Thinking & Behaviour
Understand cognitive and behavioural changes in MND
Review status: Waiting for team review. An AI editorial check was completed on 2026-08-14 by claude-opus-5. It checks clarity, attribution and scope against the sources, and it is not a Compass team or clinical sign-off. Waiting for clinical review. Last updated 2026-08-14.
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Planning 3
- Notice changes kindlyNote any changes in thinking, language, mood or behaviour, with a few recent examples.Why it matters: Specific examples help the care team understand what is happening, and noticing without blame protects relationships.
- Talk with your teamRaise the changes with your GP or MND team, and ask whether a simple cognitive or behavioural check would help.Why it matters: Treatable causes can be checked, and a screening check can show whether fuller assessment would help and guide support and decisions.
- Plan key decisions earlyWhere decisions like NIV, a feeding tube or advance care planning are ahead, start them while it is easiest to take part.Why it matters: Planning early means wishes are clearer, more genuinely the person's own, and easier to follow later.
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MND is best known for affecting movement, but for some people it can also affect thinking, language, emotions, or behaviour. This happens because the same disease process can involve parts of the brain that handle these things, not only the nerves that control muscles.
It is important to be clear: this does not happen to everyone, and when it does, the changes are often mild. Many people notice no change at all. For others, family or the care team may notice small differences over time. A smaller number of people experience more noticeable changes.
Changes can show up in different ways. Some people find planning, organising or making decisions a little harder. Some notice changes in language, like finding words. Some find their emotions feel closer to the surface, or that motivation or social behaviour shifts. These are part of the condition for those affected. They are not a personal failing, and they are not something anyone has done wrong.
Understanding that this is possible can help in two ways. It can take away some of the fear of the unknown. And if changes do appear, knowing they may be disease-related can help families respond with patience and get the right support, rather than feeling confused or hurt.
The questions on this card look at what changes can look like, how to tell them apart from things like stress or fatigue, when to ask for an assessment, and what can help.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. Changes to thinking, emotions or behaviour do not happen to everyone with MND, and where they do happen they are usually mild.
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Puts the figure at up to half of people with MND, so not everyone, and says that for most people the changes have little or no effect on daily life. It also says the figure rises to 8 out of 10 people in the later stages of MND, which question 02 reflects in words rather than as a figure.
“Up to half of people with MND have changes to thinking and behaviour, known as cognitive change.”
Section 1: Will my thinking and behaviour change with MND?, page 5Link checked August 2026
Supports this. Cognitive and behaviour change in MND — MND Australia · Practical guide
Opens by saying many people with MND have no cognitive or behaviour change at all, and adds that among those who do, most changes are relatively mild.
“Many people with MND will not experience cognitive and behaviour change.”
What you should knowLink checked August 2026
Statement 2 of 2. Where changes in thinking or behaviour happen, they are caused by the disease rather than by anything the person or their family has done.
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Tells carers directly that behaviour that feels hurtful is the disease at work and not the person, in its section on supporting someone whose thinking and behaviour have changed.
“Keep in mind that it's the disease causing these changes.”
Section 5: What if I'm supporting someone with MND who has changes to their thinking and behaviour?, page 22Link checked August 2026
Supports this. Frontotemporal Dementia (FTD) and ALS — ALS Network · Practical guide
Says the same thing from both directions: challenging new behaviours come from changes in the brain, so they are neither the person being deliberately difficult nor a sign that the family is doing something wrong. No quote is recorded because the sentence contains an em dash that the fetching tool renders as a hyphen, so its exact punctuation could not be confirmed.
Link checked August 2026
Used across the whole answer
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Changes vary a lot from person to person. When they do happen, they tend to fall into a few areas.
- Thinking and planning. Some people find it harder to plan ahead, organise tasks, switch between things, or make decisions. This is sometimes called a change in "executive function".
- Language. Some people find words come less easily, or that following fast conversation is harder.
- Behaviour and motivation. Some people become more impulsive, more fixed in their routines, less motivated to start things, or less aware of how others are feeling.
- Emotions. Some people find emotions come more readily. One specific change is emotional lability, where laughing or crying happens more easily or strongly than the situation calls for. This can feel surprising but is well recognised and can be managed.
