Removing barriers to care for young onset dementia

Dementia is a disease most of us associate with old age – but for some people, it strikes far earlier.
 
‘YOD [youth onset dementia], or dementia with onset prior to 65 years of age, affects approximately 25,000 Australians and makes up 10% of all people diagnosed with dementia,’ Dr Wendy Kelso, clinical neuropsychologist at the Royal Melbourne Hospital, told newsGP.
 
The implications of YOD are very serious, for both the person experiencing it and their families.
 
‘YOD is a life-limiting illness, with up to 20 years of life lost with multiple and complex presenting features requiring specific expertise for diagnosis and care,’ Dr Kelso said.
 
‘People living with YOD and their families face hurdles at all stages, including navigating employment, caring for school-age children, financial and psychological stress, grief, and the prospect of facing a life-limiting, possibly hereditary illness.
 
‘Individuals with YOD have markedly increased rates of anxiety and depression, and significant reductions in quality of life. The burden is unrelenting throughout the illness and made harder by the lack of age-specific services – for example, approximately 1900 young Australians with dementia reside in residential aged care facilities due to a lack of age-appropriate accommodation.’
 
But despite the challenges of living with YOD, the first and most significant challenge people often face is simply receiving a diagnosis; Dr Kelso explains that before patients attended the Melbourne Young Onset Dementia Service, they experienced a mean duration of symptoms of 5.6 years and a mean diagnostic delay of 2.9 years, with an average number of 4.8 specialist assessments.
 
Families often waited up to five years to receive an accurate diagnosis, and this wait can have a serious impact on patients’, and their families’, lives.
 
‘A delay in diagnosis can have wide-ranging consequences, including loss of employment and entitlements, increased carer burden, marital breakdown and significant psychological difficulties for affected children,’ Dr Kelso said.
 
‘The average life expectancy from onset of symptoms for YOD ranges from 1.3 years to 7.9 years.
Given a diagnostic delay of over four years, diagnosis is often made when there are few quality years left for the patient and their carer.’
 

The BRIGHT-YOD project team (L–R): Project Administrator, Melinda Sorraghan; Clinical Neuropsychologist, Dr Wendy Kelso; Project Manager, Stefanie Colella; Clinical  Neuropsychiatrist, Dr Sarah Farrand; Director, Neuropsychiatry Unit, RMH, Professor Dennis Velakoulis.

One of the reasons diagnosis can take so long is that many people – sometimes including medical professionals – simply don’t expect or anticipate dementia as a factor at younger ages.
 
Dr Kelso believes GPs have a crucial role in timely diagnosis of YOD and wants to highlight important signs of which they should be aware.
 
‘While not common, YOD is one of the causes of changes to cognition, emotion and behaviour in younger people and is often misdiagnosed as stress or depression,’ she said.
 
‘Early signs may include change in personality and behaviour, or cognitive problems with functional decline not in keeping with the degree of mental illness, if present.
 
‘If there is a family history of dementia, in particular onset under 65 years, this should raise suspicion further.’
 
While living with YOD can be a struggle for all patients, it can be particularly difficult for those who live further from the cities, even once the diagnosis has been made.
 
‘Patients in remote rural areas often do not have access to health practitioners with expertise in YOD, due to limitations in staff recruitment, retention and training,’ Dr Kelso said.
 
‘YOD support services, such as Dementia Australia and Huntington’s Victoria, facilitate diagnostic referral; however, they often face barriers when trying to organise assessment and review for rural and regional patients.’
 
Dr Kelso has also seen the struggle for access in her work at the Royal Melbourne Hospital.
 
‘The Neuropsychiatry Unit has approximately 750 outpatient appointments per year, and 40% of our patients live in rural or remote areas,’ she said.
 
‘It costs an average of $631 one-way for a person who lives more than 100 km from hospital to attend the clinic, including lost opportunity costs.’
 
These circumstances led to the development of the ‘Bridging gaps in health using telepsychiatry for young onset dementia’ project, or BRIGHT-YOD, a collaboration between the Neuropsychiatry Unit at Royal Melbourne Hospital, NorthWestern Mental Health and Melbourne Young Onset Dementia Service, led by Dr Wendy Kelso and neuropsychiatrist Dr Sarah Farrand and funded by Better Care Victoria.
 
‘BRIGHT- YOD is an innovative telehealth project designed to improve access to diagnosis and care for those with possible YOD, while reducing costs associated with accessing specialist clinics,’ Dr Kelso explains.
 
As awareness of YOD has grown in the general population, Cognitive Dementia and Memory Services (CDAMSs) across Victoria have been receiving increased referrals for patients aged under 65 years.
 
The aim of BRIGHT-YOD is to enhance referral pathways between CDAMSs, services such as Dementia Australia and the Royal Melbourne Hospital, and increase the use of telehealth to remove barriers to treatment and assessment such as mobility, cost and distance.
 
The project, which is currently slated to run for 18 months, is partnered with three rural CDAMS clinics in Ballarat, Goulburn Valley and Albury–Wodonga, a city clinic in Royal Park, and support services Dementia Australia
and Huntington’s Victoria.
 
While BRIGHT-YOD is designed to run for 18 months, the project team believe it has scope for wider scalability across all mental health services and CDAMSs across Victoria, and perhaps even nationwide.
 
Dr Kelso is also hopeful it will change the way the Royal Melbourne Hospital provides its dementia services, to the benefit of those living with the disease.
 
‘As part of the project, we are required to lead a service innovation project and create a cultural change in the way we approach clinical service provision across our inpatient and outpatient clinics,’ she said.
 
‘This service aims to improve the health outcomes and quality of life for people living with YOD.’
 
Services that can be offered through the project include:

• neuropsychiatric assessment
• neuropsychological assessment
• primary or secondary consultations
• second opinions
• attendance at multidisciplinary meetings
• educational seminars
• involvement in carer/patient support
• video interpreting services.

dementia rural and remote health telehealth young onset dementia