Difficult Behaviors Associated with Alzheimer's Disease (AD)

What are common difficult behaviors associated with AD?

Alzheimer's disease (AD) is an incurable brain disease that can cause troublesome changes in behavior. Some of the most common difficult behaviors associated with AD are wandering; inappropriate behaviors (sexually inappropriate behavior, aggressive and assaultive behavior, pestering, repetitive vocalizations); hallucinations and delusions; and sundowning.

WANDERING

What is wandering?

People with AD often wander, that is they walk or pace either aimlessly or with a purpose that is not clear to others. Wandering may occur at any time of the day or night and poses the risk of injury to the wanderer as well as privacy problems for others. The problem affects more than 75% of people with AD at some time during the course of their disease.

Attempts to stop someone from wandering can result in confrontations that make matters worse. Study the person to try to figure out why he or she wanders: Is she trying to go somewhere? Is he looking for something or someone? Is the wanderer "shadowing" someone else? Is he trying to escape? Whether or not a reason is identified, the risks to the wanderer often can be minimized. For example, a fenced yard with a locked gate can be installed to protect someone who wanders outdoors or the older adult may be encouraged to wander along a circular path.

Why do people with AD wander?

Some possibilities include:

• The person has paced or walked all of his or her life to cope with stress.
• The behavior comes from habits established at an earlier time in the person's life. For example, a person who used to return to work after lunch every day may now wander outside daily after lunch.
• The person may be searching for something familiar, especially if his or her environment has recently changed.
• The person is trying to find the bathroom, is hungry and looking for food, is cold and looking for warmth, is lonely and looking for a loved one, is bored, or is feeling trapped or agitated.
• The person is trying to escape.
• The behavior may be a side effect of medicine.
• The person is "shadowing" a caregiver because the wanderer doesn't know what he or she should be doing.

Nighttime wandering is especially difficult for caregivers, who may be prevented from getting much-needed rest. A person may wander at night because he or she:

• can't separate dreams from reality
• is too disoriented to know what time it is
• has days and nights mixed up
• is too inactive during the day
• is having a reaction to medicines
• needs to use the bathroom
• doesn't need as much sleep as when he or she was younger and has gone to bed at too early an hour (advanced sleep cycle can be a normal part of aging).

How can wandering problems be helped?

The following may be helpful:

• Agitation may cause wandering. If you think agitation may be a problem, consult with the healthcare provider. Low doses of medicine can often be prescribed to manage agitation. Once agitation is decreased, the wandering may decrease.
• Allow the person to wander in a safe environment. For example, let the person wander inside the house but not outdoors if there is not a secure yard. Try removing visual cues such as hats, sweaters, coats, and gloves from the person's view.
• Provide a wandering trail where a circular pattern always returns the person to the original point. Inside the home, this trail can be through a series of rooms. Outside, a path can be made within a fenced yard.
• Reduce or prevent daytime napping to promote sleeping at night.
• Put personal items out where the person can see them so he or she does not need to go searching for them.
• Reduce noise (for example, television). Sound and confusion in the environment may prompt the person to wander to a quieter, calmer area.
• Reduce the number of people interacting with the person.
• Provide exercise times and walking as a part of daily activities.
• Approach the wanderer from the front and begin to walk with him or her to provide direction. Guide the person to reverse direction, rather than turning him or her around directly. This avoids confrontation and promotes positive behavior. Talk to the person as you walk, to provide distraction from the wandering behavior.
• Reassure the person as to time and place by speaking in a normal tone of voice. Alarming or scolding the wanderer may prompt inappropriate or confrontational behavior.
• Develop a plan of action to follow in case the person wanders away outside. There may be familiar places to look or a trail the person usually follows. Set a time limit for searching before calling 911 for help. Keep up to date photographs of the person in case he or she does get lost.
• Make sure the person has identification information on his or her person that cannot be removed (attached to the back of a shirt, for example).
• Contact the Alzheimer's Association for information on a program called Safe Return. This is a nationwide program that helps when a person with Alzheimer's is missing.

INAPPROPRIATE BEHAVIORS

What causes inappropriate behaviors?

As AD progresses, more and more brain functions are lost. This includes loss of impulse control, which results in the inability to remember which actions are acceptable and which are not. Sense of time is lost and the person may not be able to handle delays. The experiences of pain, pleasure, and discomfort remain. When needs are not met, the person may become angry or insulting or begin cursing.

The person with AD cannot control his or her behavior. Many of these behaviors are directed toward getting attention or affection. Giving attention or affection, such as with a pat or a hug, can often prevent disruptive behavior.

How can I deal with inappropriate behaviors?

