Sep 21, 2020

Avoidance and exclusion: how people living with dementia are experiencing discrimination

Dementia Australia have released the results of a survey which found that people living with dementia are facing discrimination and exclusion within their communities. It’s a sad finding and one that we should all make a conscious effort to amend, especially during this year’s Dementia Action Week, which has the theme ‘A little support makes a lot of difference’.

75% of people surveyed who live with dementia said that people don’t keep in touch as regularly as they did before their dementia diagnosis. 65% said people they know avoid or exclude them. 

The discrimination extends to the family, friends and carers of people living with dementia as well, as 71% said they hadn’t been included in family activities, and 80% of family members, friends or carers said that people have gone out of their way to avoid their friend or relative who lives with dementia when they are out and about. 

Even people who may be unaware of a person’s dementia diagnosis can display prejudice against them. 81% of family members, friends and carers who responded to the survey felt that people in shops, cafes and restaurants treat people with dementia differently, and 90% say that their friend or relative who lives with dementia is treated with less respect than other people.

The statistics are frustrating to people living with dementia and their loved ones alike, as it becomes increasingly clear that the disease does not need to keep people from living fulfilling lives. Dementia Australia CEO Maree McCabe comments that ‘a little bit of support can make a really big difference to someone with dementia.’

‘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,’ Ms McCabe says. 

People living with dementia want to be viewed as regular people, free from discrimination from people close to them and the wider public.

Theresa Flavin, who lives with dementia, shared her story as part of this year’s Dementia Action Week campaign. Following her diagnosis, she took up horse riding.

‘I found an awesome coach who I really trusted, and she gave me confidence. She was so patient. She broke the whole thing into little pieces of information that my brain could process,’ Mrs Flavin says. ‘She gave me that confidence and I felt like a hero – I am just the bee’s knees sitting here on my horse.’

Ann Pietsch comments that not everyone living with dementia fits into society’s stereotype.

‘There are so many different people with dementia and there are so many types of dementias with all sorts of symptoms,’ Mrs Pietsch says. ‘One of the most helpful ways of managing my dementia is to remain positive and to live well with dementia. I volunteer at the museum and I really enjoy meeting people and talking to people. It’s very rewarding.’

Tim Granger, also featured in the awareness campaign, uses exercise as a way of keeping both his mind and his body healthy and active. His weekly routine includes going to the gym. ‘Exercise gives me pleasure,’ Mr Granger says. ‘It helps me do what I have to do and get things going. I couldn’t live without it, really.’

Mr Granger’s support worker accompanies him to the gym and takes photos of his exercises to provide visual prompts, demonstrating that this small act of support can greatly assist people living with dementia, without implying that they can’t manage something on their own.

Ms McCabe agrees that allowing for this level of independence is vital. ‘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,’ she says.

The stories of Mrs Flavin, Mrs Pietsch and Mr Granger highlight the possibilities that are still available for people living with dementia. This Dementia Action Week, let’s fight discrimination against people living with dementia and celebrate their achievements and opportunities.


For more stories on living with dementia, visit the HelloCare dementia page.

To see daily tips from Dementia Australia as part of Dementia Action Week 2020, follow HelloCare on Facebook.

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