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The Ribbon - Care for Caregivers

Behavioral Problems

One of the hardest parts of dementia can be in dealing with the behaviors of people with this illness. Dementia damages the brain so the person is unable to make sense of what he or she hears or sees. This confusion may make the person frightened. The behaviors that occur are a way of reacting to that fear. most of these behaviors are not under the person's control and he or she is usually trying hard to adjust. Here is a list of some of the behaviors that are common with dementia, specifically Alzheimer's Disease. The behaviors differ among patients. You may not face all of or even most of the problems listed here. But if you do face problems, one of the first places to seek help is the local Alzheimer's Association.

Catastrophic Reaction

A catastrophic reaction is an outburst of emotions. It is usually in response to a feeling of failure or of being overwhelmed. It may include behaviors such as crying, sudden mood changes, anger or fighting. Catastrophic reactions usually occur during the morning hours, when daily care activity is the highest.

Yelling or Screaming

Yelling or screaming may occur for a variety of reasons. It may result from overstimulation, meaning there might be too much going on, too many people around, or too much noise around the patient. it could also result from boredom or too little stimulation, meaning the patient needs more contact or more activity. Finally, yelling and screaming may be caused by pain, hunger, fear, or depression.

fighting

Fighting is dangerous because of the potential harm to others. It often occurs when the patient misunderstands a situation and the caregiver seems to be threatening to the patient. Perhaps the caregiver gets too close to the patient or moves too quickly. Fighting might also occur because the patient feels no control over what is happening to him or her. The patient sees fighting as a way of getting back some of that control at that moment. Patients with dementia might not know how to deal with anger in any other way than fighting. It is a defensive response.

Wandering

Wandering might be how a person copes with stress, boredom, or need to exercise. Sometimes, it reflects the need to search, a sense of feeling lost, or acting out a past work role. Other possible reasons for wandering are physical, including feeling pain needing to urinate or medication side effects. It can also be driven by changes in the brain. There are generally four types of wanderers:

  1. Exit-seekers: usually want to leave the building or house
  2. Restless wanderers: want to simply pace or roam
  3. Stimulators: looking for means of stimulation; may touch wall surfaces or curtains
  4. Imitators: wander because someone else does (generally in nursing facilities)

Resisting Care

Sometimes, dementia patients refuse help getting bathed, dressed, and/or fed. Resistance may occur if the patient doesn't understand what is wanted and feels rushed or treated roughly. It can also result from fear of being treated poorly or being dropped. Also, refusing care might be a way of getting control over a situation in which he or she feels threatened. Finally, resistance might occur if the patient is cold, embarrassed, or fears water.

Sleep Problems

Sleep problems include problems falling asleep and/or waking up during the night. Sleep problems might occur for many reasons, such as normal reduced need for sleep among the elderly, pain, the need to go to the bathroom, use of food or drinks with caffeine during late afternoon or evening, and too much napping or inactivity during the day. Additionally, the sleep/wake cycle can be altered by changes in the brain.

Verbal Aggression or Outburst

Verbal aggression includes arguing, cursing, threatening, or accusing. It may come as a part of resisting care, a catastrophic reaction, or during fighting, or it may occur separately. Anything that causes stress might bring about this behavior. Verbal aggression might be the only way a dementia patient can show anger. It is important to remember a person with dementia who is verbally aggressive usually does not know or mean what he or she says.

Unjustified Complaining

Complaining without reason can be very bothersome. Often, the caregivers feel guilty about the care he or she is giving and complaints make the caregiver feel worse. The complaining may often take the form of being constantly concerned about health. These complaints can occur for a variety of reasons, including low self-esteem, need for attention, lack of stimulation, or depression. Other behavior problems include: losing, hoarding or hiding things, rummaging in drawers and closets, inappropriate sexual behavior, repeating questions, repetitious actions, clinging or following, forgetting phone calls, and making frequent demands.

Sundown Syndrome

People with dementing illnesses seem to have more behavior problems in the evening. This worsening of behavior is often called "sundown syndrome". The cause is not yet understood but if you find that your patient has this problem, some careful planning of the daily schedule can help. For example, do not schedule bathing or going out for an outing in the evening. Also, establish an evening routine so that the patient will not become more confused.

Shadowing

Sundowning is often accompanied by "shadowing", where the person with Alzheimer's disease follows or mimics the caregiver, or talks, interrupts, and asks questions all the time. At times, the person might become upset if the caregiver wants to be alone.

Paranoia/Suspiciousness

It is not uncommon for persons with progressive dementia to become suspicious or paranoid. The person might accuse his spouse of cheating or stealing money or might think that other people are trying to find him and harm him. Many times, reassurance does little to relieve the patient. In these situations, distracting the patient with an activity or favorite topic might be helpful.

Delusions and Hallucinations

As the disease progresses, the Alzheimer's patient might begin to have delusions or hallucinations. Delusions are fixed false beliefs, and an example might be when a patient believes that someone is trying to kill him or steal from him. A hallucination is when a person experiences something through his senses that other people do not. An example of a hallucination might be hearing voices or seeing children at the foot of the bed.

How do I manage these problems?

Behaviors have different causes in different people and different solutions will work in different households. The following are called the "6 R's of Behavior Management" and might be helpful in dealing with problems that arise.

Restrict. First, try to get the person to stop whatever he is doing, especially when there is a danger of hurting self or others. Speak calmly and address the patient using simple commands.

Reassess. Ask yourself what the cause of the behavior might be. What happened just before the behavior began? Is there a physical problem? Can the source be removed or lessened? Could it be approached in a different way?

Reconsider. Try to consider the person's point of view. How must the things that are going on seem to the patient? What is she or he thinking?

Rechannel. Look for a way to continue the behavior in a safe way or look for other means of using some of the energy. Redirect the person to another activity. Remember, the behavior is important to the patient in a way we cannot understand.

Reassure. Take time to reassure the person that everything is okay and that you still care about him. Let him know that you are still going to care for him.

Review. Afterward, think over what happened and how it was managed. What will you do if faced with this problem again? Often dealing with behavior problems is difficult because the caregiver takes the behavior personally. It is important to accept the behavior for what it is, a symptom of the disease. It is also important to acknowledge that many times behavior problems become so difficult that they require medical intervention. There are a variety of medications that have been effective in controlling or limiting behavior problems. The local Alzheimer's Association has a list of doctors that specialize in Alzheimer's Disease.

Adapted from the book, The 36-hour Day, by Mace and Rabins.

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