Treatment of Dementia and Agitation: A Guide for Families and Caregivers

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Treatment of Dementia and Its Behavioral Disturbances -- A Postgraduate Medicine Special Report

If someone you care about has been diagnosed with demen-
tia, you may feel that you are the only person facing the diffi-
culties of this illness. But you are not alone. As people in our
society live longer, many of us have to face the decline in mem-
ory and thinking of someone we love. 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 and other behavioral
symptoms, making it much harder to care for them. Even in
the best situations, 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. Research con-
cerning Alzheimer’s disease has increased at a tremendous rate,
with over 29,000 scientific papers published in the past 15
years according to the Alzheimer’s Association. Support groups
and national organizations offer practical advice and support
that can help you solve problems and better care for your loved
one. You can learn about ways to structure daily routines and
activities to help a person with dementia feel calmer and more
secure and reduce his or her agitation. There are also medicines
that can help. In this guide, we discuss treatments that may
slow the progress of memory loss and cognitive impairment
and strategies for reducing agitation. The treatments discussed
here are based on recent recommendations of a panel of physi-
cian experts on the treatment of dementia.


WHAT IS DEMENTIA?


The term dementia refers to a severe loss of thinking abili-
ties, especially memory. In addition to memory loss, a person
with dementia may have trouble carrying out everyday tasks.
The person may get lost in familiar surroundings or show poor
judgment. A person with dementia may also show changes in
personality and lose interest in activities he or she used to
enjoy. Dementia happens most often in later years and is espe-
cially common in people 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 as we age. But these memory changes often
remain mild and do not interfere with our functioning and are
thus not part of dementia. Unlike memory changes that are
part of the aging process, memory loss in dementia becomes
increasingly severe over several years. If you have questions, a
doctor can help you tell the difference.

Dementia is caused by a disease that damages tissues in the
brain, causing disturbed brain functioning. The most common
kinds of dementia are Alzheimer’s disease and vascular dementia.
Some people have a combined type of dementia involving both
Alzheimer’s disease and vascular dementia. Two other kinds of
dementia are dementia with Lewy bodies and frontotemporal
dementia. Other less common causes of dementia include
Parkinson’s disease, alcoholism, and head injury.

Alzheimer’s disease causes the gradual death of brain tissue
due to biochemical problems inside individual brain cells.
Scientists have found 2 types of abnormal proteins, amyloid
plaques and tangles, in the brains of people with Alzheimer’s dis-
ease. These proteins appear to be associated with the disease in
some way. Researchers are also working to develop better tests to
tell if someone has Alzheimer’s disease, since it can be difficult to
make a clear diagnosis in the early stages of the illness.

Vascular dementia is caused by changes in the brain’s blood
vessels. As a result, oxygen does not reach a part of the brain
supplied by the blood vessel, and a section of the brain is dam-
aged or dies. This causes the person to suddenly lose the func-
tions performed by that part of the brain. This is what happens
when a person has a stroke. Depending on the part of the brain
that is affected, a stroke can cause a person to lose thinking
abilities, muscle control, or sensation, or a combination of
these. Vascular dementia can be caused by a single large stroke
or the combined effect of many small strokes and other
changes in blood vessels.

When an older person’s memory declines, it is important to
obtain a complete medical examination. The doctor can often
find out if the problem has a temporary cause that can be eas-
ily reversed (such as an infection, a side effect of medicine, or
a hormone problem), or if Alzheimer’s disease or vascular
dementia is the cause. To diagnose dementia, doctors do a
complete physical examination, including special brain and
memory tests. They sometimes also order specialized pictures
of the brain taken by computed tomography (CT) or magnetic
resonance imaging (MRI).


ARE THERE WAYS TO PREVENT DEMENTIA OR SLOW
ITS PROGRESSION?


Since we do not yet know the exact causes of Alzheimer’s
disease, researchers have not been able to develop effective
treatments to prevent it. We know more about preventing vas-
cular dementia. The following strategies may lower the risk of
dementia or slow down memory loss:

- Control of high blood pressure and diabetes is important
in possibly preventing dementia.

- Aspirin helps prevent some types of strokes and is recom-
mended for people at risk for vascular dementia, such as
those who have high blood pressure or atrial fibrillation.

