# Chapter 4

## 

## Dealing with 

## Challenging Behaviors

# *We all have behaviors. Behaviors are demonstrations of who we are and how we communicate our response to daily living.^1^*

### Five General Principles About Behavior

-   **Behavior varies from person to person.** While it is possible to
    list behaviors that are common to dementia, it is not possible to
    predict which, if any, behavior a particular resident will display
    in the course of her illness. Some people display traits that are
    exaggerated versions of their former personality (e.g., a former
    boxer who becomes more aggressive) while others do things that seem
    entirely out of character (e.g., the minister's wife who swears like
    a pirate). People have good days and bad days, and behaviors will
    fluctuate accordingly. Behaviors also change as the disease
    progresses.

#### 2. Loss of control is not deliberate. People with Alzheimer's disease are capable of a full range of behaviors --- positive to negative--- just as we all are. Due to the damage to their brains, however, they do not have the same ability to plan, initiate, and control the behaviors they display. People with Alzheimer's are not being deliberately difficult or manipulative, and they are not trying to drive you crazy! These residents are simply reacting in the moment to their feelings and to the world around them. They are doing the best they can with a disabling disease.

**3. Behavior does not occur in a vacuum.** Behaviors displayed by
residents with dementia are related to the loss of cognitive capacities
and are often triggered by internal distress or something in the
environment that is causing fear, confusion or frustration.

4.  **Behavior is communication.** As verbal skills diminish, behavior
    becomes the resident's primary mode of communication. Therefore,
    always ask: "What is the behavior saying about the resident's
    thoughts, feelings, and perceptions that she cannot express in
    words?" Is she in pain? Frightened? Confused? Is there an unmet
    need? For example, pacing or anxious, repetitive speech may mean
    that the resident is hungry or needs to go to the bathroom.

**5. Positive approaches work best.** Use a friendly, reassuring,
helpful approach that respects the resident with dementia as an adult.
Negative approaches such as demands, threats, or scolding will not be
effective and may provoke a catastrophic reaction, making a difficult
situation even worse.

##### 

##### 

##### Behaviors Common to Dementia

-   Repetitive speech or actions

-   Neglect of personal hygiene and grooming

-   Swearing or tactlessness

-   Wandering

#### Sundowning (increased restlessness or agitation at the end of the day)

#### Shadowing (following others)

-   Apathy or withdrawal

-   Hostility or aggression

-   Hoarding

-   Sleep disturbances

-   Paranoia and suspiciousness (e.g., false accusations about people
    stealing from them)

-   Delusions (beliefs that are contrary to fact)

-   Hallucinations (false perceptions of something that is not really
    there)

-   Decreased awareness of personal safety

-   Forgetting what is private behavior (e.g., urinating in a plant pot,
    cleaning dentures at the table, disrobing or masturbating in public)

-   Catastrophic reactions (extreme emotional responses such as yelling,
    crying or striking out that seem out of proportion to the actual
    event)

> Source: Alzheimer's Disease and Related Disorders Association, Inc.
> 2002.

### Possible Causes of Challenging Behaviors^2^

### 

#### Physical Causes

-   Effects of medication

-   Impaired vision or hearing

-   Acute illness (e.g., urinary or respiratory infection)

-   Chronic illness

-   Pain or physical discomfort

-   Constipation

-   Dehydration

-   Fatigue .

#### Emotional Causes

-   Depression

-   Fear

-   Frustration

-   Embarrassment

-   Unable to communicate needs or articulate feelings.

#### Environmental Causes

-   Environment too large

-   Too much clutter

-   Excessive stimulation (too loud, bright, everyone talking at once)

-   Too little stimulation (bored, lonely)

-   No orientation information or cues (e.g., all doors look the same on
    the hallway)

-   Too many choices or ideas at once

-   Unstructured or unfamiliar environment

#### Task-Related Causes

-   Too complicated

-   Too many steps combined

-   Task unfamiliar; requires new learning

#### 

#### Responses To How Individual Is Approached Or Treated 

-   Hurrying or rushing

-   Impatience

-   Being preoccupied; not focusing on the resident

-   Quizzing with memory questions

-   Commands

-   Talking loudly

-   Negative demands ("No," "Don't," "Can't," "Should")

-   Criticizing, scolding, shaming

-   Trying to argue or convince

-   Long explanations

-   Reality orientation

-   Talking down to the resident or talking about them as if they are
    not there.

