Could negative behaviors by patients with dementia be positive communication? Seeking ways to understand and interpret their nonverbal communication

Abstract In interactions with caregivers, patients with dementia have communication challenges that are common and worrisome to families. Family and professional caregivers find it challenging to “guess” or “interpret” what their patients with dementia are trying to tell them. In this creative controversy article, we discuss how family and professional caregivers can seek to understand and correctly interpret the nonverbal communications of patients with dementia (behaviors, actions, facial expressions, and vocal sounds). Equipping family and professional caregivers with the resources to interpret the nonverbal communications of patients with dementia requires a commitment to in‐service and family education in healthcare facilities. Nurses could play a critical role in raising the awareness among the public about the potential changes and declines in verbal communications of the patients with dementia.


| INTRODUCTION
This section of the Nursing Forum is set aside to allow authors to propose "wild ideas" for our consideration. A Creative Controversy aims to break with traditional thinking and pose a new way of considering an issue.
Sometimes these ideas are a slight stretch of the imagination; other times, they are radical departures from the norm. Both are designed to stimulate conversation about a topic that concerns the profession. We are pleased to bring readers this Creative Controversy.

| Problem
In interactions with healthcare providers, patients with dementia (Alzheimer's disease and others) have communication challenges that are common and worrisome to family caregivers. 1 The challenges increase as dementia progresses, primarily because of the cognitive decline that affects a patient's ability to understand and verbally communicate their opinions and feelings (e.g., pain and discomfort), especially during end-of-life care. 2,3 However, clinical practice research into assessing the decision-making capacity of dementia patients for healthcare and matters of daily living are limited. 1 The World Health Organization 4 urged the engagement of patients and their family members to support each patient's journey to safer healthcare and to ensure a constant flow of information between patients, family caregivers, and healthcare providers. 4 Understanding the needs of patients with dementia who are nonverbal could mitigate the risk of such patients developing or being labeled as urine or feces incontinent. 5 Edwards et al. 5 called for action to incorporate verbal and nonverbal communication skills training for caregivers of patients with dementia. 5 In this short article, we explore how family and professional caregivers can seek to understand and correctly interpret the nonverbal communications of patients with dementia (behaviors, actions, facial expressions, and vocalizations). One of the authors, a training expert for healthcare services, believes that learning how to interpret the nonverbal clues presented by patients with dementia, especially those in the late dementia stage, is crucial. Family and professional caregivers have to interpret those clues, often perceived as negative behaviors. Nonverbal behaviors in patients with dementia are often a way of delivering a message. 6 In other words, patients with dementia, especially those in the late dementia stage, often communicate via nonverbal cues, and family and professional caregivers must be trained to interpret these cues. Actions are desperately needed to incorporate verbal and nonverbal communication skills training for family and professional caregivers of patients with dementia. 5 However, based on the authors' personal experience and observations, family and professional caregivers of patients in the late dementia stage often overlook their patients' nonverbal cues. In some instances, family and professional caregivers find it challenging to "guess" or "interpret" what their patients are trying to tell them. Patients with advanced dementia might still be able to say words or phrases but might experience increased difficulty in verbally communicating pain. 10,11 Caregivers could encourage nonverbal communication (e.g., asking patients to point and use touch, sights, or sounds). 11 Still, are any resources available to help caregivers interpret body language, facial expressions, or negative vocalizations by such patients? Yes, although the interpretations are still developing.

| Understanding nonverbal messages
The story of the 82-year-old father already mentioned 1 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 Shin 12 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. 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][18][19] For example, the Pain Assessment in Advanced Dementia scale 17 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 Cognition 13 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 Tool 21,22 has good reliability to assess pain in patients with moderate-tosevere 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.

| Internet resources for interpreting nonverbal communication
Family and professional caregivers can learn the "language" of patients with dementia. 8,9 The Dementia Dictionary 23  We used the keyword "pain" to search interpretations within the Dementia Dictionary, 23,24 locating 13 unique interpretation requests and corresponding interpretations that mentioned "pain" or "painful" feelings (Table S1)

| CONCLUSIONS
Communication skills training for family and professional caregivers of patients with dementia, especially patients who have difficulty with verbal communication, has to be developed in partnership with family caregivers and healthcare staff. 5 For example, the pain felt by patients with dementia who are nonverbal is real and is associated with symptoms of psychosis (for instance, delusion). 25 Before a decision is made to treat symptoms of psychosis either pharmacologically or nonpharmacologically, regular pain assessments and timely recognition of expressions of pain in patients with dementia (e.g., change in nonverbal communication, and agitated behavior) should be the rule and part of the clinical practice. 25,26 During nursing home stays, patients with dementia might exhibit unusual symptoms (e.g., pain and agitation) and receive lessthan-optimal symptom control from admission to end of life. 27 Equipping healthcare professionals with the resources to understand the nonverbal communications of patients with dementia (such as "pain recognition") accords with a commitment by healthcare facilities for in-service education. 12,21,22,28 In addition, family caregivers should be supported with access to resources such as the Alzheimer's Association 7 and the Dementia Dictionary 23 websites that will help them understand and interpret the nonverbal communications of their loved ones with dementia. 29 Also, we need to raise awareness among the public about the potential changes and declines in verbal communications of patients with dementia. 7 Nurses could play a critical role in raising awareness in the medical and healthcare settings across the care continuum, including outpatient and community settings (e.g., lifelong learning institutes for retirees and community centers). Patients with dementia still can feel and sense! They could still have a strong desire to connect and communicate with their loved ones and professional caregivers. Are we here to listen to the nonverbal communications from patients with dementia? Yes, we are! We determine to hear the nonverbal communications of our patients or loved ones with dementia who may have lost their voices partially or entirely.