An 18-month long telehealth project led by Royal Melbourne Hospital has been helping people with young-onset dementia since the program went live in April.
The Neuropsychiatry Unit is a statewide inpatient and outpatient service based at the Royal Melbourne Hospital, and runs the Melbourne Young Onset Dementia Service.
The unit sees approximately 100 inpatients per year, and offer approximately 1000 outpatient appointments per year, and was recently funded by Better Care Victoria, part of the Department of Health to run an innovation program via telehealth aiming to improve access and reduce costs for patients to engage in specialist assessment and care for YOD.
Dr. Sarah Farrand, BRIGHT-YOD clinical lead and consultant neuropsychiatrist at the Neuropsychiatry Unit at Royal Melbourne Hospital, noted services for YOD differ significantly from those with older age dementia.
"Patients with YOD are more likely to have young children, and higher rates of genetic burden, which requires certain counseling and care," she explained. "They are often under significant financial strain, as they have had to unexpectedly stop working when at the peak of their career, and this places significant pressure on their partner to balance their role as primary breadwinner with being a carer."
The telehealth program works as follows: A patient is referred to the service, telehealth is offered and if the patient would prefer to undergo their assessment via telehealth, then this is set up by our admin staff with the patient, or their local health service if they need help with the technology.
It is browser-based software, using the Coviu platform, so it can be accessed from anywhere and can be accessed on mobile devices and smartphones.
Dr. Farrand note that while it is possible to conduct the assessments via phone, generally an iPad-sized screen or larger is preferable.
The patient would then undergo an initial 1.5 hour assessment with a neuropsychiatrist, including cognitive screening and modified neurological examination, and then if required further tests would be ordered, including blood tests and brain scans.
If a referral to a neuropsychologist is required for further assessment of cognition, this can also be undertaken via telehealth technology, and once the assessment process is complete, feedback is given to the patient and their family and health professionals – again, this can be via telehealth or face-to-face as preferred.
"Telehealth has great potential to enable those with YOD to access services," Dr. Farrand said. "To date there have been 44 patients linked with the service, with over 35,000 kilometers saved for patients."
The program has been rolled out in Victoria, which is one of the smaller states in Australia, and she noted even in Victoria there are significant issues with access for patients.
"Thus there is likely to be further applicability to expand to become a nationwide service and centre of excellence in young onset dementia diagnosis and care," she explained. "There is exciting applicability and interest from patients and carers to provide education and support groups, that can be tailored to people's needs."