Pain in Dementia: Helping People Living With Dementia Communicate Discomfort

Pain in dementia is one of the most overlooked challenges caregivers face.

People living with dementia experience pain, illness, injury, and physical discomfort just like anyone else. The difference is that dementia can sometimes make recognizing and communicating those problems much more difficult.

A headache.

A urinary tract infection.

Arthritis pain.

Dental discomfort.

An injury from a fall.

A medication side effect.

When someone struggles to communicate what they are feeling, caregivers may not realize something is wrong until the situation has worsened.

Not because caregivers missed something.

But because pain in dementia often does not look the way people expect.

Why Pain in Dementia Can Be Difficult To Recognize

Many caregivers expect someone experiencing pain to say:

“My knee hurts.”

“My stomach hurts.”

“I don’t feel well.”

People living with dementia may not always be able to explain discomfort clearly.

Instead, pain in dementia may appear as:

✔ Increased agitation

✔ Restlessness

✔ Withdrawal

✔ Refusing care

✔ Increased confusion

✔ Sleep changes

✔ Reduced appetite

✔ Repetitive behaviors

✔ Sudden behavioral changes

Caregivers often know something feels different.

They simply do not always know what is wrong.

Pain in dementia can sometimes become more serious before the source of discomfort is discovered.

When Caregivers Know Something Is Wrong But Cannot Find The Cause

One of the greatest frustrations caregivers face is recognizing discomfort but not knowing where it is occurring.

Someone may suddenly avoid walking.

Someone may resist getting dressed.

Someone may become distressed during meals.

Someone may become increasingly withdrawn.

The caregiver knows something has changed.

But pain in dementia can make identifying the location of discomfort extremely challenging.

Questions like:

“Does your stomach hurt?”

“Is your leg bothering you?”

“Do you have a headache?”

may not always lead to clear answers.

For individuals who are minimally verbal or nonverbal, this challenge can become even greater.

Pain In Dementia Does Not Mean Communication Is Gone

One important thing caregivers should remember:

Loss of speech does not automatically mean loss of communication.

People living with dementia often continue communicating throughout the progression of dementia.

The pathway may simply change.

The Preserved Abilities Method™ focuses on identifying retained abilities that may continue supporting communication and engagement.

When caregivers better understand preserved abilities, it may help create additional opportunities to recognize pain in dementia sooner.

Preserved Abilities May Help Improve Communication About Pain In Dementia

Different preserved abilities may create different opportunities to communicate discomfort.

Someone with stronger Visual–Spatial abilities may communicate more effectively using visual supports.

Caregivers might try:

✔ Simple body diagrams

✔ Pointing to body locations

✔ Visual pain scales

✔ Encouraging the person to point where discomfort is occurring

Someone with stronger Verbal–Linguistic abilities may respond better to:

✔ Shorter questions

✔ Additional processing time

✔ Simple choices

“Head?”

“Back?”

“Leg?”

Someone with stronger Bodily–Kinesthetic abilities may communicate pain in dementia through movement patterns.

Caregivers may notice:

✔ Guarding an area of the body

✔ Favoring one side

✔ Avoiding movement

✔ Protective positioning

For some individuals with stronger Interpersonal abilities, trusted caregivers who know the person well may recognize subtle changes much earlier.

These approaches do not replace medical care.

But they may help caregivers recognize pain in dementia sooner and seek help faster.

Understanding Where Pain Is Happening Matters

Another challenge caregivers commonly experience:

They know something hurts.

They just do not know where.

Someone experiencing hip pain may avoid walking.

Someone experiencing abdominal discomfort may refuse meals.

Someone experiencing dental pain may withdraw socially.

Pain in dementia can become especially difficult when caregivers recognize distress but cannot determine its source.

Understanding preserved abilities may help create better communication opportunities — helping individuals express not only that something is wrong, but potentially where support is needed.

Earlier recognition of pain in dementia may help caregivers respond sooner.

And sometimes earlier recognition can make a meaningful difference.

Dementia changes communication.

It does not always eliminate it.

Understanding preserved abilities may help caregivers move beyond guessing — and toward more effective support.

Learn more about strength-based dementia care at https://preservedabilities.com/