Helping People with Progressive Memory Disorders »

Chapter 10: Managing Challenging Behaviors

People with severe dementia (decline of memory, thinking, and other mental abilities) often behave in ways that disturb family members. These behaviors are often the most troublesome part of the illness.

It is important to remember that the behavior that causes a problem is a result of brain disease, just as fever is the result of an infection. The person is not "crazy" or purposely being mean or difficult.

Sometimes the family becomes so embarrassed with some of the behaviors that they no longer take the person to social activities or to visit friends. They also do not talk to the doctor about the problems. Letting friends and relatives know about the disease ahead of time often opens up an opportunity for the friends to help and be supportive.

People vary in their ability to deal with a chronic illness in someone else. Some family members and friends may be helpful; others may seem to become more distant or refuse to believe the news.

TELLING OTHERS THE DIAGNOSIS
Sometimes telling one person the diagnosis, allowing time for adjustment, and then telling the next person helps.

Doing things in steps allows the bearer of the news time to develop a sense of which people to tell. Also, different people want, and can handle, different amounts of information. One person may only want to know that there "is a memory problem." Another person may want more information.

The needs of the person with the illness and the family unit should have top consideration. Whatever will honor the person's wishes and help in the best long-term care management should be followed. If the person is typically private and wants to reveal information to only the family, the attorney, and a member of the clergy, then those wishes should be respected. If the person wants to share the news with everyone who attends the next annual family reunion, then plans should be made accordingly.

SUDDEN CHANGES IN BEHAVIOR
A sudden change in behavior is a warning sign. If the person suddenly becomes much more restless, angry, confused, shy, or begins to see things or people that are not really there (hallucinations), something is wrong. There are several possibilities:

  1. The person may be reacting badly to a new medicine (either a prescription medicine or an over-the-counter, non-prescription medicine).
  2. Discomfort with constipation or an illness such as a urinary infection may be starting.
  3. The person may have an injury. Sometimes the person will not remember hurting themselves or may not be able to tell a caregiver about feeling pain.
  4. A change in routine or environment can result in restless or irritable behavior.
  5. Rushing to get ready for visitors or to be on time for an appointment may frighten the person and result in an anger reaction.

In general, you should try to figure out what happened just before the sudden change in behavior. Also talk about sudden changes in the patient's behavior with the doctor.

A BRIEF BREAK
Often, when attempting to deal with problem behaviors, you can take advantage of the person's severe memory problem. People with dementia can sometimes be distracted from the problem behavior and quickly forget what they were doing. For example, if the person angrily refuses to get dressed, try walking away from the room for a while. The person may forget the anger and, if the clothes are laid out, get dressed independently after a few minutes. Or when you return to the room 5 or 10 minutes later with a smile on your face saying, "It's time to get dressed for breakfast," they may smile back at you and get dressed.

CHANGING INAPPROPRIATE OR UNPLEASANT BEHAVIORS
People with severe dementia may behave in ways that can hurt them or other people. Sometimes they behave in ways that may be bothersome in public. They may have forgotten the proper time and place for certain behaviors, such as taking off shoes or pants when they are at home and keeping them on when outdoors.

Persons with severe dementia can still learn. However, they learn much more slowly than most people. By repeating things over and over, caregivers can help them learn. Rewarding desirable behavior with praise, affection or a snack for a period of several weeks or months may help establish that behavior. It is important not to reward problem behaviors by paying too much attention to them. Again, sometimes the best action is to switch to a different activity to distract them; sometimes the best thing is for the caregiver to leave the room for a few minutes (reverse time out).

People with dementia can learn appropriate behavior. Suggested steps for the caregiver to follow:

  1. Choose a behavior you want to change and work only on that behavior.
  2. Show the preferred action one step at a time. After each successful step, reward with a snack, a smile, or an enthusiastic compliment.
  3. Do not punish bad behavior (the behavior you are trying to stop).
  4. Give a reward for appropriate behavior. There are many kinds of rewards: love, food or candy, money, time with a pet, a neck massage, or a visit with a friend.
  5. Keep an hourly chart or daily record of the behavior to see if the rewards work.

