‘I am more than dementia’

John Quinn dispels some myths

At the National Dementia Conference this week, John Quinn delivered an honest and inspiring account of how he lives a full and satisfying life with dementia.

by HelloCare editor, Caroline Egan – May 16, 2018

John Quinn was a principal and vice principal of large primary schools throughout his 35-year career and was dedicated to educating students and colleagues. Diagnosed with dementia in 2010, John is now spending much of his time educating others, teaching people what it’s like to live with dementia and dispelling misconceptions and stereotypes about the condition.

His mother had dementia, and as a young man, memories of her in a shopping centre in her nightie were “a heavy burden”.

Two of Mr Quinn’s aunts and one uncle also had dementia. All were diagnosed in their late 50s and early 60s.

John’s own experience in being diagnosed with dementia was difficult.

“A diagnosis of dementia doesn’t automatically mean end of life. I know that now. However, I was given no hope for many years,” he said.

John’s partner first noticed changes in his behaviour when he was 50.

A few years later, he sought medical advice because the symptoms he was experiencing were impacting on his life.

Initially diagnosed with stress because of his job, Mr Quinn continued to work until he was 57 – until he was forced to resign.
His 35-year old career, which he loved and for which he was well respected, was over.

John said he “couldn’t organise my day, learn new things, problem solve, or make decisions.”

Over the next two “tumultuous” years, John was diagnosed at various times with ADHD, stress, OCD, aspergers syndrome, serious depression, and psychosis. He was prescribed various medications, including antipsychotic medication.

“The psychological implications of suddenly being forced to leave work with no diagnosis resulted in lack of self-esteem, poor confidence, and no purpose in life,” he said.

Understandably, John become quite depressed, so when an accurate diagnosis of dementia was received at the age of 59 years, it was a relief, he said.

“I could now put a name to what was happening with my thinking, my behaviour, and the ongoing issues associated with daily living.”

However, relief turned quickly to “despair, hopelessness and a deep sense of being alone”. Mr Quinn remembered his previous experience of dementia with his mother, he had a sense of failure because he was no longer able to be the breadwinner, and felt  a sense of shame because of the stigma surrounding dementia.

The responses of some of Mr Quinn’s friends was also upsetting. Some told him he was “rorting the system” and said there was nothing wrong with him.

After the diagnosis, Mr Quinn said he felt he was “nothing more than dementia”.

A turning point came when Mr Quinn attended a Dementia Australia fundraising event. Ita Buttrose was the president, said Mr Quinn, and she spent a lot of time talking to him about what he was interested in, and who he was.

“The positive and encouraging language from her and others that night had a profound effect on my attitude to my diagnosis,” he said.

“That night I felt valued. I got back my self-esteem.”

After the talk, Mr Quinn realised: “I can do this. I can live well with dementia.”

Mr Quinn’s partner, Glenn, says “that’s when she got John back”.

Mr Quinn began thinking about who he was? What was he passionate about?

Relationships with his family came first, especially those with his partner, his four children, and his nine granddaughters, but he also had many other interests.

“Despite my current challenges, I love to learn,” he said.

He started learning Spanish, and sports, which had always been part of his life, remained so. In fact, after his diagnosis he walked the 825km Camino de Santiago, carrying all his luggage in his backpack.

He has done two walks through New Zealand, walked the Larapinta trail in Central Australia, run the Great Wall of China half marathon, and climbed Mount Taranaki in New Zealand.

Four years ago he took up cycling to give him greater independence since he could no longer drive.

“Glenn suggested I buy a bike, and she ensured other mechanisms were in place so that I could be confident that I could still be independent and get around,” he said.

Importantly, being able to cycle meant he could go to his friends’ places for coffee.

He was able to participate in two extreme awareness challenges to raise funds for dementia – cycling 562km through Vietnam and Cambodia over nine days, and then the Camino de Santiago again – this time cycling with a group.

“I didn’t exactly sit around waiting for my memory and my life to fade away,” he said.

Mr Quinn has also developed a strong interest in researching and learning about dementia, in particular research about positive lifestyles.

His work with Dementia Australia has taught him the importance of lifestyle considerations. As for what are the best lifestyle factors for him, “I’m still learning what I personally need,” said Mr Quinn, “because dementia doesn’t stand still.”

As well as exercise, Mr Quinn includes the “risk reduction factors” of “psycho-social interventions”, which for him includes Pilates, doing crosswords, volunteering, cycling, and learning Spanish. All are “activities that keep my brain active”, he said.

“I engage in them to enhance my wellbeing and quality of life.”

Rehabilitation After Diagnosis

“Why is there immediate rehabilitation for people who may have had a stroke, a heart attack, or a serious car accident, but no referrals for support immediately upon diagnosis of dementia?” asked Mr Quinn.

“One of the most powerful ways to maintain independence and quality of life for people with dementia is to adopt principles of wellness, reablement, and restorative approaches to care,” he said.

Funding for those approaches is only offered to people living with dementia with decreased functionality, he said.

“We’ve had to do all the research ourselves, and personally fund all our activities. What are we missing? We wouldn’t know,” he said.

Mr Quinn said Queensland Health’s Dementia Enabler [link] guide is a new useful guide for referrals to other services after a dementia diagnosis.

Challenging The Dementia Narrative

Many people living with dementia are continually challenging the dementia narrative, and that change must continue, said Mr Quinn.

Mr Quinn is on three committees, and six research research committees, working on projects to empower people who are living with dementia to live more independently.

“I’m in my element,” he said, “because for me, this is meaningful and stimulates my interest therefore is helping to maintain my own functionality.”

People living with dementia have a important role to play in contributing to such projects, he said.

“I’ve recently started working alongside city planners, economic development teams, and service providers looking at design principles to ensure that our communities become inclusive for all,” he said.

“Let’s start working together to ensure that built environment and design features begin to be addressed now. Please include us, and ask us what we need.”

“Don’t offer to walk me around the block. I’d like someone to swim in the lane beside me for at least a kilometre,” he said.

John said that he wants people to think of him as a person.

“I am more than dementia.

“I am still John.”

Using the Correct Language to talk about Dementia

“I am not a dementia sufferer,” said Mr Quinn.

“I am not a dementia victim.

“I am not a dementia patient.

Mr Quin emphasises the importance of not using these labels when talking about people who are living with dementia.

Mr Quinn said nearly every media announcement about dementia includes such words, and that influences the language used in the community.

Read the dementia language guidelines at fightdementia.org.au 

In Australia, dementia is currently the leading cause of death for women and the second leading cause of death overall.

“Dementia is everyone’s business,” he said.

Mr Quinn encouraged the audience to share his talk with friends and family – “whoever will listen.”

“Education and awareness will help people living with dementia, their carers and their families.

“Now that i have dementia, I can choose my lifestyle, and I choose to live well with dementia.

“Muchas gracias,” he concluded.

Are you a dementia friend? dementiafriendly.org.au