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The long goodbye

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The long goodbye

More than one million Australians care for a loved one with dementia. With Dementia Action Week underway from September 16–22, My Weekly Preview talks to Sunshine Coast locals affected by the disease.

Many moons ago, before the word dementia had ever entered their minds, Stuart Scanlan and Sue Roll used to surf together. Their favourite place to catch a wave was Moffat Beach, and they were a young, fun-loving couple in their early twenties with long lives ahead of them.

Now, in their fifties, the insidious disease that affects almost half a million Australians is slowly erasing the happy future they had planned.

In March this year, the painful decision was made to move Mr Scanlan into a care facility, St Mary’s Aged Care at Pelican Waters. Ms Roll visits him there almost every day.

“Stuart almost can’t speak anymore,” Ms Roll says. “He has almost lost all of his vocabulary. But you’ll see a sparkle in his eye. He bends down and kisses the top of my head. Once a week he might say ‘I love you’.

“We hang out, we dance to Neil Young and Ed Sheeran, I read to him, we sing and he hums along to the tunes because he can’t say the words anymore. But he knows.

“When that last synapse still connects and you see the smile on their face, you see the recognition in their eyes. You go for that spark of when he has that recognition and you go because you love him.”

It’s a heartbreaking story and one that many will relate to. Dementia Australia says an estimated 1.5 million people in Australia are involved in the care of someone living with dementia, the second leading cause of death in Australia.

Dementia isn’t one disease but a collection of symptoms caused by disorders affecting the brain. It affects thinking, behaviour and the ability to perform everyday tasks and there is no known cure.

Ms Roll and Mr Scanlan’s story is particularly bittersweet because their love blossomed only after his dementia diagnosis. After their initial romance in their twenties, they drifted apart. Mr Scanlan became a vet, married and had two children. Ms Roll became a physiotherapist who runs busy practices in Caloundra and Brisbane.

In 2012, when he was only 47, he contacted her out of the blue to say something was wrong. He had been having difficulty getting the doses of medication right for the various animals he treated and had spent two weeks at The Wesley Hospital in Brisbane having tests. He thought he had mad cow disease and feared he was going to die. He’d never forgotten Ms Roll and wanted to reconnect.

“I didn’t have any relationship on the radar,” she says. “We had dinner and started spending time together. A few months later he received the diagnosis of frontotemporal dementia. It was devastating for Stuart and for myself. He was just a beautiful man who had done everything right in his life.

“In the beginning we just couldn’t believe the diagnosis was true,” she says. “You just can’t believe it’s really happening to you. The next feeling you go into is helplessness.

“There’s no treatment for frontotemporal dementia; you’re just told to live with it and all you’ve got is diet and exercise. He then went into the phase of ‘why me’? Then the devastation that it could potentially be a genetic disease and his kids could be affected.

“Everyone asks me if we got together after we knew he had dementia and I say we did. We just decided we’d do what we could do and have as good a time for as long as we could. We were inseparable. He needed me and I adored him, because he’s such a beautiful, gentle, kind and caring man.

“He has just turned 56 and we have tried to pack a lifetime of hopes and dreams into a shorter time frame. You learn not to take anything for granted – some people never learn that in a lifetime.”

The pair became engaged and decided to travel and make as many memories as they could together while they still could. They took multiple trips to Europe, went skiing at Perisher and drove across the Gibson Desert to swim with whale sharks in Exmouth.

“We love camping but things became too difficult to camp in a normal campground because if we were parked 10 metres from the toilet block, Stuart wouldn’t be able to find his way back to the camp. So we organised for a four-wheel drive expedition truck to be built with a toilet and shower in it. We went up to Fraser Island, Double Island Point and across the Gibson Desert in July last year. It was a fantastic experience that he loved.

“We took lots of photos to help his memory as long as possible. He was forgetting how to swim and he had to have pool noodles and flotation devices. He was dropped as close to the whale sharks as we could get and he was so excited. For Stuart, it was the trip of a lifetime.”

