More than 50% of people living with MND experience changes to their thinking and behaviour. This is known as cognitive change.
Most of the time, changes to thinking and behaviour are mild. But even minor changes can affect your ability to communicate your needs and make decisions. Understanding the impact of cognitive change can help you to better manage day to day activities and plan for future needs.
You will find tips and strategies on how to manage changes to thinking and behaviour in our Cognitive and Behaviour Change fact sheet. The fact sheet also has advice for carers.
Some of the most common symptoms include the following:
See below for more information about symptoms and who can help.
MND can affect the way a person thinks, behaves and expresses themself.
Possible changes in thinking include problems with:
Possible changes in behaviour include:
See the Cognitive and Behaviour Change fact sheet for tips on how to manage changes to thinking and behaviour.
Possible changes in language include the following:
See the Speech and Communication web page for tips on how to manage language and speech changes.
Changes in thinking and behaviour can also be signs of other conditions. They might also be a side effect of medication. A diagnosis of MND can also lead to strong emotions, or impact mood. With MND, you might feel like you are losing control. All these things can impact on your behaviour, and the way you respond to things.
If you are aware of any changes in your thinking or behaviour, or feel more emotional than usual, speak to your healthcare team. They can check to see if the changes are due to MND, or another disease. They can also decide if any treatment is needed.
Some people living with MND experience emotional lability, or pseudo-bulbar affect. This is when emotional responses are different to how you really feel.
An example of emotional lability is crying at something you wouldn’t usually find sad, or laughing at something that is not funny.
Emotional lability can be confusing. It can help to speak to your GP or healthcare team about ways to manage it. People may experience emotional lability even if they don’t have other signs of cognitive change.
Find out more about emotions and caring for your mental health
A small number of people with MND (5–15%) will receive a diagnosis of ‘motor neurone disease with fronto-temporal dementia’. Doctors call this MND/FTD. Often the symptoms of dementia happen before the motor symptoms, sometimes by a number of years.
Changes to behaviour, thinking and language can be similar to those described above. However, the changes have a greater impact on a person and their carers, and get worse over time. A person with MND/FTD will need more support.
You can find out more about FTD via the Frontier Research Group, the largest specialist fronto-temporal dementia (FTD) clinic in Australia.
If you or someone you know has any of these symptoms, talk to your GP, neurologist or specialist MND clinic.
The health professionals and services listed below can help to diagnose, treat and manage cognitive and behaviour change.
GP (general practitioner): can advise, prescribe medication and connect you with other specialists as needed.
Neurologist: can arrange and coordinate screening and other tests, prescribe medication, and monitor symptoms for progression.
Clinical neuropsychologist: can assist in diagnosing changes in thinking and behaviour. They can advise you and your family on practical strategies to manage symptoms.
Psychologist: can assist with tools and therapies to improve and manage changes to emotions and behaviours.
Occupational therapist: gives advice about home modifications and different ways of doing tasks.
Speech pathologist: gives advice about communication aids and devices.
Behaviour support practitioner: can advise about managing difficult behaviours, including changes in eating habits.
Geriatrician: gives support and advise to people over 65 who have complex health needs, including cognitive issues and mobility.
MND Association advisor: helps to connect you with services and gives ongoing support and information to people living with MND, their families and service providers.
Some strategies that can help when talking to health professionals may include: