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 dementia patients will eventually experience challenging behaviors associated with their dementia (Passmore, 2013).
The exact cause of Alzheimer’s disease and other types of dementia is still unknown. In Alzheimer’s disease, and likely in other forms of dementia, damage within the brain is related to a so-called pathologic triad: (1) formation of beta-amyloid plaques; (2) disruption of a protein called tau, leading to the formation of neurofibrillary tangles; and (3) degeneration of cerebral neurons (Lobello et al., 2012).
But these pathologies explain only a part of the cognitive decline in older adults and a large part of the cognitive impairment in late life remains unexplained (White et al., 2017). Approximately a third of Alzheimer’s dementia cases may be attributed to seven potentially modifiable risk factors: diabetes, midlife hypertension and obesity, smoking, depression, cognitive inactivity, and low educational attainment (Killin et al., 2016).
Genetics likely plays a role in the development of some types of dementia, especially early-onset Alzheimer’s disease. Early-onset Alzheimer’s disease occurs between a person’s thirties and mid-sixties and represents less than 10 percent of all people with Alzheimer’s. Some cases are caused by an inherited change in 1 of 3 genes, resulting in a type known as early-onset familial Alzheimer’s disease, or FAD. For other cases of early-onset Alzheimer’s, research suggests there may be a genetic component related to factors other than these three genes (ADEAR, 2019).
In all, more than twenty types of dementia have been identified and symptoms are a little different in each type. Knowing the differences will help you understand why someone with dementia is acting the way they are.
Challenging Behaviors and Dementia
Challenging behaviors increase demands on staff and can increase job-related stress, burnout, and staff turnover. For clients with dementia who are experiencing behavioral and psychological symptoms of dementia, the cost of care is three times higher than that of other nursing home clients. About 30% of these costs are related 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 can be used along with medications to create a structured, safe, low-stress environment that promotes regular sleep and good eating habits, minimizes unexpected changes, and employs 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.
Conditions other than dementia can affect cognition, causing dementia-like symptoms; some of these conditions are reversible with appropriate treatment (NINDS, 2017):
- Side effects of medications or medication interactions
- Metabolic and endocrine abnormalities
- Nutritional deficiencies, especially of vitamin B1 (thiamine)
- Some chronic infections around the brain
- Head injuries and subdural hematomas
- Poisoning from exposure to lead, heavy metals, or other poisonous substances
- Alcohol, prescription medications, and recreational drugs
- Brain tumors, space-occupying lesions, and hydrocephalus
- Hypoxia or anoxia (not enough oxygen)
- Autoimmune cognitive syndromes
- Sleep apnea
Delirium and depression can also affect cognition and are particularly prevalent and often overlooked or misunderstood in older adults. Both conditions can be superimposed on dementia, particularly in older hospitalized patients.
Delirium is a syndrome with an acute onset and a fluctuating course. It develops over hours or days and is temporary and reversible. The most common causes of delirium are related to medication side effects, hypo or hyperglycemia (too much or too little blood sugar), fecal impactions, urinary retention, urinary tract infections, electrolyte disorders and dehydration, infection, stress, metabolic changes, an unfamiliar environment, injury, or severe pain.
The prevalence of delirium increases with age, and nearly 50% of patients over the age of 70 experience episodes of delirium during hospitalization. Delirium is under-diagnosed in almost two-thirds of cases or is misdiagnosed as depression or dementia. Early diagnosis of delirium can lead to rapid improvement. However, diagnosis is often delayed, and problems remain with recognition and documentation of delirium by healthcare providers (Hope et al., 2014).
Depression is a disorder of mood involving a disturbance of emotions or feelings. The diagnosis of depression depends on the presence of two cardinal symptoms: (1) persistent and pervasive low mood, and (2) loss of interest or pleasure in usual activities. Depressive symptoms are clinically significant when they interfere with normal activities and persist for at least two weeks, in which case a diagnosis of a depressive illness or disorder may be made.
Symptoms of depression can include:
- Persistent sad, anxious, or “empty” mood
- Feelings of hopelessness, guilt, worthlessness, or helplessness
- Irritability, restlessness, or having trouble sitting still
- Loss of interest in once pleasurable activities, including sex
- Decreased energy or fatigue
- Moving or talking more slowly
- Difficulty concentrating, remembering, making decisions
- Difficulty sleeping, early-morning awakening, or oversleeping
- Eating more or less than usual, usually with unplanned weight gain or loss
- Thoughts of death or suicide, or suicide attempts
- Aches or pains, headaches, cramps, or digestive problems without a clear physical cause and/or that do not ease with treatment
- Frequent crying (NIA, 2017)
Agitation and Aggression and Its Causes
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 (DCRC, 2014)
Agitation and aggression occur in about 50% to 80% of nursing home residents with cognitive impairments (Ahn & Horgas, 2013). Aggressive behaviors occur in both men and women, but overt aggression is more common in men. A person with physical or functional impairment may express their frustration with agitation, vocal outbursts, or loud complaints.
