“I used to be a thinking person who had feelings. Now I am a feeling person who has thoughts.”
Theresa Flavin is in her mid-50s. She is an attractive, forthright woman, with long grey hair. Ten years ago, in her mid-40s, she was diagnosed with early-onset dementia. It was a devastating blow at such an early age, but Flavin has not been daunted. Over the past decade she has become an outspoken activist for people who share her condition. Her learning curve has been steep.
“I came out of the finance sector,” she tells me, “and I have been staggered by the difference between that and the world of social services and advocacy. There are no frameworks, no structure. It’s the most slapdash sector in Australia.”
Flavin leans forward to further emphasise her point: “There are no solutions, no insight. It’s all about sucking the feeling out of an audience. I am a practical person. I want outcomes.”
She is talking about the right to safety, respect and autonomy for people with dementia, but she is also talking about why so many older Australians dread entering residential aged care.
She is not alone. John Quinn, who also has early-onset dementia, is another outspoken advocate for fellow sufferers. “There is a mindset,” he says, “that when someone gets diagnosed with dementia, they are no longer the same person. They get dehumanised, seen as lesser, so they can be treated worse.”
Like Flavin, he is concerned about the horrifying rate of sexual assault in residential aged care. According to recent data, 44 assaults are recorded each week in Australia. Quinn also worries about his future – the if and when he will be sick enough to be institutionalised. Flavin fears being assaulted. Quinn fears losing control of his own sexual impulses. As a man who has always behaved respectfully towards women, the idea horrifies him. He wants there to be enough staff available to stop him should he ever behave in this way.
Quinn’s wife, Glenys Petrie, shares his fear but wants him to be stopped appropriately, with care and concern, not blame and punishment. She worries that she might not even be informed if such behaviour occurs. “I would be very sad and offended if I was not told about the situation. I would know how to communicate with him about what happened and why it’s not appropriate. I know him best.”
Petrie feels strongly that the more cared-for residents feel, the more likely they are to behave well. If they feel anxious and afraid, if their concerns are ignored or dismissed, she believes, the opposite occurs. “Isolation and misery often manifest as becoming the worst person you can be.”
Jo, a nurse working in aged care in Victoria, agrees that a lack of properly trained and resourced staff makes isolation more likely for people in care. “Our ratio in high care in Victorian state care is 1:7. It’s exhausting. Breaks my heart. Not enough time to just sit and hold someone’s hand or just talk. We do the tasks, and we talk a lot with them while we’re there, but then… on to the next one.”
Everything got worse with Covid-19, Jo says. “Less activities, no outings, no volunteers visiting.” This created the very isolation and misery Petrie and Quinn fear will increase the vulnerability of dementia.
Catherine Barrett, director of Celebrate Ageing, is angry at how often the trauma of being sexually assaulted when you have dementia is minimised. Patients are disbelieved or even turned into a joke. “We react with cognitive dissonance when accusations are made. We push it away and tell ourselves it didn’t happen.”
Barrett believes the shocking rate of 44 assaults a week is still below what is really happening. An investigation by KPMG in 2021 backs her up. It found 58 per cent of staff in aged care don’t believe sexual assault has a negative effect on older people. Barrett says there is a common reaction she receives after speaking about this issue in public forums. “You are approached by ashen-faced people saying, ‘Mum told us something like that happened to her. We thought it was her dementia. She died and we never dealt with it.’ ”
Yumi Lee, chief executive of the Older Women’s Network NSW, gives a sobering statistic. “Fifty per cent of women who have been assaulted in residential aged care die within a year.” Lee is angry as she talks. “This issue is mainly about women and dementia. Women are so vulnerable to this from birth until death.”
Lee’s network ran a survey asking members what they wanted in aged care. A significant number said they wanted women-only facilities. Flavin wants an advance life directive. “Advance care directives are bullshit,” she says. “It’s not about care, it’s just about death. An advance life directive is where a person could say, ‘I don’t want to have sex with anyone when I can no longer consent, and that includes my husband.’ ”
It’s not only fellow residents who pose a threat. Shelley, a hospitality worker in residential aged care, who asks not to use her real name, tells me that she and other non-medical staff often develop confidential relationships with residents. Shelley recounts a story of a woman with low capacity who said an agency nurse had “laid on top of her”. The incident was relayed to a nurse who told the family and then the police. For a while, no male staff were allowed to interact with the resident, including kitchen staff.
Shelley reminds me of a case in Tasmania where an aged-care worker was charged with taking photos of dementia patients in various stages of undress. He received 100 days of community service and said “it was a stupid, laugh-out-loud joke”.
Flavin points to the complexities of the issue. “Someone has the right to be sexual, but they also have the responsibility to make sure there is consent,” she says. “If you can’t take the responsibility then you shouldn’t have the right.”
Many solutions are being offered. Everyone I spoke to felt that better staff-to-resident ratios were the most effective way to help residents feel safe and protect them from assault or from behaving inappropriately themselves. Staff training is also recommended. The Older Persons Advocacy Network, through its #ReadyToListen project, has developed resources to help aged-care staff deal with accusations properly. They include a decision tool about when police should be called.
But, as Jo says, “The work we do is considered the lowest. We do everything others can’t or won’t do. It’s physically and emotionally exhausting and we are often slapped, hit, bitten, sworn at and excreted on. Our skills are broad. They call them ‘soft’. We have to de-escalate situations and are endlessly patient. As a result, we struggle to attract people to the industry. It’s not glamorous and nor are there any performance benefits.”
Dementia is already the leading cause of death for women in Australia. In 2022, almost 500,000 people are suffering with the disease. By 2058 this could grow to more than a million. Perhaps we need to stop considering the work of aged-care staff as “the lowest”. The older person’s life you improve will one day be your own.
This article was first published in the print edition of The Saturday Paper on July 2, 2022 as "Fighting back".
For almost a decade, The Saturday Paper has published Australia’s leading writers and thinkers. We have pursued stories that are ignored elsewhere, covering them with sensitivity and depth. We have done this on refugee policy, on government integrity, on robo-debt, on aged care, on climate change, on the pandemic.
All our journalism is fiercely independent. It relies on the support of readers. By subscribing to The Saturday Paper, you are ensuring that we can continue to produce essential, issue-defining coverage, to dig out stories that take time, to doggedly hold to account politicians and the political class.
There are very few titles that have the freedom and the space to produce journalism like this. In a country with a concentration of media ownership unlike anything else in the world, it is vitally important. Your subscription helps make it possible.
Select your digital subscription