For example, some people dislike bath time. They dislike undressing to change clothes. They get angry and hold tight to the clothing on their bodies as the family member tries to remove it for the bath. To change the behavior, the caregiver should

  1. Choose one behavior, such as undressing at bedtime.
  2. Keep a pleasant mood and facial expression.
  3. Give the person something to do with their hands, such as holding a drink, while you do the undressing.
  4. Undress them from the side rather than standing directly in front of them.
  5. Keep smiling and praise each step of progress.
  6. Create other ways to make the undressing time positive, such as playing the music that they like or singing.
  7. Reward good results. After you are done, show your appreciation for the cooperation of the person.
  8. Plan ahead. When undressing at bedtime is routine, undressing at bath time should be easy. Next comes developing the steps to make the bath experience pleasant and routine.

Keep a record of the person's likes, such as a walk, some time outside in the yard, or a piece of fruit or cake. Use these as rewards for positive behavior.

LOSS OF MOTIVATION
Many illnesses causing dementia involve the parts of the brain (the frontal lobes) responsible for motivation and drive. People with a loss of motivation are not lazy, bored, or depressed. They simply cannot motivate themselves and, therefore, have to be directed by the caregiver.

As the loss of motivation and drive gets worse, the person may try to avoid special interactions with friends. However social interaction including regular attendance at a respite program or an adult day health care program can be a big help to the care giving family.

Indifference
Unfortunately not much can be done about indifference. However recognizing that indifference is part of some dementias may help clear up misunderstandings of the family caregiver. The person still cares about the family even though brain cell changes result in behavior or speech that seems flat and indifferent. Asking the person questions can uncover feelings not seen in facial expressions or heard in tone of voice. For example, "Are you happy?" "Are you interested?" "Are you feeling good?"

People with dementias that are motivational/conative or intentional (for example, arteriosclerotic dementia involving changes in blood vessels within the frontal lobes and deeper areas of the brain) often become indifferent. This indifference may not be directly related to the behavior or communication changes discussed above.

DEPRESSION
Sometimes the cause of loss of motivation is depression. Depression is common in many illnesses causing dementia and can be treated. Generally if a person feels hopeless with loss of motivation, is not able to enjoy things, has a loss of appetite and difficulty sleeping, and especially if they look sad and cry often, the person should be checked by a physician for depression.

Keep Goals Easy
If the person is not suffering from depression, it is important to know that the person is not sad, feeling down, or uncomfortable. You may have to be realistic about their limitations to do activities and keep goals simple. It may be only possible to meet one goal: to keep the person dressed and out of bed during the daytime.

AGITATION AND AGGRESSION
Many dementias are associated with decreased frustration tolerance. People with dementia may seem more "on edge" or easy to anger. If the person becomes suddenly agitated or aggressive, something may be wrong. The person may be in pain or developing an infection. Agitation may result from any type of change, such as a new piece of furniture, a different schedule, or visitors. Discuss this new behavior with your doctor. People with dementia often become agitated and angry when they are faced with a problem they cannot understand or fix, are tired, are restless, doing more than one thing at a time, or are in a room with too many people or too much noise.

Activity
You may redirect agitation by giving the person a task, such as handing them something to do, laundry to fold or a broom for sweeping. The person may benefit from doing simpler versions of tasks they used to do, such as mixing foods though no longer able to cook a full meal. Another way to redirect restless energy is to provide an activity box - a box with objects and pieces too big to swallow; pieces to sort, touch, look at, fit together, or "fiddle with."

Personal care
People with motivation problems often fight any kind of hands-on care. They may pull away from you or try to push you away. Make sure that the care you are giving is part of a daily routine, and try to do most of this hands-on care only once or twice a day. Explain in a couple of words the next action and then talk of the reward, such as a walk outside when the personal care is done. Sometimes the best reward is to leave the person alone for a while after finishing the care.

Distractions
It is possible to reduce a lot of the agitation and aggression by distracting the person. Try catching their attention with something different or "time out," walking away for three minutes and then coming back with a pleasant smile and greeting.

Anger
People with dementia will sometimes get angry or may even become violent because they misunderstand. They may think strangers have broken into the house or that someone is stealing from them.

