When Justine Lang's mother was diagnosed with dementia she did not anticipate how hard it would be to find effective treatment and care for her.
Ms Lang and her mother, Robyn, live at Umina Beach on the New South Wales Central Coast.
She said it took more than 12 months to find a health practitioner who would prescribe her mother medication to treat her condition.
"We weren't asking for a miracle drug," she said.
"Just something where she could have a good quality of life. That's the only thing we were after."
Ms Lang said her mother had started to become more introverted and isolated after her diagnosis.
That all changed when they found a doctor who prescribed Robyn a drug called Aricept or Donepzeil, which can help alleviate some of the symptoms associated with Alzheimer's, such as confusion.
"Oh my gosh, it was a huge improvement," she said.
"Now, she wants to do things, she wants to meet people and she's quite social."
Regulations introduced after royal commission
New national regulations to crack down on the abuse of restrictive practices were introduced in 2021, after the Royal Commission into Aged Care Quality and Safety delivered its findings.
A royal commission was announced in 2018 after the ABC exposed systemic issues in the sector, with ongoing coverage revealing neglect of dementia patients and the abuse of physical and chemical restraints.
The new regulations require aged care providers to satisfy a number of conditions, including informed consent and assessments by an approved health or medical practitioner, before restraints can be used.
Dementia Australia defines a "chemical restraint" as medication used to control a person's movement or decision-making capacity, and include anti-depressants, mood stabilisers and antipsychotics.
Robyn's geriatrician, Peter Lipski, said while Aricept is not considered a chemical restraint, many doctors have become reluctant to prescribe it and other medications because of general "concern" and confusion around the use of many medications to treat dementia.
"The restrictions are so severe now and so intimidating for doctors that they won't use these drugs," Dr Lipski told ABC Central Coast Breakfast.
"I'm seeing huge numbers of patients with under-treated pain because this restrictive practice frightens doctors in even giving morphine in low doses or giving out pain patches."
The ABC spoke to five different GPs who agreed it had been more challenging to prescribe medication to older patients since the royal commission.
"The red tape and the paperwork around prescribing now as a GP for my patients in aged care is much more difficult," Central Coast GP Catherine Palmqvist said.
"It's gone too far and it's not necessarily the best outcomes for patients."
Dr Palmqvist said she would like the national regulations to be reviewed to determine whether they are working.
In a statement, the Aged Care Quality and Safety Commissioner Janet Anderson said the regulations support the lawful use of restrictive practices if all other options had been exhausted.
"The commission continues to develop and promulgate a range of information, guidance and education ... regarding the legal provisions surrounding the use of restrictive practices," she said.
Ms Anderson said the commission constantly monitored and responded to risks and identifying areas for improvement, including "ongoing engagement with general practitioners and nurse practitioners, prescribers and providers".
Kaele Stokes from Dementia Australia says the regulations are in place to ensure "restrictive" measures are used as a last resort.
"We're not advocating for a complete elimination of medications," she said.
"But what we also need to see is that there are non-pharmacological interventions and ways of engaging with people living with dementia."
'Better training needed'
According to Dementia Australia, it is not currently mandatory for people working in aged care to have dementia training.
Dr Stokes believes that needs to change.
"It's really the only way that we're going to see a significant shift in practice," she said.
"Not only do we need to have new staff coming in, but we also need those staff to be equipped with the skills and the ability to understand how to support people living with dementia."
The Department of Health and Aged Care says it is developing new requirements for dementia training in aged care.
It pointed to strengthened Aged Care Quality Standards which contain "specific expectations that all workers receive competency-based training for caring for people living with dementia".
"The strengthened quality standards are currently being piloted by the Aged Care Quality and Safety Commission," a spokesperson said.
The department also said more than $74 million has been allocated to Dementia Australia to roll out its national training program over the next four years.
This year's federal budget committed $36.03 billion for 2023-24 to aged care to boost wages and working conditions.
