How to Recognize Signs of Pain in People With Dementia

Pain matters. The discomfort of it directly affects quality of life, while pain is also a natural signal that something is wrong. New or unexpected pain might even suggest an unrecognized infection or illness that is putting the senior at risk.

As such, it’s crucial to recognize pain and respond to it promptly.

Doing so can be tough as a caregiver, especially if the person you’re caring for has dementia.

In the later stages of the condition, the person with dementia might not be able to communicate about their pain at all. This could be because they don’t fully recognize or understand the sensations or because they can no longer communicate verbally.

There may be challenges earlier in the process too – as some seniors will hide or deny pain from their loved ones. This could be an attempt to appear tough or to act like they’re as healthy as they always were. Or, they may associate showing pain with being weak.

Whatever the situation, caregivers need to find ways to recognize pain in people with dementia. Doing so involves paying close attention to a variety of clues.  

Signs of Pain for People with Dementia

What They Say

First, you might be able to to ask the person whether they’re experiencing pain. Asking specific questions is most helpful, such as asking “does it hurt here?” or “does your leg ache?”.

People early in the dementia journey may be able to answer these questions, even if they no longer tell you about their pain on their own.

But, crucially, an answer of “no” here doesn’t mean no pain. It may simply mean the person doesn’t recognize their pain. So, you should look for other signs of pain as well.

In other cases, the senior might tell you that something is wrong or that they don’t feel good, without specifically saying they’re in pain.

Vocalization

Vocalization refers to the noises that people make. Negative vocalizations include things like moaning, groaning, calling out, or crying.   

Facial Expression

If a person is experiencing pain, they may grimace, frown, furrow their eyebrows, or show similar movements. Basically, any sign of distress on the face could be an indication of pain.

This behavior might be difficult to spot if the pain is intermittent, so you may need to watch closely.

Breathing

Breathing can also change with pain. Significant pain can lead to shorter breaths and even hyperventilation. There may also be gasp-like breaths, where the senior takes in air quickly in response to pain.

Body Language

A person’s body language provides additional indications. Seniors in pain will often appear more tense or even rigid. They may fidget more than normal or even clench their fists.

Such responses may vary depending on where the pain is and its consistency.

Physical Signs

There are signals on the body that might accompany pain as well, including paleness, flushing, and increased sweating.

You might also see signs that suggest the cause of pain. For example, someone experiencing pain in their left leg is likely to favor their right leg when walking. Someone whose pain is related to an infection may also have a fever and a cough.  

Behavior Changes

The previous pain signals may be difficult to spot if the pain is mild or intermittent.

So… pay attention to any changes in behavior. This includes shifts in appetite, changes to a person’s sleep patterns, or an unwillingness to do activities they previously enjoyed.

Thinking about the specific changes may also provide clues about where the pain is coming from. For example, if the senior suddenly becomes much more resistant to going to the bathroom, they may have a urinary tract infection (a common issue due to incontinence and hygiene challenges in people with dementia). Or, if they spend much more time sitting in a chair, getting up may be more painful than it was previously.

Sometimes pain can also lead to problematic behaviors, like screaming or striking out, or depressive ones, like being very withdrawn.

Other Things to Consider

There are a few extra areas to consider when looking at these signals of pain.

Think About Their Baseline

Pain causes changes in behavior, vocalization, body language, and the like. Because we’re talking about changes, you’ll need to compare how the senior is now versus their baseline (i.e. how they normally are).

This baseline differs between people and will also change as dementia progresses.

Be Flexible with Interpretation

People in pain may not show signs in all of the areas we’ve discussed. Or, their signs of pain may be very intermittent.

So, don’t write off changes to body language or behavior, even if there are no other indications of pain. There could be something serious going on that you’re just not aware of.

Use a Tool

The issue of identifying pain in dementia is common and there are some tools that can help. One is called Pain Expression in Advanced Dementia (PainAD). PainAD considers many of the areas we’ve been discussing in this article and combines them into an overall measure of pain severity.

Other tools are also being developed, such as an app called PainChek, which uses AI to determine whether someone is in pain from their facial expressions. However, that app is still in the testing phase and isn’t widely available.

Causes of Pain in People with Dementia

Once you’ve identified that the person with dementia is experiencing pain, the next question is what to do about it. You’ll typically need to get a doctor involved in this process, to help determine the potential issues and how they might be treated.

Common causes of pain to consider include:

• Underlying health conditions or infections. Health conditions (like arthritis) and infections (like UTIs) often lead to pain. The associated pain may also change over time, especially if the senior has multiple interacting conditions.
• Constipation. Being constipated can cause considerable discomfort. The issue is more likely of the senior doesn’t get enough fiber or is dehydrated.
• Inactivity. Being inactive can also cause pain, especially if the senior spends a long time sitting or lying in the same position. Encouraging them to move regularly can help.
• Poor positioning. The way a person sits or lies can easily lead to pain. The right cushions reduce the risk of this issue. You may also need to move the senior regularly to prevent bed sores and other sources of pain.
• Rashes. Seniors with dementia may also develop rashes, which can be painful. These are sometimes the result of being left in soiled incontinence underwear too long or from not being able to clean themselves well after using the bathroom.
• Mouth problems. Problems with the gums and teeth can be incredibly painful. This is a big issue for people with dementia, as the condition makes it difficult to maintain good oral hygiene.
• Dementia itself. Some theories suggest that the neurological changes associated with dementia affect pain centers, making people with dementia more sensitive to pain. This could mean that they experience notable pain from seemingly minor issues.

Final Thoughts

People in the later stages of dementia may not be able to say they’re in pain, but their breathing, vocalizations, facial expressions, body language, and behaviors all provide important clues. In essence, you need to put your detective’s hat on and look for signs your loved one is experiencing pain.