The heartbreaking disease Aussies are terrified of, but a diagnosis is not the end - this is what you must do

It's a heartbreaking illness but it's not an immediate death sentence and there's one thing that's vital to remember, writes Lollie Barr.

Lollie Barr (left) and with her mum (right).
Lollie and her mum are making beautiful memories together. Source: Supplied

In the four and a half years since my gorgeous, highly intelligent mum, who was once a high-powered executive assistant, was diagnosed with Alzheimer's at the age of 76, I have rarely seen positive stories about people living with the symptoms of dementia in the community when, in fact, two-thirds of people live in the community. So, I was entirely heartened as I watched a sweet video of Maureen and Jim, a delightful couple who have been married for 55 years, doing the rounds.

In the touching video, Jim is wearing a t-shirt that reads, "My beautiful wife has dementia. Please say 'HELLO' to her. We're very lucky. With dementia, I hear that people change their personality. But she's the same happy person." In an interview with the Manly Daily, Jim said, "My philosophy is that each day, I want to give Maureen the best day she can have."

So far, my mum, like Maureen, has become even kinder, sweeter and gentler. Thankfully, she lives without distress and still laughs at all the funny bits on her favourite comedy shows. While her symptoms have progressed, she is also very much out and about in her community, walking her dog daily and attending her weekly exercise class.

Jim and Maureen in their t-shirts.
NSW Premier Chris Minns recently shared a photo of Manly residents Jim and Maureen who have an innovative way of dealing with dementia. Source: Facebook/Chris Minns

Others living with dementia aren't so fortunate with their symptoms. It can be heartbreaking for them, and their carers and family, who may witness personality changes and, in some cases, scary delusions and paranoia.

For my mum, there are good and bad memory days and worse memory days, but she is at ease. She showers and dresses herself, and lives with her very supportive partner, who now does all the cooking and finances and organises their chores, which she helps with. It doesn't make it any less heartbreaking to watch her memory ebb away in front of my eyes, but thankfully she is totally unaware of the harrowing journey ahead.

What I've discovered is that it can be a long journey from diagnosis to home care, to long-term care and hospital stays, to eventual death. Shockingly, dementia is the second leading cause of death of all Australians and the leading cause of death for Australian women.

"It is a progressive condition," said Sophie Hennessy, General Manager of Client Services of Dementia Australia, who represents and advocates for the estimated more than 421,000 Australians living with dementia and the 1.6 million people involved in their care.

"As the disease progresses symptoms become stronger over time, but it's important to understand that that might happen over years. Just because someone has been diagnosed with dementia doesn't always mean they'll rapidly decline and lose the ability to do things."

However, what is usually depicted on television, film, or media are often extreme or progressed cases. Whenever I mention my mum has the disease, I’m always asked if she remembers me, which she certainly does with flying colours.

While there is no cure for the disease, research indicates staying active and engaged may slow the progression. My good friend, comedian Mandy Nolan, who developed a comedy program for dementia sufferers, gave me the best advice early on: do fun and enjoyable things with your mum because even if she doesn't remember, she'll get the feel-good endorphins.

While her long-term memory is gone, Mum is very much in the present, and despite our simplified conversation, we are still having a wonderful time together.

My mum, who lives in Sydney, and I have been creating the most beautiful memories, even if she can only remember them when I show her the photographs. As a lifelong music fan, we've gone to Tina Turner the Musical, and Frank Sinatra, and Frankie Valley tribute acts.

One of my favourite nights out was the Sydney International Elvis Festival, which we will return to in July. We also attended a Seniors Dance Theatre class at the Sydney Opera House run by renowned dance teacher Diane Busuttil of Creative Caring who runs terrific dance programs for people living with dementia.

Women dancing.
Diane Busuttil leads an all abilities dance class. Source: Supplied
Diane Busuttil of Creative Caring leading a dance class.
Diane (centre) leading a dance class. Source: Supplied

My mum is also trying things she's never done before. She found a talent for flower arranging and created the most exquisite bouquet under the gentle tutelage of conscious florist Dhani D'Arcy, of Florada Australia, who runs all-ability workshops. Mum was absorbed in Altitude Tea's Mindful Tea Ceremony with Cara Chen, so much so that I felt like I had my old mum back for half an hour.

Our favourite thing to do is visit dog parks all over Sydney. Dog lovers are the kindest people, and my mum can join in simple convivial conversations about her dog.

"There are many ways you can support someone by staying connected with activities and things they enjoy doing for fun and enjoyment," said Hennessy. She also recommends looking for ways to modify activities as the disease progresses. "Your loved one may not be able to play 18 holes of golf any more, but they can still putt in the house, or they may not be able to do Tai Chi in the park, but could do something seated.”

Elvis impersonator performs on stage.
Lollie's mum, a life-long music lover has enjoyed going to shows since her diagnosis. Source: Supplied

Maintaining social networks is critical, yet often, a diagnosis means people fall away, which I noticed in my mum's case even early on. "Research tells us that people can feel isolated and isolate themselves," said Hennessy. "This leads to stigma and discrimination, and that can have a real impact on people living with dementia, but also their support people."

Dementia Australia found that 32 per cent of Australians found people living with dementia frightening, an increase from the same research a decade prior.

But tragically, dementia is not going away anytime soon. Without a medical breakthrough, the number of people with dementia is expected to increase to more than 812,500 by 2054. However, what we can do is make our communities more dementia friendly and accepting of people with dementia. "Dementia is largely an invisible disease," said Hennessy. "Often what we can't see and don't understand, we're afraid of."

A flower arranging class (left) and a tea ceremony (right).
Flower arranging and a tea ceremony have been other activities which Lollie has enjoyed with her mum. Source: Supplied

There are also lessons to be learned from people suffering from dementia. As humans, our identities are wrapped up in our memories of the past and projections of the future, yet there's always the quest to live in the moment. With my mum, I'm being forced to live in the moment and there is something beautiful and life-affirming in that as I try to make her moments as fun, interesting and memorable as possible.

Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small. Or visit Dementia Australia.

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