Section 3

Challenging Behaviors

Challenging Behaviors of Alzheimer's Disease

Anxiety/Agitation/Assaultiveness
These behaviors manifest themselves in various ways, including pacing, fidgeting, yelling, throwing objects, refusing help, or hitting. They can also be secondary to tension, to feelings of loss or depression, to changes within the brain itself, to other physical illness, to pain, or to the side effects of medications. Assaultive behavior may even occur in persons who have not demonstrated it in the past.

Aphasia
Impairment or absence of speech or written communication due to the progression of the disease.

Apraxia
The inability to carry out purposeful movements. The patient may know what to do, but is unable to do it. (Tie shoelaces, wave good-bye or button a shirt.)

Catastrophic reactions
Emotionally intense responses to seemingly trivial occurrences. They can appear as sudden mood changes, crying, verbal abuse, and physical violence. Catastrophic behaviors may be a response to overstimulation in the environment. They usually happen when an event overwhelms an individual's ability to think or react.

Delirium
A group of symptoms referring to a temporary impairment of mental function. It is characterized by a clouding of consciousness with a reduced capacity to shift, focus and sustain attention. It is manifested by difficulty in sustaining attention to both external and internal stimuli, sensory misperception, and a disordered stream of thought.

Disturbances of sleep-wakefulness and psychomotor activity are present. The individual suffering from delirium has a decreased ability to attend to environmental stimuli and often shows highly disruptive and variable behaviors. Delirium is usually worse at night. Onset is relatively rapid and the course typically fluctuates.

The total duration is acute, usually brief, ranging from hours to days, but can be fatal if delirium is not identified and treated. Delirium can occur alone or concurrently with dementia or other medical conditions. The majority of individuals presenting delirium suffer from a specific physical illness. If the individual decompensates rapidly over a period of several hours to days, there is very likely a superimposed medical problem that must be rapidly identified and treated. Recognizing the difference between dementia and delirium is essential.

Delusions
Beliefs that are contrary to fact. They remain fixed or persistent despite all evidence to the contrary.

Depression
One of the most common behavior symptoms of AD (Alzheimer's Disease). Various reports suggest that it is present in 15 to 55 percent of persons with AD. Clinical depression is different from ordinary sadness and grief. It may have a biochemical basis in the brain, and its symptoms include difficulty concentrating, apathy, social withdrawal, loss of interest in usual activities, slowness of movements, fatigue, weight loss, and insomnia.
Hallucinations
Sensory experiences that cannot be verified by anyone other than the person experiencing them. Any sense may be involved, particularly seeing and hearing.
Illusions
Misinterpreted perceptions that usually do not last long, such as when an individual mistakes moving shadows for people or animals.
Paranoia/Suspiciousness
Unrealistic, blaming beliefs. Paranoia results from damage to the part of the brain that makes judgments and separates facts from fiction. A dementia person with paranoia will not connect the unrealistic, blaming belief to a realistic belief, no matter how many explanations or clarifications are given by caregivers.
Restlessness/Wandering
A common behavior and can be difficult to manage because of its unpredictability. Wandering may result from restlessness and pacing, or getting lost, or may occur with a change in environment.
Sleep disturbances
Occurs throughout the course of the disease. A person may actually complain of sleeplessness, or may just be found wandering at night. Sleep disturbances accompany many of the other behavioral symptoms listed above. Some researchers believe that changes taking place within the brain disrupt the normal sleep-wake cycle.
Sundowning
An increased frequency or severity of confusion or other behavioral symptoms (often anxiety) late in the day or after dark. It may be a result of fatigue or reduced sensory stimulation (less light or activity). Sundowning is often easier to manage than some of the other symptoms because it occurs at a predictable time of day.
Verbal noises
Any vocal behavior which is disturbing to others, for which a meaning or significance is unclear. This may include screaming, repetition of recognizable words, nonsensical verbal noises, talking incoherently, moaning and whistling.

Source: Aronson, M. 1988. Understanding Alzheimer's Disease. New York: Macmillion Publishing Co.

Robinson, A., Spencer, B. and White, L. 1989. Understanding Difficult Behaviors. Ypsilanti, Michigan: Eastern Michigan University.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Combativeness

When an Alzheimer patient becomes combative, angry or agitated, it may be because of frustration. The individual may feel that he's being pushed to do something that simply can't be done. Consider the following factors as possible sources of frustration:

Dressing - The person who can't get his arm through a sweater may grow increasingly upset and start to thrash around.
Bathing - The person who's frightened by running water in the bathtub may push away a caregiver who is trying to give him a bath.
Eating - The person who doesn't like a certain type of food may refuse to eat it.

Keep in mind that the combativeness takes many forms. Sometimes the person may simply try to push your hand away, while at other times the person may resist or strike you.

Deal with combativeness by trying to examine the underlying causes. Consider the following issues:

Physical Causes

Is the person tired because of inadequate rest or sleep?
Are mediations such as sedatives and tranquilizers creating side effects?
Is the person unable to express the fact that he's in pain?

Environmental Causes

Is the person over-stimulated by loud noises, people or physical clutter?
Is the environment unfamiliar?
Does the person feel lost or abandoned by the caregiver?

Poor Communication

Are you asking too many questions or making too many statements at once?
Are your instructions simple and easy to understand?
Is the person picking up on your own stress and irritability?
Are you making the person more frustrated by being overly negative or critical?

Action Steps

Be on the lookout for frustration.

Look for early signs of frustration in such activities as bathing, dressing, or eating, and respond in a calm and reassuring tone.

Don't take aggression and combativeness personally

Keep in mind that the person isn't necessarily angry with you. Instead, he may misunderstand the situation or be frustrated with his own disabilities.

Avoid teaching.

Offer encouragement, but keep in mind the person's capabilities and don't expect more than he can do. Avoid elaborate explanations or arguments.

Use distraction.

Don't persist in making the person perform a particular task, especially if she has repeatedly been unsuccessful. If you see the person getting frustrated with buttoning a shirt, try to distract her with another activity such as putting on a pair of pants. After a time, you can return to the shirt. Or take the person to a quiet room, have a cup of tea, or go for a walk.

Communicate directly with the person.

Avoid expressing anger or impatience in you voice or physical actions. Instead use positive, accepting expressions such as "please," "thank you," and "Don't worry, everything's going to be fine." In addition, use touch to reassure and comfort the person. For example, you might want to put your arm around the person or give him a kiss. In addition, follow these tips:

Speak slowly and clearly.
Use short, simple sentences.
Approach the patient slowly and from the front.
Use repetition and frequent reminders.

Decrease your level of danger.

Assess the level of danger - both for yourself and for the person. In other words, if the person becomes combative, ask this question: "How much trouble am I in - and what can I realistically do about it?" Often you can avoid harm by simply taking five steps back and standing away from the person for a short period of time. On the other hand, if the person is headed out of the house and onto a busy street, you need to be more aggressive.

Be conservative in using restraint or force.

Unless the situation is serious, try to avoid physically holding or restraining the person. By fighting with the individual, you'll probably make him even more frustrated and anxious.

Experiment with objects that have a soothing effect.

