A Frontotemporal Dementia Checklist for Family and Friends

Symptoms of brain related disorders are often misunderstood, and that’s especially true in Frontotemporal dementia (FTD). Early on, family members and friends sense a change but can’t pinpoint the cause. They often feel their loved one is being thoughtless or no longer cares about them. As a result, they may distance themselves when help is most needed. It is important to understand that people with these disorders cannot control their behaviors or symptoms.

If your relative or friend is acting in a way that doesn’t seem normal to you, maybe it’s due to FTD. If they are exhibiting the symptoms below, help them find a local expert to test for FTD:

• Trouble thinking through a sequence of steps (what comes first, second, third and so on) and prioritizing those steps.
• Multitasking becomes challenging when they could do so previously (managing more than one activity at a time, shifting from one to another needed or desired).
• Behaving in an embarrassing or unusual way such as when a person with an easygoing nature suddenly becomes aggressive.
• Acting out of sync with a situation or misreading social cues such as laughing when hearing sad news or no reaction during a celebration.
• Repeating the same activity or saying the same word over and over.
• Compulsive eating like gorging on food, especially sweet and starchy foods, like bread and cookies. People may take food from other people’s plates and may want the same food for every meal.
• A hard time resisting impulses to use or touch objects. For example, grabbing someone else’s car keys or eating fruit at the grocery store before it is purchased.
• Language difficulty either in using and understanding words (Aphasia) and/or in the physical ability to speak (Dysarthria).
• Appearing apathetic, showing an unusual lack of interest or initiation of an activity, especially ones they previously enjoyed. This can seem like depression, but people with apathy may not be sad.
• Lacking insight (Anosognosia) about what is so apparent to others about their behavior and how they affect others. This lack of awareness is hard for caregivers to deal with because the person may reject efforts to help.

According to the UCSF Memory and Aging Center, FTD is a group of related conditions resulting from the progressive degeneration of the temporal and frontal lobes of the brain. These areas of the brain play a significant role in decision-making, behavioral control, emotion and language.

Fortunately, there is growing awareness of this devastating disease. Early detection can help the person living with the disorder to find treatment sooner. A diagnosis will hasten the ability of family, friends and caregivers to gain valuable information and develop much-needed compassion for their loved one and for themselves.

Leah Eskenazi, MSW, is Director of Operations for Family Caregiver Alliance, a nonprofit organization addressing the needs of families and friends providing long-term care for loved ones at home.