Reason Aussies are missing opportunities for brain health assessment and dementia diagnosis
Jonathan Brown knows if he hadn’t sought help he’d either have been sacked, divorced or homeless by now. Possibly all three.
Jonathan Brown knows if he hadn’t sought help he’d either have been sacked, divorced or homeless by now. Possibly all three.
“I had a really rough run for several years,” the 57-year-old told news.com.au.
“I’d gone from being good at my job to not being good at my job. I’d gone from being happy to being shirty all the time and not knowing why. I knew there was something wrong but didn’t know what.”
It was while visiting a friend in Melbourne who was living with dementia that Mr Brown recognised the symptoms in himself.
On his return home, he shared his thoughts with wife Sophie.
“We were standing in the kitchen and I just said to my wife ‘I think I have dementia’ and she looked back across the kitchen at me and said “I think you do too’,” Mr Brown said.
“I said to people since I think they were the most caring, loving words I ever heard because it meant that she understood.”
The couple – who celebrated 25 years of marriage last year – went and saw their GP, who sent Mr Brown to a specialist.
He was initially told he was suffering from “mild cognitive impairment” and would need three months off work.
In reality, he would be forced to leave his once fast-past job as an engineer and adjust to a new life and new routine after being diagnosed with frontotemporal dementia (FTD).
He was just 55.
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Mr Brown is lending his support to Think Again, a national dementia campaign by news.com.au and The Australian aimed at changing the narrative that the condition only affects the elderly and is an inevitable part of ageing.
“For me to come to the realisation about dementia and be diagnosed was an enormous relief,” he said.
“It’s almost a life highlight to be diagnosed because from then I’ve been able to do things about it. It’s not scary at all because before was scary”.
Check-up millions are missing out on
While Mr Brown was grateful to receive his diagnosis, many other Australians are not so lucky. Experts say a “woefully out of date” Medicare system, and a lack of awareness around the importance of brain health mean Aussies are missing out on timely diagnoses.
The Federal Government offers four Medicare Benefits Schedule (MBS) item numbers allowing GPs to have longer consults with their patients – ranging from 30 minutes to an hour.
But just 90,869 Australians aged between 45 and 54 took advantage of these time-tiered health assessments and went to their GP for one in the last financial year.
The time-tiered health assessments are only available to a certain cohort of patients – including those aged 45-49 years (inclusive) “who are at risk of developing chronic disease”, and those aged 75+ – GPs argue that should not prevent people from raising concerns about their brain health with them.
According to the latest Census data, there are more than 3.24 millions Australians aged between 45 and 54.
Australian Medical Association President Dr Danielle McMullen said the Medicare rebate structure is “woefully out of date and incentivises short, sharp consultations”.
“Dementia, and especially early-onset dementia, is a complex condition that requires significant time to manage,” Dr McMullen told news.com.au.
“We are calling for a seven-tier Medicare rebate structure to support longer consultations, in response to the growing prevalence of chronic illness – and this includes dementia,” Dr McMullen said.
She urged people who don’t have a regular GP to “find one now”.
Victorian GP Dr Marita Long, who is also an Honorary Medical Adviser for Dementia Australia, said it is crucial the general public and medical professionals recognise brain health as an issue.
“We need a strategy for addressing risk assessment and that then will guide us to intervene for risk reduction. GPs are very good at providing primary prevention in other areas of health,” Dr Long.
“Once we have established patients who are at risk this will then helpfully assist us to better detect any early cognitive changes and lead to more timely diagnoses.
“Once someone has symptoms we can then commence secondary prevention to help slow the progress of the condition down,” Dr Long said.
“We just need a properly funded health care system that allows us to spend time to deliver effective health prevention to our patients.”
Neurologist Associate Professor Rowena Mobbs said: “We are already seeing a shift in general practice towards brain health as part of patient reviews, and these efforts should be supported and rewarded”.
“Neurological health is actually our number one target for reducing morbidity and mortality, with the potential economic benefits substantive if we get it right,” Assoc Prof Mobbs said.
“GPs can be part of this daily effort by incorporating brain health and dementia prevention into discussions on general wellbeing, choosing to perform cognitive screening and investigate for memory loss, and upholding key blood pressure and cholesterol targets for the prevention of vascular dementia.
‘It’s time to discuss prevention’
Leading dementia researcher Professor Henry Brodaty, who established the Centre for Healthy Brain Ageing (CHeBA) with colleague neuropsychiatrist Scientia Professor Parimendar Scachdev said more needs to be done to support GPs talking about dementia.
“GPs are terrific at managing cardiac health. They’ve done a great job. They always check your blood pressure, your cholesterol and your fasting sugar,” Prof Brodaty said.
