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

“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.

Researchers from across Europe team up to decode the interplay between genetics and environment

For scientists studying the origins and pathways of Alzheimer’s disease, experimental animal and cell models are a critical tool. These models mimic the processes thought to be at play in human patients and allow researchers to assess possible treatments before moving into clinical trials. Yet most models of Alzheimer’s disease are unable to take into account the complex genetic and environmental factors involved in what’s known as late-onset ‘sporadic’ Alzheimer’s disease, which is the most common type of the disease.

An international research collaboration called DACAPO-AD is trying to change this. Led by Gabor Petzold, a professor at the German Center for Neurodegenerative Diseases (DZNE), DACAPO-AD (short for ‘Deciphering Interactions of Acquired Risk Factors and ApoE-mediated Pathways in Alzheimer’s Disease’), aims to elucidate the complex interactions between known genetic and environmental risk factors, with the goal of establishing the reliable new models of Alzheimer’s disease that scientists need to identify potential treatments.

At the intersection of genetics and environment
Researchers classify Alzheimer’s disease in different groups according to the age at onset. Early-onset inherited (or ‘familial’) Alzheimer’s disease is very rare, but half of the cases have a genetic cause that is relatively well understood. Then there’s what is known as late-onset sporadic Alzheimer’s disease. This type is far more common — accounting for more than 98% of cases — but the pathways leading to sporadic Alzheimer’s disease are much less well understood and look far more complex. The most important known genetic risk factor for sporadic Alzheimer’s disease is a gene called APOE-ε4, although not everyone with sporadic Alzheimer’s disease carries the gene, and some people who do carry the APOE-ε4 gene ultimately die without ever developing Alzheimer’s disease. Indeed, around a third of sporadic Alzheimer’s patients are APOE-ε4 -negative.

For the DACAPO-AD project, the challenge is to better understand the reasons for this heterogeneity, and the researchers are focusing on the role of environmental (or ‘acquired’) risk factors. They’re trying to uncover how a range of these different factors  — such as a high-fat diet, cardiovascular disease, traumatic brain injury, systemic inflammation and sleep problems — interact with the APOE-ε4 gene to result in an increased risk of Alzheimer’s disease. “It would be a real breakthrough in the field if we could understand, on a cellular or molecular level, how these risk factors trigger the onset and contribute to the progression of sporadic Alzheimer’s disease,” Petzold explained from his lab in Bonn, Germany. “Our hope is that this research will ultimately lead to better preventive strategies and novel treatment options.”

Pooling resources to speed up discovery
The high-level skills and technologies needed to approach these questions meant that international collaboration was not just beneficial but necessary. DACAPO-AD, which was selected for support in the 2015 JPco-fuND call, brings together research teams from four countries: in addition to Germany, researchers in Denmark, France and Sweden are bringing different expertise to the project. “We are a team of five labs from four different countries that are sharing technologies and data to more rapidly address the same common goals,” Petzold said.
The project partners were selectively identified to ensure that the combination of each lab’s unique skill set would enable the collaborators to work on questions that the individual labs wouldn’t have been able to take on alone. Moreover, all of the partners have agreed to share preliminary findings and technological developments freely within the team, with one of the consortium’s explicit goals being knowledge transfer. “We will give young researchers from each lab the possibility to travel to partner labs, Petzold explained. “This will allow our teams to learn new techniques, exchange data and get to know other researchers.”

Calling young researchers!
The Alzheimer’s field is quickly evolving and offers scientists and clinicians a host of exciting challenges. To early-career researchers who are considering specializing in Alzheimer’s disease, Petzold recommends surveying a broad range of researchers, including PIs and postdocs as well as students, to see what they think the most pressing questions are facing the field and where it’s headed. “In other words,” he explained, “what novel research finding would be a real breakthrough, and how do we get there?” He advises joining a lab with a hands-on PI who has the technological and financial resources to tackle these big questions. From there, a mix of perseverance and openness, he says, is most likely to yield success: “It’s important be diligent and work hard, but also to stay flexible for new research avenues and technologies that may emerge in the future.”

“I would be a bit sad if JPND only focused on projects with 3-5 countries involved. In these projects the researchers continue in the same way as they did before, and they do not experience these cultural influences from different specialists and you would not get this circular effect that can spread around to all the countries. So I say to JPND that you should support projects that involve as many of the participating countries as possible.”

What impact do you think JPND is having?
At the start I was not so sure about JPND because I felt it was more of a top-down idea where it is decided more-or-less from the Management Board what areas should be focused on, with the input of the Scientific Advisory Board. I was afraid that the research councils and funding organisations in each country would reduce their interest. Now, I can only give the example from my own country, Sweden, but I can say that they have been extremely positive to JPND, and they have put in extra funds, in addition to the support that already existed. This extra addition of funding is due to JPND, and I am sure that this is the case in most other countries. Globally, I think there is growing interest worldwide in JPND – we can see the collaborations starting with Canada, with interest also now coming from Asia and America.