Agitated and aggressive behaviors are almost always related to loss of control, physical discomfort, need for attention, feelings of humiliation, misunderstanding, or fear. People may become agitated or aggressive if they feel threatened or feel their personal space is being invaded. This is a common reaction with personal care tasks that require close contact, such as bathing or toileting.
Aggression may have a physiologic basis; it may be related to a decrease in the activity of serotonin* or to reduced transmission of acetylcholine** in the brain. Frontal lobe dysfunction has also 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).
*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.
**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.
Wandering and Its Causes
At some point during the course of their disease, people with dementia may wander or try to leave their home or facility without a companion—a behavior often called exit-seeking. Although there are no reliable estimates of the percentage of people who do this, more than half of people with dementia may wander at some point during the course of their disease. Wandering is a safety concern and one of the more challenging dementia-related behaviors for family and paid caregivers (Tilly, 2015).
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. Wandering can be goal-directed, in which a person tries to reach an unobtainable goal, or non-goal-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).
Those with Alzheimer’s disease are more likely to wander than those diagnosed with other types of dementias. Wandering is more prevalent in men and in younger persons with dementia. Those with frontal-temporal dementia have a greater tendency to pacing and lapping behaviors whereas those with AD are more inclined to wander at random. 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, discomfort, disorientation, and memory problems. People may wander out of habit or because they think something 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 wandering. Studies have indicated that people with certain characteristics are more likely than others to wander:
- People with an active physical and mental interest in music
- People with an extroverted personality showing warmth, positive emotion, altruism
- People who were very involved with social activities and 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)
Rummaging and Hoarding and Its Causes
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 clients.
Hoarding can be due to fear of losing money or possessions, lack of control, the 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 other clients.
Psychosis and Its Causes
Psychosis is a disturbance in the perception or appreciation of objective reality (Burns et al., 2012). Symptoms can include delusions, hallucinations, and paranoia, 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 be triggered 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.
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.
Delirium vs. Psychosis
It may be difficult to distinguish delirium from psychosis, but it is important to understand the difference. Delirium (also called acute confusion) is a sudden, severe confusion with rapid changes in brain function and a fluctuating course. Delirium develops over hours or days and is temporary and reversible. Delirium can be caused by urinary tract infections or other simple infections, low sodium, constipation, dehydration, and a number of other underlying medical causes. It is important to review vital signs and check for these causes before concluding that a behavioral change is caused by psychosis.
Causes of Sleep Disturbances
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).
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 and worsen as the disease progresses. 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).
Disordered sleep is also an issue for family caregivers. Providing home-based care to people with dementia can significantly affect the sleep of family members, and therefore their health and ability to cope with the emotional and physical demands of caregiving, all to the detriment of their continued ability to maintain the person with dementia at home. Support for caregivers is now understood as key for preventing institutionalization (Brown et al., 2014).
Healthcare providers, service organizations, and care providers lack awareness regarding disordered sleep and sleep interventions for both people with dementia and for their sleep-deprived caregivers. Although nonpharmacological sleep interventions are effective for improving restorative sleep among older persons, the inaccurate belief is pervasive that reduced hours of sleep and decreased ability to sleep well in old age are “normal” aspects of aging. This mistaken belief, coupled with the reluctance of people with dementia and their families to seek help for sleep issues, contributes to the under-diagnosis and under-treatment of disordered sleep in this growing population (Brown et al., 2014).
Adult daycare services can have a positive effect on sleep patterns. In a Norwegian study, caregivers reported that attending adult daycare helped readjust the sleep patterns of the person with dementia: more activity during the day led to better sleep at night, which also meant better sleep for the caregiver (Tretteteig et al., 2017).
The Problem-Solving Approach
My mom has dementia and my sister and I take turns staying with her at her home. She used to get really agitated and angry in the evening—we blamed this on her dementia. We finally figured out that she gets cold—even when it’s warm outside. She doesn’t tell us, 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!
Family Caregiver, West Palm Beach, Florida
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.
Dementia-care mapping (DCM) is a problem-solving approach based on the idea that many of the ills that people with dementia experience are due to negative environmental influences, including staff attitudes and care practices (van de Ven et al., 2014).
