All those “behaviors” that caregivers, families, and other residents find so distressing are just the resident’s attempt to communicate, says Jonathan Evans, MD. “The challenge for us is trying to figure out what they’re saying.”

dementia careEvans is a geriatric physician who trained at the Mayo Clinic in Rochester, Minn., and then was a member of the renowned organization’s faculty for several years.

Trying to find nonpharmacological solutions to managing residents’ disruptive or injurious behavior has been a mission of his for two decades, and he has published on the topic since 1984.

“My main interest is in trying to improve dementia care without medications,” he says. “I’m not trying to indict the medications, but it’s more gratifying to figure out what people are trying to say through their behavior and help them get what they want. And we don’t have to worry about side effects.”

Evans has identified some broad rules to keep in mind when trying to determine what that communication may be about.

■ First, seek to understand. The biggest rule for caregivers is to first seek to understand and then to be understood, he says. Try to understand what the person is reacting to: “Most behaviors are in response to something,” Evans says.

■ Multiple causes. “Here’s the thing,” he says, “Any given behavior may have multiple causes. For example, take wandering. Wandering might mean someone is lost, bored, wanting to exit a stressful situation, or has to go to the bathroom. Maybe the person has a lifelong pattern of walking to cope with stress or may just be stretching out painful joints.”

■ Aggression indicates interpersonal conflict. Behaviors that involve aggression “represent conflict between the resident and usually the human in the environment,” says Evans. “What’s going on is the individual with dementia by definition has problems comprehending and reasoning, and they misperceive certain actions by people in their environment as a threat to them.

“As an example, I’m in a hotel room. While I’m asleep, if someone suddenly woke me up and was pulling on my clothes, my immediate reaction would be to fight. That’s a primitive instinct. Fast forward 35 years and I’m in a nursing facility or hospital bed, and while I’m asleep people come up and start pulling on my clothes. I don’t know who they are—can’t remember who they are. I’m going to perceive that as a threat.” Waking the person gently, re-introducing yourself, and telling them what you are about to do and why may forestall aggression.

■ Is the distress theirs…or others’? Another rule for caregivers is to determine whether the behavior is due
to the individual being in distress, or is it just discomfiting to other people. “If they’re not in distress, they’re not sick and they don’t have a problem,” he says. “Someone who urinates in a trash can because he thinks it’s a toilet—that causes distress to someone else, not to the resident. Or an individual undressing in a day room when they think they’re in their own room and they’re hot—they may not have a problem at all until someone tries to make them stop.”

■ Keep a log, and look for patterns. When did the behavior start? What was present? What was that person doing? Write out what happened in as much detail as possible each time an incident occurs. Over time that “typically leads to insights that help caregivers figure out what people are misperceiving and responding negatively to,” Evans says, and enables staff to avoid a repeat of the incident.

■ Other tips. Even when aggression is not a concern, caregivers should identify themselves when approaching the resident. Tell the person “what you’re going to do before you start doing it. That often allays people’s fears,” says Evans. Talk to the resident at eye level.

With tasks like brushing teeth or combing hair, which can be areas of difficulty, rather than try to do it for the resident, put the comb in his or her hand and then move the corresponding arm in the correct motion. “That way, you’re assisting but they feel more in control,” Evans says. “They may not know what to do with the comb, but you’re showing them.”

Break each task into a single step at a time, rather than do multiple things at once. For example: Put the toothbrush in their hand, curl their fingers around it, guide their arm slowly until the toothbrush enters their mouth. “These are the kinds of things that doctors aren’t taught, and often neither are nurses or certified nurse assistants,” Evans says.