What do you think are the most pressing issue in this area of research?
This is a field that is really evolving. From a societal perspective, disorders like Alzheimer’s, Parkinson’s and Vascular dementia are very common and are a high cost to society. That means in the future, with aging populations, greater efforts are required to stimulate research, and to simulate clinical work with these patients. Due to the increasing demand, and increasing age of populations, if we don’t do anything in research, there will be a collapse of our healthcare systems. So we need to focus not only on diagnostic processes, but we need to also develop new pharmacological treatment strategies for these patients.

What is the general feeling you get from researchers in this field?
There are different views from different categories of people. If you look from the GP/Doctor perspective, I can see that GPs are rather nihilistic. They have not yet seen any great success from the new drugs that are really the first-generation of pharmacological treatments in this area, so they may be a bit negative. However, from a society perspective we are forming teams of carers for community care. With more research these teams are really increasing their knowledge, and that gives back very positive feelings. From the specialist clinicians I think it is noticed that Nobel prizes are regularly given out in this field (e.g. prion-like properties, signalling systems in the brain, MRI and PET, new microscopes to study the interaction of neurons + chemical substances in the brain). It is a fascinating research area, and an area that is more and more recognised.

What would your advice be to younger researchers?
For young people who want to come into research, the brain is fascinating. The explosion in molecular biology, cell biology, genetic findings combined with the technological advancements seen now with MRI, functional imaging, positron emission tomography are very exciting for brain research. So even if we are not solving the ultimate question in the short term, we will see great progress through these new technologies coming into this field. I really want to combine fundamental knowledge about the diseases with technology and biochemical research, and to also give young people future possibilities not only for a clinical or academic career, but also to work with industry in the future. It is not only important for them but also for Europe. Europe has many strengths – we have good clinical work, good pre-clinical work, but have lost part of the industry. If we could really integrate these three, we would play a stronger part in developing new drugs and developing ideas within Europe.

Click here to read Bengt Winblad’s biography.


“The challenge is global, so the action must be global – yours and mine!”

What is the general perception of JPND in Slovenia?
Of the many initiatives of which I am aware, JPND is probably the most well-perceived and, from the organisational point-of-view, the most advanced. The idea of JPND is very nicely perceived within both the political and research spheres, and also from the clinical perspective.  This is probably one of the reasons why, in 2015, Slovenia is hosting three major events associated with Dementia –  Alzheimer Europe, the European Alzheimer’s Disease Consortium, and a Vascular Dementia conference – all of these events were somehow facilitated by JPND being part of the new Slovenian philosophy on neurodegeneration.

How are Slovenian researchers performing in JPND initiatives?
Slovenian researchers were part of the first call (2011) – where we participated in two consortia – BIOMARKAPD and DEMTEST, and both of these have facilitated networking and increased the level of standards among Slovenian scientists.  It is interesting that although the recent recession has reduced the amount of money available for research, the researchers themselves wrote a letter to the Ministry asking them to support the JPND initiatives.

Are there initiatives in Slovenia for supporting researchers willing to apply for JPND funding?
There were very energetic initiatives when JPND was established and when the first call was launched in 2011.  However, due to the recent recession and global financial crisis, this support has been more verbal than actual. However, the Directorate for Science at the Ministry of Education, Science and Sport is striving to get funding for the JPND calls in 2016. It is also very good that recently the Ministry of Health expressed an interest in JPND, particularly in more clinically-oriented studies and also in palliative care, so we have now their verbal promise that they will join the boat.

What do you think is the main benefit for your country for participating in JPND?
For Slovenia, as a small country of 2 million people, the consequences of the first call were very, very great for Slovenia.  It not only advanced our neuroscience but, importantly, it allowed us to conduct extensive networking at the time of the first call.  Probably JPND is the reason why we are one of the rare successful countries to apply for the TEAMING project, and we are in the first phase. We are also more successful in applying for international calls – one of our successes is a project in which, together with Norwegian   colleagues, we are trying to establish a dementia-friendly city in one of the smaller cities – Telja.  Additionally, through the JPND     initiative to identify young leaders or ambassadors of dementia, we founded a group of several of them and in fact two of them had a very active role in the G7 London JPND meeting and also the WHO  Ministerial meeting in Geneva.

And your Ministry? Are there benefits to being a member of the JPND Management Board?
Certainly. As a rather small, newly-emerged country, it is very important for our scientists as well as our politicians to make the right priorities, based on the right values.  Being a part of a larger group of scientists as well as politicians certainly helps that we are making the right choices.  So being part of the MB of JPND is very important, particularly because of its philosophy, as scientist/clinicians are forced to sit with their colleagues from the Ministry, so the decision is logical and economically sound.

