Dementia patients with delirium suffer in silence with over a third unable to verbalise pain

30 August 2018

Research published in the journal Age and Ageing has found that many people with dementia in hospitals are experiencing pain, with over a third of dementia patients (35%) with delirium being unable to communicate how they are feeling.  

The findings have come from an analysis of data by the Marie Curie Palliative Care Research Department, University College London, which investigated the link between pain and delirium in people with dementia. This is the first study of this kind in a hospital setting, and suggests that pain may be a key cause of delirium for people with dementia. 

Delirium is a state of acute confusion. It is a common and potentially serious medical condition that can particularly affect older people with frailty. It can be caused by infections, sensory deprivation or even simply a move to an unfamiliar environment such as a hospital. Patients may be scared and very distressed, and this can be deeply traumatic for the patient and upsetting for the loved ones around them. 

The scale of this issue is vast as around 40% of people in acute hospital wards have dementia – many of whom may be living in pain yet unable to ask for help.

The study concludes that if hospital staff can identify patients who are experiencing delirium this could indicate that the person might be in pain, and regular assessments could help effectively manage their pain and delirium. 

Dr Liz Sampson, Reader, Marie Curie Palliative Care Research Department, University College London said: 

“In the UK, almost half of people admitted to hospital over the age of 70 will have dementia. We know that they are a high-risk group for delirium and yet delirium is often under treated. Our latest work suggests that pain could be a cause of delirium. It’s deeply troubling to think that this vulnerable group of patients are suffering in silence, unable to tell healthcare professionals that they are in pain.”
“Studies like this may help hospital staff provide better care now and in the future as dementia diagnosis rates continue to rise.”

The study, jointly funded by Alzheimer’s Society and the Bupa Foundation, and supported by the terminal illness charity Marie Curie, was conducted in two acute hospitals in the UK and followed 230 patients over 70 years old. Researchers first asked patients if they were in pain, which is considered to be the ‘Gold Standard’ for pain reporting. If the patient was then unable to communicate, researchers used the ‘Pain Assessment in Advanced Dementia Scale’ (PAINAD), as it observes people for signs of pain in their facial expression and body language. They recorded the number of people who were unable to communicate that they were in pain, and measured delirium with the Confusion Assessment Method (CAM). 

Dr Doug Brown, Chief Policy and Research Officer at Alzheimer’s Society, said: 

“Dementia is a devastating condition, with someone in the UK developing it every three minutes. We know that people living with dementia can find it difficult to communicate, and when this concerns inability to communicate pain to hospital staff, it’s clearly extremely concerning, as it’s not only upsetting and frustrating but can have serious consequences on a person’s health. The link this research shows between delirium and pain shows that the problem may be worse than previously realised.  

 “We funded this study, supported by Marie Curie, as we want to ensure dementia care is the best that it can be – at home, in care homes, and in hospitals. We now need to take steps to ensure that all healthcare professionals have the right training to identify such distress in order to properly care for people with dementia.”