Among the latest studies and pilot programs undertaken by universities is a new Sydney-based trial by the University of Sydney which is offering coaching and peer support to help people newly diagnosed with dementia cope with the prognosis and stay actively involved in their lives and community.
The Dementia Lifestyle Coach pilot study, a collaboration between the University’s Faculty of Health Sciences and Brain and Mind Centre, will see participants 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 support who lives with dementia.
Lead researcher, Associate Professor Lee-Fay Low, says 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.
She adds that following the 12-month long pilot, researchers will aim to assess the impact the coaching program has on participants’ mood, independence, activity levels and quality of life.
“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,” she explains.
“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 live well.
“We hope that giving people the right support, tools and strategies from the onset could help achieve this.”
As well as the focus on dementia by the University of Sydney, South Australian-based Flinders University students and researchers have also been looking into the need for greater dementia education, as well as how non-pharmacological therapy programs can improve outcomes for older people - including people with dementia and their families.
Lead researcher in the Flinders University study paper What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys Monica Cations says the research shows that the general public still believes dementia is a normal and non-preventable part of ageing.
“We were surprised to find that dementia literacy is still so poor, given how much effort has been put into improving understanding,” Ms Cations says.
“The view that dementia is a normal part of ageing with few treatment options is a demonstrated barrier to both preventive health behaviours and to help seeking and diagnosis in the event that symptoms emerge.”
The second paper released by Flinders researchers - Economic evaluations of occupational therapy approaches for people with cognitive and/or functional decline: A systematic review - also shows benefit for people living with dementia during their day-to-day life.
“The benefits of these interventions [removing clutter, or adjusting lighting] were evident for supporting people with dementia and their caregivers, as well as the caregivers of people with other neurodegenerative diseases and older people living in the community with different functional limitations or decline,” co-author and Flinders PhD candidate Miia Rahja explains.
Executive Director Consumer Engagement, Policy and Research at Dementia Australia, Kaele Stokes, says research and study into dementia is vital.
“As dementia is the second leading cause of death in Australia and investment in this space will help minimise its impact in the future,” she says.
“There is an urgent need to provide quality dementia care and it is through university study, that health professionals and career researchers can receive specialised knowledge and ultimately launch a career in this field.
“The Dementia Australia Research Foundation aims to build capacity in the dementia research workforce by funding Australia’s talented new and early career researchers and students.”
Dr Stokes adds that scientists are working hard to delay, prevent and ultimately find a cure for dementia, noting the major barriers to the development of new interventions and treatments in Australia are the lack of research capacity, funding and infrastructure, especially for those in the earlier stages of their career.
“We support further and continued research and study into dementia by universities,” she says.
“Dementia Australia recognise this research and study is critical in increasing awareness, and improving the lives of people living with dementia their families and carers.”
University of Sydney Associate Professor Lee-Fay Low has reiterated the importance of dementia research, for both her personally and researchers across Australia and the world.
“Dementia is the second leading cause of disease burden in older Australians, so we need more research to help decrease this burden through prevention, cure and better care,” she says.
“On a personal note, I’m driven to conduct research that is going to make a real-world difference.”