Anyone who has worked with older adults who have 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. Behavioral changes in people with dementia are referred to somewhat generally as behavioral and psychological symptoms of dementia (BPSD).
The care for people experiencing behavioral symptoms places stress on caregivers and is costlier no matter what the setting. In nursing homes for example, the cost of care for people with behavioral symptoms is 3 times higher than that of other nursing home residents (Ahn & Horgas, 2013).
Often behavioral symptoms of dementia can be addressed with proper staff training, environmental modifications, and good communication. 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.
Dementia-care mapping (DCM) is another approach, which states that much of the frustration that people with dementia experience is due to negative environmental influences, including staff attitudes and care practices. Dementia-care mapping addresses these frustrations using: (1) systematic observation, (2) feedback to the staff, and (3) action plans (van de Ven et al., 2014).
This method encourages interventions at the individual level and the group level, as well as at the levels of management and organization. Dementia-care mapping is a multi-component intervention aimed at implementing diverse interventions to improve the quality and effectiveness of care (van de Ven et al., 2014).
Common Challenging Behaviors
Among many challenging behaviors associated with dementia, several stand out: agitated and aggressive behaviors, wandering, rummaging and hoarding, delusions and hallucinations, and sleep disturbances.
Agitation and Aggression
Agitation refers to non-specific restless behaviors that are excessive, inappropriate, and repetitive. These behaviors can include verbal, vocal, or motor activity.
Aggression is physically or verbally threatening behaviors directed at people, objects, or self. Aggressive behaviors can be a threat to the safety of those with dementia and to those around them (Burns et al., 2012).
Agitation and aggression occur in more than half of nursing home residents with dementia—often related to loss of control, discomfort, fear, or a response to a perceived threat or violation of personal space. Agitation and aggression often occur during personal care tasks involving close caregiver-resident contact (Burns et al., 2012). Pain is also a cause of agitated and aggressive behaviors, especially in nursing home residents (Ahn & Horgas, 2013).
Psychosocial and environmental interventions can reduce or eliminate agitated or aggressive behaviors. Antipsychotics are also sometimes used to 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 aimless, repetitive locomotion, hyperactivity, or excessive walking. Wandering patterns can include moving to a specific location, lapping or circling along a path, pacing back and forth, or wandering at random. Up to 60% of persons with dementia will wander at some point during the course of their disease (Rowe et al., 2011). Wandering is a particular concern in nursing homes, where about half of residents with dementia wander (Ahn & Horgas, 2013).
People with Alzheimer’s are more likely to wander than those diagnosed with other types of dementias. 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).
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. Wandering can be addressed or even encouraged by providing safe, looping wandering paths with interesting rest areas and by providing regular exercise and activities.
Interestingly, a person’s pre-dementia lifestyle may be a factor in their desire to wander. People with certain characteristics are more likely than others to wander:
- Those with an active 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.
- People who were physically active.
- People who experienced stressful events throughout their life, necessitating multiple readjustments.
- People who respond to stress by engaging in motor activities (Futrell et al., 2010).
Mrs. Winkler is a resident in a five-story nursing home in San Francisco. She has moderate dementia and is non-ambulatory. After breakfast in her room, an aide wheels her to the activities room and parks her at a table with a jigsaw puzzle. After about 20 minutes Mrs. Winkler gets bored with the puzzle, exits the activities room, and heads down the hall. She is stopped twice by staff members, who turn her back toward the activities room with a reprimand.
When the staff member is out of sight, Mrs. Winkler turns around and continues in the direction she was headed. She stops near the elevator, where she sits for a while watching people come and go. Several staff members pass her and tell 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.
Mrs. Winkler is curious and used to like walking around the city, exploring the different neighborhoods. She was never one to sit around doing nothing. The room she is in is kind of boring so she heads down the hall and stops near the elevator.
The door to the elevator is an interesting visual cue and Mrs. Winkler enjoys seeing people coming and going. People talk to her—and she likes the interaction—but she doesn’t understand what they are saying. When a door opens, Mrs. Winkler wheels into 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.
Once she gets into the elevator, Mrs. Winkler ’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 is able to convince her to return to the nursing home.
One solution is move Mrs. Winkler to a place where she cannot see or hear the elevator. Caregivers should try to understand the reason for her wandering and make sure her wandering is not the result of medication side effects, overmedicating, or drug interactions. To keep Mrs. Winkler out of the elevator, try the following:
- Redirect her to a purposeful activity.
- Provide a place 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.
