Behavioral changes in people with dementia are generally called behavioral and psychological symptoms of dementia (BPSD). Anyone who has worked with someone with dementia is familiar with at least some of the difficult behaviors associated with dementia. Some behaviors are associated with brain changes while others are caused by frustration, loss of control, discomfort, pain, and the inability to communicate needs. Some are caused by poorly trained caregivers and healthcare providers.
There is no doubt that the caring for a person exhibiting a challenging behavior puts a great deal of stress on caregivers. Whether caring for someone at home, in adult day care, in a nursing home, or in hospice, difficult behaviors are emotionally and financially costly. In nursing homes, where up to 97% of residents with dementia experience at least one behavioral symptom of dementia (Scales et al., 2018), the cost of care is three times higher than that of other nursing home residents (Ahn & Horgas, 2013).
Understanding The Root Cause of Difficult Behaviors
Often behavioral symptoms of dementia can be addressed with proper staff training, environmental modifications, pet therapy, social engagement, and good communication. Unfortunately, there is strong evidence that much of the frustration that people with dementia experience is due to negative environmental influences, including staff attitudes, behaviors, and care practices.
One common-sense approach—the problem-solving approach—addresses challenging behaviors by looking for the root cause of a behavior. This approach encourages caregivers to get in the habit of observing the antecedent, behavior, and consequence (A, B, C) of a challenging behavior.
- Antecedent—what caused the behavior?
- Behavior—what is the behavior?
- Consequence—what are the consequences of the behavior?
The problem-solving approach is very effective when insights are shared by staff, caregivers, and family members. This helps caregivers understand when (and how often) a behavior occurs and offers caregivers the opportunity for discussion and planning. To be successful, interventions and training must occur at the individual and group level, as well as at the levels of management and organization.
Common Challenging Behaviors
When considering the most common challenging behaviors seen in a person with dementia, several stand out: agitation and aggression, rummaging and hoarding, delusions and hallucinations, and sleep disturbances. Behaviors will typically change as dementia progresses although a person-centered, individual approach to management is always recommended, no matter what a person’s level of cognitive change.
Agitation and Aggression
Agitation occurs in over 40% of care home residents, 75% of older hospital patients with dementia, and as many as half of people with severe dementia. It is broadly defined as restlessness, pacing, shouting, and verbal or physical aggression. Agitation is complex, with a range of biological, psychological, and social causes. It may be a direct result of loss of cells in the area of the brain that controls behavior or an expression of pain or thirst, difficulties with communication, discomfort, and emotional distress (Sampson et al., 2019).
Sometimes agitation can result in aggression, which can be difficult, harmful, and exhausting for patients and caregivers. The impact on nursing and other healthcare providers can include burnout, sick leave, turnover, and increased economic costs. Because many people with dementia live in skilled nursing facilities, assisted living, or are seen in acute care hospitals, it is crucial to explore how staff in these settings understand and respond to agitation, particularly near the end of life (Sampson et al., 2019).
Depending on the type and severity of a person’s cognitive changes, agitated and aggressive behaviors may become more pronounced as the dementia progresses. Agitated and aggressive behaviors often occur during personal care tasks involving close contact and may be related to a perceived threat or violation of personal space. In the early stages of dementia, when activities of daily living are independent (or nearly so), there is less need for direct help, less need for caregivers to be in one’s personal space, and more personal control.
As dementia progresses, a person’s view of the world changes: conversations are more difficult, daily tasks take longer to complete, fatigue increases, tasks that used to be done without thinking require a major effort. To make matters worse, everyone around you moves too fast. Agitation and anxiety make sense if you consider the changes that are occurring in a person’s visual field, hearing, depth perception, ability to communicate, ability to walk, and independence.
Caregiver training is essential. Psychosocial and environmental interventions, recognition of personal habits and patterns can reduce or eliminate agitated or aggressive behaviors. Antipsychotics, although contraindicated in frail older adults, are sometimes used for a limited amount of time to reduce aggression (especially if related to psychosis), particularly among those most severely agitated. In frail, older adults, antipsychotics are usually contraindicated because they can increase mortality and worsen cognitive impairment.
Wandering is a normal human activity that most people enjoy. In the early stage of dementia, when a person is safe and balance is good, wandering is usually not seen as a problem.
