Motor Neurone Disease (MND)

Forgetfulness and thinking

In the last few years new research has shown that more people than previously realised experience some cognitive changes, including:

  • Forgetfulness and reduced concentration 
  • Language problems, including remembering words and spelling
  • Problems learning new things
  • Difficulties with planning and decision-making
  • Impulsive behaviour.

These changes may affect 1 in 2 people, but they are likely to be mild, a very small proportion, perhaps 5-15%, will experience a form of dementia (MND Association 2014).

Most people we talked to had not noticed any major changes in thinking or reasoning, but often it is others who 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.

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.

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 minor changes, so they understand why their relative's behaviour has changed, and perhaps feel less frustrated or upset by it. 

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.These symptoms are explored more fully in 'Emotional lability, depression and low mood'. Treatments are available to help manage depression and emotional lability.

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. For further information about cognitive change, the MND Association's website features an information sheet for carers on Cognitive impairment in MND.

Last reviewed September 2014.
Last updated
September 2014.

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