Why Pain Is Often Missed and What Caregivers Need to Know

Pain is one of the most overlooked causes of behavior changes in people living with dementia.

Many caregivers are surprised to learn that pain can cause agitation, resistance to care, poor sleep, appetite changes, wandering, increased confusion, and even aggressive behavior.

The challenge is that as dementia progresses, many people lose the ability to explain what hurts. Instead of saying, “My back hurts” or “My knee is bothering me,” the pain may show up through their actions and behaviors.

This can leave caregivers frustrated, exhausted, and searching for answers when the real problem may be something as simple as untreated pain.

Why Pain Is Often Missed in Dementia

Most of us assume that if something hurts, we will tell someone.

Unfortunately, dementia affects the brain’s ability to recognize, interpret, remember, and communicate pain.

As dementia progresses, your loved one may no longer be able to:

• Identify where the pain is located
• Describe the type of pain
• Remember how long it has been hurting
• Tell someone they are uncomfortable
• Understand questions about pain

Instead, pain may appear as:

• Agitation
• Restlessness
• Yelling out
• Increased confusion
• Resistance to care
• Sleep problems
• Poor appetite
• Refusing to walk
• Increased wandering
• Sudden behavior changes

Many caregivers spend weeks trying to manage a new behavior only to discover the real problem was pain all along.

Could Pain Be Causing the Behavior?

One of the first questions caregivers should ask when behavior suddenly changes is:

“Could this be pain?”

If someone who has been cooperative suddenly becomes resistant, agitated, or withdrawn, pain should always be considered.

Behavior is often communication.

When a person can no longer tell us what is wrong, they may show us instead.

Understanding Types of Pain

Pain is your body’s alarm system. It tells you something’s wrong. It can be:

• Acute pain – New, short-term (like a cut, bruise, or toothache).
• Chronic pain – Lasting longer than 3 months (like arthritis, back pain, or cancer).

People describe pain in different ways: aching, burning, cramping, dull, sharp, throbbing. These clues can help doctors figure out the cause and best treatment.

Common Causes of Pain in Alzheimer’s or Dementia

Pain can come from many different sources.

Arthritis

Arthritis is one of the most common causes of chronic pain in older adults.

Stiff joints, aching knees, and painful hips can make everyday activities difficult.

Old Injuries

Previous fractures, back injuries, surgeries, and joint replacements can become more painful over time.

Constipation

Constipation can cause significant discomfort, abdominal pain, agitation, and appetite changes.

Many caregivers don’t realize bowel issues can trigger behavior changes.

👉 Related Article:
The Truth About Dementia Poop Problems

Dental Problems

Cavities, loose dentures, gum disease, and mouth sores can make eating painful.

Pressure Areas

People who spend long periods sitting or lying down may develop painful pressure areas.

Urinary Tract Infections

UTIs can cause pain, burning, increased confusion, and agitation.

New Medical Problems

Sometimes pain may be the first sign of an illness or injury that has not yet been diagnosed.

Signs Someone With Dementia May Be in Pain

As dementia progresses, caregivers often need to become detectives.

Watch for:

✅ Facial grimacing

✅ Frowning

✅ Moaning

✅ Groaning

✅ Restlessness

✅ Pacing

✅ Increased agitation

✅ Pulling away when touched

✅ Refusing personal care

✅ Difficulty sleeping

✅ Appetite changes

✅ Increased confusion

✅ Refusing to walk

✅ Holding or guarding a body part

These signs become especially important during the middle and late stages of dementia.

🕵️ The Dementia Caregiver Must Become a Detective

One of the hardest parts of caring for someone with dementia is learning that you can no longer rely on them to tell you what is wrong.

As dementia progresses, many people lose the ability to explain their symptoms. They may not be able to tell you they are in pain, constipated, hungry, tired, dizzy, cold, anxious, or sick.

Instead, they communicate through their actions and behaviors.

This means the caregiver must become a detective.

When a behavior suddenly changes, your job is to look for clues.

Ask yourself:

• Are they in pain?
• Could they be constipated?
• Do they have a urinary tract infection?
• Are they hungry or thirsty?
• Did they sleep poorly last night?
• Are they too hot or too cold?
• Is something in their environment upsetting them?
• Has there been a change in routine?
• Could a medication be causing side effects?

Many caregivers make the mistake of assuming every new behavior is simply “the dementia getting worse.”

Sometimes it is.

But many times there is an underlying reason for the change.

I have seen people become extremely agitated because they were constipated.

I have seen people refuse care because moving caused pain.

I have seen someone suddenly become more confused because they developed an infection.

I have even seen behavior improve dramatically once the real problem was identified and treated.

The behavior is often the clue.

Your job is to figure out what the behavior is trying to tell you.

Looking for Pain Clues

When you’re trying to determine if pain may be contributing to a behavior change, pay attention to the following clues:

📍 Location

Does your loved one:

• Hold or rub a particular body part?
• Guard an arm, leg, hip, or shoulder?
• Avoid using one side of their body?
• Pull away when a certain area is touched?

Sometimes they can’t tell you where it hurts, but they may show you.

⏰ Timing

When does the behavior occur?

• Is it worse in the morning?
• Does it increase at night?
• Does it happen after meals?
• Does it occur during bathing, dressing, or transfers?
• Does it happen after walking or activity?

The timing often provides important clues.

📊 Severity

Watch their:

• Facial expressions
• Body movements
• Vocalizations
• Agitation level
• Ability to participate in activities

These observations can help you determine if the discomfort appears mild, moderate, or severe.

🔍 Triggers and Relief

Pay attention to what makes the behavior worse or better.

