National dementia survey targets impact of discrimination

Australians are being called upon to consider how discrimination impacts the estimated 447,000 people living with dementia, along with their families and carers, during Dementia Action Week 2019, which runs from 16-22 September.

As part of the annual awareness campaign, Dementia Australia CEO Maree McCabe is asking Australians to complete a short survey at dementia.org.au/survey to give us a national, informed picture of what discrimination looks like now and what it would take to shift that discrimination.

Figures show that without a medical breakthrough, the number of Australians living with dementia is projected to increase to almost 1.1 million by 2058. The increasing prevalence means there will not be anyone not impacted by dementia in some way.

“We know, because people living with dementia tell us, that discrimination exists and that it impacts on their everyday life,” Ms McCabe said.

“That’s why we want to tackle this head-on and we are calling on all Australians to contribute their views. 

“Almost 5000 people have already responded since the survey opened last month.

“If we can inspire the general public, as well as people who have been impacted by dementia, to complete the survey we believe we will have access to invaluable data that will give us a national, informed picture of what discrimination looks like now and what it would take to shift those behaviours.

“Dementia is the chronic disease of the 21st century. We have a responsibility to think differently about dementia and end the discrimination.”

Discrimination can come in many forms. For Tim Granger, who lives with dementia, the change in people’s behaviour towards him has been noticeable since his diagnosis with younger onset Alzheimer’s disease four years ago. 

“A lot of people don’t know how to approach me and there’s a misconception that I won’t remember who they are,” Mr Granger said. 

“I was recently at an event where I knew almost everyone in the church, yet everyone stayed away except one man. 

“My close friends are okay and treat me the same, but it’s the wider circle of acquaintances who aren’t sure what to do. I want them to know I am a normal human being and I want to talk to people. I just have a few obstacles now.”

Tara McDonald, whose father Jim is living with dementia, said at her father’s local community group, he was encouraged to use the equipment to his ability and chat to other attendees.

“He tended to enjoy sweeping up and keeping things tidy, so he felt useful, until a member of the group asked him why he bothers coming because he doesn’t do anything,” Ms McDonald said. 

“That really took the wind out of his sails.”

This year’s Dementia Action Week theme is Dementia doesn’t discriminate. Do you? The aim is to challenge Australians to think about how their words and actions impact on the everyday life of a person living with dementia.

Do you know people living with dementia? Has your behaviour towards people with dementia changed since you found out about their diagnosis?

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