Some caregivers believe that stuffed animals have a soothing effect on the person, while others find that pets - from cats and dogs, to birds or goldfish - have a calming effect.

Learn from previous experiences.

Try to avoid situations or experiences that make the person combative. For example, if the individual tires easily when she visits with family members, you might want to limit the length of these visits. Try to identify early signs of agitation. For example, restlessness, frustration, fidgeting, or blushing sometimes precedes outbursts.

Restructure tasks and the person's environment.

Simplify tasks or plan more difficult tasks for the time of the day when the person is at his best.
Give the person adequate time to respond to your directions or requests.
Allow the person to make some choices, but limit the total number of choices. Having too many decisions to make about what to eat or wear might be confusing or overwhelming.
Break down each task into small steps and allow the person to complete one step at a time.
Keep the environment calm, quiet and free of clutter.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter V. Rabins, MD, a geriatric psychiatrist and director of the Price Teaching Service and associate professor of psychiatry at the Johns Hopkins University School of Medicine, Baltimore, Maryland.

Special thanks to the following Chapters of the Alzheimer's Association: Indianapolis Area, Eastern Massachusetts, South Central Michigan, Cincinnati, Cleveland, Dallas, and South Central Michigan.

Other Resources include:

Miriam K. Aronson, Ed.D. Understanding Alzheimer's Disease. New York: Scribner's. 1988.
David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Company, 1986.
Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains , 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter , 402-502-4301 or 1-800-272-3900 (Helpline)

Just the Facts and More: Eating

Many Alzheimer patients have problems with eating. For example, a person might lose his appetite or the ability to evaluate if food is too hot or too cold. In addition, a person might forget that he has eaten and ask you for another meal. Begin by assessing the problem. Ask yourself: "Why is the person having difficulty eating?" The following questions are helpful:

Physical Difficulties -- Is the problem physical? Sores in the mouth, poor-fitting dentures, gum disease, or dry mouth may make eating difficult. A visit to your physician might be helpful.
Disease -- Does the person have an additional chronic disease? Intestinal or cardiac problems or diabetes might lead to loss of appetite. Constipation or depression can also decrease appetite.
Agitation/Distraction -- Is the person agitated or distracted? If agitated, the person probably won't sit still long enough to eat an entire meal. If the person is distracted, you might want to think about how you can reduce distractions in the room.
Eating Style -- Have you recently changed eating styles? Does the person have a preferred eating style? Some Alzheimer patients who aren't accustomed to sitting down at the table for three full meals may prefer to have several smaller meals or snacks.
Visual Problems -- Can the person see adequately? An Alzheimer patient who had been losing weight began to eat when she started wearing her glasses at mealtimes.
Environment -- Are there odors or harsh noises in the room that might interfere with the person's digestion?
Food Quality -- Is the food appealing - in appearance, smell, and taste?

Once you have evaluated the sources of eating problems, you can take action.

Action Steps

Adapt to the person's food preferences.

Remember that you are dealing with a person who has long-standing personal preferences and tastes. Try to keep these likes and dislikes in mind when you are preparing food. On the other hand, the person may no longer remember her favorite foods.

Try to reduce mealtime confusion.

Provide a calm environment at mealtimes. Minimize distractions, loud noises, and abrupt movements.
Offer meals at regular times.
Make mealtime a pleasant but simple event. For example, put only one item of food on the plate at a time.
Give the person only one utensil at a time. You may want to omit the knife from the place setting. Avoid using plastic utensils because they may break.
Avoid patterned plates, tablecloths and placemats that might confuse and distract the patient. In most cases, use plain white plates or bowls and a contrasting placemat.
Deliver simple, easy-to-understand instructions. For example, "Pick up your fork. Put some food on it. Raise it to your mouth."
Be patient. Don't criticize the person's eating habits or urge him to eat faster.
Speak slowly and clearly. Be consistent and repeat instructions in the same words each time.
Be realistic about going out to eat. Avoid noisy or large restaurants and choose those that are small, comfortable, and familiar. Only you can decide if the person can order directly from the menu. As an alternative, you might want to order for the person.
Make positive use of distractions. If the person resists eating, take a break, involve her in another activity, and return to eating later.
Use memory aids to remind the person about mealtimes. You might try a clock with large numbers, an easy-to-read appointment calendar with large letters and numbers, or a chalk or bulletin board for recording the daily schedule.

Minimize problems in chewing and swallowing.

Avoid foods such as nuts, popcorn, and raw carrots which may get lodged in the throat. Instead grind foods or cut them into bite-size pieces. Pureed and frozen foods can be stored in plastic bags for later use.
Gently explain that the person should chew the food, eat slowly, and swallow.
Encourage the person to sit up straight with her head slightly forward. If the person's head tilts backward, move it to a forward position.
Serve soft foods such as applesauce, cottage cheese and scrambled eggs.
Serve thicker liquids such as shakes, nectars and thick juices, or serve a liquid along with the food.
Learn the Heimlich maneuver in order to help the person if choking occurs.

Experiment with solutions to decreased appetite.

Serve a glass of juice before the meal to stimulate the appetite.
Prepare some of the person's favorite foods.
Increase the person's physical activity.
Plan for several small meals rather than three large meals.
Give the person plenty to drink - especially in warm weather.
Consider the use of food supplements such as instant breakfast, eggnog mixes, yogurt and milk shakes.

Assist the person to function independently.

Serve finger foods or serve the meal in the form of a sandwich.
Serve food in large bowls instead of plates or use plates with rims or protective edges.
Use spoons with large handles instead of forks.
Set bowls and plates on a nonskid surface such as a cloth or towel.
Use cups and mugs with lids to prevent spilling and fill glasses half full; use straws that bend.
Use plastic tablecloths, napkins, or aprons to make cleanups easier.
Gently place the person's hand on or near an eating utensil.
Show the person how to eat by demonstrating eating behavior or by doing hand-in-hand feeding. After you get the first bite of food to the mouth, the person will often begin to eat.
Give the person plenty of time to eat. Keep in mind that it can take an hour or more to feed a patient.
Give the person the opportunity to eat with other family members for as long as possible.

Work to prevent eating and nutrition problems.

Use vitamin supplements only on the recommendation of a physician. Monitor their use.
Don't serve steaming or extremely hot foods or liquids. Remember, the person might not be able to tell if the food or beverage is too hot to eat or drink.
Limit or eliminate highly salted foods or sweets if the patient has a chronic health problem such as diabetes or hypertension.
Control potential weight gains. If the person always seems hungry, serve smaller portions of food at more frequent intervals. Fill the gaps between regular meals with healthy snacks.
After the meal is over, check to see that the person swallowed the food and nothing remains in the mouth.
Restrict portions when appropriate. A person with Alzheimer's may have no concept of how much she has eaten.
Keep in mind that the person may not remember when or if she ate. If the individual continues to ask about eating breakfast, you might consider serving several breakfasts - juice, followed by toast, followed by cereal.
Help the person maintain good oral hygiene. If it's difficult to use a toothbrush, try oral swabs. Keep in mind that regular visits to the dentist are important.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Mary Barringer, RN.C., Partner, Professional Care Management Services, Springfield, Illinois.

