Researchers at the University of Rochester School of Nursing have found that people with dementia who remain sufficiently aware to realize they are losing their ability to function, are the patients in nursing homes who may be most likely to have dramatic emotional breakdowns and to lash out physically or verbally.
Nurse researcher Nancy Watson, R.N., Ph.D., and her team found that patients who are in the middle of their decline are five times as likely to become intensely distressed than patients either in the early or late stages of dementia. She presented her findings from a study of 100 nursing home residents, at an August meeting of the European Union Geriatric Medicine Society in Paris.
“These patients may still be conscious of their cognitive losses, but they are losing their ability to cope or compensate for them, resulting in extreme emotional distress,” said Watson, who heads the school’s Center for Clinical Research on Aging and who has studied conditions and patient behavior in nursing homes extensively.
As part of the study, nurses observed patients in two Rochester-area nursing homes for 168 hours – 21 eight-hour shifts, or the equivalent of a full week. Nurses recorded 229 “catastrophic” events; nearly all involved extreme anger, and oftentimes the anger was accompanied by severe sadness, fear, hostility, or anxiety. Behaviors included screaming at or hitting caregivers, insulting other residents, being terrified of ordinary things like elevators, becoming distraught at not being allowed to visit a (long-dead) neighbor, pacing back and forth, sitting in a corner and wailing or sobbing uncontrollably, or pounding on a table or throwing things.
Nearly every nursing home worker has witnessed what scientists call a “catastrophic” reaction, where a patient becomes extremely agitated and emotionally upset, but there’s been little progress in identifying which patients are most vulnerable. The current findings should help caregivers and even family members recognize which patients are most at risk for becoming upset.
“A catastrophic reaction is when somebody loses control emotionally,” Watson says. “It’s clear that these episodes cause extreme emotional pain for the person as they experience it. The angst they’re expressing is truly felt. These patients are in intense emotional distress and need immediate help from staff.”
People in the middle stages of dementia typically have an increasing need for help with tasks like personal hygiene and eating. Other common signs are greater problems with short-term memory, difficulty making decisions about daily living, and increased trouble communicating with others.
Watson’s team had seen such behaviors often during other studies of nursing home residents, including one where they found that using rocking chairs helps to ease the anxiety and depression of many people with dementia. The team decided to look more into the causes of acute distress, and with funding from the New York State Department of Health, Watson launched the study with a group of nurse researchers, including research associate Kathleen Plum, nurse Marge Lash, retired faculty member Carol Brink, and health project coordinator Eileen Root Taillie.
The team found that the one event that triggers the most episodes of acute distress is needing help with personal hygiene, particularly care that seems intrusive; patients may see such care as a sign that they are no longer in control of their own bodies. In her study more than half the catastrophic reactions occurred during care activities.
Like other studies, this one noted a “sundowning” effect: The time period toward the end of the day, around the dinner hour, is when people are most likely to have a breakdown. Among the other findings: Supervision in common areas such as day rooms helped ward off reactions, as aides oftentimes were able to foresee problems between residents and take steps to prevent them. Researchers found that a change of environment – moving or convincing a resident to move to another room – was also helpful. On the other hand, simply distracting patients did little to shake them from their distress.
Watson hopes that the information from the study can help nursing homes treat people with dementia appropriately and compassionately.
“Caregivers have a tremendously difficult job, and this could help them be aware of who is most likely to have a problem. Staff members need to approach residents about care issues in an especially gentle way, bearing in mind what they may be feeling or thinking. It’s a very painful, sad time for these residents. By understanding these reactions better, we may be able to lessen their impact and occurrence, making life better during this phase of dementia.