Detecting Pain in Persons Living with Dementia

It was a scream that I’ll never forget! My mother had dislocated her shoulder, or so it appeared. Mom was probably in the mid-stages of her dementia at that time. I could see that she was physically in pain, but not so much that it seemed unbearable. I quickly made an appointment to take her to my orthopedic doctor for a diagnosis and treatment. Fortunately, he could see her early the next day. At the doctor’s office an attendant took x-rays. Then the orthopedist examined her. He said that he could make an adjustment to put her shoulder back in place. He asked me to step out of the exam room and return to the waiting area, and it would take only a few minutes. I was sitting in the waiting room when I heard this “blood-curdling” scream. I rose quickly to check what was happening. The doctor came out of the exam room with Mom and said that she would be okay. The pain stopped once her shoulder joint was back into place. Mom seemed to be all right after that, thank goodness!  Sept 9 Man in pain

What Is Pain? 

The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.” We feel pain when a signal is sent through nerve fibers to the brain for interpretation. Pain, however, is not just a physical sensation. It can affect a person’s emotional and mental wellbeing and quality of life.

Pain can be a serious problem for the elderly. They often suffer from problems such as: osteoarthritis, dental pain, mouth ulcers from poorly fitting dentures, hemorrhoids, constipation, fibromyalgia, diabetic postherpetic neuralgia, urinary tract infections. When combined with dementia, it can be difficult to locate the source of the pain, especially if the person is at the stage in the dementia where they are unable to communicate that they hurt or are feeling ill.

It is a myth that people with dementia do not feel pain. In fact, it is estimated that 50% of persons with dementia suffer chronic pain that goes undetected. I’ve also read statistics reporting that about 80% of persons living in long term care facilities have pain.

According to one of our local neurologists, Dr. Hilary P. Glazer, “Pain is often a big part of any stage of Parkinson’s type of Dementia (Lewy Body, Corticobasal, Progressive Supranuclear Palsy, Parkinson’s Dementia) because of their stiff body and not moving. Pain is also often a big part of late-stage dementia, as people are often sitting or lying in bed most of the day. Inactivity often leads to pain.”

Determining if your loved one is experiencing pain may be up to you. This takes becoming a bit of a “detective” and observing the signs. When they can’t self-report, observation and detection of pain-related behavior is a valuable approach to identifying pain. I am not a medical professional, but I hope that these tips I’ve garnered from a number of resources (American Geriatrics Society,  Australian Pain Society, and the University of Alberta) can help you to identify if your loved one is suffering.

Sept 9 Woman in painWays to Recognize Pain

Pain is a subjective experience. Your loved one may not remember that they have done something to cause pain. You have observed that something is wrong. Where do you begin? Here are some clues that something is wrong.

  • Their Past Reactions

Your knowledge of their typical reactions is very important. You can begin by asking yourself how did they react in the past when they were in pain? Did they hold or rub their arm or head? Did they pace, find it difficult to settle, become angry or swear? Do they seem depressed?

Constant pain can be the cause of the depression. Are they fearful of you touching a particular part of their body? Are they running a temperature? Do they have a history of migraines, mouth ulcers, urinary tract infections, etc.?

  • Three Simple Pain Questions to Ask

Your loved one may only be able to tell you that they are in pain at the moment you ask them, but can’t give you details about when it occurs, or how severe it is. You may want to point to areas of your body and ask simple questions that they can answer “yes” or “no.” Here are three suggestions of questions to ask:

Do you have any aches or pains today?

Can you tell me about your pain, aches, discomfort, soreness?

Would you say your pain was mild, moderate, or severe?

  • Facial Expressions

These are some common facial expressions that could indicate the person is in pain:

Frowning, grimacing, wrinkled forehead, rapid blinking, scowling, clenched teeth, frightened look, tears, closed/tightened eyes, any distorted expression.

  • Verbalization, Vocalization

Sighing, moaning, groaning, grunting, calling out, screaming, swearing, noisy breathing, being verbally abusive, asking for help, or being unusually quiet.

  • Body Movements

Rigid, tense body posture, guarding parts of their body, strange body positions when moving, fidgeting, increased pacing, rocking back and forth, changes in how they walk, legs/arms drawn up in a fetal position.

  • Changes in Daily Activities

Refusing care, becomes disruptive or combative, becomes withdrawn, becomes more aggressive, appetite changes, changes in rest periods, increased wandering, socially inappropriate behavior.

  • Changes in Mental Status

Deterioration in normal cognitive status, increased confusion, irritability or distress.

  • Physiological and Physical Changes  Sept 9 thermometer

Do they have bruising or skin tears? Are they running a temperature, perspiring, flushing? Do they have pallor?

 Keeping a Pain Log

Keep careful notes and record anything you do that seems to reduce or alleviate their pain behavior. Bring your log with you when you take your loved one for a diagnosis so that you can describe in detail how it seems their pain is experienced. Also note what, if anything, relieves the pain for them. Write down all medications and dosages they take. These notes can be helpful to a health care provider, especially if your loved one can’t describe it to them.

Assessment and Treatment 

If you discover what is causing their pain, do whatever you can to eliminate the source, if possible. Take action before their pain becomes unbearable by getting them to a doctor as soon as possible for an assessment. Assessment of pain may require a multifaceted and comprehensive assessment by medical professionals, sometimes involving extensive testing, x-rays, MRI’s, pain medication, etc.

When treating people with pain and dementia, Dr. Glazer indicates that in her practice they try to avoid opiates and sedatives: “The best interventions are often relaxation exercises, stretching, physical therapy, and non-drug interventions (such as joint injections).”

Let your loved one know that you are aware of their pain and are going to help them. Try to make them as comfortable as possible when they sit in a chair or lie in bed. You want to do all you can to ensure that they are as pain free as possible.

I wish you peace, patience, joy and compassion in your caregiving today and every day!

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The University of Iowa’s website,, has sixteen “Fast Facts” sheets on a variety of types of pain. Check it out here:

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MDCalc is a medical reference for clinical decision tools and content. Here is a pain tool you might find helpful:

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The University of Alberta has a PAINAD Tool Questionnaire available to download:

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Watch this Alzheimer’s Medical Advisor YouTube video on pain and detecting pain: Then download a checklist of “Common Signs of Pain in Persons with Limited Ability to Communicate Using Words:”

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Dementia-care education specialist Teepa Snow demonstrates how to recognize pain in persons in late stage Alzheimer’s:


  1. says

    As a caregiver. It is really important for us to know others who care for their elderlies what should they know about the pain that they are going through. Anyways, well-informative post. Will surely share this! :)

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