A new program aims to improve the post-diagnosis experience of the estimated 60,000 Australians who find out they have dementia each year.

The initiative also targets doctors with resources including a diagnostic checklist and information and resources they can provide to newly diagnosed patients.

International research collaboration COGNISANCE this week launched the Forward with Dementia program to improve the diagnostic experience and post-diagnosis support available for people with dementia and their carers.

The program was 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 UK.

Living positively after diagnosis

Professor Henry Brodaty

“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. Those days are over,” says project leader Professor Henry Brodaty from UNSW Sydney’s Centre for Healthy Brain Ageing.

“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 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.

Practical advice

Professor Lee-Fay Low from the University of Sydney says the website provides the information newly diagnosed people with dementia said they wanted and needed but struggled to find after a 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,” she said.

“So this is what we have aimed to provide.”

Supporting doctors

Resources 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.

Many doctors find telling people they have dementia very difficult, Professor Brodaty says.

“We’ve consulted with diagnosticians throughout Australia, including specialists and support staff in memory clinics,” he said.

“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.”

Follow the campaign

Twitter: @FowardwithDementia_AU

Facebook: @ForwardwithDementiaAU

This story first ran on Community Care Review.

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