by Rich O'Boyle
One of the greatest impacts on quality of life for families and their loved ones with Alzheimer's Disease is the presence of agitation behavior in the middle stages of the disease process. More than half of patients with Alzheimer's Disease exhibit some type of "agitation" behavior over the course of a year, in addition to depression or psychosis. Experts suggest that the best way to manage agitation is through environmental and atmosphere changes rather than medications. Medications are a last resort.
Behavior management experts define "agitation behavior" as "inappropriate verbal or motor activity."
Non-aggressive Verbal Behavior: Incoherent babbling, screaming or repetitive questions is frustrating to the caregiver and family members, especially as a sign that your loved one is "losing it."
Non-aggressive Physical Behavior: Pacing, wandering, repetitive body motions, hoarding or shadowing represent ways for your loved one to communication boredom, fear, confusion, search for safety or inability to verbalize a request for help or a feeling of pain.
Aggressive Verbal Behavior: Cursing and abusive language can be shocking when your loved one was previously upright and proper.
Aggressive Physical Behavior: Clearly, physically aggressive behavior such as hitting, scratching or kicking can be dangerous or life-threatening to the caregiver and care recipient.
Some caregivers I have spoken to suggest that agitation behavior and aggression tend to occur more if the person was calmer when they were well: that the disease causes them to act opposite from their original behavior. Researchers have not backed that assertion up. However, researchers do say that men are twice as likely to exhibit aggressive behavior, especially in the middle to late stages of the disease, or if they have major depression. The degradation of different parts of the brain causes aberrant behavior. Other conditions, such as pain, can also lead to it.
Some caregivers cope by ignoring agitation behaviors. This is one of the worst things to do since it ultimately makes things worse for both the caregiver and the loved one. As you can imagine, the stress placed on the caregiver by these agitation behaviors often forces premature placement in a nursing facility, health problems for the caregiver and lessened quality of life for both.
Understanding Agitation Behavior
Experts say that all types of behavior are forms of communication. Your loved one is trying to tell you something even though the disease has robbed them of other ways (i.e., talking) of telling you. Perhaps your loved one is depressed or in pain and does not know how to express it in words. Some experts believe that agitation behavior is "the inability the deal with stress."
For the caregiver, the key is to identify whether the behavior is event-related (a visitor arrives, dinner is served), sudden (unexpected outburst) or escalates ("catastrophic" spiral of tension and outbursts). Organization by the caregiver will help a great deal in beginning to combat these behaviors:
Modify the environment to reduce known stressors (e.g., shadowy lighting, mirrors, loud noises);
Note patterns of behavior and subtle (and not so subtle) clues that tension and anxiety are increasing (i.e., pacing, incoherent vocalization);
Dysfunctional behavior often increases at the end of the day as stress builds and your loved one becomes tired.
Certain stressors can trigger agitation behaviors. While this list is not exclusive, it does provide the most common triggers and suggestions for minimizing their occurrence. As the caregiver, you have to use all of your senses to understand the environment and your loved one's behaviors. This is not easy stuff and this is not fool-proof. However, experimenting with these tools can go a very long way!
Fatigue: If confusion and agitation increase late in the day, suspect that fatigue may be a factor. Try to have your loved one rest or have quiet periods for up to two times a day at the same time. If they nap, do not get under the bed covers, rest in an easy chair or on top of the bed. Physical exercise is appropriate during the day, but prepare short activities with calm periods. Caffeine should be avoided. If your loved one wakes confused at night, increase (yes, increase) rest during the day.
Change of Environment, Routine or Caregiver: Sameness and routine help to minimize stress in the patient with Alzheimer's Disease. So if your loved one is in a facility it is best to have a routine and few environmental changes (e.g., no extensive holiday decorations). Some nursing homes discourage family visits for a period after admission or even for longer, this is never appropriate. Visit as often as you can! For a loved one living at home, it is best to schedule day care for at least three days a week so that your loved one will adapt it into his/her routine.
Affective Responses to Perception of Loss: (Huh?) This means that persons with Alzheimer's Disease still have memories and perceptions of activities that they used to enjoy. They miss being able to drive a car, cook or care for children. Whether at home or in a facility, safe activities should be substituted that satisfy your loved one. Depression should be treated.
Responses to Overwhelming or Misleading Stimuli: Excessive, noise, commotion or people can trigger agitation behavior. Researchers have found that more than 23 people in a group (e.g., dining room or holiday party) can cause undue stress in a person with Alzheimer's Disease. The television, mirror image, dolls or figurines may represent extra people in the environment. Before medicating with anti-psychotic drugs, the family member and health care team should consider these environmental factors.
Excessive Demand: Caregivers and families must accept that your loved one has lost (and continues to lose) mental functions. No amount of quizzing, reality orientation, "brain exercises," retraining or pushing them to try harder will improve their mental capabilities. Indeed, it can cause stress and a sense of futility. The best a caregiver can do is provide positive support and understanding, encourage independence and assist your loved one when they are unable to perform a task.
