Pain is an individual experience that different people feel in different ways. People with dementia are less likely to report that they are having pain. But we know that dementia affects as many as 80% of older adults in care homes, where conditions like pressure sores from prolonged sitting or lying down, urinary tract infection, tooth decay and undiagnosed fractures can be common.


Challenges in recognising pain in dementia


These conditions cause pain and distress but people with dementia may not be able to tell carers and healthcare professionals as the illness can affect people’s understanding and their speech and communication.

Professor Pat Schofield, a researcher in pain, ageing and dementia, says there needs to be more awareness of the problem in older people with dementia - as there are good treatments available that can help.


Importance of public awareness


“Public awareness is very powerful. It can be so stressful, traumatic and emotive looking after someone with dementia for carers that they can’t often see the pain. If we raise the awareness of the signs and symptoms of pain in dementia, people might start to see these signs and say ‘Oh yes, it could be pain’."

There may be physical signs of pain such as sores or wounded skin, deformities in the joints and bones caused by arthritis or fractures, or changes in body language as people protect or guard a painful area. But sometimes people with dementia who are in pain only exhibit very subtle changes in behaviour or mood that may only be noticeable to their carers. The challenge is to recognise these behaviour changes, because they’re similar to those that are caused by dementia, Professor Schofield explains.

Pain isn’t always a priority but we are improving - slowly

“People with dementia exhibit a variety in behaviour, things like agitation, aggressiveness, withdrawal, depression, and mood changes. These things are linked to the dementia itself, but we know from the literature that these variations in behaviour can also be caused by pain.”


Good treatments are available for pain


Along with raising public awareness, Professor Schofield says using practical tools to encourage healthcare professionals to prescribe the right treatments, including painkillers such as paracetamol, anti-inflammatory drugs and stronger opioid drugs, will help improve the management of pain in dementia. Her research group at the University of Greenwich is working on an iPhone app to help healthcare professionals to assess pain in adults with dementia.

“Healthcare professionals have been generally very poor in dealing with pain in older adults. They are probably getting a little bit better now. Pain isn’t always a priority but we are improving - slowly.

“Getting the right balance in terms of pain relief but avoiding side effects is tricky. There’s a lot of anxiety about prescribing painkillers, especially opioids, because of the risk of unpleasant side effects like constipation, sedation and confusion which can worsen dementia symptoms. That’s where we need to educate healthcare professionals.”