##### 

##### The Parable of the Lighthouse

# 

# Collision: A True Log

> **Signalman Alpha**: This is Signalman Alpha. Please divert your
> course fifteen degrees to port to avoid imminent collision....
>
> **Signalman Bravo**: This is Signalman Bravo. Recommend you come right
> fifteen degrees to avoid imminent collision....
>
> **Signalman Alpha**: This is Signalman Alpha. We are a large naval
> vessel. I say again, change course to avoid collision...
>
> **Signalman Bravo:** This is Signalman Bravo. I repeat, change course
> to starboard immediately.
>
> **Signalman Alpha**: This is the Captain of the aircraft carrier USS
> Enterprise, a 75,000-ton United States Naval warship. Get out of the
> way, now!
>
> **Signalman Bravo:** This is a lighthouse keeper. Your call.
>
> *Author Unknown*

*Remember:* Just like the Lighthouse in the story above, people with
Alzheimer's cannot change the course of their disease. So you must
either change yourself or change the environment. Here are some
suggestions to help you develop a strategy for change.

### Problem Solving Strategies

#### 

#### Ask questions

-   What exactly is the behavior?

-   What was happening just before the behavior occurred?

-   When does it happen? Early morning? Late afternoon?

-   How often has it happened?

-   Where does it happen? In the lobby? The hallway? The lounge?

-   Why is the behavior a problem? For whom?

-   How was the behavior handled? Did it work? Keep a Log

####### 

#### Keep a log

####### Document the behavior responding to the questions above. 

-   See if you can determine a pattern.

**Look for triggers**

####### Physical condition

####### Emotional condition

####### Uncomfortable or confusing environment

####### Difficult Task

-   Provocation by others.

### 

### Step into the resident's shoes

-   Try to see the situation from the resident's perspective.

## 

## Pay attention to nonverbal cues

-   Be sensitive to the resident's mood, facial expression, tone of
    voice and body language.

#### Explore potential solutions

-   Alert the Resident Service Coordinator or Property Manager to the
    situation.

-   Carefully document your observations.

-   Talk to the resident.

-   Use good communication skills when approaching the resident \[see
    Chapter 3\].

-   Try to get the resident to agree to a medical evaluation or a home
    nursing visit to determine the cause of the dementia and to rule out
    physical or medical problems that may be creating an excess
    disability.

-   Proceed with steps for emergency and non-emergency situations as
    outlined in Chapter 6.

-   Consider modifying the resident's environment to make it easier for
    him to manage (e.g., an automatic shut-off for the stove or a
    dark-colored toilet seat).

-   Sponsor an education session about memory loss and dementia for the
    whole building in order to foster a more tolerant community.

-   Call the Maine Alzheimer's Association's Helpline (1-800-660-2871)
    for help in brainstorming possible solutions and referral sources.

-   Refer the resident to appropriate supportive services.

-   Involve Adult Protective Services if the resident is at risk due to
    abuse, exploitation or self-neglect.

-   Explore alternative living arrangements if the resident's needs can
    no longer be met in independent housing.

### Tips For Responding To The Resident With Dementia

-   Stay calm and be understanding. Remember: the resident will mirror
    your mood.

-   Acknowledge feelings. *"You seem upset about . . . " "You're
    thinking about . . . " or "You're missing your mother . . . your
    home,"* etc*.* Then encourage venting or reminiscing.

-   Reassure: *"It's okay. I'll help you."*

-   If the resident begins to get upset, change the subject and distract
    his attention to something else. (e.g, *"What beautiful flowers. You
    must have a green thumb.")*

-   Ask the resident to help you.

-   Look for reasons for the behavior**.**

-   Accept the behavior as a reality of the disease and try to work
    through it.

-   Explore various solutions.

-   Be patient and flexible.

-   Acknowledge requests and respond to them.

-   Find other outlets for the behavior.

-   Encourage the use of memory aides (notes, reminders, calendars)
    whenever feasible.

-   Do not argue or try to convince.

-   Do not take behaviors personally.

-   If the resident accuses you of stealing, don't argue and don't take
    the behavior personally. False accusations are not uncommon because
    people with dementia can't remember where they leave their
    belongings and may misinterpret the statements and actions of those
    around them. Be calm and reassuring. Respond to the feelings behind
    the statement and offer to help look for the item. *"You must be
    very upset. Let's look for your purse."* Take another person along
    whenever you enter the resident's apartment.

**Strategies For Specific Behaviors**

The coping strategies suggested in the Appendices that follow have been
compiled from a number of sources, including Alzheimer's Association
brochures and training materials, newsletters, books and articles. For
the most part, these strategies are geared for family caregivers, or for
professional staff providing direct care. Housing staff may want to bear
in mind the following:

-   When it comes to challenging behaviors, there is no cookbook or
    magic formula. Finding a solution that works for a particular
    individual in a particular situation is largely a matter of trial
    and error.

-   Even when a solution is found, it may not work every time. And, in
    any event, adjustments will need to be made as the disease
    progresses and new behaviors present themselves.

-   While housing staff are not family, neither are they direct-care
    providers. However, these strategies represent accepted practice in
    the dementia care community. These are approaches that accept the
    reality of the disease rather than attempting to change the
    resident. They seek to prevent or minimize problems while respecting
    the resident and supporting his or her remaining strengths. We
    invite and encourage housing staff to review these suggestions and
    adapt and apply them in ways that are consistent with the
    regulations governing your own setting and job description.

