Isolation and loneliness – the hidden toll of dementia

This Dementia Action Week (15-21 September), Dementia Australia is challenging Australians to reconnect with someone impacted by dementia to help combat the shockingly high level of social isolation many experience.

More than half of people caring for someone living with dementia said they felt isolated¹, which Dementia Australia CEO Professor Tanya Buchanan said was often a result of family and friends not understanding how important their support could be.

Professor Buchanan said the Dementia Action Week theme, ‘Nobody can do it alone’, highlighted the important role that friends and family members played in supporting those they knew who were impacted by dementia – either living with the condition or caring for someone.

She said that recent research had shown that four in 10 people living with dementia² said that following their diagnosis people didn’t keep in touch as they once had.

“People affected by dementia often tell us that friends and family drift away after a diagnosis, because they are unsure of how to interact,” Professor Buchanan said.

“This leads to social isolation, loneliness and a sense of abandonment, especially for carers who are emotionally stretched and often feel alone.”

There are an estimated 433,300 Australians living with dementia – including 29,000 diagnosed before the age of 65 – as well as 1.7 million people involved in their care.

“The Australian Institute of Health and Welfare reported last week that dementia is now the leading cause of death of Australians and that the number of people living with dementia is expected to exceed 1 million by 2065. So chances are that most of us know someone who is impacted by dementia.”

Professor Buchanan said Dementia Australia, in consultation with people impacted by dementia, had developed some simple and practical resources and tips to help people reach out to someone they knew.

“It could be as simple as picking up the phone to reconnect or offering to help with everyday tasks,” she said. “We have great resources on our website to make it easy for people to reach out and show they care.”

Dementia Australia Advocate Lil Mirtl, who lives with dementia, said connection was important for her and those around her.

“None of us can do this on our own, even if we'd love to be able to do so,” she said.

“As a society, we need to be aware of the needs within our community and be responsive to that.

“We don’t have time to feel uncomfortable or awkward about these conversations about dementia – we need to have them now.

“We’re all connected somehow to this and it’s okay to help, always with respect and with dignity for the person who is living with dementia.

“We have to pull together as a community to do this. We can’t do it alone as individuals, the government can’t do it alone, we need to all act together.”

The Dementia Australia website – dementia.org.au/dementiaactionweek – has a range of resources and information to support Australians to reconnect with someone impacted by dementia.

1 National Carer Survey 2024 

2 Ipsos Demetia Discrimination Report 2024

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Dementia Australia is the source of trusted information, education and services for the estimated 433,300 Australians living with dementia, and the estimated 1.7 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  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

Media contacts: Gabrielle Prabhu, 0447 253 583, gabrielle.prabhu@dementia.org.au

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.