By: Gina Boerger, PT, DPT Therapy Advantage
Pain is something all of us experience, but for a person living with dementia, recognizing and communicating pain can become much more difficult. A person may still feel pain just as strongly, but they may not be able to tell you where it hurts, explain what it feels like, or ask for help.
As dementia progresses, words may no longer be the best way a person communicates discomfort. Instead, behavior may become their way of saying, “Something is wrong.” This is an important message for families, caregivers and senior living staff: a change in behavior should not automatically be assumed to be “just the dementia.” Pain is one possible cause and should be considered. The National Institute for Health and Care Excellence (NICE) recommends assessing for pain when a person with dementia develops behavioral changes that could be related to discomfort.
When Pain Changes Behavior
Imagine a person who normally enjoys getting dressed but suddenly begins resisting care. Or perhaps a loved one who is usually pleasant becomes irritable, restless or even angry. Another person may become unusually quiet and stop participating in activities. These changes can be signs of pain.
A person experiencing pain may:
● Become more restless, agitated or irritable
● Pace, rock or fidget more than usual
● Grimace, frown, clench their teeth or appear frightened
● Moan, groan, call out or make unusual sounds
● Rub, pull at or protect a particular part of the body
● Resist bathing, dressing, transfers or other care
● Become quieter, withdrawn or less interested in activities
● Sleep more—or have difficulty sleeping
● Eat less
● Move differently or have more difficulty walking
● Become more anxious, tearful or upset
People respond to pain differently. One person may cry or call out, while another may withdraw or become angry. Alzheimer’s Society notes that pain and discomfort can sometimes be associated with aggressive or distressed behavior, making it particularly important to look for an underlying physical cause.
Look for What Is Different
One of the most valuable tools families and caregivers have is knowing the person.
What is different today?
If someone who normally walks to meals suddenly refuses to get up, could their hip or knee be hurting? If they resist getting dressed, could their shoulder hurt when their arm is moved? If they become restless at night, could they be uncomfortable in bed?
Pain can come from many sources, including arthritis, injuries, infections, constipation, dental problems, pressure areas or simply sitting or lying in one position for too long. A sudden change in behavior deserves attention. It may be pain, but it could also be another medical issue such as infection or delirium. When there is a significant or sudden change, families should notify the person’s healthcare provider.
How Physical Therapy Can Help
Physical therapy can play an important role in helping older adults manage pain while maintaining mobility and independence.
A physical therapist can look at how a person moves, identify areas of weakness, stiffness or limited mobility, and determine whether movement itself may be contributing to discomfort. Treatment may include gentle exercises, stretching, soft tissue mobilization, strengthening, balance activities, positioning, walking practice, transfer training and recommendations for assistive equipment.
For a person with dementia, physical therapy can also be adapted to the individual’s abilities, preferences and communication style. Sometimes the goal isn’t to eliminate every bit of pain, but to help the person move more comfortably, participate in daily activities that have purpose and maintain as much independence as possible.
A Simple Question Can Make a Difference
When a loved one with dementia suddenly behaves differently, pause and ask: “Could this be pain?”
Observe their facial expressions, movements and reactions. Talk with caregivers who know their usual routines. Share changes with their healthcare team. If the person cannot reliably describe their pain, healthcare professionals can use observational pain assessment tools to help identify signs of discomfort. Most importantly, remember that the person is not “being difficult.” They may be communicating the only way they can.
When we learn to listen to behavior, we may discover that agitation is discomfort, resistance is fear of being hurt, and withdrawal is a sign that something doesn’t feel right. Recognizing pain is more than treating a symptom—it is about helping the person feel safe, comfortable, understood and able to enjoy the best quality of life possible.
