"Like every other mum, I hope that Scott will be able to live as normal a life as possible." Marjorie, Scott's mother.
Image: Scott stands next to Matt who is holding a fishing rod. Scott is smiling and holding his thumb up to the camera.
Marjorie, Scott’s mum and primary carer, took the time to speak to us about what life is like with an early dementia diagnosis, and how Life Without Barriers’ Mental health support services in South Australia have helped Scott and her navigate their new reality.
"I don’t know if he understands he’s changed; he’s never mentioned it to me," Marjorie said about Scott, who was diagnosed with early dementia two years ago. The illness was sudden and drastically changed both of their lives.
Marjorie is in her 80s and was enjoying a slower pace after years of responsibility as a dedicated working mum. She spent time with her children and grandchildren, took part in leisure activities, went out with friends and took the occasional holiday with the family.
At the beginning of 2023, Scott became noticeably ill and was in and out of the hospital a lot.
"My daughter, who works there, said to me after she had seen Scott, she could not believe the change in him."
Prior to becoming unwell, Scott had worked as an interstate driver, a painter and a removalist. He enjoyed jamming or listening to music, playing snooker and cricket, hanging with his mates and shooting the breeze until the early hours of the morning.
Scott wasn't one to display emotions. Instead, he tended to keep people at arm’s length. And although they lived under the same roof of their spacious family home, for the most part, Scott and Marjorie lived independent lives.
Almost overnight, all this changed. Scott became a different person, one who needed support in his day-to-day life.
"Nothing is the same," said Marjorie.
"Scott’s ‘overcoat’, as I call it, is what's left. His features are the same, his body is still the same, but what’s inside has changed."
"Those people who didn't know Scott in his younger years think Scott’s been like this all his life. And those people who knew Scott years ago, meeting him again now, they can’t believe this has happened."
Image: Scott stands in front of a brick wall, croched in position with a cricket bat.
Scott, now 51, openly shows his care and affection towards his mum, and he is friendly and warm to people he meets.
"Do you know why I don’t have grey hair?" Scott said, pointing to his full head of brown hair. Then, pointing to Marjorie, he said, "Cos she does all the worrying, so she has all the grey hair."
The truth is not far off, as Marjorie has now become Scott’s primary carer.
"I don’t go out nearly as much as I used to." Marjorie said about the impact this diagnosis has had on her and her family's lives.
Scott started receiving support from Life Without Barriers’ mental health team after another trip to the hospital.
"All I can say is, I am so happy that they’ve been there to support Scott," said Marjorie.
"Everyone who has been here to support Scott has been extremely good, extremely supportive."
"We’ve had Matt now for six months and he’s been absolutely marvellous."
Matt is a Community Rehab Support Worker with Life Without Barriers. With Matt, Scott reengages with his favourite pastimes. They play cricket in the backyard, a game Scott used to play with his dad.
"I hit dad on the head," Scott shared.
Matt helps Scott to hunt down his favourite music in second-hand stores, go fishing and do any errands that Scott needs to do.
"Scott looks at Matt as being his friend," said Marjorie.
Marjorie is happy with the easy rapport that Scott has with Matt and equally grateful for the respite their time together provides her.
Marjorie has applied for the NDIS, and Life Without Barriers has assisted her application with the evidence needed. She hopes that Scott will get funding for more support.
"Right now, Matt comes a couple of hours on Mondays and Fridays, and sometimes in between. With more support, maybe this could mean Matt could do a couple of hours every day, to go out, support Scott to do his chores, or to help Scott do a spot of cooking," she said.
Image: Scott and Matt stand together, adjusting the fishing line on his fishing rod.
"At my age, I don’t know how long I will be able to look forward. Like every other mum, I hope that Scott will be able to live as normal a life as possible. Whether he’s able to do that when he gets the extra help from NDIS, we’ll just have to wait and see."
When asked if she had any advice for carers of loved ones with early dementia, Marjorie shared what her doctor told her when Scott first arrived home.
"He said, ‘You have to have an extremely good sense of humour and that will keep you going on.’ Everybody’s different, so you won’t get two like Scott."
Life Without Barriers’ skilled Support Coordination team
Our team assists NDIS participants of all ages in turning their dreams into achievable goals by maximising their NDIS plan.
We offer NDIS Support Coordination and Specialist Support Coordination with local experts to navigate the NDIS. We also offer Psychosocial Recovery Coaching for those participants with a psychosocial disability who require support managing the complex challenges of daily living.
Our Support Coordination services are available nationwide, with the capacity to welcome new participants.
Connect with a support coordinator near you here.