Sadly, Ms Roll knew there would come a point where Mr Scanlan would need to go into care, a gut-wrenching decision for many families. “Towards the later stage, the question he’d always ask is, ‘what’s going to happen to me?’ I’d say, ‘we’ll always be together and we’ll have as much care at home as we can’. When it comes time for that decision of going into care, it’s a combined decision of family and the medical team.

“It was excruciatingly difficult because you always think you’ll have that little bit longer. It’s the hardest thing I’ve ever had to do. It feels like you’re taking someone to their own funeral, even though they haven’t died.”

Now, six months later, Ms Roll sees it differently. She has nothing but praise and admiration for the staff at St Mary’s Aged Care in Pelican Waters and she’d like to get the message out that despite negative press, there are wonderful aged-care facilities.

“I visit nearly every day. I visit at different times of the day and every time I’m there, it is immaculate, it’s clean, it’s tidy. They treat all residents with dignity and respect. The residents are always dressed every day; they’re in clean clothes. Every effort is made when they’re being fed to keep them clean, their beds are made straight away in the morning. There’s a lot of fear in having to go into care and if I knew then what I know now about the amazing quality of care provided, then I wouldn’t have been so frightened.

“We’re also incredibly grateful for our amazing support network of family and friends. The support and care we have received from those around us, it just reminds you how amazing the human spirit is.

“Our journey is not over and I hope it’s not over for a while. Dementia is a devastatingly terrible disease and for the families who are just starting out with early onset dementia, it’s just so important to do as much as you can do as soon as you can do it. To create the memories, to enjoy the time you have together and have no regrets. Two significant things I’ve learned on my journey with Stuart is the capacity of the human spirit and that true love has no boundaries.”

The stats

Dementia is the second leading cause of death of Australians.

Women account for 64.5 per cent of all dementia-related deaths.

In 2019, there are an estimated 447,115 Australians living with dementia.

Currently an estimated 250 people are joining the population with dementia each day.

Three in 10 people over the age of 85 and almost one in 10 people over 65 have dementia.

In 2019, there are an estimated 27,247 people with younger onset dementia.

By 2025, dementia is predicted to cost Australia more than $18.7 billion in today’s dollars.

People with dementia account for 52 per cent of all residents in residential aged-care facilities.

For support, call the National Dementia Helpline on 1800 100 500.

 

Mooloolaba man John Diedrichs’ wife Louise began experiencing memory loss and difficulty with everyday tasks at the age of 50, but it wasn’t until the age of 55 that she was diagnosed with younger onset dementia. She is now 65, they’ve been married for 30 years and the past 15 have been marked by a steady decline in Mrs Diedrichs’ state.

“She was a really smart person, really articulate,” says Mr Diedrichs. “She couldn’t understand why she couldn’t do simple tasks like answering the phone and filing. She’d get a job and come home in tears saying ‘I can’t understand why I can’t do this’. Back then, we didn’t know what it was. We had never heard of early onset dementia.

“One of the last straws was going to the doctor to see what we could do about it. We were just about to leave and he called her back in and got her to do a really simple cognitive test. She had to draw a circle of a clock and draw in the hands and numbers. She couldn’t do it. The penny dropped and it was a real shock.”

Through Dementia Australia, Mr Diedrichs joined a group of carers looking after partners living with younger onset dementia and found the support network invaluable.

“Just being able to talk with others and share tips and advice was so helpful,” he says.

“It’s the simple things that can make a difference. People with dementia can have a problem with depth perception. Finding the toilet can be difficult if it’s a white toilet seat in a bathroom with white tiles. I went to Bunnings and bought a really bright toilet seat and it made it easier for a while. Little things like that.”

Mr Diedrichs was the general manager of an IT company when his wife became ill and when it became unmanageable, he took a year off to care for her.

“When you’re living with someone with dementia it’s a slow process, you slide into it and it just becomes part of the process of what you have to do,” he says. “We had a saying, if you get to laugh once a day, that was the goal and we pretty much did.”

Mrs Diedrichs recently went into permanent care at Buderim Views Aged Care.

“I looked after her at home as long as I could,” Mr Diedrichs says. “Even now in permanent care, we have a bit of a giggle. You can’t have a coherent conversation, but she’ll give me a look like, I know you’re okay. I don’t really know who you are, but I know you’re okay. Last week she called my name, but usually she doesn’t.

