Supporting people affected by cognitive change and FTD

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.

Being alert to the possibility of cognitive and/or behavioural change at any stage of MND can be valuable, as these changes may have an impact on service use and decision making.

Management of people who show signs of cognitive impairment should focus on forward planning and organising appropriate support strategies for them and their families/carers.

Professionals who can support

If cognitive change has been identified, it is important to alert all members of the multidisciplinary team, allowing them to react and implement any changes needed in care planning.

If the person is not already in contact with them, it may be useful to refer to occupational therapy (for strategies and equipment to manage activities of daily living) or speech and language therapy (for strategies and equipment for communication).

The following services may be referred to for home support:

  • GP
  • palliative care team
  • community mental health team
  • old-age psychiatry services
  • young-onset dementia services
  • local multidisciplinary team.

Advance care planning

Many people living with progressive illnesses such as MND fear losing control and not being able to make their own care decisions. Discussion of advance care planning is recommended, particularly if cognitive change is identified.

Supporting carers and family members

Supporting carers is vital. Their individual needs may be complex depending on the severity of cognitive and/or behavioural change in the person with MND.

Cognitive and behavioural change is a symptom for which many carers feel unprepared, especially as many people will not have been told that this can occur as part of MND. Clear explanations and instruction can help. The needs of carers and family members should be assessed and support strategies advised.

A clear and detailed care plan is essential, so the carer feels supported and reassured that they have been listened to and that instructions are consistent and sensitively understood.

Aggressive behaviour

Professionals must be aware of the risks to carers and family where behavioural changes include aggression.

A combination of lack of empathy and self-seeking behaviour may lead to carers and family or the person themselves being in danger, especially if the person has retained mobility. Situations such as these will be challenging for professionals, as well as carers, and day-to-day management must be considered.

Find out more

More information about cognitive change and FTD can be found in our booklet for health and social care professionals:

• Cognitive change, frontotemporal dementia and MND

Contact MND Connect if you have any questions about MND and supporting people with the condition.

Other useful resources

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262