Recognising Pain in Someone with Advanced Dementia

Pain is one of the most undertreated conditions in people living with advanced dementia. Not because care teams do not care, but because the usual ways we communicate pain, telling someone, pointing to where it hurts, rating it out of ten, are no longer available to someone who has lost the ability to use language reliably.

What we see, again and again, is that the signs of pain in advanced dementia look like something else entirely. Agitation gets labelled as a behavioural symptom. Withdrawal gets put down to the progression of the illness. A change in sleep is assumed to be dementia-related rather than a sign that something physical is wrong.

The families and care teams who catch pain early are the ones who know what they are looking for and who trust what they observe, even when it does not fit neatly into a chart.

This article is our attempt to share what that looks like in practice.

Why Pain Is So Often Missed in Advanced Dementia

A person in the earlier stages of dementia can usually still tell you something is wrong, even if they cannot describe it precisely. In the later stages, that capacity reduces significantly. They may not be able to locate the pain, name it, or connect it to a cause.

What many families do not realise is that the nervous system still registers pain fully in advanced dementia. The experience of pain is not diminished by the condition. Only the ability to communicate it is.

This means that untreated pain in advanced dementia can persist for days or weeks without anyone knowing, showing up instead as distress, resistance, or a change in the person’s usual pattern that is easily attributed to something else.

“Something we come back to regularly with families is the idea that changed behaviour is always worth investigating. In our experience, when a resident who has been settled starts becoming harder to settle, pain is one of the first things we consider, not one of the last.”

The Lidder Care Team

What to Look For: The Physical Signs

The body communicates what words cannot. In someone with advanced dementia, the following physical signs can indicate pain.

Facial expression is often the most immediate indicator. Watch for a furrowed brow, tightened muscles around the eyes, a clenched jaw, or a grimace that appears during movement or personal care. These expressions may be brief and easy to miss if you are not specifically looking for them.

Guarding or protective posture is another signal. A person who holds one arm close to their body, who resists being moved in a particular direction, or who consistently shifts their weight away from one side may be doing so because movement in that direction causes pain.

Changes in breathing during movement or repositioning, particularly rapid shallow breathing or breath-holding, can indicate acute discomfort. This is something care teams often notice during personal care or transfers.

Vocalisation does not have to be clear speech to communicate pain. Moaning, groaning, crying out, or making sounds during movement or when touched in a particular area are all worth noting, especially if they are new or have increased in frequency.

Increased muscle tone or rigidity in a person who is usually more relaxed can suggest pain is causing the body to tense and brace.

What to Look For: The Behavioural Signs

Behavioural changes are where pain in dementia most commonly gets missed, because they are so easily explained by the dementia itself.

Families often tell us that a parent seemed to become more agitated, more resistant to care, or more withdrawn around the same time their physical health was changing, and that in hindsight the connection seems obvious. At the time, though, it was not.

Increased agitation or restlessness that does not settle with the usual approaches is worth investigating. When someone who is normally calm and able to be redirected becomes harder to reach, it is worth ruling out a physical cause.

Resistance during personal care is particularly significant. Many people with dementia find personal care challenging, but if resistance has increased notably, especially in specific areas of the body, this can indicate that touch or movement in that area is causing pain.

Withdrawal and reduced engagement. When someone who usually responds to familiar faces or activities becomes noticeably quieter and less present, pain can be a factor. This one is often missed because it can look like a general decline rather than a specific symptom.

Disrupted sleep is another sign that is easy to attribute to dementia when it may have a physical cause. Pain that is manageable during the day, when distraction is available, can become much harder to tolerate at night. If someone who has been sleeping reasonably is suddenly waking frequently or appearing distressed at night, pain is worth considering.

Reduced appetite or difficulty eating can sometimes be pain-related, particularly if there is dental pain, mouth discomfort, or pain on swallowing that the person cannot describe.

Tools That Help: The Abbey Pain Scale

In care settings, structured tools exist to help assess pain in people who cannot self-report. The most widely used in the UK is the Abbey Pain Scale, which was developed specifically for people with late-stage dementia.

It scores six observable indicators: vocalisation, facial expression, change in body language, behavioural change, physiological change, and physical changes such as skin conditions or arthritis. The score gives care teams a consistent language and a baseline to measure against over time.

The value of a tool like this is not just in what it identifies on any given day. It is in the pattern it reveals. A score that has been stable and then suddenly increases is a far more useful piece of information than a single observation in isolation.

If you are caring for someone at home and want to understand more about how pain is assessed, the Social Care Institute for Excellence (SCIE) has clear guidance on pain management in dementia that is written for families as well as professionals.

Common Sources of Undetected Pain

Knowing the likely sources of pain can help narrow down what to look for and prompt the right conversations with a GP or specialist.

Musculoskeletal pain is the most common. Arthritis, joint stiffness, and old injuries that the person could previously manage and describe may become much harder to identify when verbal communication is limited. People who are less mobile are also at higher risk of positional discomfort from sitting or lying in the same position for extended periods.

Dental pain is significantly underdiagnosed in people with advanced dementia, partly because routine dental care becomes harder to maintain and partly because the signs of toothache can look like general agitation. Regular dental checks, even simplified ones, matter.

Urinary tract infections cause pain and discomfort that can dramatically change how someone presents. UTIs are common in older people and in people with limited mobility, and they can escalate quickly. A sudden change in behaviour or presentation should always prompt consideration of a UTI alongside other causes.

Constipation is another physical cause that frequently presents as behavioural change in people with advanced dementia. Abdominal discomfort from constipation can cause significant distress that goes unidentified.

Skin pain from pressure areas, wounds, or conditions like eczema can be significant, particularly for people who spend a lot of time in bed or in a chair.

What Families Can Do

If you visit regularly, you are one of the most important sources of information about whether something has changed. Care teams rely on families to tell them when a person seems different to usual, even if neither of you can say exactly why.

Trust your instincts. Many families tell us they sensed something was wrong before any specific sign was obvious. That observation matters. Share it.

Keep a note of what you observe and when, including changes in facial expression, sleep, appetite, and how the person responds to touch or movement. Patterns across several days are more useful than a single observation.

Ask questions. If you are concerned that someone might be in pain, say so directly to the care team or GP. Ask whether a pain assessment has been done recently. Ask what the management plan is and when it will be reviewed.

Pain in advanced dementia is manageable. It is not an inevitable part of the condition that has to be accepted. When it is identified, it can be treated, and the difference that makes to someone’s quality of life can be significant.

How We Approach Pain at Lidder Care

At both Newgate Lodge and Lowmoor, pain assessment is a regular part of how we monitor residents’ wellbeing, not something triggered only when a concern is raised. We use structured tools to create a baseline for each resident so that changes are visible against what is normal for that person specifically.

We also know that the people who know residents best are often not in the building all day. Families notice things that shift slowly enough to miss in daily care. We actively want to hear from families when something feels different, and we take those observations seriously.

If you are thinking about care for someone with dementia and want to understand more about how we approach specialist dementia care at our homes in Mansfield and Kirkby-in-Ashfield, you can find out more about our dementia care or get in touch with the team directly.

You may also find these articles helpful:

• How dementia affects daily life
• Sundowning in dementia
• Dementia care homes for challenging behaviour
• Are dementia residents aware of their condition?

For general guidance on dementia care and support in Nottinghamshire, the Alzheimer’s Society and Dementia UK both offer excellent resources for families navigating this.