World Young Leaders in Dementia (WYLD), a network for emerging leaders in the field, grew out of the legacy meetings that followed the 2013 G8 (now G7) dementia summit: Together with JPND, the UK Science & Innovation Network identified young leaders to convene to draft a set of proposals and present them at the WHO’s First Ministerial Conference on Global Action Against Dementia in March 2015. This process sparked a number of new research collaborations and indeed the creation of the WYLD network itself.

Now with more than 130 members across six continents, WYLD is mobilising to drive forward creative new solutions for people with dementia, their caregivers, and their communities. JPND spoke with Laura Booi, William Hu, Anja Leist, Kristine Newman, and Clare Walton from the WYLD Steering Committee to learn more about what the group wants to accomplish and how they plan to do it.

Accelerating solutions to tackle dementia
To help lay the groundwork for the future of dementia care, cure, research, and advocacy, the members of WYLD are working to foster new, interdisciplinary collaborations among the next generation of leaders. “WYLD members come from the broad fields of basic, clinical, health, social and care,” said Anja Leist, a research associate at the PEARL Institute for Research on Socio-Economic Inequality at the University of Luxembourg. “Most members, however, are not only researchers,” added Kristine Newman, an assistant professor at the Daphne Cockwell School of Nursing at Ryerson University. “They’re also advocates and, in many cases, care providers.”

The young leaders aim to identify ethical and daring models of inquiry and then translate them across disciplinary and national borders. Their end goal: to advance new dementia strategies that incorporate the latest innovations in technology and methods and that are global in scope. “We want to develop compelling strategies that meet the needs of a rapidly changing world,” said William Hu, Assistant Professor of Neurology and Director of the Neurodegenerative Biomarkers Laboratory at Emory University. “Dementia is a global challenge and it will require global solutions.” Hu himself has promoted scientific exchange by establishing new collaborations with young clinicians and scientists from Bulgaria, Italy, the Netherlands, Taiwan, and the U.S.

European young leaders meeting, London, February 2015

European young leaders meeting, London, February 2015

A new take from the ‘Think different’ generation
According to the young leaders, many of whom qualify as so-called millennials (those born roughly between the years 1982-2000), theirs is a generation marked by a rejection of conformity and a confidence in thinking outside the box. It’s this ethos that the young leaders say allows them to bring creative brainstorming, fresh perspectives, and novel solutions to the dementia field. In short: this is a group of young people who aren’t afraid to put forward challenging new ideas.

First WHO Ministerial Conference on Global Action Against Dementia, Geneva, March 2015

First WHO Ministerial Conference on Global Action Against Dementia, Geneva, March 2015

As the first generation of dementia researchers who grew up with home computers, the young leaders also bring technological fluency to the field. One advantage of being a digital native, they say, is that they’re able to utilise, uncover, and recommend the most advanced tools, trends, and technologies, such as content management systems and social media, for dementia-related initiatives. For this reason, WYLD incorporates a technology and dementia element into each international workshop.

Ready, set, assume the mantle
WYLD’s ongoing activities include regular meetings at international dementia conferences and participation in the World Dementia Council, with one young leader contributing to each of the five Global Teams (Research, Open Science & Data, Care, Integrated Development, Risk Reduction, and Finance). In order to develop into a truly international network, the young leaders are taking steps to implement their governance structures, formalise their communication channels and create a membership directory to facilitate connecting from both within and outside of the network. “We want to rapidly ramp up our collaborations,” said Laura Booi, Doctoral Candidate in Gerontology at Simon Fraser University in Vancouver, Canada. “That’s how we believe that we can most quickly make progress toward a world that cares for and values people with dementia.”

Japanese young leaders meeting, Tokyo, November 2014

Japanese young leaders meeting, Tokyo, November 2014

Dr. Brit Mollenhauer of Paracelsus-Elena-Klinik was a researcher in BIOMARKAPD, a JPND project on biomarkers for Alzheimer’s disease and Parkinson’s disease that ran from 2012-2015.

In an interview with JPND, she reflects on the project and discusses the importance of biomarkers for research into Parkinson’s disease:



“JPND is a clear window of opportunity to participate in an exercise to do global research to address neurodegeneration. Of course, it is up to the participating countries to shape this issue in a better fashion. We are now jumping from not just being a European but a global player, and this is a good opportunity for Europe to translate the knowledge into better clinical practice and better economies in Europe.”  

What is the general perception of JPND in Spain?
It is rather positive – maybe JPND is ‘half-way’ there to ultimate success, as there are still questions pending. One is the alignment of national and EU programmes, and the second is better participation of industry in performing neurodegenerative disease research. The third is more and better research and transfer of knowledge in health and social services. But overall there is a positive approach to JPND.