Special thanks to the following Chapters of the Alzheimer's Association: Atlanta, Georgia; Eastern Massachusetts; St. Louis, Missouri; Western New York; South Central Michigan, Columbus, Ohio; Cleveland, Ohio; Northern Virginia; and South Central Michigan.

Other Resources include:

David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Co. 1986.
Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Environment

Alzheimer's patients often can't remember where they are and sometimes see their surroundings as threatening because they are unfamiliar. The reason may not be in the environment, but in the feelings of disorientation that are part of Alzheimer's disease. While most people can easily distinguish among many different noises, colors, or patterns in a room, the person with Alzheimer's is more likely to feel confused or overwhelmed. This kind of overstimulation can make the person feel hostile or worried. For these reasons, you need to create a calm, quiet, familiar, enjoyable, comfortable, and organized home environment.

If the person feels safe and secure, you might be able to better manage problems of wandering, anger, or agitated behavior. Keep in mind that something as simple as rearranging the living room furniture or stepping into a neighbor's kitchen might be unsettling to the person with Alzheimer's. A familiar, well-organized living area helps both you and the patient. In looking at your living environment, you should consider some of the following tips.

Action Steps

Focus on consistency.

Strive for consistency. Keep furniture in the same place.
Help the person maintain a connection to the past with such familiar objects as old framed photographs, a favorite chair, cabinet or lamp, a piece of clothing such as a hat, or a wall hanging.

Use color and contrasts.

Work to achieve a calming effect through color. Instead of relying on bright primary colors such as stark white, yellow, orange, or red, use more soothing pastel shades such as peach, pink, beige, ivory, and light blues, greens and lavenders. In addition, use flat paint rather than semi-gloss or high gloss to prevent glare.
Use contrast. A person with Alzheimer's disease might not be able to distinguish between an off-white wall and a beige door or handrail. For this reason, you may want to have light walls and dark doors and handrails.

Pay attention to flooring.

Keep floor surfaces uncomplicated. The person might perceive checkerboard linoleum squares as holes and certain patterns as cracks to be avoided.
Use flooring that cuts down on glare. A shiny floor might prevent the person from seeing obstacles in his path. Some of the newer textured vinyls cut down on glare and are also less slippery.
Consider using carpeting to help absorb noise, or to prevent slipping. Because of problems with incontinence, some caregivers eliminate carpeting on the floor and run it part way up the wall.

Limit distractions.

Limit distractions and control noise. Provide soft, enjoyable background music and include some of the individual's favorite songs. In addition, control excessive switching of television channels and ringing of telephones.
Avoid lighting that casts shadows and might disturb the patient. Whenever possible, use natural light and focus it directly on the area where it is needed.

Consider special furniture.

Find nonabsorbent material to cover furniture or buy a comfortable recliner. If you purchase a special chair, make sure it has stable arms that extend past the seat so the patient can get up easily.

Orient the person.

Experiment with labels, pictures, and numbers that help orient the person and understand where he is.
Take responsibility for safety. Keep pathways clear and be especially aware of the dangers of cluttered furniture and throw rugs. In addition, use locks on doors and cupboards, and hidden switches or controls for the stove, thermostat and hot water heater.

Wall coverings make a difference.

Use wall hangings made of various textured materials. Many people with Alzheimer's enjoy feeling textured materials such as yarn or wool and find these decorations less disorienting than those made of mirrors or glass.
Avoid small, distracting wallpaper prints. In one nursing home, residents mistook the vines in a wallpaper pattern for snakes and began to beat on the wall. The individual might also try to pick flowers off the wallpaper.

Be aware of plants.

Use house plants for decoration, especially if they have been an important part of the person's life, but first make sure that the plants are nontoxic.
Consider the backyard or patio as part of the environment. Give the person an opportunity to garden, walk, or work outdoors in a safe, supervised area.

Pets in the house.

Use pets as part of the environment. Many people with Alzheimer's disease find great pleasure in watching fish or a bird. Just make sure that you supervise the activity and keep the aquarium or cage locked. Also keep in mind that the person might not be able to assist in caring for the pets.

Resources

Other Resources include:

David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
Howard Gruetzner. Alzheimer's: A Caregiver's Guide and Sourcebook. New York: John Wiley and Sons, Inc., 1988.
Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Hallucinations

Understanding the difference between hallucinations and delusions is important. A delusion is defined as a false idea, sometimes originating in a misinterpretation of a situation. When an individual has a delusion, she may think that family members are stealing from her or that she is in another place when she is actually still in her own home.

A hallucination, in contrast, is a false perception of objects or events, and is sensory in nature. When a person with Alzheimer's has a hallucination, she can see, hear, smell, taste, or even feel something that isn't really there.

Hallucinations are caused by changes within the brain that result from Alzheimer's disease. Hallucinations are visual and auditory. The person may see the face of a former friend in a curtain or she may see insects crawling on her hand. In other cases, the person may hear people talking to her and may even talk to the imagined person.

Hallucinations can be frightening to the person and the caregiver. On some occasions, the individual may see threatening images or just ordinary pictures of people, situations or objects from the past. Although you can create an environment to manage wandering, you won't be able to control the person' hallucinations or prevent them from occurring. Here are some ideas to follow for handling a person with hallucinations.

Action Steps

Obtain medical guidance.

Ask a physician to evaluate the person to determine if medication is needed or might be causing the hallucinations. In some cases, hallucinations are caused by schizophrenia, a disease different from Alzheimer's.
Have the person's eyesight or hearing checked or make sure that the person wears her glasses or hearing aid on a regular basis.
The physician can look for physical disorders such as kidney or bladder infections, dehydration, intense pain, or alcohol or drug abuse. These are conditions that might cause hallucinations. If the physician prescribes a medication, watch for such symptoms as oversedation, increased confusion, tremors or tics.

Assess and evaluate.

Assess the situation and determine whether or not the hallucination is a problem for you or for the individual. Is the hallucination upsetting to the person? Is it leading her to do something dangerous? Does the sight of an unfamiliar face cause her to become frightened? If so, react calmly and quickly and reassuring words and comforting touching.

Respond with caution.

Be cautious and conservative in responding to the person's hallucinations. If the hallucination doesn't cause problems for you, the person or other family members, you may want to ignore it.
Don't argue with the person about what she sees or hears. Unless her behavior becomes dangerous, you might not need to intervene.

Offer reassurance.

Reassure the person with kind words and a gentle touch. For example, you might want to say: "Don't worry, I'm here. I'll protect you. I'll take care of you," or "I know you're worried. Would you like me to hold your hand and walk with you for awhile?"
Gentle patting may turn the person's attention toward you and reduce the hallucination.
Look for the reasons or feelings behind the hallucination and try to find out what the hallucination means to the individual. For example, you might want to respond with words such as these: "It sounds as if you're worried" or I know this is frightening for you."

Use distraction.

Suggest that the person come with you on a walk or sit next to you in another room. Frightening hallucinations often subside in well-lit areas where other people are present.
You might also try to turn the person's attention to other features of the room. Other distractions include music, conversation drawing, looking at photos or pictures, or counting coins.

Respond honestly.

