Neuroscientists on tour: 'Many people with MS do not link their cognitive symptoms to the disease'
In the MS Cognitietour, psychologists and neuroscientists from Leiden University discuss the latest scientific knowledge with MS patients and their loved ones. This leads to insights: 'One lady told how much stress she felt from all those caregivers around her bed.'
Some 60 people with MS gathered at MS treatment centre Nieuw Unicum in Zandvoort in early January during the first edition of the MS Cognitietour. The afternoon was led by researchers Hanneke Hulst, Marit Ruitenberg, Maureen van Dam, Sabina van der Veen and master students from the Clinical Neuropsychology specialisation. The theme of the afternoon: cognitive problems in MS.
Ten-minute consultation
Hanneke Hulst, initiator of the tour, has been researching the subject for 15 years and sees how underexposed it is.
'Little time is left in a consultation to ask about cognitive functions'
'For people with MS, the neurologist or nurse is the first point of contact, besides the GP. But the GP has on average one or two MS patients in the practice, that knowledge about the disease is limited. And the neurologist is mainly concerned with stopping inflammation in the brain with medication and the visible symptoms people with MS experience. In a 10-minute consultation, patients often discuss physical symptoms, little time is left to ask about cognitive functions.'
Prime of their lives
While the consequences of cognitive complaints, such as forgetfulness and difficulty concentrating, are often profound. Take at work, for example. Hulst: 'People with MS are often between twenty and forty years old at diagnosis, and on average 50% of them are declared fully or partially disabled after five years. They are in the prime of their lives and then can no longer do what they were used to. Many people do not link their cognitive symptoms to their illness. "I just had a busy period at work", or: "I have three young children, so it's logical that it's all not working out for a while".
In addition, doctors also sometimes find the subject difficult to raise because there is still relatively little that can be done about it. There is no pill that makes those symptoms go away. That is why it is extra important to make it openly discussed and to reduce the symptoms in other ways'.
About the MS Cognitietour 2.0
From Groningen to South Limburg: in twenty weekends and evenings in 2024, researchers from the MindS lab and MS centre Amsterdam will cross the whole of the Netherlands. The aim of the tour is to bring science and practice closer together, and to further develop knowledge about this disease together with people with MS. The tour is a follow-up to the 2018 MS Cognition Tour, organised by Hanneke Hulst and Menno Schoonheim. Wondering when the researchers will be in your area? Check out the upcoming editions of the MS Cognitietour.
Well-read
During the tour, the researchers open the doors to this difficult topic with a plenary lecture. Marit Ruitenberg: 'In it, we talk about what cognition actually is, how it can change for people with MS, and how we map it. We give an overview of what we as scientists have learned about this in recent years.'
After the lecture, participants slide into groups at the table with a scientist. There they burn loose with questions. Sabina van der Veen: 'That gave us a good picture of what is on people's minds. What struck me was that many attendees were well versed in the latest scientific developments and really wanted to know how it worked. "How do you work together internationally? Is the result of your research used again by others?" There were also substantive questions after the presentation, for example on brain plasticity: "Does cognitive training cause more detours in your brain?"'
New insights
For the researchers, those conversations also lead to new knowledge, or revival of existing insights. Hulst: 'One participant herself lived in Nieuw Unicum, meaning she received a lot of intensive care.
'The fact that MS slows everything down sometimes also causes reluctance and frustration in the environment'
She explained that she experienced a lot of stress from all those caregivers around her bed, and that this made her less able to articulate what she needed. This made everything go slower, sometimes causing unwillingness and frustration in those around her. That was a trigger for me: it's not just about what you can and cannot do physically or cognitively, but also how your surroundings, such as your loved one or caregivers, deal with the disease.'
Research agenda
In 2024, the team of researchers will visit 19 more places in the Netherlands. 'Every edition there is an idea box, where participants write on a note what they would like to have scientifically researched. We will elaborate these at the end of the year, as well as the main insights we have picked up from the personal conversations,' Hulst says. 'That way, a kind of research agenda for the MS community will emerge from this tour.'
New knowledge about MS
Recently, MindS lab researchers published two new papers on the timely detection of cognitive symptoms in MS.
- Waskowiak, P.T., de Jong, B.A., Uitdehaag, B.M.J. et al. (2024). Don’t be late! Timely identification of cognitive impairment in people with multiple sclerosis: a study protocol. BMC Neurology,24: 26.
- Aarts, J., Saddal, S.R.D., Bosmans, J.E. et al. (2024). Don’t be late! Postponing cognitive decline and preventing early unemployment in people with multiple sclerosis: a study protocol. BMC Neurology, 24: 28.