Changes to thinking and behaviour with MND

Used across the whole answer

✓Supports this

“Where changes in thinking or behaviour happen, they are caused by the disease rather than by anything the person or their family has done.”

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 22

✓Supports this

“Changes to thinking, emotions or behaviour do not happen to everyone with MND, and where they do happen they are usually mild.”

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 5

!Qualifies this

“A change in thinking or mood is not necessarily caused by MND, because other things can produce the same changes.”

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?

Used across the whole answer

✓Supports this

“The possibility that thinking will change is a reason to do the planning and decision-making earlier.”

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?

✓Supports this

“Screening tools built specifically for use in MND exist.”

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?

Used across the whole answer

!Qualifies this

“Changes in behaviour can be among the hardest parts of caring for someone with MND.”

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 22

✓Supports this

“Emotional lability is a recognised symptom in MND and there are ways to manage it.”

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?

✓Supports this

“Up to around half of people with MND experience some change in thinking or behaviour, and for most of them the change is mild.”

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 5

✓Supports this

“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.”

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 23

!Qualifies this

“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.”

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?

Further reading

A gentle guide for people and families on changes to thinking and behaviour with MND

Further reading

Practical guidance on supporting communication and decisions when thinking changes

Further reading

Includes how assessment and support for thinking and behaviour usually work

Further reading

Practical tips for families on responding to changes in thinking and behaviour

Further reading

More detail on the kinds of change that can happen and why