Challenging Behaviors for the Caregiver
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Agitation in Older Persons with Dementia
Consensus Guideline Series
A Guide for Families and Caregivers
If someone you care about has been diagnosed with dementia, you may feel that you are the only person facing the difficulties of this illness. But you are not alone. In the United States, more than 10% of the population over age 65 has dementia (more than 4 million Americans). As people in our society live longer, in better overall health, it is sad that many of us have to face the decline in memory and thinking of someone we love-we slowly seem to lose the person we knew even while life continues.
Living with someone who has dementia can be painful, confusing, and stressful. Although dementia is a disorder of memory, many people affected by it also develop agitation, making it much harder to care for them. Even under the best circumstances, families are often surprised by how angry or guilty they feel when they lose patience with their loved one.
But there is good reason to be optimistic. There are many things you can do to help your loved one and yourself. Support groups and national organizations offer practical advice that can help you solve problems and feel better about the job you are doing. You can learn about ways to go about daily routines and activities that help a person with dementia feel calmer and more secure, reducing his or her agitation. There are also medicines that can help. In this guide, we discuss these strategies for reducing agitation, which are based on the recent recommendations of a panel of expert doctors.
WHAT IS DEMENTIA?
The term dementia refers to a severe loss of thinking abilities, especially memory. It occurs most often in later years and is especially frequent in those over age 85. Some memory loss is normal as we age, but dementia is not. Many of us may worry that we are becoming "senile" if we become slightly forgetful or absent-minded, but these normal memory changes remain mild and do not impair our functioning. In contrast, dementia progresses to more and more serious problems, usually over several years. If you have any question, a doctor can help determine the difference for you.
Dementia is always caused by an underlying disease that damages brain tissue, leading to disturbed brain functioning. The most common such diseases are Alzheimer's Disease and strokes (vascular disease). There are also less common causes, including Parkinson's Disease, alcoholism, head injury, and others.
Alzheimer's Disease causes gradual death of brain tissue due to biochemical problems inside individual brain cells. There is important research underway to determine the exact cause of the abnormality, which is not yet known. There are promising medicines that sometimes slow the pace of memory loss in Alzheimer's Disease-we will not be discussing them in this guide, but you may want to ask your doctor about them. Researchers are working to find even better treatments, as well as better tests to tell if someone has Alzheimer's Disease, since it is often hard to make a clear diagnosis in the early stages. To learn more about these and other research advances, you can contact one of the organizations listed at the end of this guide.
A stroke occurs when a blood vessel in the brain is blocked or leaking. As a result, oxygen does not reach the area supplied by the blood vessel, and a section of the brain is damaged or dies (called an infarct). This causes a sudden loss of the functions performed by that section of the brain. Depending on its location, a stroke can cause loss of thinking abilities, of muscular control, or of sensation, or combinations of these. Dementia can result from a single large stroke, or the accumulated effect of many small strokes (multi-infarct or vascular dementia). Agitation after a stroke can be very severe. Stopping smoking and maintaining normal blood pressure and cholesterol levels all help prevent strokes. Medicines such as aspirin are also used to prevent some types of strokes. Your doctor will be familiar with these preventive approaches.
When an older person appears to have major changes in memory or thinking, a complete medical evaluation is essential. The evaluation determines if the problem has a temporary cause that can be easily reversed (such as an infection, a drug side effect, or a hormone deficiency), or if there is truly ongoing dementia from an underlying condition such as Alzheimer's Disease or strokes. The doctor will perform a complete physical examination, including special neurological and memory tests, and will probably take blood tests. A specialized picture of the brain (such as a computed tomography [CT] scan or a magnetic resonance imaging [MRI] scan) is also sometimes taken.
WHAT IS AGITATION?
Many people with dementia experience emotional distress or behavioral changes best summed up by the term agitation. Very mild agitation may seem like a personality change in which a person acts in ways that are uncharacteristic or inappropriate for him or her, such as being very stubborn, worried, or nervous. More severe agitation forces caregivers to constantly supervise or reassure the person. These distressing symptoms can be disruptive or even dangerous. Agitation tends to persist and grow worse over time, and severe agitation is often the reason that families eventually decide to place loved ones in nursing homes. Here are some behavioral problems you may encounter:
We will discuss four problems that can cause agitation: physical and medical problems; environmental stresses; sleep problems; and psychiatric syndromes (psychosis, anger and aggression, depression, and anxiety). Remember that, in all these situations, a person with dementia is more easily agitated because the brain has physically changed and no longer functions in a healthy manner.