- Encourage a family member to take her for a stroll outside the building or for a ride in a car.
Rummaging and Hoarding
Rummaging and hoarding occurs 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 and other residents.
A person with dementia may hoard due to fear of losing money or possessions, a lack of control, a need to “save for a rainy day,” or simply out of confusion. Hoarding is associated with insecurity and anger and an attempt to hold onto possessions and memories from the past. These actions are a type of obsessive-compulsive behavior.
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 fear being robbed and feel a need to protect their possessions. Rummaging through familiar items can create a sense of safety and security.
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 the home, important items such as credit cards or keys should be placed out of reach or in a locked cabinet. 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 .
[Material in this section is from Burns et al., 2012.]
Psychosis is a disturbance in the perception or appreciation of objective reality. Psychotic symptoms can manifest delusions, hallucinations, and paranoia. Sensory deficits can contribute to psychosis because of distortions of sound or sight.
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. Paranoia is a type of delusion in which person believes, without evidence, that others are mean, threatening, lying, or unfair.
Paranoia can cause feelings of persecution, fear, anxiety, and exaggerated self-importance. A person experiencing paranoia may be suspicious of caregivers and friends; they may feel people are stealing from them or planning them harm.
Psychotic symptoms can be caused by health factors such as urinary tract infections (UTIs) 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.
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.
The first step in the management of psychosis 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.
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 (OTC) medications, as well as herbal supplements.
When communicating with someone who is expressing paranoia or delusions, realize that the complaint is real for that person. Do not 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.
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.
To manage hallucinations, decrease auditory and visual stimuli and evaluate for visual or hearing impairment. Other suggestions include:
- Minimize violent or noisy TV, remove wall hangings
- Reduce noise, play relaxing music
- Cover mirrors
- Reduce glare from windows
- Ensure adequate lighting
Sleep disturbances, including sleep problems or changes to sleep schedule, are common in people with dementia. Approximately one-quarter to one-third of those with Alzheimer’s disease have problems with sleep, although scientists are not certain why. As with behavior and memory changes, they are a result of Alzheimer’s impact on the brain (Alzheimer’s Association 2019d; Deschenes & McCurry, 2009). 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.
In a recent review of research Petrovsky and others noted that “sleep disruption was negatively associated with all four quality-of-life domains [physical, social/behavioral, emotional well-being, and cognitive] in persons with dementia.” (Petrovsky et al., 2018). Sleep research is ongoing, and more is needed, especially for non-pharmacologic interventions.
Sleep disruption may 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; Savaskan, 2015; Alzheimer’s Association 2019d)
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. Short-term sleep disturbances in people with dementia are often treated with antidepressants, benzodiazepines, or non-benzodiazepines, although there is limited evidence to support their long-term safety in cognitively impaired older adults (Deschenes & McCurry, 2009; Savaskan, 2015).
Commonly used sleep medications generally do not improve overall sleep quality in older adults. In the cognitively impaired, these also come with greater risk of falls and fractures, confusion, and decline in the ability to exercise self-care. Antipsychotics, which are sometimes used because of behaviors that accompany the sleep disturbance, have a higher risk of stroke and death among older dementia patients. “Most experts and the National Institutes of Health (NIH) strongly encourage the use of non-drug measures” in patients with Alzheimer’s disease. When medications are needed, the recommendation is “begin low and go slow” (Alzheimer’s Association 2019d)
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. In addition, depression, restless legs syndrome, and sleep apnea need to be ruled out (Alzheimer’s Association 2019d).
Nonpharmacologic treatments (many currently being researched) include:
- Light therapy
- Good sleep hygiene practices
- Exercise during the day and individualized social activities
- Restriction or elimination of caffeine, nicotine, and alcohol
- Calm atmosphere
- Biofeedback (Deschenes & McCurry, 2009; Savaskan, 2015)
The Alzheimer’s Association (2019d) suggests these practices, which can be implemented by anyone:
- Maintain regular times for meals and for going to bed and getting up
- Seek morning sunlight exposure
- Encourage regular daily exercise, but no later than four hours before bedtime
- Avoid alcohol, caffeine and nicotine
- Treat any pain
- If the person is taking a cholinesterase inhibitor (tacrine, donepezil, rivastigmine or galantamine), avoid giving the medicine before bed
- Make sure the bedroom temperature is comfortable
- Provide nightlights and security objects
- If the person awakens, discourage staying in bed while awake; use the bed only for sleep
- Discourage watching television during periods of wakefulness (Alzheimer’s Association, 2019d)