Memory Digest

Recognizing Pain in Dementia

People with dementia often can't say they're in pain, so it shows up as agitation, withdrawal, poor sleep or refusing care; learn the signs, simple observation tools such as PAINAD, and how to work with the care team.

Last reviewed: October 2026

Pain is common in older adults: arthritis, back problems, dental problems, constipation, pressure sores and old injuries. People with dementia feel pain too. But as the disease progresses, they may lose the words to describe it, forget that they hurt, or not connect the feeling with its cause. As a result, pain in dementia is often missed and undertreated, and it can show up as "behavior."

How pain may show up

Instead of saying "my knee hurts," a person with dementia might:

• Become agitated, irritable or aggressive, especially during bathing, dressing or moving (see Agitation and Aggression)
• Resist or refuse care, such as pulling away when touched
• Withdraw, becoming quiet, sleepy or uninterested in usual activities
• Call out, moan, groan or cry
• Grimace, frown or look frightened
• Rub, guard or hold one part of the body
• Move differently: limping, rocking, restlessness, staying very still or refusing to walk
• Sleep poorly or wake up at night
• Eat less (a sign of dental or mouth pain, among other things)
• Show more confusion than usual

Any sudden change in behavior is worth thinking about as possible pain, or another medical problem such as an infection (see UTIs and Sudden Confusion in Older Adults) or constipation, before it's chalked up to the dementia.

Simple observation tools

Because self-reporting becomes unreliable, nurses and doctors use observation scales. One of the most widely used is PAINAD (Pain Assessment in Advanced Dementia), developed in 2003 for people who can't communicate their pain. It scores five things from 0 to 2 each, for a total of 0 to 10:

1. Breathing (normal, labored, noisy)
2. Negative vocalization (none, occasional moans, repeated calling out or crying)
3. Facial expression (smiling or relaxed, sad or frightened, grimacing)
4. Body language (relaxed, tense or fidgeting, rigid, clenched fists, striking out)
5. Consolability (no need to console, distracted by voice or touch, unable to console)

Families can use the same ideas informally. Watch the person at rest and during movement, such as getting out of a chair or during a bath, and note what you see. Higher or rising scores, or a change after a pain medicine, give the care team useful information. Don't use a score alone to decide on treatment; share your observations with the doctor or nurse.

Ask in simple ways

Many people with mild to moderate dementia can still tell you about pain if asked simply and in the moment:

• "Does it hurt?" rather than "How has your pain been this week?"
• Point to a body part: "Does it hurt here?"
• Use a picture scale of faces from smiling to crying
• Watch their face and body as they answer

Common hidden causes to check

• Teeth and mouth: cavities, gum infections, poorly fitting dentures
• Constipation: very common and very uncomfortable
• Arthritis and joint pain, old fractures, foot problems
• Skin: pressure sores, tight shoes or clothing
• Urinary problems or a full bladder
• Headaches and eye problems
• A fall that wasn't seen, which can cause a fracture

Working with the care team

1. Keep notes: what you saw, when, during what activity, and what helped.
2. Ask directly: "Could this behavior be pain?"
3. Ask about regular dosing. For ongoing pain, doctors sometimes recommend giving a pain reliever on a schedule rather than only "as needed," since the person may not be able to ask. Acetaminophen (Tylenol) is often tried first in older adults; follow the doctor's instructions on dosing.
4. Watch for side effects of stronger pain medicines, such as drowsiness, constipation, falls or more confusion, and report them.
5. Ask whether a behavior medicine is really needed. Antipsychotic drugs carry serious risks in dementia and don't treat pain. Treating the pain may calm the behavior instead (see Antipsychotics and Dementia: Risks).

Never give new medicines, including over-the-counter ones, without checking with the doctor or pharmacist, since some (such as certain sleep aids and allergy pills) can worsen confusion (see Medications That Can Affect Memory).

Comfort measures that help

• Warm or cool packs (checked for safe temperature), gentle massage and repositioning
• Supportive pillows, a comfortable chair, and soft, loose clothing
• Moving slowly during care, and explaining each step
• Calm music and a quiet room
• Gentle activity, like a short walk, to ease stiffness (see Activities for People with Dementia)

Pain near the end of life

In late-stage dementia, comfort becomes the main goal. Hospice teams are skilled at recognizing and treating pain in people who can't speak, and Medicare covers hospice care for people who qualify (see Hospice and End-of-Life Care and Late-Stage Dementia).

The bottom line

When someone with dementia becomes upset, withdrawn or resists care, ask "Could they be hurting?" Watching closely, using simple tools like PAINAD and working with the care team can relieve suffering that the person can no longer put into words.

Sources

1. Warden V, Hurley AC, Volicer L. Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. Journal of the American Medical Directors Association, 2003
2. Medicare.gov: Hospice Care Coverage

Not medical advice. This article is general information, not a diagnosis or treatment plan for any individual. Talk with a doctor about your situation.

Related articles

• Managing Challenging Behaviors
• Agitation and Aggression
• Late-Stage Dementia
• Hospice and End-of-Life Care
• Communicating with Someone with Dementia