Theresa Flavin Dementia advocate Lived experience dementia consultant
‘It’s a really difficult subject, and it’s a big subject.’
For dementia advocate Theresa Flavin, restrictive practices in aged care are not just a policy issue – they are deeply personal, complex, and, too often, misunderstood.
Speaking at a recent Older Persons Advocacy Network (OPAN) webinar, Theresa shared her perspective as both a long‑standing dementia advocate and a person living with dementia, calling for reform to the use of restrictive practices in aged care.
Balancing safety and human rights
Internationally, restrictive practices are recognised as a human rights issue.
In aged care, they can include medication used to manage behaviour, locked doors, devices that limit movement, or even rules that prevent people from doing everyday activities they have always done.
The Aged Care Act 2024 makes clear that restrictive practices should only ever be used as a last resort, in the least restrictive way, for the shortest possible time, and proportionate to the risk. The Royal Commission into Aged Care Quality and Safety similarly set out a vision for a system where older people can live free from restrictive practices.
The Act also now embeds a Statement of Rights, affirming that older people have the same right as everyone else to make choices and take risks in their daily lives.
But despite these safeguards, questions remain about whether the current framework goes far enough.
‘Here in Australia, we’re not really tracking all that well,’ Theresa said.
‘The reason I feel that is because we have such vastly different standards and expectations around institutionalisation and restrictive practice across disability and age care.’
The added complexity of dementia
For people living with dementia, restrictive practices often sit at the intersection of care, safety, and autonomy.
Theresa said the experience can be confronting – particularly as people move into the aged care system – and raised concerns about substitute decision-making arrangements for those living with dementia.
‘It’s a really bad surprise to reach 65 in the game of life only to find out that, if you’ve got dementia, someone somewhere thinks you need to be restrained in your best interests.’
Theresa noted that a dementia diagnosis can often be misunderstood as being a good enough reason to default to a substitute decision-maker, especially for a restrictive practice authorisation.
‘Gaps in post diagnostic supports overlook behaviour support planning discussions – so many older people have not appointed a restrictive practice nominee of their choice. It’s extra tricky for us, as this appointment must be made in writing, and the appointment also has to be revoked in writing.
‘Often the need for a restrictive practice nominee comes in the later stages of dementia when the older person may have significant difficulties with writing and decision making of this nature. If no appointment is made in advance, the provider must resort to a ‘hierarchy’ that is set out in the Aged Care Rules – which set out a range of interested parties that can be invited to authorise a restrictive practice. The older person has no say in who will be selected. If that older person feels that the ‘restrictive practice substitute decision maker’ that the provider is contacting for authorisation is not acting in a way that they feel comfortable with, they have to rely on the goodwill of the provider to try and find someone else in the ‘hierarchy’, to provide or withhold that authorisation.
‘It’s not an ideal situation, but with the right supports in place, we can be supported to appoint the nominee of our choice, and that appointment in the future could be made verbally and recorded.’
Theresa also pointed to the widespread use of locked environments, particularly secure dementia units, as a form of restraint.
‘I know that the legislation says that [the use of restricted practices has] got to be for the shortest time… But you never see anyone coming back out,’ she said.
A system underpinned by constraints
Theresa believes part of the problem lies in the evidence and systems underpinning aged care.
She said much of the evidence has been developed from observing people who are in institutional environments, where the focus has been on keeping people compliant at the lowest cost – rather than improving quality of life.
Combined with funding pressures, this can drive more subtle forms of restrictive practice and a system geared toward long-term containment rather than respite, recovery, or palliative care.
‘I think we can do better,’ Theresa said.
She also highlighted concerns with the Behavioural Resource Utilisation Assessment – the tool used to determine how much funding a provider receives based on a person’s behaviour and care needs.
Theresa argues it is not fit for purpose and contributes to a system where restrictive practices can become a form of control or behaviour suppression.
Signs of progress – and the reforms still needed
Despite her concerns, Theresa acknowledged there are steps in the right direction.
Supported decision-making provisions in the new Act are a strong foundation, she said.
‘Those provisions extend to behaviour support planning, so that expectation is now set that people in residential age care are supported to contribute to and really have an ownership of their own behaviour support planning,’ she said.
‘That, to me, is a very empowering thing.’
But more must be done, she said. This includes strengthening person-led, evidence-based approaches and aligning aged care more closely with the disability sector, particularly through mandatory positive behaviour support planning.
Short-term, targeted intervention programs for people with higher needs, and a stronger focus on respite, restorative care, and palliative support, are also needed.
Theresa believes Australia should revisit Recommendation 15 of the Aged Care Royal Commission – the proposed dementia support pathway – to ensure access to structured behaviour support planning, palliative care planning and more appropriate short term care options.
‘I would love to see Australia partnering with people in early-stage dementia to develop a balanced, person-led set of evidence that will take us into a new and better future,’ she said.
Ultimately, Theresa believes reform requires a broader reflection from society.
‘There’s so much that we can do to make this a less horrific experience. But we really have to examine what we’re going to accept as a society if we’re going to move forward.’
Find out more
You can hear more from Theresa Flavin, including practical insights on restrictive practices and dementia care, by watching the full OPAN webinar replay.