How common is this? Up to around half of people with MND notice some change in thinking or behaviour, and for most it is mild. A smaller number experience more significant change, sometimes called frontotemporal change or frontotemporal dementia, which has a larger effect on behaviour, language or judgement. Some degree of change also becomes more common in the later stages of MND.
Two things are worth holding onto. First, mild changes are the most common picture, and many people have none. Second, naming what is happening usually helps. It lets the care team offer the right support, and it helps family understand that a change in behaviour may be part of the condition rather than a change of heart.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. Up to around half of people with MND experience some change in thinking or behaviour, and for most of them the change is mild.
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Gives the same figure and the same severity picture: up to half of people with MND, and for most of them little or no effect on daily life. It also puts a number on the later stages, saying the proportion rises to 8 out of 10 people, which this answer describes in words rather than as a figure.
“Up to half of people with MND have changes to thinking and behaviour, known as cognitive change.”
Section 1: Will my thinking and behaviour change with MND?, page 5Link checked August 2026
Qualifies this. Cognitive and behaviour change in MND — MND Australia · Practical guide
Agrees that most changes are relatively mild, but puts the proportion a little higher than this answer does, at over half rather than up to half. Its own summary page splits this into around 35% with mild changes and up to 15% with frontotemporal dementia.
“Research has found that over 50% of people with MND can experience changes in thinking and behaviour.”
IntroductionLink checked August 2026
Statement 2 of 3. A smaller group of people with MND experience frontotemporal change or frontotemporal dementia, which affects behaviour, language and judgement more markedly.
Supports this. Cognitive and behaviour change in MND — MND Australia · Practical guide
Puts a number on the smaller group: up to 15% of people with MND, who may be given a diagnosis of motor neurone disease with frontotemporal dementia.
“Up to 15% of people will show more significant changes and be diagnosed with 'motor neurone disease with frontotemporal dementia' or MND/FTD.”
What you should knowLink checked August 2026
Supports this. Frontotemporal Dementia (FTD) and ALS — ALS Network · Practical guide
Describes frontotemporal dementia as affecting behaviour, personality and language, and estimates it affects about 15% of people diagnosed with ALS. Its symptom list includes poor judgement and impaired social skills.
“Research over the past 30 years, however, has shown that some people diagnosed with ALS also experience some degree of frontotemporal dementia (FTD), a brain disorder that can affect behavior, personality, and language.”
Frontotemporal Dementia (FTD) and ALSLink checked August 2026
Statement 3 of 3. Emotional lability is a recognised symptom in MND and there are ways to manage it.
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Names emotional lability as a known MND symptom, says the outbursts are usually brief and tend to settle over time, and points people to their GP or neurologist for support, adding that medication may help.
“These outbursts are usually short and emotional lability usually reduces over time.”
Section 1: Will my thinking and behaviour change with MND? - What is emotional lability?Link checked August 2026
Supports this. Cognitive and behaviour change in MND — MND Australia · Practical guide
Also names it, and gives practical steps for managing it: recognising it as a symptom, slow breathing, distraction, telling family and the care team, and medication.
“Knowing this is a symptom of MND makes it easier to manage.”
What is emotional lability?Link checked August 2026
Used across the whole answer
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This is an important question, because not every change in thinking or mood is caused by MND. Several other things can affect concentration, memory, motivation and mood, and many of them can be eased.
Common examples include:
- Stress, worry and low mood. A diagnosis of MND is a lot to carry. Anxiety and low mood are an understandable response, and both can make thinking feel slower or foggy.
- Tiredness and poor sleep. Fatigue, broken sleep, or breathing changes overnight can all affect concentration and mood during the day.
- Breathing changes. When breathing is not fully supported, especially at night, it can affect alertness and thinking.
- Medications. Some medicines, including those for pain, anxiety, sleep or muscle stiffness, can affect alertness or mood.
- Pain and other symptoms. Being in pain or uncomfortable makes it harder to think clearly.
Because these causes can overlap, it is worth raising any change with your GP or MND team rather than assuming it is one thing or the other. They can look at the whole picture: mood, sleep, breathing, medications and symptoms, as well as whether a cognitive or behavioural assessment would help. Often, treating a reversible cause makes a real difference.
