Management of Behavior Problems
(Carlson DL, Fleming KC, Smith GE, Evans JM. Management of Dementia-Related Behavioral Disturbances: A Nonpharmacologic Approach)
with permission from Mayo Clinic Proceedings 1995; 70:1108-1115.
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The diagnosis of dementia is largely predicated on the presence of cognitive impairment. The syndrome of dementia, however, includes a broad range of behavioral disturbances, sometimes referred to as "noncognitive" problems. Many of these behaviors, however, result from the progressive inability to remember, reason and solve problems. Behavioral problems associated with dementia include agitation and aggression, resisting help with cares, wandering, incontinence, sleep disturbances and emotional lability, among others. These behavioral disturbances are often frustrating,disruptive, and significantly impact on quality of life, caregiver stress, and the need for institutionalization. These behaviors frequently become the primary focus of contacts between health care professionals, patients and their caregivers. Understanding the basis for these behaviors, recognizing the full range of management options and being aware of the resources available may assist patients and their families through the course of this disease.
Many behavioral disturbances in dementia are not directly related to progressive cognitive decline, but occur in excess of expectations given the disease severity and duration. Behavioral problems or functional impairments occurring out of proportion to the degree of cognitive impairment represent a gap between actual and potential function. This extra behavioral or functional disturbance has been termed "excess disability." Excess disability in dementia may be attributed to health, psychological, environmental or social factors. These added deficits, when recognized, may be eliminated, modified, or prevented.
It is estimated that approximately 50% of patients with dementia have at least one co-existing medical illness. Approximately one-fourth of such patients will experience at least transient improvement of behavior and cognition with treatment of the underlying disorder. In many cases this improvement is sustained. A behavioral disturbance, a sudden decline in functional status, or the worsening of confusion may be the initial manifestation of a physical illness in patients with dementia. Pain, dehydration, infection, heart failure, infections, COPD, drug toxicity, constipation, hunger, fatigue, and head trauma are common diagnoses to consider.
Hearing and vision impairments can increase the sense of isolation experienced by demented patients. These sensory losses may contribute to misperceptions of the environment resulting in illusions or hallucinations and associated behavioral disruptions. Hearing aids or hand-held amplifiers may improve communication ability between patient and caregiver. Visual aids and eyeglasses can reduce some perceptual distortions. Astute caregivers can use adaptive equipment during times of greatest need (e.g. assisting with grooming) if their use is otherwise resisted.
Role of Medications
Psychotropic medications used in the management of behavioral problems in dementia may paradoxically exacerbate these behaviors and can cause further cognitive or functional impairments. This may lead to a vicious cycle of increasing dosages based on increasing disturbances. In addition, drug side effects can result in anorexia, agitation, sedation and falls. Medications used to treat underlying nondementing medical conditions can also result in secondary behavioral effects. These behaviors can occur as direct effects of the medications used or from resultant changes in the subject's underlying health status. Virtually any medication adjustment (addition, withdrawal or change in dose) may have direct behavioral effects.
Anxiety is reported to affect up to 40 percent of subjects with dementia. The prevalence increases with advancing age and is also higher among nursing home residents. In adults with established dementia, anxiety often manifests as excessive anticipatory concern regarding upcoming events, or by behaviors such as wandering, screaming, or aggression. Various factors may play a role in the development of anxiety in demented patients, including medical illness, depression, abuse, social losses, cognitive impairment, and functional decline.
Depression is common among demented patients, with somewhat higher rates among many non-AD dementias than in AD (e.g. vascular dementia, Huntington's disease, and Parkinsonism). Noradrenergic and serotonergic neurotransmitter deficits, in addition to frontal lobe and limbic structural changes, correlate with the occurence of depression in AD. Depressive symptoms reportedly occur in up to 50 percent of AD, which is three to four times more frequent than in nondemented elderly patients. Depression may present as worsening cognitive impairment, social withdrawal, weight loss, behavioral disruption, and functional decline. Tearfulness, thoughts of worthlessness, and concerns about being a burden are common. Depressed mood in demented patients may be more amenable to behavioral approaches such as distraction or changes in environmental stimuli. Although the rate of suicide is highest among the elderly, suicide is rare among patients with dementia.
Feelings of stress, discouragement, resignation, and frustration resulting from progressive losses are further sources of excess disability in patients with dementia. Caregivers can help to minimize this by structuring patient tasks in ways that reduce the likelihod of failure and increase the opportunity for success. One must keep in mind the often variable capacity of a patient to perform certain functions successfully.
