Cognitive Changes with ALS

There is a wide range of cognitive changes that ALS patients may experience. In some cases, patients have more severe problems. It is important to know that cognitive changes with ALS are due to degeneration of brain cells and not a psychiatric illness.

Symptoms of Frontotemporal Lobe Dementia (FTD)

The main symptoms of cognitive impairment and FTD have to do with behavior, personality, and thinking. These symptoms develop over time. Examples of changes are:

Decreased sensitivity to others needs
Increased aggression
Behavior that is embarrassing, inappropriate, uncharacteristic, or childish
Withdrawn
Requiring redirecting to do daily activities
Altered behavior (such as eating lots of sweets or stuff food in their mouth)
Fixation on one idea or activity
Difficulty making appropriate decisions
Difficulty solving problems with several steps
Poor performance at work

Recommendations for Care and Support

Patients with ALS and FTD face challenges related to thinking and are not able to understand what is happening. Family members may interpret cognitive changes as frustration or anger with the illness or the caregiver. Understanding FTD can sometimes be a relief to family/caregivers because it can explain problems they are experiencing. Here are some tips to help:

Remember that patients cannot “fix” the problem by trying harder.
Family and caregivers are not to blame
Do not assume that reasoning, explaining, or convincing will change the patient’s mind
Communicate clearly and directly in simple words
Supervise the patient’s eating; those with impaired swallow may have trouble following medical advice
Build a calm and comfortable atmosphere with structure
Supervise walking and activities
Talk frankly with healthcare providers about symptoms, possible treatments, and ways to help the patient
As a family member and caregiver, get support or counseling. Take care of yourself!

By Providence ALS Center