7: Need to Communicate

During middle to later stages of dementia, some individuals have difficulties telling others that they are in pain due to a toothache, illness, or injury. Perhaps they can’t find the words to describe how they feel or lack the initiative to ask for help. In severely impaired individuals, they may not even know why they’re in pain. They simply feel lousy and are in a bad mood. Feeling lousy and being in a bad mood make them more likely to aggress, as anyone would in that situation.

Because such individuals are incapable of telling us that they are in pain or otherwise in need of immediate attention, it is important not to restrict aggressive behavior. Aggressive behavior might be the only effective form of communication they have left that lets us know that they are suffering or something isn’t right for them. We say “effective” because aggressive behavior is guaranteed to grab our attention right away. Of course, ideally, we are always better off anticipating problems by getting to know the individual. For example, by knowing their preferences, we might know certain activities are off limits. We might also become better at reading their emotional behavior before it escalates and gets out of hand.

Therefore, our goal in using an environmental approach is to make problem behavior unnecessary by seeing to a patient’s needs in other ways. For example, a patient with a toothache might become agitated. Rather than wait for the person to aggress, we might pay careful attention to nonverbal pain behavior and other signs that seem to appear out of nowhere. Behaviorally, does cold or hot foods disrupt chewing (e.g., spitting out food)? Does the patient frequently rub his or her right cheek? Are his or her gums bleeding? Does the person grimace? Is there an increase in moaning? In terms of other signs of a toothache, is there increased swelling on one side of the face? Does the patient have really bad breath? Of course, as some of these signs are hard to detect, agitation or aggression might be impossible to prevent; for staff and family cannot be expected to be at all places, at all times with the patient.

These subtle and not so subtle pain behaviors and other signs communicate to us nonverbally that something is wrong with the patient. In the above example, these signs tell us that the individual has a toothache. Our next step, of course, would be to take the patient to the dentist. By seeing to the person’s needs (i.e., pain reduction) we’re able to prevent further aggressive behavior. The sooner we act the better.

Bear in mind that we didn’t eliminate aggressive behavior from the person’s repertoire (a “repertoire” is all of the behavior a person is capable of). Eliminating aggressive behavior through medication would in effect block this effective channel of communication. As a result of blocking this form of communication, the patient would still be in pain, however, we may have no way of knowing it; especially if pain behavior is so subtle that it easily goes unnoticed. For this reason, professionals and family members should make a concerted effort at promoting all forms of behavior for as long as possible, even aggressive behavior, for someday most if not all behavior will be lost to the disease.

Behaviors like urinating in planters, hording, and strange vocalizations are considered “bizarre” by onlookers. As it turns out, all so-called “bizarre” behavior observed in persons with dementia is adaptive. Patients simply do the best they can with what’s left of their skills, which diminish over time. Even screaming, while unpleasant to observers, is an adaptive behavior that should not be taken away. In the past, patients might have been able to tell professionals and family that they are in excruciating pain or are having an extreme reaction to a new medication. They simply say, “I’m in pain,” and we – as healthcare providers – try to locate the source of the pain and remedy their condition. If they say, “This medication is making me feel dizzy and nauseous,” we make adjustments to their medications, accordingly. How can patients who have lost their ability to communicate tell you that they’re in pain or otherwise require immediate attention? How do we as healthcare providers even know when there is a problem if they can’t tell us using words?