Seniors Housing & Healthcare Trends

MELBOURNE: Diane and Misha Siljanovic playfully joke with each other as they reminisce about years of the past. With 50 years of marriage under their belts, there’s a lot to choose from.

Their lightheartedness serves in complete contrast to where their lives were just two years ago when Mr Siljanovic was bluntly told he had dementia.

“Nobody talks to you about dementia,” Mr Siljanovic said.

“You don’t just go to the doctor and say: ‘Oh, I can’t remember things.’ You go there and say something hurts, not that something’s happening with your brain. So I ignored it for a long time.”

When he started experiencing bouts of forgetfulness, his GP referred him to a geriatrician who made the diagnosis.

“It was difficult because I suddenly felt like I became a very ill person,” Mr Siljanovic said.

Ms Siljanovic said her husband’s diagnosis was made worse by the specialist’s poor bedside manner, which lacked advice and empathy.

“The geriatrician just said: ‘Oh, it’s probably Alzheimer’s’, and she gave us a piece of paper with the number for Dementia Australia on it, but that’s as far as we got,” she said.

The couple kept pressing for more information and help.

“When we first pushed, she just asked what Misha wanted to do and he had to say that what he wanted was medical advice.

“I mean, it was just terrible. Imagine if someone was diagnosed with cancer and instead of empathy and treatment options they got asked what they thought they should do next. It wouldn’t happen.

“We were both very shocked at that point because we thought this was going to be an instant change of life and a terrible situation, but it hasn’t been like that at all. But we didn’t know that back then.”

What changed was when a distressed Ms Siljanovic called a nurse named Christine, who works in dementia care at aged care and community services provider Uniting. Little did they know it then, but that call would be a game changer for all the right reasons.

Dementia has been the leading cause of death in Australia for the past two years, and newly released data from the Australian Bureau of Statistics shows it now accounts for more than one in every 10 deaths.

Improved diagnostics, increased awareness and the introduction of disease-modifying medications for some people with early stage Alzheimer’s disease mean patients are living with dementia for longer. With the right help, many can live better for longer.

However, without major work to reduce cases and to educate patients and the community about how to care for people with the disease, there is a real risk the nation’s aged care system will come under even more pressure in the years ahead.

That reality prompted a group of healthcare providers at Uniting to consider what they could do to educate and empower dementia patients and their families so patients could remain at home for longer.

“There was a lot of evidence around rehab, and rehab is something that people with dementia, in my experience, were automatically shut out of because everyone thought: ‘Well, they can’t set goals, they can’t keep track of what they’re supposed to do, so we won’t bother rehabbing them’, and that’s just so wrong,” clinical nurse consultant Christine Sender-Ivanov said.

She’s the same nurse who picked up the phone when Ms Siljanovic called for help.

Together with her team, she co-developed Australia’s first evidence-based post-diagnostic dementia rehabilitation, education and support program for people with dementia and their loved ones. It’s called iREADi and operates out of three sites in Sydney, and there are hopes for further expansion.

Each rehab course has two phases. The first lasts nine weeks and requires the patient and a loved one or carer to attend a weekly lesson that provides education and practical tips based on four pillars of memory, emotions, sleep and orientation.

They learn about the brain and characteristics of the disease and what to expect as it progresses, as well as ways to enhance the parts of the brain that aren’t affected by the disease.

The second phase lasts three months and allows the patient to work with a medical expert to set goals and learn ways to achieve them.

It’s the type of support service people working in dementia say is needed on a much larger scale.

“Rehab’s not about getting back to what you were before, it’s about finding areas that you’re not doing so well any more and figuring out how we can circumnavigate those issues so that you can keep travelling around the community,” Ms Sender-Ivanov said.

“These people have just been shot in the head with a major diagnosis and they’ve just got no pathway to follow, nothing to do, no awareness of how they can keep control, how they can stay independent, confident, happy; all of those sorts of things are just taken away from them.

“There’s a lot of services out there for people that are living with more moderate stages to more advanced stages, but nothing for early stages.”

Paul Pryor is four weeks into his rehabilitation course, which he attends with his daughter Pippa.

“When I was diagnosed I wasn’t too concerned,” he said.

“At 87, I’m not worried about it. But I like living alone. I’m close to the shops, close to medical treatment, Pip’s nearby, and I’ve got a neighbour next door who I know, I’ve gotten subscriptions to the opera and I love going to the Ritz cinema.”

Mr Pryor was born in Sydney but lived throughout NSW as a child following the death of his father and, later, his mother while he was still young. His extended family continued to love and care for him, but the pain of losing both parents at a young age is still evident today.

During his earlier years, Mr Pryor worked in law and travelled extensively. He met and married his beloved wife, Jacqueline, in 1969 and the couple had two daughters, who both live in Sydney. Sadly, Jacqueline died from lymphoma 10 years ago.

Still, Mr Pryor has worked to maintain his independence and loves nothing more than a good routine. His most important one is his daily walk.

“I like to do a walk in the afternoon and I’m a bit obsessive about it,” he says, laughing. “If I can, I’ll do 4km a day. I take my phone and I’ve got a routine of where I go.”

Part way through his walk, he likes to sit on a park bench and snack on a mandarin as he watches the world go by. He’s in nature, and happy and content.

He was diagnosed with dementia only in April and is still learning about what to expect. So is his daughter, thanks to the hospital program.

“It’s been excellent, actually, Dad looks forward to it and it’s a nice time spent together,” she said.

“Today there was practical advice about strategies and tools, and we were shown technology we weren’t aware of that could be useful.

“Last week we separated into two groups and at the end of that session we went in to see how you guys were getting on, and all of the people with cognitive impairments were brightened and happy and having a blast, and we had found our session really helpful and affirming, just with peer support and connecting with other people.

“I’m the meat in the sandwich generation. Dad’s very easy but from time to time I need help with things and this is very much about making sure that we’re navigating the system and we have what we need when we need it.”

Even though he’s only part way through the program, Mr Pryor already knows what his end goal will be.

“The one thing I would dread is going into a home,” he said. “What is my hope? That I’ll have enough strategies to continue living at home. That’s all I want to do.”

The Siljanovics know their world is changing as the disease progresses, but they feel more equipped to understand those changes and adapt to them.

“I think the best thing I learnt was to focus on the positives of what you can do rather than be depressed about something that you can’t do,” Ms Siljanovic said.

“We’re under no misconceptions about things getting worse, but the way we live our lives now is great.

“The course was really empowering because as day-to-day things happen you kind of understand a bit about why they happen now.”

Mr Siljanovic then chimed in with a joke: “The course was so good, she wishes she could get dementia too!”

The iREADi program was launched at War Memorial Hospital in Sydney’s eastern suburbs, an aged care rehabilitation facility, and it has since expanded to Calvary Health Care Kogarah Hospital, with another service starting at Royal North Shore Hospital this month.