On February 27, the UK Science and Innovation Network organised the last of a series of four Young Leaders events on Dementia. Following similar events in Ottawa, Tokyo and Washington DC, the event in London brought together 45 young delegates from 18 countries in the Locarno suite of the Foreign & Commonwealth Office. This event was organised by SIN France colleagues, Alison MacEwen and Sara Gill, together with Janice Hardy from SIN London. The event was also supported by the European Research Joint Programming Initiative on neurodegenerative disease (JPND) and Alzheimer Europe
This exciting day kicked off with some introductory remarks from the Head of SIN and climate Department and FCO Deputy Chief Scientific Adviser– Andrew Jackson – followed by presentations from Philippe Amouyel (chair of JPND and World Dementia Council Member), Jean Georges (Executive Director, Alzheimer Europe), Lee McGill (Private Secretary to World Dementia Envoy, Secretariat to World Dementia Council) and Hilary Doxford (1st World Dementia Council member living with Dementia and Vice-Chair of the European Working Group of People with Dementia) and myself presenting feedback from previous Young Leaders events in Canada, Japan and the US. All presentations emphasized that the time to come with concrete solutions and actions is now, and that these young voices in the room need to be innovative and creative to make this happen. I would like to particularly highlight Hilary’s poignant presentation and narrative of her life after she was diagnosed with early onset Alzheimer’s disease in 2012. Hilary, aged 53, wrote a blog for the UK’s Department of Health on three words to describe being diagnosed with dementia: fear, despair and hope. During her moving speech to the young delegates she also mentioned: I don’t want someone to do it for me, I want to do it myself!.You can also watch her and her husband, Peter, talking about her diagnosis in this film.
The young leaders’ discussions focused around solutions to four main themes: care, cure, research and awareness. Conversations about awareness highlighted the importance of adequate education in schools and a novel (at least for me) idea to encourage caring as a career, isn’t that absolutely brilliant?. Care-related discussions focused on early entry into clinical trials, standardization for data and resource sharing – an open data concept. Delegates also debated the harmonization and centralization of research, guidelines, regulations, data platforms, global registry of projects (past, current and future) and a better mechanistic understanding of the disease. They spent an important amount of time discussing those four themes, and their recommendations are now being drafted into an EU communiqué, to be compiled with those from Canada, Japan and the US into one Global Young Leaders declaration to be presented at the WHO Ministerial conference in Geneva.
Last but not least, one of these EU young delegates will join Laura, William and Mitsunobu representing Canada, the US and Japan respectively to participate and represent the G7 and EU young leaders in the 1st WHO Ministerial Conference in Geneva (16-17 March, 2015) .Thus, stay tuned for more innovative young voices to be heard in the near future.
We (SIN and global partners) are now focusing on processes to institutionalize this youth global network and take forward collaborative action (beyond the G7 and EU countries) in parallel with the continuous support to the World Dementia Council work – ideas are welcome!
We look forward to continuing cooperation between SIN, the global network of Young Leaders, the World Dementia Council, national and international charities and many more partners to come.