Although many of the challenging behaviors seen in Alzheimer’s disease and other types of dementia are associated with changes to the brain, other behaviors may be only partly related to dementia. Isolation, loneliness, frustration, constipation, pain, feeling too cold or hot, and boredom can lead to repetitive behaviors such as wandering, rummaging, and hoarding. A person may be over-medicated or be receiving medications with unwanted side effects. It is not uncommon for sleep to be disrupted, particularly with those living in a nursing facility. Many of these things would frustrate anyone—not only a person with dementia.
Wandering or “Walking About”
Wandering is a broad term encompassing a diverse set of behaviors. It 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 generally falls into two categories: goal-directed, in which residents attempt to reach an unobtainable goal (such as going home or to the store), and non-goal-directed, in which the resident wander aimlessly. Wandering patterns vary and can include moving to a specific location, lapping or circling along a path or track, pacing back and forth, or wandering at random. Residents with Alzheimer’s disease are more likely to wander than those diagnosed with other types of dementias.
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).
Causes of Wandering
People 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 people with dementia. Those with frontal-temporal dementia have a greater tendency to pacing and lapping behaviors whereas those with Alzheimer’s disease are more inclined to engage in random locomotion. Wandering in the form of 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 often 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, 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 whether they are likely to wander. Studies have indicated that people with the following characteristics are more likely than others to wander:
- Those with an active physical and mental 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
- 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)
Management of Wandering
Best practice in management of hospitalized older adults with dementia who wander involves:
- Identifying risk for wandering
- Providing appropriate supervision
- Reducing environmental triggers for wandering and
- Using individualized nursing interventions to address the causes of wandering behavior (HIGN, 2012)
Wandering can be a beneficial activity if there are safe places to wander, in and around a facility or home. Management of wandering should include a 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 resident’s rooms, or away from the facility. Additional strategies to manage wandering include:
- Redirecting to a purposeful activity
- Providing safe, looping wandering paths with interesting rest areas
- Providing regular exercise
- Engaging a 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 may discourage a wanderer from exiting a building.
Did You Know . . .
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).
Mrs. Winkler has moderate dementia. A nursing assistant has wheeled her to the activities room and left her there. After about 20 minutes, Mrs. Winkler decides to leave the activities room. She heads down the hall and is stopped several times by staff, all of whom turn her back toward the activities room—usually with a reprimand.
As soon as the staff member is gone, Mrs. Winkler turns around and continues on her way. She stops near the elevator, where she sits for about 10 minutes watching people come and go. Several staff members pass her and sternly tell her not to get on the elevator. Each staff member leaves her in exactly the same place next to the elevator. Finally, when no one is looking, Mrs. Winkler wheels into the elevator. The door closes and the elevator takes off for the ground floor.
Antecedent: Mrs. Winkler is a curious person and always liked walking around the city for exercise. She liked exploring the various neighborhoods. She was never one to sit around doing nothing. Mrs. Winkler can propel herself independently in the wheelchair but is no longer able to think logically or understand the consequences of her decisions. The elevator is interesting and looks like fun. People keep walking by and talking to her although she doesn’t understand or remember what they are saying.
Behavior: The door to the elevator is an interesting visual cue. When a door opens, it is a common reaction to pass through it. The opening door cues Mrs. Winkler to wheel into the elevator. When the door opens on the ground floor, she wheels herself out of the elevator without knowing where she is. Her behavior is consistent with her personality and her previous habits.
Consequence: Once she gets into the elevator, Mrs. Winkler’s inability to think logically puts her at great risk. If she were to exit the elevator next to a door that leads out of the building, she could wander into the street. People not familiar with her may be unaware she has dementia and is unable to exercise good judgment.
Discussion: Mrs. Winkler cannot understand the danger and does not remember the warnings to stay out of the elevator. One solution is to alter the environment. Move Mrs. Winkler to a place where she cannot see or hear the elevator. Try to determine the reason for her wandering. Review medications to make sure wandering is not the result of medication side effects, over-medicating, or drug interactions. People wander out of habit and because they are restless, bored, or, disoriented. Use the following suggestions to keep Mrs. Winkler out of the elevator:
- Redirect her to a purposeful activity.
- Provide a place where she can wander safely.
- Provide her with regular exercise.
- Engage her in simple, meaningful chores.
- Review her medications.
- Attach an electronic device to Mrs. Winkler’s ankle or wrist that alerts caregivers when she has wandered out of a designated area.
- Paint a grid in front of the elevator to discourage her getting into the elevator.
- Place a plastic vertical 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 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, residents, and family members.
Causes of Rummaging and Hoarding
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,” confusion, 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.
Cognitive changes can contribute to the impulse to rummage and hoard. People may obsess about 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.
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 can be picked through. Placing restrictions on rummaging and hoarding can be frustrating for a person who enjoys these activities.
If possible, 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.
