Glenda Parkin was 56 when she was diagnosed with younger-onset dementia, a rare visual variant of Alzheimer’s disease known as posterior cortical atrophy. She became functionally blind and her ability to perceive the world around her gradually deteriorated.
While the diagnosis forced Parkin to retire at the zenith of her career as a school principal in Perth, losing her abilities to read and write alongside other basic capabilities, she carried on a fulfilling life, according to her husband, Bronte, her carer for 10 years.
The couple travelled together, with Glenda “effectively seeing the world through my eyes”, he said. She continued to pursue her love of music as a member of a community choir and took on new challenges, becoming a dementia advocate.
However, Glenda’s quality of life took a turn for the worse when in 2020 the couple sought their medical team’s help for Glenda’s changing behaviour and sleeplessness. She was prescribed quetiapine, an antipsychotic medicine.
The previous year she had also been prescribed a sedative, lorazepam, to treat anxiety, agitation, restlessness, aggression and occasionally delusional behaviour – common in people with dementia.
Not long after starting on quetiapine, Glenda began to experience unusual muscular movements in her legs and lose her balance. One evening as Bronte was cooking, she toppled over on the hard timber floor of their home, fracturing her pelvic bones.
“It was only in the hospital we found out that the leg movements were caused by the medicines,” Bronte said.
The hospital psychiatrist explained that Glenda’s leg movement disorder was a side-effect of the quetiapine – something that had not been discussed as a risk when it was prescribed – and he recommended that both medications be slowly phased out.
Although her pelvic bones eventually healed, Glenda never regained the ability to walk, making it impossible for Bronte to care for her in their home. She was admitted to an aged care home where for the first six months she was confined to bed 24 hours a day because putting her into a nursing chair was too risky. She remained there until she died in 2023.
‘A new standard’
The Australian Commission on Safety and Quality in Health Care is warning people with intellectual disabilities, autism, dementia and other neurodevelopmental conditions are being overprescribed psychotropic medicines to manage behavioural issues.
The chief medical officer for the commission, Dr Carolyn Hullick, said there was limited evidence they were effective for behavioural issues in people with cognitive disability or impairment. What was known is that they increase the risk of falls, stroke and death, she said.
A new national standard to be released Thursday stresses that those prescribing such drugs must first consider non-medication options.
Hullick said the impetus for the new standard was that both royal commissions into disability and aged care highlighted “there was a fundamental problem with the way we were using medication to restrict people and to control their behaviour, rather than using the medications appropriately for management of symptoms and disease”.
“Whether you’re a child or whether you are a 95-year-old, the principles should be the same,” Hullick said.
Psychotropic medicines include antidepressants, anxiolytic/hypnotics and antipsychotics. There has been a 60% increase in their prescription for all Australians over the past three decades. About a third of people with intellectual disability are prescribed psychotropics and 61% of people given at least one in their first three months in residential aged care.
The new standard emphasises that health professionals must develop individually tailored non-medication interventions and only use psychotropic medicines as a last resort.
In cases where doctors do prescribe them they must ensure there is informed consent, with patients and carers provided comprehensive information about the purpose, benefits and risks.
Prof Eddy Strivens, a geriatrician and clinical director of the Cairns and Hinterland Hospital and Health Service, said the standard would encourage health professionals to find out the reasons behind someone’s behaviour, which is often their way of communicating an unmet need.
