Dementia stigma affecting young sufferers

ELOISE LE GROS

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Younger onset dementia has a unique set of challenges. Photo: Wikipedia.

The stigma surrounding Dementia as an ‘old person’s’ disease could be costing younger sufferers time with late diagnoses due to age misconceptions and lack of support facilities.

Dementia Awareness Month, an initiative by Alzheimer’s Australia, seeks to create awareness of the disease, including younger onset dementia, throughout September.

According to an Alzheimer’s Australia report, younger sufferers usually wait significantly longer than the average three years until a formal diagnosis of the disease is made, due to lack of awareness among medical professionals.

Australians under sixty five are one the fastest growing age groups susceptible to dementia, with the Australian Beauru of statistics suggesting 25, 000 people are living with younger onset dementia.

Alzheimer’s Australia Manager of the New South Wales Younger Onset Dementia Key Worker’s Program, Barbara Williams, said that younger people faced a unique set of challenges, particularly before formal diagnosis.

“Many [sufferers] under 65 are employed, so this can cause problems with their employer and may result in unfair dismissals, if the disease is not diagnosed in a timely matter,”

According to Ms Williams, if the sufferer is the breadwinner this can make a big impact on the family income, something which earlier diagnosis could help.

“If they are diagnosed early enough, unions and Alzheimer’s Australia may be able to help the sufferer keep their job, working in the capacity they are capable of,” Ms Williams said.

General Practitioner Dr Genevieve Keene said younger sufferers were often initially misdiagnosed, the symptoms confused with other issues and patients themselves unaware of the possibility of dementia.

“Usually it is put down to stress and other causes and at first is overlooked as dementia,” Dr Keene said.

Dr Keene said many doctors faced challenges when diagnosing younger people with the illness, as other causes were generally checked first.

“Often young people present well and come in on their own accord, unlike older people who may have worried family members with them,”

“They generally will be presenting very mild symptoms, and it is simply not the first option doctors will go to,” Dr Keene said.

Roslyn Anne Green, who was 53 when diagnosed with younger onset dementia in 2007, said it took nine years from first noticing symptoms to getting formally diagnosed.

“I knew something wasn’t quite right,  I kept asked my doctor but he just said we all get forgetful at times and I was too young for [dementia],” said Ms Green.

Ms Green said that time was a key factor in earlier diagnosis of the disease, allowing people to put in place their life matters whilst they still had the brain cognition to do so.

She said it was possible for sufferers of dementia to still live well, however getting their GP on board for early testing was crucial to this and to be persistent in pursuing the matter.

“Yell, scream, kick, do whatever it takes to make your GP listen to your concerns and get testing. Don’t let them brush you off if you are worried,” Ms Green said.

Dr Keene agreed that lack of awareness among general practitioners and lack of support facilities for young sufferers was a factor that needed further addressing.

Throughout September, Alzheimer’s Australia is running national workshops for Dementia Awareness Month.

If you or someone you know needs support with dementia related illnesses please call Alzheimer’s Australia on 1800 100 500 visit www.qld.fightdementia.org.au.

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