How to recognise and treat pain in someone with dementia

When nurses ‘think pain’ and take appropriate action, it can transform patients’ lives

When nurses ‘think pain’ and take appropriate action, it can transform patients’ lives

Picture: iStock

In 2018 Julie Willoughby came up with the idea for a campaign to help raise awareness of pain in people with dementia. But the seeds of the campaign were sown many years ago, when a shocking incident on an acute hospital ward made her appreciate the lack of awareness of the issue in general healthcare settings.

‘I remember being called to see a man because he was “distressing” staff and other patients,’ she says. ‘When I arrived on the ward I was told they’d had to move him to a side room. When I went in, he was literally writhing on the bed, and was emaciated – he looked near the end of life. He had shingles and was on no pain relief. He had been chewing his hands and had literally bitten the end off.

‘Staff sometimes think that people are behaving the way they are because of their dementia, not because they are trying to communicate that they are in pain’

Julie Willoughby, consultant nurse in dementia

‘Once I’d scraped myself off the ceiling and asked why he wasn’t getting palliative care, I was told he was “a dementia”. It was as if suddenly he was a non-person. That man needed more than pain relief; he needed dignified end of life care, and after that, he got it. But that was the start of it for me – the start of the crusade, if you like.’

Common misconceptions

OUCH – which stands for Observe, Understand, Communicate, and Help – was launched in May last year (during Dementia Awareness Week) at The Royal Wolverhampton NHS Trust, where Ms Willoughby is a consultant nurse in dementia. The campaign aims to improve clinical practice by addressing common misconceptions about the behaviour of patients with dementia.

Watch: Understanding Pain in Dementia - OUCH Campaign


Most of all, its aim is to encourage staff to ‘think pain’ and take appropriate action rather than assuming a patient’s actions – such as distress or aggression – are necessarily due to their dementia.

‘We know that pain in people with dementia is often not recognised, which means it isn’t treated, causing patients distress,’ says Ms Willoughby, who has more than 30 years’ experience of nursing people with dementia.

 ‘Staff sometimes think that people are behaving the way they are because of their dementia, not because they are trying to communicate that they are in pain. This campaign is a simple way of trying to raise awareness to ensure that these patients get the help they need.’

The OUCH campaign has been well received at The Royal Wolverhampton
NHS Trust, says Ms Willoughby (back left).

In the UK, there are around 850,000 people living with dementia. This is expected to rise to one million by 2025 and to two million by 2051, according to charity the Alzheimer’s Society.

Like everyone else, these people will come into contact with healthcare services in different settings, ranging from their GP practice and community services through to general and specialist hospitals. Due to their age – the vast majority of people with dementia are over 65 – most will have co-morbidities, sometimes multiple. Many of them will also be in pain.

Helpful guidance and tools

This is recognised in national guidance – for example, the National Institute for Health and Care Excellence (NICE) guideline on dementia, published last year, makes several recommendations on managing pain (starting at section 1.8.3). These include using a structured observational pain assessment tool, alongside standards for clinical assessment and self-reported pain for those able to do so.

Also published last year, guidance on recognising and assessing pain in older adults, developed by the British Geriatrics Society and the RCN in collaboaration with others, has more specific recommendations, including suggestions about helpful tools. These include the Pain in Advanced Dementia (PAINAD) scale and Doloplus 2.

According to Dementia UK consultant nurse Sharron Tolman, there is widespread evidence that people with dementia are more likely to experience untreated pain, compared with patients who do not have dementia.

In a hospital, for example, a patient with dementia who has had surgery might not receive any pain relief, while someone in the next bed, who has had the same operation, will have their pain managed well. ‘It’s diagnostic overshadowing – the dementia gets blamed,’ she says. ‘If someone seems distressed, then it might immediately be assumed it’s because of dementia, not because of pain – the assumptions are still made.’

Pain in dementia: what to consider

  • There are many signs that someone with dementia might be experiencing pain. These include: fidgeting, restlessness, ‘bracing’ the body, distress, calling out, problems with sleeping, social withdrawal, aggression, holding parts of the body, crying, tension
  • Dementia UK consultant nurse Sharron Tolman suggests taking a stepped approach to identify pain in people with dementia: begin with a holistic assessment, involving family members, and include observation and use of a pain management tool where appropriate
  • Family members can report on changes of behaviour and also a person’s history with pain – for example, have they always been a ‘stoical’ sort who didn’t like to complain? Regular monitoring and assessment is necessary. Even if someone does not seem to be in pain one day, they might be the next. Family and other carers, for example staff in a care home, are key to this
  • Ms Tolman recommends developing an analgesic plan, ‘starting small’, for example with paracetamol, and seeing if it makes a difference. She warns that it is important to ensure that medication is taken regularly – a patient prescribed a drug ‘as required’ might not get the full benefit if it is not taken with optimal frequency
  • Consider non-pharmaceutical interventions, such as heat pads, massage and better positioning
  • Be aware that people with dementia may have other conditions that cause symptoms, including pain, but that staff should not assume that symptoms are due to dementia
  • Ms Tolman recommends regularly assessing pain to ensure that it remains controlled
  • NICE advises using ‘a stepwise treatment protocol that balances pain management and potential adverse effects’ and repeating pain assessments for people living with dementia who seem to be in pain, who show signs of behavioural changes that may be caused by pain, and after any pain management intervention


‘Dig a little deeper’

There are, of course, challenges in assessing whether someone is in pain, particularly if they cannot express themselves verbally. Even if they can communicate, people with dementia might deny they are in pain or refuse the offer of treatment says Ms Tolman.

