Multiple sclerosis can affect walking ability and movement, but invisible symptoms such as cognition play at least as big a role and should be monitored through neuropsychological testing and assessed over time. This is because aids and structural modifications can also enable people with a walking impairment to access work and participate in everyday life, but if you can no longer concentrate, understand contexts or follow conversations, it becomes much more difficult to compensate. That’s why today I want to talk about the importance of neuropsychological tests and what exactly they measure, based on my own experiences.
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What is measured in neuropsychological tests and when are they useful?
Neuropsychological tests can be used to measure various aspects of cognitive function and behavior. Their evaluation helps neurologists to better assess the cognitive and emotional functioning of their MS patients and provides a comprehensive overview of a person’s cognitive strengths and weaknesses.
In MS patients, they can help determine the extent and nature of cognitive deficits. At ECTRIMS 2023 in Milan, it was discussed several times that cognitive impairment can occur even in the early stages of the disease.
With a chronic disease such as multiple sclerosis, it is important to first establish a baseline in order to better assess changes over time, or if everything remains stable, this is a further indication that the disease has stagnated and is a great success. If the values deteriorate significantly compared to healthy control subjects, consideration should be given to adjusting the therapy.
Neuropsychological assessments help healthcare professionals develop personalized treatment plans. This may include cognitive rehabilitation or strategies to manage cognitive symptoms.
Neuropsychological testing offers the opportunity to obtain quantifiable data on cognitive function in MS research studies. This data can contribute to a better understanding of the disease and the development of interventions.
What is measured?
These tests usually measure different cognitive areas, including:
- Memory: divided into immediate, short-term and long-term memory.
- Attention and concentration – how well you can concentrate and how long you can sustain attention.
- Executive functions – measuring problem-solving ability, cognitive flexibility and decision-making.
- Language, to assess language comprehension, speech production and fluency
- Visuospatial abilities, assessing visual perception and spatial reasoning.
- Processing speed measures the speed of information processing.
- Mood and emotional behavior allows a statement to be made about emotional well-being and can detect symptoms of depression or anxiety at an early stage.
By assessing these cognitive areas, neuropsychological tests provide a comprehensive picture of a person’s cognitive strengths and areas that may require intervention or support. This information can support medical decisions, treatment plans and strategies to maintain the best possible cognitive function in people with MS.
Reasons for an incomplete neuropsychological assessment
Of course, it may be that only some of the possible areas are examined, as it is always a question of cost and neuropsychology is only slowly gaining in importance.
Why I decided to take a neuropsychological test?
I received my first neuropsychological test as part of my inpatient rehabilitation stay in January 2021. I was very excited because I was already aware of the importance of such tests, but on the one hand there are few trained neuropsychologists and it has not yet been part of standard outpatient care. However, I think it would be good, as the majority of MS patients who retire early do so not because of physical limitations, but because of cognitive limitations.
How I felt about my neuropsychological test?
This first test showed that I have certain limitations with divided attention, i.e. dual tasking. Now it has to be said that my daughter, who was just 3 years old at the time, came along to the rehabilitation treatment and couldn’t be left in the childcare offered there. So she sat in the room with me the whole time and kept quiet, but I kept checking on her, as I think is normal for a mother of a small child.
I was all the more pleased when I was offered a new neuropsychological test for autumn 2023 as part of a study at the MS center in Dresden that was looking after me. And of course I accepted immediately.
I was very excited to see whether the results from the rehab would be confirmed or whether I would do better this time. And I’ll say it right away, everything was completely unremarkable and no deficits have been noticed so far. However, I have also been training my mental abilities very consciously on a regular basis for many years. Sometimes more, sometimes less. In other words, daily for certain periods, then not at all for a few months and then daily again.
Why am I convinced of the benefits of neuropsychological testing?
Maybe you’re thinking to yourself now. Oh dear, I’d rather not know where I stand, because I have the feeling that things aren’t looking so good anymore. In principle, of course, everyone has the right not to know, including you. Nevertheless, I see more chances in the investigation. Because if you are found to have deficits, the problem area can be defined more precisely and therefore suitable training can take place or the aforementioned adjustments to your immunotherapy can be made. Symptomatically, there is the possibility of both targeted training and developing strategies to deal with the cognitive limitations. The better you know your weaknesses, the more specifically you can train, compensate for or openly address them in order to hopefully stay in work longer, prevent misunderstandings and have more fulfilling relationships with other people.
After all, a lack of concentration can also be interpreted by the other person as a lack of interest and lead to great disappointment and a break-up.
And if you have a re-examination, you may also be rewarded with better results. Of course, this depends on the development of your MS and unfortunately there is no guarantee.
