25 years of pioneering in dementia research

“Twenty-five years ago, there was absolutely no focus on preventing dementia. At that time, it became possible to diagnose Alzheimer’s in living patients using cerebrospinal fluid. That gave great hope for the development of a drug that would cure the disease. When that failed to materialise, support grew for a greater focus on prevention. Over the past ten to fifteen years, the importance of this has increased enormously. In 2019, the World Health Organisation (WHO) published its first guideline on this subject, and my group is currently contributing to its revision. Such a guideline brings together all the knowledge on treatments that reduce the risk of dementia and translates it into global practice. Being able to contribute to such a guideline is the crowning achievement of my work. It is also a wonderful recognition of the work here in Maastricht: we are seen as pioneers. And that, in turn, is based on the research of the past 25 years, which has always had one goal: to help people age more healthily.

For that goal, we have, for example, developed a score for the risk factors associated with the development of dementia: the LIBRA score (LIfestyle for BRAin health). This score is used worldwide to inform people about what they can do to reduce their personal risk. With funding from the Province of Limburg, we also developed an awareness campaign in 2018: ‘We are the medicine’. We developed the ‘MijnBreincoach’ app, which allows people to check their LIBRA score themselves and receive advice on how to work on their lifestyle. This campaign has been adopted in nine GGD regions and recognised by the WHO as a model for other countries. The app has now been translated and is available in Luxembourg, with Germany to follow shortly.  

Change begins with awareness: the realisation that you can take action yourself to reduce your risk of dementia. That is why we are working nationwide to find ways of getting this evidence across to the public. In particular, to people who are somewhat removed from this kind of health message, such as those on lower incomes or from migrant backgrounds. You also realise that it is not the most pressing issue for everyone. There are often other concerns besides lifestyle, let alone lifestyle in relation to dementia. There may also be limits to what you can expect from an individual. Ultimately, it is also a societal problem: if you live in an environment where everything encourages unhealthy behaviour, it is very difficult to work on your health.

That is why, in the coming years, we are focusing on a more neighbourhood-based approach: can we work together on brain health, with GPs, schools, local authorities and all the stakeholders in a neighbourhood? And I hope that the government will also take ownership of the problem, so that national campaigns on prevention are launched. In addition to a healthy lifestyle, people can continue to stimulate their brains. Staying curious, learning new things such as a musical instrument or a language, but also having a conversation is a top-level activity, during which the brain creates new connections. The more, the better. I compare it to roads. If you have two roads between A and B and one is blocked, you have to take a bit of a detour, but you still get there. If you only have one road and it’s blocked, you’ve got a problem. So continuing to make those connections throughout your life is very important for better protection against dementia later on.”

“At the outset, we were primarily interested in understanding what life is like for people with dementia and their loved ones. What happens during their interactions? The disease has a significant impact on the environment, and the role imposed on the loved one is a complex one with far-reaching consequences. Research has shown that how the loved one copes with and responds to the person with dementia also appears to influence the well-being of the person with dementia. If you do not fully understand what is happening to the other person, you may sometimes react as you always have, but this no longer goes down well with the person with dementia, leading to arguments, tension or conflict. People also differ in how much support they seek from others, and this partly determines whether you still experience a good quality of life during such a disease process. We have translated this into support programmes through which we can help people. 

In 2011, we launched ‘Partner in Balance’. If, for example, your network seems small, or you think it’s better not to share with others, we explain that openness within your circle ensures you’re not on your own, even when things get tougher. The disease process continues, and we try to teach loved ones the skills to climb the mountains that arise in the right way, so they feel more in control of daily life. Every form of dementia progresses differently, and every loved one is different. Meanwhile, a major study is underway in England to explore how Partner in Balance can be introduced there, so they don’t have to reinvent the wheel. In recent years, we have continued to adapt Partner in Balance to specific target groups. We have also learnt that we need to involve the target groups in this process, which we do through a client panel.

We are currently exploring how we can use technology, such as artificial intelligence, to make support programmes more effective, without necessarily involving a professional. As the number of people with dementia rises, the pressure on the care sector is increasing, so I believe this is the way forward. Not to replace professionals, but to be able to offer something to those on the waiting list as well. We are also looking at how technology can support people with dementia, for example to maintain their day-night rhythm and improve sleep quality. This is so that professional care, and admission to a care home, can be postponed for as long as possible. That is the wish of people with dementia and their loved ones. Another growing area of focus is keeping care accessible to everyone, including people with less education or language proficiency. How do we build a community around older Turkish and Moroccan people? Journalists often ask about ‘the breakthrough of the past 25 years’. I’m not looking for that; I’m looking for small steps that make a difference to individuals, based on the stories of the people themselves. That’s inspiring work to do.”