Assessing Pain in People with Dementia
Pain is a problem for older adults. It affects their everyday function and quality of life. Often, we think that pain is just a normal part of aging and treatment is pointless. This mindset needs to shift so that pain is managed so we can truly enjoy the Golden Years we are all heading towards.
We are all getting older. Do you want to have a painful life as an elder, especially if you can’t communicate to others what is hurting?
Pain is very often undertreated, especially in older adults with severe dementia. Self-reporting of pain is considered the gold standard, but that doesn’t mean people with dementia have to suffer in silence.
As with all older adults, those with dementia are at risk for multiple sources and types of pain, including chronic pain from conditions such as osteoarthritis and acute pain from surgery, injury, and infection.
This is why the Pain Assessment in Advanced Dementia (PAINAD) scale is so important. Any person trained to use the scale can make a pain assessment in quickly and efficiently. It helps your primary healthcare team to assess and help treat pain. It is far easier to manage pain issues before they become a crisis situation.
People with advanced dementia cannot report pain because of memory and judgement loss, confusion, reduced attention span, and language deficits. Instead, they may express pain or discomfort through a number of behaviors, such as:
1. Restless behavior
2. Moaning or yelling
3. Decreased ability to do normal activities of daily living (ie. Can’t brush teeth due to hand pain)
4. Increased verbal or physical violence towards caregivers
5. Reduced social activities and interactions with others
6. Reduced appetite
7. Increased irritability
9. Increased confusion
10. Changes in sleep patterns
11. Increased hospitalization stays
There are five specific indicators of pain in people with dementia that are used by healthcare providers to assess pain using PAINAD. The form used is :
3. Facial Expression
4. Body language
5. Comfort level
Each item is scored on a scale of 0 to 2. When scores from the five indicators are totaled, the patient's score can range from 0 (no pain) to 10 (severe pain). This is as similar to the 0-to-10 pain-rating scale commonly used.
In combination with other assessments, the PAINAD scale helps the healthcare team to figure out what are or are not pain related behaviors. Not all pain indicators for one person with dementia is the same for another person with dementia. Everyone is unique.
Many people that I work with bring in copies of medication profiles, daily routines, diet likes/dislikes, etc. when they bring in their loved one from home. One thing that is very useful as caregiver of a person with dementia is to create a Pain Profile. A simple notebook of details about what pain looks like for the person with dementia is invaluable. It helps us nurses to give better care and help patients have a better experience in the healthcare setting.
Breathing is something we take for granted. Take a moment, close your eyes, and focus on your breathing. Is there a certain pattern that emerges? How often do you take a breath? Is it deep or shallow or a combination of both? Can you hear your breath? Think about when you stub your toe on the coffee table? What does your breath feel like in that moment of acute pain (and swearing at the coffee table)?
So, what is a normal breathing? Normal breathes are 14-18 respirations a minute. This can vary on fitness level, exertion, and certain respiratory diseases. Normal breaths are neither shallow or deep. They are a happy medium, and again, they depend on what you are doing. We all have moments of shallow breathing (such as watching a scary movie) or taking in a deep breath when mediating.
Abnormal breathing comes in many forms. In relation to pain, it is often labored as if each breath is a struggle or it can be in the form of hyper-ventilating. How does the respirations of the person you are assessing compare to their normal?
Is the person moaning, crying, muttering, or swearing? What are their normal vocalizations? Personally, I mutter a lot and that is normal for me (and annoying for anyone around me). Are they too cold? Too hot? Anxious? Afraid? Happy?
Also, don’t be afraid to ask them if they are having pain. Perhaps they can’t answer verbally, but maybe they can nod or shake their head. Simple Yes/No questions can give you a wealth of information. Try asking the following questions:
1. Does it hurt?
2. Where does it hurt? (they may be able to point to the painful area)
Is the person frowning or grimacing? Is that little furrow between their eyes normal or is that new?
As with all things, facial expression is subjective to the person’s normal facial expression. My friends laugh that I’m so hyper-organized that my resting face, constipated face, thinking face, and b#@$h face are all the same face. Funny how no one can mistake my “stubbed my toe and angry at the coffee table” face for anything, but pain.
Movement can increase pain. For example, the person may resist help with getting dressed due to shoulder pain and refuses to put on a close-fitting t-shirt. Are they clenching their fists or pushing caregivers away? Are they avoiding the bathroom due to hip or knee pain? Are they rigid when you are trying to help them?
How are they mobilizing? Are they limping or guarding an area? Are they staying in bed longer than normal due to fear of the pain of getting out of bed? Are they struggling to get out of a chair or off the toilet?
Sometimes, we jump too fast to the conclusion of physical pain. Perhaps it is an emotional pain. Do they need a hug and someone to sit with them, holding their hand?
In these times of COVID, a face mask can be terrifying for someone with dementia. They can’t read your facial expressions behind a medical mask. They have lost that valuable piece of connection and communication with you.
Imagine what it must be like to not be able to speak, your vision is reduced to a tunnel-like space, you are surrounded by strangers whose voices are muffled by medical face masks and they are trying to get you to take a spoonful of medications. Wouldn’t you get a little anxious and inconsolable too?
SCORING THE PAINAD
Using the definitions provided in the tool, raters assign a score (ranging from 0 to 2) for each of the five areas assessed. These five scores are then totaled. The final score will range from 0 to 10, with 0 indicating no pain and 10 indicating severe pain.
Any item scored as 1 or 2 indicates that the person is in some type of pain or discomfort.
WHAT DO I DO WITH THE RESULTS?
A total score of 1 or 2 warrants comfort measures. Would repositioning or distraction work? How about a mild analgesic, such as acetaminophen)? Maybe a warm blanket fresh from the dryer applied to the painful area? What has worked in the past?
A score of 5-10 is considered moderate-to-severe pain and warrants stronger analgesia, such as an opioid, as well as comfort measures.
Make sure you reassess the pain the person is experiencing. What worked? What didn’t? Does the person need something for pain before going to bed or do they need it before getting up in the morning?