Florida: Specialized Alzheimer’s Adult Daycare, Level One (347)Page 5 of 13

4. Managing Challenging Behaviors

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, latest available).

Challenging behaviors are best managed when interventions are tailored to each person. This can include psychosocial interventions and short-term pharmacologic treatment (only when necessary). Before deciding on a course of action, a comprehensive assessment, and a determination of reversible causes of a challenging behavior should be completed.

4.1 The Problem-Solving Approach

My mom has dementia and me and my sister 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. This approach helps caregivers, family members, and healthcare workers 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 problem-solving approach is particularly effective when successful strategies are shared by staff, caregivers, and family members. This helps staff and caregivers understand when and how often a behavior occurs and offers the opportunity for discussion and planning.

Conditions other than dementia can be the cause of a challenging behavior and some of these conditions are reversible with appropriate treatment. Acute conditions such as constipation, dehydration, urinary tract infections, skin breakdown, head injuries, epileptic seizures, and the side effects of medications or medication interactions can cause temporary changes in a person’s cognition and affect their behavior (NINDS, 2023, December 19).

4.2 Managing Common Behaviors

The management of challenging behaviors in people with dementia requires a thoughtful and consistent approach. Among the 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. In addition to aggression, agitation, and wandering, delirium and depression, rummaging, hoarding, delusions, hallucinations (psychoses), and sleep disturbances will be discussed here. This is by no means an exhaustive list and other challenging behaviors are sure to occur.

4.2.1 Delirium and Depression

Delirium and depression are 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, dehydration, infection, stress, and metabolic changes. An unfamiliar environment, injury, or severe pain can also trigger an episode of delirium.

When a person with dementia is admitted to the hospital or finds themselves in an unfamiliar environment, precipitating factors for delirium include multiple medications started during the admission, use of centrally active medications*, use of physical restraints, bladder catheterization, elevated serum urea or elevated blood urea nitrogen to creatinine ratio**, and adverse events during the hospitalization (Faeder et al., 2023).

*Centrally active medications: medicines that lower heart rate and reduce blood pressure.
**Elevated serum urea or elevated blood urea nitrogen to creatinine ratio: an indication that the kidneys are not functioning properly.

Management of delirium starts with prevention. Identifying risk factors, especially in older adults with dementia can significantly decrease its incidence. Following hospitalization or surgery, reorientation, early mobilization, hydration, nutrition, sleep, and hearing and/or vision adaptation has been shown to reduce episodes of delirium in older adults (Faeder et al., 2023).

About 16% of people with dementia have a diagnosis of a major depressive disorder and many experience symptoms of depression without a formal diagnosis (Watt et al., 2021). Low energy, irritability, sadness, socially isolation, anxiety, “empty” mood, feelings of hopelessness, guilt, worthlessness, or helplessness can be signs of depression. Depression can lead to difficulty concentrating, remembering, or making decisions, difficulty sleeping, poor appetite, early-morning awakening, or oversleeping (NIA, 2021, July 7).

Drugs such as antidepressants and antipsychotics and non-drug treatments such as reminiscence therapy and exercise can be used to treat depression in people with dementia. There is increasing evidence of harm associated with antidepressant use in people with dementia, particularly from falls and fractures. Non-drug interventions such as social prescribing—linking patients with non-drug interventions in their community—can combat symptoms of depression, loneliness, and isolation (Watt et al., 2021).

4.2.2 Agitation and Aggression

Agitation is a general term that includes physically aggressive behaviors, including hitting, grabbing, kicking, and pushing. Agitation also includes physically non-aggressive behaviors (pacing, restlessness), verbally aggressive behaviors (swearing, threats) and verbally non-aggressive behaviors (requests for attention, complaining, negativism, ceaseless talking, groaning) (James et al., 2023).

Aggression is often seen as a threat to the safety of the person with dementia and to those around them, including family caregivers, staff, and other residents. Aggressive behaviors occur in both men and women, but overt aggression is more common in men.

Agitated and aggressive behaviors are almost always related to loss of control, physical discomfort, a 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.

