Thinking and behaviour with MND

In the last few years new research has shown that more people with MND than previously realised experience changes to thinking and behaviour (called cognitive change), including:

  • Apathy and reduced concentration
  • Language problems, including remembering words and spelling
  • Problems learning new things and being able to recall these later
  • Difficulties with planning and decision-making
  • Impulsive behaviour.

These changes may affect 1 in 2 people, but they are likely to be mild, up to 15%, will experience a form of dementia called frontotemporal dementia (MND Association 2017).

Most people we talked to had not noticed any major changes in their own thinking or reasoning, but often others notice the changes first. Tiredness and difficulty in concentrating were common – tiredness is explored further in ‘Tiredness, pain and discomfort‘. Many valued the fact that even though their physical strength had been affected their mind seemed as clear as ever. Some even felt their mind was sharper. One man who was working full-time as well as doing a part-time PhD explained why this was important to him.

It is important to him that his mind is unaffected and he can continue to work in the same job.

Age at interview 55

Gender Male

Age at diagnosis 51

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The fact is that it’s very important for me, because I’ve been working in this area for a long time, and I’m with the same company since now twenty-five years. And [coughs] for me it’s very important because it’s the progression of my career, leading me to do now application of a lot of my experience in the research and technology, where I’m working. So it’s more intellectual rather than physical. Because I know that MND doesn’t affect my intellectual capability etc, so I can use computers, I can do it. So it’s for me one way to still exist and still be useful, and feel that I’m not useless. So it’s very important, yes, to go every day, interact with people. And by luck I still can speak, and that’s very important. I can communicate with people.

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However, a few people had noticed changes in themselves or a family member with MND. One man said during his interview, ‘There are words that I can’t get and words that I can get.I can’t find the words for when I’m talking to you.’ He described a recent event when he had become confused, and how his concentration had been affected.

He recently had a ‘funny turn’ and became confused. He finds it harder to do crosswords or read a…

Age at interview 73

Gender Male

Age at diagnosis 68

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Yeah, well, as I say, that – when I had a funny turn about two or three weeks ago, was it? I don’t know when it was. I just didn’t know, I just did not know where I was. I didn’t know, I’d been to, I remember going to this dinner for a friend of ours, his birthday, and we had a good time. We, we got lost going over. I can remember getting lost in the car. You see, now, that wasn’t me, because I knew my way all the way round this area, all the way…

You were driving?

I was driving. And we went, and got there. We was a bit late because there, I didn’t know exactly where this pub was. But we had a good time, we had our meal, and things like that. But I can’t tell you what happened afterwards. I can’t tell you, I can’t tell you if I saw a doctor. I got lumps taken out of my hands, I know that, where they was taking blood tests out of me. And I was laid in a bed, but I wasn’t there as long as I thought I was, I was there. I was there – I felt as if I’d been there ages. I didn’t even know my name. I just, it just was, everything had gone. But you see, and then of course I, I come back with the world, with the world of pretend again. I, get out of it that way, you know. I mean, if they’d have said, ‘What’s happened to you?’ I could have told them what, what’s happened to me. But how I got it, or what happened to me, put it that way, I don’t know.

You talked a bit about feeling that, that the condition has affected your ability to remember things[Oh]and to find words. Just tell me a bit about how you noticed that happening.

Terrible, it’s absolutely terrible, the words that you can’t find. Always reminds me of Ronnie Barker and his ‘worms’ [laughs], you know. It’s a relief, you know, you can look at something and, and think that somebody else has got the same thing. But, I mean they haven’t, but this is just all part of the, the game really.

When did you first think it was affecting your memory?

Oh, about a year ago, eighteen months ago, maybe.

What, what made you first become aware of it?

I can’t read.

What, when you pick up a book you can’t?

Yeah, I can’t concentrate on it. Yes. And that’s what causes – again, it causes panic. Because you, because that, that’s a substance that you can look at. You know you should be able to do this, or you know you should be able to do that. There is no way that you shouldn’t be able to, at my age, pick up a book and read it. But I don’t, don’t read at all now.

And crosswords, I think you said.

