Isolation another burden for those with dementia

Those living with dementia are increasingly isolated from friends and family and left out of family and social gatherings, a new study finds.

Jim Rogers, aged 57, was a former television journalist who has been diagnosed with early onset dementia. Picture: Jasper Kyle.

People living with dementia are routinely avoided by people they know and left out of family and social gatherings, new data shows.

And many become increasingly isolated from friends and family who no longer keep in touch with them as they once did, it finds.

Using data from more than 1000 carers, family and friends of someone either living with dementia or who has died from it, the Ipsos poll finds 36 per cent say the person with dementia is never or rarely invited to social functions, and a similar proportion is often or always avoided by people they know.

One in four say people go out of their way to avoid their loved one with dementia when they are in public, the poll commissioned by Dementia Australia finds, and almost half say people don’t keep in touch anymore.

Dementia Australia chief executive Tanya Buchanan said the survey “backs up what we are repeatedly told – that it is not just the physical symptoms that come with a diagnosis of dementia that are so impactful and life-changing”.

The social isolation of Australians with dementia is all the more concerning given its increasing prevalence, with 421,000 people living with dementia, two-thirds living in the community and a third in aged care. That number is expected to almost double in the next 30 years as the population ages.

There are also growing numbers of people living with younger onset dementia, currently 29,000 and expected to grow to 41,000 by 2054. For them, the social isolation is keenly felt.

Former television journalist Jim Rogers, 57, was one such person, diagnosed with younger onset dementia two years ago. He first noticed changes after experiencing some difficulty problem solving and recognising people he’d previously met or places he’d been. “Then on one visit to my cardiologist on another matter, they asked me to put my phone on silent, and I couldn’t do it. It was the trigger for me to seek out more information, which led to my diagnosis,” Rogers said.

With the diagnosis came a range of emotions and feelings. “The first was shock. I was sure it was something I could fix with a pill and it would go away, but it’s a terminal illness with no cure.”

From there, Rogers pushed ahead, putting together a physical and mental program designed to delay his degeneration. Yet the change to his life has been profound. “It’s been isolating, and made me feel quite lonely. Your career goes … and the social element of that. All at a relatively young age,” he said.

He is hosting a seven-part podcast series commissioned by Dementia Australia to support people living with dementia, and their carers and families.