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New campaign launched today (Thursday June 11) highlighting that a staggering 1 in 13 people with dementia are now under the age of 65 – and a number of these people are in their 30s and 40s.

The “No Longer a Statistic” campaign reveals that there are specifically now at least 25,100 people under the age of 65 with dementia (referred to as “Younger Onset Dementia”).

By 2050 this 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 CEO 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 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. She says the NDIS will not be able to cope effectively with people under 65 in Australia with dementia.

She says the data speaks for itself. 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.


Dementia Australia launches a new campaign today (11th June) that reveals a staggering 1 in 13 people with dementia are now under the age of 65. A range of these people are in their 30s and 40s.

The campaign - "No Longer A Statistic" - also reveals there are now 25,100 people in Australia under the age of 65 with dementia (referred to as Younger Onset Dementia). 

Alzheimer’s Australia highlights that by just 2050 the number of people under 65 with dementia will have jumped to 36,800 across Australia.

Dementia Australia CEO Carol Bennett says the organisation is currently extremely concerned about the future of a highly pioneering program (funded by the Federal Government) being run in Australia which supports people with specialised one on one support in Australia who have Younger Onset Dementia.

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.

Carol Bennett says it has been life changing for many people. She highlights current indications show this specialised service is going to be rolled into the National Disability Insurance Scheme from July next year. 

She says the unique program needs to be expanded because there are still people in Australia not getting the critical help they need. 

Dementia Australia is currently working with a range of people aged just 30 to 34 or 35 to 39. The most common causes of dementia in younger people (Younger Onset Dementia) are Alzheimer's disease, stroke and frontotemporal dementia. Dementia is not a single disorder.

There are already more than 342,800 Australians living with dementia nationwide. That number will rise to 900,000 by 2050. There are 242 new cases of dementia every single day. It is costing the Australian economy $6 billion in healthcare and lost productivity.

Overall dementia is now the second leading cause of death in Australia. Australia now has a million carers helping people with dementia.

Carol Bennett says the Federal Government needs to invest further in helping people with Younger Onset Dementia or they will face much greater costs in the very near future.

She said, "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."

"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."

Carol Bennett from Dementia Australia 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. They may be asked to conform to a range of services that are not even designed for their age bracket."

Globally the issue is so huge that by 2013 there were already 44 million people with dementia - enough people, in essence, to fill Australia twice. By 2050 it is expected globally 135 million people will have dementia, with one new case being diagnosed every six minutes. Put simply, by 2050, the number of people globally with dementia will be enough to fill Australia over 5 times, based on our current population.

Thousands of people have 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 desperate circumstances,” she said. 

Melissa McMellon said, “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. 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.”

Carol Bennett said, “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.


For more information on Younger Onset Dementia, please see the following links:

Dementia Australia's National Younger Onset Dementia Key Worker Program

About younger onset dementia

Services available for people with younger onset dementia