How to tell if someone is in pain if they can no longer say so?

My mother barely speaks anymore and lately she's been more agitated, making faces and groaning. Could she be in pain and unable to tell me? I'm afraid I'm letting her suffer without knowing.

That concern shows how attentive you are to her. Uncommunicated pain is one of the biggest worries for carers, and you are absolutely right to want to understand what those groans mean.

Why it happens

As dementia progresses, the person loses the ability to say "it hurts here". The pain doesn't disappear: it starts to manifest through behaviour and the body. Often, agitation, aggression, or refusal to be touched are, in fact, pain.

Practical strategies

• Observe their face: grimaces, furrowed brow, squinted eyes.
• Notice sounds: groans, sighs, crying, shouting.
• Note their body: tension, protecting an area, refusal to move.
• Pay attention to changes in behaviour, sleep, or appetite, and resistance during hygiene.
• Check for common causes: wounds, constipation, urinary tract infection, problems with the mouth or feet.
• Note when and in what situations discomfort arises.

What NOT to do

• Do not always interpret agitation as "a tantrum" or "stubbornness".
• Do not administer painkillers on your own without guidance.
• Do not force movements in an area that causes them pain.

When to seek professional help

Share your observations with your GP, who can assess the cause and adjust pain treatment. In case of urgent doubt, call NHS 111.

"I thought she was just agitated. It was a sore in her mouth. Once the pain was treated, she was my calm mother again." — Anonymous Carer