Initially, it was thought that motor neuron
disease (MND) only affected the nerves we use to control our muscles. However,
we now have much more knowledge and understanding of the changes in the brain
that can affect thinking, emotion and behaviour in some people with MND. We
describe these changes as cognitive and behaviour change.
This leaflet aims to help your understanding
of cognitive and behaviour change in MND and offers useful information about
the support available for you and the person you care for.
What does cognitive change mean?
Cognition refers to a range of brain
functions that include the ability to learn
and remember, think through and plan activities, concentrate and carry
out tasks, and understand what we see
and hear. Cognition also includes verbal
communication, such as the ability to say words, interact and
respond appropriately to other people.
With regard to cognition, people living
with MND appear to fall into one of four
groups: • No cognitive
change
• Subtle cognitive and behaviour
change
• Severe cognitive and/or behaviour change
where the person develops frontotemporal
dementia (FTD)
• People with FTD who go on to develop
motor impairments where MND is
diagnosed after dementia.
Some people experience very mild changes,
whilst others may experience changes
that are more noticeable. FTD is a
type of dementia involving severe cognitive and behaviour change. Around 5% of
people with MND will develop FTD. This type of dementia is different from Alzheimer’s disease, the most
common type of dementia.
The effects of cognitive changes
Cognitive changes can appear in a variety
of forms. Some people find it difficult to:
• Concentrate, eg when reading or dealing
with household bills
• Learn new activities or use new
equipment
• Start conversations
• Hold a conversation if background
distractions are present
• Plan ahead or manage a sequence of
activities
• Start activities or tasks
• Finish tasks through to conclusion
• Do more than one thing at a time, eg
ironing while watching television
• Know how to respond to people in social
situations
• Find the names of items that they would
have previously known
• Understand complex sentences.
Some behaviour changes may result in
people:
• Feeling restless
• Lacking drive or initiative
• Acting impulsively without thinking
things through
• Eating lots of sweet things and cramming
food
• Becoming fixated on one activity or
routine
• Lacking empathy and appearing
indifferent, eg when you or someone
else close to the person with MND is distressed.
Social awareness and loss of insight
There may be loss of insight, ie the person
affected may not be aware of changes
going on. This can be distressing for everyone close, eg family members, especially if they have noticed
changes in behaviour. Because you
are caring for the person with MND, you are likely to be the first to notice changes in their behaviour. This
can be really confusing and upsetting
and you may wonder what the cause might be, eg could it be MND, depression, frustration or fatigue?
Therefore, it is important to rule out
other possible causes that can also affect
the ability to concentrate and function. For example changes in
breathing, or the presence of an
infection.
What else could it be?
Mood
It is only natural that adapting to changes
caused by MND may lead to changes in
mood. Many people with MND will experience feelings of frustration and upset.
For a small number of people these feelings
can be overwhelming and as a result,
they become depressed.
If someone finds it difficult to engage
with a task or concentrate on things, it
may be due to feeling low, rather than cognitive change. Some people may
choose to take certain medication when they feel like this, eg anti-depressants
or they may seek conselling.
Emotional lability
Some people with MND experience ‘emotional
lability’. This can result in uncontrollable laughter or crying in response to
something that is only moderately funny or sad, for example, a television
programme. This can seem inappropriate at times and cause fusion.
Breathing
If MND is affecting breathing, it can
affect sleep quality. This can cause changes in concentration and memory.
If a ventilator is being used to help
breathing, it is important to check the setting and make sure the ventilator is
working properly.
Infection
Chest or urine infection may lead to
confusion or muddled thinking. It is important to noted that this would be a
more rapid onset accompanied by signs of infection e.g. a high temperature,
feeling unwell.
Who can help?
If you recognise the changes described in
this leaflet or have any concerns, we
encourage you to contact your GP or a member of the health team providing care and support. This will enable
them to understand more about what
these changes are, the effect they are having and the impact on you and other members of the family.
Knowing that cognitive change is part of
MND can often come as a relief to those
who have noticed changes in thinking and behaviour since diagnosis. Seeking advice, support and information is
important, for everyone in the
family. Because MND is
uncommon, your GP may not be familiar with these symptoms in relation to MND.
It may be helpful to show this l leaflet to
your GP so your GP can see the source
of information you have read. Whilst awareness of cognitive change in MND is increasing, not all GPs will
necessarily have experience in this
area.
You can also contact MND Connect to talk
through any concerns you have (Please
find contact details at the end of the leaflet).
What will happen next?
The GP or member of the health team may
advise an assessment. This will help
identify the cause and suggest ways to minimise any confusion and frustration that may exist. They will also
offer practical suggestions to overcome
some of the everyday difficulties.
They may offer helpful advice for you and other family members about
the sort of questions to ask, eg asking
questions that require yes or no answers
and avoiding complex sentences that require a lot of explanation.
A variety of options will be considered to
help simplify communication and daily
tasks. The aim is to help the person affected feel more in control. This can also be beneficial to you and other
family members.
Enabling everyone close to understand the
cause of behaviour changes may empower,
support and help them to care more confidently.
The management of people with MND affected
by cognitive impairment is about
forward planning and helping to organise appropriate support for them and their
families/carers.
An Advance Decision to Refuse Treatment
(ADRT)
An ADRT (previously known as a Living Will)
is a decision someone can make in
advance to refuse specific treatments in certain circumstances in the future. This can include the right to refuse
life sustaining treatment.
Many people living with progressive
illnesses such as MND fear losing
control and not being able to tell healthcare professionals their
decisions themselves.
An ADRT tells people about those decisions
and becomes active when the person
loses the ability to make decisions. For many people, an ADRT can give them peace of mind and may be
especially important if severe cognitive
change becomes evident.
To find out more information about ADRTs,
contact the MND Connect team or visit
the MND Association website to access our ADRT publications (see the end of
this sheet for contact details).
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