Redirecting their actions with an interesting task or snack, or comforting the person may help this problem. Daily exercise, such as walking outdoors, and regular interesting activities, such as looking at photos with friends, slow dancing, or chair exercise to music, help channel energy into more positive outlets.

It is important to observe the setting and actions of the person to learn what triggers the anger. At the earliest sign of anger or frustration, such as restlessness, a frown, or a loud voice, the caregiver should try to help or distract the person. Redirecting anger before it builds up may be done with a cup of juice, a shoulder massage, a foot or hand massage, garden activity, pet care, arranging objects, such as books, or piling up newspapers or magazines. It is important to help the person save face and not to keep reminding them about how they misunderstand. Daily exercise and a routine, interesting schedule also help channel energy into more positive activities.

Hallucinations
Some people with progressive dementia will have hallucinations, usually seeing or hearing things that are not there. They may see animals in the room or people breaking into the house. If the person does not become too upset about the hallucination (which is usually the case), simple reassurance or distractions should help. Sometimes a piece of furniture in a dimly lit room may appear to be a threatening bear; moving the chair out of the house will get rid of the "bear." There should be good lighting in the room. People who need glasses or hearing aids should wear them!

How to Respond - You should not "humor," go along with or openly disagree with people who are hallucinating or who believe that people are stealing from them. Instead, you might explain that you understand that they are afraid. Try to reassure them that the room is safe and that you are nearby, available to help whenever needed.

Switch Activities for a While - Do something restful, calming, and peaceful. Go outdoors for a walk, drive in the car to a scenic place, water the plants, sit on a porch swing or rocking chair, go fishing, or go on a light picnic (snack food at a park or downtown bench).

Medicines may help if these suggestions do not work. Talk about this with your doctor.

WANDERING
Wandering is a serious problem, especially if someone wanders out of the home alone. Wandering may be a sign of different major problems:

Wandering during the night is much more of a problem, since the person is probably not being watched as closely. Do as much as you can to help the person sleep well at night.
Each of these problems must be treated separately.

Problems Remembering Space and Places
Disorientation- Do not let people with dementia go to places where they may feel lost or get lost. How to take care of this problem depends on the level of the dementia.

Mild Problem: First review the actual trip, for example, to the neighbor's house or post office, with them. Then let them lead you to see if they can find the way. If they are correct, you may want to give a bit more independence.

Recheck Often: Try to have them go to the same places on a regular basis. Keep their surroundings, such as the home or neighborhood, as much the same as possible. Give directions with a brief map to carry, if the person can read or follow maps.

Medium Problem: Have the person carry information with a phone number including area code, so that if they get lost, someone can call the telephone number listed. Some cities have identity bracelet programs with the telephone number of the local law enforcement office engraved on the person's bracelet. This service keeps home addresses private.

People with serious wandering problems should carry enough identification, a medic-alert bracelet or necklace that says "memory problem", only a very small amount of money, no credit cards, and no valuable jewelry.

Severe Problem: People with severe memory problems should not go anywhere by themselves. They need constant supervision.

Problems With Attention
A short attention span may lead to problems with communication, personal care and wandering. Those with severe memory problems may be able to pay attention for only a short time. As a result, they may be unable to understand what is happening. They may wander off because they are easily sidetracked by anyone, a person or pet walking by, or anything, an interesting truck or car, that catches their attention.

To deal with an attention difficulty, the caregiver should:
Reduce Distractions - Any noise or activity going on will draw away the attention of the patient from the activity you are trying to do.

Find Interesting Activities That Get Attention - Nothing keeps a person's attention as well as human interactions. Talk to them, sing to them, and make eye contact when speaking with them. Use their name often to keep their attention.

Make Sure That the Environment is Safe - Check the home for good lighting and safe stairs. Remove clutter, dangling plants or lights. Fix loose doors and windows.

Increase Motor Activity - People with dementia may be very active even when they are not lost or distracted.

Try increasing physical activities. Take walks now and then. Have them do yard work, such as raking or sweeping; simple house chores, such as dusting or polishing brass, furniture, or woodwork; folding laundry; making bread; or stacking newspapers or magazines. Washing cups, pans, or dishes are good "water therapy" that relaxes them. Outdoor water therapy includes washing the car, watering plants, or hosing down the windows or porch. Fun activities include dancing, painting, or working with clay or wood.

