Caregiver–provider communication about pain in persons with dementia

Abstract

Background Pain in older persons with dementia is both under-detected and under-managed. Family caregivers can play an important role in addressing these deficiencies by communicating their care recipient’s symptoms and behaviors to medical providers, but little is known about how caregivers and providers approach pain-related discussions in the context of dementia. The goal of this study was to explore how ambulatory care providers and family caregivers of persons with dementia view pain communication. Methods In-depth, semi-structured interviews were conducted with family caregivers ( n = 18) and healthcare providers involved in dementia care ( n = 16). Interviews focused on three specific content areas: (1) caregivers’ roles in communicating about pain in persons with dementia, (2) challenges experienced when communicating about pain in persons with dementia, and (3) strategies and recommendations for optimizing communication in this context. All interviews were audio-recorded, transcribed, and analyzed using the constant comparative method of data analysis. Results Caregivers and providers described various roles that caregivers assumed in communication processes, such as serving as historians, interpreters, and advocates. They identified two key features of problematic communication—receipt of inadequate information and interpersonal conflict about the care recipient’s pain—and articulated how ambiguity around pain and dementia, as well as preexisting beliefs and emotions, contributed to communication challenges. They also offered several suggestions to improve caregiver–provider communication processes, including the use of (1) written records to enhance the accuracy of caregivers’ reports and ensure that providers had specific information to inform symptom management and treatment plans, (2) pain scales and follow-up discussions to establish baseline data and clarify treatment recommendations, and (3) collaboration and rapport-building strategies to validate the caregivers’ contributions and maximize a team-based decision-making. Conclusion Receipt of inadequate information and interpersonal conflict are key challenges to caregiver–provider communication regarding pain in persons with dementia. Written records, pain scales, and rapport-building strategies may help to address these challenges.