Solving Dementia Mysteries

      Dear Dr. Jeff: Our team struggles with the reality of the attempt to provide quality care for residents with dementia and the care philosophy espoused by dementia experts and enshrined in regulations by CMS. We believe in nonpharmacologic approaches, in person-centered care, in the theory that dementia behaviors are not simply random and should be understood. And, of course, we are well aware of the black box warning on antipsychotic use for dementia management. But when residents kick, bite, or scratch our staff and sometimes other residents, when incessant screaming disrupts the other residents, when noncompliant behaviors place residents at risk of injuring themselves or endanger potential recovery and return to the community, we often seem to have few alternatives. The interdisciplinary team has absolutely no idea what much of this is about or what nonpharmacologic approaches beyond our few standards approaches should be used. Many of these residents come from the hospital after psychiatric evaluations with recommendations for antipsychotics, and many also received 1:1 nursing attention for most or all of their hospital stay — which we can’t provide. Any suggestions?
      Dr. Jeff responds:
      Sadly, there are few easy answers. The very notion of person-centered care is that there are no standard care plans, no behavioral order sets or cookie-cutter approaches. However, you should be reassured that the hope of finding solutions is much higher with the team approach used in quality long-term care facilities and with a team who are at least trying to understand. There are certainly some approaches that will improve the chance of adjusting your care plan to the individual needs of a resident and many interventions to consider beyond the most common ones.
      Careful documentation of the resident’s behavior is clearly the place to start. All too often, nursing home charts for “problem” residents lack more than cursory mention of the actual behaviors. Behavioral notes that say the resident was “agitated” or “calling out” or “resistive to care” do not provide the interdisciplinary team (IDT) with much to work with, especially when the time, frequency, and surrounding events, which might have contributed to the behavior, are not recorded. The identification of “triggers” for behavioral patterns requires adequate information.

      Reexamining Resistance to Care

      The etiology of resistance to care may vary tremendously, depending on the aspect of care being refused. For example, a resident who fights against changing a shirt, blouse, or gown might have a sore shoulder or rotator cuff tear — one resident I was asked to see actually had a dislocated shoulder. Another resident for whom I was the physician fought against having his shoes removed. As we learned, he had once missed a major family event because of a lost shoe. Aware of his tendency to lose things, he was apparently worried that he would lose his shoes again and be unable to return home. When his shoes were removed separately and he was allowed to hold each one as it was removed — and he could then keep them on his table where he could see them — he no longer kicked the certified nursing assistants who helped him get ready for bed. These examples reflect both the individual variables that can drive behavior and the reality that neither could have been understood from a behavioral note that simply described scratching or kicking “during care” or even “with dressing.”
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      Few human beings experience only one emotion all day. How can there be a single behavioral intervention that responds to all of them?
      Photo by Mali Desha on Unsplash
      Words like “agitation” are sadly nondescriptive and do not further the process. Several excellent clinicians, including Dr. Ladislav Volicer, Dr. Jiska Cohen-Mansfield, Dr. Peter Rabins, and others, have published discussions on attempting to describe and classify what the term “agitation” might mean — and particularly what it does not mean. Many of these can be found in issues of JAMDA. Unfortunately, the word continues to be widely used in long-term care facilities to indicate virtually any behavior of which the observer disapproves.

      Improving Documentation

      Improved documentation is also key to determining the effectiveness of treatment modalities. As behaviors persist, staff often decreases the frequency with which the worrisome behaviors are recorded. This may lead the care team to mistakenly believe that the care initiatives are effective when the unit staff has simply become accustomed to the behaviors. This is particularly true when antipsychotics are already in place, owing to the illusion that the symptom is somehow being treated and is thus more acceptable. When, after months of ineffective use, the possibility of gradual dose reduction is entertained, the persistence of behaviors is pointed to as justifying continued use — when, in fact, it actually represents a failure of treatment.
      Various interventions that are known to be effective for some residents, such as the Music and Memory program or lavender aroma therapy, may also be inappropriately continued when the behavioral documentation on efficacy is scanty or incomplete. Alternately, an intervention that is effective for one situation — such as when massaging the hands with lavender hand cream is effective in helping a resident to relax before sleep — may be completely ineffective to manage pounding on the table with shrieking in the midafternoon.
      Few human beings experience only one emotion or sensation all day. More typically, we cycle through hunger, a pleasant memory, boredom, pain, the desire to escape from annoying surroundings, fatigue, an itchy back, a brief muscle cramp, loneliness, thirst, yearning for an absent loved one, intrusive worries about future events, the need to empty one’s bladder, and so on. How can there be a single behavioral intervention that responds to all that? Some residents might respond to a regular schedule of food and fluids, periods of rest, preemptive analgesics, and activities/diversions; and many transitory emotions will simply pass without any intervention required. How often does a medication aimed at a behavioral symptom wind up not being given because in the time required to request the order, complete the required documentation, obtain the medication, and find the patient to administer it, the “agitation” has resolved?
      Some residents with dementia are quite capable of describing, if asked, what they are feeling or what they think they need. Others lack the vocabulary or clarity of thought to express themselves. Most admissions come from the hospital with at least a minimal medical history and a recent medication list. A focused physical examination at admission, along with diagnoses of either typically painful conditions or prior orthopedic procedures, may point to pain or potentially painful care procedures that should be addressed and treated.
      Existing pain medication regimens that authorize “as needed” analgesics often mean “receives none” for the residents who cannot ask. Routine medication regimens that do not match the known pharmacology of those medications are also suspect. The resident with an order for acetaminophen every twelve hours who becomes “agitated” in the late afternoon may not be sundowning but experiencing pain from the predictable absence of effective analgesia. Medications also have known side effects, which the resident might be experiencing; a symptom may be addressed by simply removing the stimulus.

