“People at work knew it wasn’t me and so did I,” he said.
Initially, the Queensland resident, who had been through a devastating bout of depression in 2006, worried that his symptoms might be related to another mental health episode.
After a suite of tests, however, Dare was diagnosed with frontal lobe dementia – also known as frontotemporal dementia (FTD) – which is a type of the illness more commonly diagnosed in people under the age of 65.
Dare said before the diagnosis, his previous understanding of dementia was that it mostly centred on memory loss.
This is a common misconception, Associate Professor Rowena Mobbs, one of Australia’s leading concussion and dementia physicians, said.
Mobbs – who is throwing her support behind news.com.au and the Australian’s Think Again campaign – said certain conditions can impact the cognitive networks in the brain that influence behaviour, something experts refer to as Behavioural and Psychological Symptoms in Dementia, or BPSD.
“BPSD is a significant cause of complications, including falls, hospitalisations, delirium, and over medication,” Mobbs said.
“If detected early, many of these issues can be prevented, allowing individuals to live better in the community and providing much relief to their loved ones.”
Associate Professor Rowena Mobbs is one of Australia’s leading concussion and dementia physicians. Photo / Justin Lloyd
More than 433,000 Australians are currently living with dementia, with the Australian Institute of Health and Welfare (AIHW) predicting this number to rise to one million by 2065.
About 29,000 people aged under 65 are currently living with younger-onset dementia, with that number predicted to rise by 41% to 41,000 people by 2054, according to figures from Dementia Australia and the Australian Institute of Health and Welfare (AIHW).
“It’s easy to get bogged down in the numbers, but that means that for the next 30 years, there’s going to be a new diagnosis of younger-onset dementia every single day in this country,” dementia expert Tim England from YOD Reflections said.
“It’s going to impact not only an individual, but their entire family, every single day for the next 30 years at the current rate.”
It’s why services such as YOD Reflections – a support service specifically for people living with younger-onset dementia – are so crucial, England said, because the needs of someone living with younger-onset dementia can differ greatly than someone diagnosed in their seventies or eighties.
“I’ve got a client who is 32, with a young family,” England said.
“For a lot of our clients, they’re grappling with a diagnosis while still trying to pay a mortgage, raise kids, make the school bus run. It’s a different set of considerations and it necessitates support for the entire family as well.”
Dementia expert Tim England.
England compares the current systemic support for dementia patients with those that exist for breast cancer patients.
“God forbid you get a diagnosis of breast cancer,” he said.
“What happens after diagnosis? In many cases, you have someone called a breast cancer nurse navigator who is assigned to you straight away to start getting things done, who can put you in touch with various supports and help navigate the services and requirements,” he said.
“That doesn’t happen with dementia. A lot of people are simply handed a diagnosis, then told to get their affairs in order. It can be very isolating.”
For Dare, who received his diagnosis in 2019, it was both a shock and a bittersweet relief.
“To be honest, it was a breath of fresh air, because it explained everything,” he said.
“It was as though I’d lost my filter and once I knew what was going on, I could work harder on correcting things. Before my diagnosis, I’d say the wrong thing, or something inappropriate or rude, and I wouldn’t care.
“Now, I realise and I can catch myself. When I yell at my partner, like I did the other night, I apologise very quickly.”
More than 433,000 Australians are currently living with dementia, with the Australian Institute of Health and Welfare (AIHW) predicting this number to rise to one million by 2065. Image / Australian Institute of Health and Welfare Dementia in Australia
Dare was able to continue working up until 2021, at which point the finer details of his job became too overwhelming and he resigned. He said that initially, the loss of the career identity that he’d had for more than half his life hit him harder than the initial diagnosis.
“I really withdrew in 2021 and early 2022,” he said.
“I just did not want to engage, I was worried about saying the wrong thing. Then I realised I’d done enough wallowing. I decided to get out in front of people and talk to as many people as I can about this disease.”
Now a member of Dementia Australia’s Advisory Committee, Dare is committed to raising awareness of the fact that people with younger-onset dementia can live fulfilling, independent lives with the right support and planning in place.
“I describe my brain as a duck on the surface of the water,” he said.
“It looks normal enough sailing along, but you can’t see how furiously the legs are paddling underneath.”
Dare said he’s now learnt to manage his symptoms by being more realistic about what he can do.
“I now regulate myself,” he said.
“I don’t drive a car in the afternoons. I don’t put myself in positions of being out late at night or anything like that, because I just can’t handle it.
“I’m very much aware now of what I do and while there are times I still can’t stop myself from doing some things and I get some looks, I’m better at acknowledging and explaining.”
And as for his old workmates – despite the incidents at work, there’s definitely no hard feelings.
“I still catch up for coffee with people I used to work with,” he said.
“They’ll have a chat and a laugh. They jokingly accuse me of playing ‘the dementia card’ when we’re together.”
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