39% People with Dementia are Unable to Express their Pain ─ Discover the Signs

A study carried out by University College London (UCL) and published in the journal PAIN Today, suggests that the frequency of pain experienced by people with dementia whilst in hospital may be much greater than previously thought. The study showed that whilst 57% of people with dementia were observed to have pain, due to the nature of their condition, fewer than 39% were able to report this to staff. The study also found a direct relationship between increased pain levels, aggression, anxiety and agitation, suggesting that poor pain management may be a trigger for behaviour that challenges which may, in turn, lead to difficulties in receiving effective treatment whilst in hospital.

Although the study was carried out exclusively in hospital settings, its findings are useful to staff working with people living with dementia, in care home or community settings where unreported and untreated pain can have equally distressing effects on the quality of life. Read on to learn more about the practical steps you can take to identify pain in people living with dementia and how your observational skills can improve the comfort of your service users.

As this UCL study shows, a decline in the ability to communicate as a result of dementia can mean that service users are unable to report pain in the way they may previously have done. Rather than telling staff directly of pain or discomfort, non-verbal communication or changes in behaviour may become more significant signs of pain. Learning how to interpret these cues is an important skill in continuing to provide pain-free and dignified care, as verbal communication skills diminish.

5 Key Pain Indicators from a Person Living With Dementia:

  1. Behavioural changes. Restlessness, fidgeting, pacing and agitation may all indicate pain and require further investigation. Showing signs of anxiety, or pushing away staff as physical care is about to be given may also suggest that pain is being experienced, particularly if the care involves changing position.
  2. Mood changes. Depression, withdrawal or a change in response to familiar faces or voices, are often linked to the experience of pain. If there is no obvious reason for a change in mood, always consider whether pain could be a factor.
  3. Facial expression/body language. Frowning, grimacing or any facial expression indicating distress may suggest the presence of pain. Equally, a change in posture or visible rubbing or holding of a part of the body can suggest discomfort in the affected area.
  4. Speech. If the person’s ability to communicate is severely limited, moaning, shouting or repetitive calling out may be their only way of communicating discomfort. Always investigate this type of behaviour rather than simply dismissing it as part of their condition.
  5. Physical signs. Observation for physical changes which may suggest pain, is an essential part of hands-on care. Skin lesions, blisters or the development of pressure sores may be the cause of pain and can be treated effectively if spotted promptly. Abdominal distension may suggest constipation or urinary retention leading to abdominal pain. Joint deformities may indicate arthritis or trauma requiring urgent medical attention.


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