Jonathan Brown was sitting at his desk working on a project when suddenly he stopped typing mid-sentence.
For the 55-year-old senior mechanical engineer from Sydney, the report in front of him should have been a simple enough task to complete.
But he had completely frozen and was unable to continue.
‘It was like I was looking at a jigsaw and the pieces were from four or five different puzzles. I knew they were meant to fit together but I couldn’t figure it out,’ Jonathan, now 56, tells me.
‘I had to excuse myself from work and say something’s come up because I just couldn’t do it.’
This wasn’t the first time Jonathan had struggled with a work task he previously would have found easy.
The father-of-three had been managing multimillion-dollar projects and using detailed spreadsheets for the better part of his career, but for the past five years, he’d been finding things increasingly challenging.
The dense spreadsheets he’d once interpreted with ease had become difficult to read.
Jonathan Brown (right, with wife Sophie) was diagnosed with younger onset frontotemporal dementia in March last year. In the last five years, he’d noticed ‘strange’ changes to his behaviour and memory which he couldn’t understand
The dense spreadsheets he’d once interpreted with ease had become difficult to read
‘Work was becoming more and more difficult. I used to be very good at solving problems and making projects work and then it ceased to be a skill of mine,’ he says.
‘I could tell I was becoming less effective and when you’re in a senior position, that’s a real problem.’
Jonathan had begun to struggle in areas outside of work, too.
‘I’d noticed others things like not being able to remember the previous day’s football scores. It struck me that there were these things I couldn’t remember,’ he says.
At the time he ‘couldn’t understand’ what was happening, and initially wondered if he was suffering from depression despite waking up most days feeling happy.
He went to his GP and had ‘all sorts of tests’ which didn’t point to anything out of the ordinary.
It wasn’t until he went to help care for a friend who was suffering with dementia in late 2023 that the penny finally dropped.
Within ten minutes of being with the dementia patient, he became convinced that he too was suffering with the condition.
‘Later that day I realised I couldn’t remember aspects of the last three days. I could recall what had happened but not in the order in which things occurred,’ he says.
The couple cried together in the doctor’s office after being told the news, but in a way Jonathan was ‘relieved’ to finally have some answers
One evening in November 2023, he came home to find his wife Sophie standing in the kitchen and blurted out: ‘I think I have dementia.’
A brief moment of silence passed. She replied: ‘I think you do, too.’
Sophie, 53, had also noticed slight changes in his behaviour and thought it was odd.
After 25 years of marriage, the pair knew each other inside out and were accustomed to each other’s quirks.
‘When you’ve known someone for so long, you hear the same stories over and over again,’ she explains to me.
‘You know the words and phrases they use. So I started to notice Jonathan would use different words and would say “umm and ahh” or “stuff” a lot.’
In March 2024, Jonathan was diagnosed with younger onset frontotemporal dementia.
The couple cried together in the doctor’s office after being told the news, but in a way Jonathan was ‘relieved’ to finally have answers.
‘Being diagnosed meant I could start to understand what had been wrong for years,’ he says.
Now Jonathan lives knowing he’ll slowly start to lose parts of himself and core memories will begin to fade. He and his family know there is nothing they can do to stop the progression.
‘There’s no cure, no chemotherapy, no hospital visits, he’s not going to get better and we’ve had to learn to cope with that,’ Sophie says.
A year on from his diagnosis, the family has made certain changes to accommodate Jonathan’s needs.
Jonathan has been forced to retire early because he is unfit to work in his demanding senior role.
During conversations, he’s only able to concentrate on one topic at a time and forming sentences can be challenging.
In the few years before the diagnosis, family dinners had become a struggle for Jonathan, as his three daughters, aged 21, 19 and 18, would often talk at once, across a range of topics.
‘There would be four different conversations happening at once and I couldn’t keep up so I would get really frustrated and angry at myself,’ he says.
Sophie explained how sitting down and having dinner at the table was a cherished ritual for the family, but Jonathan had begun to get up and leave the moment he’d finished his meal.
‘It was really odd. We’d all think, “Oh, obviously he’s got something better to do,”‘ Sophie says.
‘We didn’t put the pieces together until after the diagnosis because what we realised was he wasn’t keeping up with the conversation. He just checked out.’
Now at dinner time the family makes a conscious effort to only have one person talking at the table at a time.
Jonathan has also ‘lost his ability’ to detect social cues in certain situations. For instance he tends to over talk and struggles keeping track of small details.
Jonathan has had to retire early and Sophie feels like she’s ‘living her 70s in her 50s’. Now the couple is prioritising travel and recently drove along the scenic Great Ocean Road in Victoria. (Jonathan is pictured at the Blue Mountains, outside Sydney, on a recent family outing)
Accepting a new reality
Jonathan and Sophie met in 1996 on a flight from Melbourne to Sydney. They were both running late and were seated next to each other at the back.
They started chatting and the rest is history.
When they got married, they planned to grow old together, as most couples do. But their love story isn’t going to end how they imagined it would.
Both Jonathan and Sophie have had to come to terms with the reality of his diagnosis.
‘I’m already grieving. I’m living my 70s in my 50s,’ says Sophie, who runs her own photography business.
The couple is now prioritising travel and will soon embark on a road trip down the Great Ocean Road in Victoria, and catch up with their own ageing parents.
While Gen X now tends to be referred to as ‘the sandwich generation’ – supporting both twenty-something children and retired parents – Sophie has the added pressure of caring for her husband, too.
‘It’s like a triple decker sandwich,’ Sophie says.
‘I’m supporting my three daughters, my parents and Jonathan. I’ve become the breadwinner, whereas before Jonathan was the main provider for the family. We’ve switched roles.’
For Jonathan the hardest part is coming to the realisation he is unlikely to hold his grandchildren or attend his daughters’ weddings.
Sophie’s challenge has been balancing all of her new caring responsibilities with taking care of herself.
‘I’m in for a marathon, so I need to take care of myself too to cope with this,’ Sophie tells me.
Soon after Jonathan’s diagnosis, the couple broke the news to family and friends who rallied together in support. Their daughters were in shock.
‘It is what it is. The only thing I can do to slow down the process is live well, and I have been,’ Jonathan says.
‘I’m fitter than ever, I’m eating well, I get an extra two hours of sleep a night, I challenge myself in different ways and I still do socialise.’
The couple now do their best to ‘live in the moment together’.
Since the diagnosis, Jonathan has had the opportunity to speak about dementia on television and at Parliament House.
Helping others with the same diagnosis is an opportunity for which he is grateful.
Now the couple advocate for Dementia Australia and wish to share an important message: you can live well with dementia.
‘One of the best things I’ve been told is to “keep his world as big as you can for as long as you can”, and I try to do that every day,’ Sophie says.
