Are There Cognitive and Behavioral Changes with ALS?
In the past, amyotrophic lateral sclerosis (ALS) was not believed to cause any changes to the way a person thinks or behaves. Doctors thought only muscle control and breathing were affected. The truth is that cognitive and behavioral changes were observed and documented as far back as the 1800s. However, in the last 10 to 15 years, doctors and researchers have come to realize that many people with ALS experience cognitive and behavioral changes. Experts estimate that as many as 50 percent will have some changes. Knowing that these changes can occur helps family caregivers and senior care providers be prepared for dealing with them.
Changes That May Occur.
The changes that occur are believed to be caused by degeneration in the frontal lobe of the brain. How ALS affects the thinking and behavior of an individual varies. Around 25 percent of those who have cognitive and behavioral changes will develop frontotemporal dementia (FTD), which the ALS Association describes as “full-blown dementia.”
Some of the signs that an ALS patient is experiencing cognitive or behavioral changes include:
- Doesn’t think before speaking, i.e. they’ve lost their “filter.”
- Changes in eating habits, like eating just one kind of food and ignoring a balanced diet or a loss of table manners.
- Less attention to personal hygiene.
- Decreased reliability in yes and no answers. For example, they say “no” when they mean “yes.”
- Inability to follow instructions for activities such as physical therapy exercises.
- Poor judgement skills, or an abrupt change in judgement in comparison to past behavior.
- Knows the word they want to use, but cannot speak it during conversation.
- Stuck on one idea or activity and repeating it.
- Using or writing words in the wrong order.
Dealing with cognitive and behavioral changes can be hard for family caregivers and senior care providers. This is especially true for family caregivers who are used to the person they knew before ALS. There’s little use in trying to point out to the person that they have changed—it only leads to arguments and hurt feelings. The person likely cannot see that they have undergone these types of changes. Instead, try using some of these strategies to manage the changes:
- Keep distractions to a minimum during communication. For example, if the person with ALS is trying to compose an email, turn off the television or radio.
- Stay organized. Keep items that are used often, like the television remote, in consistent places.
- Encourage doing just one thing at a time instead of trying to multitask.
- If the person gets stuck on one idea or activity that is upsetting them, use a distraction. Offer a snack, go for a walk, or do some other activity the person enjoys.
If an older adult in your life has ALS, hiring a senior care provider can help them stay at home longer and assist family caregivers with the day to day tasks involved in caring for a person with a severe condition. Senior care providers can help with dressing, toileting, eating, and grooming. They can also help the person when they are having problems with cognitive changes, such as by providing a distraction when the person is upset or helping them to complete tasks that may be difficult due to cognitive issues.
If you or an aging loved one are considering hiring senior care in Monroe, NJ or the surrounding areas, please call Independence Home Care today at 609-208-1111 for more information.