The onset of dementia and its gradual progression inevitably leads to changes in personality and behavior. Geriatrics specialists refer to these changes as behavioral and psychological symptoms of dementia (BPSD) or neuropsychiatric symptoms of dementia (NSP). It is estimated that up to 90% of patients will eventually experience challenging behaviors associated with their dementia (Passmore, 2013).
The prevalence of challenging behaviors increases demands on staff and causes job-related stress, burnout, and staff turnover. For these residents with dementia experiencing behavioral and psychological symptoms, the cost of their care is three times higher than that of other nursing home residents. About 30% of these costs are attributed to the management of disruptive behaviors (Ahn & Horgas, 2013).
Changes in personality and behavior can range from disinterest and apathy to agitation, disinhibition,* and restlessness. Behavioral interventions usually complement medication management and include creating a structured, safe, low-stress environment, promoting regular sleep and eating habits, minimizing unexpected changes, and employing redirection and distraction (DeFina et al., 2013).
*Disinhibition: a loss of inhibition, a lack of restraint, disregard for social convention, impulsiveness, poor safety awareness, an inability to stop strong responses, desires, or emotions.
In general, challenging behaviors are best managed through the use of multidisciplinary, individualized, and multifaceted care including psychosocial interventions and short-term pharmacologic treatment only when necessary (Burns et al., 2012). Prior to deciding on a course of action, a risk assessment, comprehensive assessment, and a determination of reversible cause or factors should be completed.
The Problem-Solving Approach
My mom has dementia and my sisters and I take turns staying with her at her home. We noticed that she gets really agitated and angry in the evening—we blamed this on her dementia. We finally figured out that she gets really cold in the evening—even when it’s warm outside. She doesn’t tell us when she’s cold but if we ask, she’ll say “I’m freezing.” Once we realized this, we ordered special heated slippers and also got her an electric blanket. It sounds simple but it took us a long time to figure it out because she doesn’t complain. Now she’s rarely agitated or angry in the evening!
Caregiver, Santa Rosa, California
The problem-solving approach encourages caregivers to look for the root cause of a behavior and treat it—usually with environmental modification, medication management, and caregiver training. The problem-solving approach allows caregivers and healthcare workers to identify critical points for intervention based on observing the antecedent, behavior, and consequence (A, B, C) of a challenging behavior.
- Antecedent—what precipitated or caused the behavior?
- Behavior—what is the behavior?
- Consequence—what are the consequences of the behavior?
The ABC approach is particularly effective when successful strategies are regularly shared by staff, caregivers, and family members and used to uncover the cause of a challenging behavior. The ABC method helps staff and caregivers understand when and how often a behavior occurs and offers the opportunity for discussion and planning.
Among many challenging behaviors associated with Alzheimer’s disease and related dementias, three stand out in the current literature: aggressive behaviors, agitated behaviors, and wandering. Other challenging behaviors will arise, especially in the later stages. Rummaging and hoarding, delusions and hallucinations (psychoses), and sleep disturbances will be discussed here. This is by no means an exhaustive list and other challenging behaviors are sure to arise.
Agitation and Aggression
The terms agitation and aggression are often used in reference to behavioral symptoms associated with dementia. Agitation refers to observable, non-specific, restless behaviors that are excessive, inappropriate, and repetitive. This can include verbal, vocal, or motor activity (Burns et al., 2012).
Aggression is characterized by physically or verbally threatening behaviors directed at people, objects, or self. Aggressive behaviors are generally perceived as a threat to the safety of those with dementia and to those around them, which includes family caregivers, staff, and other residents. Aggression is often described by specific acts and includes:
- Verbal insults
- Shouting, screaming
- Obscene language
- Hitting, punching, kicking
- Pushing, throwing objects
- Sexual aggression (Burns et al., 2012)
Agitation and aggression occur in about 50% to 80% of nursing home residents with cognitive impairments (Ahn & Horgas, 2013). Men are more likely than women to engage in overtly aggressive behaviors. Cognitively impaired people are more likely to engage in non-aggressive physical behaviors (such as pacing). Functionally impaired people are more likely to engage in verbally agitated behaviors (complaining, vocal outbursts) (Pelletier & Landreville, 2007).
