Men struggling with masculinity after dementia diagnosis

An Australian dementia advocate is researching the effect a dementia diagnosis has on men and their sense of masculinity, after his own personal experience.

John Quinn, a former Brisbane school principal, will present his research findings at the 2018 International Dementia Conference in Sydney, hosted by leading aged care provider, HammondCare over June 7-8.

After a 35-year career working as an educator and school administrator, John was diagnosed with younger onset dementia in 2010 at the age of 59.

John said the diagnosis altered his sense of identity.

“Being in a position of authority and then having no job had a big impact on me,” John said.

“I was brought up in a generation where men were the breadwinners and most females did not get educated past year 10, so men were expected to be educated and provide.

“After my diagnosis, I felt that I couldn’t provide for my family and I felt ashamed.

“For my generation, men believed they were bulletproof and as far as going to the doctor was concerned, you avoided it, because it represented weakness.”

John was inspired to conduct the research after hearing a speaker in Budapest two years ago. He is calling for an end to the stigma attached to dementia.

“What stigma does is disable you as a person – I am a good example I never shared my diagnosis, because you are in denial,” he said.

As part of his research, John spoke with people who shared his own diagnosis – younger onset dementia, which occurs in people under 65.

“When I spoke to younger women diagnosed with younger onset dementia in their late thirties and early forties, they had similar views as males of my generation,” he said.

“We need to tackle the stereotype out there, of what a person with dementia looks like.

“The strong voices in dementia are the people diagnosed young because they can get across the issue that impacts them.

“Even though dementia is not a lifestyle choice, we can choose our lifestyle, and we can choose to live well with dementia.”

Director of the Dementia Centre, Associate Professor Colm Cunningham said it was extremely important to hear directly from people living with dementia.

“I am extremely thankful for people like John for sharing his experience and work to extend the discussion and understanding of dementia, to apply to both policy and practice,” Professor Cunningham said.

“John’s work is so important as the narrative of stories and direct experiences of those living with dementia enrich our understanding and inform our role in supporting people with dementia and their carers.

Approximately 425,000 Australians live with dementia, and this figure is expected to increase to one million by 2050.

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