G7 Dementia Legacy event in USA

18 February 2015 - The fourth G7 Legacy event was held in the United States on 11 February, following a two-day conference on the state of the science at the National Institutes of Health in Bethesda, Maryland (near Washington DC).

[Photo of Marc Wortmann speaking about Importance of Global Collaboration in Bethesda]The event was a half day meeting and included updates from the World Health Organization on its research prioritisation project, which ADI is also involved in (first results will come out in March 2015), and from the Organisation for Economic Development and Cooperation (OECD) on big data and on dementia research budgets from the G7 countries. The USA has the largest budgets, but these are still far behind other major disease areas.

The G7 countries and the European Union gave updates as well. Interestingly Canada, Japan and the UK are now planning big cohort studies looking at multiple chronic diseases, including dementia, and their risk factors.

The Canadian government has started a Dementia Friends programme with the Alzheimer Society of Canada, using the experiences of Japan and the UK. France reported on the launch of their new plan for neurodegenerative diseases: Alzheimer’s and other dementias, Parkinson’s, MS, ALS and Huntington’s disease. It has 4 priorities, 12 issues and 96 actions.

Germany started local dementia alliances in September 2014 and more than 1000 local info sites are now enrolled. They are also implementing Dementia Care Managers who serve as link with patients and the health system. The new centre on neurodegenerative diseases (DZNE) has a budget of €80m a year and has created partnerships with other European countries, Canada and the USA.

The US congress has asked what it would cost to reach the 2025 goal of finding a cure or disease modifying treatment. It will be interesting to see the answer. At the same time, the Alzheimer’s Association released a report on how much could be saved if dementia onset can be delayed by 5 years, and it is a massive amount.

Italy launched its plan in November, despite the challenge with the role of its regions. National plan areas are prevention, network of services, integrated care, research, ethics, fight against stigma and integrated services.

Japan also launched a new ‘Orange plan’ on 27 January 2015. They calculated two estimates: one with stable prevalence rates and another with increases in diabetes rates. The new plan has 7 pillars and aims for people with dementia living with dignity.

Finally, the UK is working on a number of initiatives and partnerships. One is 'Join Dementia Research', a database where people can register to be part of research. It was also clear at the event, behind the scenes, that the UK is still the driving force behind the G7 initiative.

The European Union is spending an impressive amount on research through its programmes JPND (Joint Programming on Neurodegenerative Diseases), Horizon 2020, Human Brain Project and IMI, a big public-private partnership. Patient organisations are now involved in policy making.

In the afternoon the World Dementia Council met to talk about the future of this global initiative and it is fair to say that this is not yet completely clear, but hopefully there will be some future initiatives. At the same time the Alzheimer’s Association (US) and ADI hosted a meeting with non-profit organisations who fund research in the USA and Europe. One of the things Alzheimer’s Association has set up with the US government is the International Alzheimer’s Disease Research Portfolio (IADRP), which has now 30 agencies participating and 4000 studies in its database. This is a useful collaboration to map out what everybody is doing and avoid duplication. As a result, Alzheimer organisations that fund research get to know each other better and a number of collaborations have started, even across borders (USA, Canada and UK; UK and Netherlands).

This was a very good event to attend and I really noticed a much bigger appetite for collaboration between these organisations than in the past.

Marc Wortmann
Executive Director, ADI