Difficult Behaviors Associated with Alzheimer's Disease (AD)

What difficult behaviors are commonly associated with Alzheimer's disease?

Alzheimer's disease (AD) is an incurable brain disease. It can cause troublesome changes in behavior. Some of the most common difficult behaviors are wandering, inappropriate behaviors, hallucinations and delusions, and sundowning. Inappropriate behavior can range from mild agitation to hard-to-manage aggression.

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 happen at any time of the day or night. The wanderer can get hurt or their wandering can cause privacy problems for others. Wandering problems affect more than 75% of people with AD.

Why do people with AD wander?

Some possible reasons are:

• He has paced or walked all of his life to cope with stress.
• The behavior comes from habits she had at an earlier time in her life. For example, if she used to return to work after lunch every day, she may now wander outside daily after lunch.
• She may be searching for something familiar, especially if her environment has recently changed.
• He 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.
• She is trying to escape.
• The behavior may be a side effect of medicine.
• He is shadowing a caregiver because he doesn't know what he 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:

• cannot separate dreams from reality
• 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 too early.

How can wandering problems be helped?

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. Whether or not a reason is identified, the risks to the wanderer can often be lessened. For example, he or she may be encouraged to walk along a circular path. The following may help:

• If you think agitation may be a problem, talk to 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 him wander inside the house but not outdoors if a fenced yard with a locked gate is not available. Try removing things from view that may cause him to think about going outside, such as hats, sweaters, coats, and gloves.
• Provide a wandering trail where a circular pattern always returns the person to where she started. Inside the home, this trail can be through a series of rooms. Outside, a path can be made within a fenced yard.
• Try to reduce or prevent daytime napping so that it may be easier for the person to sleep at night.
• Put personal items out where the person can see them so she does not need to go searching for them.
• Reduce noise (for example, TV). Sound and confusion in the environment may prompt the person to wander to a quieter, calmer area.
• Reduce the number of people interacting with him or her.
• Make sure that exercise times and walking are daily activities.
• Approach the wanderer from the front and begin to walk with her to provide direction. Guide her to the reverse direction, rather than turning her around directly. This avoids confrontation and promotes positive behavior. Talk to her as you walk to provide distraction from the wandering behavior.
• Speak reassuringly in a normal tone of voice. Alarming or scolding the wanderer may prompt undesired behavior.
• Develop a plan of action to follow in case the person wanders away. 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 photos of the person in case he or she does get lost. Make sure the person carries an ID 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. The Web site is http://www.alz.org/we_can_help_medicalert_safereturn.asp.

INAPPROPRIATE BEHAVIORS

What causes inappropriate behaviors?

As AD gets worse, more and more brain functions are lost. This includes loss of impulse control, which makes it harder for someone with AD to control his or her behavior. When the person is in pain or discomfort and has lost a sense of time, he or she may not be able to handle delays appropriately. When needs are not met, the person may become angry or insulting or begin cursing. Examples of other inappropriate behaviors that may occur are sexually inappropriate behavior, aggressive or assaultive behavior, pestering, and saying the same things over and over again.

How can I deal with inappropriate behaviors?

Remember, the disease is causing the behavior, not the person. Many of these behaviors come from a need for attention or affection. Giving attention or affection, such as a pat or a hug, can often prevent disruptive behavior.

Some ways to handle difficult situations include:

• Remain calm, even in 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.
• Avoid drawing attention to the person. Try to divert the attention of others away 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 2. More than 2 choices or open options can frustrate someone with AD.
• 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 a task or respond to a question.
• Stand close to the person when giving 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 and delusions?

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, someone who does not feel safe may make up an imaginary companion who helps them feel safe.

Delusions are false beliefs held despite evidence to the contrary. For example, a person with AD may plan activities for when a relative will come to visit even though the relative is dead. It is thought that people develop delusions to avoid depression and self-blame. They may help them keep good feelings about themselves and a sense of control.

Delusions are more common than hallucinations among people with dementia. Having one or both of these problems is very common. Between 30 and 60% of people with dementia have delusions as their dementia gets worse.

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. Trying to correct the person or argue about what is real may cause increased anxiety, aggression, and other unwanted behaviors.

Validation techniques are often helpful. This means, for example, agreeing with the person's feelings, rather than arguing about the content of the delusions 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. Show that you hear what the person is saying, not whether it is correct or incorrect. 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 stay calm and friendly. Speak slowly and clearly to make yourself heard. Look directly at the person. 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 find and build on strengths the person has. 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?

Late in the afternoon or evening people who have AD may become more suspicious, disoriented, and upset. They may have more hallucinations and delusions. These behavior changes are called sundowning or the sundown syndrome. The cause of sundowning is not known. Maybe it happens because of tiredness at the end of the day. Perhaps it is harder to understand what they are seeing in the dim light of twilight and it becomes frightening.

How can I deal with sundowning?

• Sundowning behaviors may be lessened by a short nap before late afternoon. 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.
• Limit the number of visitors and noise at that time of day to lessen stress and confusion.
• Try to find out which changes in surroundings cause behavior problems. Try to avoid these changes. It may help to keep a journal about what happens and when it happens.
• 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.

Are there medicines for difficult behaviors?

Research on the effectiveness of medicines to control difficult behaviors does not show that major anti-psychotic drugs have great benefits. Studies usually show more benefit from behavioral strategies than from medicine. Studies have shown just some small benefits from medicines with lots of risk from side effects of the medicines. If a person has disruptive, difficult-to-manage behaviors, talk to their healthcare provider. In some cases, a trial of medicine may be necessary.

Where can I get more information?

For more information contact:

The Alzheimer's Association
Web site: http://www.alz.org
24-hour help line: 1-800-272-3900 (TDD: 1-866-403-3073).