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.
The program provides the information newly diagnosed people with dementia said they wanted and needed but struggled to find after diagnosis.
“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 Professor Henry Brodaty, Project Leader and Co-Director of UNSW’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, tools, shared experiences and strategies used by people with dementia and their carers.
“People told us that much of the available information was too generic, and mostly focused 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 Low.
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 also includes a national 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,” said Associate Professor Lyn Phillipson, Principal Research Fellow at the University of Wollongong.
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,” said Professor Brodaty.
“Many doctors find telling people they have dementia very difficult, so we’re trying to improve communication and encourage doctors to start dementia care planning and make referral to essential services, including counselling and allied health.”
“As part of the program launch, we will be hosting a webinar next Wednesday 13th October at 5pm called ‘Re-thinking the dementia diagnostic conversation.’ We’ve also 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.
Declaration: 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 Organization.