The Alzheimer’s Caregiver®

Difficult Behaviors Associated with Dementia

Welcome to the educational program Difficult Behaviors Associated with Dementia. This program will discuss various types of difficult behaviors often associated with dementia, the causes for these behaviors, and some strategies for managing them.

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This is Lesson 16 of The Alzheimer’s Caregiver. You may view the topics in order as presented, or click on any topic listed in the main menu to be taken to that section.

We hope that you enjoy this program and find it useful in helping both yourself and those you care for. There are no easy answers when it comes to the care of another, as every situation and person is different. In addition, every caregiver comes with different experiences, skills, and attitudes about caregiving. Our hope is to offer you useful information and guidelines for caring for someone with dementia, but these guidelines will need to be adjusted to suit your own individual needs. Remember that your life experiences, your compassion and your inventiveness will go a long way toward enabling you to provide quality care.

Let’s get started.

Types of Difficult Behavior

Difficult behaviors can be categorized as verbally nonaggressive, verbally aggressive, physically nonaggressive, and physically aggressive.

Examples of verbally nonaggressive behaviors include complaining, negativism, repetitive questions, and constant requests for help. Verbally aggressive behaviors include cursing, making distressed noises, verbal sexual advances, and screaming. Examples of physically nonaggressive behaviors are disrobing, eating inappropriate things, handling or moving items, wandering, hoarding, and hiding. Lastly, and perhaps most concerning, are physically aggressive behaviors such as physical sexual advances, hurting self or others, throwing items, grabbing, pushing, hitting, spitting, kicking, and biting.

When a difficult behavior occurs, caregivers should ask themselves a key question: “Is there a need or reason that explains the behavior even if not apparent to the observer?” An important concept is that all behavior has meaning, and it is the caregiver’s responsibility to figure out that meaning. What is the person trying to communicate with the behavior? Possible needs and reasons include pain, distress, fatigue, thirst, hunger, toileting needs, constipation, fever, medication issue, and infection or other medical issue. The caregiver should try to address these needs before difficult behaviors occur or before difficult behaviors escalate.

Another important concept is that the person is not intentionally being difficult. It is the disease, not the person, causing the behavior. The behavior may be the only way that the person knows of communicating feelings, needs, or wants. The person may not appreciate that the behavior is inappropriate and may need a gentle reminder about what is acceptable behavior. But do not blame or reproach the person for the behavior. The challenge is to find out what triggered the behavior and to intervene accordingly.

Difficult Behaviors

Behavioral and Psychological Symptoms of Dementia, or BPSD, is a term used to describe a generalized range of psychological reactions and psychiatric symptoms and behaviors that often occur in people with dementia. Remember that there are different types of dementia, so there will be different types of corresponding symptoms and behaviors. Alzheimer’s disease and vascular dementia often affect people’s behavior similarly, while fronto-temporal dementia, or Pick’s disease, and Lewy body disease cause behavior symptoms earlier in the disease course and are more obvious in their presentations.

One of the main impacts of BPSD is the overall rise of stress within the family unit. Behavior problems are the main reason for deciding to place a loved one in a care facility, and this can affect the family’s economics by causing an increase in cost for care.

Behavior problems also affect the quality of life and ultimately, the mortality of the person with dementia. Another impact of difficult behaviors is that they can be very concerning and sometimes distressing to caregivers, causing anxiety, disrupting sleep, and increasing stress levels, which can lead to health issues and even care recipient abuse.

Difficult Behaviors (Continued)

As you know, there are many things to know and learn about caring for people with Alzheimer’s disease. Knowing the person you care for and understanding what happens to the brain as the disease progresses will help you to realize why certain behaviors are occurring. There are many difficult and challenging behaviors observed in those with dementia, which for the most part, occur because they are frustrated, frightened or distressed.

People with dementia gradually lose their verbal communication skills, so caregivers must learn to read non-verbal messages to determine what may have caused the frustration, fear, or distress.

Though most difficult behaviors are only annoying or embarrassing, some may be severe and prolonged. In many cases, a combination of pharmacological and non-pharmacological approaches is most effective for managing difficult behaviors. A healthcare professional should be consulted if considering medications for managing difficult behaviors and reducing a person’s level of anxiety. In all cases, non-pharmacological approaches should be attempted.

Case Study 1

Let’s look at a situation between Mary and her husband Robert, who was diagnosed with Alzheimer’s disease about 18 months ago. Robert has recently had to retire from his job of 40 years.

