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It's a human success story - the fact that we are living longer than ever before.
"In some way you know it's a positive thing that we've done a pretty good job really at helping heart disease, curing cancer or at least having early detection. And so it is a consequence of living a lot longer and Australia is I think the second or third longest living country on earth so well in a lot of ways"
Professor Tracy Comans there - she's a Professorial Research Fellow at the University of Queensland.
The Australian Institute of Health and Welfare recently named dementia as the leading cause of death in Australia for women and the second-biggest killer of men after heart disease.
One in 10 Australians died from a form of the disease in 2023, the most common of which are Alzheimer's disease, vascular dementia, frontotemporal dementia and Lewy body dementia.
Dr Comans is also one of the authors of guidelines created for improving the lives of people with dementia in and out of aged care.
One area identified is that people living with dementia often receive inadequate pain management because they cannot accurately verbalise or localise the pain they are experiencing.
Professor Comans says there is a lack of data relating to four key measurements for the care of people experiencing dementia, including pain management, dignity, hygiene and meaningful activities.
"So this is really about how we should measure outcomes of care for people living with dementia. So what we set out to do in this project was look at all the different domains that are possible and we engaged very closely with stakeholders. So with people experiencing dementia and their carers and industry partners from the very beginning of this project. And really co-designed that process to look at what was important to them. So these were the outcomes that we found that we could actually measure straight away so that's our recommendation, that these things are the things that we should be be looking at measuring because these are key outcomes to important to people with dementia."
The guidelines have been developed in collaboration with other universities, aged care providers, carers and people with dementia to assist in policy development and for aged care providers to review current practices.
With an ageing population, more than one million Australians are predicted to be living with dementia by 2065.
A lack of staffing in aged care homes and the community is a major issue now, and will continue to be so in the future.
"Yeah it's it's been a key problem for a long time and we know that in the care economy workers have been underpaid for a long time and obviously the change in working conditions has been highly welcomed. I think it's going to take some time for that to flow through and for us to see the impact on retention because some of those pay rises are quite recent."
People experiencing dementia often suffer from a lack of continuity of care due to high staff turnover and a lack of dementia specific training in the aged care sector.
Prof Comans says while pay rates have improved for care staff, it's likely to be a while before this translates to better trained staff and care on the ground.
While dementia is a leading cause of death it's not a natural consequence of ageing.
Genetics and lifestyle also play a role and it's a tricky disease to diagnose especially early on.
Dr Janet Van Eersel is a Senior Research Fellow at Macquarie Medical School Dementia Research Centre.
"So by the time you show symptoms, you've already lost a lot of the cells in your brain. Really important brain cells. So by the time you show symptoms you're already at a critical stage. It is very hard to treat that. So hopefully with better imaging and now with the arrival of some new blood tests hopefully we will be able to diagnose people at risk a lot earlier. Instead of trying to treat people when they're 60 or 70 potentially treating them when there maybe 40 or 50 when it's already showing maybe in their blood that certain levels of certain risk factors are going up. I think that will go a long way as well. Treating earlier will always be better than trying to fix something that's already happened"
Various studies suggest that lifestyle changes such exercise, diet and social interaction may help slow or prevent the symptoms of dementia.
The Lancet Journal in 2024 identified 14 modifiable risk factors, including traumatic brain injury, depression, obesity, lack of exercise, too much alcohol, hearing loss and social isolation among others that could reduce rates by up to a third.
Dr Janet Van Eersel says there have also been developments in diagnostic blood tests with some having been approved recently by the FDA in the United States.
"But I guess we're still trying to understand how useful they are. So they are regularly used in clinical trials where we can't put or don't want to put everyone through an imager every time. And this is something that we can do with patients you know from much much earlier on when has something like my cognitive impairment you could start already measuring their baseline levels that is how they progressively increase. But this is something it's very, very new so just in the last year or two so it certainly something that we have to wait and see how we go and where this leads us."
The Federation of Ethnic Communities Council of Australia or FECCA says one in three Australians over the age of 65 is from a multicultural background.
The UNSW Centre for Population Ageing Research reported that those who speak languages other than English at home or who have poor English proficiency are at a higher risk of dementia in old age.
FECCA would like to see more inclusive aged care plans that better reflect the cultural, spiritual and dietary needs of this group.
In a statement to SBS a spokesperson for FECCA said:
"Language barriers can lead to misdiagnosis or delays, especially if interpreters aren’t used. Stigma is another big issue. In some cultures, dementia is seen as shameful or even a mental illness, which can stop families from seeking help. Many people also struggle to navigate a complex health and aged care system without culturally tailored information. And as dementia progresses, people often lose second languages and revert to their first language, which can make mainstream care settings isolating. These challenges can lead to late diagnosis, higher stress for carers, poorer outcomes unless services actively address cultural and linguistic needs, all of which could mean greater cost to the older person and the healthcare system."
Listeners seeking support can contact the free and confidential National Dementia Helpline on 1800 100 500.
