The Royal Commission into Aged Care Quality and Safety has delivered a damning interim report, describing a “cruel and harmful” system that, among other abuses, routinely sedates residents with powerful antipsychotics just to stop them wandering or being agitated.
These early findings prompted a key question during a panel discussion at the recent Wicking Trust Symposium with HammondCare dementia experts Associate Professor Stephen Macfarlane and Dr Meredith Gresham, who both gave evidence as expert witnesses for the Royal Commission.
The discussion was moderated by Conjoint Associate Professor Colm Cunningham, a member of the Wicking Strategic Review Panel and Director of the Dementia Centre at HammondCare.
“What would be the features of a residential aged care sector that would reduce or eliminate this use of ‘chemical restraint’ for people with dementia and create good experiences of ageing well?” asked one of those attending, inviting Professor Macfarlane and Dr Gresham to “re-imagine” aged care.
Their visions were broad. Fully trained staff who don’t necessarily find geriatric care “sexy” but value it as a core business. Family style care with consistent carers who are alert to “small changes that matter”. Flexible respite care that suits those needing respite not those providing it. A shift in design from “multistorey dog boxes” to community hubs that share space with kindergartens.
Chair of the Royal Australian and New Zealand College of Psychiatry’s (RANZCP) Faculty of Psychiatry of Old Age and Head of Clinical Services at The Dementia Centre, Professor Macfarlane has already attracted pushback from some GPs for the stand he has taken against ‘chemical restraint’, accused in a fiery debate in a medical magazine of living in “cloud cuckoo land”.
But the Royal Commission has backed his concerns, citing research involving 150 residential aged care facilities which found that 61 per cent of residents were regularly taking psychotropic agents when the Aged Care Clinical Advisory Panel estimates such medications are only clearly justified in about 10 per cent of those cases.
Professor Macfarlane is hopeful the Royal Commission process will produce real change but like most others in the sector he is mindful that many other similar investigations – “20 separate inquiries since 2010” – only won “vague and noncommittal” responses from governments.
What’s most needed, he said, is better training for all staff, something he says the government can require of training organisations and colleges with “the stroke of a pen and at no cost to itself”. He believes this would have a ripple effect across care and, ultimately, on a society that doesn’t now value care for older people, or older people themselves.
Included in the better training would be personal care workers who currently can qualify to work in aged care through a 6-8 week online course “without doing a single compulsory unit on dementia”, despite 50-70 per cent of residents having dementia.
But he says improved training is equally critical for medical staff, who often don’t see nursing home care as either personally or financially rewarding, and he is unconvinced by arguments that a better ratio of nurses and/or doctors to patients is key. There is, he says, only one place where dementia behaviours are managed worse than in aged care and that’s in acute hospitals, “which are full of doctors and nurses”.
“When I see medical students in their fourth year who get a week to learn about everything about aged psychiatry, and it’s the first time they’ve has a lecture about dementia, is it any wonder we’re doing badly?” he asked, adding that dementia should be “core business” for all clinicians apart from paediatricians, obstetricians and pathologists.
Professor Macfarlane highlighted the inappropriate use of psychotropics in response to the presence of symptoms such as agitation. In a telling analogy, he observed he could make everyone in the room at the symposium agitated by turning the heat up or down enough, “but does that mean you should take antipsychotic medication to address it? Clearly, not. We need to look at what is making people agitated, and address the cause.”
But he says aged care fails too often to understand symptoms as a signal that “something is wrong in the environment” – whether that’s lack of empathic or culturally appropriate care, lack of specialist attention, pain, or the physical environment of aged care, including noise, isolation from loved ones, and poor design, all of which impact on behaviours.
Design and structure in aged care are also big concerns for Dr Gresham, who is now coordinating an international study on improving dementia diagnosis and post diagnostic support at the University of NSW and consulting to HammondCare after many years as its Head of Design and Research.
She pointed to the popularity and success of ABC TV’s documentary series Old People's Home For 4 Year Olds as yet another example of intergenerational living that was a “roaring success” but not taken up widely.
“Why aren’t we having community hubs with kindergartens and aged care facilities, why not aged care facilities that have social clubs for day activities, and night centres for people (to support) the exhausted elderly carer who would cope well during the day if they got a good night’s sleep?” she asked.
Improving supports for carers was the focus of Dr Gresham’s presentation to the Royal Commission, particularly around respite care – “the most asked for service but also one of the most underutilised services”.
The whole concept of respite seems like a “no-brainer”, she said: “you’re caring for me, pop me into respite and you can have a break” but she said most carers are reluctant to take it up, wanting either to store up respite “for when things get really bad” or feeling they don’t deserve it and it should “go to someone who really needs it”.
But it also fails because it’s often offered in a way that suits providers rather than the person with dementia or the carer, such as in two week chunks. This might be better for a provider “to manage the books” but it can be terrifying for the person with dementia, and thus again shift the burden back to the carer.
“My own mother-in-law was getting calls at 3am, to ‘settle your husband down’ – that’s not respite,” she said.
What’s frustrating in the policy and research space, she said, is there is “massive” evidence of programs and interventions to support carers that will delay entry to aged care for all sorts of people, but they are not taken up and run nationally.
Looking around, she said those examples were to be found in the room at the symposium, acknowledging that South Australian aged care provider, Helping Hand, offered innovative cottage respite models where people with dementia and their carers could come in together.
Dr Gresham led work on the HammondCare Going to Stay at Home program, which combined caregiver training with a residential respite stay.
It had been found to cost about $3,700 per couple, which may seem a lot upfront, she said, but this outlay was demonstrated by financial modelling at Flinders University to be recouped by the health and aged care systems within five months.
“We’re fixed in a respite model of pushing people apart, and policy that supports that:… (we have to) start thinking about carers and the person they are caring for as a unit.”
Philanthropy has the ability to make real and measurable differences to causes and people. A collective effort can make real and lasting impact.
A stunning example of this is demonstrated through the legacy of John and Janet Wicking. After a vibrant lifetime of partnership and generosity, they left behind the J.O. & J.R. Wicking Trust. It was established in 2002 and is now one of Australia’s most significant charitable trusts distributing around $4 million annually. Through its major grants program the Trust aims to achieve systemic change in the areas of ageing and Alzheimer's disease, and also enjoys well-established partnerships with Vision Australia and the O'Brien Foundation (formerly the Microsurgery Foundation).
The Wicking Symposium is a part of the Trust’s contribution to actively supporting the collaborative search for answers to the issues and challenges facing ageing Australians and those with Alzheimer’s disease to age well and die well. The Wicking Trust’s approach to achieving this change has evolved over time and continues to evolve.
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Image from left: Conjoint Associate Professor Colm Cunningham, Dr Meredith Gresham and Associate Professor Stephen Macfarlane.