Causes of Agitation and Aggression
Agitated and aggressive behaviors almost always result from loss of control, discomfort, or fear and are common ways to communicate discomfort (Pelletier & Landreville, 2007). Agitation and aggression can be a response to a violation of personal space or a perceived threat. These behaviors often occur during personal care tasks involving close caregiver-resident contact (Burns et al., 2012).
Aggression may be related to a decrease in the activity of serotonin or reduced transmission of acetylcholine in the brain. Frontal lobe dysfunction has been implicated. Aggression may also be related to underlying depression or psychotic symptoms (Burns et al., 2012).
Pain severity is positively associated with the frequency of agitated and aggressive behaviors. Nursing home residents with more severe pain are more likely to display these behaviors (Ahn & Horgas, 2013).
Management of Agitation and Aggression
To understand and prevent agitation and aggression, consider the antecedent: What precipitated the behavior? Carefully observe the person and try to determine the cause of the agitation. Look for patterns. You can use one of the following scales to assess aggressive behaviors:
- Rating scale for Aggressive behavior in the Elderly (RAGE)
- Overt Aggression Scale (OAS)
- The physically aggressive subscale of the Cohen-Mansfield Agitation Inventory (CMAI)
- Agitation/aggression subscale of the Neuropsychiatric Inventory (NPI)
- Aggression subscale of the NPI-Clinician (Burns et al., 2012)
For agitated behaviors a number of instruments can be used to assess the different aspects of agitation:
- Cohen-Mansfield Agitation Inventory
- Pittsburgh Agitation Scale
- Agitation/aggression and aberrant motor behavior subscales of the Neuropsychiatric Inventory
- Brief Agitation Rating Scale (Burns et al., 2012)
Psychosocial and environmental interventions can be of help in reducing or eliminating agitated or aggressive behaviors. Touch and music therapy, massage, craniosacral therapy,* therapeutic touch, acupressure, and tactile massage have been shown to be successful for treating aggression. In addition, individual behavioral therapy, bright light therapy, and Montessori activities, and individualized, person-centered care based on psychosocial management is recommended (Burns et al., 2012)
*Craniosacral therapy: a hands-on technique that uses soft touch to release restrictions in the soft tissue surrounding the central nervous system.
For people with dementia, antipsychotics may reduce aggression and psychosis, particularly among those most severely agitated. However, in older people, antipsychotics are associated with increased overall mortality, worsening cognitive impairment, hip fracture, diabetes, and stroke (Jordan et al., 2014).
Wandering is repetitive locomotion that makes one susceptible to harm due to its incongruence with boundaries and obstacles, which may culminate in exiting, elopement,* or becoming lost (Burns et al., 2012). It is a broad term encompassing a diverse set of behaviors. It can include aimless locomotion with a repetitive pattern, hyperactivity, and excessive walking, as well as leaving a safe environment and becoming lost alone in the community (Rowe et al., 2011).
*Elopement: When a patient or resident who is cognitively, physically, mentally, emotionally, or chemically impaired wanders away, walks away, runs away, escapes, or otherwise leaves a caregiving facility or environment unsupervised, unnoticed, or prior to their scheduled discharge (The National Institute for Elopement Prevention and Resolution).
Wandering can be goal-directed, in which a person tries to reach an unobtainable goal, or nongoal-directed, in which a person wanders aimlessly. Wandering patterns can include moving to a specific location, lapping or circling along a path or track, pacing back and forth, or wandering at random.
The Alzheimer’s Association estimates that up to 60% of persons with dementia will “wander” into the community at some point during the course of their disease (Rowe et al., 2011). In nursing homes, wandering occurs in approximately 40% to 60% of residents with dementia (Ahn & Horgas, 2013).
Causes of Wandering
Those with Alzheimer’s disease are more likely to wander than those diagnosed with other types of dementias. Wandering is reportedly more prevalent in men and in younger persons with dementia. Those with frontal-temporal dementia reportedly have a greater tendency to pacing and lapping behaviors whereas those with AD are more inclined to engage in random locomotion. Wandering in the form of restlessness, with a compelling need for movement or pacing, has been linked to side effects of psychotropic medications, particularly antipsychotics (Burns et al., 2012).
