LEARNING TO MANAGE PROBLEM BEHAVIORS

As Alzheimer’s disease progresses, dementia can cause mood swings and changes in the person’s personality and behaviors, including agitation and restlessness, vocal outbursts, wandering, sleep disturbances, “sundowning,” and inappropriate sexual activities. These behaviors can be very stressful for both the person with dementia as well as the caregivers. These challenges can be met by using creativity, flexibility, patience, and compassion. It also helps for caregivers to avoid taking things personally and to maintain a sense of humor.

Managing difficult behaviors effectively calls for special intervention training and education for staff and caregivers. Such training can help providers identify and anticipate problem behaviors and learn diversionary strategies to manage these behaviors. (See also “Resources” at the end of this course.)

Behavioral problems are major reasons why family caregivers decide to seek long-term care for their loved one. Facility staff can gain valuable insights from the family into the person’s behavioral history, which will aid in planning effective interventions. Together with psychological and medical evaluations, this behavioral history can alert staff to important triggers for behavioral problems.

DICE Tool for Problem Behaviors

DICE is a tool that can be used to help understand and respond to behaviors. It involves asking a series of questions in regard to the patient, caregiver, and environment, as summarized in the table below.

DICE TOOL
(UCSF, 2021c)
D	Describe what happens	What does the person do? Is the patient’s safety at risk? How distressing is the behavior to the caregiver? Is the behavior threatening the safety of others? How did the caregiver respond to the behavior? Who else was there when the behavior occurred? How did the behavior relate to other events (e.g., bathing or mealtime)?
I	Investigate possible causes	Recent changes in medications Patient’s limits in the ability to do things Medical conditions Underlying mental health issues Unmet needs Fear, loss of control, embarrassment Change in routine or lack of a daily routine Could a different response have been used? Are expectations realistic? Are there family or cultural issues? Is the environment overstimulating or boring? Is the environment disorientating or lack helpful visual cues?
C	Create a plan	Respond to possible unmet needs Discontinue any high-risk medications Rule out potential medical causes Optimize treatment of mental health issues Promote activity during the day and rest at night Simplify tasks Create meaningful activities Get more assistance Ensure the environment is safe Simplify the environment Set up the environment for the task at hand Enhance the environment with labels, notes, pictures, etc.
E	Evaluate the plan	What was tried? What was helpful or not? What treatments or strategies worked? Were there any unintended side effects? What environmental changes were made, and what was helpful or not? Are there any barriers to trying other strategies or changes?

Agitation and Aggression

Agitation is a state of extreme irritability often characterized by hitting, pacing, yelling, cursing, arguing, threatening, and verbal or physical aggression. This behavior often progresses with the stage of dementia, from mild to more severe. Agitation can be triggered by a number of things, including environmental factors, fear, fatigue, and feelings of abandonment. Often it is triggered when the person perceives that control is being taken away from them.

An agitated person requires an assessment for any physical cause of discomfort or pain. This can include fecal impaction, localized or systemic infection, dehydration, urinary retention, osteoarthritis, or fractures. The person may be hungry or thirsty or may be suffering from inadequate sleep. The following strategies may be helpful:

Give the person space and time to calm down.
Avoid confrontational body language, such as crossing your arms and standing over or directly in front of them.
Avoid criticizing or correcting the person.
Speak slowly, using a low and soothing pitch.
Remember that anger or fear responses naturally subside within seconds in the absence of continued triggers.
Reduce noise, clutter, or number of persons in the room.
Keep routines and maintain a consistent environment, with familiar objects and photographs.
Reduce intake of caffeine, sugar, and other foods that cause energy spikes.
Use gentle touch, soothing music, reading, or taking a walk.
Avoid restraining the person.
Support the person’s independence.
Acknowledge the person’s anger over loss of control and verbalize understanding.
Validate the person’s feelings and then attempt distraction or redirection.
Keep dangerous objects out of reach.
(FCA, 2021b)

Another approach to the problem of agitation is the three Rs: repeat, reassure, and redirect. Using this approach, the caregiver repeats an instruction or answer to a question, reassures the person, and redirects the person to a different activity to divert attention from the problem.

