A Frontotemporal Dementia Checklist for Family and Friends
Symptoms of brain-related disorders are often misunderstood. Frontotemporal dementia (FTD) is especially challenging. As a result of this disorder, family members and friends may sense that the person has changed, but they can’t put their finger on the cause. They may find that a person is being thoughtless or no longer cares about them. Resulting feelings of anger and sadness may lead typically supportive family or friends to distance themselves at a time when the person with the disorder needs them most. It is important to understand that people with these disorders cannot control their behaviors and other symptoms.
If your relative or friend is acting in a way that doesn’t seem normal to you, it could possibly be due to FTD. If they are exhibiting the symptoms below, help them find a local expert to test for frontotemporal disorders. Following are a list of symptoms that someone with FTD may be experiencing:
- 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 as needed or desired).
- Behaving in an embarrassing or unusual way such as when a person with an easygoing nature suddenly becomes aggressive, highly critical, or acts out in a way that is unusual for them.
- Acting out of sync with the situation or misreading social cues, such as laughing when hearing sad news or no reaction during a celebration.
- Repeating the same activity or phrase over and over, asking the same question repeatedly, despite receiving an answer.
- Compulsive eating like gorging on food, especially sweet and starchy foods like bread and cookies. Someone with FTD may take food from other people’s plates or may only want to eat the same food for every meal.
- Having difficulty 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 in, or initiation of an activity, especially ones he or she previously enjoyed. This can seem like depression, but people with apathy may not be sad.
- Lacking insight (anosognosia) into their behaviors that are quite obvious to others, as well as how they are affecting others around them. This lack of awareness is hard for caregivers to deal with because the person may reject efforts to help.
“Frontotemporal dementia (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” (UCSF Memory & Aging Center). 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 and friend caregivers to gain valuable information and compassion for their loved one and for themselves.
Family Caregiver Alliance
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Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research, and advocacy. Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues, provides assistance in the development of public and private programs for caregivers, and assists caregivers nationwide in locating resources in their communities. For San Francisco Bay Area residents, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease, and other debilitating health conditions that strike adults.
FCA Fact and Tip Sheets
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Other Organizations and LInks
National Institute on Aging (NIA)
University of California San Francisco (UCSF) Memory & Aging Center
This tip sheet was prepared by Family Caregiver Alliance. © 2014 Family Caregiver Alliance. All rights reserved.