Early in my career, while at the University of British Columbia, I was conducting research on the early detection of Alzheimer’s Disease. One day, a senior colleague Dr Ken Craig walked into my office with an idea. Ken was conducting research on pain assessment in neonates who are a non-verbal population. Ken pointed out to me that I also work with a population, who at the later stages of their health condition (Alzheimer’s Disease), tend to have limited ability to communicate verbally and that pain assessment would then present a significant challenge in older adults with moderate to severe dementia. Ken suggested that we could adapt his model of using non-verbal facial pain behavior to understand pain in severe dementia – a model that he had previously applied to neonates. This is what started it all.

Once I began work in the area, I discovered that a human tragedy was taking place with unresolved, underdetected and undertreated pain problems leading to unnecessary suffering in large numbers of people. I wanted to make a difference.

There are multiple non-verbal behaviors that often accompany pain (for example, facial expressions characterized by a tightening of the eye orbits, brow lowering and raising of the cheeks, paralinguistic vocalizations, limping, rubbing the affected area and so on). In severe dementia, pain can also lead to challenging behaviors that caregivers may misattribute to a psychiatric problem.

It is important for caregivers to be aware that when older adults with moderate to severe dementia display challenging behaviors, the possibility of an underlying pain problem should be explored.

It is not so much that older adults with dementia do not recognize the pain experienced. The problem is that the brain deterioration that accompanies dementia prevents the individual from effectively communicating to others what they are experiencing. Caregivers may also have difficulty recognizing other negative subjective states (for example, hunger) that the person may be experiencing.

Patients with mild to moderate dementia can usually tell others when they are in pain. They can also often respond to simple pain scales (such as a zero to 10 scale where zero represents no pain and 10 represents the worst pain imaginable). If the person has difficulty giving valid responses to zero to 10 numeric scales, sometimes they may be able to report their pain using verbal scales consisting of verbal descriptors such as “mild”, “moderate”, “severe” and “very severe”.

For people who cannot report their pain verbally, or to supplement verbal report, there are specialized observational tools designed for health staff, such as the Pain Assessment Checklist for Seniors with Limited Ability to Communicate-II (PACSLAC-II).

For more guidance refer to the document entitled “Guidelines on How to Assess Pain in Dementia” on this page: https://www.seepainmoreclearly.org/resources

Promising technologies are under development that could allow for the identification and monitoring of pain behaviors in long-term care environments and elsewhere. As things now stand, many long-term care facilities do not have sufficient resources to systematically assess pain often enough. This results in pain problems often being missed and not recognized in people living with dementia.

Once fully developed, automated computer vision technologies (combined with facial recognition software) would be able to identify non-verbal signs of pain, as long-term care residents go about their daily routines. Once the technology could identify a number of pain behaviors displayed by a resident, it would alert healthcare staff that pain is suspected. Such technologies have the potential of addressing the need for frequent pain assessments in situations where long-term care facilities are under-resourced and understaffed.

Untreated pain in dementia can lead to challenging behaviors. These behaviors are often misattributed to psychiatric causes rather than to pain and patients may be treated with psychotropic rather than analgesic medications. The use of psychotropic medications in frail older adults may pose significant risks (for example, risks of falls and stroke). Persistent pain also increases the risk of developing comorbid conditions (for example, depression) and sustaining injurious falls.