CASE

Mr. Hopkins is a 72-year-old male patient who was admitted to the nursing home three months ago because of his family’s inability to care for him at home any longer. He had been diagnosed with Alzheimer’s six years earlier. Each Sunday he became quite happy during visits from his family, but each time the family got ready to leave, Mr. Hopkins would become more agitated, follow them to the door, and attempt to leave with them. When staff tried to lead him back inside, he would become belligerent and combative. This behavior often resulted in his receiving a medication, which made him drowsy. At one point, a staff member was injured when she fell while trying to avoid Mr. Hopkins’ attempt to strike her.

Nursing home staff and family discussed his behavior and determined that Mr. Hopkins’ agitation may be due to feelings of abandonment. They devised a care plan in which the family would inform the staff 15 minutes before their intended time of departure from visits. The family planned to leave a small memento with Mr. Hopkins at each visit, and a staff member would then begin discussing the memento with him, encouraging some reminiscing. The family would say a quiet goodbye, and Mr. Hopkins would not be allowed to walk them to the door. The staff member would remain with him in his room for approximately 10 minutes after their departure.

This intervention appeared to distract Mr. Hopkins from his feelings of abandonment without changing the nature of the family visits. There were no further incidents of combative behavior from Mr. Hopkins.

Vocal Outbursts

Disruptive vocal outbursts—screaming, swearing, crying, shouting, negative comments to staff and/or other persons, self-talk—become increasingly common as Alzheimer’s progresses, confusion increases, and the ability to communicate is lost. Verbal outbursts are often triggered by fear, anger, depression, grief, confusion, helplessness, loneliness, sadness, impatience, and frustration. Environmental factors may include poor lighting, seasonal changes, overstimulation or lack of stimulation, loud noises, or excessive heat.

Outbursts may also signal physical illness or discomfort, including pain, hunger, thirst, incontinence, constipation, infection, or fatigue. Once the outburst has subsided, a thorough physical assessment may reveal an underlying physical problem, which can then be remedied.

Caregivers are encouraged to remember that the person is not deliberately misbehaving; these are not temper tantrums. React by staying calm and reassuring. Validate the person’s feelings and then try to distract or redirect the person’s attention to something else. Remarks or attacks should not be taken personally, nor should attempts be made to try to reason with the person.

Managing outbursts triggered by environmental or physical factors is simpler than dealing with outbursts that stem from an unknown emotional or psychological cause. Interventions to prevent verbal outbursts may include:

Assess for pain, hunger, thirst, constipation, full bladder, fatigue, infections, and skin irritation.
Avoid being confrontational or arguing about facts.
Redirect the person’s attention.
Remain flexible, patient, and supportive by responding to the emotion, not the behavior.
Create a calm environment. Avoid noise, glare, insecure spaces, and background distractions.
Allow adequate rest between stimulating events.
Provide the person with a security object.
Acknowledge requests and respond to them.
Look for reasons behind each behavior.
Explore various solutions.
Don’t take the behavior personally.
(Alzheimer’s Association, 2021b)

CASE

Mrs. Goh is a 78-year-old woman with Alzheimer’s disease who has been living in a nursing home for the past four years. She is known to have had a stroke resulting in expressive aphasia early in the disease process. Mr. Goh visits his wife daily at mealtimes and feeds her. He also reads to her while holding her hand until she falls asleep.

On his way to visit one day, Mr. Goh was involved in an accident and sustained a hip fracture. He was in the hospital for three weeks and then sent to a rehabilitation unit for short-term physical and occupational therapy. When Mrs. Goh was told about her husband’s accident, her condition began to decline. She became bedridden and uninvolved with any activities of daily living. She also began yelling and screaming for extended periods of time. This behavior became very disruptive to everyone. As her condition worsened, Mrs. Goh was moved to a private room, but it was in the front of the building, making her yelling audible to anyone entering the building.

The treatment team met to devise a plan of care. Their first step was a thorough assessment, with the following conclusions:

Mrs. Goh’s current method of communication is screaming.
She is reacting to the loss of her husband’s visits and other physical and social losses.
She has discovered that screaming brings attention.
By screaming she is able to exert some control over her life.
The screaming occurs in the late afternoon, when she needs to use the toilet, or when she is overly fatigued.
Previous tactics to control Mrs. Goh’s screaming have been ineffective.

After completing the assessment, the following plan was developed and implemented:

No more changes are to be made in Mrs. Goh’s environment.
Routines are to be established with Mrs. Goh’s input, and the same caregivers will provide her care on a daily basis to establish consistency in her daily life.
The activities director will work with Mrs. Goh to add new activities.
Arrangements are to be made for consistent volunteers to visit Mrs. Goh on a daily basis, attempting to establish a routine similar to her husband’s.
Mrs. Goh will be given a bell to ring if she needs something. Otherwise, she will be checked on every two hours.
Caregivers will be instructed to respond quickly to the bell but not to her screaming.