“The first week of leaving her there and having to walk out was really, really hard. One of the staff pulled me aside and said, ‘you had to turn your back and walk out on your wife. What you didn’t see was she was upset, but two minutes later, she was like – oh look, a bird’. It’s like dropping a kid off at kindy.”

While he still brings his wife home for weekly visits, after 15 years of looking after a partner with dementia, he now has the freedom to live his own life and feels it’s okay to look for love again.

“You lose what you had; it doesn’t exist anymore,” he says.

“You make sure your partner is being looked after and is happy, but you still need to move on with your life. Once you’re freed up you can go back to work and perhaps moving forward, even look at a new relationship.”

 

Did you know?

There are many different forms of dementia and each has its own causes. The most common types of dementia are Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, frontotemporal lobar degeneration (FTLD), Huntington’s disease, alcohol-related dementia (Korsakoff’s syndrome) and Creutzfeldt-Jakob disease.

 

Local Institute leads research

The Sunshine Coast Mind & Neuroscience – Thompson Institute at Birtinya is at the forefront of dementia research. Its new Healthy Brain Ageing Clinic will officially open in October and will offer one of the biggest dementia research facilities in Australia, free and open to the public.

The Wilson Foundation has donated $1.5 million to kickstart the program.

“Anyone can come into the clinic for free and get an assessment and we’ll give them their risk factor for dementia,” says institute director, Professor Jim Lagopoulos.

“It’s not a diagnosis, it’s a risk assessment. Once we have that, we can put them into some clinical trials looking at the effectiveness of four interventions.”

Those interventions are nutrition, exercise, sleep hygiene and brain training or mindfulness meditation.

“There is very strong evidence to show changes to diet can have an impact on your risk profile for dementia,” says Prof Lagopoulos.

Professor Lagopoulos also says there’s strong evidence that aerobic exercise and group exercise may help. “Part of that involves social connectedness. That social connection also has very strong clinical evidence – it reduces dementia risk profile. We really want people to socially connect with other people; that is good for your brain.”

Sleep is vitally important when it comes to dementia and according to Prof Lagopoulos, improving sleep can in some cases reduce the risk of dementia by up to 20 per cent.

The institute is also studying the effectiveness of mindfulness meditation on dementia, with excellent results.

“Forgetfulness is an early warning sign of dementia,” Prof Lagopoulos says. “One of my PhD students did his thesis on mindfulness and mild cognitive impairment and we saw a dramatic improvement of memory symptoms using a very specific mindfulness framework.”

It’s hoped the Healthy Brain Ageing Clinic’s early intervention treatments could delay, or even reverse, the damage that leads to dementia.

“Behind all of these interventions is a very sophisticated neurobiological platform,” he says. “We have MRIs, blood tests, EEGs, sophisticated genetic and molecular tests. It’s going to be one of the most sophisticated dementia programs in Australia and across the world.

“To be diagnosed with dementia is a long, convoluted process littered with uncertainty.

“And it is often difficult to get a consensus among clinicians, leading to differing opinions. The brain imaging we’re doing is trying to add certainty to that, just like you can get an MRI to get certainty of diagnosis with a brain tumour.

“At the moment, the gold standard medical way to see dementia changes in the brain is doing PET imaging. We don’t do PET imaging here, but we are developing a different technique that looks at the glymphatic system in the brain. The glymphatic system is essential for eliminating the build-up of toxins and one hypothesis is that dementia is a result of impairements in this detoxification system.

“We want to look at the mechanisms that are affected and how it leads us down the path to dementia. We are developing a test to look at the glymphatic system using an MRI scanner to look at the brain’s microstructure, using a technique that tests blood flow in the brain. It all comes to us as pictures and using sophisticated algorithms, we can examine the relative health of the system. No one else is doing this in Australia.”

Visit usc.edu.au/sunshine-coast-mind-neuroscience-thompson-institute.

 

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Leigh Robshaw is a journalist who has worked in the media industry for more than 20 years. Originally from Sydney, she has lived and worked in London, Tokyo and Latin America. She joined the team in 2012 and is MWP's deputy editor. Writing, reading and travel are her greatest passions.

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