Project to help providers implement rights-based Act

The University of New South Wales is partnering with Brightwater Care Group, BaptistCare and the Older Persons Advocacy Network on a new initiative aimed at reshaping decision-making in aged care.

Led by Dr Craig Sinclair from the UNSW School of Psychology, the project aims to support providers to enact requirements from the new Aged Care Act and the Strengthened Aged Care Quality Standards. Dr Sinclair is also a senior researcher at Neuroscience Research Australia.

These changes – which come into effect on 1 November – include:

• the introduction of a new statement of a person’s right to independence, choice, quality care, privacy, and staying socially connected
• introduction of higher standards of care, and higher penalties if they’re not met
• whistleblower protections.

“Moving an aged care sector that provides care for 1.3 million people to a rights-based model is a big task,” Dr Sinclair said.

“We’re shifting from a risk-averse, substitute decision-making model to supported decision-making, where people should be assisted and guided, not overridden.”

Dr Sinclair has had a long interest in finding better ways to support older adults in making decisions about their lives, writing about advantages of the will and preference concept for Australian Ageing Agenda earlier this year.

The project is co-designed by researchers, providers and the people who will be using the services. Dementia and aged care advocate Theresa Flavin – who was diagnosed with younger onset dementia – is a lived experience participant.

“In research, older people and those with dementia were kept at arm’s length,” she said. “It felt like the system was built around us, not for us.”

“True co-design means working with the end users,” she added. “Many projects miss this, consulting stakeholders who aren’t the actual users; a lot of the time, the words of the person with dementia are treated as a superficial add-on.

“I think it’s deeply, deeply unfair to just mine us and discard us, our society is already doing that, and social science needs to lift their game.”

In her role as chief investigator, Ms Flavin will co-lead a group of working people who have lived experience of dementia and those who use aged care. Together, they will draw on their experiences to refine training resources for aged care staff.

The resources developed through the project will then be tested through a controlled trial and interviews with staff and aged care residents.

“This group is our laboratory,” said Dr Sinclair. “Theresa and the working group hold us accountable, ensuring our work is genuinely shaped by people with lived experiences.”

“It’s about enabling people to live well with dementia, not just keeping them safe,” he said.

Ms Flavin added that people can’t claim a right they don’t know they have and that teaching aged care workers is crucial, as they will pass the knowledge on to older people and their families.

“Families will realise they can’t just make decisions for their parents. That’s a tremendous change,” she said.