There are a number of behavior problems that sometimes accompany Alzheimer’s disease and related illnesses. These behaviors may include resistance, wandering, agitation, incontinence, etc. The presence or absence of these behaviors can vary greatly from one person to another throughout the progression of the disease.
There are many reasons why a difficult behavior may be occurring. Sometimes the behavior may be related to changes taking place in the brain. In other instances, there may be events or factors in the environment triggering the behavior. In some situations a task, such as taking a bath, may be too complex or the person may not be feeling physically well.
It can be helpful for caregivers to try to understand why the person with dementia is behaving in a particular way. If caregivers can determine what may be causing or triggering the behavior, it may then be possible to figure out ways to prevent the difficult behavior from occurring again. Listed below are four categories of possible causes of difficult behaviors. It
is important for caregivers to systematically look at all of these potential causes, as one or more of them may be contributing to the behavior.
Causes Related to the Person’s Physical and Emotional Health
People with dementing illnesses suffer progressive brain damage which can affect their behavior. This is an important factor to consider when planning interventions for behavior problems.
People with dementia can also have other medical problems that greatly affect behavior. Listed below are some of the more common physical problems of which caregivers should be aware.
- Effects of medication. People with dementia are very vulnerable to overmedication, to reactions from combinations of drugs, and to their side effects. Drugs can cause confusion as well as sudden changes in a person’s level of functioning. Falling, drowsiness, a sudden increase in agitation, strange mouth or hand movements may be side effects of medication and should be reported to the doctor immediately. Tranquilizers and sedatives are sometimes given to facilitate sleep or calm behavior, but these medications can also affect bladder functioning and can cause incontinence problems.
- Impaired vision or hearing. Both these problems can affect a person’s ability to understand what is being said. It is important to see a doctor to correct, if possible, any hearing or vision problems. If caregivers are aware of these deficits, they can often help the person compensate for them.
- Acute illness such as urinary tract infection, pneumonia, gastrointestinal infection or fever may lead to increased confusion. It is not always easy to recognize acute illness in people with dementia, since they may not be able to verbalize symptoms. Any sudden changes in behavior should be reported to the doctor.
- Chronic illness such as angina, congestive heart failure or diabetes can affect a person’s mood and/or level of functioning. Also, chronic pain associated with arthritis, ulcers or headaches can cause irritability.
- Dehydration. Many dementia victims do not get enough fluid, because they no longer recognize the sensation of thirst or they forget to drink. Symptoms of dehydration may include dizziness, confusion, refusal to drink, skin that appears dry, flushing and fever, and rapid pulse.
- Constipation. This can be very uncomfortable and eventually can lead to bowel impaction. In some people with dementia, fecal impaction can contribute to delusional behavior.
- Depression. Many of the symptoms of depression, such as impaired concentration, memory loss, apathy and sleep disturbances resemble those of dementia. It is often very difficult to tell which are caused by depression or by the dementing illness itself or a combination of both of these problems. It is important for your doctor to be aware of your family member’s symptoms and do a thorough evaluation for depression.
- Fatigue. Disrupted sleep patterns can cause angry or agitated behavior.
- Physical discomfort because the person’s immediate needs aren’t being met. For example, the person may be hungry, the person may need to use the bathroom, the temperature of the room may be too warm or too cold.
Causes Related to the Environment
- Environment too large. Sometimes the physical space in which a person with dementia is living is just too confusing. Try closing off part of the house. In nursing homes, consider a small separate dining area for people who may need some assistance with eating. Encourage small groups (4-6 people) for social activity programs rather than trying to include twenty or more impaired people at one time. Some long term care facilities are designing special dementia care units.
- Too much clutter. Sometimes there is too much in the environment for the person to absorb. Try removing furniture that is no longer being used or other objects that may be in the way. If a person tends to wander, clear a pathway through the house. Whenever possible, simplify the environment so that the confused person is not too overwhelmed.
- Excessive stimulation. When there is too much going on in the environment, such as music during conversation or there are too many people around, some people with dementia may respond with anger or frustration. They may have reached a saturation point and may no longer have the ability to cope with stress. It is important for caregivers to think about what was going on right before the outburst. Too much noise? Was the size of the group too big?
- No orientation information or cues. As people become more cognitively impaired they encounter increasing problems with negotiating the environment. People with dementia become very dependent on the environment to support them. They may get lost trying to find their way to the bathroom because all the doors in the hallway look the same. Some people may be able to read and understand signs, while others may have lost that ability. It may be necessary to provide the information in different ways. For example, some people will be able to follow a sign indicating the direction to the bathroom; some will recognize a brightly colored awning hung over the bathroom door, and still others will need a line on the floor from the dining room to the bathroom.
