Young onset dementia (YOD) is a term describing any form of dementia diagnosed in people under 65 years of age.
Little is known about why it occurs among this age group, and, as it is less common, it can be hard to diagnose. However, we know that it affects approximately 26,000 Australians in their 50s, 40s and even as early as their 30s.
The dearth of knowledge about young onset dementia is contributing to a care and services gap. In an attempt to address this, Flinders University researcher Dr Monica Cations has been awarded $75,000 as part of Dementia Australia’s 2018 Dementia Grants Program.
“What we know at the moment from the past decade or so of research is that young people with dementia are quite unique. And their needs are quite unique,” Cations tells Aged Care Insite.
“[In some cases] they have young families. They have a mortgage. They’re at the peak of their career. Also, they’re usually physically quite fit and agile. And they have different interests than those of people who are 20 or 30 years older than them.”
Cations says that as the care for people with YOD has moved to the NDIS, things have improved, and the care becomes more individualised.
Still, little is known about how they navigate these systems.
“The problem that we have at the moment is that the disability sector has no experience with dementia. They’ve never serviced this population before.
“So what we’re finding is that lack of knowledge is getting in the way of people with the onset dementia and their care in getting the kinds of support that they need,” she said.
Cations’ study plans to track people from the point of diagnosis and, over time, try to understand what their experiences of the NDIS are, good and bad.
“We’re also hoping to develop some education resources and supports for the disability workforce to upskill them.
“Another part of our research involves looking at risk factors for young onset dementia, so not only support services for when people do develop dementia in early age, but also how can we prevent that from happening in the first place? How can we delay that to later in life?
“The kinds of things that we found are important are not drinking too much alcohol, and being actively engaged in social and cognitive activities throughout the lifespan.”
Cations aims to work across the health spectrum to engage with people with YOD for her study and credits someone diagnosed with YOD, Ian Gladstone, with helping to push the research forward and being a key reason that younger people with dementia are on the NDIS.
“He was diagnosed with dementia when he was in his late 50s and I met him many years ago when I was working at Alzheimer’s Australia. He was sort of a service user when I worked there. He’s since become very involved with advocacy programs.”
“He’s been really invaluable in pointing us in the right direction towards, ‘Okay, what’s actually important to people living with dementia? And what kind of research should we be doing to actually make a difference for his group?’
“He’s experienced so many services where he was sitting in with people decades older than him. And he really felt that that was inappropriate, and so he and a lot of other people with dementia advocated really strongly for their inclusion in the NDIS.”
To Cations’ knowledge this is the first study of its kind looking and implementation and improving services.
“There’s been this real tendency to just collect a lot of information and learn things rather than actually go out and try to change things.”
“So, I think that’s a really exciting thing about this project,” she said.Do you have an idea for a story?
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