Related topics: •  Alzheimer's: Dealing With Mealtimes •  Alzheimer's: Dealing With Wandering •  Communicating With Someone Who Has Alzheimer's •  Dealing Positively With Alzheimer's Behaviors: Part IV

Alzheimer's disease causes the brain to deteriorate, causing severe memory loss, confused thinking, and personality changes. As a result, many caregivers find their loved one's behavior can be perplexing, frustrating, and difficult to deal with. But if you understand why the patient is acting in a certain way, you'll be more likely to respond with skill and patience. These step-by-step guidelines are reprinted with permission from Alzheimer's: A Caregiver's Guide and Sourcebook (John Wiley & Sons, 1992) by Howard Gruetzner.

Behavior: The person wanders around at night or seems to be looking something.

Common responses: She is confused and does not know what she is doing; she is being inconsiderate.

Alzheimer's interpretation: Wandering may occur when the person is disoriented in the middle of the night and has forgotten her reason for awakening. The sleeping difficulties may be caused by frightening noises, hallucinations, or nightmares. When there is a lack of structured daily routine, the difference between night and day is less pronounced.

Helpful responses

•Reorient the person when she is wandering in the household.

•Reassure the person that she can look for whatever she wants tomorrow, after a good night's sleep.

•Keep a light on in the bathroom.

•Consult a physician if the sleeping difficulties persist.

•Increase the person's level of activity during the day.

Behavior: The person refuses to eat, or eats very little.

Common responses: He has a poor appetite; he is too picky about food; he needs to be more active.

Alzheimer's interpretation: As Alzheimer's progresses, it is common for decreases in appetite to occur. Eating binges and desire for sweets also occur, but greater concerns are created by the refusal to eat. Often persons fail to eat because they believe they have already eaten or because they simply forget what they are doing. This is more likely to occur with persons who live alone or in situations where structured daily routine is minimal.

Brain impairment also contributes to difficulties in using eating utensils. Swallowing can be difficult.

Helpful responses

•Minimize between-meal snacks.

•Maintain as high a level of physical activity as possible.

•Provide regular meals that follow a routine.

•Eat with the person.

•Prepare familiar and favorite foods.

•Be sure food can easily be chewed and swallowed.

•Cut meat as necessary; use utensils that are easy to hold.

•As coordination deteriorates, offer direct assistance.

•Consider using vitamins or food supplements.

•Avoid overemphasizing neat eating habits.

•Give the person more time to eat.

Behavior: The person does not seem to care for you anymore, and she says you do not love or care about her.

Common responses: She no longer loves and appreciates you.

Alzheimer's interpretation: As brain impairment progresses, the person's awareness of the people around her naturally diminishes. She becomes less expressive and makes fewer gestures of appreciation. When she questions whether you love or care about her, she may be seeking reassurance to counteract her sense that she is losing you due to her diminishing abilities.

Helpful responses:

•Reassure her that you care, without taking offense at her questions.

•Provide as much involvement as possible with other individuals and supporting influences, such as Alzheimer's Family Support Group.

Behavior: The person's hands and arms shake; he stumbles and is unsteady when he walks.

Common responses: He is nervous; he has visual problems; his arthritis is getting worse.

Alzheimer's interpretation: While nervousness may be responsible for some of the shaking, other causes also should be considered. Side effects of medications prescribed for severe agitation, delusions, hallucinations, and sleeping problems may be the source. Stiffness also could be caused by these medications.

In other cases, tremors may be directly related to the brain impairment. Rapid jerking movements of the limbs or even the body can occur. These are call myoclonic jerks and should be evaluated by a physician.

Loss of mobility and coordination of large (gross) and small (fine) movements occur with the disease. These coordination problems contribute to difficulties with all motor skills. Weakness, poor balance, and stooped posture make walking difficult; likewise, difficulty in getting up from a chair leads to long period of sitting. Prompt medical attention should be sought as these conditions escalate.

Some persons with Alzheimer's may exhibit symptoms suggestive of Parkinson's disease. The neurological disorder can coexist with Alzheimer's, but it is difficult to differentiate when Alzheimer's is in its advanced stages.

Helpful responses

•Check to be sure that poor vision or other impairments do not restrict the person's mobility.

•Change furniture, lighting, throw rugs and so forth to promote safety at home.

•Provide the person with ample opportunities for exercise to prevent premature weakness and loss of coordination.

•Avoid rushing the person, provide assistance when required, and encourage him to carry out simple tasks one step at a time.

•Consult a physician when dramatic deterioration in motor skills occurs.

Behavior: The person sits doing nothing for long periods of time.

Common responses: She should be doing something worthwhile; she should be more active; she is bored, lazy, or depressed.

Alzheimer's interpretation: As brain impairment affects memory and intellectual abilities, spontaneous and self-initiated activity diminishes. Apathy and lack of interest in what is going on develops because the person's ability to partake in daily life is compromised. Her abilities to plan and carry out purposeful activity are likewise affected by diminished cognitive abilities. Later, she may develop problems with walking and standing. More positively, sitting quietly may be a welcome relief for her from the increasingly stressful demands of daily life.

