As we found in the World Alzheimer Report 2021, there are pervasive difficulties around both receiving and delivering a diagnosis of dementia. According to a global survey conducted for the report, 55% of people said they were given inadequate information at diagnosis and 62% of healthcare practitioners believed that nothing could be done following the giving of a diagnosis.
While the findings from COGNISANCE’s Forward with Dementia project further highlight the wide-reaching difficulties around dementia diagnosis, the project also further substantiates how incredibly poignant this moment in time is. Through resetting and reframing the conversation around diagnosis, there is incredible potential for not only challenging stigmatic attitudes and ideas around dementia, but also a world where clinicians are well trained and confident in the delivery, conversations, next steps and signposting further support.
Despite many guidelines across the globe about how to communicate the diagnosis of dementia, we are still not doing well.
The provision of practical support to help people with dementia and families take positive actions to live well following diagnosis is also lacking. In our research, we listened to experiences of diagnosis and post-diagnostic support from people with dementia, family carers and health professionals in Australia, Canada, Netherlands, Poland and the UK.
The results were worrying.
Diagnosticians often reported difficulty in delivering the diagnosis, feeling they had little to offer individuals and families. People diagnosed with dementia and families described receiving the diagnosis like “stepping into a void”. They were overwhelmed and unsure of what to do next.
Evidence and clinical experience show that changing the diagnostic conversation to give simple information about what to do next can give a sense of hope and set people on the path to adapt and live better with a diagnosis.
Our international project, COGNISANCE, has developed information and resources to help clinicians reframe the diagnosis from ‘nothing can be done’ and ‘get your affairs in order’ to one that emphasises you can live a full and meaningful life after diagnosis. For people living with dementia and carers, we provide information tailored for people with dementia and for carers, including a practical and evidence-based guide of what to do and where to go following diagnosis.
Information and resources are delivered through a new website called Forward with Dementia, which was developed and tested with people living with dementia, carers and a range of health care professionals.
A series of intensive workshops with these audiences and our stakeholders helped to shape key messages for the website and public campaigns across the five countries involved. The campaigns are critical to this project, designed to convey these key messages of hope and support to people living with dementia and carers, as well as providing clinicians with tools to enable more effective post-diagnostic support.
Research groups in each country investigated the way in which dementia is perceived and how people are currently supported or not supported, as well as why negative stereotypes about dementia and lack of support persist. Based on our findings, campaigns were devised to respond to conditions specific to each country, which then target people, services and organisations that have the potential to make a positive difference.
Due to the ongoing pandemic, we have adapted our campaigns to run primarily online, using webinars to reach health and care professionals and the public. Social and mainstream media, including TV, radio and newspapers, have also been important ways of reaching the public and directly targeting professional bodies. Additionally, we have worked alongside Alzheimer organisations and other relevant bodies in our partner countries to help bolster the messages that support following diagnosis is critical and that much can be done to live well with dementia.
For example, the Polish research team at the Medical University of Wroclaw led a dynamic campaign to place dementia squarely in the public domain. They bathed the main city stadium in purple light (the campaign colour for dementia), hosted a street art exhibition and advertised the Forward with Dementia message (Razem przed siebie) on city buses. They even ended up conducting public dementia screening on buses!
Our next steps are to evaluate the impact of the programme and create a playbook to encourage other countries who are interested in improving delivery of dementia diagnosis and support following diagnosis.
We hope to change the narrative around dementia diagnosis and post-diagnostic support from “stepping into a void” to “moving forward, positively”.
The Forward with Dementia website currently has websites available in English, Polish, Dutch and French. If you are living with dementia or a carer in one of the participating countries, consider completing a survey about the website to help us improve, which can be located under the ‘Get involved’ tab on each country’s home page.
COGNISANCE (Co-Designing Dementia Diagnosis And Post Diagnostic Care) is led by Professor Henry Brodaty the Centre for Healthy Brain Ageing at the University of New South Wales, Australia. The project was awarded by the European Union Joint Programme on Neurodegenerative Disorders and funded by national health funding bodies in each country.