End of life care

7. Pain

People with dementia are at risk of pain from conditions such as arthritis, pressure ulcers (bed sores), urinary tract infections and constipation. It is sometimes assumed that people with dementia don't feel pain, but this is not true. Failure to recognise and adequately treat pain in people with advanced dementia is a significant cause of unnecessary distress.

As dementia progresses the person becomes less able to tell others that they are in pain. Staff and family carers need to understand this and look for other signs of pain (eg body language), so that it can be treated. Staff might sometimes also assume that challenging behaviours, such as shouting or agitation, are a symptom of the dementia, and not investigate them further. These behaviours may actually be a sign that the person is in pain and staff should give attention to understanding and acting on them.

Recognising when someone is in pain

Healthcare professionals should still ask the person if they are in pain. They can use pain assessment tools that may help to identify and rate pain in people with dementia. There are other things that may help when assessing whether the person is in pain: 

  • Knowledge of the person – There may be certain things that they typically do when they are in pain such as cry out or become very withdrawn.
  • Observation – Signs that someone is in pain include their behaviour (eg being agitated, irritable, tearful, or unable to sleep), facial expressions (eg grimacing), body language (if they are tense or rocking, or pulling at a particular part of their body) and vocalisations (eg shouting out, screaming and moaning).
  • Bodily changes – A high temperature, sweating or looking very pale can also indicate pain.

Doctors treating pain may start with paracetamol, which is a relatively weak pain-killer but often works well. If paracetamol fails then they will try stronger drugs, although these may have side effects (eg increased confusion) and should be carefully monitored. Doctors will also treat any underlying medical conditions that may be causing pain, such as constipation. 

Comfort-based approaches may also help relieve pain. These can include gentle exercise, massage and aromatherapy.