There is currently no treatment or cure for dementia – the second leading cause of death in Australia, the leading cause of death for Australian women, and a disease that affects almost one in 10 people over the age of 65. Now a UQ breakthrough is offering hope to millions around the world.
When his wife Glenys Petrie was seriously injured in a car crash in 2008, John Quinn stepped up to care for her – thankful that he had the time to be at her side.
With John’s support Glenys recovered, but it was a bitter journey and one that promised no easy end. Because at the time of the accident, Glenys had been caring for John.
Only weeks earlier, John had been forced to take extended sick leave from work because of difficulty with planning, making decisions and problem solving, symptoms the then 57-year-old would later learn were a result of younger-onset Alzheimer’s disease.
John’s world stopped when he was eventually diagnosed in 2010. Alzheimer’s, he thought, was an old person’s disease. He remembered his mother “fading away” in a nursing home and how the disease stripped her of her dignity as well as her memory.
Once an enthusiastic school principal whose personal identity was fused with the intellectual satisfaction of his job, John found himself sinking.
“I felt a deep sense of hopelessness and despair. I was in a deep hole and just sat in my chair not showing any emotions, staring at the four walls and wondering what my life would be,” he said.
John (Bachelor of Commerce ’86) felt humiliated by the stigma of Alzheimer’s and that for him there was no way out. He “hit rock bottom” and felt that he had betrayed his family by failing as the primary breadwinner.
“My darkest moments lasted six years. It took two years to tell my son. I didn’t know what to tell him, I was so ashamed.”
Glenys said the journey after John’s health began to decline was arduous for the whole family.
“My car accident was just six weeks after John had to leave work, so while he was coping with his own illness he also became my carer,” she said.
“He had to take on the task of physically lifting and assisting me while I recovered. My recovery is ongoing, but where my injuries were predominantly physical, John’s are mostly hidden.
“We have worked together to push and support each other in our recoveries.
“We coined this term ‘care partners’ and, at the time, we didn’t even know the term was a part of the modern lexicon for those living with dementia until we became more involved with community initiatives.
“John and I still support each other. He is my rock and our focus now is on living the best possible life we both can.
“John is very active and we have a vibrant life, but the shadow of dementia is something that continues to haunt us even in the happiest of times.”
Alzheimer’s is the most common form of dementia, and accounts for up to 80 per cent of all dementia cases. It can mean a long and slow descent into senility, then death. There is no cure or treatment.
Finding a cure is the powerful dream that occupies the waking hours of Professor Pankaj Sah and his team of researchers at UQ’s Queensland Brain Institute (QBI).
The stakes are high, not just for John and Glenys but for the 1.1 million Australians whose lives will be diminished by the disease by 2056.
Sah described how an unexpected UQ discovery is turning the dream of a cure into reality.
“We were using ultrasound to open blood vessels to deliver drugs into the brain, but it turned out the ultrasound cleared the plaque away even without the drug,” Sah said.
It is a discovery that has the potential to reverse Alzheimer’s symptoms, restore memories and give hope to millions around the world.
“The word ‘breakthrough’ is often misused,” Sah said, “but in this case I think this really does fundamentally change our understanding of how to treat this disease and other diseases as well.”
UQ’s non-invasive approach works by enabling the safe penetration of the brain’s highly evolved blood barrier, which is situated between the brain’s blood vessels, cells and other components that make up brain tissue.
The blood–brain barrier prevents most things from leaving the bloodstream and entering the brain. While it is beneficial in stopping foreign substances such as toxins or bacteria from entering the brain, it is an impediment to drug development for brain disorders. Not surprisingly, vast resources have been devoted to designing barrier-penetrating drugs.
In looking for a way through the barrier, QBI researchers found that not only could ultrasound temporarily open up the blood–brain barrier, but it activated immune cells that could clear toxic protein clumps and restore memory function.
This discovery is the result of world-class scientists moving to Queensland and building greater scientific capability in dementia. Researchers, engineers and clinicians are now working to advance this work to human patients as quickly as possible.
A treatment could be in clinical trial as early as three to five years from now, if funding can be found.
“We now have an effective and safe mechanism with which to beat Alzheimer’s disease, and I foresee the development at UQ of a device that is effective, cheap and mobile,” Sah said.
That can’t come soon enough for John, who is going about his daily life – visiting friends at the local café or exercising – but feeling ever more despair at his changing symptoms and vulnerability to the inevitable.
“Alzheimer’s has many faces. When I come home I’m exhausted by the overload on my brain of just having a conversation,” John said.
“I don’t really follow what people are saying even if they think I do. If they revisit the conversation it’s obvious I didn’t understand what was said. It’s humiliating.”
With the support of donors, there is hope for hundreds of thousands of Australians like John.
“The research that QBI is undertaking into dementia is phenomenal. We hold out hope that one day John might be able to make it to the trials if they receive the support they need to move forward,” Glenys said.
“Dementia touches so many families, so many lives, and what we have here is a possible cure, and that fills us with such hope, not just for us, but for the millions of families living with this disease.”
To join the community of children, partners, patients,
researchers, advocates, donors and clinicians at UQ helping to find a treatment for this disease, visit uq.edu.au/giving.