Keep in mind that the person may sometimes ask you about the hallucination. For example, "Do you see him?" or "Can you hear the children laughing?" You may want to answer with words such as these: "I know that you see something, but I don't see it." In this way, you're not denying what the person sees or hears, and you won't be getting involved in an argument.

Check out the reality of the situation.

Ask the person to point to the area where he sees or hears something. Glare from a window may look like snow to the patient and dark squares on a tiled floor may look like dangerous holes.

Modify the environment.

If the person looks at the kitchen curtains and sees a face, you may be able to remove, change or close the curtains.
Check the environment for noises that might be misinterpreted, for lighting that casts shadow, or for glare, reflections or distortions from the surfaces of floors, walls, and furniture.
If the person insists that she sees a strange person in the mirror, you may want to cover up the mirror or take it down. It's also possible that the person doesn't recognize herself.
On other occasions, you may want to turn on more lights and make the room brighter.

As a caregiver, you can ease the fears of the person with Alzheimer's disease by using words that are calm, gentle and reassuring. Remember that the hallucination is very real to the individual with the disease. Your goal is to support the person's feelings without agreeing with the hallucination.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter V. Rabins, MD, a geriatric psychiatrist and director of the Price Teaching Service and associate professor of psychiatry at the Johns Hopkins University School of Medicine, Baltimore, Maryland.

Special thanks to the following Chapters of the Alzheimer's Association: Indianapolis Area, Indiana; Eastern Massachusetts; South Central Michigan; and Cleveland and Greater Youngstown, Ohio.

Recognition is also extended to the State of New Hampshire Division of Elderly and Adult Services of the Department of Health and Human Services.

Other Resources include:

David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Safety

Sometimes the patient with Alzheimer's disease may feel confused and frightened. By creating safe and comfortable surroundings, you can help the person feel more relaxed and less overwhelmed. Keep in mind that the individual's behavior can influence the safety and security of other family members and residents. By adopting a safety first attitude, everyone feels more comfortable and secure. As you assess the environment, try to look at the world through the patient's eyes. A person with Alzheimer's can't understand the meaning of many actions and behaviors. For example, the patient might not remember why it's important to dress warmly in cold weather or why eating moldy foods is unsafe. Before you introduce specific safety precautions into your living area, consider the following points:

Focus on prevention, not teaching.

Rather than trying to teach or retrain the person to do things safely, you might be more successful by taking preventive action. For example, to guard against fires or accidental burnings, you may want to remove the knobs from your stove.

Take an adult approach.

Keep communication on an adult level. Help the person understand such safety hazards as smoking, and then work with him to change his dangerous behavior. You may need to take action by removing cigarettes or lighters, as the Alzheimer patient may forget how smoking can be dangerous.

Be patient and slow down.

Keep in mind that many accidents occur when the person with Alzheimer's is rushed. It takes time - sometimes more than a minute - for the person to understand or remember what to do or where to go. As the disease progresses, basic activities of daily living will probably consume even more of your time.

Simplify routines.

Keep in mind that many accidents occur in the area of personal care, involving activities of bathing, toileting, dressing, or eating. You can help avoid accidents by breaking down complicated procedures, guiding the person through a simple, step-by-step process, and giving the individual enough time to complete each task.

Create emergency plans.

Prepare a list of emergency phone numbers and addresses for the local police and fire departments. Include numbers for hospitals and poison control helplines.

Do what you think is best.

Rely on your common sense and do what you think is in the individual's best interests. Tradeoffs may be necessary in balancing the person's safety versus fulfilling the patient's privacy and need for independence.

Be reasonable in your approach to safety.

Be realistic about what you can do. You'll never be able to anticipate every risk or prevent every problem. In addition, there's no way you can experience the world in the same way as the person with the disease.

Action Steps

Be careful about any substance taken through the mouth.

Because the person with Alzheimer's doesn't understand the consequences of ingesting or eating foreign substances, poisoning or choking is a real threat. A patient might forget when medication was taken and, as a result, take twice as much medication or not take the medication at all. There are several steps you can take:

Purchase locks for kitchen cabinets that contain dangerous substances such as cleaning fluids; or move these substances to another location. Secure garages, basements and workrooms where toxic chemicals are kept.
Maintain a clean refrigerator. Keep in mind that the individual may not be able to distinguish between rotten food and edible food. Be prepared for the unusual. People with Alzheimer's have been known to eat such items as small rocks, dirt, and plants, flowers, and bulbs. Some caregivers remove toxic plants such as poinsettias or mistletoe from the home.
Recognize that people with Alzheimer's are unable to distinguish hot from warm or cool from cold. To prevent burning, test the temperature of food before serving it.
Be cautious about the bathroom medicine cabinet and toilet articles. Lock all medications away from the person.

Rid your house of guns.

Although a person with Alzheimer's might have once been able to handle a gun, serious accidents can occur. The best course of action is to lock the gun in a cabinet or drawer, or remove the gun from the house. Don't allow the patient unsupervised access to a gun.

Control alcohol.

Alcohol can have a variety of negative effects on an Alzheimer patient. Monitor the person's alcohol intake and contact your physician for advice. Alcohol should not be taken with certain medicines.

Be cautious about knives, appliances and electrical devices.

The person who once enjoyed working in the kitchen, basement or woodshed may no longer remember how to safely operate such appliances as a toaster oven, stove, coffee maker or such equipment as power tools, lawn mowers, or the barbecue. For example, a person who can't remember how to use a can opener may pick up a knife and start to jab at the can.
Try to distract the person from working in the kitchen alone or encourage him to come in when you are working or preparing food.
Many caregivers have learned that taking such bedtime precautions as locking up knives and taking the knobs off the stoves prevent accidents. If the person can't see a device or appliance, it may not pose a problem.
You might also want to turn off the gas and electricity in areas that could be dangerous.
Perform monthly checks of fire extinguishers and smoke alarms.

Take precautions about temperature, heat and cold.

Keep in mind that the person with Alzheimer's can't judge temperature. Often the individual may forget about the dangers of stoves, curling irons, or space heaters. In addition, the person might have a different sensitivity to heat or cold, and might not react to heat or cold quickly enough to prevent an accident. To avoid scalding, consider setting your home water heater at 140 degrees and help the person mix hot and cold water for bathing.

Take special precautions in the bathroom.

Mirrors, high-gloss surfaces, and glass can be frightening to the person with Alzheimer's disease. Some caregivers choose to cover mirrors to reduce the person's feeling of confusion. Use an electric razor for safety precautions. To reduce the chances for electric shock, remove all remote electrical appliances from the bathroom. To prevent falls, use such devices as grab bars, bath seats and commode chairs.

Use camouflage and other devices to prevent wandering.

To discourage the person from leaving an area, consider using such devices as safety door knobs, locks that are placed high and out of the patient's sight, a black rug on the floor in front of a door, a cloth or drape hung over a door, a Dutch-door, or electronic alert alarms.

Resources

Other resources include:

Alzheimer's Association, Atlanta Chapter, Guide to Home Safety for Caregivers of Persons with Alzheimer's Disease. Atlanta, GA, 1990.
David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Company 1986.
Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Sexuality

Focus on prevention, not teaching.

