Changes in behavior occur in the vast majority of people with dementia. These changes are referred to as behavioral and psychological symptoms of dementia (BPSD) or neuropsychiatric symptoms of dementia (NSP). More than 90% of people affected with dementia will eventually experience some type of challenging behavior associated with their dementia (Wang et al., 2020).
Behavioral and psychological symptomscan occur at almost any stage of Alzheimer’s disease, and in some patients, these symptoms can even appear before memory deficits develop. The severity of the symptoms increases significantly with disease progression, affecting the quality of life of both people with dementia and their caregivers. Though memory deficits are the best studied aspects of Alzheimer’s, it is behavioral and psychological symptomsthat are often the greatest source of burden for everyone involved (Mao et al., 2020).
Behavioral changes associated with dementia range from mild (depression, anxiety, irritability, euphoria, and apathy) to severe (agitation, aggression, vocalizations, hallucinations, impulsivity, psychosis, and disinhibition*). Symptoms can be constant but usually come and go. They are associated with significant client and caregiver distress, increased rates of institutionalization, and increased mortality (Mao et al., 2020).
*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. Includes socially or sexually inappropriate behaviors.
Among the many behavioral and psychological symptoms associated with Alzheimer’s disease and other types of dementia, depression*, apathy, agitation, aggression, delusions, and hallucinations are some of the most common. These behavioral changes can be manifested in wandering, rummaging and hoarding, obsessive-compulsive behaviors, and sleep disturbances. Common causes of behavioral changes in people with dementia include:
- Brain changes, cell death
- Unmet physical needs (pain, discomfort, fatigue, boredom, lack of socialization, lack of meaningful activity)
- Challenging tasks (frustration due to inability to figure out or complete a task)
- Environmental issues (cold, heat, noise, uncomfortable chairs, too much or too little
Susan Howland, California Southland Chapter of the Alzheimer’s Association
*See Module 4: Treatable and Irreversible Dementias for more on depression.
Source: Health Services Advisory Group, Inc., 2014
Areas of the Brain Related to Behavioral Control
In Alzheimer’s disease, behavioral symptoms may be mainly due to frontal lobe abnormalities. Apathy has also been associated with frontal structures, while delusions have been correlated with frontal, parietal, and temporal structures. Depressive symptoms are thought to be due to damage to the thalamus, lentiform nucleus, and medial temporal cortex, while agitation has been associated with temporal and frontal structures (Rouch et al., 2014).
Behavioral changes such as anxiety, agitation, depression, fear, and anger have been associated with damage to the amygdala, which is responsible for emotional control and is anatomically linked to the hippocampus. To understand why emotions, behavior, and memory are so strikingly affected by dementia, please view this video about the limbic system.
Source: The Khan Academy, 2013
Challenging Behaviors Associated with Brain Deterioration
Many challenging behaviors seen in people with dementia are associated with changes to the brain, although many are not. Dementia likely lowers a person’s ability to cope with emotional frustrations such excessive noise, boredom, and communication difficulties. But, in addition to changes in the brain, acute medical conditions, unmet needs, or pre-existing personality or psychiatric illness can have a profound effect on a person’s well-being (Kales et al., 2015). Some of the most common of challenging behaviors in people with dementia are apathy, agitation and aggression, delusions and hallucinations, wandering, obsessive behaviors, and sleep disturbances.
Apathy causes a lack of interest or emotion, loss of motivation, and blunting of emotions. It may be an early symptom of cognitive impairment, especially in someone with frontotemporal dementia, vascular dementia, or post-stroke.
Apathy is different from depression although apathy and depressive symptoms may occur together (Volicer & van der Steen, 2014). In Alzheimer’s disease, apathy is associated with loss of nerve cells and disconnections within specific parts of the brain, including the amygdala. This disconnection within brain circuits suggests that impaired transmission of a key neurotransmitter called acetylcholine* is involved in apathy pathophysiology (Rea et al., 2014).
