Three in four Australians living with dementia say people don’t keep in touch like they used to, a new survey has found, with those from non-English speaking backgrounds facing “extra” challenges around access to information and services.
Almost two in three say people they know have been avoiding or excluding them, according to the survey released on Monday by Dementia Australia.
Close to half a million Australians live with dementia – a collection of symptoms caused by disorders affecting the brain – and that number is expected to double in the next 25 years.
Ann Pietsch is one of them. She said the stereotype that “we’re all elderly people and we’re all losing our memories” is unhelpful, and that people living with dementia should be seen as “regular, everyday people”.
“There are so many different people with dementia and there are so many types of dementias with all sorts of symptoms,” Ms Pietsch said.
“It’s not just forgetting things – it’s more than that. It might be being unable to get organised or organise your day or your thoughts, or having a fuzzy day, as I call it.”
The survey also found four in five family members, friends and carers felt that people in shops, cafes and restaurants treated people with dementia differently.
About 90 per cent said their friend or relative living with dementia was treated with less respect than other people.
Dementia Australia CEO Maree McCabe told SBS News people from culturally and linguistically diverse (CALD) backgrounds face “extra challenges” – starting with how dementia is understood.
She said the number of Australians living with dementia who do not speak English at home is estimated to be about one in eight, and as high as one in six in states such as Victoria that have a larger migrant population.
“Some languages don’t have a word for dementia, so it’s even more important that we provide information that allows everyone to understand what this disease is,” Ms McCabe said.
People from CALD communities face extra challenges
Ms McCabe said people from CALD communities can also face difficulties understanding the support services that are available to them.
“People from CALD backgrounds need to know there are services are out there that are linguistically and culturally sensitive. But lack of access to these services can prove to be challenging,” she said.
She said a person will often revert to their language of origin as their dementia progresses, which can leave them misunderstood.
“Some of these languages or dialects are not spoken anymore. To have that experience of not being understood … I can’t imagine how difficult that would be.”
Ms McCabe urged people from CALD backgrounds to make use of Dementia Australia’s factsheets, which are available online in 43 languages.
“There is information out there, and we have interpreter services that are well-utilised in counselling services. We urge people to call our national helpline so that we can connect them to our own services or others to best meet their needs,” she said.
For others living with dementia, Ms McCabe said it would not take much to turn the 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.”
For Theresa Flavin, that meant taking up horse riding after her diagnosis.
“I found an awesome coach who I really trust, and she gave me confidence. She was so patient. She broke the whole thing into little pieces of information that my brain could process,” Ms Flavin said.
“She gave me that confidence and I felt like a hero.”
Ms Pietsch said living well with dementia comes down to staying positive and meeting people.
“I volunteer at the museum and I really enjoy meeting people and talking to people. It’s very rewarding,” she said.
Fact sheets are available on the Dementia Australia website in 43 languages.
If you suspect someone close to you may be showing signs of dementia, Dementia Australia encourages you to call the National Dementia Helpline for advice on how you can help: 1800 100 500
With additional reporting by AAP.