      Looking at History

      It goes without saying, but needs to be said: understanding behavior requires understanding the person. The more that the care team knows about the resident — particularly about her or his prior life, interests, habits, relationships, experiences, and traumas — the better the team will be able to identify issues and react to them.
      Those who know the resident — including family, neighbors, friends, and home health workers — can be extremely valuable information sources. They may have identified successful strategies, which they used before admission, to address some of the behaviors that mystify our staff. After all, dementia is a chronic, slowly developing category of disease, and human personalities develop and transform slowly over time. These prior caregivers and friends also represent a resource for understanding the resident’s past experiences and pleasures.
      Often the history obtained by the staff in the activities/therapeutic recreation department provides a valuable profile of the resident’s personality, particularly when it goes beyond checking the boxes about a resident’s interests and preferences. For example, a home health aide or family member may report that the resident enjoyed watching daytime television. This is, of course, useful information to help establish a regular routine for the resident and to prevent boredom or divert the resident. But it is even more useful to also know if the resident watched Judge Judy or General Hospital or The Young and the Restless or even a news network. Building a daily schedule around enjoyable experiences may add motivation to complete resisted tasks — as when a resident’s toileting schedule is explicitly created to avoid disrupting an enjoyed experience.
      Adding snacks to an enjoyed program may both increase the resident’s calorie consumption and diminish mealtime conflicts. Current technology also allows us to tape or stream favored programs or movies, which can permit weekend repetitions or replaying prior episodes with flexible scheduling to serve as a diversion from undesired behaviors. Individuals with minimal memory impairment frequently enjoy watching familiar films, which may trigger favorable memories or seem totally new to those with significant memory impairment.
      Although most residents have prior employment histories, these are rarely obtained as a guide to understanding their behaviors. Most adults spend more time at work than they do with their families; work helps to define who we are and how we view ourselves, so this may be a valuable resource to understand behaviors. Residents who formerly worked evenings or nights may have altered sleep schedules. Repetitive actions may mimic the physical activities that were required of the resident on the job. A former security guard or retired nurse might not be wandering — they may be making their rounds.
      There is a commonly held belief that residents are forbidden to perform any tasks that would normally be the responsibility of the community’s staff — but this isn’t necessarily true. Although residents cannot be forced to do tasks for which the facility is presumably reimbursed by their insurance, the exception to this is when the work is an explicit part of the resident’s care plan. A former waitress may wish to help set tables to enhance her comfort with the dining room. A retired psychologist may wish to sit with different tables of residents and encourage discussion. These activities may preserve the residents’ strengths and encourage them to view themselves as care partners rather than care recipients. Successful performance of tasks can support a resident’s sense of self-worth — just as it does our own.

      Tossing the Hammer

      As the psychologist Abraham Maslow noted, “it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” For too many years, for health care professionals the only tool for behavioral management in dementia was the antipsychotic — and every behavior to be eliminated appeared to be psychotic. When specialists tried to remove the hammer, and the Centers for Medicare & Medicaid Services placed great barriers to treating all residents with dementia as though they had a psychotic disorder, long-term care providers felt bereft.
      Even the extensive literature demonstrating their lack of efficacy and potential side effects has not discouraged the widespread use of antipsychotics. The famous black box warnings with threats of death have only produced ingenious measures to avoid regulations and minor, albeit statistically significant, decreases in use.
      But the backbone of good dementia care management is really the same process as all good health care: observe the problem, gather relevant data, create a differential diagnosis, and then develop a care plan based on your diagnosis while monitoring the response. The formulary of responses and treatments available to us should be as extensive and varied as our residents.
      Dr. Nichols is past president of the New York Medical Directors Association and a member of the Caring for the Ages Editorial Advisory Board. Read this and other columns at under “Columns.”