“The whole notion of GPs doing preventive health is one that everyone agrees with, but it’s not always done well.
“I don’t know if the MBS item rebate system rewards prevention. It takes time to discuss prevention. GPs are constantly under time pressure. People go to a GP to fix a problem, not to discuss their health in general”.
Professor Sachdev said people often focused on their physical health “but not so much on brain health”.
“The kind of things that we need to do for brain health are not so different from what we need to do for general physical health,” Prof Sachdev said.
“There may be a few extra things that you need to do for brain health, but the other things that you need to do are generally common for health per se.
“You need behavioural change. Diet needs a behavioural change, cognitive activity needs a behavioural change …” he said.
“It’s not an easy prescription by a GP and often they don’t feel there’s the time or the expertise to deal with it. GPs often don’t think they can give dietary advice or physical exercise advice except for some broad principles.”
Prof Sachdev said people also often grappled with being time poor.
“You’re often time poor or you may not be thinking about old age when you’re 20 or 30 – you’re not thinking of your 70s as to what might happen, and you’ve got pressures of work, finances; you’ve got children or getting married or also setting up home. “Brain health is at the bottom of the list in terms of priorities. It’s ironic because good ageing is a lifelong process,” he said.
Dementia conversation needs to start much earlier
Dr Stephanie Daly is co-ordinator of the Royal Australian College of General Practitioners (RACGP) dementia subgroup. She also has personal experience with dementia after her dad was diagnosed with Alzheimer’s disease.
She said a common response is people feeling shame, which she wants to see banished.
She said there is so much stigma attached as people consider their brains as their entire sense of identity.
“If there’s anything not working in your brain, it really rocks that ability to feel whole as a person and one of the things I try and tell my patients and also anyone I know who’s experiencing these symptoms is it doesn’t change who you are. It’s actually a disability,” Dr Daly said.
She said often patients are scared to talk about changes to their brain or cognition due to fears of a loss of self and independence and there is a failure to talk about the disease in midlife “when there are actually some changes that you can make that will actually reduce your risk later in life”.
She said these conversations should be started when people enter their forties.
She believes the Medicare comprehensive health check needs to be more broadly advertised as most people would have a family history of chronic illness, while two thirds of the population are overweight and smoking and drinking alcohol also increases risks.
“The doctor isn’t bringing it up, the patient isn’t coming in and people don’t walk in all the time saying I’ve got a memory problem or I want to talk about my brain health,” she said. “More and more nearly everybody has got some relative who’s got dementia. If you’ve got a family member with dementia, you’re at greater risk, so that’s another reason to go for your 45-to-49-year-old health check.”
RACGP President Dr Michael Wright said “it’s never too early and never too late to act on dementia risk reduction and dementia prevention”.
“If you have concerns or just want some advice, make an appointment to see your GP. There is no substitute for the quality care you get from a GP who knows you and your history,” he said.
Dementia Australia’s Professor Tanya Buchanan said the Medicare item number does not talk about dementia or conditions of brain health as a chronic condition.
“As a result, it’s not a prompt to GPs to think about dementia as a chronic condition that we can address, and particularly in that late 40-year-old age group where it’s really important that we start thinking about protecting our brain health as we age,” Prof Buchanan said.
“We want to see GPs having those conversations with their patients about how to reduce people’s risks of dementia.”
For Mr Brown, frequent overseas travel for work has made way for netball games with his three daughters and more time with his wife Sophie, and the couple’s family and friends.
“There are the things that I can control and what they’ve said is that I need to exercise, eat well and do stuff. So I do,” he said.
“I exercise quite a lot – I go to the gym a couple of times a week, I try to do 10,000 steps a day, and I’m in a netball team with my three daughters.”
While Mr Brown and his family are learning to embrace the moment, he admits there are some things he is sad about. “The dementia – more than affecting memory affects reasoning and emotional intelligence,” he said
“Prior to being involved, I hadn’t really realised this.
“It is not uncommon for me to notice my wife is upset. I have now learnt to retrace my steps of the previous few hours to try to pinpoint what it is that I have (almost without fail) done to cause it.
“It is heartbreaking to me that I know I do this so frequently. The support of family and friends is key to me living well,” he said.
“Things have improved significantly for me after I was diagnosed and, sure, there are things that I am not looking forward to and the long-term future is not particularly rosy.
“And there are things that I just hate the idea of like I’ve got three daughters and I always looked forward to doing a speech at their weddings and now I’m at the recognition that’s unlikely to happen and that’s really upsetting,” he said.
But for now, Mr Brown – who is a Dementia Australia advocate – is living the best life he can and relishing each day with his family.
Originally published as Reason Aussies are missing opportunities for brain health assessment and dementia diagnosis
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