APPROACHING THE BEHAVIORALLY DISTURBED DEMENTIA PATIENT
There are several principles important to the assessment and treatment of behavioral disturbances associated with dementia (5
). Behavioral disturbances are diverse in presentation and causation, so distinguishing one from another is both possible and necessary. Behavioral disturbances in dementia do not always have a single cause. A variety of contributing causes in predictable domains should be considered case by case. When a new behavioral disturbance occurs, it is necessary to work it up systematically by classifying it and by investigating possible contributing causes before
embarking on treatments.
There is no single or universal treatment for behavioral disturbances. Continuing with general supportive patient care and providing a wide range of interventions is critical. Patients must be monitored for response to treatment as well as for side effects, particularly when medicines are used. Side effects tend to occur more often, to last longer, and to take longer to resolve than in elderly patients who do not suffer from dementia.
We propose a systematic four-step approach to any new behavioral disturbance in dementia. The first step, describing the disturbance, has as its main outcome a decision about how to classify the behavioral disturbance. Description begins with the observable phenomena of the disturbance, the behaviors the patient is exhibiting, and places them in the context of the patient’s circumstances, mental state, and physical state of health. This phase requires a careful history from the patient and from one or more collateral sources, typically the primary caregiver. Important factors are the behaviors observed, their temporal onset, course, associated circumstances, and relation to key environmental factors, such as caregiver status and recent stressors. History taking is followed by a careful examination, both physical and neurologic. The mental status of the patient is assessed in detail by an experienced examiner. Laboratory studies may also be needed.
The next goal is to decide whether the behavioral disturbance fits a recognizable pattern. Determining which pattern best describes the situation depends on the clinical circumstance and requires clinical judgment about which aspects of the situation to emphasize. In some cases the clinician emphasizes recognition of a mental syndrome, such as delirium, major depression, minor depression, apathy, or mania, and associates the entire disturbance with this syndrome. In other cases certain disruptive behaviors are being driven by a particular mental state, such as a delusion or a hallucination. Sometimes the disturbance is primarily a disruption in one of the primary drives of sleep, sexuality, or feeding. In yet others the primary emphasis is on the observed behaviors as consequences of behavioral dyscontrol brought about by brain damage from the dementing disease. Finally, some disturbances have the characteristics of a catastrophic reaction (an excessive outburst of emotion and/or disruptive behavior precipitated by the patient’s being confronted with a cognitive impairment) or of an adjustment reaction (such as with a change in routine, a move to a new residence, or the introduction of a new caregiver).
After describing the behavioral disturbance and classifying it, the next step is to decode it. Decoding is looking for causes that may contribute to the onset or continuation of the disturbance. Table 16.2
lists the domains to consider in this process. Medications and general medical conditions have been associated with all types of behavioral disturbance through two additional mechanisms. If the observed pattern most closely resembles delirium, medications and general medical conditions are most likely to be the cause. Particular attention should be paid
to the possible effects of medication accumulation; all medications ought to be considered as possible causes of a new behavioral disturbance.
Table 16.2 Contributing Causes to a Behavioral Disturbance in Dementia
The most common medical conditions associated with behavioral disturbance are a urinary tract infection (both in men and women), dehydration, constipation, pain (such as from osteoarthritis or dental carries), visual impairment, hearing impairment, a viral syndrome (respiratory or gastrointestinal infection), and skin breakdown (particularly in nursing home or in institutionalized patients). Less common are stroke, pneumonia, deep venous thrombosis, and cardiac disease. Additionally, neglect of basic physical needs (leading to hunger, sleepiness, thirst, boredom, or fatigue) that the patient cannot adequately communicate is a cause of behavioral disturbance. In patients who have known chronic medical problems, such as diabetes, hypertension, or cardiac disease, a relapse of one of these conditions should be considered. The next issue is whether the patient is suffering from a new or recurrent psychiatric disorder. In some patients the psychiatric disorder is primary (i.e., not caused by the dementing disease), the recurrence of a lifelong psychiatric disorder, such as major depressive disorder, bipolar disorder, panic disorder, or schizophrenia. All of these may recur in the context of dementia and appear as a behavioral disturbance. In other patients the disorder is secondary to a factor other than the dementing disease, typically a general medical problem (e.g., hypothyroidism, a medication). The disorder may also be due to the brain damage caused by the dementing disease. This is discussed further later in this chapter.
