Managing psychological and cognitive changes in MND

Cognitive and behavioural changes in MND and how to manage these symptoms

Dr Emily Mayberry

“We know now with MND that cognitive and behavioural changes are very common; in fact the research suggests that they affect up to half of people with MND. For a smaller proportion of people, for about ten percent of MND, those cognitive and behavioural changes can be quite significant and can have a really big impact on a person’s ability to think and the way that they act.

But even for the other people who are affected more mildly, it can be worrying to not know what’s going on - both for the person with MND and for the people around them, the family members and healthcare professionals who are working with them.

Some of the main areas that tend to be affected are people’s ability to find the words. So, in addition to producing words, which can be affected if someone has speech problems, people’s ability to actually identify the word they want to use can be affected. People can also have difficulty with planning and organising, so being able to think through multi-step tasks and know what order to do things in, and how to sequence items so that the task works and makes sense.

Related to that, people can have difficulties stopping themselves from doing things that might be automatic. So, just as an example, it might be that people make comments that they wouldn’t normally make that feel just a bit inappropriate or unusual for them.

It can be more severe, or it can be quite subtle, but just having an understanding that that’s what’s going on, that people might need more time, they might need instructions to be repeated, they might need to have things written down or use pictures - it’s about working out for that individual, what works for them.

If people have cognitive problems, it can also affect other aspects of their care. So, if someone needs to use NIV, they might struggle to actually think in an abstract way, they might think that they can breathe reasonably okay right here, right now. So why would they need to use this machine?

People might also struggle to understand the wider implications of not using it and what effect that could have on them and, from a more practical perspective, people might not remember, or struggle to work out, the sequencing for what they need to do and how to do it. People might need prompts, or they might learn the wrong way of doing something and get quite stuck in that pattern and need a lot of help to re-learn how to do it the right way.”

Describing the psychological difficulties that people with MND face, particularly when thinking about NIV

Dr Emily Mayberry

“People with MND can get frustrated for lots of reasons and it’s something that comes up frequently in my sessions with people. It’s just that real sense of frustration and it can be caused by a number of things. It can be caused by the disease and the loss and the things that people are no longer able to do for themselves. That can be really frustrating, to have to sit and wait for someone to help or not to have it done in the way that you would want it done.

It can also be frustrating to not fully understand what you need or why people are doing things, or not doing things, in a certain way and that can be related to cognitive changes that can occur in MND.

Frustration can come out in a number of ways. It can be verbal, it can be about people shouting or getting really angry. It can be about people stamping their fists or their feet or it can be a much more internal thing where the person just gets really down and appears very distressed and it’s difficult to work out what’s going on.

That sense of frustration can then also be felt by the people providing care. If you don’t know why this person is so upset or so frustrated - they might or might not be able to communicate it in a way that makes sense to someone else - that can be really frustrating for us as well, not knowing what to do or how to make it better. I think that can be a really difficult thing, we end up feeling that the person is actually frustrated with us when oftentimes they are really frustrated by the situation and might feel quite confused or worried about what’s going on.”

How to deal with our own frustration

Dr Emily Mayberry

“If we find ourselves - or for me it’s a matter of when we find ourselves - in those situations where we feel frustrated and we don’t know what to do, or how to help, and sometimes even a bit confused about what’s going on, I find it really helpful to realise that oftentimes that’s the same feeling or feelings that the person with MND is experiencing themselves; and actually just acknowledging that can be really helpful and can sort of diffuse some of the stress.

Just to say ‘This can be really frustrating, isn’t it? Seems like you’re finding this really, really frustrating and I can understand why you’d feel angry’ can help give the person permission to feel the way that they feel, and it can also be validating for ourselves to know that actually this is really frustrating and a really difficult situation to be in.

I started working in MND about three years ago and I remember in my interview being asked about dealing with the distress and the difficulty that can come with working in MND; and at the time I remember thinking that it must be really difficult and really distressing but so are many other diseases and so are many other conditions and problems that people have in their lives.

I think it wasn’t until I really got started working in this area that I realised myself the difference in the way that it feels, working with people with MND, and it isn’t always about the distress of the people we work with, sometimes it’s the distress we experience watching people’s health deteriorate, watching people having to make difficult decisions at the end of their life.

I was really aware that I was spending more and more time working and wanting to make sure that I had got everything right and that I didn’t let anyone down. It felt like people with MND and the people around them, their family members, have enough to deal with and, for me, I felt a real pull to want to rescue, and step in, and to make things okay; and sadly in MND we can’t make things okay.

We can be there alongside people in the journey and offer the support that we are able to provide but we can’t take the MND away, we can’t make them better and I think, as healthcare professionals, we often want to make people better or we want to make people feel better and watching someone deteriorate is really hard and we can feel quite helpless and unsure what to do.

I think that can come out in us as healthcare professionals in lots of different ways; but I think it’s really important to recognise when it’s happening and when we’re feeling that way and there are different things that are helpful for different people - whether it’s speaking with other colleagues and finding out how other people are feeling and recognising that there is a shared experience there, whether it’s taking some time to just do the things that we enjoy and that kind of fill our cup and keep us going. Sometimes for me, just spending a couple of minutes doing mindfulness, focussing on my breathing, just bringing myself back into the present can be helpful.”

Importance of reaching out when having concerns about how to manage patient distress

Dr Emily Mayberry

“If you’re working with someone and you’re concerned that they are really distressed and you’re not quite sure how to manage it yourself, then it’s always worth talking to people within your team, speaking with a psychologist, if there is one who is linked up, to just get some advice about how to approach things with that person.

Hospices often have counsellors; many of the nurse specialists working in MND have got loads of experience and have been doing it for years and years. So, it’s about just reaching out to someone and getting some advice and some help to make sure that you feel able to approach it in a way that works for you and will hopefully be helpful for the person with MND as well.”