Greg Kelly was diagnosed with younger onset dementia at the age of 59, but he is challenging the stigma of the disease by riding a Harley Davidson the length and breadth of New Zealand, Australia and the United States.
He began the Kiwi leg of his journey at John Andrew Ford in Auckland yesterday, and will be continuing the ride for the next five weeks.
“I want to put a spotlight on this disease and raise awareness of younger onset dementia because this is not a disease just for the very old,” he said yesterday.
There were people as young as 29 with the disease, and it was the second highest killer in Australia and the third highest in New Zealand and the United States.
Throughout the New Zealand trip he will be visiting local Domentia New Zealand organisations, and raising money for them as well as awareness of the disease.
A highlight of the itinerary will be a group ride from Mt Wellington Harley Davidson to Taupo on Saturday, with members of the Harley Owners Group.
Greg’s journey is also the subject of a documentary, ‘Kell's Ride For a Cure’, made by Elizabeth McLeish of Mcleish Film and Media. It was recently chosen as one of two winners at the Sydney Lift Off Festival and was screened at the London Lift Off Festival as a result.
Elizabeth is also creating a feature-length documentary which will cover his NZ and US journeys.
Although dementia is often thought of as an older person’s disease, approximately 5% of people with dementia are under the age of 65 when their symptoms begin to emerge.
“I was diagnosed with younger onset dementia in January 2016 at the age of 59. They told me I have had it for a number of years but was misdiagnosed with having depression back as far as 2009, as happens so many times with this disease," he said.
Since dementia was much less common in younger people, there were often challenges in getting a diagnosis, with GPs more likely to pin symptoms to conditions like depression or anxiety, as was the case with Greg.
He said he hoped his ride would help change that – to ensure that more people were aware of how younger onset dementia could affect people, and to help people get a diagnosis (and the support that brought with it) sooner.