The pain identification and communication toolkit: a training program to support family caregivers of persons with ADRD

Pain is highly prevalent, yet under-detected and under-managed, in older persons with Alzheimer’s Disease and Related Dementias (ADRD). ADRD family caregivers are well situated to facilitate timely identification and management of pain symptoms in their care recipients, but lack knowledge and training in these areas. This paper describes the protocol for a randomized controlled trial evaluating the efficacy of the Pain Identification Communication Toolkit (PICT), a multicomponent intervention designed to enhance caregivers’ abilities to recognize pain symptoms and communicate those symptoms to health care providers. The trial uses a two-group parallel design in which caregiving dyads (older adults with comorbid diagnoses of ADRD and pain and their family caregiver) are randomized to PICT or a control condition. Target enrollment is 220 dyads. Caregivers in both study arms complete four weekly sessions (time to completion ranges from 30 to 60 min) delivered by a trained interventionist. In the PICT sessions caregivers receive training on observational pain assessment and effective techniques for communicating pain symptoms to healthcare providers. The comparison group controls for time and attention and focuses on health-related topics, such as sleep, exercise, and nutrition. Caregivers complete assessments at baseline (pre-intervention), post-intervention (1-month), and follow-up (3-months and 6-months after intervention completion). Older adults’ sociodemographic and health characteristics are abstracted from their electronic health record (EHR) at the same timepoints. Primary outcomes are caregivers’ recognition and communication of pain. Secondary outcomes include older adult’s pain treatments and behavioral disturbance, and caregiver distress and burden. Caregivers’ self-efficacy in pain recognition and communication is evaluated as a putative mechanism of action. PICT is the first intervention to train family caregivers of community-dwelling older adults with ADRD in pain symptom recognition and communication. The trial will evaluate PICT’s efficacy and provide crucial data regarding its mechanisms of action, laying the foundation for future refinement and implementation in real world care delivery. The clinical trial is registered at ClinicalTrials.gov under NCT06168604 (December 12, 2023).