Sharron Tolman: ‘There is still a lot
of sub-optimal pain management.’

‘There are lots of things around whether people have the ability to verbally communicate how they are feeling, or where the pain is located. They might say no [to pain relief] when that isn’t actually what they mean. Rather than accept that, you might have to dig a little deeper.’

Ms Tolman was an Admiral Nurse for many years and now trains other Admiral Nurses to work with people with dementia and their families. As such, she has a good overview of pain management practices in dementia care across health and care settings. ‘There is still a lot of sub-optimal pain management in dementia care,’ she says. ‘And it can have a real impact on families and carers too.’

She co-authored an article published last year in Nursing Standard’s sister journal Nursing Older People, which outlined a case study of pain management in a person with dementia and involved working closely with a family carer.

The patient, called Miriam, had ‘behavioural’ problems that the district nurse had attributed to her dementia. These ‘behaviours’ included restlessness, wringing of hands and being unable to sit for any length of time, as well as being tense, unhappy and irritable. Her husband, George, reported that she wasn’t sleeping well and had a poor appetite. He also thought this was down to her dementia, but was supported to use a pain assessment tool to determine when she needed help. The outcome was good for both George and Miriam, helping them to cope better at home.

Insight into the patient’s ‘normal’?

RCN professional lead for older people and dementia care Dawne Garrett agrees that it’s vital to involve family and other carers when determining whether someone with dementia is in pain.

She says that while the ability to assess and respond to pain is core to nursing, there is still a way to go in ensuring that all nurses are equipped to do this for patients and service users with cognitive impairment, including dementia.

‘It’s a huge issue,’ she says. ‘There are specific pain management scales, which can be helpful, but it’s also important to understand what is the patient’s “normal” – what is their usual expression, for example. That’s why getting the involvement of family members or those who care for the person all the time is so important.

‘I think that nurses know this, but sometimes it’s hard to differentiate between what is pain, and the type of pain – for example is it constipation, position or a heart attack, particularly in patients who find it hard to express the quality of their pain. Some people with dementia are able to tell you perfectly well what the pain is and what it’s like, but others can’t.’

Once pain has been assessed, it’s crucial not just to start the right treatment, but to prepare the patient. ‘If someone doesn’t understand that you are about to give them an injection or oral medication that can make things worse,’ she adds.

When patients can’t verbalise pain

Dr Garrett acknowledges that it’s harder to ascertain pain in patients with later dementia, particularly those who are non-verbal. Sometimes the cause can seem obvious – for example, if someone has had surgery you would expect there to be postoperative pain.

Nurses need to develop the skills to look for physical signs of pain, particularly when patients can’t tell them how they are feeling. ‘It’s about taking note of physical signs, such as their pulse, noticing if they are grimacing, or if they are holding their body. What we need to understand is where it’s coming from and what’s the best treatment.’

This does not have to mean medication, she stresses. There are a wide range of non-pharmacological interventions, including changing someone’s position, applying heat or cold, an using touch or distraction. ‘Obviously that’s not going to work if someone’s having a heart attack, but we do know that reducing someone’s mental and psychological distress can make them feel better. Topical pain relief [such as gels] can also be good, particularly for things like pain caused by arthritis.’

‘The impact can be absolutely phenomenal – once you release them from pain it’s like caring for a different individual’

Dawne Garrett, RCN professional lead for older people and dementia care

Dr Garrett believes that learning how to assess pain in people with dementia is of enormous value to all nurses, whatever the setting. ‘Exquisite pain assessment skills can be transferred to any age group or condition,’ she says.

‘If you are good at doing it for people with dementia, then you can use what you have learned in a huge range of patients, from people with drug and alcohol problems, to those who are coming round from anaesthetic and people with learning disabilities, for example. It’s one of the most important things that we as nurses can learn to do.’

Getting pain relief right is also hugely rewarding for nurses, adds Dr Garrett. ‘The classic case is someone with challenging behaviour, who is perhaps aggressive, and it transpires that they are in pain. The impact can be absolutely phenomenal – once you release them from pain it’s like caring for a different individual.’

The OUCH message

Ms Willoughby is delighted at how the OUCH campaign has been received in Wolverhampton – especially as she wasn’t very confident about it at the start. ‘I shared the idea with a few people and spoke to the head of the nurse education department and everyone was very encouraging,’ she says. ‘We decided to make it trust-wide because this is something that touches everyone, no matter what department they work in.’

The campaign itself has involved a combination of social media, a video, and even mugs and pens with the OUCH logo. While its subject matter should not be new to staff – Ms Willoughby has been including it in training courses she has been running for the past eight years – she hopes that the high profile of the campaign is helping to embed the message.

‘It’s been received very well. I’ve been amazed at the response, and we’ve had lots of positive comments from staff. We’ve also had some interest from other trusts and it would be great to see it spread further.’

Jennifer Trueland is a health journalist

Find out more

This article is for subscribers only