When Your Loved One Can’t Say “It Hurts”: Recognizing Pain in Dementia

Recognizing pain in dementia means watching the face, body and behavior, because your loved one may no longer be able to say “it hurts.” Grimacing, moaning, guarding a body part, restlessness, refusing food or sudden agitation can all be signs. Note what you see and when, offer comfort, and ask the doctor for a pain evaluation.

This guide explains why pain hides behind dementia, the signs to watch for, common causes, how to respond in the moment, how to keep useful notes for the doctor, and when to call. You know your loved one better than anyone, so your observations matter.

Why pain can go unnoticed in dementia

Dementia does not stop a person from feeling pain. It affects their ability to understand it and tell you about it.

The National Institute on Aging notes that people who have dementia may not be able to tell you when they’re in pain. Instead, discomfort often comes out as behavior: restlessness, calling out, pulling away or refusing care. The NIA also lists pain among the health problems that can cause distressing behaviors. It is easy to blame these changes on “the dementia” when the real problem is something that hurts.

Signs of pain to watch for

When words fail, the body and behavior speak.

The NIA lists many of these, including refusing to eat, which may point to tooth or mouth pain.

Look at timing

Patterns are clues. Wincing only when standing suggests hips, knees or feet. Pulling away when an arm is lifted during dressing may point to a shoulder. Refusing to chew may mean a dental problem. Getting upset only on the toilet can suggest constipation or a urinary problem.

Common causes of discomfort in older adults with dementia

Because your loved one cannot tell you, it helps to know the usual suspects:

• Stiff or sore joints
• Tooth, gum or denture problems
• Constipation
• Urinary tract infections
• Skin soreness from sitting or lying in one position
• Old injuries, or a new one from a fall
• Shoes that rub or clothing that is too tight

Florida heat can add dehydration and skin irritation to the list. Any of these can make a person restless and unhappy long before anyone guesses the cause.

Recognizing pain in dementia when behavior changes

Any new or worsening behavior deserves a closer look for a physical cause before it is written off.

The Alzheimer’s Association advises checking for pain, hunger, thirst or a full bladder when a person is anxious or agitated, and seeing the doctor to rule out physical causes. If your loved one suddenly resists bathing, strikes out during dressing or paces at night, ask yourself what might hurt.

A quick checklist when behavior changes

1. Is anything new: a fall, a new medicine, a new pair of shoes?
2. When did they last have a bowel movement?
3. Are they eating and drinking normally?
4. Does any area look red, swollen or bruised?
5. Do they flinch when a certain spot is touched or moved?

Write down what you find.

Gentle ways to respond

Approach slowly

Come from the front, let your loved one see your face and hear your voice before you touch them. Hurting and fear feed each other, so calm helps.

Ask simply

Short questions sometimes reach through, even late in the illness: “Are you hurting?” or “Show me where.” Point to parts of your own body, or use a simple picture of faces from smiling to frowning.

Offer comfort

Help them change position, add a cushion or a supportive chair, loosen tight clothing, offer a drink and keep the room quiet. If the doctor approves, a warm or cool compress may help.

Do not guess with medicine

Never give over-the-counter pain relievers, or extra doses of prescribed ones, without checking with the doctor or pharmacist first. Some medicines can interact or worsen confusion.

Preventing everyday discomfort

Some sources of discomfort can be headed off before they start.

Mouth and teeth

Keep up dental visits, help with brushing each day and check that dentures fit. A sore mouth often shows up as refusing food.

Bowels and fluids

Keep a simple record of bowel movements and offer drinks through the day, especially in Florida heat. Ask the doctor what to do if constipation becomes a pattern.

Position and movement

Encourage regular changes of position and short walks if your loved one is able. Supportive chairs and cushions reduce pressure on the same spots.

Skin and feet

Bathing and dressing are good times to look for redness, bruises, blisters or sores. Check that shoes fit and socks are not bunched.

Comfortable clothing

Soft, loose, tag-free clothes and elastic waists avoid rubbing and pinching that a person may not be able to describe.

Keep notes the doctor can use

Your observations are some of the best information a doctor will get. Note what you saw, when it happened, what was going on at the time and what helped. A printable dementia care log makes this easy. Bring it to appointments and hospital visits, and use our hospital information sheet to describe how your loved one shows pain.

Questions to ask at the appointment

Bring your notes and a short list of questions. For example:

• Could discomfort explain the changes we are seeing?
• What could be causing it, and what tests would help?
• What treatment is safe with their other medicines?
• How will we know if the treatment is working?
• What should make us call back sooner?

Ask for the plan in writing so everyone who helps at home can follow it.

Example: an evening in Fort Lauderdale

This is an illustrative example, not a real client story.

A husband notices his wife has started pushing him away when he helps her into her nightgown. She had always been calm at bedtime. He sees that she winces when her right arm is raised.

He switches to front-opening nightwear and notes the pattern in the care log. Their companion’s visit note mentions the same wince during an afternoon walk. He calls the doctor, who examines her shoulder and suggests a treatment plan. Bedtime becomes calm again.

When to call the doctor

Pain should never be dismissed as “just the dementia.” Contact your loved one’s doctor if you notice:

• A sudden change in behavior or confusion
• Signs of pain that do not ease with comfort measures
• Fever, a possible infection or a fall
• Refusing food or drink

The NIA suggests asking the health care team for a pain evaluation and a treatment plan. Call 911 for chest pain, trouble breathing, a serious fall or sudden weakness. This article is general information, not medical advice. Read more about infections and sudden confusion.

You are their voice

Being the interpreter of someone else’s discomfort is a heavy, loving job. No one reads every sign perfectly. The fact that you are watching already makes a difference. A consistent companion adds another pair of eyes who knows what is normal for your loved one and notes changes after each visit.

Conclusion

Recognizing pain in dementia takes close watching, because the signs are in faces, sounds and behavior rather than words. Check for pain whenever behavior changes, offer comfort, keep notes and involve the doctor early.

Untreated pain can make confusion and agitation worse, so speaking up matters.

If you would like a steady companion who knows your loved one’s normal and notices changes, get 3 free caregiver profiles within 48 hours or call (689) 333-6079. See our dementia companion care.