With dementia taking over as the biggest health issue for Australians aged 65 and over, it has given urgency to new research efforts underway in WA to stem the tide.
By Cathy O’Leary
Ask most people what they think are the two biggest causes of death among Australians and chances are their answer will be heart disease and cancer.
While one of those is correct – coronary heart disease claims the most lives of any condition – the second cause is a less visible and often down-played contributor.
Not only is dementia the second-leading cause of mortality among Australians – and the leading cause of death in women – it is also the top cause of disease burden among those aged 65 and over.
The increasing level of burden is largely due to the ageing population but also because the burden from other major causes such as heart disease has fallen.
The sobering statistics are part of a recent update to the Australian Institute of Health and Welfare’s compendium report Dementia in Australia, which shows that dementia was responsible for almost 230,000 years of healthy life lost among people aged 65 and over in 2022, a 62% increase since 2011.
In 2022, 401,300 Australians were estimated to be living with dementia – a 4% increase from the previous year. And without a medical breakthrough, the numbers are expected to more than double to 849,300 by 2058.
Getting in early
Dementia experts are warning that the accelerating numbers have big implications for GPs, current and future, because they are often the first point of contact for people with dementia and their families.
As such, they play a key role in the identification, assessment, provision of information, referral and ongoing management of dementia.
While early detection is considered crucial, often the disease develops slowly, with very subtle early signs. Challenges in detecting the transition between normal ageing and dementia onset, and the lack of a definitive diagnostic tool, can delay diagnosis.
Dementia’s link with ageing is complex too, because it perpetuates the belief that its onset is as inevitable as wrinkles as people get older.
It is that mythology around dementia – held not just by the broader community but also by some health professionals – that is part of the challenge facing Professor Blossom Stephan as she heads new research efforts in Perth.
Previously based at UK’s University of Nottingham where she was Professor of Neuroepidemiology and Global Ageing, the Sydney-born academic recently became the inaugural Chair of Dementia at Curtin University – a position jointly created with Dementia Australia.
Professor Stephan told Medical Forum that the new role would help to drive an ambitious research program in the prevention, detection and care of dementia – and she was excited to be based in Perth.
“The idea is to have a new centre for dementia excellence at Curtin that has both a national and international focus, and covers the whole course of dementia, from early diagnosis through to the care pathway, and how we plan for the individual and the carer’s journey, and improve that, all the way to end of life care,” she said.
“In terms of where I come in uniquely, I’m interested in risk factors for dementia, and how we identify those individuals at highest risk so we can mitigate that risk earlier in life.
Prevention
“We know that without a cure, prevention is going to be our best public health strategy, especially when you look at the Lancet Commission that came out in 2020 that said 40% of dementia cases are preventable.
“So, when you think of 40% of over 50 million cases, that’s a huge number that may be preventable.”
Professor Stephan said some simple strategies such as increasing education and awareness, improving health and lifestyle, and reducing hearing loss could be readily implemented.
And while a cure might be the holy grail, prevention was the next best option, given the forecasted numbers.
Trial hope
“We’re seeing exciting results from clinical trials around being able to hold progression of the disease, so while we’re not seeing a cure, we’re hoping that within a decade there will be one,” she said.
“But in the meantime, prevention is so important, even if it’s to stop people progressing to advance disease stages where we know it’s very costly and has a greater impact on family carers.
“Hopefully, we can mitigate crisis situations and people progressing into care homes, and instead being able to live independently longer and at home longer, so there are a huge number of benefits that come with disease-modifying drugs.”
She concedes that a major challenge is the stubbornly persistent myth that dementia goes hand-in-hand with ageing.
“When people think about dementia, many think it’s just a disease of ageing. While it most certainly is – in that ageing is the highest risk factor – not everyone will develop the disease,” she said. “And that’s where it comes back to the fact that we need a lot more education about the risk factors, and how people can mitigate them at a personal level.”
She said dementia had to be taken out of “such a negative perspective” and the stigma needed to be removed. There was a lot of bad publicity around it, and there were also different cultural perspectives around ageing and mental health.
“What we need to remember is that people can live to advanced old age free of dementia. In fact, that should be considered the norm – that their brain will age normally,” she said.
“We see different cognitive domains or types of cognitive processes across the life course. So, we see vocabulary and general knowledge increase and, as you would expect, as you get older and things slow down, the speed of information processing or executive function decreases.
