Wendy is no layman when it comes to supporting family members with frontotemporal dementia (FTD). Wendy’s older sister, Linda, was diagnosed with FTD in 2008 and Wendy and Jeff supported her in care until her death in 2014. During this time, Wendy’s brother, Sean, was also having difficulties and went to see a neurologist. It was later determined that Sean also developed FTD.
Two close relatives who had been diagnosed with FTD were suspected to have their conditions due to an underlying genetic cause — suggesting whether Wendy was also at risk for developing FTD. Subsequent genetic testing at the Frontier Research Group and Gosford Hospital confirmed that Wendy had the same genetic defect as her siblings. The ramifications of these findings meant that Wendy would eventually develop FTD.
The news shocked Wendy and her partner Jeff, who said he denied whether the genetic findings would mean Wendy would go on to develop FTD, but then Wendy’s symptoms started showing up.
“I was probably the one more in denial, and eventually I had to accept that. And little by little, over the years, I’ve noticed functional changes in how Wendy behaves and what she can and cannot do. people wouldn’t even know by talking to her that there are areas of life where there is a disability,” explains Jeff.
Today, Wendy experiences problems with daily tasks and decision-making; however, she does her best to live well with dementia and reduce societal stigma by adopting an optimistic view:
“I’ve seen signs on the backs of cars that say: adventure for dementia” shares Wendy “and mine is, adventure with dementia.“
Because Wendy’s condition is genetic, her daughters recently received a letter from Wendy explaining that if a family member has been diagnosed with this disease, there is a 50 percent chance of inheriting the disease.
“That meant that both my daughters made a conscious choice to have some genetic research done. My oldest daughter did it purely for information.”
Fortunately, both of Wendy’s daughters do not have the genetic defect.
Wendy continues to participate in FTD research with the FRONTIER Research Group as she seeks to help others with diagnosis while living her motto: adventure with dementia.