How to recognise pain in dementia
People with advanced dementia often can no longer name or locate pain. They show it in other ways. Look especially for changes compared with their usual behaviour:
- Face: frowning, eyes squeezed shut, distorted mouth, frightened look
- Sounds: moaning, sighing, groaning, calling out, especially when moving or being touched
- Body: guarding, tension, rubbing or holding one spot, flinching
- Behaviour: withdrawal, restlessness, wandering, resisting care or aggression during care
- Daily life: sleeping worse, eating and drinking less, not wanting to get up
- Mind: suddenly more confused or agitated than usual
Each sign can have other causes, such as fear, hunger, needing the toilet or an unfamiliar place. Where possible, ask first anyway: many people with mild or moderate dementia can still answer "Does it hurt right now?". Observation adds to what they tell you; it does not replace it.
How to observe
- Choose a situation and note it: at rest (sitting, lying) or during movement (getting up, washing, transferring, walking).
- Watch for two minutes without doing anything else. During a transfer, a second person who only observes helps.
- For each area, pick the strongest behaviour you saw. Each area counts for no more than 2 points.
- Observe in the same situations whenever possible, for example during morning care and in the armchair in the evening. Only then can you compare the scores.
- Measure at rest and during movement. A higher score during movement points to movement-related pain.
- Repeat the observation after an intervention, for example an hour after an as-needed painkiller. If the score goes down, that is important information for the doctor.
What the points mean
There is no reliable cut-off for pain yet. The working group on pain in older people of the German Pain Society recommends this interpretation:
| 0 points | No pain behaviour visible. Pain is not ruled out. |
|---|---|
| 1 point | More attention to possible causes and further signs. |
| 2 points or more | Pain likely. One study (Lukas 2013) placed the cut-off at 4 points. |
The total is not a pain intensity like the 0 to 10 scale, and it says nothing about how much one person suffers compared with another. What matters is the trend in the same person: if the score rises, is higher during movement than at rest, or drops after pain treatment, that points to pain.
What to record for the doctor and care team
The GP usually sees the person for a few minutes; you see them over days. That is why your observation counts. For each reading, note date, time, situation and total, and add what you notice: which spot is being protected, whether the person is eating less, what you did and how things looked an hour later.
At the start, describe in two or three sentences how the person behaves on a good day. The doctor reads every later observation against that description. Take the printed history of the last two to four weeks and the medication list to the appointment.
Background: PAINAD and its German version
The PAINAD (Pain Assessment in Advanced Dementia) was developed in the USA in 2003 by Victoria Warden, Ann Hurley and Ladislav Volicer for people with advanced dementia. It rates breathing, negative vocalisation, facial expression, body language and consolability with 0 to 2 points each. A German version called BESD was translated and tested in care homes by Matthias Schuler and colleagues and is published by the German Pain Society.
The form on this page uses the five areas and the scoring. The descriptions are our own wording of the meaning, not the official text of any published version. The original publication and further sources are listed below.
Ask the home care service or care home which tool they use. If you use the same one, you are talking about the same areas and scores.
Can family carers use the form?
The German version was tested with trained nurses. According to the German Pain Society, results from relatives and people without training are noticeably less accurate. Even so, it matters that everyone who supports the person shares what they observe. So use the form as a memory aid and a basis for conversation, not as a diagnosis, and discuss noticeable scores with the care team or GP.
Frequently asked questions
What is the PAINAD scale?
PAINAD stands for Pain Assessment in Advanced Dementia. Carers observe breathing, vocalisation, face, body language and response to comfort for two minutes and give 0 to 2 points for each, making a total of 0 to 10.
From what score does someone have pain?
There is no reliable cut-off. The German Pain Society recommends assuming likely pain from 2 points. Even 0 points does not rule pain out.
How often should I observe?
Ideally regularly in the same situations, for example once at rest and once during care, and also after any pain treatment. The trend says more than a single score.
Is this the official PAINAD form?
The areas and scoring follow the PAINAD, but the descriptions are our own wording. For formal use in care settings, use the form your organisation provides.
Where are my readings stored?
Only in the browser on your device. There is no account and nothing is sent to a server. For the GP, print the history or save it as a PDF.
Read more
Sources
- Warden V, Hurley AC, Volicer L (2003): Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. J Am Med Dir Assoc 4(1): 9-15
- Schuler MS et al. (2007): Psychometric properties of the German "Pain Assessment in Advanced Dementia Scale" (PAINAD-G) in nursing home residents. J Am Med Dir Assoc 8(6): 388-395
- Basler HD et al. (2006): Assessment of pain in advanced dementia. Construct validity of the German PAINAD. Schmerz 20(6): 519-526
- Zwakhalen SM, van der Steen JT, Najim MD (2012): Which score most likely represents pain on the observational PAINAD pain scale for patients with dementia? J Am Med Dir Assoc 13(4): 384-389
- Lukas A, Barber JB, Johnson P, Gibson SJ (2013): Observer-rated pain assessment instruments improve both the detection of pain and the evaluation of pain intensity in people with dementia. Eur J Pain 17(10): 1558-1568
- German Pain Society: BESD observation form, December 2008 version (PDF, in German)
- German Pain Society, working group on pain in older people: guidance on using the BESD, 2013 (PDF, in German)
- Alzheimer Scotland: Pain in dementia (information sheet)
PAINAD: Warden, Hurley, Volicer 2003. German version BESD: © 2007 Matthias Schuler, German Pain Society; the original form is free for non-commercial use. The texts in the form above are our own descriptions of the meaning.
For family carers: in the PainTrack app you create a separate pain for the person you look after, such as "Mum: pain signs", enter the total on the 0 to 10 scale and the observation in the note. One active pain definition is free. For more people and the PDF doctor report for the GP or care home you need PainTrack Pro.
This observation form is a guide and not a medical device. It does not replace a medical examination, diagnosis or treatment.