Some 29,000 Australians are living with younger onset dementia, while their families and carers wrestle with a disability care system that constantly fails to meet their needs. 

Luke Campbell has struggled with the system since his partner Lisa began manifesting symptoms of the condition eight years ago, at age 43. 

At International Dementia Conference 2024 in Sydney on September 5-6 Luke will make the case for urgently reforming the way the National Disability Insurance Scheme deals with people living with younger onset dementia (YOD) and their families. 

He also calls for better awareness and training for general practitioners in providing post-diagnosis support for the condition. 

“For me it’s becoming more and more clear that the starting point is with GPs, their understanding of the condition and awareness to guide people directly to the right services for them,” says Luke.  

It wasn’t until 4 years after Luke and their 3 young children began experiencing Lisa’s behavioural changes that she was finally diagnosed with YOD.  

After the diagnosis, Luke says, he was given “a whole bunch of pamphlets” but no treatment plan, nor even a list of care providers he could contact for help in caring for Lisa and navigating their way through a complex and unresponsive system. 

Lisa’s three earliest NDIS support coordinators “were further behind than I was” in understanding her needs, says Luke. There was a similar early turnover of her GPs and occupational therapists.  

As her YOD advanced, Lisa was unable to remain at home and at one stage she was placed in an aged care home, against Luke’s objections and although that was completely unsuitable for her condition and treatment. 

Only when Luke found a support coordinator and an occupational therapist who were knowledgeable about specialist services available for Lisa were they able to get her out of aged care and into specialised disability accommodation. 

Luke says the disability care system has improved somewhat in dealing with YOD but still requires lengthy and difficult processes – taking years in Lisa’s case – to provide adequate care and treatment. 

“It’s why I am passionate about finding the connecting point between diagnosis and service enablement,” says Luke, who left his banking job to become primary carer for their family and is now studying for a Bachelor of Health Sciences degree.  

What makes this systemic failure even more frustrating to Luke is that the NDIS has established a ‘fast pathway’ from diagnosis to service enablement for people with motor neurone disease.  

Those best practices for people with MND must be adopted for younger onset dementia and other conditions, he says.  

International Dementia Conference is a biennial global event, bringing together in Sydney international experts, health care leaders and practitioners and people with lived experience, to discuss the latest insights and developments in complex dementia treatment, palliative care and positive ageing.

IDC2024 is being run by The Dementia Centre, which over almost 30 years has provided world-leading research, consultancy and education in the field of dementia care.