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

Press release published

Research published in the journal Age and Ageing has found that many people with dementia in hospitals are experiencing pain [1], with over a third of dementia patients (35%) with delirium being unable to communicate how they are feeling [2].  

The findings have come from an analysis of data by the Marie Curie Palliative Care Research Department, University College London, who investigated the link between pain and delirium in people with dementia. This isthe 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 frail older people. 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 an upsetting experience for the loved ones around them.

The scale of this issue is vast as around 40% of people in acute hospital wards have dementia [3] – many of whom are potentially living in pain yet are 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 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) [4], 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) [5].

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.”

To read the full report, please click here  

Notes to editor

About Marie Curie

Please note – we are now called ‘Marie Curie’ (not Marie Curie Cancer Care) 

Marie Curie – care and support through terminal illness 

Marie Curie is the UK’s leading charity for people with any terminal illness. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance. Marie Curie employs more than 2,700 nurses, doctors and other healthcare professionals, and with its nine hospices around the UK, is the largest provider of hospice beds outside the NHS. 

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The Marie Curie Palliative Care Research Department at UCL

An internationally recognised centre of research with a team of over 20 full-time researchers. The department receives core funding from Marie Curie and also undertakes research funded by the National Institute for Health Research (NIHR), the Alzheimer's Society and other research funders. The department has particular research strengths in the areas of palliative care for people with dementia, prognostication in advanced cancer and the management of cancer-related fatigue.

About the research

This study is part of The Impact of Acute Hospitalisation on People with Dementia: The Behaviour and Pain (BepAID) Study, jointly funded by the Alzheimer’s Society and BUPA foundation

The researchers recruited 230 participants aged ≥ 70 years from two UK acute hospitals. They were assessed for dementia severity, delirium ((Confusion Assessment Method (CAM) [3], pain at movement and rest (Pain Assessment in Advanced Dementia (PAINAD)) [4] , and analgesic prescriptions within three days of admission. The team followed each participant until discharge or death. The median length of admission was 12 days.

References and statistics

[1] 49% experienced pain at rest and 25% experienced pain during activity.

[2] Of the 35% of participants who were delirious and unable to self-report pain, 33% of these participants experienced pain at rest, and 56 experienced pain during activity. The odds of being delirious were 3.26 times higher in participants experiencing pain at rest (95% Confidence Interval 1.03 to 10.25, p = 0.044).

[3] Sampson, E.L., et al., Dementia in the acute hospital: prospective cohort study of prevalence and mortality. The British Journal of Psychiatry, 2009. 195(1): p. 61-66.

[4] Warden, V., A.C. Hurley, and L. Volicer, Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale. Journal of the American Medical Directors Association, 2003. 4(1): p. 9-15.

[5] Wei, L.A., et al., The Confusion Assessment Method: a systematic review of current usage. Journal of the American Geriatrics Society, 2008. 56(5): p. 823-830.