- Lipid-lowering medications (statins) are recommended for
people with high cholesterol. They may reduce the risk of
vascular dementia. Recent research suggests that statins may
be associated with some short-term changes in cognition or
memory but there is no evidence that these agents con-
tribute to the development of dementia.

- Cholinesterase inhibitors may slow progression to demen-
tia in a person who has early signs of memory loss and is at
risk for Alzheimer’s disease because of advanced age or a
family history of Alzheimer’s.

- Antioxidants (vitamins C and E) may be helpful in pre-
venting progression to dementia but more research is
needed. Recent findings suggest that treatment with high
doses of vitamin E may be associated with increased mortal-
ity rates.

Ask your doctor if you have questions or concerns about any
treatments that are prescribed.


WHAT TREATMENTS ARE AVAILABLE FOR
DEMENTIA?


Although there are no treatments that can definitely stop
loss of brain cells, medicines have been developed that can help
slow the progress of cell loss and cognitive impairment. Two
kinds of medications have been approved by the U.S. Food
and Drug Administration (FDA) to treat cognitive symptoms
of dementia.


Cholinesterase inhibitors

Cholinesterase inhibitors are drugs that prevent the break-
down of acetylcholine, a brain chemical involved in memory
and other functions related to thinking. By increasing the lev-
els of acetylcholine, these drugs may help maintain or improve
cognitive abilities in some people with dementia. The doctor
may recommend one of the following cholinesterase
inhibitors:
- Donepezil (Aricept)
- Galantamine (Reminyl)
- Rivastigmine (Exelon)
- Tacrine, the first cholinesterase inhibitor, which was
approved in 1993, is rarely used now because it can cause liver
damage.


NMDA antagonists

In 2003, the FDA approved memantine (Namenda), the
first N-methyl-D aspartate (NMDA) receptor antagonist, for
use in moderate-to-severe dementia. It is believed that meman-
tine modifies the functioning of the NMDA brain receptor in
a way that reduces the negative effect of too much exposure to
the brain chemical glutamate. High levels of glutamate can
cause the death of nerve cells and worsen memory loss.
When are these treatments used?

Cholinesterase inhibitors are often prescribed during the
early phases of Alzheimer’s disease and other types of demen-
tia. The doctor may suggest using a combination of a
cholinesterase inhibitor and memantine if the person does not
respond to a cholinesterase inhibitor by itself. Memantine is
approved by the FDA for more severe cases of dementia, and
the doctor may combine memantine and a cholinesterase
inhibitor in severe dementia. Cholinesterase inhibitors and
memantine can reduce memory loss, but the progress of the
dementia itself may make it hard for caregivers to notice this
beneficial effect. Generally, physicians consider treatment with
these medications successful if memory remains unchanged for
6 months.


WHAT IS AGITATION?


Many people with dementia experience irritability, restless-
ness and explosive behavior best summed up by the term agi-
tation. A person with dementia is more agitated because the
brain has physically changed and no longer functions in a
healthy manner. The symptoms of agitation 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 symptoms you may encounter:

- Irritability, frustration, excessive anger
- “Blow ups” out of proportion to the cause
- Constant demands for attention and reassurance
- Repeated questions or telephone calls
- Stubborn refusal to do things or go places followed by
explosive behavior
- Constant pacing, searching, rummaging
- Yelling, screaming, cursing, threats
- Hitting, biting, kicking


WHAT CAUSES AGITATION IN DEMENTIA?


In this guide, we focus on 4 of the most common problems
that can cause agitation: physical and medical problems, envi-
ronmental stresses, sleep problems, and psychiatric syndromes.


Physical and medical problems

If a person with dementia has become agitated for the first
time or shows a change from usual behavior, the first thing to
look for is a medical or physical problem. Sudden illnesses can
weaken the brain and cause agitation to worsen. Your doctor
might use the term delirium to describe an episode of agitation
and confusion that begins suddenly because of a medical illness
or too much medication. Delirium improves when the medical
problem gets better or the medications are stopped. The most
common medical problems that can cause agitation or delir-
ium are bladder infections, bad colds, bronchitis or pneumo-
nia, and dehydration or poor nutrition (especially in people
who forget to eat or can’t feed themselves). It is also very
important to be sure that the person has not recently had a
new stroke or been hurt in a fall. Flare-ups of chronic diseases
such as diabetes or heart, liver, or kidney disease can also cause
agitation or delirium, especially if the person cannot take med-
ications reliably or follow a special diet.

