Management strategies for 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.
These guidelines, created by Professor Sharon Abrahams, may help identify and manage what can be disturbing changes for people with and affected by MND.
- Remember that difficulty processing information, making decisions and/or behaviour problems may be a result of cognitive change.
- If cognitive change is evident, this may interfere with informed decision-making and learning to use new equipment or new routines.
- Where cognitive change is evident, use simple and straightforward language, with closed rather than open questions in order to communicate clearly and directly.
- Consider whether cognitive change is causing a problem. Look at particular areas, for example work, home or relationships.
- Be aware that some people will have severe cognitive problems, some very mild and many will have no cognitive problems.
- Reduced activity and fewer demands on effective cognitive functioning, for example if the person has stopped working or has increased reliance on others, may mean that cognitive change affects them less profoundly.
- ensure that decision-making is not taken away, but supported: provide an appropriate level of help with decision-making processes and to ensure informed consent
- break down complex information into smaller chunks
- take time to ensure thorough understanding at each step
- take time to check there is understanding of consequences of each action or decision.
Also: capacity issues should be assessed where FTD is evident.
For simpler decision-making:
- limit choices to one or two alternatives
- do not use open-ended questions. Instead, ask questions that require yes or no answers.
- encourage them to stop and think
- reduce the cognitive load by breaking down the task into small steps
- use verbal/non-verbal prompts to help at each step, or try to refocus attention or show them what to do.
Help to problem-solve by:
- refocusing attention on relevant issues
- helping them to monitor their own performance
- helping to provide feedback
- encouraging plenty of practice to reinforce the steps required.
Also: consider implications for introducing new equipment and communication aids.
- supervise activities. People may make decisions too quickly, without remembering to be careful or to use safety equipment. Encourage them to stop and think
- suggest organisation aids, such as calendars, diaries or reminders.
- encourage non-verbal responses, such as pointing
- try modelling the behaviour you are trying to encourage, eg demonstrating the task.
Also: consider the implication of language problems on provision of appropriate communication equipment.
- they are likely to have difficulty initiating activities
- use visual or verbal cues to prompt activity
- aim for a structured routine.
- help to refocus on a new task
- encourage a calm, structured and orderly environment
- explain the problem to the carer/family in terms such as: ‘Mrs X has difficulty shifting her attention away from an activity once she has started. She will continue to do the same activity even though it is no longer appropriate to the situation. She may appear to be stubborn or not listening properly, but this is due to a problem in her thinking’.
- focus on one activity at a time
- engage interest and remove distractions
- break down tasks into discrete steps
- use verbal and non-verbal prompts to refocus attention or show what to do
- minimise interference.
- supervise the person’s eating more closely
- people with more severe changes may place too much food in their mouth at one time and cram food, while others may eat more food than they need
- limit the amount of food on the plate at one time
- ask the carer to model eating at an appropriate pace
- if food cravings are noticeable, question how much of a problem the behaviour is causing. It may be helpful to discuss with a dietitian.
- those with poor swallowing may have trouble following medical advice to modify consistency or to thicken drinks
- refer to speech and language therapy for assessment and advice about how to encourage safe eating, eg using the chin-tuck technique, counting to 10 when swallowing
- repeated reminders about swallow safety tips may be necessary
- ensure that mealtimes are protected from any distractions.
- those affected by cognitive change may have trouble distinguishing facial expressions
- support the carer/family in understanding the reasons behind what appears to be an inappropriate/uncaring response
- advise the carer/family that they should express their feelings verbally and as explicitly/simply as possible
- recommend that they check understanding and repeat as necessary.
Also: the person’s own face may become less expressive. If behaviour is apathetic, there may also be increased problems in recognising what the person is feeling or requires. In this situation, it is important to take note of more intuitive signs of distress, eg body positioning, unusual or new behaviour, movement or non-verbal sounds.
- support carer/family in understanding the reasons behind apparent selfishness and explain that this is a problem in the person’s thinking
- explain this is not personal
- encourage extra support and regular respite.
If socially inappropriate behaviour is evident (eg laughing, loss of control, sexually disinhibited comments):
- explain to carer/family that this is part of the disease, to foster understanding and support
- explain that studies have shown reduced understanding of emotion and social situations
- there may be misinterpretation of other people’s expressions, for example, difficulty recognising the difference between happy and surprised facial expressions
- there may be difficulty in understanding the emotions and thoughts of others
- support the carer/family with strategies to refocus/redirect attention and to deal with aggressive behaviour
- seek help from psychiatric services if challenging behaviour emerges.
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.