12 Dec 2018

On December 5, global leaders came together at the Wellcome Trust offices in London for a meeting of the World Dementia Council, the body charged with leading the global response to dementia and coordinating international efforts toward effective therapy by 2025. Their objective was to reflect on developments since the WDC’s inception five years ago, and to outline hurdles and next steps for the future.

The World Dementia Council held its first summit meeting since 2013.
Advances were in funding, awareness, and trials.
Challenges remain on data-sharing and many other fronts.

Called “Defeating Dementia: Progress and challenges on the road to 2025,” the meeting convened about 160 stakeholders from about 20 countries. Government leaders included former U.K. Prime Minister David Cameron, U.K. Secretary of State for Health and Social Care Matt Hancock, Dutch Deputy Prime Minister and Minister of Health Hugo de Jonge, Organisation for Economic Co-operation and Development (OECD) Deputy Secretary-General Ulrik Vestergaard Knudsen, and Japanese Assistant Minister for Health and Welfare Kenji Suwazono. They sat alongside dementia advocacy leaders, patients, and scientists while they gave updates and strategized on research funding, data-sharing, improvements in care, technology use, clinical trials, and changes to public policy. “This is the body that’s able to ensure that the global conversation is happening, and that dementia remains high up on the international agenda,” said WDC member Samantha Budd Haeberlein, Biogen, Cambridge, Massachusetts.

“The WDC is the one place that brings together international organizations, national governments, industry, researchers, and NGOs from around the world to be a center and voice of the G8 commitment to dementia,” said George Vradenburg of the Washington, D.C.-based UsAgainstAlzheimer’s, and also a council member.

The WDC got its start in December 2013, when the U.K. government hosted the G8 Dementia Summit in London (Dec 2013 news). The council has now grown to 24 members from research, academia, industry, and patient groups. Associate members include government leaders and international organizations such as OECD and the World Health Organization (WHO). Since 2013, the WDC has met twice annually to review developments and update the international agenda on dementia. Its recent five-year report lays out the current state of dementia research, funding, and care.

David Cameron, former U.K. Prime Minister.

“Five years ago, when I sat around that G8 table, I was daunted when I explained the challenge to prime ministers and presidents,” Cameron said in his address. “Today I am more confident. I believe there is light at the end of a very long tunnel.”

As in 2013, this WDC summit meeting included the voices of patients and families facing dementia. A speech from Marty Reiswig, a DIAN participant from Colorado, opened the meeting. His grandfather along with 10 of his 13 siblings, plus Reiswig’s father, succumbed to early onset Alzheimer’s due to a presenilin-2 mutation (Alzforum book review, 2010). Reiswig does not know his genetic status or that of his children, but in 2025 he will be the same age one of his uncles was when he developed symptoms. “Look at how far you’ve come in the past five years in understanding the disease and increasing funding to alter its course,” he told the audience. “Now is the time to rally the masses, slash through red tape, open the bank vaults. Roll out the heavy artillery of research and do whatever it takes to defeat this disease.”

The past five years have seen progress in funding. One example is the U.S. investment in research, which has grown from $562 million for Alzheimer's disease in 2013 to 2.34 billion for AD and related dementias in fiscal year 2019 (Sep 2018 news). That has helped attract new researchers and outside expertise to the field, said Richard Hodes, National Institute on Aging, Bethesda, Maryland. “These are new people in NIH- and NIH-AD/ADRD-funded research. They will enhance the field with their own talent, visions, and perspectives.”

The WDC helped spur creation of the venture capital Dementia Discovery Fund for investment in dementia drug development (Mar 2015 news). Its initial group of investors has grown to include Bill Gates and the AARP, and has raised $350 million. An additional $320 million from the U.K. Medical Research Council, Alzheimer’s Society, and Alzheimer’s Research U.K. established the Dementia Research Institute (May 2016 news). Tens of millions of dollars have gone toward research in biomarkers and new therapies. On the day of the summit, the U.K. government announced £79 million to establish a cohort of up to five million people ready to participate in research on early detection and diagnosis of multiple diseases, including dementia.

While still more money is needed for this long-underfunded set of diseases, funding was not the focus of the meeting, said Simon Lovestone, now at Janssen Pharmaceuticals in Beerse, Belgium. “It was more about obstacles to progress, and how can we overcome them,” he told Alzforum. A big one is sharing data and samples. The WDC talked about a need for G7 and G20 countries to formulate new rules to facilitate data-sharing between countries. There was also discussion on how to encourage scientists to share their data as well as use data generated by others. To that end, Paul Stoffels of Johnson & Johnson announced that J&J subsidiary Janssen and its partner Shionogi Pharma will make blood and cerebrospinal fluid samples collected in their trials of the discontinued BACE1 inhibitor atabecestat available to scientists funded through the Diagnostics Accelerator program. A committee still needs to work out details of which samples will be available and how they can be used, but the plan is to make them available in 2019 for use in biomarker studies, said Lovestone.

On clinical trials, the number of dementia trials has more than doubled since 2013, and several promising candidates are now in the pipeline across industry, said Budd (Therapeutics database).

Awareness of dementia is growing around the globe, thanks in part to the WHO's global dementia action plan. As part of that, the year 2017 saw the start of the WHO’s Global Dementia Observatory, a data and knowledge platform for information on policies, service delivery, and research worldwide. WHO is also taking steps to help countries develop their own dementia plans.

In projecting a sense of hope, the WDC summit stood in contrast to a field that can seem bleak in the face of failed trials and rising case numbers. “This energy, enthusiasm and collaboration provides the foundation for faster speed in the coming seven years toward the 2025 goal,” said Vradenburg. “There’s a sense of cautious optimism coming out of the movement now that wasn’t there five years ago.

To be sure, daunting challenges remain. They range from improving diagnosis and care to harnessing technology in research and treatments to achieving greater public recognition. Yves Joanette, Canadian Institutes of Health Research, said that even though science has not yet delivered solutions for people with dementia, the slow build-up of information and understanding is setting the stage for a dramatic advance. “There will be a crack in the code, followed by rapid solutions,” he told Alzforum. “It is reasonable to expect that in five years we will be close to, or have already experienced, this quantum leap. Hopefully just in time for our 2025 goal.” The World Dementia Coucil published a new report titled "Defeating dementia: the road to 2025" and, on December 19, a summary of its Summit 2018.—Gwyneth Dickey Zakaib

World Dementia Council Takes Stock of Progress, Challenges

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