The next part of decoding is to determine whether the behavioral disturbance is related to the cognitive disorder. For example, is the patient irritable because he or she is forgetting things or getting frustrated because he or she can’t talk? Is the patient forgetful enough to believe that he or she is living in a different period of his or her life and therefore believe that some persons are alive (typically parents or spouses) who are dead? A dementia patient may thus look at himself or herself in the mirror believing that he or she is young and not recognize the person who is there. Most of the behavioral disturbances directly linked to the cognitive disorder present as catastrophic reactions, acute behavioral, physical, or verbal reactions out of proportion to seemingly minor stressors. These include anger, emotional lability, and at times aggression.
The next question is whether there is evidence that the dementing disease has involved brain areas other than the ones associated with the cognitive disorder. Involvement of other brain areas may lead to characteristic behavioral or mental syndromes or secondary and/or organic disorders. Most often these occur with involvement of the frontal lobes, the temporal lobes, and certain subcortical regions.
There are several examples. Disinhibition, expressed in inappropriate social behavior, pacing, wandering, or perseveration may be related to damage to select frontal lobe and basal ganglia areas. Another syndrome consists of exploratory curiosity with hyperphagia and hypersexuality. In animals this is called the Klüver-Bucy syndrome; it is associated with damage to the temporal poles and the amygdala. Damage to anterior frontal and subcortical structures may lead to atypical mood syndromes, both depressivelike and maniclike states. Apathy (6
), a state of passive lack of interest, has been associated with damage to the temporal lobes, the cingulum, the dorsolateral frontal lobes, and the caudate nucleus.
Brain damage has been associated with unprovoked aggression, particularly if there is disturbed (usually increased) noradrenergic or dopaminergic neurotransmission. Repetitive or compulsive behaviors have been associated with brain injury to orbitofrontal areas and the cingulum. Delusions and hallucinations have also been related to injury to the limbic system. Finally, disturbances of the basic drives, namely, sleep, sex, and feeding, may appear as the dementing disease spreads to relevant brain areas.
The next component of decoding is to determine whether there is something in the environment that is affecting the behavioral disturbance. Common environmental stressors include disruption of routines, overstimulation (too much noise or too many people), understimulation (few people, with the patient spending much time alone), and other upset peers (patients).
The final consideration should be given to caregiver-patient relations. Almost all patients
with dementia have caregivers. Many of them have more than one at a time. Caring for dementia patients is difficult and requires a degree of sophistication that almost any caregiver is capable of acquiring with proper guidance. However, inexperienced caregiving, dominating caregivers, and caregivers who themselves are impaired through medical or psychiatric disturbances may interact with patients in such a way as to exacerbate or cause a behavioral disturbance. When evaluating a new behavioral disturbance, the clinician should consider the caregiver’s understanding of the patient’s level of condition, whether the caregiver is new to the patient (as is common in nursing homes and with agency nurses), whether the caregiver is approaching the patient properly, and whether there are too many caregivers involved in the patient’s care. Most of these sorts of problems occur in nursing homes. However, many occur in private homes, particularly if patients do not have established routines or the caregiver is impaired by a physical or mental disorder.
Once a behavioral disturbance has been classified and decoded, the stage is set for devising interventions to treat it. There are several types of interventions. First are preventive interventions, which include the development and maintenance of daily routines, the provision of routine primary medical care, attention to the patient’s sleep and eating patterns, safety measures to prevent accidents, teaching caregivers about the practical aspects of dementia care and behavioral disturbances, and linkage with experienced and accessible professionals to help assess and treat a behavioral disturbance. Second are interventions that address and remove the cause of behavioral disturbances, such as the discontinuation of an offending medication or the treatment of a bladder infection. Third are attempts to apply behavior management techniques (7
) or special programs for dementia patients with disruptive behaviors in nursing homes (8
). Finally, there are specific or empiric interventions targeted at particular disturbances. These may include psychotropic medications, electroconvulsive therapy (ECT), or bright light therapies.
