By Jean Georges, Executive Director, Alzheimer Europe
Dementia affects around nine million people in Europe. Despite many efforts, no treatment exists to date which could cure, prevent or slow down its progression. Globally, and at European level, a lot of research is being conducted which is helping to better understand what causes dementia, the risk factors, its progression, how to cope and live better with the condition and to develop more effective treatments and care options.
The meaningful involvement of the people living with the condition and their carers in all these types of research is vital. In the case of dementia, examples of this involvement exist, but several challenges still need to be addressed. For example, existing misconceptions and stigma around dementia need to be challenged. People living with dementia should feel empowered, enabled and supported and should be afforded the opportunity to take part in and contribute towards research – if they so wish. They can play an important role as research participants and some may also like to have the opportunity to influence and have their say about the type and the areas of research that they would like to see prioritised, how this research should be undertaken or how the findings of this research should be disseminated to the dementia community and to the wider public.
At Alzheimer Europe, we have been pioneers in promoting the involvement of people with dementia in our own work and in research. A key objective of our strategic plan is to provide a voice to people with dementia and their carers so that they can be full partners in policy development, research and service design. In 2012, inspired by the work that had been done in Scotland, we set up a working group of people living with dementia (the European Working Group of People with Dementia). This group of people and their supporters have provided very relevant input to several European projects (such as EPAD, ROADMAP, MinD and PACE), have contributed to published scientific articles and are helping to bring the voice of the experts by experience – “the lived experience” – to many discussions and debates around dementia research.
I am very proud of this work and of the work they are now doing in PARADIGM. I see our involvement in PARADIGM as a great opportunity to continue growing in this area – to improve the way we (AE) and our member associations around Europe involve people with dementia and to be able to demonstrate, in a solid way, the important impact that experts by experience can make.
I particularly appreciate the opportunity to work together and learn from the experience of other patient groups, companies and organisations which have been doing this work for so many years. Patient engagement is a “win-win” for all, researchers, regulators/HTAs, payers, companies, patients and their families and society in general. Nobody should be excluded or left behind because of their condition, disability, age or any other circumstances.
PARADIGM is a great platform to imagine and advocate for different and better ways of engaging patients in research and medicines development. Let’s make the most of it!
Jean Georges, Executive Director, Alzheimer Europe
Jean Georges has been Executive Director at Alzheimer Europe since 1996. Before joining the organisation, he worked as a journalist and as a parliamentary assistant to members of the Luxembourg and European Parliament. He is Principal Investigator for Alzheimer Europe in a number of IMI, FP7 and Horizon2020 projects and has contributed to several academic papers on the field of dementia. He is work package co-lead for dissemination and communication of the IMI projects: AMYPAD, EPAD and ROADMAP. He represents the organisation in other organisations, including the Patient and Consumer Working Party of the European Medicines Agency.