Detecting pain is more important than ever when someone has dementia

Jo James, Dementia Lead at Imperial College Healthcare Trust and a keen supporter of John's Campaign, knows from first hand experience with her own mother that hospital staff's detection of pain in patients who have dementia is not always as good as it should be. 

Speaking to the Guardian, she stresses the need for both carers and hospital staff ​to be more vigilant in looking for signs of pain so that dementia patients aren't left to suffer.

My mother had advanced dementia when she sustained facial injuries after a fall. I rushed to the emergency department to see her but walked straight past the cubicle she was in: I did not recognise the person lying on the trolley. The nurses were kind. One put her arm around me and gently explained the extent of the damage: 60 stitches to her face, a broken cheekbone and nose and the loss of most of her front teeth. Meanwhile, my mother fidgeted on the trolley beside us, and I interrupted the conversation to ask what she had been given for pain. The nurse smiled and said: “Don’t worry. She won’t be in any pain.” I realised that she had not been given anything at all.

The clinicians looking after my mother were not being unkind; they simply had not thought about pain and she could not tell them. Research shows that people with dementia receive significantly less pain relief than others when they are in hospital.

One reason for this is that a person with dementia is likely to express pain as a change in mood or behaviour which can be different every time, making it hard to recognise. At Imperial, we use a tool designed to identify pain in dementia that looks at a range of different factors, from the expression on a person’s face to the sound that person is making. Had this been in use when my mother was injured, she would not have been left to suffer for hours.

The thought of someone being in terrible pain with no hope of respite from it is hard to imagine, and combined with all the other challenges facing a person with dementia, it also seems tremendously unfair. However, the solution is simple and requires no specialist knowledge or training. Simply being aware of the possibility of pain and flagging it up so that the person can be given some relief is all that is required and is something that we can all do.

Jo James 
Dementia Lead, Imperial College Healthcare Trust                 
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  • 1 October 2015