*Acetylcholine: a neurotransmitter found throughout the body responsible for the contraction of muscles and plays a key role in memory, learning, cognition, attention, arousal, motivation. Depletion of this neurotransmitter is associated with Alzheimer’s disease.
Apathy is often under-recognized, under-diagnosed, and poorly managed. It is the cause of distress for caregivers because it places the responsibility for day-in and day-out decisions on them. Over time, this can lead to anger and conflicts between patients and caregivers. This makes apathy a risk factor for institutionalization (Rea et al., 2014).
Agitation and Aggression
Agitation is observable, non-specific, restless behaviors that are excessive, (seemingly) inappropriate, and repetitive. This can include verbal, vocal, or motor agitation (Burns et al., 2012). Examples of agitation include becoming easily upset, repeating questions, arguing or complaining, hoarding, pacing, inappropriate screaming, crying out, disruptive sounds, rejection of care, and leaving home (Kales et al., 2015).
Aggression, on the other hand, involves physically or verbally threatening behaviors directed at people, objects, or self. Aggression includes verbal insults, shouting, screaming, obscene language, hitting, punching, kicking, pushing and throwing objects, and sexual aggression (Burns et al., 2012).
Physiologically, aggression may be related to a decrease in the activity of certain neurotransmitters in the brain, especially serotonin* or acetylcholine. Frontal lobe dysfunction, which occurs in frontotemporal dementia, may be a factor. Aggression may also be related to underlying depression or psychotic symptoms (Burns et al., 2012).
*Serotonin: a neurotransmitter found throughout the body, helps to regulate mood, appetite, digestion, sleep, memory, and sexual desire. There is thought to be a link between serotonin and depression.
Agitated and aggressive behaviors can also be an attempt to communicate, and are often related to feelings of helplessness, loss of control, discomfort, pain, or fear. 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).
Pain is also associated with agitated and aggressive behaviors. Nursing home residents with relatively severe pain are more likely to display these behaviors. Agitation and aggression occur in about 50% to 80% of nursing home residents with cognitive impairments (Ahn & Horgas, 2013).
Delusions and Hallucinations (Psychosis)
Psychosis is a disturbance in the perception or appreciation of objective reality (Burns et al., 2012). This can include delusions* and hallucinations**.
*Delusion: a false idea or belief or a misinterpretation of a situation.
**Hallucinations: sensory events in which a person hears, tastes, smells, sees, or feels something that is not there.
Hallucinations are particularly common in people with Parkinson’s disease dementia and dementia with Lewy bodies (DLB). In fact, the presence of recurrent visual hallucinations is one of the main features in the clinical diagnosis of DLB. Delusions and hallucinations can trigger other neuropsychiatric symptoms, such as agitation or aggression (Vermeiren et al., 2015).
Visual hallucinations have been studied using a special type of CT scan. A group of patients were examined and scanned for illusions, simple visual hallucinations, and complex visual hallucinations. The CT scans showed decreased blood flow in three regions of the brain: (1) a region responsible for the processing of visual information, (2) an area involved with error detection, and (3) an area involved with inhibitory control of visual information (Heitz et al., 2015). These damaged areas of the brain caused:
- Problems recognizing shape, color, position in space, and movement
- Visual distortions
- Errors in visual processing (Heitz et al., 2015)
Delusions and hallucinations have also been associated with changes in the amount and availability of certain neurotransmitters within the brain. In particular, too much dopamine as well as an increase in the number of dopamine receptors has been seen in patients with psychosis compared to people without psychosis. Because dopamine is involved with the regulation of many body functions, too much dopamine can cause hyperactivity, fear, and rage.
Urinary tract infections, poor lighting, sensory overload, and a reaction to a medication can also contribute delusions and hallucinations. In a person with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, a person experiencing visual hallucinations should have all medications carefully reviewed.
The first step in the management of delusions and hallucinations is to rule out delirium as a cause (see Module 3 for more on delirium). Another important factor is to determine if the claims by the person with dementia actually did occur (Burns et al., 2012).
