Most people feel overwhelmed when first diagnosed with dementia. They despair of their future, lose hope and don’t know what to do next.
To address this, COGNISANCE, an international research collaboration, is launching ‘Forward with Dementia’, an innovative program to improve the diagnostic experience, post diagnosis support and connections for people with dementia and their carers.
The program was jointly planned and developed by leading researchers from UNSW Sydney, the University of Sydney and University of Wollongong in collaboration with colleagues from Canada, the Netherlands, Poland and the United Kingdom.
“In the past, people were told nothing could be done. They may have been given some medication, asked to return in six months, told to get their affairs in order and warned about driving. And that was it! Those days are over … or they should be! We can do a lot better,” said Scientia Professor Henry Brodaty, Project Leader and Co-Director of UNSW Sydney’s Centre for Healthy Brain Ageing (CHeBA).
Program resources, developed with the help of people living with dementia and their carers, include a website (forwardwithdementia.org/au) to guide people in the first year following diagnosis. The website offers information, advice and tools, and shares experiences and strategies used by people with dementia and their carers.
“It provides the information newly diagnosed people with dementia said they wanted and needed but struggled to find after diagnosis. They told us that much of the available information was too generic, and mostly focussed on more severe dementia. It was hard to find practical advice about what they should do after diagnosis, like how they could get rehabilitative treatments and maintain their independence. So this is what we have aimed to provide,” said Professor Lee-Fay Low, Professor in Ageing and Health at the University of Sydney.
Website tools include a checklist of questions for people to ask their doctor, suggestions for how and when to share their diagnosis with family and friends, and planning tools to achieve their goals and overcome barriers caused by dementia symptoms.
To get the message out across the country, the program includes a national social media campaign.
“‘Campaigning is important to change community beliefs about dementia. We need to shift perceptions and help people to understand there is a life to live beyond a dementia diagnosis. Lifestyle strategies and health and care services can effectively support people to move forward with a better quality of life,” Associate Professor Phillipson, Principal Research Fellow from the University of Wollongong, said.
Finally, ‘Forward with Dementia’ also targets doctors who diagnose dementia.
“We’ve consulted with diagnosticians throughout Australia, including specialists and support staff in Memory Clinics,” Professor Brodaty said.
“As part of the program launch, we’ve developed an educational video and tools for doctors, including a diagnostic checklist and information and resources they can provide to newly diagnosed patients.”
Bill Yeates, who was diagnosed with dementia in 2019, believes the Forward with Dementia Program will be very useful in helping others adjust to life with dementia.
“When I was first diagnosed, I felt lost and so overwhelmed. I didn’t know where to turn. The Forward with Dementia program is really important as it guides people and their carers on their next steps. It gives them hope and will also reduce some of the stigma and stereotypes about living a life with dementia,” Mr Yeates said.