" Knowledge of dementia is on the rise, however people report they are challenged as to how to support or communicate with someone living with the disease. "
Australians don’t know how to talk to people with dementia, survey finds, as figures reveal its increasing impact

Knowledge of dementia – which is the second leading cause of death in Australia – is on the rise, however people report they are challenged as to how to support or communicate with someone living with the disease, a survey has found.

This comes as updated figures 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 were released in the lead-up to World Alzheimer’s Day, which was on Friday 21 September.

Scientia Prof Henry Brodaty AO, Dementia Australia Honorary Medical Advisor said with the prevalence of dementia increasing it is vital that all Australians understand how they can 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 face following a diagnosis of dementia is social isolation, as friends, family and their community struggle 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 the fact it is 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 believe that others feel uncomfortable around people with dementia and two in three believe that individuals have 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, that they would say the wrong thing or that 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 that 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 is a perception in the community that there are a lot of services to support people living with dementia and that the community – in a general sense – cares 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, conducted by Reflections Research for Dementia Australia. The results were released during Dementia Awareness Month in September.

The full report of the survey can be found at https://www.dementia.org.au/dementia-awareness-month/learn-more-about-dementia.

 Posted: October 3rd, 2018
Discussion

Jill Elias said:

Things haven't changed in the last 22 years since my husband was diagnosed with early onset dementia. Most people don't even know that there are many different types of dementia, with varying symptoms, and just use the blanket term Alzheimers. Openly physical conditions get more acknowledgement than conditions of the mind and brain. Depression is just being noticed, but anxiety and other brain conditions, even those present from birth, are swept aside, not discussed openly.

Annabel Wellman said:

That is so very true. Most folk are shy to talk to my husband who has had dementia for 13 years. So what can be done to not only lift awareness but give realistic help in overcoming the communication dilemma ?

milton mcarthur said:

having had a diagnosis of dementia my wife has been ignored by her colleagues and friends as if she had an infectious disease . strangely however for myself it makes it easier as i have less disturbance

THEODOOR said:

I have been a carer for 2 1/2 years and still have great difficulty to communicate with my spouse. I would benefit more of a course in communication than a report that concludes that there is a problem.

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