I used to work at a large nursing home in an urban area in northern California. One wing of the nursing home faced an alley where homeless people sometimes slept. Unfortunately, the sliding glass doors in rooms 1 through16 opened onto this alley and for some reason the doors were left unlocked day and night. Several residents with dementia began to complain loudly that they were losing things from their rooms. They spent a great deal of time obsessing about the lost items and rummaged all over the place, including in other residents’ rooms looking for lost items. The staff, almost to a person, associated the rummaging and complaints with the residents’ dementia.
After several months of trying everything from activities to antipsychotics, one of the occupational therapists noted during a staff meeting that several doors were ajar when she walked to the grocery store via the alley. She suggested we try locking the sliding glass doors in the residents’ rooms. It turned out that several of the doors didn’t even have locks on them and didn’t even close properly.
The facility fixed the doors and added surveillance cameras in the alley. Sure enough the cameras revealed that someone had been entering the residents’ rooms and stealing items. Once the doors were fixed and locked much of the complaining and rummaging subsided. It turns out, at least in this case, that items really were missing from residents’ rooms.
Registered Nurse, Berkeley, CA
Sleep disturbances are very common among 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.
The symptoms of sleep disruption vary according to the type of dementia and may present with the following features:
- Increased sleep latency (difficulty getting to sleep)
- Nocturnal sleep fragmentation (waking often)
- Increased early-morning awakenings
- Decreased total sleep time
- Decreased sleep efficiency (how much time you are actually asleep)
- Decreased slow-wave and rapid-eye-movement (REM) sleep
- Nocturnal confusion (episodes of delirium or disorientation during sleep)
- Increased daytime napping and excessive daytime sleepiness
- Other behavioral and psychological symptoms such as agitation, verbally disruptive behaviors, hallucinations, and nighttime wandering (Burns et al., 2012)
Causes of Sleep Disturbances
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).
Medications used to treat the psychological and 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).
Management of Sleep Disturbances
Before treating sleep disturbances, look for potentially treatable causes such as pain, hunger and thirst, the need to urinate, infections, adverse drug reactions, and even noise. Some non-pharmacologic treatments that have been used successfully in nursing homes to treat sleep disorders include:
- 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)
Challenging Behaviors and Adverse Drug Events
Older people are susceptible to adverse drug events due to chronic medical conditions, age-related physiologic changes, and polypharmacy. In people with dementia, functional impairment may make them more susceptible to adverse drug events, falls, fractures, and excess sedation. Despite these dangers, population-based research suggests that older people continue to take drugs with an unfavorable risk-to-benefit ratio. Despite guidelines advising against the use of drugs with sedative or anticholinergic properties in people with Alzheimer’s disease, such drugs remain widely used in people with Alzheimer’s disease (Gnjidic et al., 2014).
Among people with Alzheimer’s disease in Europe, 23% used anticholinergic drugs with significant or moderate effects. In people with advanced dementia in institutional care in the United States, 28% used antipsychotics and 54% used antidepressants. Potentially inappropriate drugs, defined using the Beers Criteria,* were used by 20% of older adults with dementia living in the community in the United States (Gnjidic et al., 2014).
*Beers Criteria: In 1991 Beers and colleagues published an expert consensus document that attempted to establish criteria for identifying medications that are inappropriate for use in older adults. The Beers criteria are commonly used to identify “potentially inappropriate medications” for older adults, meaning the risk may outweigh the benefit.
Several studies have emphasized the need to avoid drugs that affect cognition or induce delirium when treating patients with co-existing cognitive impairment. Memory loss, decline in intellectual function, and impaired judgment and language have a negative impact on decision making and often influence treatment adherence. These cognitive changes can also cause communication difficulties, which can affect a person’s ability to report adverse effects. For this reason the use of drugs to treat non-dementia illnesses in older adults with severe cognitive impairment may lead to serious adverse effects, even when clearly beneficial drugs recommended by clinical guidelines are prescribed. These concerns represent barriers to pharmacologic treatment of complex patients with severe cognitive impairment and should be carefully evaluated by prescribing healthcare providers when treating older persons with this dementia (Colloca et al., 2012).
Rejection of Care
Because those with dementia may not understand the need for care, they may not cooperate with the caregiver and may actually actively resist caregiver’s attempts to provide care. If the caregiver persists in trying to provide care, the person with dementia may become combative and may be called “abusive.” In addition, depression may cause “abusive behavior” even in absence of rejection of care (Volicer & van der Steen, 2014).
Rejection of care can include rejecting an evaluation or rejecting specific aspects of care such as blood work, medications, or assistance with activities of daily living. It is not considered rejection of care if a patient’s somnolence prevents the person from swallowing medications nor does it include aggressive behaviors intended to harm others. The prevalence of rejection of care increases with severity of dementia because of increased lack of understanding of caregiver’s intent and may be present in up to 35% of nursing home residents (Volicer & van der Steen, 2014).