“Engage now and fully, because JPND is addressing the challenges of your society, which are growing exponentially! And it is even providing some solutions already!”

What do you think is the main benefit for your country in participating in JPND?
The benefits are multifold. Our participation in JPND is stimulating the Ministry of Health to finally develop a National Plan for addressing Neurodegenerative Diseases. Slovenian researchers are also focusing on this area and follow the funding calls. The JPND Strategic Research Agenda is a kind of “lighthouse” for Slovenian policymakers in diverse Ministries and Research Performing Organisations. In addition, an informal group of the “Young Leaders for Promotion of Dementia-related issues” is being created, which is influenced by JPND efforts in this area. Alzheimer Europe also held its regular meeting in Slovenia in 2015. A project proposal for a “Teaming” call has been successful in the first phase, also due to the important research component on dementia.

And your Ministry? Are there benefits to being a member of the JPND Management Board?
Yes, certainly, for the same reasons. JPND efficiently addresses the problems that are already very serious in our country and will be even more dramatic in the future. Therefore we have to prepare adequately and quickly for these new challenges ahead. We are trying to stimulate our Ministry of Health and other Ministries to more actively organize themselves towards creating effective solutions for the increasing problems deriving from the challenge of dementia. Participation in the MB of JPND supplies us with information and understanding of the complexity of the phenomenon.

What is the general perception of JPND in Slovenia?
JPND is relatively well-known and appreciated among the following stakeholders in Slovenia: ND field researchers as well as some clinicians and diagnosticians; policymakers at the Ministry of Education, Science and Sport and the Ministry for Health; Young Research Leaders who are promoting the campaign against dementia; Slovenian Members of the European Parliament; Civil society organisations dealing with this phenomenon (e.g. “Spominčica”).

How are Slovenian researchers performing in JPND initiatives?
So far they have participated only in the first call – harmonisation of biomarkers. Two Slovenian research groups were successful in this call, which was an excellent result for a small country like Slovenia. Unfortunately, due to cuts in the National State budget, we have not been able to participate in more calls so far.

Are there initiatives in Slovenia for supporting researchers who wish to apply for JPND funding?
At the moment there exists only the strivings of the Directorate for Science at the Ministry of Education, Science and Sport for funding to be reserved in the 2016 National State budget for participation in the planned JPND calls for that year.

“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.

“Behavioural problems are the key issues for people with dementia and for carers, and we have to focus on how we can improve the situation for them. I am also interested in the plasticity of the brain and how we can collaborate in order to improve the social function of people with dementia.”

“What we have found so far is that each approach should be person-centred and not standardized and the hopeful thing for governments is that psychosocial interventions prove to be cost-effective if they succeed in being effective.”

What area of research gets you particularly excited?
Dementia research has been getting me excited for many years because it is about solving the secrets of life, and in particular the secrets of the brain. Because there are so many disciplines involved in dementia research, I would be fascinated to know what would happen if we put all our knowledge together, and really try to address the full picture and full puzzle of dementia. I am very hopeful that something new will come up soon.

What do you think is the most pressing issue in this area of research?
The most pressing problem is the behavioural problems of people with dementia. These problems are very annoying for the people themselves, and for the families and care givers and it is very hard to deal with it. I think research has to do a better job at trying to deal with these problems and this also endangers the social health of people with dementia. I would like to create a new theme within JPND of “social health” in dementia.

What would be your advice for early career researchers?
It is very important for researchers to be curious. Although you have to follow the research protocols and guidelines, be curious, and follow your curiosity to new questions. It can be hard and your bright ideas will be rejected, but just continue to think harder. As a woman at a relatively high level in research, “keep going for it” is my main advice. I had to struggle to come into this male-dominated world of research – I am the only woman in the Scientific Advisory Board for example. But you can do it, and when you are in, it is more fun than trouble, but take your chances and go for it!

How can health and social care research be better supported in JPND?
The obvious answer is by funding research proposals and also by providing guidance in the research agenda, so that researchers know where to focus, and they don’t come up with haphazard initiatives but initiatives embedded in a stream of correlated research. For instance, if you take social health, we can build on existing theoretical knowledge in social health.

What is the main benefit of JPND for patients and patient organisations?
Research is relevant for patients as they are the first to benefit from it. Some research is for today’s patient and much research is for the patient of tomorrow but nonetheless, we are doing it for the patients themselves. We do have good connections with patient organisations in Europe and in the national countries. And they are in some ways involved in JPND for research initiatives.