The point is not to explain changes away, but to make sure nothing treatable is missed, and to get the right kind of support for whatever is going on.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. A change in thinking or mood is not necessarily caused by MND, because other things can produce the same changes.
Supports this. Cognitive and behaviour change in MND — MND Australia · Practical guide
States the same either-or, and lists fatigue, pain, medication side effects, anxiety or depression, and difficulty managing strong emotions as the other factors that can be behind a change.
“Cognitive and behaviour change may be due to MND or a result of other factors.”
What you should knowLink checked August 2026
Qualifies this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Agrees that changes can have another cause, but frames the alternatives more narrowly than this answer does: medication, and the knock-on effect of other MND symptoms such as breathlessness, poor sleep, pain, dehydration, infection and low mood. Those are still consequences of MND rather than causes unrelated to it.
“Yes, temporary changes may be caused by some medications or the impact of other MND symptoms.”
Section 1: Will my thinking and behaviour change with MND? - Can changes to thinking and behaviour be caused by something else?Link checked August 2026
Statement 2 of 3. Anxiety and low mood can each make thinking feel slower or less clear.
Supports this. ALS Mental Health — Your ALS Guide · Practical guide
Says worrying thoughts from anxiety can disrupt the ability to think clearly, and describes clinical depression as a condition that affects how a person thinks as well as how they feel, listing difficulty concentrating among its symptoms.
“However, if you begin experiencing symptoms such as heart palpitations, shortness of breath, or uncontrollable worrying thoughts that disrupt your sleep, well-being, or ability to think clearly, it is important to discuss these symptoms with your ALS care provider.”
Addressing AnxietyLink checked August 2026
Statement 3 of 3. Weak breathing, particularly overnight, can affect alertness and thinking.
Supports this. NICE MND guideline — NICE · Clinical guideline
The table of symptoms and signs this recommendation points to includes poor concentration and memory, confusion and daytime sleepiness alongside disturbed sleep, non-refreshing sleep and morning headaches, so the guideline treats changes in alertness and thinking as things weak breathing can produce. Elsewhere it refers directly to cognitive problems that may be related to respiratory impairment.
“Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.”
1.15.7Link checked August 2026
Used across the whole answer
Background the team read
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If you or your family have noticed changes in thinking, language or behaviour, it is reasonable to raise it and to ask whether an assessment would help. You do not need to wait for changes to become obvious.
Screening is usually a short, gentle check of thinking and behaviour. It can be done by members of the MND team, and there are tools designed specifically for use in MND that aim to take account of physical and speech changes. If screening suggests it would help, a fuller assessment with a neuropsychologist or other specialist may be offered.
There are good reasons to consider it:
- It can sort out what is happening, including whether something treatable (like low mood or poor sleep) is playing a part.
- It helps the team tailor how they share information and support decisions.
- It helps family understand changes and respond well.
- It can be useful to do earlier rather than later, while it is easier to take part and while it can inform planning.
Some people feel unsure about screening, and that is understandable. It is your choice, and you can ask what it would involve and what it would and would not tell you before deciding. The aim is never to label anyone. It is to make sure you get the right support and that important decisions are made in good time and in the way that fits you.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. It is reasonable to ask about cognitive or behavioural assessment early, without waiting for changes to become obvious.
Supports this. NICE MND guideline — NICE · Clinical guideline
NICE puts the first point for exploring cognitive and behavioural change at diagnosis, before anyone has raised a concern, and again whenever a concern does come up.
“At diagnosis, and if there is concern about cognition and behaviour, explore any cognitive or behavioural changes with the person and their family members and/or carers as appropriate.”
1.3.2Link checked August 2026
Supports this. Cognitive and behaviour change in MND — MND Australia · Practical guide
Says the benefit of picking these changes up early holds even when the changes still look mild, which is the reason for not waiting until they are obvious.
“Early diagnosis and support for cognitive and behaviour change can improve quality of life, even if changes seem mild.”
What you should knowLink checked August 2026
Statement 2 of 2. Screening tools built specifically for use in MND exist.
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Names one by name, the Edinburgh Cognitive and Behavioural ALS Screen, and says other screening methods are also used. It does not say whether these tools adjust for physical or speech impairment.