### Sources

1.  *Alzheimer's Disease: Activity-Focused Care* (Second Edition), by
    Carly R. Hellen, Butterworth-Heinemann, Boston, 1998. Page 295.

2.  *Understanding Difficult Behaviors,* by Anne Robinson, et. al.,
    Geriatric Education Center of Michigan, Eastern Michigan University,
    1996.

3.  Adapted from: *Steps to Understanding Challenging Behaviors,*
    Alzheimer's Disease and Related Disorders, Association, Inc., 1996.

**Resources And Further Reading**

1.  *"Home Is Where I Remember Things:"A Curriculum for Home and
    Community Alzheimer Care, Home and Community Alzheimer Care,* by
    Lisa P. Gwyther, Duke University Medical Center, Durham, North
    Carolina, 1997. To order, contact the Maine Alzheimer's Association
    toll-free at 1-800-660-2871 or visit the web site at
    [www.mainealz.org](http://www.mainealz.org/).

2.  *The 36-Hour Day* (Third Edition), by Nancy L. Mace and Peter V.
    Rabins, The Johns Hopkins University Press, Baltimore, 1999. To
    order, contact the Maine Alzheimer's Association toll-free at
    1-800-660-2871, or visit the web site at
    [www.mainealz.org](http://www.mainealz.org/).

3.  *Understanding Difficult Behavior: Some Practical Suggestions for
    Coping with Alzheimer's Disease and Related Illnesses,* by Anne
    Robinson, et al., Geriatric Education Center of Michigan, Eastern
    Michigan University, 1989. To order, contact the Maine Alzheimer's
    Association toll-free at 1-800-660-2871, or visit the web site at
    [www.alz.org](http://www.alz.org/).

4.  *Caregiving at a Glance: Fingertip Help for Families Taking Care of
    People With Alzheimer's Type Illnesses,* (Second Edition), by Lin E.
    Noyes, Family Respite Center, Falls Church, Virginia, 2000. To
    order, contact the Maine Alzheimer's Association toll-free at
    1-800-660-2871, or visit the web site at
    [www.alz.org](http://www.alz.org/).

5.  *Caring for People With Dementia: A Training Guide,* published by
    The Training Collaborative, a joint project of the Alzheimer's
    Association, Maine Chapter; the Alzheimer's Care Center, Gardiner;
    Muskie School of Public Service at the University of Southern Maine;
    and the Maine Alzheimer's Project, April 1998. For more information,
    contact the Maine Alzheimer's Association toll-free at
    1-800-660-2871.

6.  Alzheimer's Awareness Training Packet, developed by Evelyne
    Tunley-Daymude, Ph.D., Director of Education, Alzheimer's
    Association Alaska Chapter. For more information, call
    1-800-478-1080.

7.  *Alzheimer's Disease: Activity-Focused Care* (Second Edition), by
    Carly R. Hellen, Butterworth-Heinemann, Boston, 1998. To order,
    contact the Maine Alzheimer's Association toll-free at
    1-800-660-2871, or visit the web site at
    [www.alz.org](http://www.alz.org/).

8.  *Behaviors in Dementia: Best Practices for Successful Management,*
    edited by Mary Kaplan and Stephanie B. Hoffman, Health Professions
    Press, Baltimore, 1998.

