Dementia: program to improve diagnostic experience, support

A new program called ‘Forward with Dementia’ hopes to improve the diagnostic experience, post-diagnosis support and connections for people with dementia and their carers.

An estimated 60,000 Australians are diagnosed with dementia each year — most feel overwhelmed when first diagnosed; they despair of their future, lose hope and don’t know what to do next.

To address this, an international research collaboration, COGNISANCE, has launched the program, which has been jointly planned and 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 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. They 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, 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.

We need to shift perceptions and help people to understand there is a life to live beyond a dementia diagnosis, said Associate Professor Lyn 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, Professor Phillipson said.

The program also targets doctors who diagnose dementia. “We’ve consulted with diagnosticians throughout Australia, including specialists and support staff in memory clinics, Professor Brodaty said.

“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, the researchers have developed an educational video and tools for doctors including a diagnostic checklist and information and resources that can be provided 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.

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