Younger Onset Dementia
Imelda Gilmore, 67, sits in a chair in the sun, her legs outstretched in red and green slippers with light-up Christmas trees on them. Her greyish eyes are flecked with hazel and she looks out over the bush and mountains. The magpies sing in the background. She nurses a cup of cooling black tea in her hands as she tells the story of her husband Graham.
Ten years ago they lived in Haberfield Sydney, where Graham worked in a stressful job. He made comments such as: “oh I forgot to do this today” or “oh, I did this incorrectly”. Imelda didn't give it much thought, thinking the stress of Graham’s job was making him forgetful. But three years later Imelda realised that something was wrong.
“When he was 61, I definitely knew something was going on. But you don't say to your husband: ‘I think you have something wrong with your head, go see a doctor’”. So Imelda carefully engineered a doctor’s appointment for Graham. Three years later and after many visits to neurologists and doctors they finally had a diagnosis - Graham had Younger Onset Dementia (YOD).
Imelda explained her frustration with the lack of knowledge about YOD, which meant they had to wait nearly four years for a diagnosis. She said: “the profile [neuropsychological profile of dementia] has been growing exponentially, but back then no one was talking about Younger Onset Dementia. … Younger Onset Dementia isn’t a gradual thing. Someone can decline very rapidly and then plateau.”
Graham now lives in residential care, a 40-minute drive away from Imelda. She said: “His chew-swallow reflex does not work and he is on pureed foods. His language is gone and he has lost a lot of his body weight because his brain doesn’t know how to turn the food into nutrients.”
Graham is one of more than 25,000 Australians with YOD. According to Alzheimer’s’ Australia, the peak body for dementia services and support, YOD refers to any form of dementia diagnosed in people under 65 years of age.
With more research being undertaken into YOD, diagnoses are being made more quickly. Professor John Hodges, Senior Principal Research Fellow at NeuRA, said: “there should be about 400 cases across a population of four million in Greater Sydney of Younger Onset Dementia being diagnosed each year”.
Alzheimer’s Australia offers programs and information for those with YOD. But while awareness of YOD has grown, the lack of services for people with dementia and their carers makes them feel marginalised.
Kevyn Morris, 54, has Mild Cognitive Impairment (MCI) and is classified as having YOD. He and his wife, Lee-Anne, approached Alzheimer’s Australia a few months ago seeking information and assistance. After an initial visit from an Alzheimer’s Australia representative, they have heard nothing. Kevyn said: “in regards to services, there is nothing - nada, zilch”. The couple have since set up their own Facebook page to support others with MCI.
In a press release earlier this year Alzheimer’s Australia stated that young people with dementia: “are missing out on key services and support as they continue to be caught up in the gaps between the disability and aged care sectors”. The press release also said that the disability and aged care sectors see others as being better placed to respond. The National Disability Insurance Agency was contacted but did not provide a response.
According to Alzheimer’s Australia NSW CEO, The Hon. John Watkins AM, stated in a press release: “currently, only people who are over the age of 65 can easily access services offered through the aged care sector, and people with younger onset dementia have felt excluded from this sector”.
Alzheimer’s Australia wants greater awareness of YOD, particularly in the health care system. Professor Hodges believes it’s only a matter of time: “There is certainly more awareness and that will trickle into the system.”
Swallowing the last of her now cold tea, Imelda said: “I have learnt everything by walking the journey.” Soon Imelda will begin a new journey as she undertakes a Bachelor of Dementia Care, enabling her to care for the love of life and share her experiences and knowledge with those around her.
If you or someone you know needs information, support or referral services, contact the National Dementia Helpline on 1800 100 500 from anywhere in Australia.
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