Find a safe place for the person to walk or pace, such as a fenced (locked) yard or uncluttered hallway leading to a sun room or porch.

Sleep Disturbance
Often patients with severe dementia have a hard time sleeping. A person with dementia may wander out of the home at night, turn on the stove, or fall. People with severe memory problems often have more difficulty at night. It is necessary for everyone to get solid sleep at night.

Tips to Improve Sleep or Sleep Hygiene - Try to avoid caffeine. Remember that tea and many soft drinks, such as cola as well as coffee, have caffeine. Sugar and chocolate also can keep a person from sleeping. Avoid heavy meals with meats, such as beef or pork, thick sauces, or rich desserts just before bedtime.

Some kinds of medicines also can cause trouble sleeping; discuss this with your doctor.

Some people, for example those with back problems or arthritis, may wake up because of pain. If people have medicine for pain, taking this medicine at bedtime will help them sleep.

A person may wake up at night because they have to use the bathroom. If they drink less after dinner, they may not have to go to the bathroom in the middle of the night. However, it is important to make certain they do not get dehydrated. It may be easier for them to have a commode or urinal close to the bed. Those who cannot control going to the bathroom sometimes wake up because of wetness. Incontinence underwear may help prevent the feeling of wetness.

If people have too much rest during the day, it may be hard for them to fall asleep at night. They should have some exercise, preferably in the late afternoon or early evening. People who have severe progressive dementia need exercise just as healthy people need exercise.

People often have trouble sleeping at night if they take naps during the day. Even though it is easier for the caregiver to do chores when the person naps during the day, it may cause problems sleeping at night. Sometimes keeping someone in street clothes with the room well lit will keep them from taking a nap.

Do not forget the night light. A person who wakes up and is afraid or does not know where he or she is, probably will not be able to get back to sleep. Also, if there is some light in the house, there is less risk for a fall.

Sometimes keeping the room a little quieter or a little cooler will help.

The only activity that should take place in the patient's bedroom is sleeping.

Make sure the house is safe. Before bedtime turn the stove off at the circuit breaker.

If all else fails, request from the physician a sleep medicine that does not interfere with memory function.

Night Wandering - Some patients wander at night. Unfortunately this may keep the caregiver in light sleep, on the alert, or awake all night. The caregiver must have a good night's sleep to handle the challenges of each day.

Remember, if the person sleeps well, the caregiver is also rested.

Remember these sleep helps:

Urine Incontinence
About 3 out of 10 older people have difficulty with urine control called urinary incontinence. Many people feel so embarrassed about it that they avoid social situations and become housebound. Incontinence may come with an illness, infection, exhaustion, or hospital admission and leave when the person heals.

There are three general types of urine incontinence:

  1. Stress incontinence is leaking during exercise, coughing, sneezing, laughing, or lifting heavy objects.
  2. Urge incontinence results from being unable to wait long enough to reach a toilet. Usually people with a stroke, Parkinson's disease, or multiple sclerosis have this condition. People with late stages of a progressive memory disorder may develop urge incontinence. As health declines, the condition gets worse.
  3. Overflow incontinence results from a full bladder "flowing over." Often it occurs in people with diabetes or men with an enlarged prostate.
    A physician will identify treatable and untreatable causes of urine incontinence. Treatments include medicine, diet changes, minor surgery, muscle exercises (Kegel exercises), and biofeedback. In the past few years, behavioral training-such as timed visits to the toilet has been a successful way to treat, or at least manage, urine incontinence.

Bladder Training - Bladder training or bladder re-education is an easy way to manage urine urgency, frequency, or incontinence. For this reason it is useful for people with progressive dementia.

The training involves trying to change the behavior step by step. With each step of success, the person is re-warded. Basically, toilet times occur frequently. Then gradually the time increases between toilet visits. Over time the bladder muscles work harder and become more able to hold back urine. The person who uses the toilet every hour at first may be able to work up to a three or four hour wait.