With regards to psychosis, antipsychotics are the primary pharmacologic treatment option, although they may cause serious side effects, increase mortality rates—and their efficacy is “modest” at best. The administration of psychotropic medication has also been associated with a more rapid cognitive and functional decline, and not necessarily with improved neuropsychiatric symptoms (Vermeiren et al., 2015).
The pharmacologic treatment of neuropsychiatric symptoms in someone with dementia with Lewy bodies requires a cautious approach. All drugs with anticholinergic side effects, such as tricyclic antidepressants, low potency neuroleptics, antiparkinsonian anticholinergic drugs, and antispasmodics for bladder or gastrointestinal tract, should be avoided due to their potential to exacerbate psychotic symptoms. The administration of memantine (Namenda) may result in variable symptomatic side effects in patients with dementia with Lewy bodies, including worsening of psychosis or even an adverse drug reaction (Vermeiren et al., 2015).
Wandering or “Walking About”
Wandering has been defined as the inability of older adults with dementia to find their way while pursuing a need or goal. The behavior has also been referred to as a normal human activity that people engage in during their lifetime. Wandering is associated with terms such as “elopement”, “endangered”, and “getting lost” (Adekoya and Guse, 2019).
More than half of persons with dementia will “wander” into the community at some point during the course of their disease. In nursing homes, wandering is often referred to as “aimless walking” (Adekoya and Guse, 2019).
Wandering 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). Wandering is more common in people with Alzheimer’s disease than other types of dementia (Burns et al., 2012).
The desire to move about can be related to boredom, pain and discomfort, or disorientation. The tendency for people with Alzheimer’s dementia to wander may be related to memories and habits from the past, buried deep in long-term memory.
When healthcare workers perceive wandering as a problem and disruptive to their care routines, they may want to control or prevent the behavior. However, preventing residents from wandering could mean their losing the associated benefits of walking, including improved circulation and oxygenation and decreased risk of contractures (Adekoya and Guse, 2019).
Interventions for wandering have prevented the behavior using physical and pharmacological restraints. Apart from the known harmful effects of restraints, such as pressure sores, anxiety, physical violence, falls, and high morbidity and mortality rates, the intervention is also ineffective. Nonpharmacological interventions are a safer option and include the use of electronic tagging and tracking devices, behavioral approaches, exercise, music therapy, aromatherapy, camouflage doorknobs and exits, using strips of tape in front of exit doors, locked units, and environmental modifications (Adekoya and Guse, 2019).
A person’s pre-dementia lifestyle may be a factor in whether a person is likely to wander. People who were physically active, had an interest in music, were extroverted and social, and people who dealt with stress by engaging in motor activities are more likely to wander. Learning about a person’s earlier life allows caregivers to understand individual behaviors and consider effective interventions that address wandering.
For older adults with dementia who spend time in an organized setting such as adult day care, the management of wandering should, at a minimum include:
- Identifying risk for wandering,
- Providing appropriate staffing and supervision,
- Reducing environmental triggers for wandering, and
- Using individualized nursing interventions to address the causes of wandering behavior (Silverstein & Flaherty, 2018).
Rummaging and Hoarding
It is unclear to what degree obsessive-compulsive behaviors such as rummaging and hoarding are related to brain deterioration. Memory loss, poor judgment, boredom, and confusion can contribute to the impulse to rummage and hoard. Likewise, feelings of paranoia may create a need to protect possessions and rummaging may create a sense of safety and security.
In people with dementia, hoarding can arise due to lack of control, a fear of losing money or possessions, the need to “save for a rainy day,” or simply to have something to do. Hoarding is associated with insecurity and anger and may be an attempt to hold onto possessions and memories from the past. Confusion can lead to rummaging through another person’s belongings, which can be particularly frustrating for neighboring residents.
Sleep disturbances are common in 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: an inexact and overused term used to describe 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.
