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Peer support, coaching trial for people diagnosed with dementia

People newly diagnosed with dementia will have access to coaching and peer support under a University of Sydney trial.

Researchers hope the move will help those who receive a diagnosis process the news, and stay active and involved in their lives and community.

Lead researcher Associate Professor Lee-Fay Low said the coaching has the potential to fill a vital service gap.

“Following a dementia diagnosis many people withdraw from their friends and family for fear they will deteriorate quickly and can suffer immense grief or depression,” said Low. “With a cure still some way off it’s essential that we help people with early dementia to live well.”

The Dementia Lifestyle Coach pilot will see participants engage in 14 counselling and coaching sessions from a registered psychologist over a six-month period. They will also have regular phone or Skype catch-ups with a peer supporter who lives with dementia.

One such supporter, retired psychologist Bobby Redman, said she wants to help people see that they can fight back. “You can’t just give into it,” she said.

Redman was diagnosed with frontotemporal dementia two-and-a-half years ago at age 66. She said while her story isn’t common – as her psychology background helped her realise something was wrong – a dementia diagnosis is still a shock for anyone.

“And what’s probably hardest is that, like in my experience, many people with early dementia are just told to come back when things get worse or to get their things in order.

“But I’ve learnt that there are tools and strategies you can put in place to help manage the impact of dementia,” she added. “Even simple things like using my phone to set daily reminders to drink water and stay hydrated.”

Redman would like to see more clinicians trained to provide such strategies to help people overcome simple issues.

The pilot study will run over a 12-month period. The research team will assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.

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One comment

  1. I think this service is great. Cant wait to see it rolled out Nationally through someone like Dementia Australia with some government funding.

    My mum had regular support calls from the Lung Foundation when she was going through the long diagnostic stage with Lung Cancer while they were trying to “Stage” her cancer until she was eventually hospitalized for palliation. She really enjoyed these calls. She was offered the service and asked how frequently she would like to be called, and best day of week, AM or PM. And they always called her, but she could call up if she had further questions.

    I also used the service of the Cancer line during my Breast Cancer treatment phase. Why should there not be a support line for Dementia sufferers? About time!

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