“I want to try and help people see they can fight back...you can’t just give into it.”
Lead researcher Associate Professor Lee-Fay Low said the pilot study has the potential to fill a vital service gap with the latest research suggesting keeping the mind and body active could slow the progression of dementia.
“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, Associate Professor in Ageing and Health at the University of Sydney.
“There are over 400 000 Australians currently living with dementia and with a cure still some way off it’s essential that we help people with early dementia to live well.
“We hope that giving people the right support, tools and strategies from the onset could help achieve this.”
The Dementia Lifestyle Coach pilot study is a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre.
Participants will receive 14 counselling and coaching sessions from a registered psychologist over a six-month period and will also have regular phone or skype catch ups with a peer supporter who lives with dementia.
Retired psychologist Bobby Redman is one of the peer supporters involved in the study.
Bobby was diagnosed with frontotemporal dementia two and half years ago at age 66 after she noticed problems remembering the names of close friends and an inability to find the right words to express herself.
“My story is a bit different because with my psychology background I knew something was definitely wrong - but a dementia diagnosis is still a shock for anyone,” said Bobby.
“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. Even simple things like using my phone to set daily reminders to drink water and stay hydrated.
“What I’d like to see is more clinicians trained to provide these strategies to people to help them overcome simple issues.
“I want to try and help people see they can fight back. I think that’s the key….you can’t just give into it.”
The pilot study will run over a 12-month period, with researchers aiming to assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.
The University of Sydney is trialling a counselling and coaching program for people living at home recently diagnosed with early dementia. To be eligible you must have received a diagnosis of early dementia within the past 6 months. Read more information about the Dementia lifestyle coaching study or contact Dr Annica Barcenilla on +61 2 9351 9837 or firstname.lastname@example.org