Many behaviors caused by FTD, such as aggression, disinhibition, delusions, and apathy, are challenging and distressing for people diagnosed and care partners. Such behaviors often result from an unmet need, negative emotions, anxiety, or pain. Complicating matters, these behaviors – and their triggers – will change as the disease progresses.

However, with patience and a little detective work, care partners can identify the causes of certain behaviors by documenting them and noting when, how, and why they occur. This documentation will help mitigate stressors for the person diagnosed and will also help your care team, giving them a deeper understanding of specific behaviors and allowing them to suggest ways to cope.

To get started, find a medium for documenting behaviors. AFTD has developed an FTD Behavior Tracker to help care partners more easily accomplish this. The tracker also highlights best practices for documenting behaviors as they change. Or, if you prefer, you can track changing behaviors using a journal, a notetaking app, or a word processor like Microsoft Word or Google Sheets – whatever works best for you.

When documenting behaviors, consider the following factors:

• WHO was present when the behavioral incident occurred: family, friends, care partners, strangers?
• WHAT was the specific behavior that took place? Describe as fully as possible.
• WHEN does the behavior occur? Does it appear to recur at a specific time of day?
• WHERE did the behavior take place: at home, at a friend or family member’s house, in public, in the car?
• WHY did the behavior seem to take place? Based on the above information you’ve already recorded, what appears to be the most likely trigger? Was it a reaction to a specific person, place, or emotion (such as fear, anger, or simply overstimulation)?
• ASK friends, family, and any other care partners if they have noticed any behavioral changes. You may find they have seen something you didn’t or were present during a behavioral incident you were not around for.

Note that not every behavioral change or incident will be attributable to a specific trigger. Because FTD affects the regions of the brain responsible for regulating behavior, disinhibition is common, and incidents may not always be in reaction to an unmet need or stressor.

If you find yourself stumped by a behavioral change or a recent incident, AFTD’s HelpLine can provide you with guidance and resources to address it. Contact the HelpLine at 1-866-507-7222 or info@theaftd.org.