As dementia progresses and damage begins to spread to the part of the brain associated with motor control, the risk for falls increases. Judgment may also decline, and a person may begin to wander into restricted areas or get lost in the community. At this stage, healthcare providers and caregivers often see wandering as a problem and disruptive to their care duties—especially if a facility or home has not been modified to allow and encourage safe wandering.
For a variety of reasons, caregivers and healthcare providers may want to control or prevent wandering. However, preventing residents from safely wandering can create a whole other set of problems such as boredom, loss of social interaction, stigma, loss of conditioning, and even skin breakdown.
Although wandering can appear aimless, hyperactive, and excessive—especially in the later stages of dementia, from the standpoint of the person with dementia it is a completely normal activity. People wander out of habit, out of curiosity, or because they are convinced something needs to be done such as cleaning or cooking. Wandering warms a person and relieves depression, boredom, pain, and discomfort.
Wandering can involve moving to a specific location, lapping or circling along a path, pacing back and forth, or wandering at random. More than half of people with dementia will wander at some point during the course of their disease.
Wandering is not limited to walking: people who have transitioned from walking to the use of a wheelchair also wander. There is no reason not to encourage this sort of activity so long as it can be done safely. Wheelchairs can usually be lowered to allow a person to self-proper with their feet and seating systems with drop seats can be installed in wheelchairs if the chair cannot be lowered.
People with Alzheimer’s are more likely to wander than those with other types of dementia. People with frontal-temporal dementia tend to pace and lap whereas people with Alzheimer’s disease tend to wander randomly. Psychotropic medications, particularly antipsychotics are associated with restlessness and a compelling need for movement or pacing (Burns et al., 2012).
A person-centered, team approach involving healthcare providers, families, and even other residents can be successful in managing wandering. Facilities that provide safe, looping wandering paths with numerous rest areas, provide regular exercise and activities, and have measures in place to prevent a person with dementia from wandering into client rooms have a great deal of success managing this behavior. Easy-to-grasp rails, grab bars, transfer poles, and ballet-type bars liberally installed throughout a facility encourage safe mobility and prevent falls. Clean, clear hallways provide easy access to rails and bars.
In a Canadian study seeking input about wandering from older adults with dementia living in a long-term care facility, researchers discovered that, from the perspective of the older adults themselves, wandering is a pleasurable activity that they considered healthful, purposeful, and social. Wandering is also an expression of unmet needs, such as a desire to be with family, to relieve boredom, or to continue a lifelong habit. Residents shared six reasons walking:
- It is enjoyable
- It has health benefits
- It provides purpose
- It has been a lifelong habit
- It is a form of socialization
- It provides a chance to be with animals (Adekoya & Guse, 2019)
A person’s pre-dementia lifestyle is clearly a factor in the desire to walk or wander and certain personality traits are evident is people who wander:
- They have an active interest in music.
- They tend to have an extroverted personality showing warmth, positive emotion, altruism.
- They were very involved with social activities and were active in social-seeking behaviors.
- They were physically active.
- They may have experienced stressful events throughout their life, necessitating multiple readjustments.
- They responded to stress by engaging in motor activities. (Futrell et al., 2010)
Imagine if a person whose pre-dementia lifestyle involved a lot of walking is now living in an unfamiliar environment and is being prevented from moving about. Stopping the natural tendency to explore, to become familiar with a new living space, and to socialize with new people can be extremely frustrating. It is no wonder that this can lead to depression, anger, and behavioral problems.
For people who wander away from their home or care facility, Florida maintains a Silver Alert program for cognitively impaired older adults who become lost while driving or walking. The Silver Alert program broadcasts information to the public so they can assist in the rescue of the endangered person and notify law enforcement with helpful information. For more information, contact the Silver Alert information line, local law enforcement, or the Florida Department of Law Enforcement either online or by phone at 888 356 4774.
Elena is a resident in a 5-story nursing home in Miami. She has moderate dementia and although she is non-ambulatory, she is very good at propelling her wheelchair. After breakfast in her room, an aide wheels her to the activities room and leaves her alone at a table with a jigsaw puzzle. After about 15 minutes Elena gets bored with the puzzle, exits the activities room, and heads down the hall. She is stopped twice by staff members, who turn her around toward the activities room with a reprimand.
