Dementia patient Christine Bryden continues to baffle doctors 20 years after diagnosis

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After being diagnosed with dementia nearly 20 years ago, Christine Bryden continues to baffle doctors as she battles the disease.

To receive a diagnosis of dementia is devastating for anyone, but when you are in the prime of your life it is particularly cruel.

Ms Bryden was 46 and at the peak of her career as a government adviser on science when she saw a doctor about her crippling migraines.

Diagnosed with Alzheimer's disease, she was told to leave her job immediately and to prepare to be incapacitated within five years. A second doctor confirmed the diagnosis.

"I can't describe how you feel at that moment," Ms Bryden told the ABC's Australian Story program.

"You're so traumatised. You're 46, you're a divorced mother of three young girls and you get told that you've got something like this and there's no cure."

I can't think of someone I've seen quite like [Christine]. I think she's remarkable. Professor John Hodges

That was in 1995. Nearly 20 years later, Ms Bryden has defied even the most optimistic prognoses.

She has written two books about her experiences and is working on a third, completed a post-graduate diploma, and is enjoying her 15th year of marriage to the man she met after she was diagnosed.

She also presents lectures around the world and has become a celebrity in Japan, where dementia is a huge social issue.

No-one there had heard someone with dementia talk publicly about their experience before and it caused a sensation. Her first television interview drew more than 10 million viewers.

"If someone looked at Christine's brain scan you would expect to see someone who was very impaired," said Professor John Hodges, from Neuroscience Research Australia.

"Christine is one of these puzzling cases of dementia that we don't really understand.

"I can't think of someone I've seen quite like her. I think she's remarkable."

Dementia progress slow but significant

Dementia is a not a specific disease. Rather it is the term used to describe a range of symptoms, including confusion, loss of memory, personality changes and an inability to perform everyday tasks.

It is not an inevitable result of ageing, although it is more common in those over 65.

Although Ms Bryden's decline has been remarkably slow it is nonetheless significant.

"Most days I feel like I'm clinging to the precipice with my fingernails," she said.

"I like the analogy of the swan. I'm gliding along and hopefully everybody sees this very normal person but underneath I'm paddling as fast as I can to stay afloat.

"There's a real sense of living only in the now because all I have is now.

"If someone says to me, 'Oh, we're going to do something in two hours' time', I don't have a sense of two hours."

Christine's eldest daughter, Ianthe Boden, says her mother's present condition must be seen in context.

"It's hard to explain to people how brilliant my mother was," Ms Boden said.

"People who know her now have said, 'You look OK, you sound fine, you can still do all of these things. Are you sure you have dementia or could it be something else?'

"That's just because people haven't experienced the brilliance of [my mother] beforehand."

Bryden giving a voice to dementia patients

The effort required for Ms Bryden to function relatively normally takes a huge toll.

"I've got a lot of brain missing but you can't see and I'm trying very hard to compensate, so people seem to assume I must be OK," Ms Bryden said.

"But it's just devastation afterwards. I just need to rest for a long period of time."

By describing what it is like to live with dementia, Ms Bryden has given a voice to dementia patients, who too often are stigmatised and disempowered.

"Right from the very beginning after my diagnosis I wanted to change the perception of people with dementia," Ms Bryden said.

"We were assumed to be diagnosed and shipped straight off to a nursing home. There was nothing in between, there was no support - just jokes, just isolation.

"If I'd had a stroke people would have given me rehab but nobody gives us rehab for dementia.

"Why not? We need daily rehab because we're constantly losing bits of brain."

Keeping brain active to survive

Ms Bryden believes that a combination of family, religious faith and medication has helped her survive and continue to function when so many others have not.

And she believes that by using her brain she has to some extent rewired what is there.

"Why am I surviving? Well I've tried to keep my brain active – writing books, giving talks, advocating, speaking to people, just desperately trying to hang on to what functions I have," she said.

It's a terrible diagnosis to have, but think positively. I really believe there's a new life to be lived in the slow lane of dementia. Christine Bryden

"I just have what I call constant rehab, constantly rewiring my brain so I can keep functioning for as long as possible."

Ms Boden explains it in terms of her mother making the remaining neurones in her brain talk to each other better.

"The issue with dementia is it's a steady decay. It's like swimming against the tide, but she's still swimming," she said.

"Because she's trying every single day, she's giving whatever's left in that skull of hers an opportunity to perform and to improve," she said.

Professor Hodges says there has not been much study into whether mental activity helps rewire the brains of those with dementia, but he does not dismiss the idea.

He believes in the future there are likely to be two approaches to treating dementia.

"One is disease specific - drugs that target the protein in that type of dementia," he said.

"The other is more ameliorating – improving function by general mental stimulation, things that enhance brain function generally."

The message Ms Bryden wants people to take away from her story is one of hope.

"It's a terrible diagnosis to have, but think positively," she said.

"I really believe there's a new life to be lived in the slow lane of dementia. Keep on trying the best you can."

Watch the full report on Australian Story at 8pm tonight on ABC1.

Topics: alzheimers-and-dementia, diseases-and-disorders, community-and-society, government-and-politics, health-policy, brain-and-nervous-system, australia

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