8: Excess Disability

It is often said of caregivers of persons with dementia that they have to learn a “new” language. What this means is patients, incapable of using (verbal) language, still communicate with us, nonverbally. Screaming, moaning, hitting, pacing, might be their way of telling us that something isn’t right. This is their new language, their new adaptive form of communication.

Because we can’t expect patients to relearn “our” language, we must make attempts at learning their “language”. What this entails is observing their behavior. Do you see a sudden change in behavior? For example, more agitation might mean that they aren’t feeling well or are extremely frightened. Grabbing their head might communicate, “I have a headache”. Refusing to bathe might communicate, “I have a fever and have the chills,” or, “I would like to be bathed by person X and not by person Y”. Person Y looks like my ex–spouse who was abusive for many years.

Certain facial expressions and body postures are other ways of communicating. Grimaces might communicate, “I’m in pain”. Smiling ear to ear might communicate, “I like what you’re doing”. A slumped over body posture might communicate, “My medication is making me feel groggy.” A “perky” body posture might communicate, “Things couldn’t be better.”

The exciting part about learning this new language is that all nonverbal persons with dementia have their very own language. Through talking with family members, other staff, and directly observing patients’ behavior we are better able to figure out what patients are trying to tell us; we are able to learn their language or dialect, as it were.

Out of all of the behaviors that occur in people with dementia, screaming, wandering, and aggression cause the most distress in caregivers. While behaviors like bizarre vocalizations can often be ignored, screaming, wandering, and aggression are problems that must be solved. Screaming upsets other patients. Wandering is potentially dangerous for the patient. Aggression is dangerous to the patient and others in close proximity. As a result of these behaviors, patients are more likely to be prescribed strong medications. These medications have severe side effects such as sedation, dizziness, agitation, tiredness and confusion, or—worst of all—irreversible changes in movement and facial expression.

Dementia patients who frequently display problem behavior are at very high risk for a condition known as excess disability. Excess disability is defined as impairment in functioning that exceeds what is expected due to the natural course of the disease. For early-stage patients excess disability occurs if they become depressed and socially withdrawn and, as a result, stop using verbal and other skills long before the disease destroys these abilities (“If you don’t use it, you lose it”). For patients in the middle and later stages of the disease, those living in environments that over– or under-stimulate are at high risk of developing behavior problems such as agitation and aggression. These behaviors drive others away, limit personal contact and therefore restrict practice in using more acceptable communication skills. Because of insufficient practice, these patients lose more skills than expected due to the disease. As mentioned, aggression increases the chances that patients will be prescribed strong medications. Medication may make a person too tired or too confused to use more acceptable communication skills, and any lack of engagement with others leads to greater impairment than predicted when considering the disease progression alone.

The figure below illustrates excess disability. In these hypothetical data, the solid line represents an individual who has numerous opportunities to communicate with others. For example, this person might be involved in a number of daily group activities that require conversation with others. The dotted line depicts the same individual, but this time he or she has far fewer opportunities to communicate with others. For example, this person might sit alone in his or her room most of the day and have difficulties initiating interactions on account of being on powerful anti-psychotic medications. While the individual in both situations shows a gradual loss in vocabulary on account of the disease, having far fewer opportunities to communicate with others can result in premature loss of vocabulary. Again, “If you don’t use it, you lose” it applies here.

It is important to allow all behavior in persons with dementia, the “good” and the “bad”. As caregivers, our role is to support all behavior for as long as possible, because one day all will be lost to the disease. Even though so-called “problem” behavior is disruptive, it might very well be the only “voice” the individual has left. This “voice” allows us to know whether a person is in pain or otherwise suffering. Therefore, instead of blocking problem behavior, we should try to figure out when and why it occurs so that we can make more dangerous forms of communication (e.g., aggression) unnecessary.