Delirium: Illnesses such as infections, pain, constipation, trauma or drug interactions may cause dementia-like symptoms. Preventive measures such as good oral care, nutrition, simplified medication regimens and adequate fluid intake play an important role in a loved one's well-being.
Some Specific Problem Behaviors
After minimizing environmental and behavioral stressors, you may still find that your loved one exhibits agitation behaviors. Some of these may be relatively benign. But others are disturbing to the caregiver, family members and visitors. The sad consolation is that many of these behaviors gradually disappear as the disease progresses into later stages. Prescription drug therapy may be appropriate for the following behaviors after other factors have been addressed:
Wandering: Caregivers should understand that your loved one wanders for a reason. The exact reason may be hard to determine. Nevertheless, locking him/her in a room or restraining in a chair is inappropriate. Implement activities and adjust the environment to relieve agitation if possible. Minimize all safety risks.
Screaming: Consider medical causes for screaming that your loved one cannot verbalize such as pain, depression or hearing loss.
Gathering/Shopping: A loved one who rearranges objects around the home, hoards or appropriates other's possessions can be a disruptive nuisance. Provide your loved one with a "safe" place where s/he can store items (and you can retrieve them). You may provide your loved one with a canvas "shopping bag."
Pacing: A loved one who paces incessantly can burn off too many calories. High-calorie finger foods may help the problem. You can try to reduce pacing by providing inviting places for your loved one to sit and relax. Secondly, too much pacing can produce aches and pains. Finally, pacing may inadvertently turn into wandering, with your loved one getting lost. Consider buying a safety alert bracelet, joining the Safe Return Program at https://www.alz.org, or visiting a jogging track.
Sexual Aggression: Try to determine whether the sexual gesture is indeed sexual in nature and not an expression of the need to go to the bathroom. Speak with qualified professionals such as psychiatrists, social workers and behavior management therapists to determine treatment options. Medications may not be useful in treating sexual symptoms. You may want to have a professional examine him/her for signs of an atypical dementia such as Lewy Body Dementia or Pick's Disease. These may require different types of psychiatric and behavioral interventions.
Hallucinations/Illusions: After you have removed confusing stimuli (e.g., shadowy lighting, televisions, dolls), you may want to have a professional examine him/her for signs of an atypical dementia such as Lewy Body Dementia or Pick's Disease. These may require different types of psychiatric and behavioral interventions.
What Can Be Done
A simplified approach to managing agitation behaviors can be summed up as: "Modify the environment, modify the behavior and medicate as a last resort." Recent research is starting to show that some relatively basic interventions can be used to ease agitation behaviors. While most of the research was conducted in residential facilities such as nursing homes, family caregivers can duplicate some of the effects.
Music Therapy: Some studies show that playing calming music or your loved one's favorite type of music can lead to a decrease in agitation. When used during meals, soothing music can increase food consumption; when used during bathing, relaxing or favorite music can make it easier to give a bath. Experiment with relaxing, soothing, classical, religious or period (e.g., 1920's or Big Band) music.
Exercise and Movement: Light exercise, such as chair exercises as directed by a physical therapist or activities coordinator each day can help to maintain function of limbs and decrease problem behaviors. Walking for up to 1 hours after dinner several times each week may help reduce aggression. When small groups of 3-4 people go on walks, it may lead to beneficial social interactions such as singing and talking. Be sure to consult with your loved one's health professional to make sure there are no conditions that preclude exercise and walking. Don't overdo it or walk too far from home. Build up gradually and maintain it. Exercise is good for YOU (the caregiver), too.
Activities: Safe activities are a good way for your loved one to get back in touch with their earlier life and find meaning throughout the disease process. Look for activities that are like those that they enjoyed in the past. You may have to think abstractly, for example, someone who raised a large family and cared for children may enjoy caring for a garden. Look for activities that reflect your loved one's previous career. Consider setting aside a "work room" with safe tools for a someone who enjoyed tinkering or was a carpenter. Never assume that your loved one can not get pleasure out of activities, even if they are simple activities in your eyes.
Socialization: Human interaction is essential for people with Alzheimer's Disease. As we mentioned, large groups and most strangers are definitely out. But you can introduce a high school student or volunteer as a "new friend" or companion to spend time with your loved one. They can reminisce, converse, walk or perform activities together. There are videos and cassettes for later stage patients. These products mimic a conversation or a sing-along.
Rich O'Boyle is the Founder and Community Coordinator of ElderCare Online at http://www.ec-online.net. He has worked variously as a senior health care writer and management consultant. He has volunteered as a Long-Term Care Ombudsman in New York and is a member of the National Association of Professional Geriatric Care Managers and the American Society on Aging.