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Barbara’s brother Arthur insists on wearing the same yellow shirt every day. He becomes very worried and upset if he is unable to wear it. It disturbs Barbara because he used to be so careful about his dress and has a closet full of perfectly good shirts. The yellow shirt is fairly new, however, and looks good enough to wear out in public as well as around the house.
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Box 3-3. How to Analyze and Manage a Problem Behavior
Decide:
1. Is it really a problem?
2. What is the problem?
3. With whom does it occur—just you, or specific other people?
4. Where does it occur—anywhere? away from home? some specific place in the house? the yard?
5. When does it occur—any particular time of day?
Then:
6. Try to figure out why it is occurring.
7. Consider how you are going to manage it.
8. Decide on a course of action.
9. Stick to it for at least a couple of days. Make sure anyone else providing care tries it, too. (It needs more than one try to see if it may be successful.)
10. Analyze the situation again.
11. If necessary, try another solution.
* * *
Arthur’s insistence on wearing his yellow shirt is not a problem because wearing the shirt does not keep him from doing other things. It does not harm or disrupt Barbara’s life in any way (unless she lets it upset her), and it certainly does not hurt anyone else.
Approaches Barbara could use: She could resign herself to the one shirt. She could buy him several more just like it and let him put one on every day.
General approaches:
• If it is not a problem, take a deep breath and remind yourself, again, that you must redefine your idea of success and pick your battles.
• If it is a problem, proceed with the steps outlined next and try to make the situation better.
Decide What the Problem Is
There may really be several different problems. If you figure out what the root problem is and do something about it, the others may diminish or even disappear.
Maria’s husband with AD loves to be outside but tramples the flowers and vegetables in her garden because he does not seem to be aware that they are there.
The basic problem is not that he tramples the garden but that he paces. If Maria addresses the root problem, pacing, the garden problem will diminish or disappear.
Approaches Maria could use: Pacing is not a problem in itself. Maria needs to create a different place for her husband to pace, away from the garden.
General approaches:
• Study the problem for a couple of days. Take notes on it in your caregiver diary (see chap. 1). Perhaps get a friend or relative to look at the situation with you for a different perspective.
• Sometimes you cannot figure out the root problem in a complex situation. It is then a matter of trying different approaches one by one.
With Whom Does the Problem Occur?
Does the problem occur only with you, only when others are around, or only when other specific people are present?
Harvey’s wife sticks close by him all day. She insists on staying in the same room or the same section of the yard. She enjoys visits from her female friends but is very uneasy with Harvey’s male friends and sticks to him “like glue” when they are there. Harvey looks forward to these visits but cannot enjoy them when his wife stays so close.
The problem is that Harvey’s wife is uncomfortable around men other than her husband.
Approaches Harvey could use: Once he figures out that it is specifically men who bother his wife, Harvey is prepared for it and handles it better. He gets his daughter to come by occasionally, she takes his wife into another room, and Harvey then slips out to visit with “the boys” elsewhere.
General approaches:
• Once you figure out with whom the problem occurs, work around it.
• Additional caution: Anytime your partner has unusually negative reactions to a new caregiver, whether it be a paid care-giver, friend, or family member, be concerned. Observe them together for awhile. In addition, leave for a short time while the new caregiver is there and then arrive home unexpectedly. This new caregiver may be using inappropriate interaction techniques or may even be abusing your partner, verbally or physically. Check for skin tears or bruising. It may be difficult for you, but you must deal with it. Remember, your partner will probably not be able to tell you much about problems. You must observe, assess, and determine how to deal with the situation.
Where Does the Problem Occur?
The physical environment affects behavior. Remember, it must be calm, pleasant, and reassuring. Your partner may have fewer behavior problems in certain parts of the house. Large open areas (a room with a cathedral ceiling, for example) may bother him or her. The person probably feels less protected there. Problems occur in unfamiliar settings but also when a person is cooped up in the same area for too long.
Mrs. Sparks used to love gardening, but her dementia is now more severe. Mr. Sparks is concerned because she refuses to join him in the garden, and he is afraid to leave her alone in the house.
The problems are:
• Mrs. Sparks is afraid of the outdoors because she feels exposed and unprotected there.
• She may also feel like she is far away from home when she’s outside. People with dementia commonly react this way to open areas.
• Glare or low light, wind, and temperature differences can increase the sense of being in a strange place.
Approaches Mr. Sparks could try: He can highlight the door to the house, paint the edges a bright color, or put colorful plants along each side so Mrs. Sparks can see the door more clearly.
Mr. Sparks can point to the door and reassure her that she is not far from home. If this does not work, he could try installing an awning over a patio just outside the back door. She could stay there while he gardened. Mrs. Sparks would still feel protected by a roof, and it would reduce glare and wind.
