‘Change is in the air: Brave New World’ was the theme of this year’s International Dementia Conference, held on September 8 and 9 at the Hilton, Sydney.
Mike Baird, HammondCare CEO, said that it’s time chart a new path forward, experimenting with new models of care that ensure the horrors uncovered by the Royal Commission into Aged Care Quality and Safety, are never repeated.
“Somewhere as a nation, we lost our care and love for our elderly…but that is coming back,” he said.
“I think at the end of these two days, we can make a difference.
“I hope everyone goes away a bit inspired, to feel challenged, brave, but also ambitious.”
The conference, with speakers comprising a diverse range of stakeholders, including academics and health care workers; aged care providers; persons living with dementia and their families; emphasised the need to value, equally, the perspectives of all persons associated with the dementia journey.
Anika Wells, minister for aged care, addressed the conference on Day 2, announcing that the federal health and aged care department is currently negotiating a new, 10-year dementia action plan to apply across the federal and state governments.
“In 2023, this government will continue investing in specific dementia programs to improve the quality of life for people living with dementia from diagnosis through to residential aged care,” she said.
Anne Ruston, shadow minister for health and aged care, also addressed the conference, saying she thinks governments should be open to experimenting with new, de-institutionalised models of dementia care.
“I think a shift in the way we look at things could have real societal benefits,” she said.
A clinical paradigm shift
During the first block of presentations, the very nature of Alzheimer’s disease was reframed by Professor Craig Ritchie, professor of psychiatry and ageing at the University of Edinburgh.
Providing a run through of his career’s research spanning 25 years, Ritchie revealed that targeting the symptoms of dementia once they manifest in older age is too little, too late.
“Alzheimer’s disease begins in mid-life: that’s the paradigm shift,” Ritchie said.
If we could identify the risk factors earlier in life, perhaps in childhood, Ritchie said he has hope that the disease could be one day curable.
Providing early interventions is a challenge, however, due to the reactive nature of current medical systems.
“We don’t provide health care, we provide illness care,” Ritchie said.
“So to improve health we have to think about that, not illness.”
Whilst there are a number of preventative health campaigns around the globe focusing on staying fit and health for purpose of preventing heart disease, cancers and the like, Ritchie said that this advice doesn’t perfectly translate to the prevention of neurodegeneration.
“Sleep, air pollution, stress and social isolation are unique factors associated with dementia,” Ritchie said.
“These factors accumulate in those who are in lower socioeconomic circumstances.”
Scotland is leading the way on this front, having established a number of brain health initiatives for Scotland residents of all ages.
Brain Health Scotland provides education campaigns for children and adults, the ability for consumers to do an online brain-age check, and the Scottish Government has funded 31 community education and support centres across the country.
“We really have got great government support… that is what gives me a sense of optimism,” he said.
Associate Professor Steve Macfarlane, head of clinical Services at HammondCare’s The Dementia Centre, offered another challenge to the medical community’s assumptions about best practice dementia care.
Firstly, he critiqued the term ‘Behavioural and Psychological Symptoms of Dementia’ (BPSD).
“I don’t agree with it, I would prefer a more nuanced term,” Macfarlane said.
“We all have behaviours, but when you label something a behavioural symptom, it marks it out as something to be treated, often by doctors and often inappropriately with an antipsychotic medication.”
MacFarlane added that there needs to be a greater shift towards non-pharmacological approaches to dementia.
‘All [doctors] know what to do when faced with a problem is prescribe, because that’s all they’ve been taught,” Macfarlane said.
Describing his experience treating older patients with dementia with antipsychotics as ‘bleak’, Macfarlane was astonished to observe the difference when observing the power of individualised, non-pharmacological approaches in 2014.
“The results were remarkable, and so I resigned from my hospital job and became a convert of sorts to non-pharmacological treatments of dementia.”
Cultural sensitivity key to improving First Nations elders’ health outcomes
Nova Peris OAM OLY, the first Indigenous Australian to win Olympic gold, spoke about the unique experience of First Nations’ elders experiencing dementia.
According to the Australian Institute of Health and Welfare (AIHW) dementia prevalence rates in First Nations peoples are about three to five times higher than that of the general Australian population.
However, as Peris pointed out, it is not generally discussed in Indigenous communities, and not well supported by Australia’s current aged care system.
“Dementia is not in our language… dementia is a word that no one wants to touch, for our Aboriginal mob, they are getting old, there’s that expectation… [it’s only spoken about] when it’s dangerous.
“I refer to my uncle… he was a very smart cookie… he now lives by himself, his daughter moved out a couple of years ago because it became too much for her.”
Peris said that she hoped the industry reforms by listening empathetically to the needs of First Nations Australians and developing systems of person-centred care that are culturally sensitive.
“Don’t try to reinvent the wheel; look at all the work that has been done in communities… and have empathy front and centre,” she said.
“Understanding the context of that person is paramount because you want that person to be able to drift off into our dreamtime, to be happy.”
Emotional toll on carers explored
Tully Smyth, a former Big Brother contestant and online influencer, shared her journey caring for and losing her mother, who lived with Younger Onset Alzheimer’s Disease.
Smyth’s mother was diagnosed when she was just 51, and over the next 16 years, the reality star assisted her father Phil in caring for her.
“She ended up being with us for 23 years [post-diagnosis], but she was non-verbal by the time I was 18.”
“Mum was a powerhouse… she was such a hard worker, she was stylish, she was beautiful… [then suddenly] Dad almost became a father of four, because as the disease progresses, there is that regression.”
Symth experienced a mixture of pain and guilt, trying to live a life the same as her peers during her teenage years, then into her 20s.
However, she advised fellow carers to continue to live full lives, as best as they can.
”l’d have wanted me to see all the things she’d seen in this life.”
Smyth added that it is OK for carer’s grieving process to be non-linear.
“I’d been grieving for over 20 years, I lost her by the time I was 17 years old.
“So you feel relief [when the person with dementia passes away]… then you feel guilty for that.”
The role of technological in the new world of care
Bobby Redman, who was diagnosed with FTD in 2014, says that technology has played a vital role in keeping her living at home, independently.
A psychologist and active advocate, Redman was horrified when an aged care assessor suggested she enter a residential care facility.
“As a psychologist I know that changes in patterns of behaviour are important, it signalled to me that things were going pear-shaped,” she said.
“I’m fine when I’m in the community, because there are a lot of social prompts,
“It’s now my voice telling, which is really good for me… I am my own carer, supported by technology.”
“It honestly keeps me alive; it keeps me going.”
Food as foundational medicine
Maggie Beer AO, celebrity cook and aged care nutrition advocate, emphasised the need to, in her own words, ‘raise the bar’ of food quality in aged care facilities.
“If you have good ingredients and the skills of a good chef, they can really make a difference in the lives of people in aged care,” Beer said.
“It’s our responsibility to do better, and it’s within our grasp.”
Key advice from Beer included widespread education campaigns for aged care chefs, the increase of fresh cooked smells to stimulate appetite and enjoyment, and advancement of technology and systems to reduce the use of frozen foods.
“The nirvana is when things are cooked fresh,” she said.