Cognitive Symptoms in ALS: A Caregiver's Role

by Amy Madsen on Tue, 2011-11-01 10:00

Editor's note: This is part of a larger story about the science and effects of frontotemporal dementia (FTD) in ALS. For more information, see When the Thinking Parts of the Brain Go Awry in ALS.


Families can deal with the cognitive and behavioral changes associated with frontotemporal demenia (FTD) by making modifications to the environment (i.e., keeping certain items in designated locations, and using calendars or notes to organize information), and by carefully describing all symptoms to health care providers and medical professionals.

It’s important to help people with ALS and FTD to make medical care and end-of-life decisions — and legally document them — as early as possible. This helps to avoid difficulties later when they may be physically or legally unable to make such decisions on their own.

Caring for someone with the physical symptoms of ALS is a big job, and when FTD symptoms also are present, caregivers may feel even more overwhelmed. In addition to experiencing chronic depression, caregivers often report feelings of frustration, anger, guilt and anxiety.

Caregivers should not hesitate to speak with their loved one’s ALS physician about their situation. They also should seek support from family members and an ALS support group, such as those offered by MDA in local communities, on the telephone and online.

For help locating a support group or to learn about other resources that may ease caregiver stress and burden, contact your local MDA office at (800) 572-1717.

Amy Madsen
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