General approaches: Your partner cannot understand and adjust to an environment that is distressing him or her for some reason. You must change it, whenever possible, to suit the person. Environmental problems are easier to manage than others, because they are something real and concrete which you can usually modify to some extent for comfort.
When Does the Problem Occur?
Patients have more behavior problems when they are tired. Therefore, they tend to have fewer problems in the morning and more later in the day. This tendency to have problems late in the day is called sundowning. Sundowning is usually expressed as anxiety, restlessness, or refusal to do anything. It is also common for a person to want to “go home,” even if he or she is already home. Night and day reversals are also a problem.
Paul’s mother was always alert and happy in the morning and took her baths then. She suddenly began resisting and finally refused to bathe. He noticed that she had dark circles under her eyes, and he checked her to see if she was ill. She had no fever or other symptoms, so he decided to check on her more at night.
The problem turned out to be that she was rummaging through her drawers most of the night, was not sleeping, and was therefore too tired to bathe in the morning.
Approaches Paul could try: He should assess his mother’s routine. Is something keeping her awake (a change in the household routine—noise, activity, or too much light at night)? Is she drinking water or caffeine at night? Is she sleeping during the day? If there are no changes in the routine, he will need to have her examined by her physician. She may be ill, or the physician may need to adjust medications or prescribe something to help her sleep.
General approaches: Assess the routine and adjust it to suit your partner as much as possible. See a physician if the problem persists. If the problem is sundowning, keep the routine during the problem time consistent, do not expect the person to do difficult or stressful tasks, and keep reassur
ing him or her that everything is okay. Soothing music and easy activities they enjoy will help many patients. It is usually worse if they have nothing to do.
Why Some Behavior Problems Occur and How They Can Be Managed
This section looks at common causes for some behavior problems and general hints on how you can manage them. These hints may help you avoid some problems in the first place.
Physical Problem as a Cause
Look to a physical condition (discomfort, pain, or illness) as a cause of a behavior before looking at any other causes. The best clues that your partner may be in physical distress are a general reduction in ability to function, a new difficult behavior, or an increase in severity of an existing behavior. For example, a sudden increase in the general level of confusion is often the first symptom of a urinary tract infection or pneumonia.
If you can relieve the discomfort, pain, or illness, the behavior may be avoided or go away. Discomfort can be caused by little things you could handle easily but your partner cannot. For example, could the person be dehydrated or hungry? Are the hearing aids or dentures in place, and do they fit well? Does the person need to go to the bathroom?
If you even suspect a problem with pain or illness, contact your physician immediately. You need to check on the person’s physical condition daily because he or she probably cannot tell you when something is wrong.
Signs of discomfort or pain include fidgeting, pulling at clothing, change in body posture or gait, reduced attention span, rubbing a specific part of the body, a tense or worried facial expression, refusal to move about or do usual activities, limping, and holding or protecting specific body parts.
Signs of illness can include the usual symptoms of cold or flu, including vomiting, diarrhea, and fever. (Older adults’ normal body temperature is usually a little below ninety-eight degrees.) Also look for pale, bluish, or dry lips and cold, clammy, or elastic skin (skin can become loose when it is dehydrated). Other symptoms can include refusal to eat or drink, a change in bowel or bladder habits (including incontinence), swelling, rash, rapid breathing, coughing, gasping for breath, a change in heart rate or pulse, an increase in hallucinations and delusions, and loss of general awareness or consciousness.
Medication as a Cause
Suspect medication as a cause if there is loss of awareness or consciousness, drowsiness, problems with ambulation (including dizziness), change in gait, inability to control body movements (ataxia), constipation, incontinence, rash, or reduction in blood pressure. Work with your physician to manage the problem—never alone!
Additional important points about medications, your partner’s and yours:
• Make sure your physicians know about all medications you or your partner are taking, including over-the-counter medications, herbal remedies, and prescriptions.
• Report any change for the worse to the physician immediately.
• Remember that some side effects can probably be expected, especially in frail elderly persons. Ask the physician what to expect, what is “normal.”
• Request the smallest possible dosage first; see the physician again if it seems inaccurate.
• Allow at least two weeks for a medication to take effect, but, of course, report any change in your partner’s condition for the worse immediately.
• Be very careful to stick to the recommended dosage. In addition, never stop a medication without first consulting your physician.
• Never let your partner take medication unsupervised. This is important even with mildly impaired patients because taking too little or too much can have dire consequences.
• Be aware that generic medications may affect you or your partner differently from a name brand. Many health plans have a specific list of medications (called a formulary) from which your physician can choose. Remember, any time a medication does not have the result you expect, check with your physician. If a generic medication does not work for you, your physician can usually authorize a brand name medication. Be particularly cautious if you are used to a name brand and are switched to a generic.
