Understanding & Managing Agitation in FTD

One of FTD’s hallmark symptoms is difficulty communicating. FTD causes atrophy in the frontal lobe of the brain, which includes the area responsible for speech production and articulation. People with FTD can become agitated when trying – and struggling – to communicate the way they used to. When people are unable to efficiently communicate their feelings or their needs, they instead become outwardly frustrated. The gradual loss of autonomy and ability that follows an FTD diagnosis compounds these feelings of agitation.

Recognizing that displays of agitation in FTD are often simply a person struggling to express themselves allows caregivers and care partners to better resolve the situation. Sometimes, agitation is the result of a person trying to explain that a basic need of theirs – for food, for water, or for sleep, for example – is not being met. Other times, the need can be more complex – for example, a need for a sense of belonging that has gone unmet since their diagnosis.

There are many ways to try to determine what the person diagnosed is attempting to communicate. Care partners may benefit from using their detective skills and investigating what is happening by asking themselves a series of questions. How would you characterize the behavior that the person diagnosed is displaying? What about the location or environment where is it occurring? Is something specifically triggering this behavior? What might the person diagnosed be feeling? Are their basic needs being met?

For example: Does the person diagnosed lash out every time someone tries to assist them with using the restroom? As their care partner, you may recognize that they need assistance toileting; but for the person diagnosed, being accompanied to the bathroom may signal something else. Realizing that they are losing the ability to use the restroom by oneself can be extremely difficult, especially if they realize that it portends additional loss to come. Care partners should recognize that when their loved one lashes out at them, the anger is not directed toward the care partner, but is rather due to frustration at losing their own autonomy.

From there, the care partner can approach the situation in a new way and consider how to maintain the dignity and autonomy of the person diagnosed. Consider clothes that are easier to pull on and off, or installing a bar in the bathroom to make the using the bathroom easier. Consult with your primary care physician to see if there is an undiagnosed medical reason that would specifically make using the bathroom a source of consternation. By recognizing why the behavior is occurring, care partners and persons diagnosed can work better together.

Agitated behaviors in FTD are a symptom of the disease and not the person. Understanding FTD, and preparing to investigate why the person diagnosed is lashing out, can set up both care partners and their loved ones for success.

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