What impact do you think JPND is having?
We should not underestimate JPND’s influence. It is not only about the European Research Agenda, which is tremendously important, but also that all disciplines are involved. We have to take the next step to integrate it at the national level, as it also influences the national research agendas. On a global scale, there is not a comparable initiative. I think JPND is very, very important.

Click here to read Myrra Vernooij-Dassen’s biography.


“From my own perspective, participating in JPND projects has been a very good experience. You meet different people from different disciplines, you learn how to do things differently, you get different perspectives on things, and I think that enriches the field.”

What impact do you think JPND is having?
I think JPND is having a fairly significant impact. The profile of JPND-sponsored programmes has increased significantly in recent years.  Researchers are now very aware of the benefits that synergies created through JPND-supported multi-national research brings. This has made researchers very motivated to participate in JPND-supported calls. I believe that this transnational synergistic approach to research is the right one. JPND has identified that by tackling the big challenges in the field of neurodegenerative disorders in a coordinated manner, the impact of research outputs can be maximised.

JPND has also succeeded in bringing researchers into the field of neurodegenerative disease research who might otherwise have found it difficult to break into areas beyond their own expertise. I am currently collaborating with a group of exercise physiologists on a JPND project that examines the benefits of exercise intervention for people with cognitive impairment. I think that this type of collaborative approach is a great opportunity for us going forward to refresh the field and expand its boundaries while facilitating the growth and exchange of interdisciplinary knowledge.

What is your experience of JPND-supported projects?
What I really like about multi-national projects, such as the JPND ones I’m involved in, is the added value they afford our research. Ireland’s population base does not allow us access to a large number of patients compared to other research groups in Europe, but by working with them, everyone benefits from what we can adopt from each other’s experiences, exploit in terms of resources and learn from new perspectives.

Do you have any general aspirations for this field of research?
Human capital development is very important right now in the field of neurodegenerative disease research, and no less so in dementia research, which I have a particular interest in. At the moment the approach to research is siloed, with basic scientists, clinicians, service providers and policy makers often working independently from one another. This approach needs changing so that the neuroscience research we are doing is rapidly translated into clinical fields and then into policy and practice. The only way to achieve this is through human capital, by educating people from all these areas together – that’s the future and it is so important.

There are a number of initiatives that we are working on in Ireland to achieve consensus and address the siloed approach to research. The next step will be to create human capital-type programmes that are integrated, applied and inter-disciplinary. Even in the event of the development of a very effective disease-modifying treatment for Alzheimer’s disease, patients will still require quality care and informed clinical practice – all this is only achievable with sympathetic, well-considered policy implementation.

We need to get the best value we can from existing resources and we can do that by doing really good quality research. I think JPND is contributing by trying to meet the big economic challenge, as well as the clinical and biological challenges.”

What impact do you think JPND is having?
I think it is having a big impact as a focal point. I think it has managed to bring together discussions and thinking around this set of conditions, and the research that is needed to tackle them.  I think it has helped to generate more funding for this endeavor, too.  I think it has also helped to bring together researchers to communicate what they are doing.  So lots and lots of ways: I’m very positive about it. I came in as a social scientist into what is an area dominated by biomedical science, but am very positive about what JPND is doing in my area of Health and Social Research.

Did you always want to work in the area of health and social care research?
I started off doing a Masters degree in Econometrics and Mathematical Economics, which I loved intellectually, but I got bored with doing something that felt too removed from the real world.  I have always worked in Health and Social Care Research, and I absolutely love it. And I particularly like the dementia field, as I think it brings enormous intellectual challenges. I have a parent with dementia – indeed, almost everyone knows someone with dementia, so it’s a real-world problem today, and I like working in an area that is that challenging.

What is the best piece of advice you have received in your own career?
I’ve been very fortunate to work with people who are strong on the science of research and I hugely value that. I have also been very fortunate in my job to work with people whose main priorities are changing policy or putting policy into practice, and they constantly remind me that university-based researchers need to be aware that there is a real world out there, and we need to be serving that real world – so it is about balancing the scientific robustness with what we can do for today’s populations.
And what would your advice be to younger researchers?
My advice would be “come into this field and stay in it”.  This is an interesting field partly because there are no simple solutions.  There are huge challenges, so from that point of view, it is very good.  It is important that researchers keep a broad profile and that they look to do good, solid scientific research.  In my field, I would want them to do research that will have an impact on the real world and to do that quite quickly, so that’s again balancing the robustness of science with the relevance to today’s challenges.

How can we better involve patients in research?
As a research community, we have not involved patients enough, and I think we’ve just assumed that they are not able to participate – that’s clearly not the case.  We need to understand what they see as important, both in the short- and long-term. They are not the only people whose views need to be taken into account, but we need to include them more in research, in terms of how we plan it and how we interpret it. Doing so will generate better value for our research.

Click here to read Martin Knapp’s biography.