There is hope for dealing with dementia, but we have to do more, and now, says Australia’s foremost expert.
Focusing on post-diagnostic care, research, and interaction between hospitals and aged care will help us take dementia from the darkness to the light, says leading Australian expert, Professor Henry Brodaty AO.
Professor Brodaty told the National Press Club in Canberra on Wednesday that he had retitled his talk to “Dementia – hope beckons” because he wanted to take the audience on “a journey from darkness to light”.
Professor Brodaty co-directs the Centre for Healthy Brain Ageing at UNSW Sydney. Since taking his medical exams in 1972, he’s been a clinician, researcher, policy advisor and former chairman of Alzheimer’s Disease International and a past president of Alzheimer’s Australia (now Dementia Australia).
“We’re all frightened. We’re scared. We make jokes about it,” he said.
He shared one to illustrate the point. A prime minister (he didn’t name names) who visited a nursing home on the campaign trail asked a resident, “Do you know who I am?” She replied, “No, but if you go to the desk, they will tell you.”
But it’s not a joking matter, and there was still plenty of darkness around dementia, he said.
Around 433,300 Australians live with dementia. That’s expected to double by 2058. It’s the leading cause of death for women, the second leading cause of death overall and it’s a major cause of disability and disease.
There are over 140,000 people caring for someone with dementia, over half spend more than 60 hours a week providing care. Indigenous people develop dementia at two to five times the rate of the general population.
Meanwhile, workforce shortages persist. And there is still stigma, in the community, and in the healthcare profession.
Alzheimer’s is the most common cause of dementia, but there are over 100 different causes. Age is a major risk factor, but over 2000 children are affected by dementia. Age is the most common risk factor, but not the only one. Professor Brodaty’s youngest patient was aged 42.
When Professor Brodaty starting practising, one in 12 people were over the age of 65. Now it’s one in six.
In 2024 for the first time there were more over 65s than under 15s, and with ageing comes dementia. Over a third of people aged over 90 have dementia.
People with mild dementia wait two to three years for a diagnosis. And there are wide gaps in post-diagnosis care. About two-thirds of family carers say they feel abandoned, with no management plan, and no idea what to expect.
Where is the light?
That would be in research, which has included major contributions from Australia, such as the discovery of toxic amyloid protein, considered to be at least the partial cause of Alzheimer’s disease.
In May, the TGA approved anti-amyloid drug donanemab (Kisunla, Eli Lilly) – the third in a new generation of drugs targeting amyloid plaques to have been submitted for registration in Australia, but the first to receive approval.
It is expected to cost patients around $40,000 out-of-pocket.
“The argument would be that if it’s delaying progression of dementia at the early stages, then [a PBS listing] may save those monies,” Professor Brodaty said.
“The drug companies – some of them are here today – will be able to argue before the PBAC that these are a breakthrough.
“People were still declining on donanemab, but about 27% or 30% less than the people on placebo.
Future treatments, he said, would likely involve combinations of amyloid-targeting disease modifying drugs and treatments that target the tau protein, which is involved in the development of Alzheimer’s disease.
“It’s not going to be for everybody,” the researcher said.
“It’s going to be for a small number of people … because once people have advanced dementia, it’s not going to help.
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“And if people have vascular risk factors, like they’ve had a history of stroke or anticoagulants or certain genotypes, then they’re at risk of a haemorrhage, so they’re not going to be suitable as well.
“It’s not the answer, it’s part of the answer.”
An important aspect of research was collaboration, said Professor Brodaty.
“It’s happening big time, because now everyone is sharing data. All the funding bodies require us to make our data available to other researchers.”
Professor Brodaty said he would be sharing information at an upcoming conference in Toronto about how to deliver a prevention program virtually online like his centre’s program, called Maintain Your Brain.
“It’s happening a lot in the basic research, in treatment – the drug trial people, of course, they’re multinationals. It’s happening in the care area of research as well.
“And it’s happening in the epidemiological research, which is the one that we’ve been particularly involved in, we have a study now called the [Sydney] Memory and Ageing Study.
“We have about 800 people aged 70-90. We’ve been following up every two years to see what are the risk factors and protective factors, comparing it to a similar study we did starting in 2005 and we want to see in 20 years, has there been a change, a generational change, in risk factors and rates of dementia.
“And the evidence from other countries is that it probably is happening.”
And the light was also to be found with the carers and professionals who were “illuminating the path forward” by establishing self-help groups for people living with dementia and their families, said Professor Brodaty.
“In 1989 we showed that a dementia carers’ training program could improve carers’ psychological health, maintain people at home longer and save thousands of dollars.”