When the staff member is out of sight, Elena turns back around and continues in the direction she was headed. She stops near an elevator, where she sits for a while watching people come and go. Several more staff members pass by and gently remind her not to get on the elevator. Each time she is left in the same place next to the elevator. Finally, when no one is looking Elena wheels into the elevator.
Antecedent (what causes a certain behavior): Elena is curious and used to like walking around Miami, exploring the different neighborhoods. She was never one to sit around doing nothing. She was bored with the jigsaw puzzle and wanted to do something more interesting. She rolls out into the hallway and stops near an interesting door that opens and closes with a satisfying swoosh sound. The people going in and out of the door smile at her.
Behavior: The door to the elevator is an interesting visual cue and Elena enjoys seeing people coming and going. People talk to her—and she likes the interaction—but she doesn’t understand what they are saying. She sits for a while watching people come and go and when the opportunity arises, she enters the elevator. When the door opens on the ground floor, she wheels out of the elevator, heads to the front door, and out onto the street. Her behavior is consistent with her personality and her previous habits.
Consequence: Once she gets into the elevator, Elena’s inability to think logically puts her at risk. She exits the elevator next to a door that leads out of the building and wanders into the street. Fortunately, someone sees her wandering down the middle of the street and convinces her to return to the nursing home.
Discussion: Large nursing homes are busy places, often understaffed, and often poorly designed for people with dementia. Nevertheless, caregivers and healthcare providers should try to understand the reason for Elena’s wandering and come up with activities that are appropriate for a person like Elena. Regular medications reviews will help staff understand if Elena’s behavior is related to medication side effects, overmedicating, or drug interactions. To keep Elena out of the elevator:
- Redirect her to a purposeful activity
- Provide places where she can wander safely
- Schedule regular exercise
- Offer simple, meaningful chores
- Attach an electronic device that alerts caregivers when she has wandered out of a designated area
- 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
- Take her for regular outings outside the building
- Allow her to keep a bird or pet in her room
- Provide safe, meaningful outdoor activities
Rummaging and Hoarding
Rummaging and hoarding occur when a person obsessively gathers, hides, or puts away items in a secretive and guarded manner. These behaviors are not necessarily dangerous or unsafe, but they can be frustrating for caregivers, healthcare personnel, and other residents. In a way, these rummaging is similar to wandering—a desire to explore, to do something meaningful, or to complete a task.
In the early stage, rummaging is likely more goal directed than in the later stages of dementia. Activities of daily living are nearly independent, and rummaging and hoarding might be invisible to caregivers. As cognition changes and short-term memory declines, hoarding and rummaging may become more pronounced. In the late stages, rummaging may appear completely obsessive and illogical to a caregiver or healthcare provider.
A person without dementia may hoard due to fear of losing money or possessions, a lack of control, or a need to “save for a rainy day.” A person with mild dementia may rummage simply out of confusion or forgetfulness. Hoarding is associated with insecurity and anger and an attempt to hold onto possessions and memories from the past. These actions are considered a type of obsessive-compulsive behavior.
As dementia progresses, memory loss, poor judgment, and confusion 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 fear being robbed (or may actually have been robbed) and feel a need to protect their possessions. Rummaging through familiar items can create a sense of safety and security.
In the later stage, rummaging and hoarding can become a real problem for an elder-care facility. A person with significant cognitive changes might enter another person’s room and rummage through their belongings. At this stage, a person with moderate to severe dementia does not understand that certain rooms are off limits—after all, in our homes, we can go wherever we want without someone stopping us.
