 65 with dementia, has been described by patients as a transformative influence on their lives when existing services for dementia care are not designed for their age bracket.
But it will lose its funding when the National Disability Insurance Scheme is rolled out nationally in July next year.
At least 8400 people in NSW aged between 30 and 65 have dementia, and they are expected to number more than 9000 within five years.
Alzheimer's Australia chief executive Carol Bennett said residential care and many outpatient programs were not appropriate for patients with younger onset dementia, who had invariably had dependent children and jobs.
The key worker acted as an advocate and primary contact for people with early onset dementia and their families, and helped people to get a diagnosis, which was often a slow process as medical specialists were not expecting to find it and patients were in denial.
"The key worker comes in and works with the family at the earliest point that we can intervene," Ms Bennett said. "It's critical that we do because people will otherwise end up in acute care hospital services or residential care, which is completely inappropriate to their needs."
Leonie Hemming, 55, was admitted to hospital for malnutrition before doctors arrived at a diagnosis of younger onset dementia. Her weight had plunged from 65kg to 36kg.
"In that time apparently I'd forgotten to eat and that's the way the weight loss happened, because I'd forgotten that I'd forgotten to eat," Ms Hemming said.
She is now taking part in the NDIS trial in the Hunter, which she says has been a life-changing experience, but would not have been possible without support from her key worker, who told her what the NDIS was and navigated her through the system.
"I would have been lost without them. I would have been in a hole without knowing how to get out," she said.
Ms Bennett said only 10 per cent of people with younger onset dementia at the trial sites in Victoria got access to the NDIS, because it was not available until there was a positive diagnosis.
"The NDIS hasn't demonstrated a capacity to deliver the kind of services that people with younger onset dementia need and it's not your typical disability."
A spokesman from the Department of Social Services said people with younger onset dementia would be eligible for support through the NDIS and the key worker program would be phased out slowly.
"The Department is in talks with Alzheimer's Australia and the National Disability Insurance Agency to understand how the package of support Alzheimer's Australia currently provides to people with younger onset dementia fits with the NDIS model in practice, and whether any adjustments are needed to the current plan," he said.