-   You can also order the following brochure by calling the Maine
    Alzheimer's Association at 1-800-660-2871, or call your local
    chapter.

```{=html}
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-   *Steps to Understanding Challenging Behaviors*

# Appendix 4.1 

**Bathing:**

**[Tips for Families and Direct Care Providers]{.underline}**

Keeping the Alzheimer's resident clean and well groomed can be a
challenge. A depressed resident may loose her desire to bathe while
another resident may feel embarrassed about getting undressed or become
frightened by running water or mirrors.

For the resident with Alzheimer's, it's easy to feel confused and
overwhelmed by simple daily routines such as bathing and grooming. If
the resident seems afraid, stressed, or resistant to bathing, try to
determine the reasons why by asking the following questions.

**Evaluating The Situation**

**Physical/Psychological Factors**

-   Does the resident seem depressed?

-   Is there a physical illness or infection?

-   Does the resident seem overly sensitive to water or changes in water
    temperature?

**Environmental Factors**

-   Is the resident sensitive about having someone else in the bathroom?

-   Is the resident able to find the bathroom and see clearly once he or
    she enters it?

-   Is the room temperature too cold?

-   Is the water temperature too hot or cold? Or is the water pressure
    too intense? Is the water in the tub too deep?

**Special Concerns**

-   Is the resident afraid of falling, running water or soap?

-   Or is the resident confused over such tasks as turning on the water
    or filling the sink?

Once you\'ve determined the answers to these questions, you\'ll be in a
better position to manage the bathing routine.

### 

### Action Steps

** Have reasonable expectations**

Keep in mind that frequency of washing and bathing is a personal
preference. Some people may not feel the need to shower and/or wash
their hair every day. In these cases you might want to alternate a
sponge bath with a more complete bath or shower.

*Continued*

** Adapt to the resident\'s needs, routines, and preferences**

If the resident is used to taking a shower in the morning or a bath at
night, try to maintain that routine. Changing from day to night might
distress the resident. Also keep in mind that a resident may refuse to
take a bath for an unfamiliar caregiver of the opposite sex.

** Prepare the bathroom in advance**

-   Have the towels ready.

-   Draw the water in the bathtub and test the temperature.

-   Pre-measure the shampoo.

-   Develop a soap pocket in the washcloth so that the resident can wash
    himself.

-   Keep the bathroom warm and comfortable.

** Gently prepare the resident for the bath**

Be directive at bath time by using such phrases as, \"Your bath is
ready.\" In this way, the resident will focus on each step of the task
instead of whether or not she needs or wants a bath. If the individual
continues to resist the idea of bathing, distract her for a few moments
and then try again.

** Make the bathroom safe**

-   Always check the temperature of the water. Keep in mind that the
    resident may not be able to judge temperature.

-   Avoid using bubble bath or bath and shower oils that would make the
    tub or shower stall slippery.

-   Keep in mind that to people with Alzheimer's disease, showers are
    often more dangerous and frightening than baths. If you must use a
    shower, install grab-bars and use a tub seat.

-   Never leave a resident alone in the bath or shower.

-   Consider using a hand-held shower.

-   Use only two to three inches of water in the tub and make sure there
    are rubber mats or decals on the tub\'s bottom.

-   Use a non-slip bath mat and make sure that the bathroom floor is
    free from puddles. Some caregivers install carpeting in the
    bathroom.

** Take care in giving the bath**

-   Gently coach the resident during each step of the bath, reminding
    him of the areas that need washing. Keep in mind that you may need
    to complete a part of the bath or shower yourself.

-   Plan to do a project such as hair washing in the morning when the
    resident is well rested. Get the individual to participate as much
    as possible.

-   Avoid using harsh deodorant soaps unless there\'s a serious problem
    with incontinence, in which case there are special soaps available.

*Continued*

-   Make sure that the resident washes the genital area, especially if
    incontinence is a problem. Also make sure that the resident washes
    within folds of flesh and under the breasts.

-   After the bath or shower is completed, check to see that the
    resident is completely dry.

-   Check the resident for red areas of skin, rashes and sores. If the
    problem is serious, consult a physician. Keep in mind that pressure
    sores and skin ulcers can develop quickly on people who sit or lie
    down much of the time.

-   Use a body powder, cornstarch or baby powder under the breasts or in
    creases or folds of the skin, and use a lotion to keep skin soft and
    flexible. If the individual resists deodorant, try baking soda.

**Appendix 4.2**

**Combativeness:**

**[Tips for Families and Direct Care Providers]{.underline}**

### Looking For Triggers

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

**Dressing**

*Example:* The resident who can\'t get an arm through a sweater may grow
increasingly upset and start to thrash around.

**Bathing**

*Example:* The resident who\'s frightened by running water in the
bathtub may push away a caregiver who is trying to give her a bath.

**Eating**

*Example:* The resident who doesn\'t like a certain type of food may
refuse to eat it.

Keep in mind that combativeness takes many forms. Sometimes the resident
may simply try to push your hand away, while at other times the resident
may resist or strike you. Deal with combativeness by trying to examine
the underlying causes. Consider the following list of potential
triggers.

**Physical Causes**

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

**Environmental Causes**

Is the resident overstimulated by loud noises, people, or physical
clutter? Is the environment unfamiliar? Does the resident 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 resident
picking up on your own stress and irritability? Are you making the
resident more frustrated by being overly negative or critical?

