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Understanding and Managing Dementia-Related Behavior Changes

By Julie Hayes | 08/16/2021

A caregiver comforting an agitated loved one

A loved one with dementia will experience many changes as the disease progresses. Though dementia is most commonly associated with memory loss, the changes dementia causes to the brain impact more than just memory—personality and behavior can be affected as well. We may feel that a loved one with dementia isn’t “acting like themselves” or that their actions might be “uncharacteristic.” Sometimes this can manifest in small ways, like being less alert than usual, or being more talkative around strangers. Other times, they may say or do something much more difficult to handle, like having an outburst of anger in public or making a sexually inappropriate comment. 

What causes behavior changes?

When someone has dementia, they lose important neurons in their brain. Neurons communicate information to each other through networks in the brain, and when those neurons are lost, the brain becomes unable to communicate information needed for certain functions, including the ability to retain short-term memories and to recognize and follow social cues. According to the Alzheimer’s Family Center, certain changes in behavior can indicate which part of the brain is losing neurons. The frontal temporal lobe, for example, controls impulse control and the ability to concentrate. Meanwhile, the temporal lobe helps us find words and clearly communicate needs.

When a person with dementia is not able to remember things, recall how to do basic activities or even communicate how they are feeling, their feelings of frustration, confusion and even embarrassment can translate into outbursts of anger or sadness. The behaviors we see as difficult or even embarrassing are more often than not a way to communicate a feeling or urge they are unable to communicate any other way.

How can caregivers respond to behavior changes? 

As a caregiver, you can prepare for these changes in behavior with a loved one’s physician and other family members. You may also want to talk to other caregivers who may be going through the same thing to share stories and ideas of how to handle these experiences. Additionally, consider the following tips:

1. Recognize that a loved one may be attempting to communicate. A loved one’s behavior may be in place of a need they can’t communicate or a feeling they can’t express. If they are behaving unusually, you may need to investigate if there is anything causing them distress or pain that you may not be aware of.

2. Consider what may be causing the situation. Outbursts can sometimes be unpredictable, but often they have a reason behind them, or follow an observable pattern. For example, a loved one may become distressed by the sound of sirens, or get angry when you bring them along on a grocery run. Realizing where and when outbursts take place, and what triggers the behavior, can help you avoid putting a loved one in that situation. 

3. Avoid large crowds. Large crowds can be unsettling for some individuals with dementia. If you can see your loved one becoming frustrated while in a mall or at a restaurant, consider leaving as soon as possible. If you can’t take them back home right away, take a walk with them to calm them down, or take them for a drive where they can listen to soothing music.

4. Be patient and communicate clearly and kindly. Yelling at a loved one or asking them a series of questions they may not be able to answer may only distress them more. When interacting with someone dementia, it is important to adapt your communication tactics by speaking simply, clearly, patiently and without arguing. To learn more about communication strategies, consider taking a Dementia Friends session.

5. Redirect. If a loved one is behaving inappropriately, attempt to redirect them to a different behavior, or towards a different location. For example, if a loved one is touching themselves inappropriately in public, redirect their attention by having them hold something, or asking them to help you with something, like pushing a shopping cart or picking out ingredients. Or, have them go somewhere more private, like the bathroom or your car, until they’ve stopped or calmed down. 

6. Communicate the situation to others present. If a loved one is speaking or acting in ways that may seem inappropriate to others present, these observers may not understand what is going on unless you tell them. Explain your loved one’s condition and ask for their understanding, or consider carrying “awareness cards” with you that explain that your loved one has dementia. If a loved one is given these cards as well, they can also double as an emergency contact notification if you include your information and phone number on the back.

7. Be understanding. Your loved one might be embarrassed about the situation as well. Acknowledge that feeling and tell them how much you love them. Empathy, preparation and assistance can go along way in making outbursts more manageable.

This article was written for the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, a grant funded by the Administration for Community Living (ACL) . Learn more here.    


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