Environmental factors such as understimulation and overstimulation can lead to the development of undesirable behaviors. With nothing to do, a patient may become bored or restless and begin to wander or become involved in self-stimulating behaviors such as repeatedly yelling or calling out to caregivers. Multiple, simultaneous or unnecessary stimuli may be difficult to interpret and can overwhelm the patient. Loud and repeatedly heard nursing home buzzers may be annoying and lead to agitation. Television shows may be misunderstood or mistaken for reality and cause demented subjects to become frightened or angry, resulting in cries of alarm or enraged behavior. "Disembodied" voices coming from radios or overhead paging systems, or that result from whispering or laughing out of view, can similarly contribute to confusion, suspiciousness, and agitation.
Lack of familiar cues or personal effects in the environment can result in greater confusion, fear and agitation. Environments can be modified to compensate for sensory losses by reducing glare, increasing lighting, removing rugs and cords on the floor and using contrasting colors. A simple, consistent, and predictable environment provides a sense of familiarity and comfort for the patient. Conversely, an environment poorly adapted to cognitive losses may cause the individual to misinterpret surroundings and events, and either behave in socially inappropriate ways or withdraw.
In spite of progressive cognitive loss, older adults with dementia retain basic human needs to belong, to be loved, and to feel useful. However, quality relationships and social groups appropriate to their need and level of functioning.are often unavailable or insufficient. Adapting normal household duties or "chores" to the patient's level of ability can address the desire to contribute and feel needed. Planned activities should promote a sense of success (by not exceeding the ability of the patient to perform without failure), and should correspond to individual interests, abilities, and reduced attention spans whenever possible. Promoting existing abilities serves to reinforce the familiar, provide reassurance through daily rituals, and contribute to a sense of competency.
Caregivers can contribute to excess disability by a reinforcement structure that rewards dependent behavior (by more attention) and ignores independent behavior. Caregivers may foster dependence and loss of function if patients are not allowed or encouraged to participate in personal cares appropriate to their abilities (e.g. dressing a demented patient in order to save time). When patients with dementia do not continue to exercise even over-learned or habituated skills, these abilities can be lost. This may increase dependence on others prematurely, and reinforce a sense of helplessness and failure.
Behavior as Communication
Reconceptualization of behavior in dementia involves the ability to see behavior as a means of communication. In dementia, reasoning and language skills are gradually lost and communication becomes more overtly behavioral. Even when speech is intact, it is often limited by difficulties in forming and expressing the desired thoughts correctly. The behaviors of individuals with dementia represent an attempt to express feelings and needs that cannot be adequately verbalized. In a young child, crying out is a means of communicating hunger, pain or fear is not considered a "behavior problem." A demented adult may have comparable limitations in language and reasoning, and have similar behavioral responses. Labelling of unwanted behaviors (and patients) as "bad" or "difficult" often creates a set of expectations that foster a sense of futility or resignation. However, troublesome behaviors are rarely enacted purposefully or to be manipulative, but arise from the disease process and the more primitive (or childlike) coping styles that result.
Caregivers can waste a tremendous amount of effort attempting to "teach" new information to patients who cannot learn, arguing about realities that differ, or "reasoning" with patients who can no longer reason. It is essential that behaviors be recognized as a form of communication, rather than as random, unpredictable, or meaningless events. Caregivers who learn what to expect as the disease progresses can anticipate the limitations to come and their behavioral effects. Management of problem behaviors can then shift in focus from trying to change the patient to modifying causative or exacerbating factors.
Examples of Behavior Problems *click for a list of symptoms & behaviors*
Often considered to be a behavior problem, wandering is defined as moving about in an apparently aimless or disoriented manner. As a means of communication, wandering may indicate boredom, the need to exit a stressful situation, or a search for something familiar and comforting. In this context, wandering may be considered functionally adaptive, rather than maladaptive. Wandering may reflect lifelong patterns of coping with stress, the need to keep busy, or a search for security. However, wandering may also reflect the need to find the bathroom, a person, or a lost object, or represent efforts to "go home" or "go to work".
Interventions to manage wandering should be guided by asking what the behavior may be communicating about past patterns or present needs. The answer may differ from day to day for some patients, and their general mood may provide the key to interpreting the behavior. Sometimes, however, no answer is apparent. As long as patient safety is not compromised, wandering might be allowed to occur. The associated benefits of exercise and tension release from unrestricted wandering should be considered as well. Caregivers might attempt to reduce wandering by providing meaningful activities and familiar objects, or planning regular exercise. When wandering becomes a safety issue, more restrictive environmental adaptations may be needed. In institutional settings, alarm systems, stop signs, concealed or camouflaged doors and door knobs, and locks placed in unfamiliar places can be useful. A secured indoor or outdoor circular path can reduce concerns about escape or intrusiveness, although an identification bracelet or necklace and an updated photograph of the patient are recommended.
