No longer a ‘statistic’

The 'No Longer a Statistic' campaign reveals there are specifically now at least 25,100 people under the age of 65 years with dementia (referred to as 'Youngest Onset Dementia'.

By 2050, this number will have jumped to 36,800. Campaign organisers say it’s a big issue for Australia and dementia is not an older person’s disease.

Alzheimer’s Australia chief executive, Carol Bennett, says there is strong concern about the future of the only existing program currently helping people one on one with younger onset dementia in Australia.

She highlights the highly successful federal government funded program, the Younger Onset Dementia Program, needs to be expanded because of the sheer level of need.

She points out current indications suggest this specialised service will be rolled into the NDIS from July of next year, adding that the NDIS will not be able to cope effectively with people under 65 years in Australia with dementia.

Overall 342,800 Australians live with dementia. By 2050 that number is expected to jump to 900,000. Dementia is estimated to be costing Australia $6 billion in health care and lost productivity.

The program was only established in 2013, after years of demands for a specialised program to help people. It is recognised as an important move forward, and is funded by the federal government's Department of Social Services.

Ms Bennett claims the program needs to be expanded because there are still people in Australia not receiving the critical help they need.

According to Ms Bennett, the federal government needs to invest further in helping people with Younger Onset Dementia or they will face much greater costs in the near future.

“There is a common belief that people with dementia live in residential aged care. They simply do not. In fact, 70% of people living with dementia actually live in the community. There is a real lack of awareness around dementia. That includes health professionals,” she says.

“People with Younger Onset Dementia frequently face stigma, discrimination and sometimes people not even believing they have dementia. The diagnosis of dementia in younger people often takes longer than it does for older people. Many people end up seeing numerous specialists before getting a diagnosis.”

She adds younger people with dementia are often in a job, may have young children and their world is turned “upside down” when they are diagnosed.

“They may be asked to conform to a range of services that are not even designed for their age bracket,” she says.

Thousands of people have reportedly been helped by the Younger Onset Dementia Key Worker program.

One of them is Melissa McMellon, whose husband developed Younger Onset Dementia at age 52. 

“We were in deperate circumstances. Three teenage children, one of which was sitting their HSC, a mortgage and an unwell husband who had just lost his job of 10 and a half years due to his failing health,” Ms McMellon says.

“Thanks to the help we received from the Key Worker Program our lives have been transformed. We were given support to reach a diagnosis, help to lay down a strong support structure and much-needed assistance navigating very complex systems,” she says.

Alzheimer's Australia is currently working with a range of people aged just 30 to 34 years or 35 to 39 years. The most common causes of dementia in younger people are Alzheimer's disease, stroke and frontotemporal dementia.

“We congratulate the government for seeing this as an area that needs priority funding, and ask for their continued support. The program is a vital one stop shop for people in challenging and distressing circumstances. The strengths of the program are that it works for the person to meet their needs and it’s individualised,” Ms Bennett says.

Find out more about the 'No Longer a Statistic' campaign.