Dementia-care mapping consists of three components: (1) systematic observation, (2) feedback to the staff, and (3) action plans. The action plans are developed by the nursing staff and are based on the observation of the actual needs of the clients. This method allows for initiation of interventions at the individual level and the group level, as well as at the levels of management and organization. In short, dementia-care mapping is an approach aimed at implementing diverse interventions to improve the quality and effectiveness of care (van de Ven et al., 2014).
Dealing with Challenging Behaviors
Among many challenging behaviors associated with Alzheimer’s disease and related dementias, three stand out: 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.
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). Before deciding on a course of action, a risk assessment, comprehensive assessment, and a determination of reversible cause or factors should be completed.
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, 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 are 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).
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 of 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 residents’ 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.
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.
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.
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).
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
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?” “What will make you feel 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
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 non-pharmacologic 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)
Alternatives to Physical and Chemical Restraints
The Omnibus Budget Reconciliation Act of 1987 (OBRA 87) established a resident’s right to be free of physical or chemical restraints in nursing homes when used for the purpose of discipline or convenience and when not required to treat the resident’s medical symptoms. Uncooperativeness, restlessness, wandering, or unsociability are not sufficient reasons to justify the use of a restraint (GovTrack, 2020).
Use of restraints should be:
- Reserved for documented indications
- Time limited
- Frequently re-evaluated for their indications, effectiveness, and side effects in each patient (GovTrack, 2020)
Florida Nursing Home Bill of Rights
In most states the use of physical and chemical restraints on nursing home patients is illegal. In Florida, the Nursing Home Bill of Rights states that a nursing home resident has
. . . the right to be free from mental and physical abuse, corporal punishment, extended involuntary seclusion, and from physical and chemical restraints, except those restraints authorized in writing by a physician for a specified and limited period of time or as are necessitated by an emergency. In case of an emergency, restraint may be applied only by a qualified licensed nurse who shall set forth in writing the circumstances requiring the use of restraint, and, in the case of use of a chemical restraint, a physician shall be consulted immediately thereafter. Restraints may not be used in lieu of staff supervision or merely for staff convenience, for punishment, or for reasons other than resident protection or safety (Florida Statutes, 2020).
A physical restraint is defined by the Centers for Medicare and Medicaid Services (CMS) as “any manual method, physical or mechanical device, material, or equipment attached to or adjacent to the resident’s body that the individual cannot remove easily which restricts freedom of movement or normal access to one’s body.” Physical restraints can include belts, mittens, vests, bedrails, geriatric chairs, and other devices (Staggs et al., 2016).
Use of physical restraints has come under intense scrutiny because they can cause agitation, confusion, deconditioning, pressure ulcers, strangulation, adverse psychological effects, and even death. They affect a person’s sense of well-being, causing feelings of low self-worth, depression, humiliation, and anger.
Because of these potentially serious consequences, physical restraint use is part of public reporting for nursing homes through the CMS Nursing Home Compare website (Staggs et al., 2016). Several studies have demonstrated that carefully orchestrated restraint-reduction programming can greatly reduce the use of physical restraining devices (Lai et al., 2011).
Restraints are not limited just to physical devices. Restraint can include using (or threatening) force or restricting their movements—even if they do not resist (Nuffield Council on Bioethics, 2009 latest available).
The use of physical restraints creates an ethical dilemma by limiting a person’s autonomy. Their use is associated with increased instances of falling, the development of hospital-associated infections, incontinence, and cognitive decline. Restraints also increase dependency in activities of daily living and walking (Lai et al., 2011).
Regular interaction with caregivers in an adult daycare setting provides the opportunity to educate family members about the use of restraints in the home. Current evidence indicates that restraints are regularly used in home care; that they are mainly applied to vulnerable older persons; and that informal caregivers, who have less knowledge of the negative consequences of restraint use, play an important role in the application of restraints, by granting permission for the use of restraints and deciding to use restraints (Scheepmans et al., 2020).
Nurses also play a pivotal role in the use of restraints. Recent studies suggest they have insufficient knowledge of the concept of restraints, the frequency of their use in clinical practice, and the negative impact on the client (Scheepmans et al., 2020).
A chemical restraint is the intentional use of any medications to subdue, sedate, or restrain an individual. Traditionally they have been used to restrict the freedom of movement of a patient—usually in acute, emergency, or psychiatric settings. Chemical restraints are typically prescribed for the shortest time possible for dangerous, uncontrolled, aggressive, or violent behaviors.
In older adults with dementia, psychotropic agents such as anti-anxiety, antidepressant, and antipsychotic medications are often used to treat the behavioral and psychological symptoms associated with dementia. These medications, which affect mood, perception, consciousness, cognition, and behavior can become a chemical restraint if used improperly and are often overused as a means of behavioral control in older adults with dementia (Peisah & Skladzien, 2014).