Agitation occurs in more than half of community-dwelling patients with dementia, and affects up to 70 percent of nursing home residents. Agitation may be a behavioral manifestation of anxiety, but may also be a final common pathway of expression for myriad symptoms in a dementia patient with progressively limited responses. The neurobiologic basis for these behaviors is unclear, but is thought to involve serotonin depletion. Some authors have suggested that agitated and aggressive behaviors become more common with increasing severity of dementia, while others have found no such correlation. Nevertheless, these behaviors are key in determining the need for nursing home placement, regardless of the severity of cognitive impairment. Dementia patients with uncontrolled agitation or wandering are more difficult to care for than subjects without behavioral disruptions. As a result, they receive more psychoactive drugs, and are institutionalized sooner.
Repeated questioning, threatening verbalizations or gestures, resisting cares (e.g. bathing), excess motor activity and numerous other behaviors are collectively referred to as "agitation". Yet these behaviors may have different antecedents or triggers, and may be communicating different needs. Agitation may be a means of communicating pain or discomfort, a reaction to tasks which exceed capabilities, or a response to a threatening environment. Physical aggression often occurs as a defensive response to unwanted touch or as a reaction to a perceived threat, rather than as a manifestation of anger. Similarly, screaming is related to aggressive behaviors and may arise as a response to social isolation. Because the basic message is distress, intervention is necessary. Potential antecedents of the behavior should be addressed. Reducing excess noise and stimulation, providing meaningful activity, and simplifying or structuring a routine to provide familiarity are effective strategies.
The antecedent to agitated behavior may be an impatient and irritable caregiver who is trying to get the patient to complete a task, and is meeting resistance. In situations like this, it is best that the caregiver back off and return later, recognizing that one's affect can impact patient behavior. Some behaviors, at first merely a nuisance, may become annoying or irritating (e.g. repetitive questioning, pacing). Patient and caregiver agendas may differ significantly, causing conflict when the need to be in control may be an issue for both individuals. In these instances, it may be best for caregivers to "choose their battles," and avoid potential conflict if the issue of little importance. Patience, reassurance and increased tolerance may be the best initial strategy. It may be useful to remind caregivers that the demented patient is not trying to aggravate or manipulate them. Furthermore, scolding the patient for repeated questions may only serve to highlight the cognitive loss and sense of failure, precipitating fearfulness, suspicion, anxiety or anger.
An increase in agitation and confusion late in the afternoon or early in the evening is often described as "sundowning". Fatigue and stress likely contribute to this syndrome, although it is a nonspecific occurence that may reflect a wide variety of causes, especially in the hospitalized patient. Lowering expectations and reducing stimulation, while increasing security and comfort as the day progresses is warranted. However, an abrupt change in behavior may represent an acute illness causing dyspnea, discomfort, or a state of delirium and consequent agitation (e.g. urinary infection, myocardial infarction, constipation). Medication side effects, drug withdrawal states, and cumulative toxicity may result in agitation (e.g. digoxin, anticholinergic drugs, benzodiazepines). Caffeine and alcohol should be avoided in demented patients due to unwanted behavioral effects. Poor sleep, sensory deprivation, and changes in the environment (frequent conditions for the hospitalized dementia patient) are other possible triggers for agitation.
Changes in sleep patterns occur with normal aging. Less time is spent in deeper levels of sleep and nighttime awakening is common. Sleep is further disrupted in dementia, and may come to resemble the sleep patterns found in newborns and younger children. Daytime naps, difficulty falling asleep, frequent awakenings, and day-night reversal affect 45 to 69 % of patients with dementia, and can be a major problem for caregivers. Concerns about nightime wandering, injury, and safety can severely affect the sleep of caregivers, prompting institutionalization for some patients.
A number of measures can be taken to improve sleep in demented patients. Daily exercise and scheduled activities can replace afternoon naps and improve nightime sleep, but may increase agitation in those patients who become fatigued during the day. Mid-day rest periods could be spent in a recliner (rather than a bed) to reduce daytime sleeping. Caffeine should be avoided late in the day, and limited to a single morning dose. In agitated patients, caffeine should be avoided entirely. Toileting before bedtime and limiting evening fluids may reduce nocturnal awakening to void. Delaying the time for bed an hour or so may decrease early wakening in some patients. A calm reduction in evening activities and a reinforcing bedtime routine (warm milk, a snack, massage, soothing conversation or music) may facilitate sleep initiation. For some patients, allowing nightime wandering in a supervised setting may be less harmful than use of a sleep-inducing agent. The use of a room monitor can warn the caregiver when the patient is up and limit the need to be on the alert.
