Verbal behavior that others consider disruptive is common in later-stage dementia. This behavior can range from a man who follows his nurse around asking repetitive questions, to the woman who sits in her chair and screams loudly for no apparent reason, to the man who lies curled up in bed, moaning softly through the night.
And there are many other variations on these themes. It has been estimated that 25 percent of those with dementia who still live in the community, and 50 percent of those who reside in long-term care facilities, exhibit this type of behavior at any given time. As many as 90 percent of those with dementia will demonstrate such behaviors at some point.
There are a number of different types of dementia-producing illnesses that can lead to screaming and other verbally disruptive behaviors. These include Alzheimer’s type dementias, vascular, Lewy Body, and frontotemporal, as well as the less common prion diseases, metabolic imbalances, and other degenerative conditions. Disinhibited behaviors are often associated with frontotemporal dementia, but they can be due to other diseases as well.
Often, sadly, the typical response to these disruptive individuals is to administer some medication intended to calm the person and make the behavior more manageable. However, in most cases there are non-pharmaceutical interventions that not only work much better, but also produce fewer side effects. I have heard it said that up to 95 percent of behaviors in people with dementia are actually a form of communication. When one considers the loss of verbal language production that inevitably occurs in dementia’s latter stages, it is no surprise that people with this disease resort to whatever means they can to communicate with the outside world.
The messages they seek to convey tend to fall into a few common categories: 1.) “I’m in pain,” 2.) “I’m lonely/frightened/bored,” 3.) “I don’t want to be here,” and 4.) “I need/want something.” At times, it is readily apparent what the person is trying to say. But, more often than not, the person’s caregivers need to do a little detective work to decipher the meaning behind the verbal outburst.
When I work with a nursing home resident with dementia and consistently problematic behavior, I first attempt to define the behavior more clearly. What exactly does the resident do? What times of day does this occur? Are there any other events and circumstances associated with the behavior—occurring immediately before or after the behavior, for instance? What else is going on in the environment? It is also helpful to know what interventions have been attempted in the past for dealing with the behavior, and whether these interventions have proven at all beneficial. I try to learn as much as I can about the resident’s medical, family and occupational history. It is important to remember that this verbal agitation or disruption is a symptom and not a disease or condition in itself.
Pain, often related to conditions such as arthritis, compression fractures, limb contracture, and constipation, is responsible for perhaps as much as 50 percent of verbal disruptions. Because people with advanced dementia may lose the ability to ask for pain relief, administering a daily maintenance dose of Tylenol or a similar medication can be helpful.
In addition, I recommend doing the following to assess what might be causing discomfort:
- Conduct a physical evaluation. Has the resident recently been placed on a new medication, or taken off one? Is there any sign of infection, injury or other medical issues? Is there pain related to arthritis, a toothache, constipation, etc.? Is the resident hungry or thirsty or in need of a change in bedding?
- Survey the person’s environment to determine if any changes may have prompted the behavior. This could be a change in the routine, a new caregiver or a new roommate. Perhaps the hustle and bustle of getting the unit ready for Christmas is too much for the person to handle. Has there been an upsetting visit from a family member? (Also be aware that understimulation can be just as problematic.)
- Assess the caregivers in this particular situation. Caregivers, both professionals in long-term care facilities, and family members in a home environment, are subject to a great deal of stress. This stress may not be directly related to the situation at hand. It could be that a nurse has had to place her own husband in the hospital, or has just learned that a son is having trouble in school. And if the caregiver is feeling stressed, it is likely that her charges will pick up on this as well.
Any form of intervention ultimately depends on the cause of the outburst. Treating acute medical issues—and addressing dehydration or hunger—should take precedence over anything else. Next, consider environmental modifications, such as using softer lighting or music, establishing a routine that can provide a calming influence, and so on.
Music is associated with reduced agitated behavior, especially during bathing or meals. Light physical exercise can prove to be a pleasant distraction for the person. Other possible interventions can include pet therapy, massage, white noise, photographs of family or familiar people and places, and attention to any personal needs the person may have.
If you’ve tried all these strategies, and the person with dementia continues to be disruptive, possibly posing a risk of self harm or harm to others, then antidepressants, mood stabilizers and antipsychotic agents may provide some benefit. But, given that the side effects can be severe, opt for such agents only after careful consultation with the person’s physician and family.
Jami L. Hede, MS, CCC-SLP, is a private practitioner and affiliate of ASHA Special Interest Group 15, Gerontology. This post was adapted from her blog, “Exploring Dementia.”