For Theresa Flavin, the path to being diagnosed with early onset dementia started when she began making “awkward” mistakes at work.
First Ms Flavin, who was then in her early 40s and working for the finance watchdog APRA, began forgetting to include important people in email chains.
Then she began to make more noticeable slip-ups, like forgetting the name of the Westpac CEO at one meeting.
Soon, rumours began spreading around the office about what was to blame for Ms Flavin’s mistakes.
“I think for some time there might have been a little bit of whispering that maybe I was drinking, because people grasp for a reason why someone who has always been good is suddenly off her game, and badly,” the Sydney woman told news.com.au.
“It was depressing and scary, because I thought how can this be? I try so hard and the harder I try, the worse it got.”
Finally, there came a lapse in memory with a colleague so bad that Ms Flavin knew she had to seek professional help.
“We sat together at the same table for literally two years (and) I couldn’t remember her name,” she recalled.
“I’m sitting there about to have a conversation and there’s nothing. It’s like opening a drawer and there’s nothing in there.”
But the mystery didn’t end there as Ms Flavin saw doctor after doctor, who all claimed her memory loss was because of menopause or depression.
“That was even more frustrating, because I didn’t feel depressed,” she said. “I was irritated, angry even, but I wasn’t sad, I had everything in the whole world.”
It wasn’t until Ms Flavin sought the help of a doctor who had seen her annually for seven years as part of medical checks at her work that her memory loss claims were finally taken seriously.
A specialist then used an aptitude test Ms Flavin had taken years earlier at the beginning of her employment to diagnose her with early onset dementia.
Diagnosed at age 45, Ms Flavin said the news left her feeling “frozen”. It devastated her husband and five children, the youngest who was just seven at the time.
According to the Alzheimer’s Association, it’s still not known what exactly causes adults to develop dementia early on.
“Alzheimer’s is not just a disease that affects older adults,” Alzheimer’s Association chief science officer Dr Maria C. Carrillo said.
“Younger or early-onset Alzheimer’s disease affects people in their 40s or 50s. We don’t have all the answers as to why yet, but we do know there are strong genetic factors.”
With much of the data around dementia focusing on the elderly, the Alzheimer’s Association is funding a study in the US looking at early onset Alzheimer’s in people younger than 55 years of age.”
“The LEADS — or Longitudinal Early Onset Alzheimer’s disease Study — may provide information on what’s going on with late onset Alzheimer’s, as well,” Dr Carrillo said.
“It may very well be the same disease in younger and older people and that’s what we hope to find out in our efforts to find effective treatments and someway a cure.”
Determined to keep as much brain function as possible, Ms Flavin resigned from her job and now spends most of her day on home duties.
Ms Flavin has a support person with her during the day funded through the NDIS, who she says “comes in and scaffolds me”.
“I more or less have a day like anyone else at home, but she props me up with the little things … it means I can be a mum and wife as long as possible,” she said.
For many, Ms Flavin doesn’t seem like the typical persona with dementia, something she herself acknowledges.
“The way it effects me isn’t the way you’d expect, because I can still hold a conversation, I’ve still got intellect, I’ve still got all of that — but I could leave my handbag here,” she said.
The symptoms she struggles with most were having important tasks “drop off the edge” and have “no importance” in her memory.
“The biggest and most annoying thing is forgetting what I’m meant to do, and being unreliable that is just the worst feeling, you can’t control it … to all of a sudden not be meeting your obligations is confounding and destructive to your self esteem,” she said. “To feel that you can’t be relied upon any more is really hard.”
But there has been a silver lining to Ms Flavin’s diagnosis, which has seen her change her outlook on life to focus on how to “make memories in advance”.
“We hurried off and saw Egypt, which was amazing … and then maybe two years later we did a world cruise,” she said.
“Now we have these amazing memories of travelling together and seeing all these amazing places. So that’s the biggest impact, we don’t put things off anymore.”
Ms Flavin said she and her family were now trying to use getting her dementia diagnosis so early “to our benefit”.
“It’s like getting bad news early — at least you’ve got a chance to do what you can,” she said.