How are Spanish researchers performing in JPND initiatives?
Our perception is that they are doing rather well if you take into account the level of commitment of research funds, the relative size of our research community in neurodegenerative diseases, and the relevance of the call topics to date, some of which are better suited to our researchers than others.

Are there initiatives in Spain for supporting researchers willing to apply for JPND funding?
Although there are no specific initiatives assigned to JPND, there are more general initiatives that can serve the purpose of fostering participation of Spanish researchers in JPND. For example, the CIBER virtual research centers and the Health Research Institutes, certified according to RD 339/2004, receive funds that enable them to foster this type of participation.

What do you think is the main benefit for your country for participating in JPND?
The main benefits come from putting together Spanish researchers and the Ministerial research capacities and to linking to and engaging with the research capacities in the other countries participating in JPND. This is what makes the difference!

And the ISCIII? Are there benefits to being a member of the JPND Management Board?
From the ISCIII perspective, there are benefits because ISCIII is entitled to shape and fund National Health System research capacities in Spain. It is also a good window of opportunity to form a bridge between JPND and the national programmes, and also the Programme Committee delegates in Horizon 2020 in the different EU societal challenges.

By analyzing brainstem tissue and testing their findings in ongoing aging cohorts, EPI-AD, a JPND-supported project run by a young PI from the Netherlands, aims to uncover the stress-related epigenetic mechanisms linked to Alzheimer’s disease.

A few years ago, Daniel van den Hove, a neurobiologist who has long been interested in studying the connections between stress and brain function, began to think about a new question: what if stress associated with disorders such as anxiety and depression was causally linked to Alzheimer’s disease?

“We already have some evidence that a history of depression may speed up cognitive decline related to Alzheimer’s disease,” van den Hove explained from his office at Maastricht University in the Netherlands, where he is an Assistant Professor in the Department of Neuroscience. “What we want to do now is to look at the brainstem, where the regions critically involved in stress regulation and affected by depression are also affected early in Alzheimer’s disease, and see if we find any causality.”

This is the question that van den Hove and his colleagues from across Europe will explore in a new project supported by the EU Joint Programme for Neurodegenerative Disease Research (JPND). The consortium, called EPI-AD (short for “Targeting epigenetic dysregulation in the brainstem in Alzheimer’s disease”), brings together research teams from five countries: in addition to the Netherlands, researchers from Germany, Luxembourg, Spain, and the United Kingdom will collaborate on EPI-AD. The project was selected for support under the 2015 JPco-fuND call, which was co-funded with the European Commission under Horizon2020.

Zeroing in on the brainstem

Although EPI-AD won’t officially launch until July 2016, the research teams have spent the last several months planning via email, and they held their first face-to-face meeting in March. “I think we’re all really excited to get started on this project, which we believe represents an important shift in research focus,” van den Hove says. Although much of Alzheimer’s disease research is currently concentrated on brain regions like the hippocampus, which is affected in the later stages of the disease, van den Hove and his colleagues are looking somewhere else: the brainstem. “We suspect that the changes seen in the hippocampus are more likely to be the consequence of what’s already happened than causally involved,” van den Hove explains. “We want to shift our focus to the earlier stages — we’re looking for causal factors — and we think the best places to look are the the locus coeruleus and the dorsal raphe nucleus in the brainstem, which is where these early changes are seen.”

EPI-AD researchers will have a rich collection of tools at their disposal, starting with unique, well-defined brain tissue samples for patients and controls. The samples are banked an average of 2.8 hours postmortem, and subjects were followed for eight years on average, offering the researchers a trove of valuable new information. In addition, they’ll have access to three ongoing aging cohorts in the Netherlands and Germany, which will allow the researchers to immediately test what they find in the brain to see whether it has any predictive value in living subjects. In parallel, they will be able to directly compare their findings with other biomarkers – they’ll have access to imaging data and amyloid beta and tau as well as cognitive data – resulting in a multi-level and multi-disciplinary project. Finally, the Spanish partner, led by Manel Esteller and Raul Delgado at the Bellvitge Biomedical Research Institute, will manipulate the identified genes in stem cells of Alzheimer’s disease patients to see if they’re changed in terms of structure and function. The key question: Can these cells be made ‘healthier’ by intervening in epigenetic processes? “We’re combining a lot of recently developed knowledge in different fields and integrating it into one concept,” van den Hove says. “But what’s the use of finding something very interesting and then stopping there? Our goal is to uncover critical findings and then find a way to add value by translating this new knowledge as efficiently as possible to the clinic.”