Many medications, including sedatives, anticholinergics, sympathomimetics, diuretics, and alcohol may exacerbate sleep disturbances. Benzodiazepines and anticholinergic drugs should be avoided as therapy for sleep disorders in dementia patients. These medications are associated with increased cognitive impairment, medication tolerance, falls , and prolonged sedation. Small doses of trazodone or chloral hydrate may be beneficial in some cases, as can the sedating side effects of neuroleptics or antidepressants (when used for treating other conditions). Finally, sleep disorders may be related to underlying depression or anxiety, which can respond to appropriate therapy.
Delusions and Hallucinations
Delusions are reported to occur in 30 to 57 percent of patients with AD, and may be related to acetylcholine deficiency and relative dopaminergic preservation in the limbic system. Late-life delusions are often associated with social isolation, hearing impairment, and cerbrovascular lesions, particularly those involving subcortical structures and the limbic system. Delusions are most frequent in middle to later AD, but can occur at any stage and may be the presenting manifestation of a degenerative dementia. Patients with delusions have a more rapid decline in cognitive function than those without, although survival is apparently unaffected. Delusional patients have more behavioral disruptions than nondelusional subjects, with increased wandering, anxiety, aggression, and agitation. As a result, institutionalization for behavior problems is much more common in demented patients with delusions than in nondelusional subjects (54% vs 15%).
Hallucinations and illusions occur in 10 to 28% of patients with AD. Visual hallucinations are most common, often involving people or animals. Auditory hallucinations also occur, with symptoms ranging from sensations of vague noises to the hearing of voices. Olfactory hallucinations are uncommon. Underlying vision and hearing disorders may predispose to sensory hallucinations. In demented patients, a thorough examination of vision and hearing is therefore important in order to remedy potential contributing factors. External stimuli (such as a television) can sometimes be misinterpreted by demented patients. Patients may either recognize hallucinations as false or consider them real. Before considering treatment, physicians must decide whether these symptoms are actually bothersome or harmful to the patient (e.g. resulting in anxiety, fearfulness or agitation) or whether they are harmless and acceptable.
Education about dementia and related behavioral problems can be invaluable to family members of demented patients, as well as to community and institutional caregivers. The most useful resource for family information, education and referral is the Alzheimer's Association. Caregiving classes, support groups, and information and referral to tangible local resources are provided. Numerous books and pamphlets on practical caregiving strategies are also available . These resources can help meet many of the substantial needs of family caregivers at little cost.
Home Care and Placement
n a growing number of communities, a number of alternatives to nursing home placement exist for the care of demented patients. In-home respite care, companionship and homemaking services provide supplemental resources for home-based care. Adult day care programs (especially if dementia-specific ) can offer meaningful structured activities for patients. These can provide needed socialization, exercise and routine for the demented elderly patient, and allow a well-needed respite for caregivers. At least one-third of community-based dementia patients may not have local caregivers. When safety concerns arise, or when an individual's social support network becomes inadequate for their needs, placement outside of the home may be necessary. Placement appropriate to the needs of the patient can avoid iatrogenic disability. Supervised assisted living environments, such as adult family foster care, "group homes" and community-based residential facilities offer home-like environments where patients can live at their highest functional level. When long term skilled nursing becomes necessary, dementia-specific care units are a valuable resource where available. In utilizing consistent and knowledgeable staff, these units can be more conducive to behavior management strategies.
Although counselling may provide some benefit in the very early stages of dementia, there is no demonstrated role for counselling in treating moderate and severe dementia. The unconditional positive regard present in these therapeutic relationships can create a transient sense of well-being, but memory loss and lack of insight make sustained changes in mood or behavior unlikely. In any event, nonprofessional companionship, involvement in appropriate activities, and music or recreational therapy may provide similar benefits to formal counselling provided by a therapist or psychiatrist.
Behavioral disturbances in dementia need not be unmanageable. Recognizing and responding to the causes of excess disability, understanding behaviors as a form of communication, and having knowledge of available resources for caregivers and patients provides the health care professional with a broader range of management options. The examples of problem behaviors provided here illustrate a nonpharmacologic approach to behavior management. Not all problem behaviors, however, can be tied to recognizable antecedents, nor do they always communicate messages we can understand. In these cases, caregivers should be encouraged to be flexible and creative in problem-solving approaches. What did not work yesterday may work today, and vice versa. When it becomes evident that the patient with dementia is no longer able to solve problems (especially their own behavioral disruptions), physicians and caregivers can more appropriately focus behavior management on strategies that modify underlying health, environmental and psycho-social factors. Appropriate modifications may enhance function, minimize medication use, and assist caregivers in coping with behavior problems. It is essential that behavioral management stategies are tailored to the individual and continually adapted or modified as the disease progresses and the needs change. Education and supportive care throughout the course of the dementing illness allow the patient and family to learn how to cope with the progressive cognitive, behavioral, and functional losses.
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