Three people with dementia reveal the discrimination that no one talks about

Discrimination is a real issue for people living with dementia. Well, that’s the case for 67-year-old Ann Pietsch, who’s copped her fair share of discrimination since being diagnosed with the condition about eight years ago.

Ann was around 59 years old when she was diagnosed with early-onset dementia after she noticed she was having trouble completing simple tasks at work, she tells Starts at 60 as part of Dementia Action Week 2020, which runs from September 21-27.

“I mean numbers were second nature for me, but it got to the stage where I started to think ‘I [don’t] know where I got that’, ‘how [could] I figure out that budget yesterday [but] I can’t do it today’,” Ann, who was working in admin at the time, explains. “Or I started to forget the names of some of the people who were working with me.”

Since then it’s developed into Lewy body dementia, a type of progressive dementia that leads to a decline in thinking, reasoning and independent function. Ann says she has symptoms similar to Parkinson’s disease, like hallucination-type dreams, the shakes, poor balance and loss of taste. She also experiences fuzzy thinking from time to time.

‘I think it’s really ignorant’

Ann says when it comes to dementia discrimination, it tends to be the little things that society often overlooks like confusing signage on doors, bathrooms, or even in car parks, adding, “I think it’s really ignorant more than anything.”

Not to mention, some people often think those living with dementia can’t live normal lives or even communicate with others, which Ann says is completely wrong.

“People will say to you, ‘Oh, you don’t look like you’ve got dementia’, so you’re dismissed [from] having a legitimate diagnosis,” she says. “There are some people whose dementia progress is very rapid, but then there are others, I think they say 70 per cent of people with dementia live in the community.”

And Ann can vouch for that, saying since her dementia diagnosis, she’s been busier than ever. She’s an advocate for Dementia Australia, involved in a number of research groups, and volunteers at a museum in Adelaide, South Australia, where she lives with her husband Timothy.

Dementia discrimination is more common than you think

Ann isn’t the only person with dementia that’s come face to face with discrimination. Theresa Flavin, 54, who lives with dementia and shared her story as part of this year’s Dementia Action Week campaign, revealed after her diagnosis she didn’t give in to the stereotypes associated with dementia and took up horse riding instead.

“I found an awesome coach who I really trusted, and she gave me confidence,” Theresa said. “She was so patient. She broke the whole thing into little pieces of information that my brain could process.

“She gave me that confidence and I felt like a hero — I am just the bee’s knees sitting here on my horse.”

Meanwhile, Tim Granger, 56, who also lives with some form of dementia, shared his secret to getting on with life, revealing he can’t live without exercise.

“Exercise gives me pleasure,” Granger said. “It helps me do what I have to do and get things going. I couldn’t live without it, really.”

Meanwhile, a Dementia Australia survey of nearly 6,000 people with dementia and their carers also found 71 per cent haven’t been included in family activities, 81 per cent felt people in shops, cafes treat people with dementia differently, while 90 per cent feel people with dementia are treated with less respect. Dementia affects close to half a million Australians and that number is set to double in the next 25 years.

The right support makes a big difference

Dementia Australia CEO Maree McCabe said the survey findings are distressing for people living with dementia, however, it would not take much to turn those findings around.

“What these findings say is that discrimination stems from a lack of understanding and knowledge of dementia – what it is and how it impacts people,” she said. “A little bit of support can make a really big difference to someone with dementia.”

Maree said it could be as simple as giving someone space to do things for themselves, listening to the person, not trying to solve all their problems, giving the person time to find the right words, or using technology to support someone in their day-to-day activities.

“Tim, Ann and Theresa’s experiences all demonstrate that it really doesn’t take much,” she said.

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