Tully Smyth was just 14 years old when her mother was diagnosed with younger onset dementia. Now 32, Tully is a social media influencer, journalist, podcast host and a previous contestant on Big Brother Australia.
There is an estimated 27,800 people in Australia living with younger onset dementia, under the age of 65 years. Often parents of young children, a diagnosis of younger onset dementia can significantly impact the family dynamic and well-being.
“When my mother Kay was diagnosed, my youngest brother was only nine and our entire lives were thrown into disarray. It was frustrating, confusing and plain terrifying,” says Tully.
Dementia is primarily a disease affecting older people, making it difficult to get an early or timely diagnosis. Often the first clinical response is not cognitive decline but a psychological diagnosis of depression or stress. This delay in diagnosis can be an added complication causing additional frustration in an already difficult situation.
Thinking back, Tully remembers there were changes in her mother’s behaviour much earlier, which were put down to stress or being over-worked. It began with the little things.
“Mum would lose her car in the car park, forgetting which level she’d parked on. She would grab milk at the grocery store, not remembering we already had two full cartons in the fridge. She’d struggle to figure out how much change she was owed from a cafe or to recall the names of some of my friends,” explains Tully.
But it was her change in personality that was the most drastic. Being angry all the time and quick to start an argument or lose her temper.
“As a young teenager, I didn't have the maturity to grasp what was happening or the fact that what was happening wasn't her fault. It was all too much. Too serious. Too confronting.”
The stigma around what a diagnosis of dementia means affected Tully’s life as a teenager. She stopped inviting friends over after school, desperate to keep the family secret and embarrassed about what they might see.
As the dementia progressed these feelings moved to sadness with the family battling to cope with no support network.
“We didn't have a respite nurse. None of us were seeing psychologists. Looking back, I'm not sure how we managed but when you've got no other option, you just put your head down and keep going. This changed once a place opened up for mum in a care home.”
Tully now believes they kept her Mum at home for too long, for the health and well-being of both Kay and the family.
“It was extremely hard to find Mum a place at a care home. She was still physically young and able and required a staff member to monitor her because she was quite violent,” says Tully
“A lot of care homes simply didn't have the manpower and the few that did, we couldn't afford.”
After placing Kay in a couple of care homes that were not suitable due to distance to travel to visit regularly, or the care environment, Kay finally settled at Hammondville in New South Wales.
“It felt like home. The rooms felt cosy, there were sunny gardens and bright flowers and the staff felt like extended family members,” says Tully
In July last year, after a 23-year-long battle, Tully’s beautiful mum, Kay, passed away.
Tully will be sharing her experiences at the International Dementia Conference on day two in the panel session “Carers in conversation: Tomorrow might be better”. By hearing this session Tully hopes people realise there is help available.
“There are resources, support groups and people you can talk to. People who have been through the same experiences, trained nurses and carers that can lend a hand.”
“Tomorrow might be better but it also might not, and that's okay. Because we're all in this together.”