Step Up for Dementia Research

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Meet Dennis Frost

Wednesday, January 30th, 2019

Dennis Frost is a member of the StepUp for Dementia Research Public Involvement Panel.

Dennis Frost recalls feeling happy when he received his diagnosis of frontotemporal dementia six years ago, aged 59 years. “I finally had an explanation for things that were occurring” he says.   He adds that his son’s reaction was one of concern; to him his father had just been given a terminal illness.  Dennis says “the path of dementia is not what society sometimes has us believe”, and his son’s somewhat understandable expectation “that I would wind up incapable of anything very quickly”, changed with time.

Dementia provided an opportunity to achieve a lifelong ambition

Dennis shares that having dementia “can be quite liberating … knowing you have a finite time left as it were, makes things a little clearer.” For Dennis, his diagnosis meant an early retirement from his teaching role at colleges and managing his own IT support business.  “I was moving that way anyway. I always had an ambition to build a model railway, and this now gave me the time and resources to do it”, he explains.

An accidental research participant

Dennis describes stumbling across research somewhat inadvertently.  In his quest to understand the symptoms he was experiencing, he says he was referred to the FRONTIER research unit at NeuRA, and “that after 18 months of investigations, they were able to diagnose me with frontotemporal dementia in one day”.

Richness in Contribution

Dennis likes to be involved in as much research as possible, but says “the hardest thing about research is locating it…often you have to rely on word of mouth to get connected”.  Dennis speaks enthusiastically about StepUp for Dementia Research as a solution to this issue; as well as being a resource for participants to read summaries of the research outcomes in a language that they understand.  Dennis says that “research is not as pharmaceutical as you might think, it has a social aspect”. He sees it as “a chance to contribute for our future generations, and a chance to enjoy yourself at the same time.  You won’t get rich doing it”, he says,” but it won’t hurt you either”.

 
The University of Sydney

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