My Neuropsychological Testing in Fall 2023
Neuropsychological tests are used to test a wide range of skills, as already mentioned. Before the actual testing began, the neuropsychologist asked me a series of questions about my level of education, my current psychological state and whether I felt that I could no longer cope with certain tasks or already had clearly defined limitations in the cognitive area.
Then the tasks began, which I will explain briefly. The whole thing took about two hours and was deliberately scheduled for the morning because you are usually more alert at that time.
As I had taken my daughter to nursery early and didn’t have enough time to eat, I asked her to have a small snack, which was no problem. Of course, if I had been optimally prepared, I would have arrived at the appointment well-fed, but theory and reality often don’t quite match up. If you have to go to the toilet first, you should say so. You should avoid all unnecessary disruptive factors, such as a cell phone that is set to loud.
Brief overview of the neuropsychological tests
Memory test – number series
Word memorization test
In another test, I was asked to name several nouns in succession and then to repeat as many of them as possible. The reading aloud was completely expressionless, clear and precise. The terms belonged to different categories. In my case, they were types of fish, items of clothing and household items. In a further round, I was told terms that did or did not appear and I had to decide whether they were part of the categories mentioned or additional and therefore not valid. The words were repeated several times and I had to repeat as many as possible after each round. There was also a round where I had to name the sub-terms for the individual categories. And at the very end of the entire neuropsychological test, I was asked again which terms I could still remember.
Task with multiple conditions
There was also a task in which I had to plan a tour of the zoo on a printed form under certain conditions, such as not walking twice and visiting certain animals. There were more conditions, but I can’t remember them all. This tested my planning skills, understanding and planning ability.
Performance Test d2
In this test there are long rows of small d’s and p’s on a sheet of paper with lines above and below them. There can be one to four lines per letter and you only have to mark the d’s with two lines. It doesn’t matter whether there are two lines above or below or one line above and one below. You have 20 seconds for each row, then it beeps and you have to move on to the next row. Four minutes and 40 seconds are available for the actual test and the neuropsychologist then counts how many objects were processed per line based on the last marked character and how many of them were correct or incorrect.
In this neuropsychological test, there was a group of similar-sounding words, but only one of them was a real word. And while it was easy at the beginning, I didn’t know a single word in the later word groups and therefore couldn’t tell which was the real word. There were still a few groups of words left where I had to give up and could no longer make a statement.
Is it possible to prepare for such tests?
In principle, yes, if you try not to constantly relieve your brain in everyday life, but also to challenge it regularly. As already mentioned, I personally train my brain very specifically with an app. I’ve also been studying multiple sclerosis management since fall 2022 with the aim of obtaining my master’s degree in 2024. I’m learning a hell of a lot of new things in all kinds of areas. I read to my daughter a lot, listen to a wide variety of podcasts, try to maintain my social contacts and try out new things in different situations. Sport is also good for your mental abilities, as the body and brain are better supplied with blood and new nerve sprouts and synapses can develop.
Drinking enough water, teas or diluted juices, meditation, good sleep and mental hygiene can also help you to be mentally fitter.
I am glad that I was allowed to do the test and I know that it is not yet standard. On the one hand, there are not enough neuropsychologists, and on the other, such an examination has to be paid for. And at the MS Center Dresden, this is achieved through studies that make it possible to finance additional examinations and try out how they might or might not help in everyday clinical practice. After all, not everything that is tried out becomes part of general care, even if it is considered useful.
Of course, it will be exciting to see whether I continue to perform in line with my age in a few years‘ time when I am compared with healthy control subjects who have the same level of education and other comparative factors as I do.
And once again, an appeal to you. If you are lucky enough to have such a test as part of your regular care or a rehabilitation program, then take advantage of it. No matter what comes out, it can be helpful for your further journey with MS. Either as confirmation that everything is going well or as a clear indication that preventative or symptomatic treatment measures are necessary.
Thanks to the team at the MS Center Dresden
I would like to take this opportunity to thank the entire team at the MS Center Dresden, who try to provide truly comprehensive care for their patients and, with their research and the knowledge gained from it, to positively influence the lives of all other MS patients by trying to establish holistic care. It is clear that this is becoming increasingly difficult due to financial challenges and is therefore not always successful. But fortunately, Prof. Tjalf Ziemssen and his team are not discouraged by this.
What experience have you had with neuropsychological testing?
What is your situation? Have you already had neuropsychological testing and if so, in what context? How did you feel about the test itself and did it have any consequences for your treatment? Or have you been consciously training certain skills since then? Please let me know and write to me.
By the way, next time I will be welcoming Prof. Christoph Heesen from the University Hospital Hamburg Eppendorf as a guest in the interview. We’ll be talking about a subject close to his heart, shared decision making. What is it all about? What requirements must be met? And what advantages and disadvantages are associated with it?
See you soon and try to make the best out of your life,
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