Dementia and Pain

Last updated: September 15, 2009
Image by Todd Huffman used under the creative commons attribution license.

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.

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8 Comments So Far. Add Your Wisdom.

8 months ago

I can remember having this conversation with my father (Parkinson's and probable Lewy Body Dementia) and his healthcare provider at one visit: HC provider: Do you feel any pain? Dad: No. Me: Would you tell them if you had any pain? Dad: No

about 1 year ago

I'd like to add something to this. If they are already being treated for pain, be aware that pain meds can cause pain, and anti-depressants can cause depression. If they have been on a med, and you notice worsening symptoms, keep in mind it may be the medication. I had attended seminars and read in numerous newsletters about this, and when my Mom was alive, I noticed that when she complained of pain to the doc, he increased her meds. Interestingly, an increase in pain came with the increase in pain med. He was a pill pusher, and eventually, I had a heart to heart with my Mom and told her I thought the meds might be the problem and told her I would seek out someone to help us reduce or remove some if that was her wish. She told me several time she wanted to stop taking the pain pills (they are addicting and cause withdrawal symptoms). So I made an appt with a pain specialist, but the first appt was over a month away. She was so uncomfortable, I finally went about doing it myself. I removed them one at a time, and reduced each one slowly. When it was time to remove them, she had trouble sleeping for 2 days (she had that problem while one them too). After that, her former caregiver and I both noticed that she no longer grabbed her shoulder when reaching for a card (she liked to play games), and no longer winched in pain. She still had pain (she had severe curviture of the spine and pins in where she broke her hip, so being pain free wasn't expected, we aimed for pain management and comfort. She was so much better after getting off that stuff. Since then, I have met several people who experienced much the same thing. So just be aware that more isn't always better. They may have reached their tolerance and need less, or something entirely different. It can be hard to link behavior to meds unless you are aware and pay close attention. Anytime you add, remove, reduce or increase, pay close attention (even months afterward, because you might not notice change until it has built up in the system or the system has cleared it out)(sometimes that takes time). It is well worth making notes on all of this. Many Doctors have a fear of reducing or removing, so find a doctor who will work with you on this and listens. I believe my Mom died as a result of over medicating and the wrong meds. Many doctors find it hard to listen to someone labeled with dementia, so you have to be the patients advocate and that can be hard. Be kind to yourself, and don't back down. There is a real person behind the dementia--and someday it could be one of us. Thank you for caring :)

Anonymous said almost 2 years ago

My mother has been complaining to me about the various places that she has pain........When the RN Nurse visits, she told her she do not have any pains. I had told the Nurse and her Primary Care Physican about it....The Dr. have not done much to assists her situation. For the past two weeks, she has been complaining about her tooth. She has stopped eating the way in which she did in the past... I am disabled too. She also complains about her head not feeling well. WHAT CAN I DO TO GET SOME MUCH NEEDED HELP !!! SHE HAS DEMENTRIA, AND DO NOT REMEMBER THE THINGS THAT SHE HAD COMPLAINED TO ME ABOUT... .

almost 2 years ago

the part about not admitting pain to the nurse or dr, is good to know because now i feel free to tell them that certain areas hurt him but he will not tell them. thanks

over 2 years ago

Printed to "share" also. . . ~ rocks ! !

about 3 years ago

PLEASE DON'T LAUGH or JUDGE... This is a powerful article, not only for loved ones with dementia and other cognitive impairing illnesses, but also for our BELOVED ANIMALS. For 7+ years--after caring for my late father with Alzheimer's--my husband and I have been caring for a cat with FIV (Feline Aids Virus). Early last year, during a blood test prior to getting his teeth cleaned, they found his liver values to be out of whack. This started a regimen of natural treatments that didn't resolve the issue. DON'T LAUGH...there's something to be learned here from an animal that can't communicate; much like my father couldn't express pain after one of his molars was removed. Our orange tabby got more tests--ultrasound, etc. LYMPHOMA in the spleen was the diagnosis late last year. The veterinarian (and we) thought we only had a couple months with our kitty. Well, he's still with us. Now, he experiences pain but we can't figure out where exactly. It seems to change and yet he purrs and then sometimes meows then nips"¦ These tips in the article surely apply to our loved ones as they do to the animals in our life. The key is loving patience and attentiveness.

about 5 years ago

Thanks nursefluffers

about 5 years ago

this is excellent, I am sharing this with co-workers!

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