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Why we’re tongue-tied around dementia


Despite increased awareness about dementia, one in four people feel uncomfortable around someone living with the condition because they don’t know what to say or are worried about saying the wrong thing.

Maree McCabe

The findings are revealed in a new research report by Dementia Australia, which also found that while there’s an expectation of community support and empathy towards people with dementia, the belief is that “other people” and “other services” should provide this.

The perception contrasts with the experiences of people with dementia and their families, who reported difficulty accessing and securing service appropriate to their needs.

The report, Inclusion and Isolation: The contrasting community attitudes to dementia, builds on an 2017 survey that found 94 per cent of people with dementia have encountered embarrassing situations  and 10 per cent of the public were unsure how to deal with people with dementia.

Dementia Australia CEO Maree McCabe says it’s heartening to see that 80 per cent of the 1,500 people surveyed had heard of dementia and three quarters knew basic facts about the brain disease that currently affects almost half a million Australians.

“But it is concerning that four out of five people surveyed believe that others feel uncomfortable around people with dementia and two in three believe that individuals have a negative perception of people with dementia,” she said.

“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.”

According to Dementia Australia’s latest figures more than 436,000 Australians are living with dementia and there are 250 new cases each day.

About 590,000 people are predicted to be living with dementia by 2028 with the number expected to blow out to 1.1 million by 2058.

Community attitudes towards dementia:

  • 80 per cent of people have heard of dementia
  • 57 per cent had heard about it had been affected through family member or friend’s experience with it
  • Two thirds knew memory loss was a symptom
  • Only six per cent described it as progressive or degenerative
  • Only one in three know that Alzheimer’s disease is one of over a hundred types of dementia

Reasons for lack of confidence

  • I don’t know what to say to them (63 per cent)
  • I’m worried I’ll say the wrong thing (53 per cent)
  • I’m worried they won’t understand me (54 per cent)
  • I’m afraid I might hurt their feelings (45 per cent)

(Source: Inclusion and Isolation: The contrasting community attitudes towards dementia).

Emphasis on meaningful communication

“This suggests that, while community awareness of dementia is increasing, we need an increased focus on building knowledge of the epidemiology of dementia as well as the symptoms of the disease,” the report, released on Wednesday during Dementia Awareness month, concludes.

“Fear of poor communication was one of the strongest findings in the survey and reveals that, in order to combat the social isolation that so many people living with dementia feel, a stronger emphasis in public awareness campaigns on meaningful communication is needed.”

Ms McCabe says just knowing about the disease isn’t enough.

“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.

Some 70 per cent of people with dementia live in the community and about half of 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.”

Resources:

Tips for friends

How to communicate

Dementia-friendly communities

You can read about how dementia campaigns are failing to hit the mark here

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