Helpful responses

•Develop daily routines that include enjoyable activities which require minimal concentration.

•Encourage and assist the person's participation in shared activities.

•Walk and exercise with the person to encourage muscle strength and coordination.

•Realize the person may be enjoying the chance to relax and be free of stressful activities.

•Use music and some television to add stimulation to time spent sitting.

Behavior: The person wets or soils himself.

Common responses: He is not trying to control his bodily functions and does not care anymore; he wants your attention; he is trying to get back at you for something.

Alzheimer's interpretation: These problems are not uncommon in more advanced stages of Alzheimer's. The person is less aware of the need to relieve himself and does not associate this need with the bathroom.

Memory problems and perceptual difficulties make it more difficult for the person to find the bathroom. At night, the disorientation and confusion make it more difficult to use the bathroom.

Helpful responses

•Assist the person in maintaining regularly scheduled trips to the bathroom.

•Leave a night light on in the bathroom.

•Consider reducing the intake of liquids in the evening.

•Label the bathroom door and help the person practice finding it.

•Be understanding of bladder and bowel accidents, which are quite embarrassing to the individual.

•Have a doctor examine the person for other underlying medical problems.

Behavior: The person wanders aimlessly.

Common responses: She is disoriented and lost; she does not have anything to do.

Alzheimer's interpretation: Wandering is a problem for people who have brain damage. Because of the potential consequences of wandering, it is a behavior with potentially dangerous outcomes. The person could fall or become lost in the neighborhood.

Wandering cannot be easily understood if one sees it as aimless. In fact, what appears to be aimless wandering is not an aimless activity at all in many cases. A brain damaged by Alzheimer's disease merely has difficulty determining the purpose or goal of such activity at all in many cases. The impaired person may not be able to communicate; thus the caregiver may find that the purpose of the wandering becomes clearer through observation. Often people who are thought to be wandering aimlessly follow the same path repeatedly. This may be more evident in institutional settings. Along the path are sources of positive stimulation (outside views, water, coffee, social contact). Wandering can also be an effort to avoid or escape adverse situations, such as dark or noisy areas and more isolated spots which create a strong sense of insecurity.

Other explanations for what appears to be wandering behavior include the following possibilities:

•The person is looking for something she has lost.

•The person does not recognize her surroundings and may be looking for something familiar. (This may be an example of agnosia -- failure to recognize familiar persons, things, places -- or a reaction to new or changed physical environment.)

•The person is more confused, restless, or agitated as a reaction to tranquilizers or other medication.

•The person may be more confused during certain parts of the day, for example, early morning or late evening.

•The person may be confused as a result of sensory impairment. Because she hears or sees poorly, she cannot comprehend sights and sounds accurately. These types of impairments can also result from brain damage. In this case, the individual cannot process visual and auditory information correctly, and her perceptions are distorted.

•The person may wander as a response to stress. She may walk away from upsetting situations and then become lost. A catastrophic reaction may precede the wandering behavior. Some persons may have always gotten upset easily by a stressful situation and walked away from it.

Helpful responses

•First, determine the type of wandering. Is it really aimless, or is the wandering goal-directed?

•Then, determine if the wandering is an attempt to gain something (stimulation, food, drink, security, or physical activity because of restlessness).

•Remember that restlessness and pacing are common during some phases of Alzheimer's disease. Supervise this activity constructively. Walk with the person in a safe and stimulating area. (Too much stimulation can be overwhelming at times.)

•Determine if the wandering behavior is a response to stressful environmental factors. For example, too much noise or demands placed on the person too quickly and forcefully may precipitate behavior that results in wandering and getting lost.

•Determine if the person's apparent wandering is a reaction to fear. Has the individual misinterpreted sights or sounds? Are these delusions or hallucinations? Is she trying to get away from something that frightens her? If so, wandering may be her attempt to seek security and safety. Relate to this need.

•At night, leave some lights on and the door to the bathroom open, so the person does not get lost on the way to the bathroom.

•If you believe the wandering is created by medications, consult your physician for a medications review.

•Place locks on outside doors that cannot be undone by the organically impaired person but which you can open easily.

•Have the person wear a MedAlert-type bracelet which says "memory impaired." A name, phone number, and address on this or some other items will also be helpful.

•If wandering continues to be difficult to manage, consult a physician or mental health professional.

Wandering is a major source of stress to most caregivers. Understandably they worry about it because of its potential harmful outcomes. Caregivers should take action to deal with this problem, or it will create more stress and heighten the need for supervision considerably. If the memory-impaired person does wander away from home, notify the police department immediately. Having pictures of the person along with an accurate description of such characteristics as hair color, height, weight, and other identifiers will increase the chances of the person's being found quickly. Be sure to tell the police that the person is memory impaired, confused, and so forth. You may offer suggestions on how the person may best be approached. If you know, tell the police about the status of the person when she left. Was the person upset and angry? It may be better for the caregiver to remain home and have family or friends assist with the search so that someone is at the home should the patient return there.

When the person returns home, it will be better to relate positively to the return. Your anger or scolding will only make matters worse. The person will probably be frightened anyway.

Last updated February 12, 2009
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