First a one-week diary identifies the person's lifestyle and pattern of incontinence. Then for several days, the person should try to use the toilet every 30 to 60 minutes. When dryness is achieved (and rewarded), the interval is increased by 30 minutes. The person is encouraged to wait the full amount of time set. If 30 minutes more are too long, then a shorter interval increase, such as 15 minutes, may work. Shorter increases in waiting time expand the bladder training period some additional weeks. Many people with mid-stage Alzheimer's disease may be able to work up to a 21 hour wait between toilet times.

Training Tips - Increasing toilet intervals may require some work with distracters, rewards, or relaxation strategies. When urgency occurs, instead of rushing to the toilet, the person should try to relax, sit or stand quietly, breathe slowly and deeply, and focus elsewhere on the body. Important also are positive thoughts such as, "I CAN make it to the bathroom" or "I can do it." The person should walk slowly to the bathroom because fast activity may lead to urine leaking.

Incontinence Products and Information - A variety of absorbing pads and underclothing are available. Many are worn easily with everyday clothing. More information about incontinence and resources is available from:

1. Help for Incontinent People
PO Box 544A
Union, South Carolina 29379

2. Simon Foundation for Continence
PO Box 835
Wilmette, Illinois 60091

Catheters should be used as a last resort because of the risk for infections.

When people with progressive memory disorder become completely incontinent, their skin must be protected. Frequent changes of absorbing underwear, skin cleansing, and massage are important.

The dermatologist's general rule for skin care is good to follow:

"When the skin is too dry, moisten it with ointment or lotion."

"When the skin is too moist (chafed and red), dry it with powder or cornstarch."

Illness or Pain
When patients with dementia lose the ability to speak or to understand their own body, they may not be able to inform others about feeling ill or having pain. They may get restless or irritable. They may start pacing or try to wander off. If the person has a painful expression, winces to touch or shifts in body position, seems to touch an area of the body, rubs their limbs, or seems to be struggling in any way, check with your doctor for health problems.

Boredom
When people have changed skills, they may stop doing the tasks and leisure activities that used to fill their days. It may be difficult to find ways to keep them busy. As a result they may become bored, look around for interesting things to do, or wander off in search of interesting activities or people.

While it is important to keep to a routine, it is also important to have a variety of activities that keep the person active and involved. The activity may involve one or two steps, such as washing dishes or folding laundry, or just a repeat of one step, for example, sweeping, scrubbing, polishing furniture, waxing the car, or rubbing on skin lotion. In the kitchen, tearing lettuce, cutting out cookies or biscuits, mixing and kneading are fun. In the yard, watering, weeding, digging, raking, sweeping, or picking up fallen branches may keep a person busy. Exercise to music, grooming and caring for pets, visits to the library, museum, park, shopping mall, or ice cream store, and participation in day (health) care programs can keep the day interesting and fun and decrease the urge to wander.

Loneliness
The person with the memory disorder may be lonely and wander off looking for companionship. Or they may be looking for a childhood friend or relative though that friend or relative may have died long ago. When there is a great deal of change in frontal lobe brain cells, people may seem to shadow, or "stick to" - stay physically close to and almost appear to "stick to" - the people whom they enjoy or like. They may want to stay close to or cling to their caregivers and never give a moment of privacy to the caregiver. Though this may appear to be a way to deal with loneliness, it is very different. This clinging results from brain cell changes rather than the loss of relationships.

Sometimes the clinging seems never ending. The caregiver has no time alone. It may be useful to bring a helper who looks like the caregiver or like a childhood friend into the home for companionship and supervision of the person with the memory disorder. Then the caregiver may take a break for a few hours, spend time alone or with some friends for a refreshing change of pace.

Front Door Tips
Surprisingly, some wanderers are stopped from leaving the house when a red STOP sign is put on the inside of the front door or a small black rug on the floor in front of the door. A "Dutch door" provides a sense of open space while keeping someone inside and safe.

Other ways to stop people from leaving the house by themselves, might be to put a table or big chair in front of the door. People with severe memory problems often do not think of walking behind a piece of furniture to get to a door. Sometimes hiding the doorknob with a towel or a wide piece of fabric across the door knob section of the door will stop wanderers. Hiding the doorknob in this way is using a visual barrier.

