More than 400,000 Australians are currently living with neurodegenerative diseases.
These diseases can be rapid, dramatic and are almost always heartbreaking for those involved.
Dementia has recently become the second most likely cause of death for Australians – and is on track to become the leading cause of death.
Statistics like these are behind NeuRA and the Garvan Institute’s 1,000 Brains Project, a ground-breaking research venture to identify the elements in the brain that cause these life-changing neurodegenerative diseases.
Researchers know that certain factors, such as smoking or poor cardiovascular health, increase the likelihood of developing dementia.
But it remains unclear why some people develop these neurological diseases as they age, while others do not.
“This is what we hope to solve through the 1,000 Brains Project,” said Claire Shepherd, the Director of NeuRA’s Sydney Brain Bank and the leader of the 1,000 Brains study.
This study will offer hope for people like Joy Mallett, whose family has been ravaged by dementia.
The onset of dementia in Joy’s husband, Don, rapidly changed their lives. His behaviour changed, which led him to quit his job. Soon afterwards, Don was diagnosed with dementia.
Joy said it was very challenging to bear witness to Don’s declining health.
“I’d come home from work and find cigarette burns in the carpet. One day I couldn’t find the kettle in the kitchen but I could see all the welding parts had melted. Don must have gone to make a cup of tea and gone outside and forgotten about it. I eventually found it out in his shed,” said Joy.
Sadly, Don died from dementia at the relatively early age of 66. Then, their daughter, Lisa, also became ill. Lisa is now aged in her 50’s and has such advanced dementia that she cannot recognise her own children.
Joy’s sadness when describing her family is raw. Dementia is indiscriminate and a very cruel disease to everyone that it affects.
“I think Lisa knows who I am. She looks at me, but she hasn’t been able to speak for years, eight years or so. She looks at me and then she just takes off, walks off. It’s very hard,” said Joy.
It is stories like these that motivates lead 1,000 Brains scientist, Dr Claire Shepherd.
“Increasing the number of brains we have, and the range of neurodegenerative disorders that we can examine under a microscope, will give us a better understanding of the cellular changes that occur as a result of these diseases,” she said.
“This research could have a major impact on those who have a family history of these kinds of diseases and can help us to give people hope by making great advances.”
“Our vision is to better understand the cause of these diseases and what we can do to delay their onset or improve treatments to reduce their impact. It’s extremely exciting” said Dr Shepherd.