Remember, the disease is causing the behavior, not the person. Some ways to handle difficult situations include:

• Remain calm, even in the presence of the most offensive situations. Don't raise your voice. Don't act surprised or angry. The person with AD will mirror your emotions. If you stay calm, it helps them to calm down.
• Maintain a sense of humor. Laughter is a great outlet.
• Avoid drawing attention to the person. Try to divert the attention of others from the person with the inappropriate behavior.
• Distract the person to another activity or another area.
• Validate the emotional content of what the person says.
• Do not scold or shame. It makes the situation worse.
• Be sure the person's physical needs are met. Hunger, pain, thirst, stress, or even an infection may cause behavior changes.
• Avoid situations that the person might believe are dangerous. When faced with a perceived danger, a person with AD will strike out in self-defense.
• Speak in simple, short sentences.
• Limit choices to two. More than two choices or open options will frustrate the person.
• Break large tasks into small ones to avoid frustration.
• Smile and praise accomplishments. Each accomplishment within a task should be praised.
• Take time. People with AD process information slowly. Give them time to do the task or respond to the question.
• Stand close when providing personal care. It gives the person a sense of security. And, if the person with AD should strike out, the blow may pack less punch than one delivered from farther away.
• Be alert to early signs of frustration and divert the activity.
• Keep everything simple, easy, flexible, quiet, and calm.

HALLUCINATIONS AND DELUSIONS

What are hallucinations?

Hallucinations are perceptions that are not based on reality, such as seeing or hearing things that are not there. Many hallucinations are related to the need to feel safe. For example, to make up for feeling unsafe, a person makes up an imaginary companion who provides the needed security.

What are delusions?

Delusions are false beliefs held despite definite evidence to the contrary. For example, a person prepares, waits, and plans activities for when a relative will come to visit, even though the expected relative is dead. It is thought that people develop delusions to avoid depression and self-blame, and to maintain good feelings about themselves and a sense of control.

How can I deal with hallucinations and delusions?

Dealing with hallucinations or delusions requires patience and a willingness to listen. Do not contradict the person's beliefs. Caregivers should encourage the person to give more details about the events he or she is describing. Any attempt to focus on what is real may cause increased anxiety, aggression, and other unwanted behaviors.

Validation techniques are often helpful. This means, for example, agreeing with the feelings involved in the person's delusions, rather than arguing about the content or interrupting with the facts. Tell and show the person that you are listening to and have questions about what he or she is saying. Indicate that you hear what the person is saying, not whether it is correct or incorrect.

Listen to the message the person is giving to you. There may be a link between the person's past experiences and what he or she is currently thinking but is unable to express in the present, real situation. It is more important to listen and respond to what the person is saying than to try to get him or her to face reality.

Always remain calm and friendly. Speak slowly and clearly to make yourself heard. Look directly at the person when speaking. These techniques show your interest in what is being said and may decrease the person's anxiety. Establish a trusting relationship that is not demanding and identify and build on strengths of the person. Feeling safe, trusted, and respected can decrease the need for protective delusions.

When these measures do not help, medicine may be needed to decrease hallucinations and delusions if they cause the person to be anxious or physically out-of-control. It is important to talk to your healthcare provider about these issues.

SUNDOWNING

What is sundowning?

Persons with AD may become more suspicious, disoriented, and upset and may have increased hallucinations and delusions late in the afternoon or evening. These behavior changes are called sundowning or the sundown syndrome. The cause of sundowning is unknown. It may be due to tiredness at the end of the day. Perhaps seeing and processing information in the dim light of twilight is more difficult and frightening.

How can I deal with sundowning?

• Sundowning behaviors may be lessened by a short nap earlier in the day. This helps prevent excessive tiredness and stress at the end of the day.
• A regular routine is helpful to decrease stress. Always doing a particular activity at the end of the day is comforting and reassuring.
• Turning on lights to keep the amount of light constant until bedtime is helpful.
• Many people are more sensitive to noise and have more confusion late in the afternoon. Limit the number of visitors and noise at that time of day.
• Try to determine which changes in surroundings cause behavior problems. Keeping a journal about what happens and when it happens may help. Avoid these changes to help prevent the unwanted behavior associated with sundowning.

Provide reassurance and support. When unwanted behaviors do occur, do not argue or attempt to change the behavior. Instead, try to divert the person to another activity.

For information on related topics, see:

Alzheimer's Disease
Caregiver Issues with Alzheimer's Disease
Caregiver's Guide

Where can I get more information?

For additional information contact:

The Alzheimer's Association
919 North Michigan Avenue
Chicago, IL 60611-1676
Telephone: 1-800-272-3900; 312-335-8700
Web site: http://www.alz.org