Recognizing Pain in Someone with Dementia

People living with dementia feel pain, even when they cannot explain it clearly. A person may use different words, gestures or changes in behavior to show that something is wrong. A caregiver can notice and share those changes, but should not diagnose the cause alone.

Dementia Australia’s pain guidance recommends asking directly and seeking a doctor’s assessment when pain is suspected. The Alzheimer’s Association also notes that physical discomfort may contribute to changes in behavior. This guide offers general information, not a pain assessment or treatment plan.

Can someone with dementia feel pain without saying so?

Yes. Pain is still real when a person cannot find the words for it. They may not understand a question about a specific body part, or may have trouble telling someone when or how something hurts. Do not assume that silence means the person is comfortable.

Ask in a quiet moment using words they know. “Are you sore?” or “Does this hurt?” may be easier than a long explanation. Some people recognize “aching,” “uncomfortable” or “hurting.” Give them time to answer and accept their response without testing or correcting it.

Ask one simple question, then pause. The person may point, gesture or use a familiar phrase instead of naming a body part. Avoid rapid questions or leading them toward a yes. If they say no but you have noticed a change, share the change with a health professional rather than arguing about whether pain is present.

What changes might be worth noticing?

Look for changes from the person’s usual expression, movement and routine. They may grimace, frown, cry, moan, guard part of the body, move less, sleep differently or lose interest in food. They may also become unusually quiet, frustrated or restless.

None of these signs proves that the person is in pain. They can have many causes. A change such as refusing a meal might be related to mouth pain, but could also have another explanation. Share what you see with a doctor or nurse, and let them assess the cause.

How can I describe what I have noticed?

Write down a few facts to help explain the change. Note what happened, when it began, how often you see it and what was happening at the time. For example, mention if the person winces when standing, avoids a familiar activity or eats less than usual. Include the person’s own words or gestures.

Compare the change with the person’s normal pattern, not with someone else’s. A quiet person may not shout when they hurt; another may express discomfort by moving or speaking more. Avoid making a pain score or deciding that a behavior has one cause. The goal is to give the health professional useful observations.

If the person agrees, share the notes with the family member, nurse or doctor involved in their care. Keep the information private and pass along only what helps the person get care. Our hospital visit guide includes more on sharing communication preferences with hospital staff.

What should I do if I think the person may be in pain?

Contact a health professional and describe what changed. Pain can have many causes, including old injuries, arthritis, dental problems, infection, constipation or pressure from sitting in one position. A clinician can check the person’s health and decide what assessment or treatment fits.

Do not start a pain medicine, change a dose or stop another medicine based on a website. Some medicines can interact or be unsafe for a person with particular health conditions. Follow the person’s care plan and ask the prescriber or pharmacist when anything is unclear.

You can also reduce immediate pressure while you seek advice. Ask what would feel more comfortable, allow the person to rest and do not insist on a movement or activity that hurts. Check with a health professional before using heat, ice, massage or another treatment if you are unsure whether it is safe.

Could a behavior change be caused by something else?

Yes. Pain is one possible cause of distress, but changes can also relate to fatigue, a confusing environment, hunger, infection, medicine effects or another health problem. Look at what happened before the change and whether it repeats, but do not try to work out the medical cause by yourself.

If a person is suddenly more confused or very different from usual, tell a health professional right away. The NHS says sudden confusion needs immediate medical help. Use local emergency services or the urgent-care process where you live.

If the change is gradual or keeps returning, arrange a doctor visit and bring your notes. The guide to preparing for a doctor visit has a simple way to list questions and describe changes.

How can helpers respond in a way that feels respectful?

Tell the person what you are doing before helping. Ask permission before touching them or moving an item of clothing. Offer one small choice, such as resting now or sitting in a different place, and give time for an answer. If they decline, pause and ask a health professional for another approach.

Ask the person what wording or kind of help they prefer. With their agreement, share useful information with other trusted helpers so the person does not have to explain the same thing repeatedly. Do not talk about them as if they are not present.

Pain can be difficult to notice from the outside. Asking gently, watching for change and getting professional advice can help the person be heard without treating a sign as a diagnosis.