After two months, Mrs. Goh began using the bell to call for assistance. She still yells out occasionally, but this tends to occur when unavoidable changes are made to her routines.

Wandering

Any person that has memory problems and is able to walk is at risk for wandering and getting lost. At least 6 out of 10 people with dementia will wander at least once, fueled primarily by Alzheimer’s disease. If not found within 24 hours, up to half of wandering seniors with dementia suffer serious injury or death (ASAC, 2021).

Wandering occurs for a variety of reasons, such as boredom, medication side effects, or looking for something or someone. Agitation, restlessness, and sleep disturbances all lead to wandering, particularly at night, increasing the risk of injury to the person and others.

Wandering is generally one of two types: goal-directed, in which the person attempts to reach an impossible goal such as going home or going to the store; and non-goal-directed, in which the person wanders aimlessly. Wandering patterns include:

Moving to a specific location
Lapping or circling along a path or track
Pacing back and forth
Wandering at random

Discovering the triggers for wandering are not always easy, but they provide insight into the behavior. Wandering may represent a search for social interaction when the person can no longer communicate verbally. Unable to sleep, the person may walk to keep busy or to find a loved one. Wandering in the late afternoon or early evening may be triggered by a fading memory of leaving work to go home. Wandering may also be caused by a physical need, such as toileting.

The following techniques may be helpful when dealing with the issue of wandering in the home care setting.

Make time for regular exercise to minimize restlessness.
Use large-print signs to mark destinations with a drawing of the activity.
Place a photo of the person as a younger adult on the room door to help the person find “home.”
Ensure that doors have locks that require a key. Position them high or low on the door, as many people with dementia will look only at eye level. It is important to recognize that a danger of this approach is fire safety; the lock(s) must be accessible to others and not take more than a few seconds to open.
Do not try to restrain the person unless there are obvious hazards, such as traffic or harsh weather.
Try to remain calm and reassuring instead of controlling.
Avoid negative or hard commands such as “Don’t go out there!”
Avoid arguing with the person.
Use a barrier, such as a curtain, to mask the door. A stop sign or “do not enter” sign may be effective.
Paint a door to look like a piece of furniture.
Try placing a large “Do Not Enter” sign on exit doors.
Paint a black space on the front porch that may appear to the person with dementia to be an impassable hole.
Add “child-safe” plastic covers to doorknobs.
Do not lock a person with dementia in the home or car unattended.
Consider installing a home security system or monitoring system such as a GPS tracking device. (These may be effective only in areas with good cellphone coverage and in tandem with an attentive person monitoring the devices.)
Put away items such as the person’s coat and purse. Some people will not go out without taking certain articles with them.
Sew ID labels in the person’s clothes or have the person wear an ID bracelet.
Tell the neighbors about the person’s wandering behavior and provide them with a telephone number.
Always have a current photo available should the need arise to report the person as missing.

Caregivers can also leave a copy of the person’s photo on file at the police department or register the person with the MedicAlert + Alzheimer’s Association Safe Return program, which is a nationwide emergency response service for individuals with Alzheimer’s or a related dementia. Registration includes an identification bracelet that should be worn at all times (FCA, 2021b). (See also “Resources” at the end of this course.)

When the person has been admitted to a care facility, the family can help staff identify and anticipate wandering. Family can inform the staff about the person’s lifestyle prior to being diagnosed with Alzheimer’s, which can aid in understanding behavior (i.e., what kind of work the person did; previous patterns of exercise, stress, and response to touch; etc.). Once a person who wanders is identified, the facility can have photographs made and distributed to other units and assign special clothing or identification bands. Facilities should consider painting all doors for staff-only the same color as the wall, while doors the person is expected to find and use should contrast with walls.

Wandering in a safe area can be good exercise for the person with Alzheimer’s disease and help manage non-goal-directed wandering. Many facilities are designed with these safe areas in the form of sheltered courts, gardens, lounges, or pathways (Alzheimer’s Association, 2021b).

SILVER ALERTS

Silver Alert or Code Silver programs exist on a state-by-state basis. As a result, what incidents qualify for Silver Code may differ from state to state.