Using Restraints to Control Challenging Behaviors
A physical restraint is any device, material, or equipment attached to or near a person’s body that can neither be controlled nor easily removed by the person, and that deliberately prevents or is deliberately intended to prevent a person’s free body movement to a position of choice or a person’s normal access to the body (Lai et al., 2011).
Restraint also includes using (or threatening) force to make a person do something that resists or restricts their movements, whether or not they resist (Nuffield Council on Bioethics, 2009). The prevalence of physical restraint varies from 5% to 56% as reported in existing literature (Lai et al., 2011).
The Omnibus Budget Reconciliation Act of 1987
The Omnibus Budget Reconciliation Act of 1987 (OBRA 87) established a resident’s right to be free of restraints in nursing homes when used for the purpose of discipline or convenience and when not required to treat the resident’s medical symptoms. Related regulations specify that uncooperativeness, restlessness, wandering, or unsociability are not sufficient reasons to justify the use of antipsychotic medications (Agens, 2010).
Use of restraints should be:
- Reserved for documented indications
- Time limited and
- Frequently re-evaluated for their indications, effectiveness, and side effects in each patient (Agens, 2010)
In most states the use of physical and chemical restraints on nursing home patients is illegal.
Types of physical restraints can include vests, straps, wrist ties, splints, mitts, belts, recliners, geri-chairs, lap boards, and bedside rails, among others. Several studies have demonstrated that carefully planned restraint-reduction programming can greatly reduce the use of physical restraining devices (Lai et al., 2011).
The use of physical restraints (including belts) can increase the risk of death or serious injury and can increase the length of a hospital stay. Their use may also indicate a failure to address the real needs of residents and patients. Both prolonged and short periods of physical restraint use are associated with pressure sores, loss of muscle strength and endurance, joint contractures, incontinence, demoralization, humiliation, feelings of low self-worth, depression, aggression, and impaired social functioning (Gulpers et al., 2010).
The use of physical restraints also creates an ethical dilemma by impinging on a person’s autonomy. Their use is associated with increased instances of falling, the development of hospital-associated infections, and cognitive decline. Restraints also increase dependency in activities of daily living and walking (Lai et al., 2011).
Overall, in U.S. nursing homes, physical restraint use has steadily declined to about 1.7%, although antipsychotic use as a chemical restraint is still common, with nearly 25% of residents receiving some sort of antipsychotic medication (CMS, 2013). These statistics do not include side rails and bed rails.
A recent study has raised some troubling issues, indicating that restraint use is higher among black nursing home residents than among whites. The researchers looked at the use of five types of restraints: bed rails, side rails, trunk restraints, bed restraints, and chair restraints. The results indicated that some sort of restraint was used on 50% of black residents but on only 38% of white residents (Cassie & Cassie, 2013). The differences were particularly evident with bed rails, side rails, and trunk restraints.
Reducing Restraints in Clinical Practice
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 thirty 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.
Pain in Those with Cognitive Impairment
The assessment of pain in people with cognitive impairment is a significant challenge. Cognitively impaired patients tend to voice fewer pain complaints but may become agitated or manifest unusual or sudden changes in behavior when they are in pain. Caregivers may have difficulty knowing when these patients are in pain and when they are experiencing pain relief. This makes cognitively impaired patients vulnerable to both under-treatment and over-treatment.
Pain management is a particular challenge for patients with advanced dementia and at the end of life. Although pain is not the main symptom of dementia, people with dementia often have pain because of chronic conditions such as arthritis or from diseases such as urinary tract infections. Pain perception is not diminished in Alzheimer’s disease but may actually be increased. However, pain perception may vary according to the type of dementia; for example, those with frontal-temporal dementia may have an increased pain threshold and pain tolerance (Volicer & van der Steen, 2014).
Detection and diagnosis of pain in residents with advanced dementia is one of the most important factors in their total care. Nurses and other healthcare providers may feel uncertain about pain in residents with dementia, especially if the resident is unable to report when they are in pain. Patients with advanced dementia are less able to respond to pain scales, necessitating the use of observational scales in up to about half of patients. More than half of residents who were dying with advanced dementia experienced pain in the last week of life that was not satisfactorily managed (Volicer & van der Steen, 2014).
Several observational scales for measuring pain in non-communicative patients have been developed. One commonly used scale is the Pain Assessment in Advanced Dementia (PAINAD). It is able to distinguish effect of analgesics and difference between various severities of pain (Volicer & van der Steen, 2014). This tool was developed by a team of clinicians at the E.N. Rogers Memorial VA Hospital in Bedford, Massachusetts and involves the assessment of breathing, negative vocalization, facial expression, body language, and consolability.
Pain Assessment in Advanced Dementia (PAINAD)
Smiling or inexpressive
No need to console
Distracted or reassured by voice or touch
Unable to console,
distract, or reassure
PAINAD Scoring: 1-3 = Mild; 4-6 = Moderate; 7-10 = Severe