Australians don’t know how to talk to people with dementia

Knowledge of dementia – which is the second leading cause of death in Australia – is on the rise, however people say they don’t know how to support or communicate with someone living with the disease, a new survey has found.

This comes as updated figures, also released today, reveal there are more than 436,000 Australians now living with dementia - estimated to be more than 250 new cases every day. This number is projected to increase to 590,000 in just 10 years and almost 1.1 million by 2058.

The survey, Inclusion and Isolation: The contrasting community attitudes to dementia, and updated figures have been released in the lead-up to World Alzheimer’s Day tomorrow.

Scientia Professor Henry Brodaty AO, Dementia Australia Honorary Medical Advisor, said with the prevalence of dementia increasing it was vital all Australians understood how they could make a difference to people living with dementia.

“The figures show that all Australians will be impacted by dementia in some way through caring for someone, knowing a friend or family member, or receiving a diagnosis themselves,” Prof. Brodaty said.

Dementia Australia CEO Maree McCabe said one of the biggest issues people faced following a diagnosis of dementia was social isolation, as friends, family and their community struggled to understand how to best support and continue to include people living with the disease.

“Dementia can be one of the most profoundly isolating conditions, despite it impacting so many people,” Ms McCabe said.

“What has been heartening to see, though, is that 80 per cent of people surveyed had heard of dementia and, of those people, a further three in four people were able to correctly identify basic facts about dementia.

“Despite this knowledge, it is concerning that four out of five people surveyed believed others feel uncomfortable around people with dementia and two in three believed individuals had a negative perception of people with dementia.

“When we explored this further in the survey, it really came down to people saying they just weren’t sure how to talk to someone with dementia.

“More than 60 per cent of people said they didn’t know what to say to someone with dementia, while more than 50 per cent said they were worried they wouldn’t be understood, they would say the wrong thing, or they might hurt the feelings of a person living with dementia.”

Phil Hazell, who was diagnosed with younger onset dementia in 2015, said he was lucky to have an understanding employer and a loving family who supported him when he was diagnosed.

“When I sat down to tell my mates I did sense them having difficulty with the conservation,” Mr Hazell said.

“We all had some awkward moments: disbelief; not knowing how to react. I'm not saying the situation was easy but me being open about my predicament helped them to understand dementia and how they could support me.”

The survey also found that there was a perception many services existed to support people living with dementia and that the community – in a general sense – cared about people with dementia.

“However, this finding is not reflected in the experience of what people living with dementia, families and carers are telling us. Just knowing about the disease is not enough,” Ms McCabe said.

“The way we respond, communicate and interact with a person with dementia has an enormous impact on their day-to-day life and we can all do more to make sure people living with this disease remain included and accepted in their own community. An estimated 70 per cent of people with dementia live in the community, in their own homes, while more than half of those living in residential aged care have dementia.

“That’s why awareness, not just of the condition, but of its impacts, is essential. This is a real wake-up call as dementia impacts such a vast proportion of our community.”

More than 1,500 people across Australia took part in the survey.

The full report of the survey is available here.

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