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). It is estimated that up to 90% of patients will eventually experience challenging behaviors associated with their dementia (Passmore, 2013).
Behavioral changes associated with dementia range from mild (depression, anxiety, irritability, and apathy) to severe (agitation, aggression, vocalizations, hallucinations, and disinhibition,* among others). Symptoms can be constant or come and go and are associated with client and caregiver distress, increased rates of institutionalization, and increased mortality (Nowrangi et al., 2015).
*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 of dementia 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.
*See Module 3: Treatable and Irreversible Dementias for more on depression.
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. https://www.youtube.com/watch?v=GDlDirzOSI8
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 neurobiologic 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 is a lack of interest or emotion and may be an early symptom of cognitive impairment, especially in the frontotemporal dementia. 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 involved in the regulation of memory and learning.
Apathy is one of the most under-recognized, under-diagnosed, and poorly managed aspects of dementia (Leroi & Robert, 2012). 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 is observable, non-specific, restless behaviors that are excessive, 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 involved with the regulation of mood, memory, sleep, and cognition.
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).
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:
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).
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 about half of residents with dementia (Ahn & Horgas, 2013).
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.
A person’s pre-dementia lifestyle may be a factor in whether a person is likely to wander (Futrell et al., 2010). 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:
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 very 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: 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.
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). The symptoms of sleep disruption vary according to the type of dementia and may include the following features:
Medications used to treat 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).
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.
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). In general, about 1/3 of day care clients need help with toileting, about 1/4 need help with eating, and about 1/3 need help with medication management. Nearly half need some assistance with walking and about 1/3 need help with transfers (Dwyer et al., 2014).
Nevertheless, employees in specialized adult day care will encounter inappropriate and 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:
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.