Some people with ALS also have thinking, language or behavioral problems due to physical changes in the brain, which is called “Cognitive Impairment,” or CI. In some cases, problems may be so mild or subtle that they aren’t noticed by friends or family members, and don’t interrupt daily activities. For others, the changes in the brain are progressive, and symptoms become more noticeable over time. When symptoms are advanced, a person may be diagnosed with frontotemporal dementia (FTD), also called fronto-temporal lobar degeneration (FTLD) or Picks Disease. FTD means there is progressive damage to the temporal and/or frontal lobes of the brain.
Signs of FTD include a gradual, progressive decline in behavior and/or language (with memory usually relatively preserved). As the disease advances, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency on caregivers. It’s important to note that changes in behavior and thinking in FTD are the result of physical damage in the brain, and are not in a person’s control to improve.
There are several resources which can be a great help to families dealing with CI or FTD. We encourage you to explore the resources listed here as well as reach out to your ALS health care team for support and ideas for managing these changes.
ALS and Cognitive Changes: A Guide for Patients and Families
Behavioral Changes and Helpful Approaches with Cognitive Impairment
The Association for FrontoTemporal Degeneration (AFTD) is an excellent resource for families dealing with more advanced cognitive changes. This website includes:
Download-able booklets about FTD
How to talk to children and teens about FTD
Caregiver respite home health aide care grants
Local and phone-in support groups
Podcast episode 30: Judy Lyter and Travis Haines from Penn State Milton S. Hershey Medical Center join the ALS Podcast to discuss their surveys to screen for fronto-temporal dementia in persons with ALS. Their screening process will help guide better treatment, start the discussions on brain health and cognition earlier in the ALS journey, and provide comfort and resources to family caregivers.