Study shows better communication needed to improve pain management for people with dementia

by Dr Liz Sampson
Senior Clinical Lecturer

Liz Sampson, Senior Clinical Lecturer

A new study published yesterday by the Marie Curie Palliative Care Research Department at University College London investigates the link between pain and behavioural symptoms in people with dementia in hospitals. Funded by Alzheimer’s Society and the BUPA Foundation, this is the first study of its kind to be done in a general hospital.

People living with dementia often have difficulty expressing themselves, which can be very problematic when it comes to detecting and treating pain. Moreover, hospitals can be very challenging places for people with dementia; the unfamiliar surroundings can potentially cause them distress and confusion.

What the research tells us

Over the course of 12 months, researchers studied 230 people with dementia aged over 70. The research was conducted in 20 different wards, within two large hospitals, to give a varied picture of the experience of people with dementia.

The people who took part in the study were assessed when they were first admitted to hospital and then again every four days. They were asked about their pain using yes/no questions and the FACES scale, a tool to help people communicate their pain with a series of drawings of facial expressions. The researchers also observed people to assess whether they were in pain or agitated, or displaying challenging behaviours.

They found pain was common in people with dementia who were admitted to hospital – 27% were in pain when they were first admitted, and this increased to 39% who were in pain on at least one occasion during the time that they were in hospital. When patients were observed, 19% had pain at rest and 57% had pain while moving at least once when they were in hospital. Pain was closely associated with aggression and anxiety.

The findings suggest that improved pain management for people with dementia may reduce challenging behaviours and improve the quality of hospital care they receive. But with staff in hospitals already stretched in terms of time and resource, there is a need to raise awareness that a change in behaviour for someone with dementia might indicate they are in pain but are unable to express this.

Pain management and communication

This research follows the Living and dying with dementia report recently published by Marie Curie and Alzheimer’s Society. The report identifies the barriers that prevent people with dementia from accessing high-quality palliative and end of life care, including the issue of pain management for people with dementia. It also echoes the results of the Palliative and end of life Priority Setting Partnership, which identified communication with people with dementia as one of the top 10 priorities for research.

Read the final report from the Priority Setting Partnership which includes more detail on the top 10 priorites for palliative and end of life care research.