Repetitive actions may be dementia-related symptoms which signal over- or under-stimulation. The person with dementia may resort to repetitive actions such as fidgeting when they are bored on when they are faced with too much visual, auditory, or tactile information. Fidgeting may also be triggered when dementia caregivers ask them perform overly complicated tasks which they can no long start, sequence, or stop. Pacing may signal over- or under-stimulation, or it may reflect that a person is attempting to move away from pain or discomfort.
My client Jenny has noticed her brother pacing the halls outside his door and muttering under his breath. She asked me what this means and what she should do.
If Fred was calm, she might say “I see you’re walking back and forth. It’s a beautiful day outside. Will you come walk with me in the courtyard?”
But Fred was agitated. The next time Jenny encounters this behavior and demeanor, she might gently call “Fred” to get his attention. And while reaching out her hand to him, she might say, “Fred, you look distressed. Is something wrong?” By doing so, Jenny has shown concern without judgement, that she is supportive, and that she wants to help.
Through our work together, Jenny has learned that pacing may signal pain rather than boredom. Fred’s facial expression reinforces her guess that Fred is in physical distress. Next time, Jenny might ask a few yes-or-no questions to try to quickly assess what’s happening so that any necessary medical response can be administered promptly.
“Is it a headache, or something else?” she might ask. If it’s something else, then “Is it an ear ache, or something else?” Because dementia eventually affects a person’s ability to detect, locate, or describe pain, dementia caregivers may not get the information she needs by asking “Where does it hurt?” So, a series of yes-no questions may help narrow down any physical triggers for the repetitive pacing and muttering.
Jenny should attend to any physical unmet need before addressing the emotions that have escalated. But if Jenny can’t find a physical reason for Fred’s pacing and distress, she might probe for an emotional trigger with a gentle approach. “I see the look on your face. Something’s wrong. Can you tell me about it?”
By talking with Fred, she may find that he is bored and lonely and, unable to do anything himself to change the situation, he mutters to himself while pacing. If Fred is indeed bored and lonely, Jenny might suggest they go to the cafeteria and play cards. Fred can still enjoy gin rummy, and they might find others in the common area who could enjoy fellowship. Perhaps other men Fred’s age will be there and Jenny could introduce them, with the hope that new friends might expand his world and create new activities and conversation the men may enjoy together.
Boredom is often a problem in dementia because those that live with it often lose the ability, or confidence, to initiate new conversation or activity. Yet if assisted by dementia caregivers, they can usually find some enjoyment in both. If pacing or fidgeting is not caused by an attempt to move away from pain, try to engage the person living with dementia in an activity or hobby they enjoy. Social or activity engagement can help bolster well-being by fulfilling unmet needs such as the needs to belong, to feel valued, and to have purpose. The fulfillment of these needs is essential for quality dementia care.