Silver Alert programs inform law enforcement agencies, media outlets, and the public about missing adults, usually older adults with cognitive disabilities or impairments. The information that is distributed includes photographs, a vehicle description if the person was driving, last known location, home location, and medical condition.

Law enforcement agencies are most often responsible for deciding to activate a Silver Alert. Information is broadcast using dynamic message signs on roadways, radio stations, mobile phones, the internet, and television. Silver Alerts may also involve Reverse 911 or other emergency notification systems to alert nearby residents of the neighborhood surrounding the missing person’s last know location.

(ASAC, 2021)

Sleep Issues and Sundowning

Restlessness, agitation, disorientation, and other troubling behavior in persons with dementia often worsen at the end of the day and sometimes continue through the night. This behavior is referred to as sundowning.

Possible contributing factors to sleep disturbance include:

Mental and physical exhaustion from a full day trying to keep up with unfamiliar or confusing environment
An upset in the biological clock, causing a mix-up between day and night
Reduced lighting that increases shadows, which may cause misinterpretation of what is seen and thereby increase agitation
Disorientation due to inability to separate dreams from reality when sleeping
Sleeping less, which is common among older adults

The following are some strategies to help manage sleep issues and sundowning:

Schedule major activities in the morning or early afternoon hours when the person is most alert.
As much as possible, encourage a regular routine of waking up, meals, and going to bed.
When possible and appropriate, include walks or time outside in the sunlight.
Try to identify triggers that occur before sundowning events.
Reduce stimulation during the evening hours, which may add to the person’s confusion.
Offer a larger meal at lunch and keep the evening meal lighter.
Keep the home well-lit in the evening, which may reduce confusion.
Do not physically restrain the person, as it can make agitation worse.
Try to identify activities that are soothing, such as listening to music.
Discuss with the provider about best times of day for taking medications.
Limit daytime naps.
Reduce or avoid alcohol, caffeine, and nicotine, which can all affect ability to sleep.

If the person is awake and upset, approach in a calm manner, determine what the person may need, gently remind about the time, and offer reassurance that everything is all right. Avoid arguing, and allow the person to pace back and forth, as needed, with supervision (Alzheimer’s Association, 2021b).

CASE

Mrs. Perlman is a 72-year-old widow who was diagnosed with Alzheimer’s eight years ago and is now in the middle stage of the disease. She moved in with her daughter Jeanne about six months after being discharged from the hospital following treatment for pneumonia. Her level of confusion and disorientation has increased since her discharge.

Jeanne began attending a local Alzheimer’s support group once her mother moved in with her, and she has asked for help because her mother becomes “like another person after supper.” She says her mother no longer recognizes her, is disruptive, and can’t be calmed down until she falls asleep. Fortunately, her mother always seems much better in the morning.

The group asks questions to discover what can be done to help Jeanne with what many of them recognize as the problem of “sundowning.” They ask how a typical day goes, and Jeanne says her mother does not have an opportunity for a nap in the early afternoon, but she sleeps well at night. She says her mother is very hungry at suppertime, and since the fall daylight savings time change, her behavior has become worse.

Together they devise these methods to help Jeanne deal with her mother’s behavior:

To avoid extreme fatigue, Jeanne has her mother take a one-hour nap at 1 p.m. but doesn’t allow her to sleep too long, since that may interfere with her sleep at night.
To help relieve Mrs. Perlman’s hunger and possible low glucose level, Jeanne gives her mother a high-carbohydrate snack at 4 p.m.
To maintain the same level of light in the house, Jeanne turns on all the lights two hours before sundown. She closes the curtains one hour before sundown so her mother might not notice the changing light level outside.
Jeanne attempts to engage her mother in a quiet activity immediately after supper.

Two months later, Jeanne reports back to the support group that, although her mother still has some increased confusion at nighttime, the frequency and degree of confusion and disruption has decreased significantly.

Perseveration and Compulsive Behaviors

Repetitious speech or actions are those that occur on a continuous basis and generally serve no functional purpose. Mostly, these behaviors are tolerable for caregivers, but they can also become very annoying and lead to a great deal of frustration. These behaviors are due to the disease process and not because the person is purposely trying to be annoying. They may include:

Checking locks, doors, or window coverings over and over
Having rigid walking patterns, including pacing
Collecting or hoarding items
Counting or organizing objects repeatedly
Going to the toilet frequently
Selective eating habits
Asking the same questions repeatedly

The caregiver can consider whether the person might have a need they are not able to express, such as boredom, hunger, insecurity, or need to use the toilet. Sometimes people engage in repetitive behavior because they are feeling anxious and the activity is soothing. It may be of benefit to see if there is a way to substitute the behavior with another activity, such as folding laundry, sweeping, or creative projects. Remove or hide objects in the environment that might trigger the behavior.