To understand and prevent agitation and aggression, use the problem-solving approach to consider the antecedent (cause) of the behavior:

  • Observe the person and try to identify the behavior.
  • Look for patterns and consequences.

Psychosocial and environmental interventions can reduce or eliminate agitated or aggressive behaviors. Touch*, music therapy, massage, craniosacral therapy**, therapeutic touch, acupressure, and tactile massage have been used to treat aggression. Individual behavioral therapy and individualized, person-centered care based on psychosocial management is recommended (Burns et al., 2012, latest available).

*Touch: When using touch as a strategy, it is important to consider religious, ethnic, and personal preferences as well as professional and ethical standards.
**Craniosacral therapy: a hands-on technique that uses soft touch to release restrictions in the soft tissue surrounding the central nervous system.

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 fractures, diabetes, and stroke (Jordan et al., 2014).

4.2.3 Wandering

Wandering is when someone walks aimlessly around a facility or home or away from a particular location. Individuals who wander often become lost, putting them at risk of injury and death. More than half of people with dementia may wander at some point during the course of their disease. For caregivers and family members, wandering is extremely stressful because of safety concerns and the seeming inability to stop the behavior short of using a restraint.

Wandering is often related to boredom, pain, discomfort, disorientation, and memory problems. Someone with Alzheimer’s disease is more likely to wander than a person diagnosed with another type of dementia, and it is more prevalent in men and in younger people with dementia. Of particular interest, a person with AD will often wanders in the direction of their dominant hand.

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. Restlessness, with a compelling need for movement or pacing, has been linked to side effects of psychotropic medications, particularly antipsychotics.

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. This includes people who respond to stress by engaging in motor activities and people who have been physically active throughout their lives. Additionally, a person with an active interest in music, an extroverted personality showing warmth, positive emotion, altruism, and those who were very involved with social activities and social-seeking behaviors may be more likely to wander (Adekoya and Guse, 2019).

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. Redirecting a person to a purposeful activity, offering safe, looping wandering paths with interesting rest areas, and providing regular exercise allows caregivers to address wandering in a positive way. Using a physical barrier (such as yellow tape) can prevent wandering into unsupervised areas. Putting up visual barriers on exit doors, such as “Stop” signs, and installing alarms on entryways into unsafe areas or to the outside can also be helpful.

Engaging a person in simple chores such as folding laundry or assisting with dinner can give them a sense of purpose and fulfillment. Electronic devices attached to the person’s ankle or wrist alert staff or family members when someone has wandered out of a designated area. 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.

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).

4.2.4 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 to be a type of obsessive-compulsive behavior. Rummaging and hoarding are not necessarily dangerous or unsafe, but they can be frustrating for caregivers and family members. 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 they have misplaced. They may have a fear of being robbed or feel a need to protect their possessions. Confusion can lead to rummaging through another person’s belongings, which can be particularly frustrating for other clients.

To address rummaging and hoarding behaviors, use the problem-solving technique to determine what triggers or causes the behavior and look at consequences, if any. Look for patterns and learn the person’s hiding places. 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 or hoarding.

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:

  • Get rid of poisonous items such as caustic liquids and poisonous plants.
  • Label cabinets, doors, and closets.
  • Use labels or pictures to help the person find what they are looking for.
  • Reduce clutter.
  • Check garbage for missing items.

4.2.5 Psychosis

Psychosis is a disturbance in the perception or appreciation of objective reality. Symptoms can include delusions, visual and auditory hallucinations, and paranoia, among others.

Psychosis is relatively common in people with Alzheimer’s disease and other types of dementia. Its prevalence varies depending on the underlying disease, with an overall prevalence of approximately 30% in Alzheimer’s disease, 75% in dementia with Lewy bodies, 50% in Parkinson’s disease, 15% in vascular dementia, and 10% in frontotemporal dementia (Cummings et al., 2020).

Psychosis can be triggered by medical conditions, pain, physical discomfort, urinary tract infection, constipation, delirium, and polypharmacy. Overstimulation, poor lighting, sensory overload, social isolation, premorbid personality, and poor coping mechanisms are also factors (Cummings et al., 2020). Changes in the brain 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 people with Lewy body dementia. For a person with new onset of visual hallucinations, the number one cause is medication side effects. For this reason, all medications should be carefully reviewed. This includes prescription and over-the-counter medications, as well as herbal supplements.