Take an adult approach.

Be patient and slow down.

Simplify routines.

Create emergency plans.

Prepare a list of emergency phone numbers and addresses for the local police and fire departments. Include numbers for hospitals and poison control helplines.

Do what you think is best.

Action Steps

Be careful about any substance taken through the mouth.

Purchase locks for kitchen cabinets that contain dangerous substances such as cleaning fluids; or move these substances to another location. Secure garages, basements and workrooms where toxic chemicals are kept.
Maintain a clean refrigerator. Keep in mind that the individual may not be able to distinguish between rotten food and edible food. Be prepared for the unusual. People with Alzheimer's have been known to eat such items as small rocks, dirt, and plants, flowers, and bulbs. Some caregivers remove toxic plants such as poinsettias or mistletoe from the home.
Recognize that people with Alzheimer's are unable to distinguish hot from warm or cool from cold. To prevent burning, test the temperature of food before serving it.
Be cautious about the bathroom medicine cabinet and toilet articles. Lock all medications away from the person.

Rid your house of guns.

Control alcohol.

Alcohol can have a variety of negative effects on an Alzheimer patient. Monitor the person's alcohol intake and contact your physician for advice. Alcohol should not be taken with certain medicines.

Be cautious about knives, appliances and electrical devices.

The person who once enjoyed working in the kitchen, basement or woodshed may no longer remember how to safely operate such appliances as a toaster oven, stove, coffee maker or such equipment as power tools, lawn mowers, or the barbecue. For example, a person who can't remember how to use a can opener may pick up a knife and start to jab at the can.
Try to distract the person from working in the kitchen alone or encourage him to come in when you are working or preparing food.
Many caregivers have learned that taking such bedtime precautions as locking up knives and taking the knobs off the stoves prevent accidents. If the person can't see a device or appliance, it may not pose a problem.
You might also want to turn off the gas and electricity in areas that could be dangerous.
Perform monthly checks of fire extinguishers and smoke alarms.

Take precautions about temperature, heat and cold.

Take special precautions in the bathroom.

Use camouflage and other devices to prevent wandering.

Resources

Other resources include:

Alzheimer's Association, Atlanta Chapter, Guide to Home Safety for Caregivers of Persons with Alzheimer's Disease. Atlanta, GA, 1990.
David L. Carroll. When Your Loved One Has Alzheimer's Disease: A Caregiver's Guide. New York: Harper and Row, 1989.
Donna Cohen, Ph.D. and Carl Eisdorfer, Ph.D., MD. The Loss of Self: A Family Resource for the Care of Alzheimer's Disease and Related Disorders. New York: Norton and Company 1986.
Lisa P. Gwyther. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.
Nancy L. Mace and Peter V. Rabins, MD. The 36-Hour Day. Baltimore: The Johns Hopkins University Press. 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Sundowning and Shadowing

People with diseases such as Alzheimer's often have behavior problems in the late afternoon and evening. They may become demanding, suspicious, upset or disoriented, see or hear things that are not there and believe things that aren't true; they may pace or wander around the house when others are sleeping.

Sundowning

While experts are unsure how or why this behavior occurs, they suspect that the problem of late afternoon confusion; which is sometimes called "sundowning," or "sundown syndrome," may be due to these factors:

The person with Alzheimer's can't see well in dim light and becomes confused.
The impaired person may have a hormone imbalance or a disturbance in his/her "biological clock."
The person with Alzheimer's tires at the end of the day and is less able to cope with stress. The person is involved in activities all day long and grows restless if there is nothing to do in the late afternoon or evening.
The caregiver communicates fatigue and stress to the person with Alzheimer's and the person becomes anxious.

Action Steps for Sundowning

Try these ways to lessen the behaviors of "sundowning":

Make afternoon and evening hours less hectic. Schedule appointments, trips, and activities such as baths or showers early in the day.
Help the person to use up extra energy through exercise. You may want to arrange at least one or two brisk walks during the day for the person who tends to pace or wander in the evening.
Control the person's diet. Reduce foods and beverages with caffeine (chocolate, coffee, tea, and soda), or restrict them to the morning hours to reduce agitation and sleeplessness. An early dinner or late afternoon snack may also help.
It is important to provide regular activities and you may want to discourage napping during the day if sleeplessness during the night is a problem.
You may want to reduce the level of noise from radios, televisions or stereos, control the number of people who visit in the evening hours, or confine noisier family activities to another area of the house.
Consult with your physician. Your physician may be able to prescribe medication to encourage sleep. At the same time, your physician can check for signs of depression, or for physical problems, such as prostate difficulties that might lead to frequent urination. This condition can cause pain and make sleep uncomfortable.
Make it easy for the person to use the bathroom. Consider a bedside urinal or commode, or encourage the person to use the bathroom before going to bed.
Keep rooms adequately lit. Good lighting may reduce the person's confusion. A nightlight may prevent the person from becoming agitated in unfamiliar surroundings.

Remain flexible and consider the person's needs.

While people with Alzheimer's may find it difficult to sleep in their beds, they may fall asleep more easily on the living room couch or in a reclining chair.
Reassure and comfort the person. Tell the person experiencing sundowning what time it is and what is going on in the house. Let the person know you are there and will remain there. Try to involve the person in a meaningful activity such as setting the table, folding towels, doing dishes, or sweeping the floor.
Avoid arguing or asking for explanations. The person may not know what's wrong or be unable to tell you if he does. Keep in mind that the person with Alzheimer's has no control over annoying, repetitive behavior. Confusion and restlessness occur because the brain can no longer sort out cues in the environment.

Remember to care for yourself.

Make sure you get adequate rest. Just because the person with Alzheimer's can't sleep at night doesn't mean you should go without sleep. Arrange for another family member to supervise the person at night; or arrange the room so that it is safe enough (and has locked doors) to let the person stay awake and pace there while you nap or sleep in another room.

Shadowing

"Sundowning" is often accompanied by "shadowing," where the person with Alzheimer's follows or mimics the caregiver, or talks, interrupts, and asks questions repeatedly. At times, the person may become upset if the caregiver wants to be alone. While shadowing and other forms of agitation vary from person to person, you may be able to manage the behavior by following these steps:

Action Steps for Shadowing

Examine factors that encourage agitation.

Consider these questions:

How long does the behavior last?
At what time of day does it occur?
Is the behavior triggered by certain people or surroundings?
What seems to calm the impaired person?

Once you develop answers to these questions, you may be able to avoid the situations that bring about agitation and introduce activities that help calm the person with Alzheimer's.

Protect your privacy.

You may want to install a childproof doorknob on the bathroom door or use a timer and reassure the person by saying, "I'll be back when the timer goes off."

Try to keep the person occupied.

Find simple, repetitious activities to occupy the person even if you could do them better on your own. Possibilities include folding the wash, dusting, stacking papers or magazines, stuffing envelopes, or winding a ball of yarn. You could also provide the Alzheimer's person with headphones for listening to calming music.

Consider "gum therapy" or "cereal therapy."