“The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) is designed for use with MND, but there are various other screening methods.”
Section 1: Will my thinking and behaviour change with MND? - How do I get checked for these changes?Link checked August 2026
Used across the whole answer
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Changes in thinking or behaviour can affect some of the most important parts of living with MND, which is exactly why it helps to understand them.
Communication. If language or processing changes, conversations may need more time, simpler sentences, and fewer choices at once. This sits alongside any physical communication changes covered on the communication cards.
Big decisions. MND brings major decisions, such as non-invasive ventilation, a feeding tube (gastrostomy), and advance care planning. Making these decisions well depends on being able to weigh information. If thinking changes, it can become harder, and it can affect capacity, which is the ability to understand and decide about a particular thing at a particular time.
This is the strongest reason to plan early. When wishes are explored and written down while it is easiest to take part, they are clearer, more genuinely the person's own, and easier for others to follow later. The advance care planning card is where to take that further.
Decision support. If decisions become harder, support can be built in: a trusted person to help talk things through, a substitute decision-maker named in advance, and a care team who share information in ways that work. Support like this is not about taking decisions away. It is about making sure a person's own values still guide what happens.
If you are weighing NIV, a feeding tube, or future care, it is worth doing the thinking sooner rather than later, and asking the team to help you record it.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. Changes in thinking can make weighing a decision harder and can affect a person's capacity to make it.
Supports this. Cognitive and behaviour change in MND — MND Australia · Practical guide
Makes exactly this link, and gives it as the reason planning ahead matters: changes to thinking and behaviour can affect whether someone can decide about their own care and treatment.
“Changes to thinking and behaviour can affect a person's ability to make decisions about their care and treatment.”
What you should knowLink checked August 2026
Qualifies this. NICE MND guideline — NICE · Clinical guideline
NICE makes the capacity point, but ties it to MND with frontotemporal dementia specifically rather than to the milder cognitive change this answer is mostly describing. Its wider recommendations do treat cognitive status as something to weigh in every discussion, including decisions about ventilation and feeding.
“Be aware that people with MND and frontotemporal dementia may lack mental capacity.”
1.3.1Link checked August 2026
Statement 2 of 2. The possibility that thinking will change is a reason to do the planning and decision-making earlier.
Supports this. NICE MND guideline — NICE · Clinical guideline
NICE tells clinicians to bring advance care planning forward for exactly this reason, when they expect a person's thinking, communication or capacity to get worse.
“Think about discussing advance care planning with people at an earlier opportunity if you expect their communication ability, cognitive status or mental capacity to get worse.”
1.7.4Link checked August 2026
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Gives the same reasoning to the reader rather than the clinician, and adds what early planning protects: that wishes are known if the person later cannot express or decide them.
“Changes to thinking can increase over time, so try to plan ahead as early as you can.”
Section 3: What can I do to manage these changes? - How do I plan ahead for future care?Link checked August 2026
Used across the whole answer
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There is a lot that helps, both for the person and for the people around them.
For everyday life:
- Keep routines simple and steady. Familiar patterns, fewer choices at once, and a calm pace all reduce strain.
- Use reminders and structure. Lists, a shared calendar, and one place for important information take pressure off memory and planning.
- Give more time. Allow longer for conversations and decisions, and check understanding gently rather than testing it.
- Reduce friction, not freedom. Where impulsive choices could cause harm, it can help to quietly manage the situation rather than confront it.
For family and carers:
- Remember it is the condition, not the person choosing to be difficult. This single shift, from "why are they doing this" to "this may be part of MND", protects relationships.
- Ask the team for guidance. They can suggest approaches for specific changes, including emotional lability, and can involve a neuropsychologist, occupational therapist or speech and language therapist.
- Look after yourself too. Behaviour change can be one of the hardest parts of caring, and carer support, respite and peer support matter. The Caregiver Wellbeing card is there for this.
For emotional wellbeing, the Mental Health Support card covers counselling and emotional support for the person and the family.
No one should manage this alone. Naming what is happening and asking for help early usually makes day-to-day life calmer for everyone.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 1. Changes in behaviour can be among the hardest parts of caring for someone with MND.
