Cognitive and behavioural changes are increasingly recognised as part of MND. These changes can affect thinking, behaviour, communication and decision making.
In some cases, people with MND may develop frontotemporal dementia (FTD), which can have a significant impact on how they understand, process and respond to information.
Recognising these changes is important to support communication, decision making, and person centred care.
On this page you will find:
- how cognitive and behavioural changes may present
- how this may affect care and communication
- what to consider in practice
- further guidance and resources.
Understanding cognitive and behavioural changes
Cognitive and behavioural changes occur in a proportion of people with MND. These can range from mild difficulties to more significant impairment.
Changes may include:
- difficulties with attention, planning and problem solving
- reduced insight or awareness of difficulties
- changes in behaviour, such as apathy, disinhibition or loss of empathy
- changes in social conduct or personality.
In some cases, these changes meet the criteria for frontotemporal dementia (FTD).
Not everyone with MND will experience cognitive change, but it is important to be aware of the possibility.
How this may present in practice
Cognitive and behavioural changes can be subtle and may be mistaken for emotional responses or fatigue.
You may notice:
- changes in how the person engages in conversations
- difficulty following information or making decisions
- reduced motivation or withdrawal from usual activities
- responses that seem out of character.
Family members or carers may notice changes before the person themselves.
These changes can affect how the person understands information, expresses preferences, and participates in care.
Impact on communication and decision making
Cognitive and behavioural changes can affect:
- the ability to understand and retain information
- decision making and insight
- communication, including expressing needs and preferences.
This can have implications for:
- advance care planning
- consent and capacity
- involvement in decision making.
Approaches may need to be adapted, for example:
- giving information in smaller amounts
- allowing more time for processing and response
- checking understanding regularly
- involving family members or carers where appropriate.
What to consider in practice
Be aware of the possibility of cognitive or behavioural change in people with MND, even where this is not immediately apparent.
- consider whether changes may be affecting communication or decision making
- involve the multidisciplinary team, including neurology and specialist services
- consider referral for further assessment where appropriate
- support family members or carers, who may be affected by changes in behaviour.
Where there are concerns about capacity, follow local policy and legal frameworks.
Further guidance and resources
Cognitive change and dementia in MND guide for professionals
Cognitive change training film
Information on cognitive change for people with or affected by MND
You can find further guidance on communication, symptom management and support across the Management of MND section.
Page last updated: April 2026
Next review: April 2029