Wandering is likely related to boredom, pain and discomfort, disorientation, and memory problems. People may wander out of habit or because they think something from their past needs to be done, such as going home after work, walking the dog, getting exercise, or searching for something they think they have lost.
A person’s pre-dementia lifestyle may be a factor in whether they are likely to wander. Studies have indicated that people with the following characteristics are more likely than others to wander:
- Those with an active physical and mental interest in music
- Those who have an extroverted personality showing warmth, positive emotion, altruism
- Those who were very involved with social activities and were active in social-seeking behaviors
- Those who were physically active
- Those who experienced stressful events throughout their life, necessitating multiple readjustments
- Those who respond to stress by engaging in motor activities (Futrell et al., 2010)
Management of Wandering
Wandering can be a beneficial activity if there are safe places to wander, in and around a facility. An assessment of the reasons for wandering should include regular review medications to make sure wandering is not the result of medication side effects, overmedicating, or drug interactions. The most important goal is to prevent a person from wandering into unsafe areas, other resident’s rooms, or eloping from the facility. Wandering can be addressed by:
- Redirecting to a purposeful activity
- Providing safe, looping wandering paths with interesting rest areas
- Providing regular exercise
- Engaging the person in simple chores such as folding laundry or assisting with dinner
- Reducing excessive noise levels
- Avoiding medications that increase fall risk
- Putting up visual barriers on exit doors such as “Stop” signs
- Using electronic devices attached to the person’s ankle or wrist that alert staff or family when someone has wandered out of a designated area
- Installing alarms on entryways into unsafe areas or to the outside
- Putting up physical barriers such as yellow tape to prevent wandering into unsupervised areas
Subjective barriers such as grid patterns on the floor in front of exit doors, camouflage, and concealment of doors and doorknobs have been shown to discourage a wanderer from exiting a building.
Did You Know. . .
The Alzheimer’s Association has partnered with MedicAlert through the Alzheimer’s Association Safe Return Program to provide 24-hour assistance for those who wander. They maintain an emergency response line and immediately activate local chapters and local law enforcement to assist with the search for someone who has wandered off. The program includes an ID bracelet and a medical alert necklace. For more information call 800 625 3780 or visit the Alzheimer’s Association website (Alz.org).
Rummaging and Hoarding
Rummaging and hoarding refer to behaviors in which a person gathers, hides, or puts away items in a secretive and guarded manner. These actions are considered a type of obsessive-compulsive behavior. Rummaging and hoarding are not necessarily dangerous or unsafe but they can be frustrating for caregivers and other residents.
Causes of Rummaging and Hoarding
Hoarding can arise in those with dementia due to fear of losing money or possessions, due to lack of control, need to “save for a rainy day, or simply out of confusion. Hoarding is associated with insecurity and anger and may be an attempt to hold onto possessions and memories from the past.
Cognitive changes such as memory loss, poor judgment, and confusion can contribute to the impulse to rummage and hoard. People may rummage out of boredom or to find something they think has been misplaced. They may have a fear of being robbed or feel a need to protect their own possessions. Rummaging through familiar items may create a sense of safety and security. Confusion can lead to rummaging through another person’s belongings, which can be particularly frustrating for neighboring residents.
Management of Rummaging and Hoarding
To address rummaging and hoarding behaviors, try to determine what triggers or causes the behavior and look at the consequences, if any. Put yourself in the other person’s head—the reason for rummaging and hoarding may not be clear to you but there may be a perfectly good reason why someone with dementia is rummaging.
Rummaging through another person’s belongings can be prevented by installing locks on drawers and closets. The rummaging impulse might be satisfied by creating a rummaging room or a bag or drawer of items that the person can pick through. Restricting all rummaging and hoarding can be frustrating for a person who enjoys these activities.