Qualifies this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Says caring for someone with MND becomes more complex when thinking or behaviour are affected, and more severe again where frontotemporal dementia develops. It does not rank behaviour change against the other demands of caring, so this answer says it can be one of the hardest parts rather than that it is.
“MND makes increasing demands on carers, but becomes more complex if thinking or behaviour are affected.”
Section 5: What if I'm supporting someone with MND who has changes to their thinking and behaviour?, page 22Link checked August 2026
Qualifies this. Frontotemporal Dementia (FTD) and ALS — ALS Network · Practical guide
Describes caring in this situation as very challenging, but is writing about frontotemporal dementia, which is the smaller and more severe group, rather than about behaviour change in MND generally.
“Caring for people living with FTD can be very challenging.”
FTD Treatment and InterventionLink checked August 2026
Used across the whole answer
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Most changes in thinking or behaviour are gradual, and the right response is an unhurried conversation with your GP or MND team at the next chance. Some situations, though, are worth raising promptly rather than waiting.
Contact your team soon if:
- A change comes on quickly or gets noticeably worse over days or weeks.
- New confusion appears, especially alongside a chest infection or a change in breathing, since it may have a cause that can be treated. Other things such as constipation or dehydration can also bring on new confusion, so they are worth mentioning too.
- Behaviour is starting to put the person or others at risk (for example, unsafe decisions about driving, money, or being alone).
- A decision that cannot wait is coming up and you are unsure whether the person can fully take it in.
- Low mood, hopelessness or anxiety is affecting daily life.
Some of these need help the same day rather than at the next chance. If new confusion or unusual drowsiness comes on with breathlessness at rest, a chest infection or another infection, or a fever, ring the team, an out-of-hours service, or your local emergency service that day. Confusion and drowsiness can be signs that breathing is not keeping up, and that needs assessing quickly rather than waiting.
Get urgent help straight away if you cannot wake the person properly, or if they are drowsy and their breathing looks laboured. Call your local emergency service now rather than waiting to try the team first.
Also seek urgent help (your local emergency or crisis service) if there are thoughts of suicide or self-harm, or if someone's immediate safety is at risk. These feelings can happen, they are not a weakness, and support is available right away.
It can help to write down what you have noticed, when it started, and how quickly it is changing, and to bring that to the team. Specific, recent examples are more useful than general worry, and they help the team work out what is going on and how best to help.
If you are not sure whether something counts as urgent, it is always reasonable to ask. Checking is never a waste of anyone's time.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. New confusion alongside a chest infection or a change in breathing is worth raising promptly, because it may have a cause that can be treated.
Qualifies this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Backs the principle, that changes like this can be temporary and can come from something treatable, and its own list of things to contact the health team about includes infection of the chest or bladder, breathlessness, disturbed sleep, pain, dehydration and low mood. It does not name constipation, which is why the marked span stops before the second sentence.
“Yes, temporary changes may be caused by some medications or the impact of other MND symptoms.”
Section 1: Will my thinking and behaviour change with MND? - Can changes to thinking and behaviour be caused by something else?Link checked August 2026
Qualifies this. NICE MND guideline — NICE · Clinical guideline
The table this recommendation points to lists confusion, and poor concentration and memory, among the symptoms of possible respiratory impairment, and recurrent chest infections among the signs. That covers the breathing and chest infection part of this bullet, though NICE frames the list as prompting a respiratory assessment rather than as a general cause of confusion.
“Monitor the symptoms and signs listed in table 1 to detect potential respiratory impairment.”
1.15.7Link checked August 2026
Statement 2 of 2. Behaviour that is starting to create real risk, including around driving, money and being alone, is a reason to go back to the care team.
Supports this. Changes to thinking and behaviour with MND — MND Association · Practical guide · January 2024
Says professional advice is needed for problems caused by changes to thinking and behaviour, and covers the same three areas this bullet names: driving, where in the UK the licensing authority (DVLA, or DVA in Northern Ireland) must be told and the GP advises whether to keep driving, with reporting rules differing elsewhere; money, impulsive spending; and being alone, safety at home and outside.
“Advice from the person's health and social care team is essential to help you manage problems caused by changes to thinking and behaviour.”
Section 5: What if I'm supporting someone with MND who has changes to their thinking and behaviour?, page 23Link checked August 2026
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