A single intervention rarely makes a dramatic difference in a patient’s condition. A variety of concurrent interventions are usually necessary. Most of these involve changing the patient’s environment (rather than changing the patient) to fit the state of impairment or to meet needs. Decoding provides clues on interventions that may be tried. If recent medicines seem temporally related to the onset of the problem, these ought be stopped or reduced. If the patient has a large medication burden, efforts should be made to reduce the burden. If the evaluation reveals a medical problem such as constipation or a urinary tract infection, this should be treated as soon and as effectively as possible, and time should be allowed for the patient to recover fully.
Dementia patients may require a week longer to recover from routine medical problems than nondemented elderly. If a patient has a recurrent psychiatric disorder, it should be treated in standard ways. (An exception to this is the limited ability of dementia patients to engage in insight-oriented psychotherapy.) If a patient’s behavioral disturbance appears closely linked to the cognitive disorder itself, efforts should be made to reduce the likelihood that he or she will face these deficits. If a patient becomes lost and confused in a familiar environment in the evening, the caregiver should attempt to structure the patient’s time more in the evening and to provide more one-on-one attention at that time. If the problem is a specific mental syndrome associated with damage to particular brain areas, it should be treated specifically, often with a pharmacologic agent.
If the problem is linked to the patient’s routine, appropriate changes should be made. Patients may need more frequent meals and snacks so that they are less likely to be hungry; they may require more personal attention from caregivers; or they may need simpler levels of activity. If the problem relates to the caregiver’s approach, caregivers should be taught how to approach patients and manage their behavior by sophisticated clinicians. Such education is best provided through modeling by an experienced clinician in the environment in which the problem is occurring during the time of day the problem is most likely to occur and with regular repeat teaching sessions to reinforce the lesson.
Once a set of interventions for a particular behavioral disturbance has been planned, specific
implementation plans should be mapped out to determine whether they work. This map ought to include who shall do what intervention when, how long it is expected for individual interventions to take effect, and what will be done if interventions fail. When mapping out a treatment approach, fallback plans are very important, as it may be necessary to attempt several interventions before a patient improves. A fallback plan also gives caregivers, who are with the disturbed patient day in and day out, a sense that something is being done and helps maintain their morale. A fallback plan should provide for an intervention if a crisis occurs (e.g., if the patient becomes unmanageable, hospitalization should be available). In our experience hospitalization on an inpatient geropsychiatric unit benefits many seriously behaviorally disturbed dementia patients.
An important consideration in determining the outcome of treatment is the use of standardized assessment scales. Several such scales have good reliability, validity, and clinical utility. These may be used to describe the type and severity of a behavioral disturbance as well as to assess response to interventions. Four scales are recommended for their wide availability and relative ease of use. The Neuropsychiatric Inventory (9
) quantifies 10 types of behavioral disturbance in dementia, each on a10-point scale, assessing both frequency and severity of disturbance. It is most useful when clinicians are interested in a broad set of disturbances, as it is short and can be administered by a clinician who is not a physician. The Dementia Signs and Symptoms Scale (10
), which assesses 6 types of behavioral disturbances, is most effective in quantifying mania and irritability. Finally, the Cornell Scale for Depression in Dementia (11
) and the Apathy Evaluation Scale (12
) may be used to quantify depressive disturbances or apathy.
It is important to sustain the treatment plan once it is initiated. Many times the onus to sustain the plan is on the caregivers. The clinician should be sensitive to this and make it easy for the caregivers to implement the plan. Also, when using medicines, clinicians should be alerted to the fact that side effects occur more often, last longer, and take longer to remit than in the general population, so that as few medicines as possible should be used as briefly as possible and at as low a dose as possible. The rule “start low and go slow” applies. Adjustments of medicines should be made over periods that are longer than routinely practiced with other elderly patients. In this era of managed care pressures, it is always tempting to adjust medicines rapidly. This may lead to short-term benefits, and the patient may seem quieter or less explosive, but it may lead to side effects associated with rapidly escalating medication doses.