Service for young people with dementia 'threatened' by national disability scheme
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Version 0 of 1. Alzheimer’s Australia says the future of the only program to help young Australians diagnosed with dementia will be jeopardised if it is absorbed by the National Disability Insurance Scheme (NDIS) next year. With one in 13 people with dementia now aged under 65, the highly specialised program was essential to provide one-on-one support to those with younger-onset dementia, NSW branch CEO John Watkins said on Thursday. The NDIS would not cope with the 25,100 people under the age of 65 with dementia currently serviced by the specialised program, he said. “The NDIS is important, and we applaud it,” Watkins said. “But we’re opposed to this program falling under it because the NDIS wasn’t set up to deal with someone with the progressive, degenerative disease that is younger-onset dementia. We don’t think the specialised service we offer fits comfortably within the NDIS. “We’re in a debate with the federal government because we want to continue to deliver the program the way it is being delivered now, because we know that it works.” Called the National Younger Onset Dementia Key Worker Program, it is funded by the federal government, and those with the condition and their family are given a support person who provides them with information, support, counselling and advice. The assistant minister for social services, Mitch Fifield, did not say in what form the program would be run after July next year, when the NDIS is set to be rolled out. “I have been having good discussions with Alzheimer’s Australia about how government support for people with younger-onset dementia is best provided and whether adjustments to the previous government’s plans are required,” he said. Watkins said the service also needed to be expanded, with 36,800 people under 65 expected to be diagnosed with early-onset dementia by 2050. Overall, 342,800 Australians live with dementia, costing $6bn in healthcare and lost productivity each year. It is a terminal condition and the second-leading cause of death. Dementia in younger people is less common than dementia occurring after the age of 65, and for this reason it can be difficult to diagnose. While there are many suspected causes, the leading causes are Alzheimer’s disease and alcohol. Diagnosis is improving thanks to greater awareness of its symptoms, which include memory loss, personality changes and irritability. But dementia in younger people often takes a long time to detect, with patients reporting they see numerous specialists before being diagnosed. The director of the academic department for old age psychiatry at Prince of Wales Hospital in Sydney, Professor Brian Draper, said it depended on the cause of the dementia as to how easy it was to diagnose and then treat. “Sometimes the cause is obvious, for example if a person has a severe traumatic brain injury, but where it becomes difficult for diagnosis is when younger people who develop it have other conditions which may be seen as causing their symptoms, such as depression. “Other times, the person is not aware of the changes in their own behaviour and it takes a family member to encourage them to seek help.” The was no evidence to suggest younger-onset dementia rates were increasing, Draper said. The national chief executive of Alzheimer’s Australia, Carol Bennett, said younger people with the condition frequently faced stigma and discrimination, with some people not believing they have dementia because of their young age. They also faced unique challenges in planning for their future with the disease, she said. “Younger people with dementia are often in a job, may have young children and their world is turned upside down when they get diagnosed,” she said. “They may be asked to conform to a range of services that are not even designed for their age bracket.” |