Dementia and pain often go together. Yet pain tends to be under-treated in older people generally, all the more so when they have dementia. Pain assessment in dementia is challenging: People with Alzheimer's may lack the cognitive ability to identify a pain and report it. Others are stoic by nature and reluctant to admit anything's wrong; their automatic response to any health inquiry is "fine." Or they may forget pain altogether.
I'll never forget sitting with my Dad at a doctor's office for evaluation of a renal tumor. "Any pain?" the doctor asked.
"Nope, feel strong like bull!" my then 86-year-old dad (with a renal tumor and dementia) replied.
"But what about when you were rubbing your side in the elevator? Remember when you said your ribs hurt?" I tried prompting (while sending meaningful looks to the doctor).
Dad just looked at me like I was crazy. "I never had any pain!"
How can you evaluate for pain in someone with Alzheimer's or another dementia? Clinicians use several different kinds of pain and dementia pain scales. But any caregiver at home can look for the following:
Palpate and watch the face.
My sister-in-law, who's been Dad's hands-on caregiver, recently mentioned how she had to tell a visiting nurse this tactic because he won't ever admit to pain. Instead of taking his report at face value, you have to gently probe the area in question and see if the pain registers in his expression.
Other telltale facial expressions (whether or not you're touching a part that hurts): Rapid blinking, grimacing, closed or wide-open eyes.
Listen for unusual vocalizations.
Even if the person doesn't say anything, he may make unusual sounds: heavier breathing, calling out in the night, even swearing "“ especially if that's unusual for the person.
Notice unusual behaviors.
Sometimes people with dementia rock back and forth or paces more when in pain. Or they may lash out physically in anger. These behaviors can be code for, "I hurt." Notice if there's a pattern, for example at bath time or when the person is held a certain way.
Beware of changes in everyday activities.
Someone who stops eating, for example, may have a dental problem such as an abscessed tooth. Troubled sleep is another danger sign.
Don't be too quick to blame personality and emotional changes on the dementia.
Someone with untreated pain may suddenly be more irritable and angry than usual, among other changes. You might not automatically think "pain," but it's worth putting it on the list of things that you consider.
It's also common to focus so much on the person's dementia to the point of forgetting he might also be coping with the normal aches and pains of aging: arthritis, bumped knees and elbows, pressure sores in those who aren't very mobile, and other illnesses. All the more reason it's worth a caregiver's time to check out this excellent and easy-to-follow online seminar, posted earlier this month by the University of Alberta to help caregivers better handle pain and dementia.