*Continued*

### 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 resident isn\'t necessarily angry at you. Instead,
she may misunderstand the situation or be frustrated by her own
disabilities.

** Avoid teaching**

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

** Use distraction**

Don\'t persist in making the resident perform a particular task,
especially if she has repeatedly been unsuccessful. If you see the
resident 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 resident to a quiet room, have
a cup of tea or go for a walk.

** Communicate directly with the resident**

Avoid expressing anger or impatience in your 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 resident. For example, you might
want to put your arm around the resident or give her a kiss. In
addition, follow these tips:

-   Speak slowly and clearly.

-   Use short, simple sentences.

-   Approach the resident slowly and from the front.

-   Use repetition and frequent reminders.

** Decrease your level of danger**

Assess the level of danger, for yourself and the resident. In other
words, if the resident becomes combative, ask yourself: \"How much
trouble am I in---and what can I do about it?\" Often you can avoid harm
by simply taking five steps back and standing away from the resident for
a short period of time. On the other hand, if the resident 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 resident. By fighting with her, you\'ll probably make
her even more frustrated and anxious.

*Continued*

** Experiment with objects that have a soothing effect**

Some caregivers believe that stuffed animals have a soothing effect on
the resident, 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 resident combative.
For example, if the resident 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, outbursts are sometimes
preceded by restlessness, frustration, fidgeting, or blushing.

** Restructure tasks and the resident\'s environment**

-   Simplify tasks or plan more difficult tasks for the time of the day
    when the resident is at her best.

-   Give the resident adequate time to respond to your directions or
    requests.

-   Allow the resident to make some choices, but limit the total number
    of choices.

-   Break down each task into small steps and allow the resident to
    complete one step at a time.

-   Keep the environment calm, quiet and clutter free.

**Appendix 4.3**

**Hallucinations:**

**[Tips for Families and Direct Care Providers]{.underline}**

### Hallucinations vs. Delusions

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. For example, a resident with a
delusion may think that family members are stealing from him or that
he\'s in another place when he\'s actually still in his own home.

A hallucination, in contrast, is a false perception of objects or
events, and is sensory in nature. When a resident with Alzheimer\'s has
a hallucination, he can see, hear, smell, taste, and 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. For
example, a resident may see the face of a former friend in a curtain or
see insects crawling on his hand. In other cases, he may hear someone
talking and may even talk back to the imagined person.

Hallucinations can be frightening to the resident and the caregiver. On
some occasions, the resident may see threatening images or just ordinary
images 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 resident\'s hallucinations or prevent them from occurring. Some
ideas to follow for handling a resident with hallucinations are:

### Action Steps

####  Obtain medical guidance

-   Ask a physician to evaluate the resident 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 resident\'s eyesight or hearing checked or make sure that
    she 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 symptoms such as
    over-sedation, increased confusion, tremors or tics.

*Continued*

####  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 resident? Is it leading him to do something dangerous? Does the
sight of an unfamiliar face cause the resident to become frightened? If
so, react calmly and quickly with reassuring words and comforting touch.

** Respond with caution**

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

####  Offer reassurance

Reassure the resident 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 resident\'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 resident 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 resident\'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 resident 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 resident sees or hears or getting
involved in an argument.

*Continued*

####  Check out the reality of the situation

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

#### 

####  Modify the environment 

If the resident 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 shadows, or for glare, reflections or
    distortions from the surfaces of floors, walls, and furniture.

-   If the resident insists that he 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 resident doesn\'t recognize his own reflection.

-   On other occasions, you may want to turn on more lights and make the
    room brighter.

You can ease the fears of the resident 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 resident\'s feelings without agreeing with the
hallucination.

**Appendix 4.4**

**Suspicion and Paranoia:**

**[Tips for Families and Direct Care Providers]{.underline}**

"You stole my purse! It was right here! Get away from me! Leave me
alone! I hate you!"

These words may be all too familiar to caregivers, families and friends
of individuals with Alzheimer's disease or related disorders.
Suspiciousness is very common in people who suffer from dementia. Some
even project their own feeling of frustration and hostility onto another
person, something known as "paranoia." The uncertainty, loss of control
and confusion experienced by those with dementia contributes to this
most upsetting type of behavior.

### 

### What Causes It?

Think about it . . . if you had difficulty recognizing people, you might
approach them cautiously. If you were self-absorbed, you might assume
that conversations you overheard were about you. When you have
difficulty understanding things, it is easy to become worried, scared
and suspicious.

These tendencies often lead to accusations, angry outbursts, and even
