Australians don’t know how to talk to people with dementia, survey finds, as figures reveal its increasing impact

Thursday 20 September 2018

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 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, which is 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 have been released during Dementia Awareness Month, which runs throughout September. 

The theme is Small actions Big difference and aims to highlight the small actions people can take to make a big difference to people impacted by dementia, their families and friends.

As part of Dementia Awareness Month, Dementia Australia is asking the community to pledge their support to become a Dementia Friend, which gives people a better understanding of dementia and, through that, empowers people to do small, everyday things that can make a difference to someone living with dementia.

For instance, being patient in a shop queue, offering assistance if someone appears disoriented or confused, allowing extra time for inclusion in a conversation or taking in how the environment might be impacting on someone’s ability to focus or engage.

“Our Dementia Friends program that has been developed in conjunction with people living with dementia and carers is an engaging and positive way for people to learn more,” Ms McCabe said. 

“It aims to remove the obstacles created when friends, family and the community are unsure how to provide better support and to transform the way we all, as a community, think, act and talk about dementia. Through a 15 minute online module that includes information and videos of people with the lived experience, everyone can find out what small actions they can do to make a big difference in their community to the lives of all people impacted by dementia.”

More than 5,000 Australians have already signed up to become a Dementia Friend. People can find out more, and sign up, at dementiafriendly.org.au.  We invite you to sign up too. The full report of the survey can be found at https://www.dementia.org.au/dementia-awareness-month/learn-more-about-dementia.

 

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Dementia Australia is the national peak body and charity for people, of all ages, living with all forms of dementia, their families and carers. It provides advocacy, support services, education and information. An estimated 425,000 people have dementia in Australia. This number is projected to reach more than 1.1 million by 2056. Dementia Australia is the new voice of Alzheimer’s Australia. Dementia Australia’s services are supported by the Australian Government.

National Dementia Helpline 1800 100 500, Interpreter service available, (The National Dementia Helpline is an Australian Government Initiative)

Dementia is a National Health Priority Area - www.dementia.org.au                                                                                                   

Media contacts: Christine Bolt, 0400 004 553 / christine.bolt@dementia.org.au

When talking or writing about dementia please refer to Dementia Language Guidelines.