PROFILE: IMELDA GILMORE
Young Onset Dementia A carer’s journey
With her lived experience as the carer of a person with young onset dementia, Imelda Gilmore is committed to making a difference in research. By Linda Music
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ccasionally one has the privilege of meeting a remarkable human being: someone whose dedication to advocating for those who do not have a voice reminds us there are good people in the world. Imelda Gilmore is one such person. Imelda sits on the Age and Ageing Clinical Academic Group’s Consumer Council and brings with her a depth of understanding and lived experience as a carer for her husband who died from young onset dementia in 2016. He was just 65.
A carer’s journey Imelda’s consumer advocacy journey began as a carer. At the age of 58 her husband, Graham, started to experience forgetfulness. Putting it down to work fatigue, Imelda was sure that once he retired things would improve. “Back then, it would never have occurred to me that a man his age could have dementia,” she explains.
At the time, knowledge about young onset Alzheimer’s was extremely limited. “When I was completing my first semester of a Bachelor of Dementia Care Course with University of Tasmania in 2017, a year after my husband’s death, I conducted some research for my final essay. As I went through the literature, the earliest paper I could find on young onset dementia was published in 2013. Prior to that date there was no research I could find about people under the age of 65 with dementia.” Doctors didn’t seem to have much information either. “We went to see a neurologist when Graham was 63, as his symptoms had deteriorated significantly, with increasing incidences of memory loss and confusion. “The neurologist referred him for a driving test which he not only passed but allowed him to drive for an additional six months. This was even
Imelda Gilmore
though he was having memory lapses when driving; for example, there were incidences when he suddenly didn’t recognise where he was, even when we were only a few streets away from our home. “As Graham refused to have an MRI, the neurologist sent him away In-SPHERE
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