System reform should mean people living with dementia are able to access services more quickly

If we can get it right for dementia, we can get it right for everyone.

We can live in a country where people living with dementia, carers, families, and friends, can find the information, support, and services they need.

But the current system is complex and a barrier for many people to access the services they need.

Today, people living with dementia and their families must navigate complicated, separate systems – My Aged Care, Carer Gateway, the National Disability Insurance Scheme (NDIS), as well as hospitals and general health care system. People impacted by dementia report that staff typically lack training and education about dementia and don’t know about the full range of services they could be accessing, especially in the lead-up to, or just after a diagnosis when they don’t yet require home or residential aged care services.

People living with dementia, of any age and in any location, deserve an easy-to-access, single point of entry to the services they need.

For the best outcome, Dementia Australia believes this should be delivered through a centralised, national telephone and online service. Expanding and more closely integrating the existing National Dementia Helpline could be one way to do this.

This system reform would mean people living with dementia are able to access services that are right for them more quickly and easily, leading to greater quality care.

Nell Hawe who at 52 was diagnosed with younger onset Alzheimer’s disease in 2020, said her diagnosis has been harrowing. 

“Experts were complacent, and they wanted to brush it off and call it stress. I went for two years before someone would even listen,” Ms Hawe said. 

“I could have been on medication during the two years. I do wonder what interventions I could have had in this time. What services and supports did I miss out on? Are my symptoms worse because of the delay in my diagnosis? 

“Neither my doctor nor the geriatrician connected me to services, I had to find these myself.

“Quality care for dementia means putting the person living with dementia first and at the centre of decision-making and their care. I do not want someone else to decide what is appropriate for me if they do not know me as a person.

“We want to be around people who are empathetic, not sympathetic. People living with dementia don’t want your sympathy. I don’t want you to feel sorry for me. I want you to walk by my side and help me decide what is appropriate for me.”

In our conversations with all levels of government, we have strongly advocated for this change, along with other solutions we believe are critical to transforming aged care. Our solution aligns with the recommendations from the Royal Commission into Aged Care Quality and Safety.

We look forward to more constructive talks with government on our solution, which was developed with extensive engagement and consultation with people with a lived experience of dementia and the health and aged care sector. 

We thank the hundreds of people impacted by dementia, and from the sector, who helped us design what we think is the best solution to delivering quality care for people living with dementia.