When someone with dementia has delirium, they may well be in pain too

Assessing for delirium helps nurses spot and control patients’ unspoken pain

Assessing for delirium helps nurses spot and control patients’ unspoken pain

A patient’s delirium may present as agitation, but it can also be characterised by slowness to respond. Picture: Alamy

People with dementia who are in hospital should be checked much more frequently to see if they are in pain and possibly have delirium, say the researchers of the first study to explore the issue in depth.

‘We are recommending more regular assessments for pain and delirium to pick up on those who aren’t able to communicate this,’ says Alexandra Feast, one of the team of researchers at University College London’s Marie Curie Palliative Care Research Unit. ‘We know pain and delirium are manageable, but untreated they have a lot of adverse outcomes, including mortality, increased length of hospital stay and a higher likelihood of falls.’

Strong link between pain and delirium

Jointly funded by the Alzheimer’s Society and Bupa UK, the study focused on 230 people with dementia, aged 70 and over, at two acute hospitals in the UK. Researchers found almost half of the individuals developed pain at rest, with the odds of being delirious more than three times higher in these patients, suggesting pain is a risk factor.

‘As research hadn’t been done before in this area, we weren’t sure how strong the link between pain and delirium would be, but our studies show it’s significant and a very worthwhile finding,’ says Dr Feast. ‘If someone is identified as delirious, it’s likely there is underlying pain, whether they can communicate it or not. Healthcare professionals need to treat this potential level of pain, as the first step in alleviating a person’s discomfort.’

'It’s important nurses are on the lookout for signs of delirium, and are given the tools to improve communication with patients living with dementia’

Lotty Davies, research manager for Alzheimer’s Society

Raising awareness of issues to do with dementia is among the reasons the Alzheimer’s Society is committed to funding this kind of study, says the charity’s research manager, Lotty Davies. ‘We’re keen to make sure this research happens, so we can highlight issues that may not be recognised, such as difficulties in communicating,’ she says.  

Delirium, pain and dementia

  • Delirium is common, serious but usually treatable. It starts suddenly in someone who is unwell, and may be caused by infection, severe illness, surgery, pain, dehydration, constipation, poor nutrition or a change in medication 
  • Delirium is associated with increased risk of death or further hospital admission within 12 months
  • While 20% of older people in hospital have delirium, the figure is much higher for those with dementia, according to the Alzheimer’s Society
  • Delirium is under-diagnosed and up to three quarters of cases are undetected in acute hospitals
  • Pain and delirium are not routinely assessed in people with dementia, the 2017 UK National Audit of Dementia Care in General Hospitals found


Nurses are a target audience. ‘They have a lot of first-hand contact with people who have dementia, so we need to provide this kind of information to improve their understanding of what their patients may be experiencing and how they support them,’ says Ms Davies. ‘It’s important nurses are on the lookout for signs that could indicate delirium, and are given the tools to improve communication with patients who are living with dementia.’

Other studies being supported by the charity include one involving a large group of people with dementia to see if those who have delirium – whether in hospital or at home – are more likely to suffer cognitive impairment. It is expected to conclude at the end of 2019, while another project is just beginning. Running until 2021 and involving nurses, doctors and psychologists, the study will explore how to support people with dementia to recover better from delirium. Alongside helping people recuperate physically, the study intends to find ways to help prevent loss of memory and thinking skills in those who have experienced delirium.

The compounding effect of dementia

The consequences of delirium can be particularly severe for those who also have dementia. ‘We’ve heard of people going into hospital for something relatively minor and ending up having an extended stay because of delirium,’ says Ms Davies. ‘It can have lasting negative effects on the person, even after it’s been treated.’

‘Recognising pain is key – and it won’t always be as simple as someone saying “my knee hurts”. We have to work it out and that’s hard to do

Vicki Leah, chair of RCN older people's forum

These effects may include distressing memories, sometimes linked to fear and anxiety, that can continue for several months. There can also be a rapid worsening of function and ability, for example, someone may be admitted to a ward able to dress themselves, but no longer able to once discharged, with the degeneration sometimes being permanent. Following delirium, the individual is also at higher risk of dying within a year.

‘What we’re trying to do now is put pain right at the top of the list, when we’re assessing patients,’ says Vicki Leah, who retired from her post as consultant nurse for older people at University College London Hospitals NHS Foundation Trust in September, but continues to chair the RCN older people’s forum.