If the person with Alzheimer's is able to chew and swallow easily, you may want to give him/her sugarless gum. Consider providing the person with a nonbreakable bowl of high-fiber, low-sugar cereal. By having something to snack on, the person may be less inclined to talk or ask questions.

Rely on the ideas of support groups.

Caregivers are always discovering new ways to deal with behaviors such as shadowing and sundowning and are happy to share them.

A better understanding of the feelings of the person with Alzheimer's disease, such as fear, frustration, and anger, may help you accept the resulting behaviors. Providing reassurance and helping your loved one respond to his/her changing environment can help you mange the person's behavior.

Resources

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Peter V. Rabins, MD, MPH, Associate Professor of Psychiatry, Director of the Psychogeriatric Unit, and Director of the T. Rowe and Eleanor Price Teaching Service of the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine, Baltimore, Maryland. Dr. Rabins is the co-author, with Nancy L. Mace, MA, of The 36-Hour Day (Baltimore: Johns Hopkins University Press, 1991).

Special thanks to the following Chapters of the Alzheimer's Association: Eastern Massachusetts and Flint & Genesee Counties, Michigan.

Other Resources include:

Lin E. Noyes. Caregiving at a Glance. Family Respite Center, Falls Church, Virginia.
"Steps to Selecting Activities for the Person with Alzheimer's Disease," Alzheimer's Association, 1992.
"Documentation Guide," Alzheimer's Association, revised 1991.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Just the Facts and More: Wandering

There are many reasons why an Alzheimer patient wanders or walks away from home or a well-known path or area. As a first step, try to determine the reasons behind wandering by asking these questions:

Medication

Some medications have side effects that result in confusion and restlessness. Is the patient on such medication? If so, consult your physician.

Stress

Is the person trying to handle stress, noise, unpleasant people, crowding, or isolation? If so, consider changing the situation.

Time confusion

Does the person become confused during certain parts of the day, such as the middle of the night or early evening? Does the person claim that people have been gone for days or weeks and then searches for them?

Basic needs

Is the person looking for something specific such as food, drink, the bathroom, or companionship?

Restlessness

Does the person have enough movement and activity during the day? Is it possible that the person wanders in order to get up and move around?

Lack of recognition

Is the person in a new or changed physical environment that makes him want to search for familiar objects, surroundings or people?

Fear

Is the person trying to escape from something frightening? Is the person experiencing a delusion or hallucination, or has the person simply misinterpreted sights and sounds?

Past behavior

Is the person trying to meet former obligations involving a former job, home, friend, or family member?

Other factors that may contribute to wandering include medical conditions such as stroke or other factors such as consumption of alcohol, changes in the weather, or feeling abandoned, useless or helpless. Wandering may be frustrating and irritating for caregivers, but it becomes a problems only when the person moves into an unsafe or unhealthy area or climate, puts others at risk or invades others' property.

For this reason, many people who care for Alzheimer patients decide to overlook wandering behavior until it becomes dangerous to the patient and to others. They may even permit the person to wander within safe boundaries or follow the individual on special outings.

Action Steps

Be Prepared.

Be aware that wandering may or may not happen. There is no way to predict who will wander or when and how it might happen. Some people never get lost and others get lost frequently. The best advice is to be prepared. If the person has a daily exercise routine and hasn't yet wandered, you needn't be overly concerned. However, once the person begins to wander or gets lost, you should watch him more closely.

Encourage movement and exercise.

Allow the person to move within safe areas or make a shared exercise such as walking part of your daily routine. Although walking in a circle might seem unusual, keep in mind that physical activity - from walking and sweeping, to rolling yarn or folding clothes - is a positive experience for the person with Alzheimer's.

Be objective.

Don't take the person's wandering behavior personally. The individual is probably trying to make sense of a world that no longer seems predictable.

Be aware of hazards.

Remember that places that look safe might be dangerous for the person with Alzheimer's. For this reason, you should review the environment around your home for possible hazards, such as fences and gates, bodies of water, swimming pools, dense foliage, tunnels, bus stops, steep stairways, high balconies, and roadways where traffic tends to be heavy.

Secure your living area.

Do whatever you can to keep your home safe and secure. Place locks out of the normal line of vision - either very high or very low - on doors. In addition, use a double bolt door lock, keeping the key handy for emergencies. Also use a childproof door knob that prevents the person with Alzheimer's from opening the door. Other effective safety actions include the following:

Put hedges or fences around your patio or yard;
Place locks on gates;
Consider electronic buzzers, infrared electronic eye alarms or chimes on your doors;
Camouflage some doors with a screen or curtain, or put a two-foot square of a dark color in front of the doorknob;
Use a recliner or rocking chair; the person may then need assistance to get up;
Use nightlights, signs, and familiar objects to help the person move around in a safe area;
Put gates at dangerous stairwells.

Communicate with the person.

Remind the person that you know how to find him and that he is in the right place. If possible, take the person for rides in cars or buses in addition to providing regular activity and exercise. Continually reassure the person, who may feel lost or abandoned.

Identify the patient.

Investigate local the Alzheimer Chapter's identification program. You may want to invest in a discrete identification bracelet or locket that includes the person's name, telephone number, memory problem, and medical condition. Some experts even recommend putting identification on the person's dentures or attaching a sensor to the patient's ankle or wrist. In addition, choose bright-colored clothing and mark it with sew-on or iron-on label, permanent marker, or reflective material. Also identification may be placed on the person's shoes, eye glasses and keys.

Involve your neighbors.

Inform your neighbors of the person's condition and keep a list of their names and telephone numbers handy. Although neighbors can be helpful in guiding the person home, you'll probably want to teach them how to approach the person with Alzheimer's disease by using these steps:

Approach the person from the front;
Introduce yourself and call or ask his/her name;
Gently look for or ask to see identification;
Offer help and reestablish the day, date, and time;
Avoid pulling or pushing the person;
Report the patient found

Involve the police.

Some police departments keep a photo and fingerprints of people with Alzheimer's on file. Many local Alzheimer's Association Chapters sponsor some kind of identification program to help with wandering patients. If a person with Alzheimer's become lost, take a photo and an article of unwashed, worn clothing in a plastic bag to the police. Also have data on the following items:

Age
Hair color
Blood type
Eye color
Identifying marks
Medical condition
Medication
Dental work
Jewelry
Allergies
Complexion

Offer suggestions about where the police might find the patient, such as old neighborhoods, former work places, or favorite places.

Be prepared for other modes of wandering.

Although most wandering takes place by foot, some individuals with Alzheimer's disease have been known to drive 300 miles - sometimes in an automobile that belongs to someone else. You can prevent these problems by keeping car keys out of sight or by temporarily disabling the car by removing its distributor cap.

Special Recommendations for
Long-term Care Facilities

Use medication with caution.

Keep in mind that no medication controls wandering. If medicated, some patients actually become more agitated. Other medications bring about complications related to immobility.

Respond to wanderers as individuals.

Keep the patient busy in full view of the staff and help the patient develop a walking route around the facility.

Develop a procedure for handling missing residents.

Be sure to include such steps as searching the facility, calling the administrator and notifying a family member who will then notify the police. In some cases, the facility may need to notify the police.

Inform people about how to approach a patient.