In a home setting (and even in a healthcare setting), place important items such as credit cards or keys out of reach or in a locked cabinet. Consider having mail delivered to a post office box and check wastepaper baskets before disposing of trash. Other recommendations:
- Look for patterns
- Get rid of poisonous items such as caustic liquids and poisonous plants
- Label cabinets, doors, and closets (with words or pictures) to help the person find what they are looking for
- Reduce clutter
- Observe carefully to learn the person’s hiding places
- Check garbage for missing items
Psychosis is a disturbance in the perception or appreciation of objective reality (Burns et al., 2012). Symptoms can include delusions and hallucinations, among others. A delusion is a false idea or belief or a misinterpretation of a situation. Hallucinations are sensory events in which a person hears, tastes, smells, sees, or feels something that is not there. Delusions and hallucinations can occur in people with dementia, with hallucinations particularly common in those with Parkinson’s disease dementia and Lewy body dementia.
Causes of Psychosis
Delusions and hallucinations can be caused by health factors such as urinary tract infections or environmental factors such as poor lighting or sensory overload. Changes in the brain can also contribute to these behaviors, especially changes related to sensory awareness, memory, and decreased ability to communicate or be understood.
People suffering from delusions and paranoia can become suspicious of caregivers or friends; they may feel these people are stealing from them or planning them harm. Sensory deficits can contribute to delusions, and particularly hallucinations, because of the distortion of sound or sight.
Visual hallucinations can occur in the moderate to severe stages of dementia and are particularly common in those with Lewy body dementia. While atypical antipsychotics are sometimes used off-label to manage hallucinations, in a person with Lewy body dementia, antipsychotic medications can make hallucinations worse. In a person with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, all medications the person is receiving should be carefully reviewed. This includes prescription and over-the-counter medications, as well as herbal supplements.
Management of Psychosis
The first step in the management of delusions and hallucinations is to rule out delirium as a cause. Another important factor is to determine if the claims by the person with dementia actually did occur (Burns et al., 2012).
Observe the behavior and listen to what the person experiencing the paranoia or delusion has to say. Is the feeling pleasant or frightening? If the hallucination elicits a fearful or negative response, address the person’s need to regain comfort. For example, you may ask “What will make you feel safe or comfortable?”
When communicating with someone who is expressing paranoia or delusions, realize that even if their complaint is not true, it is very real for that person. It is best not to argue; simply explaining the truth of the situation will not work. Do not agree with the person or further validate the paranoia or delusion, but respond to the person’s emotion.
To manage hallucinations, the first step is to decrease auditory and visual stimuli. The second step is to have the person evaluated for visual or hearing impairment. Delusions and hallucinations can be addressed using behavioral interventions or, in some cases, antipsychotic medication. Atypical antipsychotics have largely replaced typical or traditional antipsychotics as the main treatment for psychosis, hallucinations, and delusions in those with dementia (Burns et al., 2012).
Here are some other suggestions for addressing hallucinations:
- Reduce stimulation in the environment—minimize violent or noisy TV, remove wall hangings, reduce noise, play relaxing music
- Cover mirrors
- Reduce glare from windows
- Ensure adequate lighting
Sleep disturbances are very common among older adults and are of particular concern in people with dementia. Sleep disturbances probably contribute to the onset and severity of some behavioral problems, particularly anxiety, increased confusion, wandering, and sundowning.*
*Sundowning: increased confusion and restlessness in the late afternoon and early evening, possibly due to damage to the part of the brain that regulates sleep patterns.
The symptoms of sleep disruption vary according to the type of dementia and may present with the following features:
- Increased sleep latency
- Nocturnal sleep fragmentation
- Increased early-morning awakenings
- Decreased total sleep time
- Decreased sleep efficiency
- Decreased slow-wave and rapid-eye-movement (rem) sleep
- Nocturnal confusion
- Increased daytime napping and excessive daytime sleepiness
- Other behavioral and psychological symptoms such as agitation, verbally disruptive behaviors, hallucinations, and nighttime wandering (Burns et al., 2012)
Causes of Sleep Disturbances
Studies have suggested that approximately one-quarter to one-third of those with Alzheimer’s disease have problems with sleep, partly due to the degeneration of neurons in the part of the brain that controls circadian rhythms. Sleep apnea, restless leg syndrome, medical and psychiatric issues, and environmental and behavioral factors often predate the onset of dementia. Chronic pain also interferes with sleep and disturbed sleep reduces the pain threshold (Deschenes & McCurry, 2009).
