Pain often misunderstood in people living with dementia, report reveals

Subtle behavioural changes such as restlessness, changes in body language, speech and sleep patterns, appetite and facial expressions can all indicate the presence of pain in people with dementia, a new report reveals

Research to show the importance of non-verbal indicators and digital systems for assessing pain in people living with dementia has been published as part of World Alzheimer’s Day (Monday 21 September) by PainChek.

The report investigates the complex relationship between pain and dementia, how pain affects the behaviour of people living with dementia, the main issues with assessing pain and methods to overcome these.

Common symptoms attributed to Alzheimer’s or other dementias, such as aggression, agitation, loss of inhibitions and anxiety, are mistakenly not considered indicators of pain.

Professor Jeff Hughes, chief scientific officer at PainChek said: “At least 50 percent of people living with dementia in the UK’s 18,000 care and residential homes regularly experience pain.”

Professor Jeff Hughes

Key findings from the report:

  • Self-report methods of pain assessment are not suitable for people living with dementia.
  • Non-verbal indicators are an important indicator of pain.
  • Effectively assessing pain ensures you can either identify the root cause of the behaviours to ensure residents receive the most appropriate and effective treatments.
  • Paper-based systems should be replaced with digital point-of-care systems.
  • In a study of 169 patients, 29 percent of pain episodes had no documentation concerning that resident’s pain. Technology should be used overcome the gap in pain documentation and ensure care providers can use evidence-based pain management practices.
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