A bad reaction to medication can cause delirium, with the
person developing sudden confusion and agitation. Older peo-
ple are often taking many different medications that can inter-
act with each other. It is important to tell the doctor about any
medication the person is taking to find out if side effects of a
new medicine, an interaction between medicines, or taking the
wrong dose might have caused a bad reaction.

Physical problems can cause pain, discomfort, worry, or lack
of sleep that can make the person upset and tired and lead to
agitation. Such problems include arthritis, sitting all day in an
uncomfortable position, constipation, and problems seeing or
hearing.


Environmental stresses

People with dementia are more sensitive to their environ-
ment than people without dementia. The ideal environment
for a person with dementia is one that provides clear, calm, and
comforting structure. It is helpful to maintain a routine, since
changes in schedule or rushing can cause disappointment, frus-
tration, or fear. A physically comfortable environment is
important. Being in an area that is noisy, poorly lighted, or too
hot or cold can cause agitation. People with dementia can also
become agitated if they are left alone for too long or if there are
too many people around. A person with dementia may find it
very upsetting to have to undergo a medical or dental proce-
dure and especially to be hospitalized. These situations can
cause a person who was calm at home to become very agitated
and confused.


Sleep problems

People with dementia often have trouble falling asleep or
staying asleep. Although the cause is often unclear, it is some-
times possible to pinpoint a reason that can be corrected—
such as too much activity just before bedtime, using caffeine or
alcohol, or drinking fluids before bedtime and then having to
urinate. Depression or physical pain can also cause insomnia.
Keep in mind that people with dementia often sleep during the
day and no longer need to sleep as much during the night.

“Sundowning” is another kind of sleep problem. Sleep pat-
terns 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 leading to a
problem called “sundowning,” in which confusion, disorienta-
tion, and agitation appear or grow worse during the evening
and night hours.


Psychiatric syndromes

People with dementia may become agitated because of psy-
chiatric syndromes. These include psychosis, aggression or
anger, depression, and anxiety.

- Psychosis means being out of touch with reality. There are
two kinds of psychotic symptoms: delusions (incorrect
beliefs) and hallucinations (hearing, seeing, or smelling
things or feeling sensations on the skin that are not there).
People with delusions cannot be convinced that their delu-
sional beliefs are incorrect. People with Alzheimer’s disease
may have delusions that people have stolen their money or
possessions, that a spouse is unfaithful, that unwelcome
guests are living in the house, or that a relative is an imposter
and not really the person he or she claims to be. The person
may have visual hallucinations such as seeing nonexistent
visitors or burglars. This can cause the person to fearfully
report events that have not actually occurred.

- Anger and aggression. Dementia causes individuals to lose
their normal ability to control angry impulses, a problem
called disinhibition. A person with dementia who becomes
aggressive and disinhibited may threaten another person ver-
bally or physically, or destroy objects. Aggression may hap-
pen because the person misunderstands or misinterprets the
actions of others, and then lashes out because he or she feels
ignored, afraid, or mistreated. The person may also become
angry because he or she feels frustrated at being unable to
complete tasks that were once easy, such as fixing something
that is broken, using the stove, or going to the bathroom.
Sometimes there is no obvious cause for the person’s frustra-
tion. Anger and aggression can lead to verbal accusations and
insults, aimless screaming, refusal to cooperate with requests
to eat or bathe, and even physical assaults. Aggression can
also cause people to hurt themselves, for example by banging
their head against the wall or bed or biting themselves. When
a person with dementia becomes aggressive, it is important
to evaluate the environment and make changes to improve
safety. Aggression can usually be helped by providing reas-
surance and a comfortable soothing environment. It is more
helpful to distract rather than confront an agitated person
with dementia. Medication may also be needed.

