Cognitive and behaviour change in MND

What you should know

• Many people with MND will not experience cognitive and behaviour change.
• Around 35% of people living with MND may experience mild changes to thinking and behaviour. 
• Up to 15% of people will show more significant changes and be diagnosed with ‘motor neurone disease with frontotemporal dementia’ or MND/FTD.¹
• Lack of motivation is a common issue. Those affected may also have trouble concentrating, finding the right words for conversations, solving problems and expressing emotions. 
• Early diagnosis and support for cognitive and behaviour change can improve quality of life, even if changes seem mild.²
• Changes to thinking and behaviour can affect a person’s ability to make decisions about their care and treatment.³ For this reason, planning ahead is important.
• A general practitioner (GP), neurologist or specialist MND clinic can arrange screening and help to diagnose cognitive and behaviour change.
• Cognitive and behaviour change may be due to MND or a result of other factors. Understanding the cause will help you access the right support.

Introduction

Research has found that over 50% of people with MND can experience changes in thinking and behaviour.¹Most people experience relatively mild changes. 

However, up to 15% of people living with MND show signs of frontotemporal dementia (FTD). These people may receive a diagnosis of ‘motor neurone disease with frontotemporal dementia’ or MND/FTD.⁴ 

Often the changes in cognition and behaviour come before the motor symptoms, sometimes by a number of years.⁵

What causes cognitive and behaviour change?

MND can directly affect the frontal and temporal lobes of the brain leading to changes in thinking and behaviour. ⁶

However, changes may be caused by something else. Changes to thinking and behaviour may be due to a range of factors, including:

• fatigue
• pain
• medication side effects
• anxiety and/or depression 
• difficulty managing strong emotions.

If you notice changes, talk to your healthcare team. They can work with you to find out what is causing cognitive and behavioural change.

How might changes affect me?

When cognitive and behaviour changes are mild, they may be hard to notice. They may not seem to affect your daily life. 

When changes are more obvious, they can cause confusion and misunderstanding, which may have a negative impact on your daily life and your relationships.

What kind of changes can happen?

The changes vary from person to person, however some of the most common symptoms are listed below.

Some problems due to changes in thinking are:

• focus
• thinking quickly
• learning new things
• recalling information from memory
• reasoning, problem solving and making decisions
• planning and organising
• awareness and insight into MND symptoms.

Some changes in behaviour or personality are:

• apathy – feeling less motivated and losing interest in activities, even ones you enjoy
• rigidity – resistance to change and trying new activities
• being impulsive – doing or saying things without thinking about the outcome
• irritability – having a ‘shorter fuse’ or reacting with more anger than usual to events
• disinhibition – problems in controlling behaviour, such as saying the wrong thing during social events.

Some changes in language are:

• unusual speech patterns, writing or spelling
• trouble finding the right word when talking to people
• taking longer to respond when talking to people
• problems understanding the meaning of words
• using unusual words to get a message across
• repeating words or phrases over and over.^7-10

What is emotional lability?

Sometimes people living with MND have emotional responses that do not match how they really feel. This is called emotional lability, or pseudo-bulbar affect. 

An example of emotional lability is laughing uncontrollably at something you would not usually find funny. You might cry more than you used to. You may lose your temper. 

Emotional lability can be distressing for you and your family and friends. Knowing this is a symptom of MND makes it easier to manage.

Emotional lability is more common in people who also have cognitive and behaviour change. But it can also happen on its own, so having emotional lability does not mean that your thinking and behaviour will also change. 

Some tips to manage emotional lability are:

• remind yourself or the person you care for that the emotional response is a symptom of MND
• if you can, take slow, deep breaths through the nose
• try to distract yourself or focus on something else
• let your friends, family and healthcare team know about the symptom
• medications.

Find out more about emotions and caring for your mental health

Who can help?

If you notice any of the symptoms listed above, or simply don’t feel like yourself, talk to a health professional. 

Your general practitioner (GP) is a good place to start. You can also talk to your neurologist or another person at a specialist MND clinic. They can do some tests and work with you to understand what is going on. They can also look at other factors, like anxiety or fatigue, to see if they are causing changes to thinking and behaviour. 

Clinical neuropsychologists can also diagnose changes in cognition and behaviour. They can help you and your family develop practical strategies to manage symptoms. Strategies may include things like reducing distractions, using shorter phrases, memos and aids.^{11, 12}

Find out more about who can help with cognitive and behaviour change

Tips to help you adjust to cognitive and behaviour change

If you are affected by cognitive and behaviour change, you may find some of the tips below helpful.

• Above all, be kind to yourself.
• Ask for support through your State MND Association.
• Try to start a daily routine and stick to it as much as you can.
• Try to limit the number of appointments each day.
• Choose activities that are easy to manage and take breaks when you need to.
• Try to focus on what you can do and find ways to keep doing the things you enjoy most.
• Keep a healthy lifestyle, stay social and do activities that engage your mind.
• Use aids like a diary and notes to help you remember things.
• Hang a whiteboard on the wall in your kitchen for an easy, visual way of keeping track of things.
• Take your time when talking to people about your needs or expressing yourself.
• Try to keep communications simple. For example, use shorter phrases, pictures and gestures to help explain.
• Try to socialise in quiet places where you feel comfortable.
• Let family and friends know about the changes and what they can do to help.
• Be aware that your mood may be affected and discuss changes with a counsellor if you need to.
• Consider talking to a lawyer about legal issues to make sure your plans and wishes for the future are in place.

Tips for carers, loved ones and families

Caring for someone living with MND can get more complex if thinking or behaviour are affected. Although these changes can be mild, the problems can be more severe if the person with MND develops frontotemporal dementia (FTD). 

First, read through the section above, ‘Tips to help you adjust to cognitive and behaviour change’.  You may find these tips help you as a carer too.

You can also ask for guidance from the person’s healthcare team or your local State MND Association. See ‘Who can I talk to about cognitive change?’ on the Cognition, Thinking and Behaviour web page for more information. 

For people diagnosed with MND-FTD, Dementia Australia has a range of resources and support available, including the National Dementia Helpline 1800 100 500.

The following suggestions may also assist:

• aim for a simple daily routine
• aim to limit the number of appointments each day
• try to keep calm and model the behaviour you want to see 
• be patient, allow for extra time
• keep a close eye on warning signs or triggers like tiredness or pain
• if the person is behaving in an aggressive way, try to give them space until they calm down
• ask for support when you need it – from family, friends, your State MND Association or health professionals.

More information

More information

• Learn more about cognitive impairment, including testing and treatment, via healthdirect
• Visit Dementia Australia for more information about fronto-temporal dementia (FTD)