What could be causing Robert’s behavior?

A. There is too much noise in the room.
B. Robert thinks that he needs to go to work.
C. Robert is in pain.
D. All of the above.

Case Study 1 Answers:

Choice A: “There is too much noise in the room” is a possibility.

People with dementia need mental and social stimulation, though the difference between the right amount of stimulation and too much can be very small. Whether it be a television, music, people chattering, pans clanging, or loud speakers blaring, different sounds can cause over-stimulation, which can cause stress.

Some people may be able to tune out the noise, but others may become stressed and agitated. In dementia, the ability to tolerate stress, or stress threshold, declines as the disease advances, and stress can become distress. People may react by wandering and pacing, yelling, or lashing out at others.

Choice B: “Robert thinks that he needs to go to work” is another possibility.

People with dementia are usually in their late 60s and 70s and have spent a lifetime working and keeping a schedule with responsibilities and demands, whether for a paid job or as a homemaker. People have a need to feel useful and responsible for a task or duty. This need for occupation may involve any activity that is meaningful to the person, such as cooking a meal, giving a lecture, balancing a bank account, or driving a truck. The routine of daily activities and demands are deeply ingrained in people and are not easily lost. Although the person may no longer be able to perform the task or job, the impulse to do it can remain. Individuals may not be able to say or even know what it is they feel the need to do, but there may be a strong urge to be somewhere or do something. This urge leads to what is called agenda behavior.

Choice C: “Robert is in pain” is another possibility.

Because people with dementia have difficulty expressing their needs, they may not be able to tell anyone that they are experiencing pain or where the pain is. Instead, the person may wander, become agitated, or display some other difficult behavior.

If someone’s behavior suddenly changes or the person’s level of functioning deteriorates significantly, a healthcare professional should evaluate the person to see if there are any medical issues that need attention.

Choice D: Because all of these choices are possible reasons for Robert’s behavior, the best answer is D, “all of the above.”

Common Difficult Behaviors

Common difficult behaviors seen with Alzheimer’s disease include wandering, pacing, rummaging, protective, and catastrophic or explosive reactions. These behaviors may reflect different manifestations of agitation. Physical and verbal aggression are serious concerns because of their impact on the caregiver and others as well. There are many possible causes of agitation, including environmental stressors, interpersonal relationships, physical discomfort, medications, unmet needs, and misinterpretation of the environment, which all lead to fear and frustration. If not controlled, agitation and aggression are common reasons for placing loved ones in care facilities.

Let’s discuss each of the common difficult behaviors in more detail.

Wandering

Wandering occurs more often during the middle stages of Alzheimer’s disease than in the other stages. Affected individuals may no longer recognize the rooms and objects around them, or they may need or want something that is elusive. They may be looking for someone or something. It may be their way of showing that they are in pain or discomfort, or need to use the toilet. Or they may feel an uneasiness, restlessness, or confusion, which can lead to anxiety. Wandering often turns into pacing if these needs are not somehow met.

Sometimes the wandering can be simply for the experience of movement, as it feels good to be moving. If wandering is in a controlled environment and does not appear to be associated with distress, it can actually be a good form of exercise, which is healthy for the body and mind. In such cases, the best intervention is to allow the wandering and adapt the environment to accommodate it.

Adaptations to the home, yard, or common areas can be made to make wandering more enjoyable and safe, such as removing obstacles, providing points of interest such as a garden with flowers, and setting up places for resting, such as a shaded bench along an outdoor path. For more information about modifying environments, see the LightBridge library of educational products.

Hazards of wandering include getting lost, falling down and getting injured. Persons with dementia have been found wandering far from their homes and in great danger from street traffic, adverse weather and dangerous neighborhoods. To learn more about strategies for preventing and managing wandering, please see the LightBridge educational programs.

If wandering away from home is an issue, consider enrolling the person in the Alzheimer’s Association’s Safe Return Program or placing a locating device on the person, such as a GPS, RFID, or cellular locator. Another option to consider is a wanderer alert system, which sets off an alarm if a person wearing the transmitter wanders away from the base unit.

Pacing

Pacing is when individuals rapidly walk back and forth and their behavior clearly reflects distress, fear or anxiety. They are often tense in their face and body language, and may scratch or wring their hands. If interrupted or interfered with, they may react with aggression.