Management of delusions and hallucinations starts with ruling out delirium or other physical or medical reasons for a person’s behavior. During the process of attempting to identify the cause of a behavior—especially paranoia and delusions, determine if the claims by the person with dementia actually did occur.

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 control. For example, you may ask “What will make you feel safe?” “What will make you feel comfortable?”

When communicating with someone who is experiencing hallucinations, paranoia, or delusions, realize that even if their complaint is not true, it is very real for that person. Do not to argue; simply explaining the truth of the situation does not work. Do not agree with the person or further validate the paranoia or delusion; try to respond to the person’s emotion.

Here are some 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.

4.2.6 Sleep Disturbances

For people with dementia, sleep disturbances can lead to worsening of cognitive symptoms, challenging behaviors, restlessness, wandering, and accidental falls. Sleep disturbances also cause significant caregiver distress and have been reported as a factor contributing to institutionalization of people with dementia (Wilfling et al., 2023).

There is an inaccurate belief 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 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).

Sleep disturbances and accompanying symptoms often lead providers to prescribe psychoactive medications, including hypnotics. Because little research has been done on sleep disorders in people with dementia, it is not known if these medications improve sleep. Non‐medicine interventions are frequently recommended such as light therapy, social and physical activities, changes of the environment—such as reducing noise and light at night—and avoiding daytime sleep (Wilfling et al., 2023).

A Cochrane Review of interventions for disordered sleep affecting people with dementia did not draw firm conclusions, mostly due to differences between interventions and lack of methodological quality. Physical activity and social activities, caregiver interventions, and multimodal interventions may slightly or modestly improve night‐time sleep in people with dementia. The review found no evidence that light therapy, slow‐stroke back massage, or transcranial electrostimulation reduced sleep problems in people with dementia (Wilfling et al., 2023).

4.2.7 Sundown Syndrome

Sundown syndrome is the emergence or worsening of neuropsychiatric symptoms in the late afternoon or early evening. It has long been recognized as an aspect of dementia and is well known among most of healthcare providers involved in the care of persons with dementia. Nevertheless, sundown syndrome has so far drawn limited clinical and scientific interest compared to other neuropsychiatric symptoms and behavioral disturbances occurring in dementias such as apathy, depression, and psychotic symptoms (Canevelli et al., 2016).

The term “sundowning” was first used in the early 1940s to describe an increase in disorientation and agitation in a dementia patient placed in a darkened room (Madden and Feldman, 2019). It was believed then that low light levels were the major cause of this phenomenon, and that changes in behavior were caused by the reduced levels of light at sunset (Guu et al., 2022).

Although the concept of a sundowning syndrome remains in common use, it is poorly defined. Recent research has focused on dysregulation of circadian biology and changes in circadian rhythm* related to reduced light and that mood, sleep, and aggressive behaviors might be regulated by the circadian system (Guu et al., 2022).

*Circadian rhythms: the physical, mental, and behavioral changes experienced over a 24-hour cycle. Light and dark have the biggest influence on circadian rhythms, but food intake, stress, physical activity, social environment, and temperature also affect them.

Caregiver fatigue and stress may contribute to sundowning in people with dementia. Researchers have noted that sundown syndrome behaviors are higher at the end of weekends, in less sunny states, in states at higher latitudes, and during winter months. These results provide support for both the caregiver stress and disrupted circadian rhythm hypotheses for sundown syndrome behaviors (Madden and Feldman, 2019).

The diagnosis of sundowning is essentially clinical in nature. In most of cases, it is easily identified by direct observation or interviews with caregivers. History taking should be followed by a general physical examination to determine the presence of potentially contributing or precipitating factors such as pain or sensory deprivation. An evaluation of potential environmental factors such as lighting, noise levels, and changes in daily routine important. Illness, injury, or disease caused by medical or surgical treatments, diagnostic procedures, or side-effects of a drug should also be considered (Canevelli et al., 2016).