Dementia seen but not yet heard

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People living with dementia have yet to hear from the Federal Government that dementia will be a core focus of the reform of the aged care system.

At a Parliamentary Friends of Dementia event today in Parliament House, Canberra, Maree McCabe, CEO Dementia Australia, called on all parliamentarians to elevate dementia as a priority when addressing the recommendations in the Royal Commission into Aged Care Quality and Safety’s Final Report.

“With 472,000 Australians living with dementia, 70 per cent of them living in the community and of those in residential aged care 70 per cent having a moderate to severe form of cognitive impairment, there needs to be a significant commitment to dementia care made by the Federal Government in words and in action,” Ms McCabe said.

“The frustrations and fears felt by people living with dementia and carers are valid. They have contributed in good faith, for many years to reviews and enquiries and now have entrusted their lived experience expertise to the Royal Commission,” Ms McCabe said.

“Dementia is a progressive, terminal disease. People living with dementia cannot put their symptoms on pause while waiting for change.

“They are devastated that to date little action has been taken.”

Dementia Advocates addressed the audience of members of parliament and aged and health care leaders.

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. 

“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,” Ms Hawe said.

Keith Davies, carer for his wife, said abuse and neglect were some of the most disappointing and frightening  findings to come out of the Royal Commission into Aged Care. 

“We will all  be old someday, some of us are already there. We may need to be cared for and would like to think we would be cared for properly,” Mr Davies said. 

Peter Swindell, carer for his wife, said quality care will only be achieved through a person-centred focus… and a requirement for mandated levels of education and training including compulsory dementia components. 

Dementia Australia has provided the federal government with a clear plan on what is needed to deliver quality dementia care in preparation for the May budget – this includes:

1. Dementia Support Pathways: An integrated and specialist service response with a single access point, that is a centralised, national telephone and online service that sits alongside My Aged Care.
2. Transformed Dementia Workforce Capability: An integrated approach to build dementia capability and expertise of the aged care workforce by mandating minimum levels of dementia education. Developing dementia practice leaders will support the application of this learning as well as promote practice change. This will ensure the aged care workforce has the necessary skills, knowledge and capability to provide quality care and support to people living with dementia.
3. Dementia-Friendly Design: Developing and embedding a set of robust, evidence-based and practice-informed dementia-friendly standards. This will enable physical environments that support people living with dementia to be as independent as possible.

“Now the final report and recommendations by the Royal Commission have been released the government have all they need to seize this once in a generation opportunity to transform dementia care and the aged care system overall,” Ms McCabe said. 

“There is no more time for delay. They must act now.”

To read and download Dementia Australia’s Roadmap to Quality Dementia Care please visit

Dementia Australia is the source of trusted information, education and services for the estimated half a million Australians living with dementia, and the almost 1.6 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you.

For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available and the Helpline is open 8am to 8pm Monday to Friday excluding public holidays. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit 


Media contacts: Christine Bolt 0400 004 553 | [email protected]; Barry Wallett 0411 278 612 | [email protected] 

When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.