- Depression. Dementia can cause brain changes that lead to
depression. Even though the depression is related to the
dementia, it can be treated and should not be ignored.
When depression is successfully treated, people with demen-
tia are more able to enjoy time with their families and other
pleasurable activities. If your loved one looks sad, is tearful,
appears unable to enjoy anything, frequently expresses feel-
ings of discouragement, failure, or being a burden, or says he
or she wants to die or commit suicide, tell the doctor so that
he or she can evaluate the person for depression. Depression
often causes physical symptoms such as loss of appetite and
weight, trouble sleeping, or complaints of physical pain. If
no other medical cause is found for these physical symp-
toms, depression should be considered, even if the person
denies feeling sad but just seems withdrawn or to have lost
interest in things. Depression can also make people agitated.
This might appear as extreme tearfulness, hand-wringing,
an excessive need for reassurance, or other signs of extreme
unhappiness. Depression can also cause the person to have
delusions, most often guilty feelings about having done ter-
rible things in the past.

- Anxiety means being very worried. The person may become
nervous, fidgety, shaky, or frightened because of exaggerated
fears that often have little basis in reality. During the early
stages of the illness, the diagnosis of dementia itself can
cause anxiety because of concerns about the future and fear
of the disease. The person may also feel anxious and worried
about making mistakes, forgetting things, or having trouble
joining a conversation. An anxious person may not always
be able to put the feelings into words, but instead may
appear tense or have physical symptoms such as a racing
heart, nausea, or butterflies in the stomach. People with
dementia may become especially anxious when they are sep-
arated from caregivers, when their schedules are changed, or
when they are rushed or tired.


TREATMENT OF AGITATION


How soon should agitation be treated?

Agitation does not go away by itself. Research shows that it
usually continues for 2 or more years, especially if it is associ-
ated with aggressive behavior. If treatment is begun early, there
is a better chance to find the most effective and safest treat-
ment before agitation causes safety or health risks for the per-
son or the family.

How is agitation treated?

There are a number of ways that you and the clinicians
working with you can help an agitated person:
- Providing the right environment
- Supervising activities
- Learning to communicate with a person who has dementia
- Getting support and improving coping skills
- Medication


PROVIDING THE RIGHT ENVIRONMENT


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 people with dementia become particularly agitated at
certain times of the day. Would it help to change the per-
son’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 per-
son remembered to use the bathroom? Is he or she consti-
pated? 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 peo-
ple with dementia to become scared and disoriented.
Getting dressed can be frustrating for someone with demen-
tia. Try to simplify this task, for example, by using Velcro
fasteners and not insisting on matching outfits.

- Is the person feeling stressed, hungry, tired, scared, cold, or
hot? Does he or she need to use the bathroom? Fresh air or
air conditioning can reduce agitation. It is also important
not to rush individuals with dementia.

- Is there a chance for regular exercise? Walks and simple exer-
cises are good ideas. If a person wants to pace and isn’t dis-
rupting anyone, that’s OK, too.

- Is the room well lighted? Good lighting can help reduce dis-
orientation and confusion. Provide night-lights.

- 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 necessary steps to
ensure the safety of the person and his or her caregivers (e.g.,
lock up knives and guns, take stove knobs off 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). It is a good idea
to register the person with the Alzheimer’s Association SAFE
RETURN program (p. 108) in case he or she wanders off
and gets lost.


SUPERVISING ACTIVITIES


People with dementia often need help or supervision in deal-
ing with activities of daily living, such as getting dressed and
bathing. Giving the person something useful or interesting to
do, especially when directions and structure are offered, can
help prevent anxiety and agitation. Here are some suggestions:

- Structure and routine. Try to follow regular predictable rou-
tines 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 agitation
is to give the person something else to do as a substitute.
Someone who is restless and fidgety can be asked to sweep,
dust, rake, fold clothes, or take a walk with the caregiver. A
person who is rummaging can be given a group 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 may want to do something or
behave in a way that at first troubles you, or may refuse to do
something you planned, like taking a bath. Before trying to
interfere with a particular behavior, ask yourself if it is impor-
tant to do so. Even if the behavior is bizarre, it may not be a
problem, especially in the privacy of your own home.

- Soothe. Simple, repetitive activities, such as massage, hair-
brushing, or a manicure, may help reduce agitation.

- Compensate. It is important to let people with dementia do
things they are able to do, so that they will feel empowered.
At the same time, helping the person with tasks that are too
demanding for them is comforting and prevents frustration.

- Reassure. Let the person know 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:
Stress the importance of having regular check-ups rather than
talking about a specific test. Try to figure out if your loved
one does better with advance notice in order to prepare or if
he or she responds better without being told ahead of time.
Present the trip in a matter-of-fact way as part of the day’s
plans. Allow plenty of time to avoid having to rush. If possi-
ble, 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.”