- Poor sensory environment. As people grow older, their ability to hear, see, feel, taste and smell changes. Usually one or more of these senses are impaired in people with dementing illnesses. Lighting, visual contrasts between floors and walls, the use of colors can affect a person’s behavior and level of functioning. Inadequate levels of light may affect a person’s ability to concentrate when he/she is trying to eat. Patterned tile floors can look like steps, causing the person to trip or become uncertain. Glare from direct sunlight or a highly polished floor can affect a person’s ability to see.
- Unstructured environment. People with dementing illnesses need a certain amount of routine and daily structure on which they can depend. This consistency is important in helping to minimize the amount of stress the person with memory loss may be experiencing. For example, don’t change the furniture arrangements in the house. At the same time, there needs to be flexibility in the daily routine to accommodate the changing moods of the person. For example, a rigid bath schedule can cause problems for both the impaired person and the caregiver.
- Unfamiliar environment. An environment which is new or unfamiliar is more likely to be confusing to the person with dementia. When planning activities or modifying the physical environment to accommodate the special needs of a person with memory impairment, try to focus on familiar situations which the person is used to. For some people going to a restaurant or going on a trip may be terribly upsetting. In nursing homes, it is important to create a warm and familiar environment that resembles the person’s home, with spaces for a living room, kitchen and family room, etc. The décor should include familiar colors, objects and possessions.
Causes Related to the Task
- Task too complicated. Sometimes we ask people with dementia to do tasks that are too overwhelming and difficult for them, although they may seem simple to us. Getting dressed or brushing teeth are examples of tasks that are very complex because of the many steps involved. Breaking a task down into small, concrete steps is one effective technique which enables a person with dementia to continue to do tasks successfully. (See Problems with Dressing, for example.)
- Too many steps combined. Make sure the person is doing one small step at a time. Sometimes caregivers combine several steps together not realizing the impaired person may no longer be able to do two or three steps at one time.
- Task not modified for increasing impairments. As the person’s functioning declines, the caregiver may have to do the first few steps of the task to get the person started. Eventually the caregiver may have to do most of the steps him/herself; even then it is important to try to keep the person involved, doing one or two simple steps.
- Task unfamiliar. People with dementia gradually lose their ability to learn new tasks or skills. Try to focus on familiar tasks the person may have done before the onset of the illness, such as washing and drying dishes, making beds, folding laundry, gardening, etc.
Causes Related to Communication
Communication between the caregiver and the person with dementia is an extremely important – and often difficult – part of the caregiving process. Many times people with dementia become angry or agitated because they do not understand what is expected of them. Or they may be frustrated with their inability to make themselves understood.
Some of the causes of poor communication and some suggestions for better communication are discussed in detail in The Importance of Good Communication Skills.
When you are faced with a difficult behavior or situation, try to understand why this behavior is occurring. What are some of the factors which may be triggering the behavior and that you can change? It is important to try to recognize elements in the environment, the medical situation or problems of communication that may be contributing to the problem.
- When does the problem occur? It can be helpful to keep a daily log or a record describing the problem or situation. Jot down the time and what happened. In as much detail as possible, think about what was going on right before the behavior occurred. Who was involved? Who was affected by the behavior? What emotion was expressed by the confused person? Anger? Frustration? Fear? How did the caregiver respond? Did the caregiver’s approach work? This log can be helpful in identifying a pattern in terms of the time of day or some triggering event. Angry outbursts, for example, may occur at certain times during the day when the person is fatigued, or when there are too many people in the room.
- Carefully review the four categories described about and try to pinpoint specific causes. Is the problem related to the person’s health? To the environment? The task the person may be engaged in? To the style of communication between the caregiver and the person?
- Develop a list of alternative strategies for responding to the behavior or situation. Be creative. Have someone else look at the situation and give you suggestions. Refer to this manual for additional ideas.
- Think about the strategies you have identified. Decide on the one you are going to try first. Don’t worry if it fails. You are gaining new information about the situation even if the approach doesn’t work.
- Problem solving is a process of trial and error. There are no simple solutions. You may no sooner solve one problem than another develops. Or you may find that your solution works sometimes but not others. Be flexible!
- Reassure the person after an upsetting situation. Let him/her know that you do understand and care.
- Remember: The behavior is caused by an organic brain disease. The person is not deliberately trying to be nasty, stubborn, or to annoy you.
- Don’t try to carry the entire burden yourself. It is okay to ask for help.
- Weaverdyck, Shelly. Neuropsychological Assessment as a Basis for Intervention in Dementia. In Nancy Mace (ed.) Dementia Care: Patient, Family and Community. Baltimore: The Johns Hopkins University Press, 1989. (The Conceptualization of the above assessment process is from the work of this author.)
- Zarit, Steven; Nancy Orr and Judy Zarit. The Hidden Victims of AD: Families Under Stress. New York: New York University Press, 1985.