At 55 some people are reaching the height of their careers. Some are enjoying watching their families grow. Some are taking long service leave and exploring the world.
At 55 John Bartninkaitis was diagnosed with younger onset dementia.
A few days later John and his wife Katrina found out she was pregnant.
“I can stand here and swear, stand here and sulk as much as I want and that won’t change what’s happening,” John said.
Dementia is a degenerative disease, and the second leading cause of death in Australia.
There are more than 100 types of dementia, each with their own causes and symptoms. While there is medication that can reduce the symptoms of dementia, it doesn’t work for all and there is no cure.
Research released on Tuesday has paved the way for an Australian trial of a new treatment for Alzheimer’s disease, a form of dementia.
The research showed a link between high iron levels in the brain and the presence of an Alzheimer’s protein, amyloid. Researchers are excited by the possible treatment options this opens for people with Alzheimer’s.
But it is still a long way to a reliable treatment option.
Two years on from his diagnosis, in their Poatina home, John and Katrina sat over steaming cups of tea and recalled how their lives have changed.
In my guts, my heart of hearts I knew John was struggling and I just didn’t know why.
“In my guts, my heart of hearts I knew John was struggling and I just didn’t know why,” Katrina said.
The thought of dementia only crossed their minds when John, a diabetic, accidentally overdosed on insulin twice – he had forgotten he already had taken a dose.
Even then it was said as half a joke.
One of the key challenges for those with younger onset dementia often is securing a diagnosis.
Alzheimer’s Australia Tasmania’s younger onset dementia key worker Erica Pugh said it is often misdiagnosed as anxiety or depression.
John was repeatedly told to adjust medication he was taking for depression in an effort to combat the symptoms which were in fact his dementia.
He said when he finally did receive a diagnosis of frontotemporal lobe dementia it was a relief.
“Because I knew I wasn’t going crazy,” he said.
Mrs Pugh said this is often the case with those who have younger onset dementia.
John and Katrina describe it as looking for horses not zebras – doctors don’t go first to the unusual. There are far fewer cases of younger onset dementia than normal dementia in Tasmania.
Prior to diagnosis John’s personality and behaviour shifts were put aside by the family as “grumpy old man syndrome”.
But John has deteriorated since the diagnosis, with a range of symptoms beyond just memory loss.
He started freezing, as though playing musical statues, and needs to be touched to kick start his brain again.
John said sometimes his brain is still switched on while this is happening, but his body won’t respond, at other times it’s like he has checked out.
Like many with younger onset dementia, John has had to give up a lot of independance. He has had to walk away from his business and is no longer working and has handed in his license.
Finding a reason to get out of bed can be hard, and John finds he struggles with motivation now.
Some of this is because he is losing his ability to plan the day in front of him, he just can’t see what there is to do in the day ahead.
He describes it as though the starter motor in his brain has stopped.
With five children still at home with John and Katrina, he finds it frustrating he can’t do the things we would have liked to with his children.
The dementia has made him intolerant of noise and he tires easily.
They have been honest and open with their children, explaining what is happening to their dad, who has an estimated 10 years from diagnosis – maximum.
They understand that Daddy’s brain is dying and eventually he will go into a nursing home and not come back.
“They understand that Daddy’s brain is dying and eventually he will go into a nursing home and not come back,” Katrina said.
“It’s about making memories [with John] now … so they’ve got the memories for later.”
John and Katrina are investigating nursing homes now, so John has time to become accustomed to them, and to know and trust the staff, before he loses all cognitive facilities.
A difficulty for those with younger onset dementia can often be finding themselves in nursing homes with much older residents, where it can be difficult for their families to visit.
Mrs Pugh said even getting into nursing homes can be a challenge, as many ask why someone so young needs a place.
John, Katrina and their children will focus on the remaining time they have together.
- For more information visit tas.fightdementia.org.au