A Royal Melbourne Hospital-led telehealth project have been helping people with young-onset dementia (YOD) “live well” with the condition.
BRIGHT-YOD (Bridging Gaps in Health using Telepsychiatry for Young Onset Dementia), a telehealth project for people living with YOD, has been seen as a “Godsend” for husband and wife Kerin and Karen, who faced several challenges following Kerin’s diagnosis of YOD in their hometown, a rural area two hours’ drive from Melbourne.
“When Kerin was diagnosed with young-onset dementia, we were told ‘there was nothing more that could be done – to sort out your affairs and tick off your bucket list,” Karen said.
“But Kerin was only 57 and still employed as a full-time deputy Principal. As far as we were concerned, Kerin had issues but he was still coping.”
Kerin said the most heartbreaking aspect of diagnosis as that rather than focus on retaining skills, the traditional system focuses on treatment through a disability and deficit model.
“The doctors didn’t want to help me – suddenly you go from a healthy adult to not worthy or worthwhile of support.”
“Your dignity gets taken away from you.”
There are approximately 6213 people living with YOD in Victoria, however estimates suggest that less than half of these will access YOD specialist services. Reasons for this include limited accessibility to services, lack of appropriate services for younger people, as well as a community awareness and stigma about getting help for the condition.
A lack of access to YOD support services could be a reason why individuals with YOD report markedly increased rates of anxiety and depression and significant reductions in quality of life. This is also true for carers like Karen.
More broadly, people with dementia are more than three times likely to not have a friend to confide in compared to the general public, as they often shut themselves off due to a lack of support.
From Karen and Kerin’s experience, they simply weren’t aware of the services available to mobilise and improve Kerin’s quality of life.
“We learnt about the BRIGHT-YOD project through friends of ours, and honestly it’s been a Godsend,” Karen said.
“Before BRIGHT-YOD we thought we were in a hopeless situation and were just surviving day-to-day. BRIGHT-YOD helped us to live, navigate a medical system that’s daunting, and suggest services that will help us live well.”
Dr Sarah Farrand, BRIGHT-YOD Clinical Lead and Consultant Neuropsychiatrist at the Neuropsychiatry Unit, Royal Melbourne Hospital, said most of the frustration with YOD stems from navigating a system designed for people with older-age dementia.
“These people are in a pretty dire situation – for example, trying to access super early, or getting a disability support pension, but having trouble doing so, because they are so young.”
“There’s a lot of scepticism in these industries because dementia is traditionally seen as an ‘older’ condition. So I’ve had to fill out medical certificates to insurance companies every three months to prove that a person is not going to get better. This causes a lot of stress for the family.”
Kerin said that he’s doing “great” since BRIGHT-YOD, and even was able to participate in a research project with the University of Melbourne, Vision Australia and Dementia Australia, where he was given an assistance dog, Roger, to support him on his YOD journey.
“The best thing about Roger is that everyone wants to pat a dog and everyone says g’day. You meet so many people in the town and it’s great, as
without him I would have probably be made to sit in a chair and look out the window,” Kerin said.
“If I go down to the shops and forget my wallet, that’s okay, because they know Rogie and me now, so they give me an IOU”
“The whole experience has been a great thing for Rogie and a great thing for me.”
Since the BRIGHT-YOD project went live in April 2019, there have been 43 people seen (with over 100 appointments) as part of the pilot implementation, more than 35,000km saved for clients and their families, and over five tonnes of carbon emissions saved.
While BRIGHT-YOD is designed to run for 18 months, the project team believe it has scope for wider scalability.
Karen would love to see the project extend across Victoria, even nationwide.
“BRIGHT-YOD has been the best thing for us, so that’s why we’re so passionate about the telehealth project and we’re passionate about rural people getting access to this project.”
BRIGHT-YOD is funded and supported by Better Care Victoria, a branch of the Department of Health's Safer Care Victoria.