Of the estimated 5.8 million people in the United States living with Alzheimer’s disease and related dementias, at least one-third have difficulty sleeping and approximately two-thirds of their estimated 18.5 million unpaid caregivers report sleep disturbances themselves. The precipitating factor for institutionalization of those with dementia is often a disturbed sleep–wake (circadian) cycle that leads them to remain awake at night, causing stress and fatigue for their families and caregivers. This behavior continues in nursing home environments, where residents experiencing daytime agitation also tend to sleep poorly at night and nap during the day (Figueiro et al., 2020).
The symptoms of sleep disruption vary according to the type of dementia and can include the following features:
- Difficulty getting to sleep
- Sleep fragmentation (waking often)
- Increased early-morning awakenings
- Decreased total sleep time
- Decreased slow-wave and rapid-eye-movement (REM) sleep
- Episodes of delirium or disorientation during sleep
- Increased daytime napping and excessive daytime sleepiness
- Agitation, verbally disruptive behaviors, hallucinations, and nighttime wandering (Burns et al., 2012)
Medications can affect daytime alertness and can cause sleep disturbances. In particular, antidepressants, benzodiazepines, and non-benzodiazepines can negatively affect sleep patterns. These types of medications are commonly prescribed despite a lack of evidence that they are safe to use in cognitively impaired older adults.
A person’s ability to control and monitor inappropriate behavior is an important social skill. The ability to inhibit certain actions allows us to suppress actions inappropriate for the behavioral context (Mayse et al., 2015). The loss of this ability—disinhibition—results in a lack of restraint, disregard for social convention, impulsiveness, poor safety awareness, and an inability to stop strong responses, desires, or emotions.
Healthcare providers and caregivers may label a behavior as inappropriate when, in fact, the behavior is completely appropriate to the situation. For example, wandering is logical to a client who is bored. Loudly expressing frustration is appropriate when a client is cold or in pain. Whether a behavior is labelled “inappropriate” is often related to the amount of distress the behavior causes caregivers.
Inappropriate or disinhibited behaviors are particularly common in clients with frontotemporal dementia. Disinhibition, impulsivity, and socially inappropriate behavior are core diagnostic features of this disorder, together with perseveration, hyperorality,* loss of empathy, apathy, and executive dysfunction including cognitive inﬂexibility (Hughes et al., 2015).
*Hyperorality: the tendency to insert inappropriate objects in one’s mouth.
Anxiety and COVID-19
An extended lockdown, as is occurring during the COVID-19 pandemic, with imposed self-isolation and change or deprivation of usual daily activities causes stress in both patients and caregivers. Factors triggering an increase of pandemic-related psychiatric disorders may be related to isolation, restrictions on movement, loss of social contacts and relationships, and loneliness. Anxiety and depression may arise from the rapid need to adapt to a new lifestyle and changes to day-to-day routines. In addition, increased alertness due to fear of contagion and grief or even mourning for the loss of family members or friends may undermine mental health wellbeing (Cagnin et al., 2020).
Changes in neuropsychiatric symptoms in people with dementia may exacerbate the psychological effects of lockdown in their caregivers, a situation which may further worsen behavioral symptoms, acting in a vicious loop. Lack of activities and cognitive and physical stimulation may cause delirium in individuals with dementia, contributing further to morbidity. There is also increase evidence that psychological symptoms due to stressor events can contribute to cognitive decline (Cagnin et al., 2020).
Employee Response to Inappropriate Behaviors
Direct care workers, as well as licensed staff, often lack dementia-specific training, which can effectively address inappropriate behaviors in their clients with dementia. Because clients in adult day care tend to be in an earlier stage of dementia, they generally need less assistance than people in other long-term care settings, particularly with eating, walking, and toileting (Harris-Kojetin et al., 2016). Nevertheless, employees in specialized adult day care will encounter challenging behaviors in their clients with dementia. The most common behaviors you will encounter are anxiety, aggressive behaviors, and difficulties with communication.
