Pain in dementia: when the person does not say it hurts

The question “does anything hurt?” works with someone who can hear it, understand it and answer. In advanced dementia, none of those three steps is guaranteed. A person may be in pain and not say so, say no when the answer is yes, or show it in a way the team reads as something else.

This article is about that something else: the signs you can see, the scales that help read them, and the commonest mistake — calling pain “behaviour”.

Why pain goes unnoticed

In Portugal, pain has been treated as the fifth vital sign since the 2003 Directorate-General of Health (DGS) circular, which requires it to be assessed and recorded like the other signs. But the scales that circular proposes are self-report — the person says how much it hurts — and the circular itself says they apply to conscious, cooperative patients. For someone who can no longer answer, other methods are needed.

The result is well known. Alzheimer's Society in the UK has drawn attention to pain being frequently under-detected and under-treated in people with dementia, precisely because they cannot always communicate it. And pain does not go away because it is not spoken: arthritis, pressure ulcers, constipation, dental problems, urinary infections, recent falls — all of these exist in a population that spends a long time sitting or lying down.

The signs the team can see

Those who give care every day have an advantage over any scale: they know the person at their usual. The useful question is not “do they look in pain?” but “what has changed?”.

• Facial expression: frowning, eyes screwed shut, grimacing, a frightened or sad look that is not usual.
• Breathing: faster, noisy, laboured, frequent sighing.
• Sounds: moaning, complaining, calling out, calling repeatedly — especially on movement.
• Body: tense, clenched fists, knees drawn up, guarding a part of the body, pushing away the hand that touches.
• Agitation, or the opposite: restlessness, getting up and sitting down, fiddling with clothes; or withdrawal, keeping still, no longer joining in.
• Refusing care: resisting a wash, a pad change, getting up, repositioning. Often it is the movement that hurts.
• Routine: eating less, sleeping worse, more confusion than usual, changes in walking.

None of these signs proves pain. But any of them, if new, deserves the question.

PAINAD, and the Portuguese version

PAINAD (Pain Assessment in Advanced Dementia) was published in 2003 by Warden, Hurley and Volicer, for people with advanced dementia who cannot report pain. It is short: five items — breathing, negative vocalisation, facial expression, body language and consolability — each scored 0 to 2, for a total of 0 to 10.

There is a Portuguese version, with cultural adaptation and a study of its psychometric properties published by Batalha and colleagues in the Revista de Enfermagem Referência in 2012. The study was carried out with hospitalised older people, with and without dementia, and the authors conclude that the scale is valid and reliable in that setting, recommending it be used by professionals trained to apply it.

Three practical notes, which apply to any observational scale:

• Observe during movement, not only at rest. A lot of pain only appears on getting up, in the bath or when repositioning.
• Compare the person with themselves. A score is worth more as a series — before and after an intervention, from one day to the next — than as a single number.
• A score is not a diagnosis. The “mild, moderate, severe” bands often used with PAINAD are a convention borrowed from 0–10 scales, not validated cut-offs for this scale. A high score calls for clinical assessment; it does not replace it.

There are other observational scales, such as the Abbey Pain Scale. The choice belongs to the nursing and medical team; what matters is that it is the same one, applied the same way, and recorded.

The mistake of calling pain “behaviour”

“She's agitated”, “he's aggressive”, “refusing everything today”. These phrases appear in care notes, and often stop there — as if agitation were a trait of the person rather than a sign of something.

NICE, in its dementia guidance, recommends that when there are unexplained changes in behaviour or signs of distress, professionals assess whether the person is in pain, using an observational pain assessment tool if helpful — while still considering other causes. Hunger, thirst, cold, a full bladder, an infection, a noise, late afternoon: any of these can be behind it. We wrote about late-day agitation in sundowning.

The order matters. Thinking of pain first, and of other physical causes, and only then of “behaviour”, keeps a person in pain from simply being calmed down or distracted.

When to call the medical team

The care team does not diagnose, but it is the one that sees first. Call nursing or the doctor when:

• a sign of pain is new, appears suddenly, or gets worse from one day to the next;
• the scale score rises, or stays high over consecutive observations;
• there has been a fall, even with no visible wound, and the person no longer wants to bear weight on a leg or move an arm;
• the pain comes with fever, vomiting, difficulty breathing, blood, or much more confusion than usual;
• the person stops eating or drinking.

In a serious situation, or one that seems urgent, call 112. Outside the institution in Portugal, if in doubt, SNS 24 (808 24 24 24) helps decide what to do. Record what you saw, when and in what circumstances: that information is what lets whoever assesses decide better.

Where RVer fits, and where it does not

RVer does not assess pain and does not treat pain. It should not be used to work out whether someone is in pain, nor to “distract” a person whose pain has not yet been assessed.

Where it can fit is after that: as a calm, accompanied activity for someone whose situation has already been seen by the clinical team, with a professional alongside from start to finish. If there are signs of pain before the session, the session does not happen — call nursing. If they appear during it, stop. What the professional observes goes into the record and reaches whoever decides. For people who no longer communicate, we left some notes in the patient who no longer communicates; and on the place of virtual reality in pain more broadly, in pain management.

In summary

• In advanced dementia, the question “does it hurt?” stops getting through. The pain is still there.
• The signs are in the face, the breathing, the sounds, the body, the refusal of care and the routine. What counts is what has changed.
• PAINAD has five items, scored 0 to 10, and a Portuguese version studied in 2012. Observe during movement and compare the person with themselves.
• An unexplained change in behaviour calls, first, for the question of pain.
• New, sudden or serious signs go to the medical team; in an emergency, 112.
• RVer is not for assessing or treating pain; when it is used, it is as a calm, accompanied activity, stopped at the first sign.

This article is for information only and does not replace clinical assessment. Assessing and treating pain is the responsibility of the medical and nursing team; if you see signs of pain, talk to them.

RVer is a virtual reality system for clinical use designed for healthcare settings, whose base product is registered as a Class I Medical Device in EUDAMED (Basic UDI-DI 56006195127RVERTZ) and with INFARMED (Portugal, CDM 94571546) and bears the CE mark under MDR 2017/745. The RVer Motion, RVer Neuro and RVer Exposure modules are in development and are not covered by that registration.