Limburg Alzheimer’s Centre: Decades of work on dementia
Many people still equate a diagnosis of dementia with being admitted to a nursing home and not recognising your own family. But with dementia it is still possible, especially in the first few years, to have a meaningful life. For the last 20 years, the Limburg Alzheimer’s Centre (ACL) has dedicated itself to improving the lives of people with dementia and their loved ones in many ways. On the occasion of this special anniversary and World Alzheimer's Day, the two ACL directors, Prof. Frans Verhey and Prof. Marjolein de Vugt, take stock. “The solution does not lie in a ‘dementia pill’. We have let go of that idea.”
In addition to the fact that the first Alzheimer's centre in the Netherlands was established in Maastricht 20 years ago, this year also marks the establishment of the first memory clinic in the Netherlands, at the Maastricht hospital 35 years ago. At both of these places, scientific research and healthcare innovation go hand in hand. The ACL also runs community projects to inform the general public as well as to break the taboo against dementia. Alzheimer’s is the most common type of dementia, hence the centre’s name, but the Limburg Alzheimer’s Centre devotes its attention to other forms of dementia as well.
What has happened in Maastricht over the last 20 years when it comes to dementia research and care?
Frans Verhey: “A lot. To start with, 70 researchers have received their PhDs within ACL on some aspect of dementia. That means an enormous increase in knowledge about the condition, as well as an investment in future scientific researchers in this field.”
Marjolein de Vugt: “In addition, we have raised awareness of dementia, focussing less on the individual and the condition, and more on the societal level. We think that understanding what happens on the brain level with dementia is very important, but it needs to go hand in hand with a broader view of what living with dementia entails.”
There has been a lot of media attention surrounding the proteins in the brain that are said to be key to treating dementia.
Verhey: “True, but ‘the pill’ has not yet delivered and I don’t think that will happen anytime soon. We see that as too narrow a view of the condition. Moreover, a lot is involved in a diagnosis of dementia, so we think it’s important to draw attention to the informal caregivers, as well as to how it’s viewed by society.”
De Vugt: “There have been all kinds of campaigns, which we have also invested in, to raise awareness in society. It can affect anyone. How can you recognise it and take it into account? Having more time and support when you go shopping or to a museum, for example, makes a big difference.”
Has there not been any progress at all medically?
Verhey: “We can now better predict at an early stage of Alzheimer’s how a person’s condition will progress, based on certain substances in the brain called biomarkers. But we have also achieved a great deal for patients and their families, for example, with our Partner in Balance programme.”
De Vugt: “This is an e-health programme that people can follow online and that helps informal caregivers with practical problems in daily life. Scientific research has shown that it really helps partners to maintain a better balance after the diagnosis and also that a trained coach is important in supporting people. So, this is how we offer it now. And we are trying to expand the programme in the Netherlands. Other research has shown that the better the partner can adapt to the new situation, the calmer the patient is, which in turn has a positive effect on the entire home situation. This type of e-health application is where our added value lies.”
Maastricht UMC+ places a strong emphasis on prevention. Can you do something yourself to prevent dementia?
De Vugt: “The general lifestyle advice of healthy eating and exercise applies here, but as far as dementia is concerned, staying curious is very important. Working on Sudoku puzzles or learning something new is good, but so is maintaining social contacts. That also challenges your brain to remain active.”
What do you hope to improve in this field over the next 20 years?
Verhey: “At the moment, there are 290,000 people in the Netherlands who are diagnosed with dementia and that could increase to 420,000 over the next 20 years. Hopefully, the numbers will end up being more favourable thanks to a greater focus on a healthy lifestyle. But I hope that in 20 years’ time, dementia will be recognised at an earlier stage, that we will be able to treat some aspects of it differently and that people will receive the care they need earlier on in the process.”
De Vugt: “This is not the case now, partly because dementia is still taboo. People are ashamed, don't want to accept it or don't want to accept help—though the latter is particularly important to prevent informal caregivers from becoming overburdened. There is still a negative image of dementia, even though it is very manageable to live with, especially in the first few years, if the circumstances are optimal. And we do everything in our power to help with that, together with the patient and their loved ones.”
Text: Femke Kools
Translation: Casey O'Dell
Photography: Alf Mertens fotografie (i.o.v. MUMC+)