delusions (thoughts that are contrary to reality) or hallucinations
(seeing, hearing, or sensing things that are not really there).

Suspiciousness and paranoia may be some of the most difficult behaviors
to deal with in a residential setting.

### 

### 

### Check Potential Causes

-   Visual problems or hearing loss may result in hearing or seeing
    things.

-   Insufficient lighting may play tricks.

-   Unfamiliar noises or changes in the surrounding may account for
    fear.

-   Physical illnesses, infections, medication or dehydration may be to
    blame. Watch for any signs of pain. Increase your vigilance to be
    sure that the resident is not eating or imbibing anything
    inappropriate.

-   The source of suspicion may be real! Check it out first.

-   Memory loss may lead to the sensation that something is wrong,
    leading to frustration when the resident cannot explain or name the
    difficulty.

> *Continued*

-   Assess the problem. What happened right before the resident became
    suspicious? Has something like this happened before? Was it in the
    same room or at the same time of day?

### 

### Action Steps

-   Reassure and comfort with a gentle touch by holding the resident's
    hand and by using calming words and gestures. For example, "Don't
    worry. I'll help you find it. It's all right to feel that way."

-   Focus on and acknowledge the feelings surrounding the situation
    rather than arguing or reasoning. "You're feeling afraid (angry). I
    understand how upsetting this is. This is very frightening for you,
    isn't it?"

-   Take the resident's mind off the problem by using familiar
    distractions. Take a walk; turn on some music; bring out a favorite
    activity, photo album, or game.

-   Accept the resident's belief that this is happening rather than
    arguing or challenging. "I see that your glasses are not right here.
    Let's look for them."

-   When you have identified possible environmental causes, change the
    surroundings.

-   Cover mirrors if they cause confusion. Many people with dementia do
    not recognize their own images.

-   Brighten the room.

-   Restore furniture to its original placement if it has been moved.

### When There Are Accusations Of Stealing . . . 

-   Help the resident look for lost objects rather than scolding.

-   Keep a spare set of frequently lost items.

-   Identify places where valuables are stored and keep track of
    favorite hiding places.

### What About Medications?

Obtain advice about medication from a physician.

**Appendix 4.5**

**Incontinence**

**[Tips for Families and Direct Care Providers]{.underline}**

Incontinence, which includes loss of bladder and/or bowel control and
bedwetting, is a difficult problem if you\'re caring for an Alzheimer's
patient. Incontinence is common among Alzheimer's patients---especially
those in the latter stages of the disease.

Although you can manage incontinence by changing the patient\'s routine,
clothing or

environment, at some point you\'ll need to accept incontinence as a
permanent condition of the disease.

If incontinence is a new behavior, your first and most important step is
to identify the possible reasons for this loss of control. Consider the
following possible causes.

### Medical Conditions

Could the reason be medical? For example, could the resident have a
urinary tract infection, constipation, or a prostate problem? Or is
there an illness such as diabetes, stroke, or Parkinson\'s disease? Do
movement difficulties make it hard for the resident to get to the
bathroom in time? If the answer to any of these questions is \"yes,\"
you may want to consult with his or her physician.

### Stress

Is the incontinence caused by stress or movement? For example, does the
resident release urine with a sneeze, cough or laugh? Does fear of an
embarrassing accident make the resident want to continually visit the
bathroom? Keep in mind weak pelvic muscles in a woman could cause
uncontrollable loss of urine.

#### 

### Medication

Is the resident on medication that might intensify the behavior? Is it
possible that tranquilizers, sedatives, or diuretics contribute to
incontinence? Keep in mind, for example, that some tranquilizers can
relax the bladder muscles. Medications used to treat incontinence can
cause such side effects as dry mouth and eye problems.

#### 

### Dehydration 

Did anyone withhold fluids when the resident started to lose bladder
control? If so, the resident might become dehydrated. Dehydration can,
in turn, create a urinary tract infection, which can lead to
incontinence.

### Diuretics

Are you giving the resident fluids that might produce a diuretic effect
(increased urinating)? Beverages such as coffee, colas, and tea might
contribute to incontinence.

*Continued*

### 

### Environment

Are there problems in the environment? Is it possible that the resident
can\'t find the bathroom? Does the resident have too far to travel to
reach the bathroom in time? Is the resident afraid of falling? Are there
obstacles in the path such as chairs or throw rugs? Is the path well
lighted?

### 

### Clothing

Does the resident have problems undressing in the bathroom? Are the
zippers and buttons on clothing causing problems?

### Action Steps

####  Innovate

Be willing to experiment with new concepts and ideas. Keep in mind that
every person is different. What works for one person may not work for
another.

#### 

####  Understand

Remember that accidents are embarrassing. Be matter-of-fact and
understanding and avoid blaming or scolding the individual. When the
resident is successful, use praise, encouragement and reassurance.

** Communicate**

Encourage the resident to tell you when she thinks she needs to use the
bathroom. The resident may not be able to say, \"I need to use the
bathroom. \"Watch for visible cues that the resident needs to use the
bathroom. For example, the resident may get restless, make unusual
sounds or faces, or pace around the room.

** Plan ahead**

Train yourself to respond to the resident\'s routine and schedule.
Identify when accidents occur and plan ahead. If an accident happens
every two hours, you\'ll need to get the resident to the bathroom before
that time. You might also find it helpful to keep a notebook or log that
notes when the person uses the bathroom.

** Change and adjust**

Be patient and allow the resident adequate time in the bathroom. In