LEARNING TO COMMUNICATE WITH A PERSON
WHO HAS DEMENTIA


People with dementia often find it hard to remember the
meaning of words or to think of the words they want to say.
During the late phases of the illness, people with dementia
may communicate mainly by gestures and expressions. The
following suggestions may help you communicate with a per-
son who has dementia:

- It is understandable that you may sometimes feel angry; but
showing your anger can make the person’s agitation worse.

- If you are about to lose your temper, try “counting to ten,”
remembering that the person has a disease and is not delib-
erately 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 con-
vinced 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 supplies in advance
for tasks such as bathing and dressing; have a special signal
for needing to go to the bathroom. Try to break up compli-
cated tasks into simple segments; physically start doing what
you want to happen.

- If a subject of conversation makes a person agitated or frus-
trated, it is better to drop the issue rather than keep trying
to correct a specific misunderstanding. He or she will prob-
ably forget the issue and be able to relax in a short while.


GETTING SUPPORT AND IMPROVING COPING SKILLS


Some of your loved one’s behaviors may be difficult,
exhausting, and even frightening for you. When you feel frus-
trated, try to remember that these behaviors are part of the dis-
ease that is affecting 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 behav-
ior, not the person they once knew.

Social support is important for caregivers, whose own men-
tal health can be affected by the stress and sadness of caring for
someone with dementia. Help is available from support orga-
nizations, newsletters, books, and 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” can often share 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 a community organization (e.g., senior center) or a
local hospital.

Therapists can help caregivers deal with stress, anxiety, or
depression and sort out conflicts about priorities in time or liv-
ing arrangements. Religious organizations can also help
through support groups, and some individuals may find solace
in counseling from a member of the clergy.

Caregivers sometimes find it hard to arrange time to attend
meetings or groups outside the home. In this case, you might
want to try calling one of the telephone help lines, most of
which are toll-free, where clinicians and counselors as well as
trained peer counselors are available to answer questions or just
talk about problems you may be having. There are also a num-
ber 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 pub-
lications and videotapes. Some have been written or produced
by experts for families and caregivers; others have been written
by family members or even people with dementia. Refer to the
end of this guide for information on available resources.


MEDICATIONS FOR AGITATION


When are medications used to treat agitation?

Sometimes it is impossible to help a person become calm,
despite your best efforts at providing warmth and structure.
Medication for agitation can help you avoid caregiver “burn
out” and make it easier for the person to respond to your
efforts. The more severe the agitation, the more important it is
to consider medication. Medication does not “cure” dementia
or agitation but can lessen the frequency and severity of agi-
tated behavior.

The authors of this article conducted a survey study of
experts on the treatment of dementia to find out which med-
ications they consider most helpful in reducing agitation in
people with dementia. The information in the following sec-
tions is based on their recommendations and recent research
findings. It is important to remember that some trial-and-error
is often involved in finding the right medication, dose, and
schedule—every treatment plan is “custom made.” Although
the doctor will of course be prescribing the medication, it is a
good idea for you to learn as much as you can about the vari-
ous treatments, their likely benefits, and possible side effects.
Ideally, you can become the doctor’s partner, since you see the
person more than anyone else and may be in the best position
to know how a medication affects him or her. Families some-
times worry that medicines for agitation will just sedate a per-
son or make confusion worse, or that they are shirking
responsibility by relying on medication. However, careful use of
medication can lessen agitation without unwanted sedation and
help you better care for and communicate with your loved one.


How do doctors choose specific medications?

The doctor will consider a number of factors in recom-
mending a medication for your loved one:

- Is the goal short-term or long-term? The
goal of short-term treatment is to calm the
person down quickly during a crisis. Often
this means making the person somewhat
drowsy for a few hours. Since agitation is
often a long-term problem, the goal is
often to find a medicine that can be used
for weeks or months without causing
unwanted sedation or harmful side effects.
Since it can take several weeks for these
longer-term treatments to start working, it
is important to try to be patient as doses
are slowly and carefully adjusted.

- What other medical problems does the
person have and what other medicines is
he or she already taking? Medical illnesses
can make a person more sensitive to med-
ication side effects. Older people often take
many medicines, so that it is very impor-
tant to avoid adding a drug that will inter-
act with what the person is already taking.
Certain illnesses can also make it harder to
use some medications. For example, people
with lung disease should avoid medicines
that might slow down breathing. People
who are unsteady on their feet or have a
history of falls should avoid medicines that
might affect coordination.

