This 5-country, 10-university consortium led by CHeBA is driving change to reframe dementia from a “life sentence” to a diagnosis with strategies and support options that will enable people with dementia and their families to come to terms and live better with dementia. Based on our formative research, we listened to the experience of diagnosis and post-diagnostic support from the perspectives of people with dementia, family carers and health professionals. Results were negative. Diagnosticians reported delivering the diagnosis difficult, feeling they had little to offer patients and families Patients and families expressed that getting the diagnosis was like “stepping into a void”. They were overwhelmed and unsure of what to do next. These experiences are troubling. Evidence and clinical experience shows reframing the diagnostic conversation and giving simple information about what to do next gives a sense of hope. Over 2021, COGNISANCE has sought to address this gap. An intense series of co-design workshops bringing together people living with dementia, carers and a range of health care professionals were held, and a brand for a public campaign and website were developed, called Forward with Dementia www.forwardwithdementia.org/ au/. Forward with Dementia has curated content for our three audiences: people living with dementia, carers and health professionals. The website targets each groups’ specific needs, supplying information, tools, resources, and practical actions. The website is rounded out with personal stories and news items that challenge the status quo of “nothing can be done”. Prior to launch, Australian COGNISANCE team members along with honours student Jacky Zheng, from project partner University of Sydney, undertook comprehensive website user testing, to refine and ensure the experience of the user was a simple and was needed streamlined as possible. The public campaign, devised by A/Prof Lyn Phillipson, a public health academic from project partner University of Wollongong, was launched on 13 October with a webinar delivered by Chief Investigator and CHeBA codirector Prof Henry Brodaty. He spoke on ‘Rethinking a dementia diagnostic interview’ which was attended by over 200 people, primarily diagnosticians, from Australia, New Zealand Asia and India. A second webinar on 11 November saw Prof Lee-Fay Low, of project partner Sydney University, explore the evidence base of post diagnostic supports and therapies. Social media is used to back the key campaign messages and webinars are posted to our YouTube channel. While issues and needs are similar across the globe, campaigns vary based on local context. Partners in the UK and Netherlands support specialist dementia nurses to empower their clients.
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Dr Meredith Gresham and Nora Wong Across three provinces in Canada COGNISANCE teams seek to deliver key information to enable people with dementia and carers effectively seek help and support. Partners in Poland are directly challenging the stigma of otępienie, the word for dementia which translates as ‘halfconscious, dazed or bewildered’. Their campaign brings messages that dementia is a medical condition that deserves recognition and understanding. The campaign will continue into 2022.
Staff UNSW CHeBA Professor Henry Brodaty, Chief Investigator Dr Meredith Gresham, Project Co-ordinator Ms Nora Wong, Research Officer University of Sydney Professor Lee-Fay Low Professor Yun-Hee Jeon University of Wollongong Associate Professor Lyn Phillipson With international project partners from: University College London and Newcastle University UK; Maastricht Universit, Netherlands; Wroclaw Medical University, Poland; and McGill University, University of Waterloo and New Brunswick University in Canada.
Students Jointly supervised with University of Sydney Mr Jacky Zheng Ms Issra Allam
