8 Tips for Recognizing Pain in a Person with Dementia
Carol Bradley Bursack | Sept 17, 2015
People with dementia, especially advanced dementia, often have a difficult time articulating pain. Sometimes they may not be cognitively aware that pain is the source of their distress. Therefore, it’s our responsibility, as those who provide for their care, to watch for signs of distress that may arise from pain.
The factor that allowed us to finally understand that my dad was ready for hospice care was when he’d prop himself up on one arm and repeatedly slam his fist into the opposing palm, with a grimace on his face as if he was trying to pound out pain. Body language is a powerful means of expression – and often the only means for expression – for those who cannot express feelings through words.
In my dad’s case, I’d call the expression grimacing, a universal expression of pain or upset. A consistent frown or squinty facial expression can also indicate pain. If you see any of these expressions try to determine what is causing the problem. These expressions may or may not be accompanied by movement, but they could be the only visible clue that indicates pain.
Refusal to Move or Change Position
If your loved one resists movement or actively refuses to change positions while in bed, or from sitting to standing or the reverse, consider pain as one potential cause. Rigidity can be one way of expressing this pain, though with people with Parkinson’s a certain type of rigidity goes with the disease. Look for differences.
Distressed sounding vocalization doesn’t always indicate physical pain but it generally means that something upsetting is going on. This could be cognitive, emotional or physical. Determining the cause can be a challenge because the caregiver needs to check for environmental disturbances such as over stimulation as well as potential physical pain. Keep trying until you find a way to calm the person.
Crying is a common after-effect of a stroke. This condition, called the pseudobulbar affect (PBA), is difficult to treat and often accompanies vascular dementia. However, crying can also indicate pain or hopelessness in anyone. Caregivers aren’t likely going to be able to completely eradicate this behavior but at least attempt to comfort the person. Consider doctor approved medication if pain is a possibility.
Rocking back and forth in a bed or static chair, pacing anxiously around a room, moving a limb back and forth or moving the head unnaturally can all signal discomfort. It’s human to attempt to get rid of the pain or avoid it so these movements are nearly universal. Pay attention to signals that the person needs comforting. Again, approved pain relief should be considered when other options fail.
People with dementia, particularly Alzheimer’s, often have problems with sleeping through the night. For my dad, whose dementia was not Alzheimer’s, wanting to sleep around the clock was one way that he tried to escape pain. Others may barely sleep at all. While there are many reasons for disrupted or unusual sleep patterns, pain should be investigated a one possible culprit.
Acting out in an aggressive manner is often the only way a non-verbal person can let others know that they are in pain. Remember that the pain is not always physical, so consider anxiety, fear and other emotional issues as well as physical pain. There is no guaranty that you are right, but it never hurts to adjust the environment and offer soothing support. Consider pain therapy or medications as an option when other interventions don’t help.
Put yourself in your loved one’s place. Would you like to be in pain with no way to tell others what is wrong? Body language, facial expressions, loud vocalization and behavior that is often called acting out, may be this person’s only way to communicate the need for help. Remember that the person isn’t trying to be difficult. The disease is difficult. The person needs comfort and possibly doctor approved pain relief.