Atypical antipsychotics were approved by Food and Drug Administration (FDA) in the 1990s exclusively for the treatment of schizophrenia. Soon after, these medications became the new standard of care for behavioral and psychological symptoms of dementia.
In the older adult population, the largest number of prescriptions for atypical antipsychotics is written for delusions, depression, and agitation. Although neuropsychiatric symptoms affect up to 97% of people with dementia at some point during the course of their disease, it is important to note that no atypical antipsychotic is FDA-approved for the treatment of any neuropsychiatric symptoms in dementia (Steinberg & Lyketsos, 2012).
Several large clinical trials have consistently demonstrated an increased risk of mortality with the use of atypical antipsychotics in people with dementia. All atypical antipsychotics now carry a black box warning from the FDA about this risk, and a similar warning applies to conventional antipsychotics. Atypical antipsychotics are also linked to a two- to threefold higher risk of cerebrovascular events (Steinberg & Lyketsos, 2012).
The 2012 American Geriatric Society (AGS) Beers consensus criteria for safe medication use in elders recommend avoiding antipsychotics for treatment of neuropsychiatric symptoms of dementia due to the increased mortality and cerebrovascular events risk “unless nonpharmacologic options have failed and the patient is a threat to self or others” (Steinberg & Lyketsos, 2012).
In 2015, the American Psychiatric Association published practice guidelines on the use of antipsychotics to treat agitation or psychosis in people with dementia. Expert consensus suggests that use of an antipsychotic medication in individuals with dementia can be appropriate, particularly in individuals with dangerous agitation or psychosis, and can minimize the risk of violence, reduce patient distress, improve patient’s quality of life, and reduce caregiver burden (Reus, Fochtmann, Eyler et al., 2016).
In clinical trials, however, the benefits of antipsychotic medications are at best small whether assessed through placebo-controlled trials, head-to-head comparison trials, or discontinuation trials. There is also consistent evidence that antipsychotics are associated with clinically significant adverse effects, including mortality (Reus, Fochtmann, Eyler et al., 2016).
Key points about the benefits and risks of antipsychotic use include:
- Nonemergency antipsychotic medication should only be used for the treatment of agitation or psychosis in patients with dementia when symptoms are severe, dangerous, and/or cause significant distress to the patient.
- Clinical response to nonpharmacological interventions should be assessed prior to non-emergency use of an antipsychotic medication to treat agitation or psychosis.
- Potential risks and benefits should be assessed by the clinician and discussed with the patient as well as with family or others involved with the patient. (Reus, Fochtmann, Eyler et al., 2016)
A prescriber may choose to prescribe antipsychotic medications for behavioral and psychological symptoms associated with dementia and they may be effective in some cases. The prescriber must, however, disclose to the patient or family that the medication is being used off-label* and obtain permission to use it for behavioral symptoms.
*Off-label use is the practice of prescribing pharmaceuticals for an unapproved indication, age group, dose, or form of administration.
Alternatives to Restraints
Many attempts have been made to reduce restraint use in clinical practice. Most interventions have used educational approaches, aiming to improve nursing staff knowledge and confidence to avoid physical restraints and to use alternative measures that target the resident’s underlying problems (Gulpers et al., 2010).
In a small Dutch study involving 30 residents, education, institutional changes, and alternative interventions resulted in a significant reduction in the use of belt restraints. Belts were replaced with resident-centered interventions such as movement and balance training, lower beds, hip protectors, extra supervision, and monitoring devices (video camera, sensor mat, and infrared alarm systems) (Gulpers et al., 2010).
Other strategies have been used as an alternative to physical restraints. Reducing clutter, keeping hallways free of equipment and obstacles, and liberal use of rails, grab bars, and transfer poles in rooms, bathrooms, hallways, and common areas is recommended. A friendly, uncluttered, home-like environment provides a safe and effective alternative to physical restraints. Other suggestions related to the environment:
- Redesign the location of nursing stations so they are part of a home-like design.
- Provide pressure-relief wheelchair and chair cushions to improve comfort.
- Lower wheelchairs to allow self-propelling with feet.
- Provide comfortable, easy-to-access alternative seating.
- Install carpeting to reduce injury from falls.
Psychosocial policies and activities can also assist in reducing or eliminating the use of restraints. Establishing a routine, including a toileting schedule, will improve comfort and reduce anxiety. Regular exercise and comfortable places to rest and nap are important. Other psychosocial suggestions:
- Assess and treat hunger, thirst, and discomfort.
- Change medications or taper medications with adverse effects.
- Treat all underlying causes, including pain.
- Assess hearing and vision.
- Establish a nap schedule.
- Relieve impaction.