By Rich O'Boyle, Editor
More About Rich...
One of the greatest impacts on quality of life for families and
their loved ones with Alzheimers Disease is the presence of agitation behavior in
the middle stages of the disease process. More than half of patients with Alzheimers
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
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 ones 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
- Change of Environment, Routine or Caregiver: Sameness and
routine help to minimize stress in the patient with Alzheimers 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 Alzheimers 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 Alzheimers 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
- 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 ones 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.
ElderCare Online publishes several articles on Wandering in the Home Care & Independent Living Channel.
- 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 others 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
- 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 (http://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 Picks 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
Picks Disease. These may require different types of psychiatric and behavioral
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
- Music Therapy: Some studies show that playing calming music
or your loved ones 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., 1920s 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 1½ 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 ones health professional to make sure
there are no conditions that preclude exercise and walking. Dont overdo it or walk
too far from home. Build up gradually and maintain it. Exercise is good for YOU (the
- 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
ones 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 Alzheimers 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.
Related Articles:Locks and Wandering (Part 1 of 3)
Alarms: Precautions for
Wandering (Part 2 of 3)
Diversions: Precautions for Wandering (Part 3 of
Validation Therapy to Manage Difficult Behaviors
Things to Do With a Person With Alzheimer's Disease
& Crafts for People With Dementia
Reading List (Behavior Management):
Reading List (Activities):
Source: This article was adapted from presentations
made to the World Alzheimers Congress on July 14, 2000 by Geri Hall, PhD, University
of Iowa Center on Aging, Iowa City, IA and Cornelia Beck, RN, PhD, University of Arkansas
School for Medical Sciences, Little Rock, AR.