Almost a third of Australians find people living with dementia frightening, according to a recent survey. In response, national peak body and charity Dementia Australia has called for urgent action and commitments from councils, businesses, community groups and leaders in every corner of Australia to take decisive action and be the change that makes their communities more dementia-friendly.
This week (18-24 September) is Dementia Action Week and, despite increasing awareness and dementia being the second leading cause of death, this fear and a lack of understanding about the condition leads to real-world impacts on people living with dementia.
Dementia Australia CEO Maree McCabe AM said she was alarmed by the results of successive surveys showing 32 per cent of Australians found people living with dementia frightening,[1] an increase from 23 per cent a decade ago.1
“There is also research,[2] commissioned by Dementia Australia, showing that 80 per cent of those with a loved one living with dementia felt that people in shops, cafes and restaurants treated people with dementia differently,” Ms McCabe said.
“These are our parents, grandparents, friends and neighbours now and in the future, it could be anyone reading this who might be diagnosed with dementia.
“These are devastating findings. This fear leads to stigma and discrimination which can have a real and distressing impact on people living with dementia, their families and carers. People may avoid seeking critical medical and social support and become increasingly socially isolated.
“Dementia is a largely invisible disease and what we can’t see, we don’t understand and what we don’t understand we are often afraid of and then avoid.”
Dementia Australia Advisory Committee Chair Bobby Redman, who lives with dementia, said fear of those living with dementia could stem from depictions in popular culture.
“If you have this stereotype of what a person with dementia is and it's somebody who is violent or aggressive, you’re seeing an extreme,” Ms Redman said.
“However, if you know someone with dementia, you'll realise that we’re just regular people with an illness. It’s similar to any type of discrimination or stigma – once you know people from that community, they're no longer scary.”
With an estimated 400,000 Australians currently living with dementia – an estimated 70 per cent of whom live in the community - Ms McCabe said the impact was being felt by families across the country and we must act now – and we all can all take some action.
“The good news is, there are so many simple things we can do every day to change this,” she said.
“We have the resources and information freely available on our website for anyone to make a start.
“Inspiring our communities to become more dementia-friendly – where people living with dementia are supported to continue to live their lives in the communities they know and love; where they are supported to continue to contribute to those communities, they have been part of their entire lives – can be so simple and empowering for all involved.
“We must act now for a dementia-friendly future. After all, a dementia-friendly future is one that is better for everyone in the community.”
Ms McCabe said there were many wonderful examples of organisations, councils and groups which had already demonstrated leadership and taken simple, practical actions to make their communities more dementia-friendly.
“We have such inspiring examples of communities that have created welcoming and inclusive environments for people impacted by dementia through our Dementia-Friendly Communities program. It shows that it can be done, it does have an impact and it doesn’t have to take much,” she said.
“People living with dementia, their families and carers need to see this replicated all over the country.”
Ms Redman said understanding and support were key to creating more caring communities that would benefit a lot of people, not just those living with dementia.
“We need to get back to the approach of people in the community looking after each other and not assuming that everybody can manage at the same level,” she said.
“I’d like to think that things are getting better with a greater focus from many businesses, recognising the different needs for access and inclusion of people living with invisible disabilities like dementia. If it’s good for people living with dementia, it’s good for everyone.”
During Dementia Action Week, Dementia Australia is providing information on its website (dementia.org.au/DementiaActionWeek) on actions that individuals and organisations can take to become more dementia-friendly.
Dementia Australia is the source of trusted information, education and services for the estimated more than 400,000 Australians living with dementia, and the more than 1.5 million people involved in their care. We advocate for positive change and support vital research. We are here to support people impacted by dementia, and to enable them to live as well as possible. No matter how you are impacted by dementia or who you are, we are here for you.
For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available. The National Dementia Helpline is funded by the Australian Government. People looking for information can also visit dementia.org.au
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Media contacts: Gabrielle Prabhu, 0447 253 583, [email protected]; Andrea Hogan, 0482 167 924, [email protected]
When talking or writing about dementia please refer to Dementia-Friendly Language Guidelines.
Note to Editors: We request, where possible, details for the National Dementia Helpline 1800 100 500 appear alongside news stories about dementia, as these stories often prompt questions or concerns: If this story has prompted any questions or concerns, please call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au.
[1] Ipsos Dementia Australia Report, 2023 and Perceptions and Understanding of Dementia, 2012, Ipsos