addition, rearrange the environment to make it easier for the resident
to use the bathroom. For example, leave on a nightlight in the bathroom
and bedroom. Put a picture of a toilet on the bathroom door, or paint
the bathroom door a color different than the wall. If accidents occur at
night, consider a portable commode or urinal near the bed.

*Continued*

** Simplify clothing**

Keep the resident\'s dress simple and practical. Instead of choosing
clothing with zippers and buttons, choose easy-to-remove and
easy-to-clean styles such as sweat pants with elastic waistbands.
Consider using such products as pads or protective bedding, adult
diapers, or panty liners for female patients.

#### 

####  Follow-up

Make sure the resident uses the bathroom. You may need to assist in
removing clothes, wiping or flushing. You might also want to stimulate
urination by giving the resident a drink of water or running water in
the sink. Keep sensitive skin areas clean with regular washing and
application of a powder or ointment.

** Control**

To help control night incontinence, limit the resident\'s intake of
liquids after dinner and in the evening and cut down on drinks such as
cola, coffee, tea, and grapefruit juice. Encourage the resident to drink
at least one-and-a-half quarts (six cups) of fluids daily. For variety,
you might want to introduce decaffeinated herbal teas, decaffeinated
coffee, jello, or fruit juice.

Help the resident with Alzheimer\'s retain a sense of dignity despite
the problems with incontinence. Reassuring and non-judgmental statements
will help lessen feelings of embarrassment.

**Appendix 4.6**

**Sundowning and Shadowing**

**[Tips for Families and Direct Care Providers]{.underline}**

### 

### Sundowning

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 are not true. Or they may pace or wander around
the house.

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 resident with Alzheimer\'s can\'t see well in dim light and
    becomes confused.

-   The impaired resident may have a hormone imbalance or a disturbance
    in his \"biological clock.\"

-   The resident with Alzheimer\'s tires at the end of the day and is
    less able to cope with stress.

-   The resident is involved in activities all day long and grows
    restless if there\'s nothing to do in the late afternoon or evening.

-   The caregiver communicates fatigue and stress to the resident with
    Alzheimer\'s and the resident becomes anxious.

### Action Steps

** Try these ways to lesson 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 resident to use up extra energy through exercise. For the
    resident who tends to pace or wander in the evening, you may want to
    arrange at least one or two brisk walks during the day.

-   Control the resident\'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.

*Continued*

-   An early dinner or late afternoon snack may also help.

-   It\'s important to provide regular activities and you may want to
    discourage napping during the day if nighttime sleeplessness 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 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 resident to use the bathroom. Consider a
    bedside urinal or commode. Or encourage the resident to use the
    bathroom before going to bed.

-   Keep rooms adequately lit. Good lighting may reduce the resident\'s
    confusion. A night-light may prevent the resident from becoming
    agitated in unfamiliar surroundings.

** Remain flexible and consider the resident\'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. Tell the resident experiencing sundowning what
    time it is and what\'s going on in the house. Let her know you\'re
    there and will remain there. Then try to involve her in a meaningful
    activity such as setting the table, folding towels, doing dishes, or
    sweeping the floor.

-   Avoid arguing or asking for explanations. The resident may not know
    what\'s wrong or be able to tell you if he does. Keep in mind that
    the resident 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 resident with
    Alzheimer\'s can\'t sleep at night doesn\'t mean you should go
    without sleep. Arrange for another family member to supervise the
    resident at night. Or arrange the room so that it is safe enough
    (and has locked doors) to let the resident stay awake and pace there
    while you nap or sleep in another room.

*Continued*

### Shadowing

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

### 

### Action Steps

 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 shadowing resident?

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 resident 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 resident by
    saying, \"I\'ll be back when the timer goes off.\"

-   Try to keep the resident occupied. Find simple, repetitious
    activities to occupy the resident 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. Or provide the resident with Alzheimer\'s with
    headphones for listening to calming music.

-   Consider \"gum therapy\" or \"cereal therapy.\" If the resident with
    Alzheimer\'s is able to chew and swallow easily, you may want to
    give him/her sugarless gum. Or consider providing the resident with
    a non-breakable bowl of high-fiber, low-sugar cereal. By having
    something to snack on, the resident 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 resident with Alzheimer\'s
disease, such as fear, frustration, and anger, may help you accept the
resulting behaviors. Providing reassurance and helping the resident
respond to his or her changing environment can help you manage the
resident\'s behavior.

**Appendix 4.7**

**Agitation**

**[Tips for Families and Direct Care Providers]{.underline}**

### 

### What Is Agitation? 

The term agitation is used to describe a large group of behaviors
associated with Alzheimer's disease. As the disease progresses, most
people with Alzheimer's experience agitation in addition to memory loss
and other thinking symptoms.

In the early stages of the disease, people with Alzheimer's may
experience personality changes such as irritability, anxiety, or
depression. As the disease progresses, other symptoms may occur,
including: sleep disturbances; delusions; hallucinations; pacing,
constant movement or restlessness; checking and rechecking door locks or
