Nov 22, 2019

How do we protect the human rights of people living with dementia?


A summit in Sydney today looked at the experiences of people living with dementia in residential aged care through a human rights lens.

The summit, ‘People living with dementia, human rights and residential aged care’, arose from the research project ‘Safe and just futures for people living with dementia in residential aged care’.

The starting point of the discussion was the use of separate dementia units, locked doors, gates, and fences for people living with dementia in residential aged care.

But a range of stakeholders spoke, including care leavers, those with an interest in preventing the use of chemical restraint in aged care, advocates, and diversity advocates.

The tension in aged care between safety and freedom

Richard Fleming, psychologist and regional coordinator of mental health services SE NSW, said well-designed residential aged care facilities have a positive effect on people living with dementia. Similarly, aspects of the built environment can induce some of the problems associated with living with dementia, such as depression and anxiety.

Design principles for people living with dementia recommend ways to ‘unobtrusively reduce risks’, for example by making the garden secure, the front and side doors secure, and the bedroom windows secure.

But he said that many of the practices that were in place years ago are no longer appropriate, such as fences around aged care facilities, and we are beginning to see these changes being made.

Professor Fleming said studies have found detention to often be “informal, unregulated and unlawful”.

Professor Fleming told HelloCare that while Australia is a signatory to the United Nation’s Convention of Human Rights and has laws to protect older people, those frameworks seem often to be ignored with it comes to people living with dementia in residential aged care.

Professor Fleming said when fences are used in residential aged care, there is a “tension” between emotional and physical safety.

“Even while it is illegal to detain people with dementia against their will, and even while participants understood the negative impact of fences on the wellbeing and emotional safety of people with dementia, they accepted and supported the presence of perimeter fences because they provided the perception that fences kept people with dementia physically safe,” he said.

He said the German constitution stipulates that “All Germans enjoy freedom of movement throughout the federal territory.”

Australia does not have similar dictates in its constitution. “We haven’t taken that step… We are still grappling with that question.”

New standards a step in the right direction

But Professor Fleming said the new aged care standards are a “positive step”. 

Standard 5, the organisation’s service environment should “help consumers to move freely in the environment”.

Professor Fleming said, “Whenever we provide a safe environment, we have to do it in a sensitive dignified fashion.”

Inertia, resistance to change

“We are seeing real movement in Australia, but the inertia and resistance is real,” Professor Fleming said.

People living with dementia should just be “another person on the street”.

“There are ways to do this,” he said.

Progress on human rights is “sobering” 

Kate Swaffer, CEO and co-founder Dementia Alliance International, said hearing the stories of the morning’s sessions about infringements on the rights of people living with dementia was “sobering”.

“We all have rights and they are inalien rights,” she said.

“I heard my story time and time again.”

“I think about how long change is going to take for dementia and aged care.”

“I’m trying to think outside the box about how advocates change the way we approach advocacy,” she said. 

Segregation could attract legal action, she suggested.

The summit arose from the research project ‘Safe and just futures for people living with dementia in residential aged care’, which is funded by Dementia Australia.

The research project is led by Linda Steele, senior law lecturer University of Technology Sydney; Richard Fleming, psychologist and regional coordinator of mental health services SE NSW; Lyn Philipson, dementia fellow at the University of Wollongong; and Kate Swaffer, CEO and co-founder Dementia Alliance International.


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