Pain in Dementia: Use of Observational Pain Assessment Tools by People Who Are Not Health Professionals

Pain is prevalent among older adults but is often underestimated and undertreated, especially in people with severe dementia who have limited ability to self-report pain. Pain in patients with moderate to severe dementia can be assessed using observational tools. Informal caregivers (relatives of seniors with dementia) are an untapped assessor group who often bear the responsibility of care for their loved ones. Our objective was to evaluate the ability of laypeople to assess pain using observational measures originally developed for use by health care professionals. We employed a quasi-experimental design and presented videos depicting patients with dementia (portrayed by actors) displaying pain behaviors or during a calm relaxed state (no pain) to long-term care nurses and laypeople. Participants rated the pain behaviors observed in each video by completing two standardized observational measures that had been previously developed for use by long-term care staff. As expected, both laypeople and nurses were able to effectively differentiate painful from nonpainful situations using the standardized tools. Both groups were also able to discriminate among gradations of pain (i.e., no pain, mild, moderate, severe) and required comparable amounts of time to complete the assessments. We conclude that, as hypothesized, the instruments under study can be used for the assessment of pain by laypeople. This is the first study to validate these instruments for use by laypeople. The use of these tools by laypeople (under the guidance of health professionals) has the potential of facilitating earlier detection and treatment of pain in older adults with dementia who live in community settings.