In recent years the MND Association has funded healthcare research into cognitive and behavioural change in people with MND. To get an update on the latest research in this area, and to understand its impact in supporting people with MND and their families, I attended the first clinical session of the International Symposium – dedicated to this area.
As Prof Ammar Al-Chalabi from King’s College London mentioned in his opening presentation of the symposium – there are many sub-groups of MND even within each clinical diagnosis. In a parallel way, there are many types of cognitive and behavioural change. Dina van der Hulst from University of Edinburgh presented some research on her MND Association-funded PhD studies looking at these subtypes. In particular, she wanted to know whether so called ‘executive’ changes (eg difficulty in making decisions) were seen separately or at the same time as, changes in using and finding words (language or semantic changes).
She used a series of psychological tests in a group of 37 people with MND. As an aside, I find these tests really fascinating, for a start, they have great names eg ‘pyramid and palm trees test’, ‘kissing and dancing test’! They’re cleverly designed to find out specific ways in which our brains work, from asking people to complete seemingly non-research related tasks.
Slightly under a third (12/37) of those who participated in the study showed signs of executive and language changes, and another 19% (7/37) showed language changes only.
The emphasis for delegates listening was: take note, there is evidence that some people with MND may have language difficulties including their choice and use of words. This knowledge may allow us to better support people with MND.