The program was copied around the world. It was shown to save $200 million a year, and in the 2023 federal budget, the government allocated $31 million to roll it out nationally.
“That’s a 15 to one return on investment,” said Professor Brodaty.
We also have better diagnostic tools now, he said. The amyloid PET scan can make a more accurate diagnosis of Alzheimer’s. And there are spinal fluid tests for Lewy Body dementia and Parkinson’s dementia. Blood tests are being developed.
“At our Centre for Healthy Brain Ageing (CHeBA) Professor Sachdev has spearheaded international diagnostic criteria for the diagnosis [of vascular dementia], and these have been accepted for publication in JAMA Neurology just this week,” said Professor Brodaty.
And we know about risk and preventative factors. A population study published in the Lancet in 2023 showed four risk factors which accounted for 45% of the risk.
“We now know that half of the risk of dementia, generally, not just specifically Alzheimer’s, can be accounted for by environmentally modifiable factors, things that we can do something about,” said Professor Brodaty.
We’ve gone from very little awareness and no treatment, to over 8000 researchers, along with clinicians, people with lived dementia and their families and carers attending the Alzheimer’s International Conference in in Toronto, Canada on Saturday.
Importantly, we’ve had a recent paradigm shift to reablement. Like rehabilitation, it means enabling people to live well for many years after diagnosis. This will be the focus of Alzheimer’s Disease International’s annual World Dementia report to be released in September.
“I’m not being Pollyanna about this,” said Professor Brodaty.
“I know in the later years that’s difficult, but for many years, people can live well, maximise their abilities and enjoy their life for longer. There are programs that exist, but they’re sparse and funding is lacking.”
We do fund services, said Professor Brodaty – information, counselling, advocacy, helping with behavioural changes, education of aged care workers, and others, and AIHW-led data collection. We have aged care packages, though 87,000 are still on the waiting list for those.
There are also great advances in drug development, although it is by no means the best and only hope.
Since the first drug for Alzheimer’s, tacrine, in 1986, billions have been poured into drug research and development. By 2000, there were four drugs, but they were “bandaids, not cures”.
And decades later, we now have the first disease modifying treatments in Alzheimer’s – donanemab and lecanemab. The former was approved by the TGA in May this year.
But they’re complex to administer, expensive, and there are side effects, said Professor Brodaty. They only work in early disease, for people with the pathology but not many of the symptoms. Better drugs are in development, he said.
‘We can do more, you bet, and it can save money’
The 2024-2034 National Dementia Action Plan has been released, but there is only $166 million in funding.
“Too little for what Australia needs,” said Professor Brodaty. “We can do more, you bet, and it can save money.”
Dementia navigators are needed to guide patients and families after a diagnosis, like in breast cancer, he suggested.
“They could be nurses or allied health professionals. They would have a caseload of, let’s say, 50. They would be brought into action when a person gets diagnosed, and they’d be available intermittently in times of stress, they wouldn’t need to be there the whole time, and that would continue until the point of admission to a nursing home. This is the model that we put together.
“We proposed that to the NSW government. Anne Cumming, who’s in the audience here, and I put a dementia services plan together to the NSW government, until they lost government. And so it landed on a shelf. We’d had pricing done by PricewaterhouseCoopers and showed that it was cost neutral.”
Professor Brodaty said we need to emulate our success at reducing rates of death from cardiac disease.
“It’s now time for us to look after our brains.
“This year, CHeBA published in Nature Medicine results of the word world’s largest randomised controlled trial, completely delivered online, to improve cognition. It was called Maintain Your Brain, and it was funded by the NHMRC. Over 6000 people aged 55 to 77 participated.
“We’re now applying to get funding to do this nationally. We also did a cost benefit analysis, and we showed that the cost of the program was offset by savings in health costs.
“So, ladies and gentlemen, we have a program that can delay the onset of dementia, possibly by a year or more. It’s cost effective. For every year we can delay the onset, we reduce the numbers of people by 10%.
“Remember, $3.7 billion in direct costs reduction by 10%, $370 million saved. Imagine what the return on investment would be if Australia did this?”
CEO of Dementia Australia Tanya Buchanan, who was at the Press Club address, asked Professor Brodaty what his advice to the 48th Parliament would be.
“I hope they’re listening,” he replied.
“Programs that were just talked about, for post-diagnostic care, are really important, but also helping with research, not just into the cause … and the drugs, but also into how to provide better care more ably.
“This is something we did do before with the dementia collaborative research centres in the past.”
One of the things that was funded in the national plan was interaction between hospitals and residential care, he noted.
“One in four people with dementia will go into hospital in a year. They’re more likely to stay longer, have more complications and have a higher mortality. Getting that right is really important as well.”
