The story of the 82-year-old father already mentioned1 underlines the frustration felt by family and professional caregivers and their need to interpret nonverbal communications (e.g., pain or discomfort expressed in behaviors and gestures) by patients with dementia. Ortega and Shin12 emphasized the importance of preparing clinicians to identify patients with non-English-language needs. It is critical to build a positive patient–clinician relationship in the setting of language discordance when the patient and the healthcare professional lack proficiency in the same languages. Also, clinicians need to navigate language assistance services and to communicate independently with the non-English-speaking people to whom they are providing direct care.12 However, communication with patients who have dementia and who no longer can communicate verbally is not mentioned.12 We recognize the need to communicate with non-English speakers effectively. We need the same, if not more, initiatives to communicate with nonverbal patients with dementia.

For timely pain management, caregivers are in desperate need of a way to interpret the nonverbal communications of patients with dementia.13 Pain is highly prevalent in patients with dementia who are nonverbal. Chronic pain is still undertreated in such patients because of changes in their perception and expression of pain.14 Near the end of life, patients with dementia might have increased pain when resting.13 Pain severity could predict a decline in daily living functioning for those patients.15 A systematic review showed strong scientific evidence for five body movements as pain indicators in older adults who had cognitive impairments and who could not self-report pain: physical aggression, agitation (restlessness), guarding, rubbing, and rigidity.16 However, additional studies are needed to validate the associations between pain in patients with dementia and their probably pain-related body movements and behaviors.16

In any care setting, family and professional caregivers can use validated observational tools to help identify probable pain in patients with dementia who have limited ability to self-report pain.13, 17-19 For example, the Pain Assessment in Advanced Dementia scale17 is a five-behavior-item observational tool with a total score ranging from 0 to 10 (0 = no pain, 10 = presenting pain behavior). Caregivers score what they see and hear with respect to breathing patterns, negative vocalization, facial expression, body language, and consolability for up to 5 min during and after active movement.17, 20 The scale was shown to detect significant differences in the scores before and after administration of pain medications.17 In another example, the Pain Assessment in Impaired Cognition13 instrument measures 15 items in three dimensions, for a total score ranging from 0 to 45 (0 = no pain, ≥3 = probably having pain).13 The three dimensions are facial expression (e.g., frowning, described as lowering and drawing brows together, narrowing eyes, raising upper lip, opening mouth, and looking tense), body movements (e.g., freezing), and vocalization (e.g., shouting).13

At home, family caregivers could potentially use validated observational tools (i.e., pain assessment in advanced dementia scale [PAINAD]; the revised pain assessment checklist for seniors with limited ability to communicate [PACSLAC-II]) to facilitate earlier pain detection in community-dwelling older adults with severe dementia.19 Evaluation of reliability showed that there were no statistically significant reliability coefficient differences between laypeople and caregiver staff working in the long-term care facilities to the PAINAD and the PACSLAC-II scores.19 In addition, healthcare facilities could adopt facial recognition technology to detect facial microexpressions related to pain while observers record the presence of other signs (e.g., whimpering and groaning; change in body language; and physical, physiologic, and behavioral changes).21, 22 The electronic Pain Assessment Tool21, 22 has good reliability to assess pain in patients with moderate-to-severe dementia. The electronic Pain Assessment Tool uses a 10-s video, mapping the face of a patient with dementia to automatically identify the presence of pain in real-time.