- What types of agitation does the person
have? In choosing a medication, the doctor
will consider the kinds of agitation symp-
toms the person has. For example, some
medicines are better for agitation that is due to psychosis,
whereas others may be more helpful if the agitation is caused
by anxiety or depression.


What medications are used for different types of
agitation?

Many kinds of medication can be used to treat agitation,
depending on the person’s main symptoms. The table on this
page shows medicines that were recommended for different
problems in a recent survey study of experts on dementia. Each
type of medicine is discussed in detail in the sections that fol-
low. In prescribing medications for your loved one, the doctor
may have to try several before finding one that will help.
Doctors usually try to use as few medications as possible to
treat older patients with dementia in order to avoid interac-
tions among medications.

Antipsychotics

Antipsychotic medications (sometimes called neuroleptics)
have been the mainstay for treating agitation for many years.
Two kinds are available:

- Conventional antipsychotics, such as haloperidol (Haldol),
that have been available for the past 40 years

- Atypical antipsychotics, such as aripiprazole (Abilify), olan-
zapine (Zyprexa), quetiapine (Seroquel), risperidone
(Risperdal), and ziprasidone (Geodon)

Antipsychotics help reduce delusions, hallucinations,
aggression, and sundowning. They work quickly and can make
the person drowsy, so that they are useful in emergencies.
Haloperidol, olanzapine, and ziprasidone can be given in a
shot (injection) if the need is urgent.

The older conventional antipsychotics (such as haloperidol)
can cause some unpleasant side effects. These include a kind of
muscle stiffness called dystonia (rare in the elderly), slowed
down movements and tremor that resemble Parkinson’s dis-
ease, a restless feeling called akathesia that makes a person want
to pace around, and, sometimes after months or years of use,
involuntary movements of the mouth or hands called tardive
dyskinesia.

Because of these side effects of the older medicines, the
newer atypical antipsychotics are now the first choice for treat-
ing agitation in people with dementia. The newer antipsy-
chotics are less likely to cause movement side effects than the
older drugs, especially with long-term treatment.

Antidepressants

The selective serotonin reuptake inhibitors (SSRIs) are a
group of antidepressants that are most often recommended for
older people with dementia. These include citalopram
(Celexa), escitalopram (Lexapro), fluoxetine (Prozac), fluvox-
amine (Luvox), paroxetine (Paxil), and sertraline (Zoloft).
Other antidepressants the doctor may prescribe include bupro-
pion (Wellbutrin), duloxetine (Cymbalta), mirtazapine
(Remeron), venlafaxine (Effexor), or a tricyclic antidepressant
(e.g., desipramine or nortriptyline). The doctor may need to
try more than 1 antidepressant before finding the best one for
an individual. It is important to be patient, since it often takes
several weeks to see if an antidepressant is helping. During that
time, you can sometimes help keep up a person’s spirits with
activities, a day program, or a support group.

People with depression sometimes have delusions; they may
fear that their body organs are not working, that they have
been abandoned by everyone, or that they have no money
(when in fact they do). Delusional depression can be life-
threatening: It may increase the risk for suicide or cause the
person to refuse to eat and drink leading to severe weight loss
and dehydration. It can also cause agitation and trouble sleep-
ing. If the person has severe depression and delusions, the doc-
tor may either give an antidepressant and an antipsychotic
medication together, or prescribe electroconvulsive therapy
(ECT, sometimes called shock treatment). Most patients who
receive ECT have not responded to medication. Although
there are many negative myths about ECT, research has shown
that it can be used safely in older patients.

Antidepressants can help treat conditions besides depres-
sion. Some antidepressants, especially the SSRIs, can help with
anxiety. Tricyclic antidepressants, SSRIs, venlafaxine, duloxe-
tine, and trazodone are also used to give relief in arthritis pain
and certain types of nerve pain. Trazodone is sold as an anti-
depressant but is usually too sedating for this purpose; it is
often used as a sleep aid (see below).

