Dementia Australia calls for greater awareness of young onset dementia
Dementia Australia
Ahead of Young Onset Dementia Awareness Day (24 October), Dementia Australia is calling for greater awareness of young onset dementia and the specific challenges experienced by people living with the condition, as well as their families and carers.
Young onset dementia refers to dementia diagnosed between the ages of 18 and 64 years. In 2026, there are an estimated 29,000 people living with young onset dementia across Australia. This number is expected to increase to an estimated 41,000 people by 2054.
People living with young onset dementia are at a life stage where they often have younger families, are working or planning for their retirement and can be otherwise generally fit and healthy when they receive a diagnosis.
Dr Kaele Stokes, Executive Director Services, Engagement and Research at Dementia Australia said diagnosing young onset dementia can often take years, and even with a diagnosis, accessing the right support at the right time can be difficult.
“As part of Dementia Australia’s advocacy work, we recently surveyed people living with young onset dementia, or caring for someone with the condition, about their experience in accessing supports. They told us the experience of living with young onset dementia can fluctuate and change daily, which can make it difficult to assess functional abilities and underestimate the impact of the condition,” Dr Stokes said.
“Unfortunately, this can mean that people aren’t receiving the right level of support and care at the right time.
“Feedback from our survey also showed the impact young onset dementia has on family members and carers. Carers tend to put their caring role before their role as a partner, often while balancing financial responsibilities and caring for young children.
“Our consultation particularly highlighted the challenges people living with young onset dementia can experience in accessing timely supports though the National Disability Insurance Scheme, including accessing additional help as their needs change. These insights are informing Dementia Australia’s advocacy on NDIS reforms.
“We need to raise awareness of young onset dementia and continue to advocate for people living with the condition. Dementia Australia is here for anyone impacted by dementia at any age. Nobody needs to face a diagnosis of dementia alone and we have dedicated resources and support services available for people living with young onset dementia, their families and carers.”
Dementia Australia Dementia Advocate Chris McNally, a carer for her husband Craig, who was diagnosed with young onset frontotemporal dementia in his late 50s, said raising awareness of the condition is vital.
“When Craig first started showing symptoms, we were told it could be male menopause or a midlife crisis, before he was initially diagnosed with bipolar. Dementia wasn’t even considered and it took years of us pushing for additional testing and investigations to finally get a diagnosis of frontotemporal dementia,” Chris said.
“Even after we had received that diagnosis, people would say, ‘Craig can’t have dementia, he’s too young’. So many people still don’t know about young onset dementia, which is why we need to keep raising awareness of it. We can’t keep seeing people fall through the gaps when it comes to diagnosis or support.”
Dementia Australia offers services and supports dedicated to people living with young onset dementia, their families and carers, including individual and family counselling, occupational therapy, support to navigate the National Disability Insurance Scheme (NDIS) and Dementia Advocates and Connecting Peers support programs for people impacted by all types of dementia.
Dementia Australia also works with additional service providers to help people living with young onset dementia access more support.
The Dementia Australia Young Onset Dementia Guide is available to download for free at https://www.dementia.org.au/about-dementia/young-onset-dementia/young-onset-dementia-guide
Anyone in need of dementia information or support, whether for young onset dementia, or any other form of dementia, can contact the National Dementia Helpline anytime on 1800 100 500 or by visiting dementia.org.au
Dementia Australia is the source of trusted information, education and services for the estimated more than 446,500 Australians living with dementia, and the more than 1.7 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you.
For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au
Media contacts: Andrea Hogan, Media Relations and Communications Manager, 0406 904 118, [email protected]
When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.
Note to Editors:
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If this story has prompted any questions or concerns, please call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au.