Why early onset dementia symptoms must be taken seriously

Ian Bristow and his wife Sue
Ian Bristow and his wife Sue

This article was sponsored by Dementia Australia

“My life has turned 360 degrees – out of workforce, no life partner by my side…”

Ian Bristow is not ill. But his partner is. In April 2013, his wife Sue was officially diagnosed with Alzheimer’s. She was 52 years old at the time. 

With minor incidents dating back to about 2008, it was in March of 2012 that it all came to a head.

Ian and Sue met as 18-year-olds at a concert at the Myer Music Bowl. They married six years later and have three children, aged 23, 26 and 28 years old.

Both passionate and much-loved teachers, Ian reflects on the many qualities that made Sue so well-loved.

“She had the ability to make anyone and everyone feel good about themselves, whether it was a close friend or the lady at the checkout at Coles,” he said.

“She was an incredible teacher… the control and captivation of the children in her classes was unbelievable, she made it all so much fun, but everyone knew not to mess with her.”

According to Dementia Australia, Alzheimer’s is the condition that will have the greatest social and economic impact on our time. With an estimated 425,416 Australians living with the disease, services have never been in higher demand.

Alzheimer’s is often associated with older people. This stigma is very real for Ian and his family with some of the closest people around him not believing at first that a 52 year old could be afflicted.

“Many very intelligent, world wise, knowledgeable people around me thought – oh well you know you will just have to get used to her forgetting things,” he says.

“No – Alzheimer’s is a death sentence – somewhere between five and 10 years to live.”

Precious family time is now just memories as the destructive illness meant Ian quit his job to care for Sue.

Flashing back to 2008, he recalls Sue backing into a neighbour’s car, forgetting to pick her children up, telling the same story, forgetting how to use things like a key, and driving to wrong locations.

By March 2015, Sue’s short term memory was very poor. Up until this time, Sue had been driving Ian to work. This allowed him to monitor her skills but also provided Sue with a degree of independence.

Teaching his beloved biology class, Ian vividly recalls looking out the window at 10am one day, to see Sue waiting to pick him up.

“I went out at recess, she said ‘hi love – I’ve come to pick you up,” he said.

Between this time and October 2016, Sue got progressively worse and slowly the behaviour that is often associated with Alzheimer’s began. Remembered as a great cook, Sue lost her cooking skills. She began falling over and wandering away.

Ian (left) with Memory Walk & Jog MCs David Sykes and Takaya Honda

Ian (left) with Memory Walk & Jog MCs David Sykes and Takaya Honda

During this time, Ian got Sue to begin taking a plethora of drugs to control a range of behaviours which included agitation, anger, paranoia, sadness and hallucinations. But her behaviour became more and more unpredictable.

By 2017, the behaviours escalated and became more erratic. This included hyperventilating, screaming the word ‘help’ at the top of her lungs, punching and throwing things at her family. So erratic, the family often considered calling the police and ambulance on numerous occasions.

“It was tough for everyone.”

Eventually the family had no choice but to seek a secure dementia facilities in the area, but no facilities catered for people with younger onset dementia. After a failed attempt at a care facility which saw the unpredictable behaviour continue, Sue was taken to an Emergency Department. The head doctor said that he had never seen a heightened state this bad, leaving her to enter a Psych ward in a nearby facility.

“Horrible but necessary,” Ian said. 

“She had a nurse one on one outside door, we were told to prepare for the worst,”

Today, Sue lives in a dementia facility which supports her needs. She is on a drug regime which aids to ease pain and keep her calm. She still recognises Ian and her beloved kids, and although she is often incoherent at times, there are moments of cognition.

“Still loves chocolate and a back scratch/rubs,” Ian explains.

“These have an immediate calming effect, she still enjoys things that smell nice… like cream, perfume etc.… anything sensory really.”

Ian can’t praise this particular high care facility enough. They have worked to keep her calm most of the time, and most importantly, happy at times. He begins volunteer work at the facility this week.

“She is surrounded by experienced trained mental health nurses,” Ian said.

“Even though Sue has no mental health illness, her dementia has affected her in a way that can be seen as almost psychotic sometimes.”

“It’s an ugly disease and affects everybody differently.”

At 57-years-old, Sue is estimated to be about the second youngest in the facility, with about six people being under the age of 65.

Despite the particular area of early onset being dramatically underfunded, Alzheimer’s Australia were great, providing resources, contacts, seminars and an early onset key worker which provided advice and offered direction.

In honour of Sue and her battles, Ian and his family took part in the Melbourne Memory Walk and Jog which was held on Sunday 22nd April at Westerfolds Park in Templestowe.

This park remains a special place for Ian as he fondly recalls walking with Sue and their loyal dog Charlie every Saturday morning for seven years.

Ian has raised just shy of $4,500 with all proceeds going towards Dementia Australia. The money will help provide vital support services such as counselling, support groups and education, whilst creating awareness that Alzheimer’s is not just an elderly person’s disease.

And whilst Ian and his family continue to spread awareness and fight for change, their love for Sue is something that will continue to inspire people every day.

“The sass of that woman (and still now) was astonishing… she was a very fit and very healthy lady and loved to take pride in her appearance,” Ian said.

“She was, and is truly beautiful…”

For more information or to get involved with Memory Walk & Jog, visit the website.

This article was sponsored by Dementia Australia

This story Why early onset dementia symptoms must be taken seriously first appeared on Newcastle Herald.