Is the National Disability Insurance Scheme working for younger people with dementia?

With funding from the Dementia Australia Research Foundation, Dr Monica Cations from Flinders University is leading a new two-part research project to find out if the National Disability Insurance Scheme (NDIS) is working for younger people living with dementia. This study is known as INSPIRED-II and will include Australia’s largest survey of people with younger onset dementia and their supporters to better understand how the NDIS is working (or not working) for this group, and what key gaps remain in the system. The survey is anonymous and easy to access, navigate and complete.

Key lessons from survey responses will guide better integration at the point where the disability and aged care sectors meet – a point at which people with younger onset dementia commonly report feeling they ‘fall through the cracks’. Importantly, the project aims to ensure people with younger onset dementia can access the supports they need, when they need them, in the way that they want them.

INSPIRED-II builds on the original INSPIRED study, which established that the aged care sector was not well-equipped to deliver best-practice services for people with younger onset dementia. In 2016, people with younger onset dementia became eligible to access support packages through the NDIS. Although this news was positively received by people living with younger onset dementia, no research has yet been conducted to tell us about the experiences of people with younger onset dementia in the NDIS.

Sue King was recently diagnosed with younger onset dementia, and together with her husband Michael is providing expert guidance to the INSPIRED-II project.

“The INSPIRED-II survey is an important asset for the disability and aged-care sectors,” Sue said.

“The chance to inform research on whether the needs of people with younger onset dementia are being met can only be of benefit.

“Not only confidential, it is also simple to access, navigate and complete.”

How do I get involved?

The INSPIRED-II survey is available online at tinyurl.com/inspired-survey until July 2020 and all people with younger onset dementia, their carers, families and friends are invited to have their say.

For any questions about the project, please contact study coordinator Sally Day on (02) 9351 1972 or email sally.day@flinders.edu.au

If you would like to participate in other research, please visit our website for studies that are currently recruiting participants in your state or territory: dementia.org.au/research/participate/studies

Alternatively, you can join StepUp for Dementia Research, a free service designed to connect people interested in participating in dementia research with researchers conducting studies into dementia prevention, diagnosis, treatment, care and cure: stepupfordementiaresearch.org.au