Medications used to treat the psychological and behavioral symptoms of dementia, as well as those used to slow the progression of dementia, can negatively affect daytime alertness and can cause sleep disturbances. Short-term sleep disturbances in people with dementia are often treated with antidepressants, benzodiazepines, or non-benzodiazepines. There is limited evidence to support their long-term safety in cognitively impaired older adults (Deschenes & McCurry, 2009).
Management of Sleep Disturbances
Before treating sleep disturbances look for potentially treatable causes, which can include pain, hunger and thirst, the need to urinate, infections, adverse drug reactions, and even noise. Some nonpharmacologic treatments that have been used successfully in nursing homes to treat sleep disorders include:
- Light therapy
- High-intensity or ambient light in morning or evening
- Full-spectrum light box
- Melatonin with light therapy
- Bright light exposure during the day
- Good sleep hygiene practices
- Get up at the same time every morning and go to bed at the same time every night
- Turn on music or radio at bedtime
- Provide a comfortable and warm bed
- Empty bladder before bedtime
- Limit daytime napping
- Exercise during the day
- Individualized social activities
- Restriction or elimination of caffeine, nicotine, and alcohol
- Calm atmosphere
- Biofeedback (Deschenes & McCurry, 2009)
Mrs. Winkler has moderate dementia. A nursing assistant wheels her to the activities room and leaves her there. After about 20 minutes, Mrs. Winkler decides to leave the activities room. She heads down the hall and is stopped several times by a passing staff member, all of whom turn her back toward the activities room—usually with a reprimand.
As soon as the staff member is gone, Mrs. Winkler turns around and continues down the hall. She stops near the elevator, where she sits for a while watching people come and go. Several staff members pass her and admonish her not to get on the elevator. Each time she is left in exactly the same place next to the elevator. Finally, when no one is looking Mrs. Winkler wheels into the elevator. The door closes and the elevator takes off for the ground floor.
Antecedent: Mrs. Winkler is a curious person and always liked walking around the city for exercise. She liked exploring the different neighborhoods. She was never one to sit around doing nothing. Mrs. Winkler can propel herself independently in the wheelchair but is no longer able to think logically or understand the consequences of her decisions. The elevator is interesting and looks like fun. People keep walking by and talking to her but she doesn’t understand or remember what they are saying.
Behavior: The door to the elevator is an interesting visual cue and Mrs. Winkler enjoys seeing people coming and going. When a door opens, it is a common reaction to pass through it. The opening door cues Mrs. Winkler to wheel into the elevator. When the door opens on the ground floor, she wheels herself out of the elevator without knowing where it leads. Her behavior is consistent with her personality and her previous habits.
Consequence: Once she gets into the elevator, Mrs. Winkler’s inability to think logically puts her at great risk. If she were to exit the elevator next to a door that leads out of the building, she could wander into the street. People who are not familiar with her may not know she has dementia and is unable to exercise good judgment.
Discussion: Mrs. Winkler cannot understand the danger and does not remember the warnings to stay out of the elevator. The solution is to alter the environment. Move Mrs. Winkler to a place where she cannot see or hear the elevator. Try to determine the reason for her wandering. Review medications to make sure wandering is not the result of medication side effects, overmedicating, or drug interactions. People probably wander out of habit and because they are restless, bored, or, disoriented. Use these suggestions to keep Mrs. Winkler out of the elevator:
- Redirect her to a purposeful activity
- Provide a place where she can wander safely
- Provide her with regular exercise
- Engage her in simple, meaningful chores
- Review her medications
- Attach an electronic device to Mrs. Winkler’s ankle or wrist that alerts caregivers when she has wandered out of a designated area
- Paint a grid in front of the elevator to discourage her getting into the elevator
- Place a plastic PVC pole on the back of her wheelchair and a horizontal pole across the entrance to the elevator so that she is physically stopped from entering the elevator
- Encourage a family member to take her for a stroll outside the building or for a ride in a car