An innovative program launched last October aims to assist the estimated 60,000 Australians diagnosed with dementia each year to understand the next steps and change outdated perceptions of living with dementia.
“When I was first diagnosed, I felt lost and so overwhelmed. I didn’t know where to turn,” said Bill Yeates, who was diagnosed with dementia in 2019.
“The Forward with Dementia program is really important as it guides people and their carers on their next steps,” he added. “It gives them hope and will also reduce some of the stigma and stereotypes about living a life with dementia.”
Forward with Dementia aims to improve the diagnostic experience, post diagnosis support and connections for people with dementia and their carers.
It 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).
“People with dementia can live positively for many years. There are treatment strategies and we need to spread the word and assist diagnosticians and other health workers to improve their practice. By working together, we can help set people newly diagnosed with dementia on a better path.”
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 … practical advice like how they could get rehabilitative treatments and maintain their independence,” 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,” said Associate Professor Phillipson, Principal Research Fellow from the University of Wollongong. “Lifestyle strategies and health and care services can effectively support people to move forward with a better quality of life.”
Forward with Dementia has also developed an educational video and tools for doctors which include a diagnostic checklist and information and resources they can provide to newly diagnosed patients.
The Forward with Dementia program was funded by the NHMRC and the European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND), a global research initiative aimed at tackling the challenge of neurodegenerative diseases. Key collaborators include Dementia Australia, Dementia Alliance International, Alzheimer’s Disease International and the World Health Organisation.
Follow the social media campaign at: Twitter: @FowardwithDementia_AU Facebook: @ForwardwithDementiaAU