It is usually possible to find a latch or door lock that the patient is not able to figure out how to open. This may be helpful but may be dangerous in case of a fire.

Not a visual barrier. A "good" visual barrier.

Alarms
You should have some sort of an alarm device that makes a noise when the front door is opened. You may buy alarms at electronic stores or make your own alarm, such as a string of empty cans with stones inside or some jingle bells in a bag fastened to the doorknob. If you can, put a fence around the yard and allow free indoor/outdoor access. This "freedom trail" will sometimes keep the person from wanting to walk down the street.

Driving a Car
A person with wandering problems should not have access to an automobile. People with severe memory problems have a greater chance of getting into an accident. Sometimes the person with the memory disorder will use their own judgment and give up driving a car. Occasionally a family will request that the person play it safe and stop driving. The doctor, based on a medical and neurological evaluation, may advise the patient to stop driving. Carrying out the doctor's orders is the family's responsibility. The person may become angry with the family about the restriction on driving. The family should remind the person, "The doctor wants you to stop driving until you are better."

The recommendation to stop driving extends to all motor vehicles, such as trucks, motor boats, or lawnmowers.

To help stop the driving, the caregiver should put away or hide the car keys. If the person insists on keeping the car keys, file down the ignition key. This may be a good time to donate the car to a favorite charity or to a hard-working grandchild. It may be time to buy a new, different car. A difference in style, color, and model, especially on the inside and at the control panel, should result in the person being unable to learn how to drive the new car. In some cases it may be necessary to fix the car so that it cannot start. One way to disable a car is to remove the spark plug wires.

CHAPTER SUMMARY
As brain cells die, the abilities of people change. Sometimes problem behaviors surface. A sudden change in behaviors is a warning that a medical evaluation is needed and a new health problem may be present.

People with severe dementia may do embarrassing behaviors, such as un-dressing in public places. They can learn appropriate behaviors through steps.

The caregiver should:

  1. Work only on a specific behavior you want to change.
  2. Show the preferred action one step at a time. After each successful step, provide a reward.
  3. Not punish the behavior you are trying to stop.
  4. Reward appropriate behavior.
  5. Keep an hourly chart or daily record of the behavior to evaluate progress.

When a person has lost motivation, the caregiver should structure the weekly routine to include interesting activities and interactions. Adult day health care programs help. Regular respite is essential to the health of the caregiver.

Restless, agitated or aggressive behavior may be managed with a distracter such as a walk, a time out or a different activity, such as the task of folding laundry. Personal care may become easier when it is regularly scheduled for brief periods, which are followed by a reward.

Hallucinations may appear as people or animals. Better lighting, a happy, pleasant distracter such as a snack or a walk, a different activity in a different setting, or a simple reassurance of safety and companionship can help.

Sleep disturbances are helped by removal of stimulants from the diet and from the environment. A quiet, cool, restful bedroom with a comfortable bed and taking mild pain medicine for arthritis pain at bedtime can solidify sleep. Daytime naps should stop if someone does not sleep well at night. A night light helps make a place look safe and reduces falls for those getting up to use the bathroom in the middle of the night.

Wandering may be a sign of confusion, disorientation, restlessness, sleep problems, illness or pain. Addressing these concerns may reduce wandering. Other tips include hiding the exit with a chair in front of it or fabric over the doorknob. Alarms from stores or homemade alarms can warn caregivers about activity at doors.

A person who wanders or who has a severe, progressive memory disorder should not drive. Usually the doctor, based on medical findings, takes away driving privileges but it is up to the family to enforce NO DRIVING.

The Next Chapter deals with issues and emotions that may surface in family members as they deal with progressive dementia. The warning signs of abuse and neglect are discussed briefly and the Hotline for reporting suspected cases in the State of Florida is the Florida Abuse Registry at 1-800-962-2873.

Go back to the index.

Material taken from

"Helping People with Progressive Memory Disorders: A Guide For You And Your Family, 2nd ed." (University of Florida Health Science Center). Used with permission from the authors: K. M. Heilman, MD, L. Doty, PhD, J. T. Stewart, MD, D Bowers, PhD, & L. Gonzalez-Rothi, PhD. (1999).

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College of Public Health and Health Professions, University of Florida