If a person with dementia has recently become agitated for the first time or has a change from his or her usual behavior, the first thing to look for is a medical or physical problem.
Sudden illnesses may weaken the brain, causing worsened agitation. Your doctor might use the term delirium to describe an episode of agitation and confusion that begins suddenly because of a medical illness. Delirium improves when the medical problem gets better. The most common medical problems that can cause agitation or delirium are bladder infections, bad colds, bronchitis or pneumonia, and dehydration or poor nutrition (especially in people who forget to eat or can't feed themselves). It is also very important to make sure that someone who has become more agitated has not recently had a new stroke or been injured in a fall. Finally, flare-ups of chronic diseases such as diabetes or diseases of the heart, liver, or kidneys can cause agitation or delirium, especially if a person with dementia cannot take medications reliably or follow a special diet.
A toxic reaction to medication is an important cause of sudden confusion and agitation. Older people often take many different medications that can interact with each other. It is crucial to find out if side effects of a new prescription, interactions between medicines, or taking the wrong dose have led to a bad reaction.
Common physical problems that cause pain, discomfort, worry, or lack of sleep can lead to agitation by making the person upset or fatigued. Examples of such problems include arthritis, sitting all day in an uncomfortable position, constipation, and impaired vision or hearing.
People with dementia are very sensitive to the environment they live in. They are less able to handle changes, uncertainty, and other situations that they could manage when they were well. The ideal environment for a person with dementia provides clear, calm, comforting structure---often not an easy task to arrange. Routine is very important, since changes in schedule or rushing can cause extreme disappointment, frustration, or fear. A physically comfortable environment is important. Noisy, poorly lit, or improperly heated areas can cause increased agitation. Extremes in the social environment can also cause problems (for example, if someone is left alone for long periods, or is overwhelmed by being around too many people). Medical or dental procedures, and especially hospitalization, are particularly disruptive and can lead to sudden agitation or confusion in a person who was calm at home.
Sleep problems are common in dementia. One type of problem is insomnia---trouble falling asleep at night or waking up throughout the night. Although the cause is often unclear, it is sometimes possible to pinpoint a reason that can be corrected---such as busy activities just before bedtime, using caffeine or alcohol, or drinking fluid before bedtime and then having to urinate. Conditions such as depression, nervousness, or physical pain can also cause insomnia. It also helps to keep in mind that many people need less sleep as they age, but that the person with dementia has a very hard time finding purposeful things to do during longer waking hours.
"Sundowning" is another type of sleep problem. Sleep patterns are controlled by an internal clock in our brain that senses day and night, telling us when to rest and when to be active. This clock is often damaged in dementia. The person may be awake and over-active at night, thinking it should be daytime and trying to get dressed and out of bed. This type of confusion, disorientation, and agitation is called sundowning because it usually begins in the early evening in a person who might otherwise be fairly clear-headed when awake during the daylight hours.
Psychosis, aggression or anger, depression, and anxiety are common psychiatric syndromes seen in agitated persons suffering from dementia.
Agitation should be treated early, because it means the person with dementia is suffering emotionally or physically. Agitation doesn't go away by itself. Research studies show that it usually persists for 2 or more years, especially if it is associated with aggressive behavior. If treatment is begun early, there is an opportunity to find the most effective and safest treatment before agitation poses safety or health risks for the person or the family.
There are a number of ways that you and the clinicians working with you can help an agitated person:
Providing the right environment
Learning how to talk with a person who has dementia
Getting support for families and caregivers and improving coping skills
It is important to evaluate the person's environment---his or her bedroom, daytime areas, and schedule---to see if any of the following problems may be contributing to agitation:
Some individuals become particularly agitated at specific times of the day. Would it help to change the person's routine to avoid these problems? It is helpful to try to do things in the same place at the same time each day.
Agitation may result from thirst or hunger. If a person with dementia forgets to eat, offer frequent snacks and beverages.
Agitation may result from physical discomfort. Has the person remembered to use the bathroom? Is he or she constipated? Could there be aches and pains from sitting in one place?
Does the person have a regular, predictable routine? Unexpected changes or last minute rushing can cause those with dementia to become scared and disoriented.
