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A Frontotemporal Dementia Checklist for Family and Friends

Here's a list of behaviors that may be due to FTD

By Leah Eskenazi and Family Caregiver Alliance

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. 

Leah Eskenazi, MSW, is the director of operations for the Family Caregiver Alliance, whose mission is to improve the quality of life for caregivers through education, advocacy, research, service and support. She has more than 25 years of experience advising caregivers, their families and professionals providing their care. Read More
By Family Caregiver Alliance

MissionFamily Caregiver Alliance is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.    Who We Are Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. Long recognized as a pioneer in health services, the alliance offers programs at national, state and local levels to support and sustain caregivers.National, State and Local Programs Uniting research, policy and practice, the alliance established the National Center on Caregiving to advance the development of high-quality, cost effective programs and policies for caregivers in every state in the country. The National Center on Caregiving sponsors the Family Care Navigator to help caregivers locate support services in their communities. Family Caregiver Alliance also oversees Link2Care, an Internet support and information system for clients of California's system of Caregiver Resource Centers and operates the Bay Area Caregiver Resource Center in the six-county San Francisco Bay Area. In that capacity, the alliance's staff social workers work closely with families caring for ill or elderly loved ones. Our services, education programs and publications are developed with their expressed needs in mind, to offer real support, essential information, and tools to manage the complex and demanding tasks of caregiving.

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