Invite local police, firefighters/paramedics, business people and family members to inservice workshops on how to help wanderers. Help them understand that wanderers should be approached calmly, reassured and guided back to the facility.

Resources

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

One of the best places to turn for additional help is the Alzheimer's Association. The Alzheimer's Association has more than 83 Chapters and 1,600 support groups nationwide, where family members of people with Alzheimer's disease or a related disorder share their experiences, provide each other with emotional support, hear practical suggestions and learn to rebuild their lives.

The primary resource for this fact sheet was Lisa P. Gwyther, ACSW, educational director of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center of Duke University, Durham, North Carolina.

Special thanks to the following Chapters of the Alzheimer's Association: Honolulu, Hawaii; Indianapolis Area, Indiana; Topeka, Kansas; Eastern Massachusetts; Southeastern Wisconsin and South Central Michigan.

Other Resources include:

Lisa P. Gwyther. "Care of Alzheimer's Patients: A Manual for Nursing Home Staff." Washington, DC: American Health Care Association, and Alzheimer's Disease and Related Disorders Association. 1985.

(Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.)

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Possible Causes of Challenging Behavior

Physical/Emotional Health
- Medication
- Impaired hearing and/or vision
- Acute illness
- Chronic illness
- Dehydration
- Constipation
- Depression
- Fatigue
- Physical discomfort

Environment
- Too large
- Too much clutter
- Excessive stimulation
- No information or cues given
- Poor sensory environment
- Unstructured environment
- Unfamiliar environment

Task
- Too complicated
- Too many combined steps
- Not modified for increasing impairments
- Task may be unfamiliar
  Hint: Try first tasks learned in childhood.

Communication
- Look directly at the person
- Speak slowly
- Use short sentences
- Use concrete / familiar terms
- Ask "yes" or "no" questions
- Talk in a warm, easygoing manner
- Keep voice-pitch low
- Do not argue
- Listen to person with AD (Alzheimer's Disease)
- Try to stay calm and be patient

Remember - The caregiver sets the tone.

Source: Lela Knox Shanks, 1994

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Safe Return

What Would You do if Your Loved One Became Lost?
Safe Return

For safety and peace of mind

The Alzheimer's Association's Safe Return program was created to assist emergency services and private citizens identify people with Alzheimer's disease and help them return home quickly.

Safe Return provides:

Assistance in locating a missing person
When a person registered in Safe Return is lost, the family can contact the program's emergency 800 number. Callers receive guidance on searching the area, contacting the police, and reporting the person missing. If necessary, a "missing person" notice is created and distributed in areas where the person may have traveled. Safe Return stays in contact if a search is initiated and offers advice to caregivers afterward.

Help for a lost or disoriented individual
Someone who finds a lost person can call the national 800 number listed on the person's Safe Return identification item (jewelry, clothing label or wallet card). Safe Return operators are available to help 24 hours a day, seven days a week. Registration with Safe Return provides:

Identification items for the memory-impaired person, including a bracelet or necklace, clothing labels and a wallet ID card (also available for caregivers).

A nationwide, toll-free 800 number to contact when someone is lost or found.

Registration of important contact information in a national computer database.

Information about how to reduce wandering and what to do when a loved one becomes lost.

Connection to more than 83 community-based Alzheimer's Association chapters across the country who provide information and support to families.

Registration
Contact your local chapter (see below) to request a registration form. A nominal registration fee helps offset the cost of registration and identification items.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter , 402-502-4301 or 1-800-272-3900 (Helpline)

The Six "R's" of Behavior Management

Restrict
Try to get the person to stop what he is doing, especially if the person might harm himself or others. Remember, though, trying to make the person stop, may upset him more.
Reassess
Ask yourself:
- Might a physical illness or drug reaction be causing the problem?
- Might the person be having difficulty seeing or hearing?
- Is something upsetting him?
- Could the annoying person or object be removed?
- Might a different approach upset the person less?
Reconsider
Ask yourself how things must seem from the patient's point of view. People with dementia are often unaware of the extent of their impairment. When you try to bathe or dress someone who does not understand that he needs help, he may get upset. The person's anxiety is understandable when things are going on that he can't make sense of.
Rechannel
Look for a way that the behavior can continue in a safe and nondestructive way. The behavior may be important to the person in some way that we cannot understand.
Reassure
When a person has been upset, fearful, or angry, take time to reassure him that things are all right and that you still care for him. While the person may not remember the reassurance, he may retain the feeling of having been reassured and cared for. Take time to reassure yourself - you are doing the best you can with a demanding and difficult job.
Review
Afterward, think over what happened and how you managed it.
- What can you learn from this experience that will help you next time?
- What led up to this behavior?
- How did you respond to it?
- What did you do right?
- What might you try next time?

Source: Mace, N. and Rabins, P. 1991. "The 36-Hour Day." Baltimore: The Johns Hopkins University Press.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Tips for Caring for a Person with an Impaired Memory

Courtesy of Geriatric Assessment Program, University Geriatric Center, Omaha, Nebraska.

Memory aids, such as clocks, calendars and simply-worded notes, may help the person remain oriented.
Much of what you say to the person may soon be forgotten. Be prepared to repeat yourself, sometimes often.
Use a calm voice and respond to a question with brief, simple statements. Try using touch and direct eye contact when responding in order to emphasize what you say. Avoid presenting the person with more than one thought at a time, and limit choice options ("Either this or that").
Distract the person from an irritating or repetitive topic by using a word from the conversation to change the subject. Try such pleasurable distractions as taking them for a walk or drive, looking through family photos, playing music or giving the person a simple repetitive task to perform, such as folding towels.
If distractions fail, try ignoring repeated questions. This may anger or agitate the person, but the questions may stop if they are not reinforced by your behavior. Ignoring may be an especially good idea when you are irritated. It may keep the person from picking up on your angry tone of voice.
Most memory-impaired persons function best when they follow a familiar routine in familiar surroundings. Avoid abrupt and frequent changes of routine, location, and social situation. Avoid discussing plans for activities or appointments until just prior to the event so the person does not worry and ask repeated questions days ahead of time.
Allow the person to do as much for themselves as they possibly can, even if they are slower and less efficient. Positive reinforcement and praise helps them maintain social and self-care skills. When correcting or directing them, avoid negative commands ("Don't do…"). Use the positive focus ("Let's do…").
If the person's memory skills continue to worsen over time, closely monitor their performance of tasks and be prepared to lower your expectations for their performance. Try to take over a task completely only when they cannot perform it even with step-by-step instructions or help. Tasks that involve complex reasoning or present safety problems (such as driving, using appliances or managing financial affairs), may have to be assumed by others sooner rather than later.
While you should honestly acknowledge to the person that he/she has a memory problem, confronting the person with their loss of ability may lessen their sense of dignity and self-esteem. Try to remind the person how much they can still do for themselves. Reassure them that they are still loved and valued.
To include the person in social conversations, refer to positive memories of the past. Don't discourage reminiscence, as the person is better able to remember past events than they are present ones.
Suggest a word or name the person may be searching for in conversation, but avoid correcting mistakes already made. Contradicting or arguing with the person may only cause upset and humiliation.
Prevention is the most effective approach to reduce behavior problems. Anticipate and avoid activities and discussions that will provoke anger or agitation.
Try to determine a reason for a troublesome behavior. Is the person trying to communicate feelings of fear, pain, hunger or the need to toilet? Respond to the need or emotion you feel the person is trying to express.
If the person becomes extremely agitated or verbally or physically threatening, remove him/her from the stressful situation or place. Try to calm the person with slow movements, a soothing and reassuring voice and gentle touch. Do not try to reason with the person, as their ability to understand logic and reason is impaired. If you feel threatened, remove sharp or dangerous objects from the area and stay out of reach. Leave and seek help if necessary.
Make note of when a catastrophic reaction occurs. Is there a pattern - such as, time of day, type of activity, specific person -- that can be identified? Simplify the environment by reducing extra people, clutter, noise and activity. Soft music or holding a doll or a stuffed animal may ease agitation and calm fears in a severely impaired person.
While use of medication to control behavior should be avoided, medications may be necessary to control depression, hallucinations, paranoia, sleeplessness and extreme agitation. Discuss this with your doctor.
Try to discuss openly and honestly the person's memory and behavior problems with family, friends, neighbors and others who will have regular contact with him/her. People tend to respond more appropriately and offer assistance when they understand the situation.
Emotional support and respite from caregiving duties are essential to helping you cope. Arrange for someone else to assume your caregiving duties for several hours at a time on a regular basis so you can get out and "recharge your batteries." You can not provide good care for your loved one if you neglect your own needs.
Consider joining a self-help or support group. These offer an excellent setting in which to express your feelings and learn creative approaches to solve the challenges you face in providing care. Your local Area Agency on Aging or regional chapter of the Alzheimer's Disease Association can direct you to such groups.
Be patient with yourself. Recognize that you will make mistakes and will become angry and impatient at times. Know your own limits and try not to feel guilty when you have to say "no" to others. Remember, you are only human!