Getting dressed can be frustrating for someone with dementia. Try to simplify this task, for example, by using Velcro fasteners and not insisting on matched outfits.
Is the person feeling rushed, overwhelmed, hungry, tired, scared, constipated, cold, or hot? Does he or she need to use the bathroom? Fresh air or air conditioning can minimize agitation. It is also important not to rush individuals with dementia. Simplify dressing by using Velcro fasteners. Don't insist on matched outfits.
Is there a chance for regular exercise? Walks and simple exercises are good ideas. If a person wants to pace and isn't disrupting anyone, that's OK, too.
Is the room well lighted? Good lighting can help to reduce disorientation and confusion. Provide night-lights.
Is the air temperature comfortable? Try to provide fresh air, heating, or air conditioning as needed.
Is the environment too noisy or confusing? Are there too many people around? It may be helpful to use picture cues, to personalize the room, and to decorate and highlight important areas with bright contrasting colors.
Is the environment safe? If not, take the necessary steps to ensure the safety of the patient and caregiver (e.g., lock up knives and guns, take knobs off the stove at night, put safety latches on doors, camouflage unprotected exits, install inconspicuous locks to restrict access to cleaning solutions and other hazardous substances or poisons).
People who are getting agitated can sometimes feel better if they have something useful or interesting to do. However, they usually need direction to find appropriate activities and to prevent frustration. Here are some suggestions that can help:
Structure and routine. Try to follow regular predictable routines that include pleasant, familiar activities. Remind the person that everything is going according to plan.
Pleasant activities. Make time for simple pleasant activities the person knows and enjoys---listening to music, watching a movie or sporting event, sorting coins, playing simple card games, walking the dog, or dancing can all make a big difference.
Keep things simple. Break down complex tasks into many small, simple steps that the person can handle (e.g., stirring a pot while dinner is being prepared; folding towels while doing the laundry). Allow time for frequent rests.
Redirect. Sometimes the simplest way to deal with agitated behavior is to get the person to do something else as a substitute. For example, a person who is restless and fidgety can be asked to sweep, dust, rake, fold clothes, or take a walk with the caregiver. Someone who is rummaging can be given a collection of items to sort and arrange.
Distract. Sometimes it is enough to offer a snack or put on a favorite videotape or some familiar music to interrupt behaviors that are becoming difficult.
Be flexible. Your loved one might want to do some activity or behave in a way that at first troubles you, or may refuse to do something you have planned, like taking a bath. Before trying to interfere with a particular behavior, it is important to ask yourself if it is important to do so. Even if the behavior is bizarre, it may not be a problem, especially in the privacy of your own home.
Soothe. When the person is agitated, it may help to do simple, repetitive activities such as massage, hair-brushing, or giving a manicure.
Compensate. Help the person with tasks that are too demanding. Don't put the person in a position where demands will be made that he or she cannot handle.
Reassure. Let the person know that you are there and will keep him or her safe. Try to understand that fear and insecurity are the reasons the person may "shadow" you around and ask for constant reassurance.
Getting to doctor appointments. Is the person upset about going to the doctor or dentist? Here are some helpful hints: Emphasize the value of a check-up, rather than a test for a specific problem. Try to figure out if your relative is the type of person who does better with advance notice in order to prepare, or does better without being told ahead of time. Present the trip in a matter-of-fact manner as part of the day's plans. Allow enough time so that you are not rushed. If possible, have the relative or caregiver who works best with the patient come along to the appointment. If the person resists, don't argue; instead, try distractions like "We will go out to lunch afterward."
People with dementia often find it hard to remember the meaning of words that you are using, or to think of the words they want to say. You may both become frustrated. The following tips can help you communicate more effectively with a person who has dementia:
It is understandable that you may feel angry; but showing your anger can make the agitation worse. If you are about to lose you temper try "counting to ten," remembering that the person has a disease and is not deliberately trying to make things difficult for you.
Try and talk about feelings rather than arguing over facts. For example, if the person with dementia is mistakenly convinced you didn't see him yesterday, focus on his feelings of insecurity today: "I won't forget you."
Identify yourself by name and call the person by name. The person may not always remember who you are; don't ask "Don't you remember me?"
Approach the person slowly from the front and give him or her time to get used to your presence. Maintain eye contact. A gentle touch may help.
