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Frontotemporal Dementia (FTD) and ALS
Part of ALS Network
USIndependent publisher
This describes who publishes a source, not how reliable it is.
Open source (opens in a new tab)Link checked August 2026
About this source
ALS Network’s practical guide.
Where this source is used
Used in 9 places across 2 domains.
Questions
Medical Care
Thinking & Behaviour
- Can MND affect thinking, emotions, or behaviour?
Supports this
“Where changes in thinking or behaviour happen, they are caused by the disease rather than by anything the person or their family has done.”
Says the same thing from both directions: challenging new behaviours come from changes in the brain, so they are neither the person being deliberately difficult nor a sign that the family is doing something wrong. No quote is recorded because the sentence contains an em dash that the fetching tool renders as a hyphen, so its exact punctuation could not be confirmed.
- What can help, and how can family and carers respond?
Used across the whole answer
- What can help, and how can family and carers respond?
Qualifies this
“Changes in behaviour can be among the hardest parts of caring for someone with MND.”
Describes caring in this situation as very challenging, but is writing about frontotemporal dementia, which is the smaller and more severe group, rather than about behaviour change in MND generally.
Caring for people living with FTD can be very challenging.
FTD Treatment and Intervention - What changes might happen, and how common are they?
Used across the whole answer
- What changes might happen, and how common are they?
Supports this
“A smaller group of people with MND experience frontotemporal change or frontotemporal dementia, which affects behaviour, language and judgement more markedly.”
Describes frontotemporal dementia as affecting behaviour, personality and language, and estimates it affects about 15% of people diagnosed with ALS. Its symptom list includes poor judgement and impaired social skills.
Research over the past 30 years, however, has shown that some people diagnosed with ALS also experience some degree of frontotemporal dementia (FTD), a brain disorder that can affect behavior, personality, and language.
Frontotemporal Dementia (FTD) and ALS
Resources
Research & Trials
- Genetic Testing
Further reading
Explains the link between ALS and frontotemporal dementia, which can come up when families discuss inherited risk.
Medical Care
- Thinking & Behaviour
Further reading
For families facing more significant change, this explains frontotemporal change alongside ALS/MND and offers caregiver support strategies.
Thinking & Behaviour
- What can help, and how can family and carers respond?
Further reading
Caregiver-focused strategies for living with frontotemporal change alongside ALS/MND
- What changes might happen, and how common are they?
Further reading
What frontotemporal change alongside ALS/MND can involve, and support for families
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