Dementia action now – call to address recommendations

The Royal Commission identified dementia as a core focus of the reform of Australia’s aged care system, but what’s it going to do?

Key Points

  • 472,000 Australians live with dementia
  • Royal Commission found 14 key areas needing action
  • Dementia Australia calls on the federal government to act

That’s the understandable question being asked by dementia advocacy and education organisation, Dementia Australia.

At a Parliamentary Friends of Dementia event recently held at Parliament House in Canberra, Dementia Australia CEO Maree McCabe called on politicians to prioritise dementia when addressing recommendations in the Royal Commission into Aged Care Quality and Safety’s Final Report.

“With 472,000 Australians living with dementia, 70% of them living in the community and of those in residential aged care 70% 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 inquiries and now have entrusted their lived experience expertise to the Royal Commission.

“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.”

“Within the 148 recommendations are 14 key areas with a specific focus on dementia. We welcome these recommendations and now call on the federal government to demonstrate they are serious about making quality dementia care core business for aged care in Australia,” Ms McCabe said.

Recommendations broadly cover the need for clearer support pathways; assessing the impact of dementia-specialist support; introducing new regulations on chemical and physical restraint; calling for a review of aged care standards as they relate to quality dementia care; fast-tracking a national aged care worker registration program and specifying that, as a condition of approval of aged care providers; and all workers engaged by providers who are involved in direct contact with people seeking or receiving services in the aged care system undertake regular training about dementia care.

Other recommendations focus on the importance of carers, the impact of quality indicators and a need to clarify roles and responsibilities across the sector.

Ms McCabe adds, "If you get dementia care right you get it right for everyone.”

Dementia Australia says it has provided the federal government with a plan on what is needed to deliver quality dementia care and to respond to the Final Report:

  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.

“We urge the government to demonstrate their commitment to the 472,000 Australians living with dementia and the 1.6 million people involved in their care,” Ms McCabe said.

Nell’s story

Nell Hawe, who was diagnosed with younger onset Alzheimer’s disease last year at age 52, said her diagnosis was harrowing.

Talking to the Australian Nursing and Midwifery Journal, Ms Hawe said experts were initially complacent and brushed her concerns off as stress. Two years passed before anyone would listen.

“I could have been on medication during the two years,” she said.

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

Nell said neither her doctor, nor geriatrician, connected her to services. Instead, she had to find them herself.

“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.”

Dementia Australia’s Roadmap to Quality Dementia Care can be downloaded here.

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