Researchers from the º£½ÇÉäÇø (UC) say those who develop dementia symptoms before 65 are missing out on the support they need.
In Australia, it is estimated 29,500 people are currently living with young onset dementia (YOD) – a number expected to grow to 41,000 by 2054.
“The needs of those with a young onset dementia diagnosis cut across health, disability, aged care and employment, and no single system is built around them,” said Nic Lawlis, Postdoctoral Fellow at the º£½ÇÉäÇø’s Centre for Ageing Research and Translation (CARAT). “The people working on these problems, from researchers and clinicians to policy makers and people with lived experience, rarely end up in the same room.”
The upcoming Australian Young Onset Dementia Conference, hosted by CARAT and the UC Research Institute for Sport and Exercise (UCRISE) intends to change that.
“People living with young onset dementia (YOD) and their families are at the centre of the conference program. They are not an afterthought, because they know better than anyone where the system works and where it lets them down.”
The conference will be held on Friday 20 November at the Ann Harding Conference Centre and bring together leading international experts including Professor Mary Pat Sullivan from Nipissing University in Canada; Carola Renders, Director of the Netherlands’ Young Onset Dementia Knowledge Centre; Associate Professor Samantha Loi from the University of Melbourne and Royal Melbourne Hospital, and representatives from the Australian Institute of Health and Welfare, Dementia Australia and Young Dementia Australia.
Associate Professor Nathan D’Cunha, Dementia and Cognition Theme Lead at CARAT said the goal was for every delegate to leave with practical ideas they can take back to their clinics, services and organisations, as well as new connections.
“Our speakers will tackle two of the biggest issues for younger people with dementia: how long it takes to get a diagnosis, and what support is available afterwards. They will compare how Australia and other countries approach these challenges, and what we can learn from each other,” he said.
Young onset dementia is any form of dementia where symptoms begin in someone under the age of 65, and often arrives while the person is still working, raising children, or paying off a mortgage. A diagnosis at this stage can mean the loss of a job and income, financial strain, and grief as a whole family suddenly needs to reorganise their life.
Getting a diagnosis also takes longer.
Research shows it takes an average of around 4.4 years for younger people, compared with 2.8 years for people diagnosed later in life.
Vicki Barry, from the Young Onset Dementia (WA) Impact Network, knows all too well the lengthy journey it takes. She has been the care partner for her husband since 2010, but had a five-year battle to get his diagnosis.
“Sixteen years down the track, I can say living with young onset dementia as a care partner is overwhelming and exhausting,” Ms Barry said.
“Like most people, I thought dementia was reserved for the aged and frail. I had never heard of young onset dementia. When I went to my husband’s GP seeking support and advice, sadly, I was dismissed and told that if he had an issue, he should come and see him – ‘go home and be a good wife’ he said. I was stunned. I realised I was on my own.
“Fortunately, I have a working career in health, a questioning mind, and good help-seeking skills. But it still took five years to get a diagnosis. No one should have to wait that long.”
Ms Barry hopes the conference will help to make YOD understood as a neurological condition and entity in its own right; and for the impacts of people living with the disease to be recognised, acknowledged and not conflated with older onset dementia.
“It’s an opportunity for healthcare professionals, service providers and people with lived experience of young onset dementia to get a shared understanding of what’s working and what’s not working across the systems of care and support,” she said.
“By sharing their perspectives and insights, we can get a sense of how best to shape the systems to improve the experience of those living with young onset dementia, to do more of what works and address the pain points and gaps in the system. There’s a lot of good work going on that needs to be shared, leveraged and replicated where appropriate.”
For the researchers involved, they want to shorten the length of time new research findings take to be put into widespread practice – something which currently takes around 17 years.
“The evidence is growing. We know that staying physically active, connecting with peers, and getting coordinated support straight after diagnosis can make a real difference to how people live with dementia. But these supports are still not routinely offered to people with young onset dementia in Australia, or they depend on where you live and who you happen to see,” Mr Lawlis said.
“Bridging the gap means researchers listening to what clinicians and families need, and clinicians and services having the evidence in a form they can use. It also means policy makers hearing directly from both. That is exactly the mix of people we are bringing together at this conference.”