Ask yourself:

• Does resting help?
• Does changing positions help?
• Does movement make it worse?
• Does pain medication seem to help?
• Does a heating pad or gentle massage provide relief?

The more information you can gather, the easier it will be for the doctor to identify possible causes.

The better detective you become, the more successful you will be at identifying problems early and helping your loved one remain comfortable.

Because pain is often difficult to recognize in someone with dementia, healthcare professionals use special assessment tools to help identify possible discomfort. One of the most common is the PAINAD Scale.

Pain Assessment Tools That May Help Caregivers

Because many people with dementia lose the ability to clearly describe their pain, healthcare professionals often use special pain assessment tools to help identify discomfort.

These tools can also help family caregivers recognize when pain may be contributing to behavior changes.

Remember, no single tool is perfect. The goal is simply to help you become more aware of signs that your loved one may be uncomfortable.

PAINAD Scale (Pain Assessment in Advanced Dementia)

PAINAD (Pain Assessment in Advanced Dementia) Scale:

The PAINAD Scale is one of the most commonly used pain assessment tools for people with moderate to severe dementia.

Instead of asking someone to rate their pain, the PAINAD looks for signs such as:

• Breathing changes
• Negative vocalizations (moaning, crying out)
• Facial expressions
• Body language
• Ability to be comforted

Healthcare professionals often use this tool when someone can no longer communicate their pain effectively.

Abbey Pain Scale

Abbey Pain Scale:

The Abbey Pain Scale was developed specifically for people who cannot easily communicate their pain.

It focuses on changes such as:

• Facial expressions
• Vocalizations
• Body language
• Behavioral changes
• Physical changes
• Physiological changes

This scale can be especially helpful when a caregiver notices a sudden change in behavior but is unsure if pain is the cause.

Faces Pain Scale

Faces Pain Scale:

Some people with early-stage dementia can still identify how they feel but may struggle to describe it.

The Faces Pain Scale uses pictures of faces ranging from comfortable and relaxed to very distressed.

The person simply points to the face that best matches how they feel.

This can be much easier than asking them to rate pain on a scale from 1 to 10.

😊 😐 😟 😣 😭

Many caregivers find this method simple and effective during the earlier stages of dementia.

FLACC Scale

FLACC Scale:

The FLACC Scale is another observation tool that can be useful when someone cannot communicate verbally.

FLACC stands for:

F – Face

L – Legs

A – Activity

C – Crying

C – Consolability

Each category is scored based on what you observe.

The higher the score, the greater the likelihood that pain may be present.

Which Pain Scale Is Best?

The best pain scale is the one that helps you recognize changes and communicate concerns to the healthcare team.

For many family caregivers:

✔ Early Stage Dementia → Faces Pain Scale

✔ Middle Stage Dementia → Abbey Pain Scale

✔ Late Stage Dementia → PAINAD or FLACC

What matters most is not which scale you use, but whether you notice changes and share those observations with the doctor.

📒 Track Pain Patterns Over Time

Pain is often easier to identify when you track changes over several days or weeks.

Consider documenting:

• Agitation
• Sleep changes
• Appetite changes
• Mobility changes
• Facial expressions
• Possible pain triggers
• What seemed to help

Keeping a record can help you identify patterns that may otherwise be missed.

The Dementia Caregiver Notebook includes tracking forms that help caregivers monitor changes and provide valuable information to doctors and healthcare professionals.

👉 Learn More About the Dementia Caregiver Notebook

Pain is just one of many medical issues that can affect behavior. You may also find these articles helpful:

👉 Dementia Doctor Visits: What Caregivers Need to Know

👉 The Truth About Dementia Poop Problems

👉 Dehydration and Dementia

👉 Dementia Hospital Stays: What Caregivers Need to Know

👉 How to Get Someone With Dementia to Cooperate

🧰 Free Dementia Caregiver Tools

Pain is often connected to many other caregiving challenges.

You can find additional free forms, checklists, and caregiver resources in the Dementia Caregiver Toolbox.

Helpful resources include:

✔ Doctor Visit Preparation Forms

✔ Hospital Go-Bag Checklist

✔ Dementia Care Planning Checklist

✔ Emergency Planning Resources

✔ Caregiver Support Tools

👉 Visit the Dementia Caregiver Toolbox
https://alzheimersinyourhome.com/caregiver-support-toolbox/

Frequently Asked Questions About Dementia and Pain

Can dementia itself cause pain?

Dementia does not usually cause physical pain directly. However, people living with dementia often have other medical conditions that cause pain and may have difficulty communicating it.

Why does pain cause agitation?

Pain creates discomfort, fear, frustration, and confusion. When someone cannot explain what is wrong, those feelings may appear as agitation, resistance, or behavior changes.

What are the most common signs of pain in someone who cannot communicate?

Watch for facial expressions, body language changes, restlessness, sleep disturbances, appetite changes, moaning, or increased confusion.

Should I tell the doctor about behavior changes?

Absolutely. Sudden behavior changes may be caused by pain, illness, infection, constipation, medication side effects, or other medical problems.

Can untreated pain make dementia symptoms worse?

Yes. Untreated pain can increase confusion, agitation, sleep problems, depression, appetite loss, mobility decline, and caregiver stress.

Final Thoughts

Pain can be difficult to recognize when someone is no longer able to tell us what hurts.

As caregivers, we must learn to look beyond the behavior and search for possible causes.

The next time your loved one becomes agitated, refuses care, sleeps poorly, or experiences a sudden change in behavior, pause and ask yourself:

Could this be pain?

That simple question may help you uncover a problem that can be treated and improve both your loved one’s comfort and quality of life.