A new investigation has found Australians recently diagnosed with young-onset dementia (YOD) are struggling to get established in the disability sector.

The study, just published in the Australian and New Zealand Journal of Psychiatry, found the National Disability Insurance Scheme (NDIS) workforce has relatively low levels of experience with dementia, leaving the 27,000 younger Australians with dementia (with onset prior to 65 years) vulnerable to missing out on the essential services that they need.

Flinders University and UNSW Sydney researchers evaluated 151 Australians living with YOD and their care partners who recently entered the disability system.

“This is the first data about the experiences of people with young onset dementia and their families since they were included as eligible in the NDIS,” says lead author Dr Monica Cations, from Flinders University.

Participants had a mean age at symptom onset of 55 years. In all, 53% were diagnosed with Alzheimer’s disease and 25% were diagnosed with frontotemporal dementia.

• Of these 60% had received an approved plan from the National Disability Insurance Scheme, with 3% rejected.
• More than 27% waited longer than six months to receive their plan, and half waited at least a month post-approval to access services.
• Less than 30% agreed that the NDIS understands dementia, and fewer than half felt that the process of accessing NDIS funding is easy and fast enough.

“This is a very vulnerable group of people who are seeking long-term support from NDIS services to allow them to remain independent and well for as long as possible.

“Despite the barriers, the respondents were overwhelmingly in favour of young-onset dementia services remaining in the disability system rather than the aged care,” Dr Cations says.

“The NDIS is the right system for people with young-onset dementia, but more time and resources are required to get it right. The proposed introduction of Independent Assessments will likely make it even more difficult for people with rare diseases like young- onset dementia to get the services that they need.”

In light of systematic barriers to best practice for this group in aged care, the study sought to examine experiences and satisfaction with this experience with available disability services – and identify strategies for service and system improvements.

As well as more knowledge and understanding of young-onset dementia among NDIS staff and disability providers, recipients called for faster access to funding after application and increased accessibility of tailored services for this group or other conditions less frequently encountered.

“Research examining the impacts of COVID-19 for people with YOD and their care partners will be important for establishing the tailored response required for this group,” the paper concludes.

“In addition, research is needed to better understand the experiences of groups facing intersecting marginalisation, including people with YOD living in residential aged care or supported disability accommodation, and Aboriginal and Torres Strait Islander people living with YOD”.

The article, Post-diagnosis young-onset dementia care in the National Disability Insurance Scheme (2021) by M Cations, S Day, K Laver, A Withall and B Draper has been published in the Australian and New Zealand Journal of Psychiatry DOI: 10.1177/00048674211011699

This research was funded by a Dementia Australia Research Foundation project grant.