‘When someone’s behaviour changes and they have dementia, it’s easy to think it’s connected to that diagnosis. But it may be the result of a painful condition such as arthritis, a pressure ulcer or UTI’

Vicki Leah, RCN older people's forum

‘Something happens when people see a report and it really raises their awareness of it as an issue,’ says Ms Leah. ‘When healthcare professionals recognise that someone is in pain, they treat it and take it very seriously. But it’s understanding how to recognise it that is key – and it won’t always be as simple as someone saying “my knee hurts”. We have to work it out and that’s hard to do.’ 

Diagnostic overshadowing

When caring for those with dementia, Ms Leah warns against diagnostic over-shadowing – when any changes in symptoms or behaviour are wrongly attributed to dementia, leaving other conditions undiagnosed. 

What do I need to look for?

  • Arousal When you’re carrying out nursing tasks, such as helping someone to wash, dress and eat, or doing a drugs round, check to see if a patient’s level of arousal is normal, advises Vicki Leah of the RCN older people’s forum. ‘Do they understand what’s happening, to the level you would expect,’ she says. ‘Constantly assess throughout your shift’
  • Escalation Every team should have an escalation plan in place, says Dawne Garrett, RCN professional lead for older people and dementia care. ‘All staff should know what to do if they identify someone who they think may have delirium,’ she says
  • Lethargy Be aware that patients with delirium may not necessarily be agitated and restless, but may have the hypoactive type, characterised by lethargy and abnormal drowsiness. ‘The outcomes for this kind of delirium are worse,’ says Ms Leah. ‘If you’re on a ward and you’re seeing a cold cup of tea and lunch is being served but the person is still under the covers, it should raise alarm bells’
  • Evidence base Use evidence-based tools to assess pain for people living with dementia, advises Ms Leah


‘When someone’s behaviour changes and you know they have dementia, it’s easy to think it’s connected to that diagnosis,’ says Ms Leah. ‘But it may be the result of a painful condition such as arthritis, a pressure ulcer, a urinary tract infection, or a consequence of a procedure or surgery. You need to find the reason for the pain and treat the person with analgesics.’

Vicki Leah

Patients with dementia may also find it particularly difficult to explain where pain might be happening or how bad it feels. ‘Some will be able to do that but as the disease progresses it becomes more and more difficult,’ says Ms Leah. ‘And if they are in pain when they move, but you ask them when they’re sitting down, they may have forgotten that when they walk it hurts, so they’ll say they’re fine.’

It’s not always about agitation

It is also important to understand that delirium may not always be of the hyperactive kind, says Ms Leah. ‘The person may not be shouting and pushing people away. They may get a hypoactive delirium, which makes them very sleepy. We’re not good at recognising it,’ she says. While hyperactive delirium is characterised by restlessness and agitation, those with the hypoactive type may be lethargic, drowsy and inactive, responding slowly to questions, with no eye contact and little spontaneous movement.

‘If you deal with delirium promptly, the outcomes are so much better’

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

Around a year ago, Ms Leah helped to spearhead a new RCN initiative to create delirium champions, which is targeted at those who work in the community, such as district and practice nurses and care home staff. ‘The idea was to encourage staff to think about whether someone had changed – and not just think: they have dementia, so that’s why they’re confused,’ explains Ms Leah. 

Fast escalation of concerns

Those who signed up have been provided with a range of tools to help educate their colleagues about identifying the early signs of delirium, with the emphasis on escalating concerns quickly to prevent harm. ‘It has raised awareness not just for nursing staff, but also for the general public,’ says Dawne Garrett, the RCN’s professional lead for older people and dementia care.

Dawne Garrett

‘If you deal with delirium promptly, the outcomes are so much better. But when you’re seeing patients who have complex co-morbidities, and fluctuating capacity, it can be very hard to diagnose. Nursing staff are key in picking it up because they’re much more likely to spot changes in someone.’

For Ms Leah, the delirium champions initiative has been a great success, changing the conversation. ‘Now people are talking about patients being delirious rather than confused,’ she says. ‘Confusion isn’t a diagnosis, whereas delirium means you have an acute medical emergency that can be treated – staff have to act.’   

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Lynne Pearce is a freelance health journalist

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