One approach to managing this behavior is to spend time with the person to find out what is causing the distress, fear, or anxiety. Walk alongside the person, smile, and show interest. Try to find out what is bothering them with simple questions and observing body language.

Another approach is to offer a distraction, such as an activity that the person enjoys doing, a favorite object, or a snack.

In some cases, medication may be needed to reduce the anxiety.

Rummaging

Rummaging is a general term that refers to searching through drawers or closets for something. Individuals may handle items by picking them up and then putting them down. They may also rearrange things, or take things that don’t belong to them. Another rummaging behavior includes hoarding things such as food, candy, coins, napkins, or pencils. This behavior arises from the fear of losing things. When one’s memory is impaired, particularly short-term memory, putting articles down and remembering where one placed them becomes difficult.

Unfamiliar environments and unfamiliar people tend to create suspiciousness and fear. People with dementia often hide items and then forget where they placed them. This can easily lead to frustration, then agitation and stress.

Because of their short attention span, individuals with dementia can be easily distracted from the frustrating experience of rummaging. Helpful interventions include offering to help find the item, asking them to tell you about the item and then transitioning to another subject, or distracting them with a different item or a pleasant activity.

In a care facility, items may be missing because other residents accidentally picked them up thinking the items were theirs or simply because they wanted them. For this reason, individuals that are placed in care facilities need to have their valuables kept at home or replaced with inexpensive duplicates.

Protective Behaviors

People with Alzheimer’s disease may not accurately perceive things in their environment or their situation. This can result in a fear of harm from people or their surroundings. A natural reaction to fear of harm is to protect oneself from it using protective behaviors. People with Alzheimer’s will often use more primitive methods of fighting for defense, such as kicking, hitting, biting or scratching. This falling back to primitive behaviors is called reverse development, which means that the individual loses the mature interpersonal skills in the reverse order that they were gained. The same is true of verbal aggression, as people with Alzheimer’s often use name-calling, as they did when they were children.

When dealing with individuals exhibiting these behaviors, caregivers first and foremost need to provide reassurance using a calm tone of voice that they are safe and that no one will hurt them. Personal space and body language are also very important. Caregivers should use a non-threatening stance with open arms and avoid touching the person as it may be perceived as a threat. Try to redirect the individual to an idea or an image that is familiar and pleasant. If there is an object or a person in the area that may have caused the negative reaction, it should be promptly removed.

Catastrophic Reaction

Catastrophic reaction is a term used to describe an exaggerated response such as screaming, hitting and throwing things, to an event that is quite ordinary. This often happens when the person’s stress threshold has been breached. All people experience stress, and most people know what their tolerance for stress is and when their stress limit has been reached. This is referred to as their stress threshold. Sometimes people with dementia experience stress that escalates to a point where they are unable to control their emotions, and a catastrophic reaction occurs. The reaction may seem quite unexpected, as the exaggerated response seems unreasonable with respect to an isolated incident. But keep in mind that people with dementia typically have low stress thresholds and may have already built up a high level of underlying stress. In such cases, a small incident may push them over to a catastrophic reaction.

Catastrophic behaviors cannot always be anticipated or prevented, but watching for non-verbal messages and anxious behavior can alert the caregiver that the person’s stress threshold is approaching. If this is the case, try adapting an activity to the level of current stress by simplifying it, shortening it, or slowing it’s pace. If a particular activity, object, or person is causing too much stress, then remove that stressor, or take the individual away from that situation to a quiet, calming environment. Try offering a relaxing activity to distract and calm the person. For example, offer a rest period in bed or a favorite chair. Try playing their favorite music. Music therapy has been shown to be effective for managing difficult behaviors. Consider offering a snack of fruit or whole wheat toast, which can help to reduce stress. Other approaches include modifying potential environmental stressors, such as reducing clutter and noise.

Click here to learn more about Progressively Lowered Stress Threshold (PLST).

Causes of Behavior Changes

Many factors contribute to the behavior changes associated with dementia. These include the dementia itself, the normal changes of aging, medical conditions, and stress from the environment, which includes the expectations of family or staff in task performance. Some researchers believe that some people with dementia may have already exhibited difficult behaviors prior to the onset of Alzheimer’s disease and that these behaviors become exaggerated with the development of dementia. This is referred to as the person’s pre-morbid personality.

