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As dementia edges closer to becoming the leading cause of death for Australians, it is crucial that we adopt a dual approach to focus on the future brain health of the nation as well as providing more targeted, effective support to those impacted by dementia.
Despite the growing number of Australians diagnosed with dementia — there are an estimated 421 000 Australians living with dementia, a figure that is projected to almost double in the next 30 years — this condition is not receiving the recognition it needs.
Dementia is the second leading cause of death in Australia and is expected to soon become the leading cause of death. The 2024 Australian Institute of Health and Welfare Dementia in Australia report highlights that dementia is already the leading cause of death in the ACT, SA and NSW and is the leading cause of death of women, the second leading cause of disease burden overall, and the leading cause of burden for people aged 65 years and over. Rates of dementia among First Nations Australians are estimated to be 3-5 times higher than rates for Australia overall. Despite this enormous impact, there is an evident lack of knowledge surrounding dementia, with surveys in a 2024 Dementia Australia discussion paper finding that one in three people incorrectly believe that dementia is a normal part of ageing – a figure that has increased slightly in the past decade.
Research from the 2024 update of the Lancet Commission on the prevention, treatment and care of dementia reports that almost half of dementia cases worldwide could be prevented or delayed. The Lancet Commission identified that the 14 modifiable risk factors occur across the life course starting in childhood, underscoring the need for a public health approach to dementia prevention activities.
The 14 risk factors are: lower levels of education, high low-density lipoprotein cholesterol, hearing impairment, high blood pressure, smoking, obesity, depression, physical inactivity, diabetes, excessive alcohol consumption, traumatic brain injury, vision loss, air pollution and social isolation.
Although we cannot stop ageing, modify our genetics or family history, research is now clear that a significant number of dementia cases can be prevented or delayed by addressing modifiable risk factors. Addressing these risk factors using a public health approach to brain health that incorporates health equity is crucial to addressing the expected rise in dementia numbers in the future. This approach requires government investment in education campaigns and a commitment to addressing the social and commercial determinants of health.
It is also imperative that in the here and now, we improve outcomes for Australians currently affected by dementia. Dementia Australia’s research report People in the community are the challenge and the solution: Towards a dementia-friendly future highlighted that the profound lack of knowledge in the general community means that people living with dementia are subject to discrimination and stigma and are frequently prevented from living their lives to the fullest.
The role of health care professionals
Health professionals play an essential role in dementia awareness, highlighting modifiable risk factors and if diagnosed, helping people living with dementia to live well for longer. Research from the 2022 Australian Institute of Health and Welfare Dementia in Australia summary report shows that people living with dementia stay in hospital 5 times longer than average hospitalisation lengths and many remain in hospital after their acute health needs have been stabilised. People living with dementia can miss out on health care as a result of their diagnosis and too many are not offered any support at all after a diagnosis.
By assessing physical and cognitive issues, health professionals can provide interventions to support the maintenance of current strengths and capabilities, improve skill acquisition and promote recovery, enablement and rehabilitation.
Appropriate post-diagnostic support and interventions can slow the progression of cognitive and functional decline, improve quality of life and delay or prevent residential aged care admission.
A resource for professionals when treating patients with a dementia diagnosis or general cognition concern is Dementia Australia’s Referrer Kit. The Referrer Kit includes a dementia service guide, The Dementia Guide, information on the BrainTrack app and a GP referral script pad.
It is important for health care professionals to know that Dementia Australia is here to provide trusted information and resources, and importantly to know to refer patients to access pre- and post-diagnostic services and support for people living with dementia.
Planning for the future
Dementia Australia is looking forward to the release of the National Dementia Action Plan, a ten-year plan for government to put people living with dementia, their families and carers at the centre of all action on dementia and to move dementia care forward in Australia.
On a practical level, it means there will be greater focus on the impacts of dementia, availability of current services and improving the experience of diagnosis, support and care for people living with dementia and their families and carers in the future.
Dementia Australia will continue to work with the sector to ensure that we have the right systems in place for all impacted Australians to be able to access appropriate services and more treatments as they become available.
For support and information, please contact the 24/7 National Dementia Helpline on 1800 100 500 or visit dementia.org.au.
Professor Tanya Buchanan is the CEO of Dementia Australia. Professor Buchanan is also an Honorary Professor of Practice at the School of Health and Society (Public Health) at the University of Wollongong.
Catherine McCarthy is a media and communications professional working at Dementia Australia, with previous experience in education.
Some suggestions on topics to be covered with the patients and their family/carers after someone is diagnosed with dementia in Australia can be found in our paper here:
https://doi.org/10.1111/ajag.13291
Given that the dementias are the second most common cause of death, it seems inappropriate that dementia is not recognised as a terminal disease – albeit with a long period from diagnosis to death for most forms of dementia.
As a corollary, sufferers from dementia, unlike those suffering from other terminal illnesses, are not permitted to make a forward arrangement for voluntary assisted dying once their illness reaches a certain point. For the sake of argument, that could be when the dementia reaches the advanced stage.