Other Common Causes of Difficult Behavior
Hallucinations and Delusions
It is important not to tell your partner he or she is wrong or deny what the person is experiencing. Hallucinations or delusions are very real to him or her. If you deny that they are real, the person may become upset and afraid to trust you. Simply reassure the person, several times if needed. Tell the person that you will take care of it but don’t elaborate. You do not want to make the problem more elaborate and intense than it already is.
For example, if your partner sees a strange man in the corner (a hallucination), do not just say, “Go away.” Simply assure your partner that you will take care of it, guide the person away from that area, and try to distract him or her toward something else.
A Problem Communicating
Use positive interaction techniques. Remember to simplify and use multiple sensory cues.
An Uncomfortable or Upsetting Physical Environment
(See “Where Does the Problem Occur?” on p. 47)
Fatigue or Day/Night Reversal
(See “When Does the Problem Occur?” on p. 49)
Activities That Are Too Difficult or Too Easy or If Your Partner Has Too Much or Not Enough to Do
Excess disability can be caused by too many demands or not enough. Both are detrimental, and both can result in difficult behaviors because your partner is embarrassed, frustrated, or just not interested in what is being asked of him or her. Never force your partner to do something! This may cause a catastrophic reaction.
Reassess and adjust the tasks and methods you use accordingly. Try to stick to a set routine each day but be flexible within the routine. For example:
• Have breakfast, lunch, dinner, and walks at the same time daily, but, if family or friends come by or it is pouring rain, don’t be afraid to be flexible.
• If your partner is enjoying a football game on television, postpone your usual walk until later.
Inability to Do Once-Familiar Tasks
The inability to do once-familiar tasks can cause your partner to feel frustrated and inadequate. The person may also feel that you are deliberately keeping him or her from doing the activity and become very angry. Examples are handling money, balancing the checkbook, or taking a walk alone. Such problems are difficult to manage and require creativity on your part. One of the worst problems is driving because it is very dangerous for a person diagnosed with dementia to drive. Your partner may insist on driving and become angry with you when you refuse to let him or her do so.
If you have only one car:
• Get a prescription from your physician which you can show your partner stipulating no driving.
• Get a note from your insurance company (on its stationery) stipulating no driving.
• Hide the car keys or have an antitheft chip installed, so only you can turn on the car.
• If your partner becomes upset while you are driving (arguing, trying to get out, grabbing the wheel), you may need to avoid traveling with him or her alone. Use taxis or have a friend drive, with you and your partner in back.
If you have two cars:
• Get a statement on insurance company stationery to show to your partner which states that you are the sole driver for both cars.
• Disable your partner’s car, stating that it cannot be fixed.
• Remove your partner’s car from the garage. Out of sight, out of mind!
Difficulty Stopping an Activity (Perseveration) Causing Difficult Behavior
If your partner has trouble ending an activity, try to attract the person’s attention. Guide the person away from the activity by using alternatives he or she enjoys (use visual cues, for instance, a cookie or other favorite snack) or try to remove supplies, if applicable. The idea is to redirect the person.
Disorientation Due to Poor Memory and Perceptual Problems
Disorientation can cause wandering a
nd be a severe problem. More than 60 percent of persons with AD wander off at some point. Try to educate friends and neighbors who live nearby in case you need their help.
Keep a cell phone handy in case your partner bolts from the house and you must follow. Make sure the phone numbers for police, friends, and relatives who can help are coded onto or near your cell phone and home phone.
You may want to get cards that state: “The person with me has Alzheimer disease (or dementia). I need help. Please call the police. The number for the police department is _______.” You can give them to people you encounter if your partner bolts and you need to follow.
Most important: Register with the Alzheimer’s Association Safe Return Program. It is a low-cost nationwide data base that identifies individuals with dementia through a bracelet inscribed with a personal ID code; scholarships are also available. (For information nationwide, call 888-572-8566, or call your local Alzheimer’s Association office.)
Catastrophic Reactions
Avoiding a catastrophic reaction (box 3-4) is, of course, easier than actually having to deal with one. Communicating with and assessing your partner frequently is the key. If you see your partner frowning, looking anxious, or wringing his or her hands, don’t just wait to see what happens. Try to manage the situation before it gets any worse.
There are some precautions you can take before a catastrophic reaction happens:
• Remember to store soothing things your partner enjoys where you can access them easily.
• Refer to the section on wandering.
The causes of catastrophic reactions are the same as those for behavior problems. The difference is that a catastrophic reaction is a sudden change for the worse which can quickly become very difficult or even impossible to manage (box 3-5).
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Box 3-4. Catastrophic Reactions
A catastrophic reaction is any sudden change in behavior for the worse, such as:
• verbal or physical aggression
• worry
• anger
• tension in the body or in facial expression
Joy A. Glenner Page 5