clinical focus
Dementia out of mind
Public awareness of dementia
disappointingly low.
Maree McCabe interviewed
by Dallas Bastian
A
new survey of the general public has revealed shockingly
low awareness and understanding of dementia, says the
peak body representing people with the condition.
The survey of more than 1000 people found over 80 per cent of
Australians don’t know that dementia is the second leading cause
of death in the country, and more than half don’t understand the
relationship between Alzheimer’s disease and dementia.
The research was commissioned by Alzheimer’s Australia, which
is now known as Dementia Australia. Its chair, Graeme Samuel,
called the lack of understanding extremely disappointing.
“Dementia is a national health priority area; it is the second
leading cause of death of Australians – and the leading cause of
death among Australian women – and prevalence is increasing at
a rapid rate. Yet so few people understand just what dementia is
and how it impacts people with a diagnosis,” he said.
Samuel was also concerned about findings that showed more
than two-thirds of survey respondents (39 per cent) felt awkward
around someone with dementia, while 41 per cent found talking
to someone with dementia confronting.
“While it is perhaps going too far to say that people are afraid
of dementia, there are aspects of the condition that people find
uncomfortable and mentally distance themselves from,” the
report read. “This stigma can act as a barrier to public awareness,
understanding, acceptance and community education.”
One way the peak body hopes to address the report’s findings
is through the change to Dementia Australia, so that all who have
the condition are included and recognised.
Along with the name change, the state and territory Alzheimer’s
Australia organisations are now one body.
Chief executive Maree McCabe said the move would lead to
better outcomes for people with dementia.
“Having all these organisations and people who have been so
dedicated come together, unified as one, will help us to have
a bigger impact, be a stronger voice, provide better support
services, have a greater reach and, ultimately, better serve the
people we are here for, people living with dementia, their families
and carers.”
Aged Care Insite sat down with McCabe to talk about the name
change and the new report.
ACI: Why do you think most people aren’t fully aware of the
impact of dementia?
MM: I think there are lots of myths around dementia. One is that
it’s a normal part of ageing, and dementia is not a normal part of
again. People think: “Oh well, look, it just happens to old people.”
What they don’t realise is that there are about 20,000 Australians
in their 50s, 40s and 30s living with dementia.
It’s important for us to interrupt those myths and to get out
to people the facts, so if they’re supporting a loved one with
dementia, they know what they’re dealing with and how to best
support their loved one.
What were some of the other noticeable gaps in knowledge?
It was interesting that around 40 per cent of respondents didn’t
know that dementia’s not a normal part of ageing. Thirty-nine
per cent of people said they felt awkward around someone living
with dementia. Forty-one per cent said they found talking with
someone with dementia confronting.
The more we can raise the profile of dementia, have people
understand what it’s like for someone with dementia, then
people will feel much more comfortable in supporting people
and engaging with people living with dementia, which is what we
want. We want people living with dementia to be included in the
community, to continue to do the things they love, and to be well
supported in doing them.
Was there a finding you were pleased to see?
We released a report recently on stigma and dementia, and one of
the findings that was fabulous was that 50 per cent of people who
responded from the general community said they wanted to know
more about how they could support people living with dementia.
I think that’s really encouraging. People living with dementia will
feel much more included in communities when people raise their
own level of awareness.
Why was the decision made to change the organisation’s name?
We changed the name because dementia is the overarching term,
and there are about 100 different types of dementia. Alzheimer’s
is the most common, and we wanted people with all forms of
dementia to feel included. People often misinterpreted that
because our name was Alzheimer’s Australia, we only supported
people living with Alzheimer’s disease.
How will the new unified national body work to address the
lack of understanding of dementia in the community?
It gives us a stronger voice as one organisation and we had the
opportunity to be stronger, to be bolder, and to be louder in our
advocacy for all people living with all forms of dementia. ■
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