“So, depending on the domain you’re testing at a given age, you might see differences in performance compared to an earlier or later age. We’re really looking at dementia from a life-course perspective.
“We know there’s a genetic contribution in dementia, but it’s important to give people, even those with a family history of dementia, the optimism that there are health and lifestyle risk factors that they can use to potentially moderate their overall risk, particularly if they can do it earlier rather than later in life.”
Professor Stephan said ongoing gaps in knowledge were highlighted in the results of a survey by Alzheimer’s Disease International which asked people the question ‘is dementia preventable?’. A substantial number of respondents said it wasn’t, despite simple health and lifestyle measures being known to make a real difference.
GPs sentinels
She said the role of GPs in dementia diagnosis and treatment remained integral.
“GPs are the first port of call for the patient, and we need to make sure they have appropriate education in terms of what dementia is, and how to diagnose it, and what the best referral pathways are,” she said.
“Depending on the patient’s symptoms, the GP needs to decide if they need a full work-up, or does it look like it’s a secondary complaint that can followed up in six or 12 months.”
Dementia Australia CEO Maree McCabe said Professor Stephan’s appointment as the inaugural Chair of Dementia presented big opportunities to improve care in dementia, which she described as the chronic disease of the 21st century.
“The creation of a Chair of Dementia presents an extraordinary opportunity – for dementia research, and for education and support for people living with dementia, their families and carers,” she said.
“We are extremely excited by the leadership and opportunities Professor Stephan brings to this role. Where similar positions have been created for other health conditions, we have seen positive advancements – and we are confident the same will occur for dementia.
Consumer input
“The insights of those living with dementia and the 1.5 million Australians involved in their care is critical to enabling and delivering better research, education and support.”
Ms McCabe said a key role of the university position was to elevate the voice of the consumer in dementia research, and ensure programs and services took into account their experiences and needs.
It was important to make people more aware that while there was nothing definitive they could to prevent dementia, there were many things that could reduce their risk.
“These include looking after your brain health, body health and heart health and it’s never too early or too late to start,” she said.
“While we cannot change getting older, genetics or family history, scientific research suggests that changing certain health and lifestyle habits may make a big difference to reducing or delaying the risk of developing dementia.”
Ms McCabe said dementia had many “touchpoints” across the healthcare system, so it was important the different parts of the system communicated with each other.
Ideally an integrated health-care system should offer more consistent experience of diagnosis, as well as access to support services across the trajectory of the disease to maintain the dignity and autonomy of the person impacted, as well as their families and carers.
And access to palliative care services to meet the needs of people with dementia also needed to be planned ahead of time.
Professor Bronwyn Myers, director of Curtin University’s enAble Institute – a research collaborative focused on helping people living with physical and mental health needs or facing the challenges of ageing – said the creation of the new position would promote a dedicated focus on dementia and research.
“Improving how we diagnose, treat and care for those living with dementia is critical to helping Australians age well,” she said.
Professor Stephan agreed that integration of care was important to ensure there was continuous care for a person, rather than receiving ad hoc, fragmented care.
“When you speak to consumer groups, they often say people go from one service to another and have to retell their story over and over again,” she said.
“Standardised education for carers is really important too, and then you can individualise it along the way. You want systems in place so that individuals are diagnosed early enough – and GPs feel competent to do that, and they’re supported to do that, with clear referral paths, so they’re working within a holistic, multidisciplinary model.”
Planning ahead
The RACGP encourages doctors to help patients with dementia understand their condition and plan for the future, including choices they might need to make about their medical care.
GPs often had a long-term relationship with their patients, especially those with serious chronic disease and life-limiting illness such as Alzheimer’s disease and other forms of dementia.
The RACGP recommends that advance care planning be incorporated into routine general practice, to plan future medical treatment for a time when patients might not be competent to make, or communicate, decisions for themselves.
Dementia Training Australia also offers resources for GPs to help in recognising, diagnosing and managing dementia, at www.dta.com.au/general-practitioners
For general information and support, the National Dementia Helpline operates the hotline 1800 100 500 around the clock.
ED: Dementia Australia’s largest fundraising event – Memory Walk and Jog – will be held in Perth on Sunday June 11 at Victoria Gardens, East Perth. It hopes to raise $1.7 million across 20 events in Australia. For details go to www.memorywalk.com.au.