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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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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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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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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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.