How Dr Monica Cations hopes to bridge the gaps for young onset dementia care

Most undergraduate university students work in retail or hospitality, moving on to other industries when they graduate. But when Monica Cations left school to study psychology, she chose to work in a nursing home as a personal carer.

And it changed her life...

‘I met some young people with dementia, because at the time, the only housing option for them was residential aged care,’ Monica said. ‘There was no disability care. There was no independent living. It’s such a unique experience, and the generalist care and support available just wasn’t meeting their needs.’ 

Armed with her psychology degree, she moved into a role with Dementia Australia and helped develop the first psycho-education program specific to young onset dementia. Then, after gaining a PhD, she threw herself into what had become her passion – re-thinking the system and service delivery that supports people with young onset dementia, particularly in the early stages around diagnosis. 

Today, Monica is a clinical psychologist who has worked with older adults and people with dementia for nearly two decades, with a special interest in supporting young people living with dementia and older people who have survived psychologically traumatic events. She’s also an Acting Director in the Australian Government Department of Health, Disability and Ageing and a Senior Research Fellow at Flinders University, marrying her twin interests of research and policy reform. 

Monica will join a panel at the International Dementia Conference 2026 to discuss the particular challenges that rarer dementias bring, as well as some solutions. 

Hidden challenges of young onset dementia

‘If you talk to someone with young onset dementia or their family, they’ll talk about the long, difficult and distressing diagnosis process, but also about this cliff they fall off after they’re diagnosed,’ she said. ‘There’s very little support and very few resources, and what does exist is clustered in just a few major cities.’ 

They talk about this cliff they fall off after they’re diagnosed. There’s very little support and very few resources...

Furthermore, the system is still struggling to bridge the gap that young onset dementia represents between the NDIS and aged care funding. 

‘Before the NDIS, the disability industry didn't have any experience with dementia,’ said Monica. ‘So they really didn't know what to do, whereas the aged care sector obviously has heaps of experience with dementia, but they weren't so good with young people. So, the funding is better now, but there’s not always the resources to support it.’ 

Additionally, if someone is diagnosed with dementia before the age of 65, they access a relatively generous source of funding from the NDIS, no matter how long they live. But a day over 65 (which is still considered young for dementia onset), they receive far less. 

But, if there’s one policy question she would like to answer, it’s this: How can governments fund services that meet the needs of people with a rare illness – especially in the early stages post-diagnosis – across an enormous geographical area and a massive workforce, who might come across one young person with dementia in their whole career?

Strategies for change

Among several ideas, Monica articulates two key strategies.  

The first is an extension of the ‘hub and spoke’ model of clinical care, which already exists for this purpose. 

‘We are too geographically spread out to be able to have specialists with expertise in rare dementias in all areas – we need to invest in hubs, highly specialised expertise groups in maybe Melbourne or Sydney, who then have a responsibility to provide an advisory service out to the rest of the country,’ said Monica. ‘At the moment we have these hubs, but they're not mandated to support the rest of the country.’ 

‘We are too geographically spread out to be able to have specialists with expertise in rare dementias in all areas.

Secondly, she would like to see a specific peak body for young people with dementia, pointing to UK organisations Younger Dementia Network – a subsidiary of Dementia UK – and Rare Dementia Support as examples. 

Key challenge for the future

Ultimately, however policy seeks to address the challenges, it’s the small body of experts that remains the challenge. 

‘I’ve been in this space for more than 15 years now,’ said Monica, ‘and people with young onset or rare dementias tell us the problem has always been the same: no matter how many different systems have come and gone, and how much they’re getting in funding, there’s nowhere to refer to, no services that have the bespoke expertise they need. That’s the challenge.’ 

To find out more from Monica about challenges and solutions for young onset dementia care, make sure you’re at #IDC2026, 4-5 June 2026 at the Hilton, Sydney. Be the first to hear about Early Bird registrations - scroll down to sign up to our newsletter.