Dementia

Dementia affects a person’s motivation, judgment and social behaviors. Damage to the frontal lobe results in poor decision making and a loss of control over impulses. People learn to control their impulses during childhood, and this knowledge is stored and monitored by the frontal lobe. As dementia progresses, these important skills are generally lost in the reverse order that they were learned. Loss of control over impulses often results in acting out behavior that is typical of children or adolescents. As dementia progresses, individuals becomes less and less able to master their environment and the tasks of daily living, often resulting in frustration, which leads to stress. Increasing frustration coupled with this loss of control can result in inappropriate outbursts and aggression.

Furthermore, as the disease progresses, the person’s tolerance for stress declines. The person is often not aware of the increasing stress or of ways to cope with it, so instead react in more primitive ways, such as by lashing out. Wandering, pacing, restlessness and combativeness are also related to stress.

The caregiver’s job is to look for signs that people are approaching their stress threshold. These signs include restlessness and pacing, tense facial expressions, irritability, calling out, and scratching or hand wringing. When people near their stress threshold, caregivers can try to help relieve the stress through exercise, taking a break, or relaxing activities. Understanding the problem of stress and carefully observing people for signs of increasing stress can go a long way towards preventing behavior outbursts and catastrophic reactions.

Click here to learn more about Progressively Lowered Stress Threshold (PLST).

Aging & Medical Factors

Frustration and anger can also be caused by normal aging changes, which causes a general loss of abilities. Aging can reduce a person’s mobility, independence, hearing, vision, and time and space orientation. These changes can lead to frustration, anger and even rage.

Medical factors that affect behavior include acute and chronic illness such as heart and vessel disease, lung disease, thyroid conditions, dehydration, constipation, depression, anxiety disorders, and sleep disorders, pain and discomfort, and medications. Medical issues not only affect behavior, but can also limit or reduce a person’s level of functioning. Therefore it is important to treat and control medical issues as much as possible with the help of healthcare professionals.

Environmental Factors

Environmental factors that can play a part in problematic behaviors include unfamiliar or new surroundings and anything that can cause sensory overload or deprivation, such as bright or clashing colors, cold or hot temperatures, loud noises, and mirrors. Physical environments should therefore be designed for comfort with soothing colors and contrasts, minimal background noise and loud noises, familiar and comforting objects, and set at a comfortable temperature.

Human environmental factors can also affect behavior. These include the general approach, attitude and mood of the caregiver, family members or staff. Members of the care team should try to present a pleasant, relaxed attitude and mood. Unfamiliar caregivers and disruptions in the caregiver’s schedule, for example, due to changes in shifts or vacation time, can also cause behavior changes. So keeping familiar routines with familiar people is important for minimizing stress. Some people with dementia may also have fears or prejudices about caregivers that may lead to negative behaviors. Therefore factors such as gender and ethnicity may need to be taken into consideration.

Also keep in mind that any task or activity in itself has an effect on people. New tasks or tasks that are being done differently can be stressful to people with dementia. For example, a person who is used to having a shower may be stressed about having a bath. A person may also become frustrated if there are too many choices. Lastly, tasks that are too complex, too fast, or require too much movement may be stressful. Therefore activities and tasks should be familiar and simplified to match the person’s level of abilities.

Summary

In summary, difficult behaviors are the main reason families place loved ones in care facilities. Difficult behaviors are often manifestations of agitation and fear. Common difficult behaviors include wandering, pacing, rummaging, protective reactions, and catastrophic reactions. These behaviors can be caused by environmental stressors, such as noise, the human environment, an unmet need for occupation, inaccurate perceptions of people and the environment, aging factors, medical issues, and lowered stress thresholds. One way to prevent difficult behaviors is to carefully observe the person for signs of stress and relieve the stress with simple, pleasant activities, relaxation, or rest, and adapt activities and environments to prevent further stress. Activities should be familiar and modified to match the person’s level of abilities. Environments should be comfortable, relaxed and pleasant. Known triggers should be left out of the environment if possible. Medical issues should be managed as much as possible to maximize comfort and functioning. Needs or wants should be anticipated and addressed before they lead to frustration or distress.

If a difficult behavior does occur, caregivers should provide reassurance using a calm tone of voice and body language. Strategies for managing difficult behaviors include addressing any unmet needs or wants, redirecting to a topic that is familiar and pleasant, distracting with a simple, pleasant activity, removing the trigger that may have caused the negative reaction, or removing the person from the situation, and playing calming music. All strategies should be individualized to the person and the situation.

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