Karen Cooke loves reading to her granddaughter Paityn. But with her memory faltering, it’s not always easy.
“Nanny,” Paityn says, looking up at her grandmother. “You already said that.”
It was incidents like this – the little things – that her family first started noticing.
Ms Cooke, 54, was diagnosed with early-onset dementia two years ago – a disease she describes as being like “a disco haze” going through her head.
“It was really confronting to start off with,” she said.
“I just don’t like the thought of not knowing what’s happening, which is what will happen.”
She now lives with her daughter Lexie and Paityn in Bendigo, and together they’ve made practical changes to deal with her memory loss.
It is the everyday situations that are most complicated for Ms Cooke.
But, according to researchers at the forefront of fighting the disease, there is hope.
The dementia tsunami
For Associate Professor Michael Woodward, from Melbourne-based specialist health service provider Austin Health, the push for better treatment could not come soon enough.
Dr Woodward believes the number of Australians diagnosed with dementia is set to skyrocket.
“People talk about the threats of the tsunami or global warming and terrorism,” Dr Woodward said.
“I think actually dementia and Alzheimer’s disease is the tsunami that’s sadly almost bearing down on us.
“We really need to do a lot to work out how we are going to combat it.”
For Ms Cooke, it comes in the form of a trial for a new medication called gantenerumab.
It is a monoclonal antibody – a protein made in a laboratory – that binds to substances in the body.
Doctors are optimistic this will be the wonder drug they have been waiting for.
Globally, there are several thousand participants involved in the trial. Ms Cooke is one of 21 patients being treated at Melbourne’s Austin Hospital.
The drug is designed to stick to a toxic protein called amyloid, found in the brains of people with dementia, and remove it.
Results from earlier trials of the drug have been disappointing, but in higher doses, researchers said it could slow the rate of cognitive decline in people with early-stage Alzheimer’s disease.
It will be at least two years before doctors know if the drug can improve people’s memory.
“And indeed, that we may even be able to show that the disease slows down.”
The ‘long goodbye’
For Linda Jackson, watching her mother struggle with dementia was painful.
“Someone described dementia as a long goodbye and it was a bit like that,” she said.
“I remember once or twice going into my mother’s house and she’d be sitting on the sofa looking out the window with this look on her face.
She just didn’t understand what was happening.
“She recognised us all until the end of her life, although she forgot nearly everything else.”
The 69-year-old from the Perth suburb of Mt Pleasant hasn’t demonstrated any symptoms of the disease, but her family history of the condition has made her wary.
And Ms Jackson is keen to do whatever she can to stop it happening to her.
“I don’t want anyone [to] have to go through that,” she said.
She’s just completed a trial of the drug Xanamem, which aims to stop Alzheimer’s by blocking the body’s production of the stress hormone cortisol.
“I hope that this drug proves to be really effective and that can really help, and in 10 years’ time when I might need it, it will be available.”
Medical experts now know that when cortisol levels are elevated for long periods, it can affect memory function.
“High levels of cortisol linked with stress and other processes are bad for our whole body, but may be particularly bad for our brain and may increase our risk of developing dementia,” Dr Woodward said.
Bill Ketelbey from drug maker Actinogen – the company behind Xanamem – said the early research had been promising.
“In our most recent study, what we showed was that giving 20 milligrams daily to a healthy, elderly population, we improved cognition rapidly and it persisted,” Dr Ketelbey said.
While experts are optimistic about the early results, they say evidence of the medication being effective in people with Alzheimer’s is needed before it can be widely prescribed.
The next trial will be on people who have the early signs of Alzheimer’s disease.
Ms Jackson, who has been taking the pills for 12 weeks, is hopeful.
“Anything that can improve people’s chances and find some sort of cure, you know, is just vital,” she said.
Making the most of it
Back in Bendigo, Karen Cooke is doing more than just waiting for a miracle.
She’s convinced staying active keeps her brain sharp – and according to the evidence, she’s right.
So she plays competitive table tennis, walks up to 20 kilometres every day, and goes to the gym.
“If I don’t exercise, I’m lucky if I can string a sentence together. I really, really struggle,” she said.
“But the more oxygen I get into the brain, the almost ‘normal’ I feel.
“I am definitely not looking forward to going to a nursing home. Not on your life.
“That will be the next step for me. It’s my job now to try and stay here as long as I can make the most of it.”