COGNISANCE, an international research collaboration, has launched Forward with Dementia, a new program to improve the diagnostic experience, post-diagnosis support and connections for people with dementia and their carers.
The program has been developed by researchers from UNSW Sydney, the University of Sydney and University of Wollongong in collaboration with colleagues from Canada, the Netherlands, Poland and the UK.
“In the past, people were told nothing could be done…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).
The resources available through the program’s website (www.forwardwithdementia.org/au) have been developed with involvement from people living with dementia and their carers, and are intended to guide people in the first year following diagnosis.
Examples of resources on the website 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. Resources aimed at healthcare professionals include information and tools to improve communication of the dementia diagnosis and post-diagnostic support.
“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 Lee-Fay Low, from the University of Sydney, who is a member COGNISANCE’s Australian research team. The other members of the Australian team are: Professor Yun-Hee Jeon (University of Sydney), Associate Professor Lyn Phillipson (University of Wollongong, and AJDC Co-Editor), Dr Meredith Gresham (CHeBA, UNSW Sydney) and Nora Wong (CHeBA).
The Forward with Dementia program has been funded by the NHMRC and the European Union (EU) Joint Programme – Neurodegenerative Disease Research (JPND), and key collaborators include Dementia Australia, Dementia Alliance International, Alzheimer’s Disease International and the World Health Organization.
(Pictured L-R) Professor Henry Brodaty, Project Leader and Co-Director of CHeBA & Professor Lee-Fay Low, COGNISANCE Australian research team member