Oh, crosswords, I do the crosswords. Well, again I used to [laughs]. I don’t do them as well as I used to. I mean I used to be able to do sort of The Telegraph and things like that. But I, I’m shot right out there now. If I get halfway through The Sun I’m very lucky. Yeah. But I still keep on trying, because you never know – it might come back. If I got it that easy, I bloody should be able to get rid of it somehow, shouldn’t I?

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Often changes may be more obvious to a carer than to the person themselves. Some carers had noticed changes before diagnosis and thought at first it might be because of old age. It is important for carers to know of the possibility of changes, so they understand why their relative’s behaviour has changed, and perhaps feel less frustrated or upset by it.

Her husband’s thinking has slowed down. He gets anxious and stressed when they try to plan…

Age at interview 54

Gender Female

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Now, how do you think you cope now?

Probably a lot better. Because I’m no longer quite so scared of, of what might happen from week to week. So I will, I will try and make arrangements. But I have to be careful that I don’t make him anxious by making arrangements for things. For instance I want to go and visit our grandchildren soon. So Ill start talking about it. And he’s an intelligent man, but he’s slowed down, if you see what I mean, in the way that things don’t always go in first time. So I will repeat that were going to go down, until it’s in there. And then he will start checking with me when were going to be going. And if I can play it slowly, he wont get anxious, and it wont get cancelled. Because when he gets, gets anxious he gets ill. So I, I can work things out, and I can go up to about six weeks ahead. After that I don’t make appointments. There’s no point really.

So you don’t plan for the future?

No, there, there’s nothing really, I cant plan holidays, because we don’t go on holiday. I plan his respites four months in advance, because he doesnt need to know about it. He knows it’s going to happen, and I will introduce it at such a time. And he knows that is what happens. He’s not silly. He knows what I do behind his back. And I arrange things from week to week, to meet my girlfriends for a coffee, something like this. But other than that, there isnt anything we need to plan for.

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Even before diagnosis she noticed her husband had become forgetful and slow. The family described…

Age at interview 59

Gender Female

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We went to Ireland last April and while we were in Ireland I noticed many things. I noticed that he would forget where we were going. And one day he went right past my mother’s house. And he would laugh at anything. It was very strange. Another day we were out and we were going to a garden centre and he had forgotten where the garden centre was, even though we had been there many times before. So this really started getting me worried. And I thought actually it was a brain tumour or it was Alzheimer’s. I really thought that.

He’s much, much slower. He’s got very slow. And like last year before we knew he had this complaint we always thought he was getting so dithery. That’s all I can describe it. And our sons used to say ‘Gosh, Mum, Dad’s getting so dithery. It’s because he’s not doing anything and his brain is stagnating’ and all the rest of it. ‘He ought to be, you know, start doing something. The voice is like he’s got a cold. When I speak to him on the phone it’s like an old man. That’s how I can describe it. He’s like an old man on the phone. He spoke to my brother-in-law. He thought it was his father, because he sounded just like his father.

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Where the changes are more severe, as with frontotemporal dementia, there is likely to be a need for increased support from health and social care services. Carers may need to ask for a carer’s assessment (or follow-up review) through their local authority (or local health and social care trust in Northern Ireland). Carers will also need to discuss support for the person with MND and frontotemporal dementia with the supporting health and social care team to work out any specific needs.

It is important to be aware that not all changes in behaviour are a sign of mental or cognitive impairment. They may also happen as a result of depression, or ’emotional lability’ – this is a term used to describe a tendency to laugh or cry unexpectedly at what might seem the wrong moment, which affects some people living with MND. This can be distressing for those close to the affected person as well as the individual. Emotional lability does not necessarily mean there is any other change to thinking or behaviour. Treatments may help manage depression and emotional lability. These symptoms are explored more fully in ‘Emotional lability, depression and low mood with MND’.

Cognitive change

Initially, it was thought that Motor Neurone Disease (MND) only affected the nerves used to control muscles. Research has given a better understanding of changes in the brain that affect thinking, emotion and behaviour. These changes are described as cognitive change. The MND Association website provides three information sheets to help: 9A: Will the way I think be affected? 9B: How do I support someone if the way they think is affected? and 9C: Managing emotions, which includes information about emotional lability.