If at first you don’t succeed, try, try again

Dr. Daniel van den Hove

Dr. Daniel van den Hove

For van den Hove, the path to the JPND grant wasn’t necessarily quick or easy. “When I came up with this hypothesis I was incredibly enthusiastic — I thought that this might mean something, that I could really make a difference, even in a relatively short period of time,” he explained. But his first grant application was turned down. Then another one was declined, although the scientific excellence of the project proposal was underscored by all of the reviewers. One of his mentors, Professor Klaus-Peter Lesch, urged him to be persistent. “Fail better next time,” he kept telling him. “When I saw the JPND grant opportunity, we’d already been fine-tuning this concept, working on extending our network a little more and thinking about the most interesting angles, so we were ready to apply,” he said. Ultimately, the researchers’ persistence paid off.  “It’s important to keep believing in your ideas and never give up,” van den Hove says. “It’s also important as a young researcher to find mentors who will assist you in navigating the grant application process and who will help you seize new opportunities. At 37, I’m still relatively young to coordinate such a large project, but I’m lucky in that my mentors encouraged me to step forward and apply for this grant. My mentors’ support, on matters small and large, has helped me enormously, and I hope I can now more and more fulfill such a supportive mentoring role. Of course, science, in all its aspects, should never be seen as an individual effort, although many funding schemes are aimed at the individual.”

Joining forces to accelerate research progress    
Research collaborations that developed as EPI-AD came together have been amplified and extended since the project was selected for the JPND grant, with the partners securing funding from other outside sources to hire additional students to work on the project. “What’s wonderful about getting this grant is not just the money the grant brings in but the extra opportunities it brings along with it,” van den Hove says, explaining that over the lifecycle of the project he and his partners hope to apply for more funding and continue to expand their research collaboration. “Since a single lab can’t be experts in everything, international collaboration helps us bring together the broad range of expertise we need to make real strides in this area of research,” he says. “At the same time, as we send students and researchers back and forth between labs, we’re able to bring new knowledge and expertise from one country to another and integrate this new expertise into our own labs as well. So we aren’t just making use of each other’s expertise. We’re also bringing new knowledge back home.”

The project is expected to span three years, but the researchers expect the new information they gather could give them enough material to work with for many more. “EPI-AD gives us the infrastructure we need to generate an enormous quantity of data,” van den Hove says. “What we can do with that in the years to come is almost endless — and incredibly exciting.”


“JPND is a unique European and global platform that has seen remarkable development over the last five years. First, it fills the gaps between policymakers, researchers, practitioners and patients. But even more importantly, it is assuming a primacy in the field of neurodegenerative diseases through its numerous original mechanisms aiming to harmonize and defragment. JPND has become the unavoidable starting point for anyone linked to neurodegenerative diseases in Europe.”

What is the general perception of JPND in Croatia?
When JPND began in 2009, in the minds of Croatian researchers, policymakers and citizens it was recognized as only one of several initiatives dealing with research into brain diseases. However, in the most recent years in particular, JPND has become recognized in Croatia as THE programme with the largest and utmost importance on the European and global levels. Croatian scientists are recognizing the substantial influence of JPND reports and documents in the European research area. They also recognize the shift from the previously dominant funding schemes (e.g. FP7, Horizon2020) towards an increasing importance of the JPND.
How are Croatian researchers performing in JPND initiatives?
Croatian researchers whose research is focused on the human nervous system represent a very vibrant and active community visible in their involvement in many European programs, projects and initiatives. On the other hand, their involvement in JPND is still in a transition phase. This is mostly due to local policymakers, who are invariably lagging behind in recognizing the importance of new models of financing and new models of organizing on the European level. In the last two years alone, the number of enquires about JPND from the Croatian research community has increased several times over.
Are there initiatives in Croatia for supporting researchers who wish to apply for JPND funding?
Currently the Ministry of Health and the Ministry of Science, Education and Sport are trying to find the right model of support for Croatian researchers. As a researcher working mostly in Croatia, I can say that it is no longer under discussion whether Croatia needs to participate in JPND, but rather from which moment it will start to fully contribute to all JPND activities. The number of clinical practitioners and researchers has reached a critical mass for recognizing JPND as the central programme for this large group of diseases. I am sure that Croatia will start to be more actively involved in supporting their researchers as they apply for JPND funding.
What do you think is the main benefit for your country in participating in JPND?
There are at least two levels of benefits for Croatia’s participation in JPND. First, being a rather small country of 4.5 million people, increased international networking is recognized as the best model for success in the biomedical field. Indeed, Croatian researchers dealing with neurodegenerative diseases are very often either partners or coordinators of large European consortia, and JPND offers possibilities that fit perfectly with their needs. Moreover, JPND is useful for Croatian society as it represents an excellent role model in how united action at the EU and global levels can bring about clear, positive outcomes. JPND represents a kind of exercise for small countries and young members of the EU – it helps Croatian society to learn how to benefit from being actively involved in this dynamic and vivid community.