Rummaging in another person’s room can be prevented by installing locks on drawers and closets. The rummaging impulse can 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 the home as well as in adult day care and nursing homes, important items such as credit cards or keys should be placed out of reach or in a locked cabinet. Other considerations for caregivers:
- Look for patterns (rummaging behaviors may not be as illogical as they seem to observers)
- Get rid of poisonous items such as caustic liquids
- Replace poisonous plants with edible plants (or at least non-poisonous plants)
- Label cabinets, doors, and closets (with words or pictures) to help the person find what they are looking for
- Get rid of clutter
- Observe carefully to learn the person’s favorite hiding places
- Check garbage for missing items
- Provide a place on wheelchairs for storage of needed items
Psychosis (Delusions and Hallucinations)
Psychosis is a neuropsychiatric symptom that can occur in people with dementia. Delusions, hallucinations, paranoia, euphoria, anxiety, disinhibition, or agitation are examples of psychosis. Sensory deficits such as impaired hearing or vision can contribute to psychosis because of distortions of sound or sight. For most people with dementia who experience psychosis, symptoms tend to worsen as cognition declines and dependence increases.
Although psychotic symptoms occur in AD, they are observed more frequently in other forms of dementia, such as Parkinson’s disease–related dementia, Lewy body dementia, and vascular dementia. The prevalence of psychosis in other forms of dementia, such as frontotemporal dementia, tends to be quite low (Fischer et al., 2017).
Psychotic symptoms can be caused at any stage of dementia by health factors such as urinary tract infections and dehydration or environmental factors commonly found in nursing homes and day care facilities such as poor lighting, too much noise, or sensory overload. Changes in the brain contribute to these behaviors, especially changes related to sensory awareness, memory, and decreased ability to communicate or be understood.
Visual hallucinations can occur in the moderate to severe stages of dementia and are particularly common in a person with Lewy body dementia. While atypical antipsychotics are sometimes used off-label to manage hallucinations, for a person with Lewy body dementia, antipsychotic medications can make hallucinations worse.
The first step in the management of psychosis is to rule out delirium as a cause. Caregivers must also determine if the claims by the person did occur. For someone with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, all medications should be carefully reviewed. This includes prescription and over-the-counter medications, as well as herbal supplements.
When communicating with someone who is expressing psychotic symptoms such as paranoia or delusions, realize that the complaint is real for that person. Do not argue; simply explaining the truth of the situation does not work. Do not agree with the person or validate the paranoia or delusion—try to respond to the person’s emotion. Delusions and hallucinations are often successfully addressed using behavioral interventions.
To manage hallucinations, decrease auditory and visual stimuli and evaluate for visual or hearing impairment. Other suggestions:
- Minimize violent or noisy TV
- Remove wall hangings
- Reduce noise, play relaxing music
- Cover mirrors
- Reduce glare from windows
- Ensure adequate lighting
Many older adults with dementia have sleep and circadian rhythm disturbances due to advanced age, the effects of certain chronic illnesses and medications, declining brain health, diminished mobility, and other causes. The American Geriatrics Society and the National Institute on Aging recognize a geriatric syndrome in which physical and mental risk factors overlap to increase risk for sleep and circadian disturbances. Numerous negative consequences are associated with sleep disturbances, including increases in cognitive decline, metabolic disease, high blood pressure, cardiovascular disease mortality, frailty, impaired quality of life, and hypersensitivity to pain (Capezuti et al., 2018).
Importantly, sleep disturbances can 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.
Sleep disruption can have the following features:
- Increased sleep latency
- Fragmented sleep and 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 daytime sleepiness
- Agitation, verbally disruptive behaviors, hallucinations, and nighttime wandering (Burns et al., 2012)
In AD, and likely in other neurodegenerative diseases, sleep disorders appear early. Sleep disorders worsen as the disease progresses, and their progression in the late stage of the disease is a strong predictive factor for mortality (Brzecka et al., 2018).
Sleep disturbances and accompanying symptoms often lead providers to prescribe psychoactive medications, including hypnotics. About half of nursing home residents with dementia are prescribed sedative-hypnotics, especially when displaying anxiety and agitation. However, many of these medications have been associated with an increased risk of falls and fractures in older adults (Capezuti et al., 2018).
Medications used to treat behavioral symptoms of dementia, as well as those used to slow the progression of dementia, can cause daytime sleepiness and lead to sleep disturbances.
Before treating sleep disturbances, look for potentially treatable causes such as pain, hunger and thirst, the need to urinate, infections, adverse drug reactions, and even noise. Nonpharmacological treatments include:
- Light therapy
- Good sleep hygiene practices
- Exercise and individualized social activities
- Restriction of caffeine, nicotine, and alcohol
- Maintaining a calm, warm atmosphere