New Australian-led resource for people with young-onset dementia
With the rate of young-onset dementia on the rise, a new online resource has been launched to provide evidence-based support to newly diagnosed Australians.
Young-onset dementia occurs before the age 65 and is often misdiagnosed as anxiety or depression, with people often waiting between three to five years for a diagnosis.
The website has been re-developed to provide new resources for Australians. Image iStock
Funded thanks to the exceptional generosity of Christine Rowell-Miller and the Lovell Foundation, the website, called Forward with Dementia, has been redeveloped and now includes an entirely new focus targeting those who have had a recent diagnosis of young-onset dementia and their families.
Associate Professor Samantha Loi, Deputy Head of the Department of Psychiatry at the University of Melbourne, co-led the project and said it is an important tool for Australians to help fill some of the gaps in post-diagnostic care.
“Sadly recent research shows the prevalence and incidence of young onset dementia is increasing,” Associate Professor Loi said.
“We also know it can be a daunting, lonely time after being diagnosed, and previous research shows us that people living with younger onset dementia have really varied experiences in terms of support.
“It can also be hard to leave a doctor’s office and wonder “what’s next?” and we really hope that our new website, which was designed and written with people with lived experience, is a helpful guide.”
Associate Professor Loi, who is also a consultant neuropsychiatrist at the Royal Melbourne Hospital Mental Health Services, said people with young-onset dementia and loved ones have played a significant role in the development of the website.
“In my clinic, people will often share that they feel overwhelmed with the huge amount of information online, it can be difficult to know where to find what you need,” she said.
Project co-leader Dr Meredith Gresham, visiting fellow at the University of New South Wales, said: “The website provides short, easy to read articles on an enormous range of topics, that also give the ability to do a deep dive into linked, trustworthy resources. We’ve improved the navigation and search functions and updated the website with new treatments and stories of people living positive lives with dementia.”
Forward with Dementia was an international collaboration led by University of New South Wales Professor Henry Brodaty, 2026 Senior Australian of the Year, and a leading expert in Australian dementia research and clinical care. The website was first launched in late 2021.
“This is an important website that provides not only people living with dementia and their families easy to digest information to live well following a diagnosis, but it is a valuable resource for clinicians to help them communicate the diagnosis and support their patients after,” Professor Brodaty said.
Forward with Dementia™ is a collaborative program created by the University of New South Wales, the University of Sydney, the University of Wollongong (Australia), McGill University, University of New Brunswick, University of Waterloo (Canada), Maastricht University (Netherlands), Wroclaw Medical University (Poland), University College London, Newcastle University (United Kingdom), Alzheimer’s Disease International and Dementia Alliance International (Consortium), University of Melbourne and Royal Melbourne Hospital.