COGNISANCE

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. 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.

Dr Meredith Gresham and Nora Wong

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

New Program Helps People Find Their Way Forward After a Dementia Diagnosis

An innovative program launched by the COGNISANCE team aims to assist the estimated 60,000 Australians diagnosed with dementia each year to understand the next steps and change outdated perceptions of living with dementia.

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, created ‘Forward with Dementia’; a program designed 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.

“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,” said Professor Henry Brodaty.

By working together, we can help set people newly diagnosed with dementia on a better path.” Professor Henry Brodaty

“When I was first diagnosed, I felt lost and so overwhelmed. I didn’t know where to turn,” said Mr Bill Yeates.

“The Forward with Dementia program is really important as it guides people and their carers on their next steps.” Bill Yeates

“It gives them hope and will also reduce some of the stigma and stereotypes about living a life with dementia,” Mr Yeates said.

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: Dementia Australia, Dementia Alliance International, Alzheimer’s Disease International, World Health Organisation.

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.

‘Forward with Dementia’ also targets doctors who diagnose dementia. “We’ve consulted with diagnosticians throughout Australia, including specialists and support staff in Memory Clinics,” Professor Brodaty said. 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.

As part of the launch of Forward With Dementia, researchers hosted two webinars in October and November 2021.

Rethinking Support after Dementia Diagnosis: Unmet Needs and Evidence for Rehabilitation

The webinar covered unmet needs for information, psychosocial support, and treatments to optimise function and wellbeing for Australians living with dementia, and their carers. The webinar also presented practical suggestions on how clinicians can help people with dementia and carers obtain rehabilitation and additional supports after diagnosis.

This webinar was presented by Professor Lee-Fay Low of The University of Sydney, with a live Q&A featuring CHeBA CoDirector Professor Henry Brodaty and chaired by Associate Professor Lyn Phillipson of The University of Wollongong.

Professor Henry Brodaty Professor Lee-Fay Low Associate Professor Lyn Phillipson

Rethinking Dementia Diagnostic Conversation

This webinar helped diagnosticians improve communication of the dementia diagnosis and essential care planning. It highlighted four main themes – communication, compassion, hope and follow-up – and provided details of the ‘Forward with Dementia’ program.

This webinar was presented by Professor Henry Brodaty and chaired by Professor Lee-Fay Low of Sydney University.