Frontotemporal Dementia (FTD) & ALS |
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Though ALS is most known for affecting muscles and movement, it can also affect the mind. Up to 50% of people diagnosed with ALS can experience some form of cognitive or behavioral impairment.
For most, this means gradual and subtle changes in thinking and behavior. However, up to 15% of all people living with ALS will experience the more noticeable symptoms of frontotemporal dementia (FTD). |
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What does FTD look like with ALS?
People diagnosed with FTD experience impairments to their thinking and behavior. These changes usually appear gradually after physical symptoms begin, though they can also appear first. Although FTD includes the word “dementia,” the person’s memory is not usually affected. There is no treatment for FTD.
Symptoms of frontotemporal dementia include:
People affected by FTD may not be aware of these changes to their thinking and behavior.
Symptoms of frontotemporal dementia include:
- Behavior that is inappropriate, inconsiderate, or out of character
- Anger or irritability
- Impulsivity
- Self-centeredness
- Mental rigidity
- Poor judgment
- Impaired social skills
- Distractibility
- Repetitive behaviors
People affected by FTD may not be aware of these changes to their thinking and behavior.
What do the mild-to-moderate forms look like?
More subtle behavioral changes can be hard to detect. Loved ones may be the only ones who notice things like increased irritability, poor judgment, decreased motivation, and out-of-character behaviors.
Some ALS clinics have the ability to do neuropsychological and other testing that can detect changes to the brain. Observations from family members can also help doctors diagnose more subtle cognitive and behavioral changes.
Some ALS clinics have the ability to do neuropsychological and other testing that can detect changes to the brain. Observations from family members can also help doctors diagnose more subtle cognitive and behavioral changes.
What does this mean for family members and caregivers?
Life expectancy can be shorter for those with FTD and more subtle impairments, possibly because these individuals are less likely to comply with recommended treatments. When executive functioning in the brain is affected, it can be hard to think clearly, make plans, and follow directions.
If your loved one is not thinking as clearly as before, and is open to your assistance, you can help by scheduling ALS clinic visits, taking notes, communicating with the medical team, and following through on their recommendations.
You may also want to take a greater role in helping your loved one make important medical and end-of-life decisions, ideally sooner rather than later.
Remember that challenging new behaviors may be due to changes to the brain—and not because your loved one is trying to be difficult. Understanding this may help you have more patience and take some things less personally.
If your loved one is not thinking as clearly as before, and is open to your assistance, you can help by scheduling ALS clinic visits, taking notes, communicating with the medical team, and following through on their recommendations.
You may also want to take a greater role in helping your loved one make important medical and end-of-life decisions, ideally sooner rather than later.
Remember that challenging new behaviors may be due to changes to the brain—and not because your loved one is trying to be difficult. Understanding this may help you have more patience and take some things less personally.