Try to talk in a quiet place without too much background noise such as a television or other people in conversation.
Speak slowly and distinctly. Use familiar words and short sentences.
Keep things positive. Offer positive choices like "Let's go out now," or "Would you like to wear your red or blue cap?"
If the person seems frustrated and you don't know what he or she wants, try to ask simple questions that can be answered with yes or no or one-word answers.
Use gestures, visual cues, and verbal prompts to help. For example, if suggesting a walk, get out the coats, open the door, and say "Time for a walk." Set up needed supplies in advance for tasks such as bathing and getting dressed; have a special signal for needing to go to the bathroom. Try to break up complicated tasks into simple segments; physically start doing what you want to happen.
If a subject of conversation makes a person more agitated or frustrated, it may help more if you drop the issue rather than keep on trying to correct a specific misunderstanding. He or she will probably forget the issue and be able to relax in a short while.
Some of the behaviors that you see in your loved one may be very difficult, exhausting, and even frightening. When you feel frustrated, try to remember that these behaviors are part of the disease that has affected the person's brain. Many caregivers struggle with feelings of guilt and anger, and need support and reassurance to remember that the disease is creating the behavior, not the person they once knew.
Social support is important for caregivers, whose own mental health can be affected by the stress and sadness of helping someone with severe dementia and agitation. There are a number of sources of help, including organizations, newsletters, books, and computer sites on the Internet---many of these are listed at the end of this guide. Joining a support group allows caregivers to meet and share ideas with others who are coping with similar problems. Group members who have "been there" often have good ideas for dealing with day-to-day problems. You can locate the nearest support group by contacting the Alzheimer's Association or sometimes through community organizations such as a senior center or your local hospital.
Therapists can be helpful in dealing with stress, anxiety, or depression in family caregivers, and can help you sort out conflicts about priorities of time or living arrangements. Religious organizations can also help through support groups, and some individuals might find solace in counseling from a member of the clergy.
Sometimes caregivers find it very difficult to arrange time to attend educational meetings or groups outside the home. In this case, you might want to try one of the telephone help lines, most of which are toll free. These offer trained peer counselors who are available to answer questions or just talk about problems you may be having. There are also a number of web sites, Internet chat groups, e-mail listserves, and bulletin boards that can provide support and information for caregivers. In addition, there are many good educational publications and videotapes. Some have been written or produced by experts for families and caregivers; others have been written by family members or even individuals with dementia. At the end of this guide, we provide information on where to find all these resources.
A FINAL WORD ABOUT AGITATION IN DEMENTIA
It is extremely painful to see a member of your family decline because of dementia, and especially difficult if agitation is also present. Remember that the behaviors are caused by a medical illness; that providing a calm, structured, safe, and caring environment can help; and that medications chosen carefully to address specific symptoms can alleviate distress and improve functioning. Research in treating agitation is only at the beginning. We have presented the best of current opinion, but much remains to be learned. The organizations listed below can help you find out about research studies of new treatments in which your loved one may be able to participate. Learn as much as you can about agitation and its treatment---your knowledge will make a difference in the quality of life for you and your affected family member.
Information on commonly prescribed Medications
Those who contributed
David A. Kahn,
M.D., Associate Clinical Professor of Psychiatry, Columbia University
Lisa P. Gwyther,
M.S.W., Assistant Clinical Professor, Department of Psychiatry and Behavioral
Sciences, Duke University Medical Center; Director, Alzheimer’s Family
Support Program, Duke Center for the Study of Aging and Human Development
Allen Frances, M.D., Professor and Chairman of Psychiatry, Duke University
Jonathan M. Silver, M.D., Clinical Professor of Psychiatry, New York University School of Medicine; Chief, Ambulatory Services, Department of Psychiatry, Lenox Hill Hospital
George S. Alexopoulos, M.D., Professor of Psychiatry, Cornell University Medical College; Director, Cornell Institute of Geriatric Psychiatry
Ruth Ross, M.A., Ross Editorial Services
The authors thank the following organizations for their valuable help in reviewing this guide
The American Federation for Aging Research
The American Association for Retired Persons
The National Citizens’ Coalition for Nursing Home Reform
Abbott Laboratories, Bristol-Myers Squibb, and Janssen Pharmaceutica provided unrestricted educational grants in support of this project
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