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Tips for Sleeping through the Night

Many people with memory loss and confusion are restless at night. Here are some simple things you can do during the day to help the person you're caring for have a quiet night's rest.

Eliminate Alcohol and Avoid Caffeine

Alcohol can increase anxiety. Try serving nonalcoholic drinks in cocktail glasses.
Offer nonalcoholic beer and wine.
In addition to coffee, many foods and beverages such as chocolate, black tea, and soft drinks have caffeine.

Plan a Regular Activity Program

Make sure the person gets some exercise or is involved in a daytime activity. For example, many people find a ride in the car enjoyable.
Take a long walk, preferably in the later afternoon.

Prevent Daytime Napping

Keep the person active and awake during the day.
If naps are necessary, keep them short and earlier in the day.
Try to get the person up earlier if he or she sleeps late.

Help the Person Relax

Try playing soft music at bedtime.
Avoid upsetting activities before bedtime.
If taking a bath or putting on pajamas upsets the person, try doing it earlier in the evening or not at all.
Give the person a relaxing back rub or leg massage.

Make the Nighttime Environment

Make sure the way to the bathroom is softly, but clearly lit.
Keep the area around the bed clear.
Block stairs, lock doors and windows, and lock up dangerous items such as scissors or knives.
If you sleep in a separate area, consider using a room monitor, such as those used for infants, so that you can hear the person.
Put a commode next to the bed if finding the bathroom is a problem.
Try gently guiding the person back to bed. He or she may have forgotten that it is time to sleep.

Have a Bedtime Routine

Try to do the same things each night before bed, such as watching TV or listening to music.
Use the bed only for sleeping, not for other things like reading.

Make the Person Comfortable

Adjust the room temperature to make the person comfortable.
Have extra blankets available.
Make sure the person's bed, pillow and nightclothes are comfortable.
With the doctor's approval, treat pain with aspirin or aspirin substitute at bedtime.
Ask the doctor to evaluate any medications which may cause sleep disturbances, including those that are diuretics.
Try keeping a diary or log of activities, foods, beverages and medications to help pinpoint the possible cause of sleep trouble.

Make Sure the Person Isn't Hungry

Try a light snack, such as crackers or toast, before bedtime.
If getting up at night to use the bathroom is not a problem, warm milk or herbal tea can be soothing and may help the person feel sleepy.

Prepare the Person for Sleep

Make sure he or she goes to the bathroom before going to bed.
Let the person sleep on the couch or in an armchair if he or she refuses to go to bed.
If changing into pajamas is a problem, let the person sleep in his or her clothes.

Create a Familiar Sleeping Area

A favorite blanket or pillow can help the person feel relaxed.
Use a nightlight in the room to help the person know where he or she is.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.

For further information about Alzheimer's Disease or related disorders, contact the Alzheimer's Association at:

Alzheimer's Association of the Great Plains, 402-420-2540 or 1-800-487-2585 (Helpline)
Midlands Chapter, 402-572-3010 or 1-800-309-2112 (Helpline)

Understanding Why Difficult Behaviors Occur: Problem-solving Strategies

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 bathing - 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 to which caregivers should be alert.

Effects of medications. 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 of 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 illnesses. 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 illnesses. 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. This may be caused by the person's immediate needs not being met. For example, the person may be hungry, the person may need to use the bathroom, or 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 the 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 and 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. Was there 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, the use of colors, and visual contrasts between floors and walls 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 that is new or unfamiliar is more likely to confuse 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 with 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 that enables a person with dementia to continue to do tasks successfully.
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 Section 2- "The Importance of Good Communication Skills."

Problem-solving

When you are faced with a difficult behavior or situation, try to understand why this behavior is occurring. What are some of the factors triggering the behavior? Can they be changed? 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 abut what was going on right before the behavior occurred. Who was involved? Who was affected by the behavior? What emotion did the confused person express? 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. Think of the four categories above, and try to pinpoint specific causes. Is the problem related to the person's health? To the environment? To the task in which the person may be engaged? To the style of communication between the caregiver and the person?
Be creative. Develop a list of alternative strategies for responding to the behavior or situation. 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 will try first. Don't worry if it fails. You are gaining new information about the situation even if the approach doesn't work.
Be flexible. Problem solving is a process of trial and error. There are no simple solutions. You may no sooner solve one problem than another develops. You may even find that your solution works sometimes, but not others.
Reassure the person after an upsetting situation. Let him/her know that you understand and care.
Remember: an organic brain disease causes the behavior. The person is not deliberately trying to be nasty, stubborn, or annoying.
Don't try to carry the entire burden yourself. It is okay to ask for help.

References

Source: Robinson, A., Spencer, B., and White, L. "Understanding Difficult Behaviors". (1989). Ypsilanti, Michigan: Eastern Michigan University.

Weaverdyck, S. (1989). Neuropsychological assessment as a basis for intervention in dementia.

"Dementia Care: Patient, Family and Community." Baltimore: The Johns Hopkins University Press. (The conceptualization of the above assessment process is from the work of this author.)

Zarit, S., Orr, N., Zarit, J. (1985). "The Hidden Victims of AD: Families under Stress." New York: New York University Press.

Compiled by the Lincoln/Greater Nebraska Chapter of the Alzheimer's Association, 1999.