appliances; tearing tissues; emotional distress, and uncharacteristic
cursing or threatening language.

Agitation may be caused by a number of different medical conditions and
drug interactions, or by any circumstances that worsen the person's
ability to think.

Situations that may lead to agitated behavior include moving to a new
residence or nursing home, other changes in the environment or caregiver
arrangements, misperceived threats, or fear and fatigue resulting from
trying to make sense out of a confusing world.

Agitated behavior can be disruptive and painful to both the person with
Alzheimer's and for the caregiver. Agitation may interfere with the
ability of the person with the disease to carry out the activities of
daily living, and it may increase the risk of harm to the affected
individual and others. Caregivers may be frightened, upset, or simply
exhausted by the demands of caring for a person who is agitated.

**Medical Evaluation For Agitation**

A person exhibiting agitated behavior should receive a thorough medical
evaluation, especially when agitation comes on suddenly. The treatment
of agitation depends on a careful diagnosis, determination of the
possible causes, and the types of agitated behavior the person is
experiencing. With proper treatment and intervention, significant
reduction or stabilization of the symptoms can often be achieved.

The symptoms of agitation often reflect an underlying infection or
medical illness, including any of the following:

-   Pain or discomfort caused by pneumonia

-   Fever due to a urinary tract infection

-   Dizziness and pain from an untreated ear or sinus infection

*Continued*

In some cases, prescription medication can cause agitation. This is most
likely to occur when multiple medications are used, and the medications
interact. Uncorrected visual or hearing loss may also lead to agitated
behaviors. Treating the underlying medical condition may lessen the
agitation.

**Behavioral Interventions For Agitation**

There are two distinct types of treatments for agitation: behavioral
interventions and prescription medications. Behavioral interventions
should be tried first. In general,

steps to managing agitation include:

-   Identifying the behavior

-   Understanding its cause

-   Adapting the caregiving environment to remedy the situation.

Correctly identifying what has triggered agitated behavior can often
help in selecting the best behavioral intervention. Often the trigger is
some sort of change in the person's environment:

-   change in caregiver

-   change in living arrangements

-   bathing

-   travel

-   being asked to change clothing

-   hospitalization

A key principle of intervention is redirecting the affected individual's
attention, rather than arguing, disagreeing, or being confrontational
with the person. Additional intervention strategies include the
following:

-   Simplifying the environment

-   Simplifying tasks and routines

-   Allowing adequate rest between

-   Removing guns

-   Using lighting to reduce confusion and restlessness at night

-   Stimulating events

-   Using labels to cue or remind the person.

**Medications To Treat Agitation**

Medications can be effective in the management of some symptoms of
agitation, but they must be used carefully and are most effective when
combined with behavioral or environmental changes. Medications should
target specific symptoms so that improvement can be monitored. People
with Alzheimer‚s disease are susceptible to side

*Continued*

effects that require close observation. In general, it is best to begin
treatment with a singlemedication and with low doses. Some of the
medications commonly used to treat the symptoms of agitation include
antidepressant medications for low mood and irritability:

-   citalopram (Celexa^®^)

-   fluoxetine (Prozac^®^)

-   paroxetine (Paxil^®^)

-   sertraline (Zoloft^®^)

Anxiolytics are frequently used for anxiety, restlessness, verbally
disruptive behavior, and resistance:

-   lorazepam (Ativan^®^)

-   oxazepam (Serax^®^)

Antipsychotic medications can help to treat hallucinations, delusions,
aggression, hostility, and uncooperativeness:

-   olanzapine (Zyprexa^®^)

-   risperidone (Risperdal^®^)

Although antipsychotics are among the most frequently used medications
for treating agitation, some physicians may prescribe an
anticonvulsant/mood stabilizer, such as carbamazepine (Tegretol^®^) or
divalproex (Depakote^®^) for hostility or aggression.

Sedative medications, which are used to treat insomnia or sleep
problems, may cause incontinence, instability, falls, or increased
agitation. These drugs must be used with caution, and caregivers need to
be aware of these possible side effects.

**Helpful Hints During An Episode Of Agitation**

 **Slow down.** Back off and ask permission to help, use calm positive
statements, reassure, use visual or verbal cues, add light, offer guided
choices between two options, focus on pleasant events, offer simple
exercise options, or limit stimulation.

-   **Communicate carefully.** Do not raise voice, take offense, corner,
    crowd, restrain, rush, criticize, ignore, confront, argue, reason,
    shame, demand, condescend, force, explain, teach, show alarm, or
    make sudden movements out of the person's view.

-   **Ask questions.** Say: May I help you? Do you have time to help me?
    You're safe here. Everything is under control. I apologize. I'm
    sorry that you are upset. I know it's hard. I will stay until you
    feel better.

*Continued*

**Helpful Hints To Prevent Agitation**

 **Create a calm environment.** Reduce stress, triggers, or danger;
move person to a safer or quieter place; change expectations; offer
security object, rest, or privacy; limit caffeine use; provide
opportunity for exercise; develop soothing rituals; and use gentle
reminders. Avoid environmental triggers: noise, glare, insecure space,
and too much background distraction, including television.

 **Monitor personal comfort**. Check for pain, hunger, thirst,
constipation, full bladder, fatigue, infections, and skin irritation;
ensure a comfortable temperature; be sensitive to fears, misperceived
threats, and frustration with expressing what is wanted.

Source: Alzheimer's and Related Disorders Association, Inc., 2001. This
fact sheet is provided for your information only and does not represent
an endorsement of any prescription medications.