Divalproex (Depakote)

Divalproex was developed as a treatment for epilepsy and is
also used to stabilize mood in bipolar disorder (manic-depres-
sive illness). Divalproex can help people with dementia who
are showing aggression or anger. It is often combined with an
antipsychotic medicine. Side effects of divalproex are nausea
and sedation, which can be reduced by starting with low doses,
making gradual adjustments, and monitoring the level of med-
ication in the bloodstream.

Trazodone (Desyrel)

Trazodone is a relatively safe, non-habit-forming medication
that works as an antidepressant at high doses. However, doc-
tors often use low doses of trazodone to treat insomnia. It can
also be used as a short-term treatment for anxiety or when a
mild sedative is needed. To help with sleep it is usually given
about 1 hour before bedtime. The main side effect is drowsi-
ness if the dose is too high. Other side effects include dizziness
when standing up and, very rarely, painful erections in men.

Benzodiazepines and other sedatives

Benzodiazepines and other sedatives can relieve anxiety and
make people drowsy. These sedatives are mainly used when
someone needs to be calmed down quickly. Benzodiazepines
can be habit-forming if used steadily for more than a few
weeks; even single doses can cause unsteady gait and interfere
with memory. Because of these problems, doctors usually avoid
using them for long-term treatment of insomnia, anxiety, or
agitation unless other choices have failed.

Among the benzodiazepines, lorazepam (Ativan) and
oxazepam (Serax) are preferred in older patients because they
are cleared from the body almost as quickly in older patients as
in younger patients. Zolpidem (Ambien) is a non-benzodi-
azepine sedative. Its effects last 6 to 8 hours and it is usually
given to help with sleep. Other benzodiazepines, such as flu-
razepam (Dalmane) and clonazepam (Klonopin) stay in the
body longer and are usually avoided because they can cause
daytime sedation or falls.


A FINAL WORD ABOUT AGITATION IN DEMENTIA


It is painful to see a family member change and decline
because of dementia, and especially difficult if agitation is also
present. It is helpful to remember the following points in caring
for an agitated family member with dementia:

- The agitation is caused by a medical illness; it is not the fault
of the person with dementia.

- It is important to provide a calm, structured, safe, and caring
environment.

- Carefully chosen medications can relieve distress and help
the person function.

Research in treating agitation is only in the very early stages.
We have presented the best of current opinion, but much
remains to be learned. The organizations listed on the next
page can help you find information about research studies of
new treatments in which your loved one may be able to par-
ticipate. Learn as much as you can about dementia and the agi-
tation that can occur with dementia—your knowledge will
make a difference in the quality of life for you and your family
member.


INFORMATION, ADVOCACY, AND RESEARCH


Alzheimer’s Association

World leader in Alzheimer’s research and support. Largest and
oldest voluntary health organization dedicated to Alzheimer’s
prevention, treatment, care, and support. Provides reliable infor-
mation and care consultation, creates supportive services for
families, increases funding for dementia research, and influences
public policy changes. Provides care and support through more
than 300 points of service. Extensive materials are available
through the Green-Field Library: 312-335-9602. Maintains the
Safe Return Program (see below).

225 N. Michigan Ave., Floor 17
Chicago, IL 60601
800-272-3900
www.alz.org


Alzheimer’s Association Safe Return

Nationwide program to provide assistance when a person with
dementia wanders and becomes lost. Assistance is available 24
hours a day, 7 days a week. One call activates community support
network. Safe Return faxes enrolled person’s information and
photo to local law enforcement. When the person is found, a citi-
zen or law official calls the 800 number on the identification prod-
ucts and Safe Return notifies listed contacts. One time enrollment
fee of $40 (scholarships are available in some areas). Enroll online,
by phone using a credit card (888-572-8566) or by mail (form
available in several languages online or by calling 888-572-8566).

Alzheimer’s Association Safe Return
P.O. Box A3687
Chicago, IL 60690-3687


Alzheimer’s Disease Education and Referral Center
(ADEAR)

Service of the National Institute on Aging (NIA), the primary
U.S. Government agency for research on Alzheimer’s disease.
ADEAR provides up-to-date and comprehensive information on
Alzheimer’s disease for health professionals, people with
Alzheimer’s disease and their families, and the public. Makes
available answers to questions, free publications in English and
Spanish concerning Alzheimer’s disease, and referrals to support-
ive services and research centers.

