‘Act now’: Dementia is the biggest Aussie killer no one can afford to ignore
One condition is claiming more Australian lives than any other, and experts say we urgently need to “act now” and change our approach to it.
Nell Hawe knew when she started forgetting what she was teaching and where she was driving that she was in trouble.
She’d built a career teaching people about dementia and noticed the signs in herself. But no one would listen.
Ms Hawe was just 48 and doctor after doctor put it down to stress or other factors.
“For four years I fought for a diagnosis of dementia. Four years,” the Port Macquarie resident on the NSW Mid North Coast told news.com.au.
“They kept telling me I was stressed, I’m this, I’m that,” Ms Hawe said.
“I actually saw a doctor who I had previously seen four years before and she said to me “oh my God, I saw you four years ago with the same issues. We’re doing something about this.”
At 52 Ms Hawe was diagnosed with young onset dementia.
She is one of 433,000 Australians currently living with dementia – an umbrella term for a host of conditions that affect the cognitive function of the brain. These include Alzheimer’s disease, vascular dementia, younger onset dementia, lewy body dementia, frontotemporal dementia (FTD), and chronic traumatic encephalopathy (CTE), among others.
And in the coming years, a tsunami of new cases is ahead. Latest figures released by the Australian Institute of Health and Welfare (AIHW) on Friday reveal dementia is now the leading cause of death for Australians, and estimates more than one million Aussies will be living with the condition by 2065.
Almost 1000 Australian children are also living with one of the more than 100 forms of childhood dementia.
Today, news.com.au and The Australian launch Think Again – a national dementia campaign aimed at changing the narrative the condition only affects the elderly and is an inevitable part of ageing.
Leading dementia experts including Scientia Professor Matthew Kiernan from Neuroscience Research Australia (NeuRA), neurologist Associate Professor Rowena Mobbs, Scientia Professor Henry Brodaty from the Centre for Healthy Brain Ageing (CHeBA), and Professor Tanya Buchanan from Dementia Australia have joined forces calling for brain health to be at the forefront of people’s minds – and for a more co-ordinated care approach when a person is given a dementia diagnosis.
The campaign, which is also supported by the Australian Medical Association’s President Dr Danielle McMullen and the Royal Australian College of General Practitioners (RACGP) President Dr Michael Wright, encourages Australians to:
* Book in with your GP to talk about brain health;
* Complete the CogDrisk test;
* Download Dementia Australia’s BrainTrack app;
* Call on federal government to fund services and support systems such as dementia care navigators and a childhood dementia National Centre of Excellence
Rather than be angry at the doctors who dismissed her initial concerns, Ms Hawe said more needs to be done to ensure people and GPs are more informed about dementia.
“They need dementia training,” the now 57-year-old said. “It’s plain and simple”.
Latest AIHW figures show dementia cost the federal government $3.7 billion in expenditure, but the truer cost to the economy is believed to be about $18 billion – made up of medical cost, as well as the value of lost productivity from a person with dementia or their carer.
It is estimated 1.7m Australians care for someone with dementia.
“We need to talk about it, understand it and embrace the strategies we now know can slow, reduce the severity or even prevent many cases,” NeuRA CEO Prof Kiernan said.
Story no Australian can afford to ignore
14 ways to fend off Australia’s biggest killer
Professor’s 35-year fight for dead mum
“For too long dementia has been something we just don’t want to think about. But the truth is it’s not just an old person’s disease. It’s not untreatable. It’s not an inevitable part of ageing.
“But just as decades of discussion around cancer has led to changes in our lives to reduce the risks, it’s time for dementia to move to the top of our health to-do list.
“We also need the bravery to have conversations with each other if we have concerns about possible signs of dementia, and with our GPs.”
Research conducted by News Corp’s Lighthouse Consumer Sentiment Tracker found more than one in three people (38 per cent) rates their knowledge of dementia and its early warning signs as low, while just 17 per cent say they would know exactly what to do or where to go for support after a dementia diagnosis.
“While we cannot change getting older, genetics or family history, scientific research suggests that looking after our brain health may make a big difference to reducing or delaying your risk of developing dementia,” Dementia Australia CEO Tanya Buchanan said.
Neurologist Associate Professor Rowena Mobbs called on Australians to “book a brain day” in their calendar.
“Make one day a year your brain health day to speak with your GP about your brain health, and catch up with the latest information on managing the 14 modifiable risk factors for dementia,” Assoc Prof Mobbs said.
Royal Australian College of GPs (RACGP) President Dr Michael Wright said when it comes to brain health “prevention is key”.
“Unfortunately, there’s no screening program and treatment for dementia. The Federal Government can help GPs reduce risk by expanding health assessment items,” Dr Wright said.
“We’ll continue to advocate for an expansion of these items to all patients.”
Renowned clinician, researcher, policy adviser and Co-Director of UNSW’s Centre for Healthy Brain Ageing (CHeBA), Scientia Professor Henry Brodaty said: “The fact that we can almost halve the risk for our brain losing its ability – our dementia risk – is something we can do something about.
“I don’t think people really grasp that idea,” Prof Brodaty said.
His colleague and CHeBA co-founder Scientia Professor Perminder Sachdev said dementia has been put in the too-hard basket.
“It’s been too big a problem for governments to fully come to terms really with it,” Prof Sachdev said.
“They’ve not grappled with it but you can’t avoid it, and it’s going to become more and more significant. Acting now can save much higher costs in the future”.
Back in her Port Macquarie garden, Ms Hawe delights in showing pictures of her much-loved children Kimberly, 37, and Henry, 30, and lights up when singing a song she recorded during music therapy for her two-year-old grandson Oscar “so he will know how much his Nanny loved him”.
“Nanny’s darling baby boy, I love you so,” she sings.
“Though distance may divide us, know I am always with you … time and tides may ebb and flow but my love you’ll come to know.”
While Alzheimers has robbed Ms Hawe of many things – including her marriage, work, and mobility – there’s one thing Al – as Ms Hawe calls it – is her fantastic sense of humour and free spirit.
“I don’t live with Al. Al lives with me’” she said.
“My world doesn’t revolve around my Alzheimer’s, he’s just here but he comes along for the ride”.
Ms Hawe, who is a member of Dementia Australia’s Advisory Committee, continues to advocate for those living with dementia.
“I’m still me and I will never let it define me,” she said.
“I will fight this with every last bit of my being.”
Originally published as ‘Act now’: Dementia is the biggest Aussie killer no one can afford to ignore
‘Embarrassed’: Top doctor’s sad cancer update