All behaviors have meaning. Repetitious activity often has a basis in the person’s past, such as work. A man who picks up the chairs, places them upside down onto a table, and wiggles their legs may be demonstrating a behavior required in his former work as a furniture maker or carpenter. A woman who worked in an office all her life may pace and exhibit restlessness. Simple measures such as dressing her in business attire and providing her with a small desk may prove to be a calming and reassuring activity. Other helpful measures to consider may include:

Providing plenty of reassurance and comfort in word and touch
Distracting with a snack or activity
Avoiding reminding the person that they just asked the same question
Ignoring the behavior or question, and instead refocusing the person into an activity such as singing or helping with a chore
Not discussing plans with a confused person until immediately prior to an event
Learning to recognize certain behaviors (e.g., an agitated state or pulling at clothing to indicate a need to use the bathroom)

When the person is very rigid and resistant to any interference with the activity, it is important to avoid provoking an aggressive reaction.

Use a calm, matter-of-fact tone of voice.
Do not become bossy or condescending.
Distract the person with something appealing to them.
(UCSF, 2021c; FCA, 2021b)

Shadowing is another repetitive behavior in which the person constantly follows their caregivers around. This behavior often occurs late in the day. They may imitate the caregiver or become anxious if the caregiver tries to spend any time away from them. For the caregiver, this can be a smothering experience. Even being able to use the bathroom alone can be a challenge. In Alzheimer’s patients, shadowing represents a message of uncertainty, insecurity, or fear. Caregivers represent security and protection. Helpful suggestions include:

Establishing and maintaining a daily routine to help the person feel more secure
Saying reassuring words every day and often, such as, “You’re safe.”
Avoiding moving household furnishings or other items around or rearranging them
Using a simple white board to indicate the date or to tell the person when the caregiver will return
Involving and engaging the person in familiar activities such as folding laundry or cleaning tasks
Playing the person’s favorite musical selections
Making an audiotape of the caregiver’s voice or any reassuring familiar voice
Making a videotape of recent events to play for the person, or playing familiar movies
Considering the use of a day center or hiring a professional caregiver
(Alzheimer’s Association, 2021b)

Inappropriate Sexual Behaviors

Because of dementia, many individuals lose the ability to determine the appropriate time, place, or way to express sexual needs. Inappropriate behaviors may become the only available mechanism for gratifying such needs. Acts of sexual disinhibition result from damage mainly in the frontal and temporal lobes of the brain, disrupting the person’s ability to control behaviors.

Such behaviors may include masturbation, undressing in public, making lewd remarks or unreasonable sexual demands, as well as sexual aggression, which may include fondling, exposing genitals, or attempting to engage in sex acts with people other than their partners. This behavior may be directed toward their own children, professional caregivers, or others because of the person’s inability to recognize the individual is not their partner.

Persons who masturbate in public places should be gently led from the public area to their room. Do not scold or try to get them to understand the inappropriateness of their behavior, as that will only increase their negative feelings and agitation.

If possible, identify what is triggering the behavior. Every attempt should be made to determine whether the person is suffering from pruritus, an infection, or a chronic stress condition. Assess behaviors for any antecedent events such as a visit from the family. If persons have truly problematic sexual behaviors such as touching visitors or staff persons intimately following a family visit, for instance, visitation should take place in the person’s room, and once the family leaves, the person should immediately be involved in some activity.

Undressing in public may be due to physical factors such as being too warm or frustration about trying to remember how to dress and undress. Specially designed clothing that closes in the back makes disrobing difficult in inappropriate settings.

Forewarn family and friends of the person’s behaviors to better prepare them with what to expect and how best to respond. Because of the embarrassment and negative feelings about these behaviors, family members, friends, and caregivers must be given an opportunity to talk about their feelings.

If the person is disruptive or making someone else uncomfortable, make eye contact and say, “Stop,” with a calm but firm tone of voice, and then distract with a different activity.

If it is thought that the person is seeking more physical affection or intimacy, consider pet therapy, a stuffed animal, and socially appropriate touching such as hand-holding, dancing, back rubs or massages, manicure/pedicure, or brushing/combing hair (UCSF, 2021c).