ADEAR Center
PO Box 8250
Silver Spring, MD 20907-8250
800-438-4380
www.alzheimers.org


American Federation for Aging Research

Leading national organization supporting medical research on
aging and age-related diseases. Publishes Lifelong, a monthly
newsletter for patients and families. Maintains a consumer Web
site with useful information on aging at www.infoaging.org.

American Federation for Aging Research (AFAR)
70 West 40th Street, 11th Floor
New York, NY 10018
888-582-2327, 212-703-9977
www.afar.org


National Citizens’ Coalition for Nursing Home Reform

Offers information on getting the best care in nursing homes,
about regulations that protect nursing home residents, and other
useful information for caregivers.

1424 16th Street NW, Suite 202
Washington, DC 20036
202-332-2275
www.nursinghomeaction.org


Other Useful Resources

- Children of Aging Parents (www.caps4caregivers.org) 800-
227-7294

- National Association for Continence (www.nafc.org) 843-
377-0900, 800-BLADDER (800-252-3337)

- American Association of Retired Persons (AARP)
(www.aarp.org) 888-687-2277

- National Insurance Consumer Helpline 800-942-4242

- National Hospice and Palliative Care Organization
(www.nhpco.org) 703-837-1500, 800-646-6460

- Eldercare Locator (www.eldercare.gov) 800-677-1116

- Medicare Hotline (www.medicare.gov/CallCenter.asp) 800-
MEDICAR (800-633-4227)

- Social Security Information (www.ssa.gov) 800-772-1213

- Agency for Health Care Policy and Research Publications
Clearing House : Early Alzheimer’s Disease: Patient and Family
Guide can be downloaded at www.ahcpr.gov/clinic/alzcons.htm
Alzheimer’s Caregiver Support Online (www.alzonline.net)
866-260-2466


FOR MORE INFORMATION


Alzheimer’s disease: unraveling the mystery, NIA, 2002. Available
on www.alzheimers.org or by calling 800-438-4380.
Bell V, Troxel D. A dignified life: the best friends approach to
Alzheimer’s care: a guide for family caregivers. Health Commu-
nication Press, 2002
Bryan J. Love is ageless: stories about Alzheimer’s disease, 2nd ed.
SCB Distributors, 2002
Davis R. My journey into Alzheimer’s disease. Tyndale, 1989
Gruetzner H. Alzheimer’s: a caregiver’s guide and sourcebook, 3rd
ed. Wiley, 2001
Mace NL, Rabins PV. The thirty-six hour day: a family guide to
caring for persons with Alzheimer’s disease, related dementing
illness, and memory loss in later life, rev. Warner Books, 2001
Mittelman MS, Epstein C. The Alzheimer’s health care handbook:
how to get the best medical care for your relative with Alzhei-
mer’s disease, in and out of the hospital. Marlowe & Company,
2003
Rose L. Show me the way to go home. Elder Books, 1995
Shanks LK. Your name is Hughes Hannibal Shanks: a caregiver’s
guide to Alzheimer’s disease. University of Nebraska Press, 1996
Newsletters
Alzheimer’s Association: National and local chapter newsletters
Lifelong. Monthly newsletter of the American Federation for Aging
Research (www.afar.org)
The Caregiver. Newsletter of the Duke Alzheimer’s Family Support
Program. Available along with other publications on www.geri
.duke.edu/service/dfsp/index.htm or by calling 919-660-7510.

____

*This guide is adapted from Kahn D, Gwyther LP, Frances A, et al. A
Guide for Families and Caregivers. In The Expert Consensus Guideline
Series: Treatment of Agitation in Older Persons with Dementia, Postgrad Med
Special Report April 1998, pp 81–88. Treatment recommendations in this
guide are based on a recent survey study of experts published in
Alexopoulos GS, Jeste DV, Chung H, et al. The Expert Consensus Guideline
Series: Treatment of Dementia and its Behavioral Disturbances. Postgrad
Med Special Report January 2005. The authors thank the following orga-
nizations for their valuable help in reviewing this guide: Alzheimer’s
Association, American Federation for Aging Research, and National
Citizens’ Coalition for Nursing Home Reform. Abbott Laboratories, Eli
Lilly and Company, Forest Pharmaceuticals, Inc., and Pfizer Inc. provided
independent educational grants in support of this project. An Adobe
Acrobat file of this guide can be downloaded at www.psychguides.com