Navigating Challenging Behaviors in Alzheimer’s Disease: How to Talk to Your Doctor and Care Team

This article is for people who have Alzheimer’s disease and their care partners, or anyone who wants to learn more about challenging behaviors in Alzheimer’s disease. The goal of this activity is to help you and your care partner talk with your doctor about agitation in Alzheimer’s disease.

You will learn about:

• Behavioral symptoms, including agitation, in Alzheimer’s disease

• How challenging symptoms and behaviors affect the quality of life for both the individual with Alzheimer’s disease and their care partner

• How and when to talk with your doctor and healthcare team about agitation in Alzheimer’s disease

• Questions to help you start the conversation with your doctor about challenging behaviors in Alzheimer’s disease

Alzheimer’s disease is a condition that affects the parts of the brain that control:

• Memory

• Thought

• Language

Alzheimer’s disease and its symptoms generally occur in stages, starting with mild cognitive impairment (MCI). Right now, there isn't a cure for Alzheimer's disease, but there are things that can help manage some of the symptoms.

It’s important to talk with your doctor about all symptoms you or the person you are caring for is experiencing.

In addition to changes in memory and thinking, there can also be behavioral and psychological symptoms. Examples of these include:

• Agitation (feeling upset)

• Trouble sleeping

• Having delusions and hallucinations (believing things that didn’t happen or seeing things that aren’t there)

These symptoms can be very upsetting to both you and your care partner. But there are ways to help.

When someone feels upset, which is called agitation, they can show it in different ways. Agitation can happen verbally (with words, like yelling) or physically (with actions, like pacing back and forth or hitting). It can be aggressive, which means it might be hurtful to others, or nonaggressive, which means it isn’t hurtful to anyone.

Your doctor can help you investigate the agitation and see if the Alzheimer’s disease is it.

The International Psychogeriatric Association (IPA) defines agitation in Alzheimer’s disease as meeting these 4 main criteria:

#1

The person has a cognitive condition or dementia  (like Alzheimer’s disease)

#2

The person has at least 1 of these behaviors :

  - moving around a lot (ex: pacing, rocking, pointing fingers)

  - verbal aggression (ex: shouting, swearing, screaming)

  - physical aggression (ex: pushing, hitting, throwing things)

AND

the behavior is associated with feelings of distress (discomfort), has been happening for at least 2 weeks , and is not normal behavior for the person

#3

The behavior is so serious that it can make it hard to get along with others , have friends , and/or be able to do everyday activities

#4

Other reasons for the agitation have been excluded (ex: another medical or psychiatric condition or the effects of a substance, like wine or unprescribed drugs)

It’s important to recognize the symptoms of agitation and talk with your doctor about any behavior that is not normal.

Dealing with agitation can be upsetting, distressing, and harmful – both for you and your care partner. It can be hard to handle everyday activities, but there are things that can be done to help. Watch this short video for a real-life story.

First, it’s important to talk with your doctor and check for other things that may be causing the agitation. If the agitation is part of the Alzheimer’s disease, there are ways to help ease the symptoms without medicine. Usually, these strategies are tried first. These can include:

• Care partner training

• Making changes to the living environment (ex: to reduce noise)

• Creating memory aids (ex: a card that has important information written on it)

• Activities like music, dance, and animal therapy

• Getting the help of a healthcare worker

There are also medicines that may help if symptoms get worse or put you in danger. Medicines can include:

• Anticonvulsants (used off-label for agitation)

• Antidepressants (used off-label for agitation)

• Antipsychotics (used off-label for agitation)

• Brexpiprazole (atypical antipsychotic) (FDA-approved for agitation)

All medicines can have possible side effects. Sometimes the side effects can be serious. Just like with any medicine you should talk with your doctor about the risks and benefits and be monitored by your doctor. While taking medicine, it’s important to keep using the other methods that don’t involve medicine.

If you or the person you’re caring for has Alzheimer’s disease, it’s important to recognize any changes in behavior and talk with your doctor right away. There are ways to help and to improve the quality of life for both of you.

• How do I know if a behavior is connected to Alzheimer’s disease?

• Are there any medical tests that should be done?

• Is there anything we can do about the behavior without relying on medicine?

• What medicines are available for agitation with Alzheimer’s disease?

• What are the possible side effects of these medicines?

• Where can I find more information and resources?

• Are there any support groups you recommend?

Congratulations!

You have successfully completed the program Navigating Challenging Behaviors in Alzheimer’s Disease: How to Talk to Your Doctor and Care Team.

View Additional Materials on this topic that you may find useful:

Anxiety and Agitation (Alzheimer’s Association)

Alzheimer’s Disease Fact Sheet