To address these behaviors, begin by reminding yourself that each person is worthy of respect—this is the basis for person-centered care. Also remember that there is usually a reason for the unwanted behavior—even if you don’t understand that reason. Keep in mind the safety of the client, as well as the safety of staff. Follow these guidelines:
- Use person-centered care as the basis for your interactions with all clients. This means treating clients and caregivers with dignity and respect.
- Try to determine the cause of the behavior using the problem-solving approach.
- Antecedent—what caused the behavior?
- Behavior—what is the behavior?
- Consequence—what are the consequences of the behavior?
- Consider the safety of clients and staff.
Caregivers should be prompted to describe what they are seeing, rather than using generic terms such as “agitation” or “depression,” which can have different meanings to different observers. Other essential elements include the onset (i.e., acute, sub-acute, or chronic/progressive), frequency, timing, and trajectory of the disturbances, and any relationship to environmental changes or medication changes. There may be a temporal relationship with events such as a change in environment (e.g., moving from home to nursing facility), or symptoms might worsen in the evenings, following family visits, or when providing personal care (Cloak and Khalili, 2020).
Callie Disrobes at a Birthday Party
Introduction: Older adults with dementia often exhibit unexpected, challenging behaviors that may be difficult for healthcare workers and family members to understand and manage. These behaviors may be caused by any number of factors including fear, hunger, environmental issues, boredom, side effects of medications, loud noises, lack of exercise, or pain, among other things. In this example, Callie, a 96-year-old resident in an assisted living memory care unit with moderate to severe dementia, suddenly (and quietly) began to remove her clothes during a birthday party in the dining room.
Client Information: Callie was a resident in an assisted living facility memory care unit. Although she can walk with assistance, she usually prefers to sit quietly by herself in the living room. She rarely interacts with other residents and prefers simply to watch visitors come and go. Callie rarely smiles and rarely speaks. However, on occasion she has a negative reaction to large crowds or noisy environments. Staff members understand this and try to remove her from these stressors.
Timeline: One weekend, on a very warm day in August, a family member arranged for a birthday party in the living room for her mother. All the residents were invited, including Callie, but the weekend staff forgot to take Callie to a quiet area. With everyone’s attention on the celebration, no one noticed that Callie had begun removing her clothing. A staff member turned just in time to see her take off her slacks and underpants.
Intervention: All staff members had received dementia-specific training and knew that when something unexpected happens, the safety and dignity of the resident must come first. Rather than immediately trying to get Callie dressed, which might have caused a negative reaction, the activities director simply asked everyone to leave the room for a few minutes. Jennifer, a nursing assistant, sat next to Callie and quietly asked if she could help Callie get dressed. Callie responded with a definite “no” and pulled off the remainder of her clothing.
Another staff member brought a sheet to cover Callie but stood by the door to maintain privacy and see if her help was needed. Jennifer stayed by Callie’s side and after a few minutes asked Callie if she could help. Callie’s response this time was that she was cold. Promising her some birthday cake if she would get dressed, Jennifer was able to help Callie get dressed; after Callie had moved to a quiet area (with a piece of cake), the party goers were brought back into the room.
Discussion: Disinhibition, the loss of awareness of what is appropriate behavior, affects many individuals with dementia. If the staff had gotten upset and embarrassed for her, Callie may well have reacted negatively. Temporarily removing the others from the room respected Callie’s dignity and gave her a few moments to experience physical discomfort without her clothes. Once the room quieted down, she accepted assistance and a “reward” for getting dressed again.
Staff members discussed the incident in a meeting the next day and agreed that they had forgotten to keep an eye on Callie as the birthday party got underway. Staff members were reminded that Callie was uncomfortable with noise and lots of activity but that overall, they did a good job diffusing the situation while taking Callie’s dignity and safety into account.
Client Perspective: Callie was unable explain why she took off her clothes but it was clear that she felt no embarrassment when she did it. In fact, when asked about the incident, she claimed she didn’t remember a birthday party or even being in the dining room that day.
Source: Kisses for Elizabeth: A Common Sense Approach to Alzheimer’s and Dementia (2012), by Stephanie Zeman, RN, MSN.