Action fuels hope for dementia cure

6 November 2018

The Greek philosopher Seneca once wrote that grief is a process that robs us of our words.

When former speech pathologist Janice Rushworth lost her husband Alastair, her world and her words stopped.

The two had moved from the United Kingdom to Brisbane seven years earlier so she could pursue an opportunity with the Department of Communities, Child Safety and Disability Services to help those living with a disability.

Soon after their move, Alastair was diagnosed with early-onset dementia.

Though they made the most of the time they had left together, Janice still found herself overwhelmed and unprepared when Alastair passed away in 2016.

“You are the watcher by the bed ­– there is no cure, there is nothing you can do but watch your loved one slip away,” Rushworth said.

Friends and colleagues recognised that in this moment, they too lacked the words to comfort Rushworth in her grief, so instead of sending flowers or sympathy cards they sent donations.

Together they raised more than $4000 to support research for a cure, and gave Rushworth a way to channel her grief and her love for Alastair.

“While there is no cure, the diagnosis of dementia remains a death sentence,” she said.

“We can change this and improve the quality of life for those living with dementia through research.”

Rushworth has partnered with  The University of Queensland (UQ) Queensland Brain Institute (QBI) to work towards a cure. 

With support from her family, friends, and community members, she has so far helped raised more than $18,000 to support a PhD researcher working on promising potential cures for dementia

The scholarship has been named the Alastair Rushworth PhD Scholarship, in Alastair’s honour. 

“The work the QBI does is so important, it will help improve the quality of life for those living with dementia and create a future where this disease is no longer a death sentence,” Rushworth said.

To continue to support the scholarship, Rushworth’s most recent fundraising work is pushing her outside of her comfort zone to take part in the Three Capes Track in Tasmania.

The trek will take place in early October, and Rushworth is aiming to raise the amount $52,000 to support two annual PhD scholarships. 

Members of the community are encouraged to donate.

She will be joined on this trek by John Quinn, a man living with younger-onset dementia who is helping UQ work towards a cure through his public advocacy.

“John never knew Alastair and yet he and his wife Glenys have been a tremendous source of kindness and support for me,” Rushworth said.  

“We are working towards a cure for people like John and the countless loved ones of many people in Australia and around the world who are living with this disease.”

Rushworth is also working to change how people view and treat those living with dementia. 

“Dementia is a neurological disease with a lot of stigma attached due to the way the symptoms present,” she said.

“People will generally have more understanding for conditions that don’t have cognitive decline – where language and communication is not impacted – because they can recognise the physical symptoms and the person can still communicate effectively.”

Understanding the condition can lead to better outcomes and treatment for those living with it.

“Alastair was always himself, he didn’t change, but what he lost was his ability to communicate in a sophisticated manner.

“Often people will start to treat the individual quite differently, even patronisingly, when the individual has not really changed, they are just being affected by a disease that impacts their ability to effectively express themselves.”