Assessing cognitive and behavioural change
Some people with motor neurone disease (MND) will experience changes in thinking, reasoning and behaviour. For many people the changes will be subtle and have little or no effect on daily life, but a small number of people will develop frontotemporal dementia and need additional support.
The importance of timely assessment
Understanding the level of cognition of the person with MND is crucial to help them and their family to cope with what may lie ahead, including being able to make timely decisions about treatment and care.
The family may experience relief when cognitive and behavioural changes are professionally acknowledged, and the relationship to MND is properly attributed and explained.
Assessments can lead to suggestions of how to help minimise any confusion and frustration that the changes are presenting. Any management of changes in cognition and/or behaviour should always involve the person with MND, together with their family and carers.
Methods commonly used by professionals include:
- functional assessment
- standardised screening measure of cognition and behaviour
- informant-based behavioural questionnaires
- assessment according to current criteria for MNDbi (behavioural impairment), MNDci (cognitive impairment) and MND-FTD.
A formal, detailed assessment should be undertaken by a clinical neuropsychologist where available.
The Edinburgh Cognitive and Behavioural ALS Screen (ECAS) tool has been designed specifically as a first step in assessing the presence of cognitive change in MND. The tool is designed to take 20 minutes to complete by any health or social care professional, including non-neuropsychologists. It can be used to screen people to see whether they would benefit from a full neuropsychological assessment.
The MiND-B is a simple tool for the identification and quantification of behavioural symptoms in ALS. It measures three behavioural domains: apathy, disinhibition and stereotypical behaviour.
The M-ACE is a brief and sensitive cognitive screening tool for dementia. Unlike the ECAS tool, it is not specific to MND.
Assessment methods commonly used by clinical neuropsychologists include:
- detailed cognitive assessment – this involves a person completing a series of tasks that assess their cognitive abilities. Assessments may include tests of memory, executive functions, language and visuoperception (eg planning, generating and inhibiting responses, understanding sentences and word finding)
- questionnaires – carers may be asked to rate the person’s behaviour and the presence of emotional lability. People with MND may be asked to rate their own mood in an attempt to gain an accurate picture of psychological factors involved.
Find out more
More information about cognitive change and FTD can be found in our booklet for health and social care professionals:
Contact MND Connect if you have any questions about MND and supporting people with the condition.