The Pain Identification and Communication Toolkit: A Training Program to Support Family Caregivers of Persons with ADRD

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PROJECT SUMMARY Up to 60% of older persons with Alzheimer’s disease and related dementias (ADRD) suffer from bothersome pain and nearly half experience pain-related activity limitations. Despite best-practice guidelines calling for routine pain assessment of persons with ADRD, pain is severely under-detected and poorly managed in this population. A major barrier to the identification and treatment of pain in persons with ADRD is impaired communication. As ADRD progresses, neurodegenerative changes impede individuals’ ability to understand and verbally articulate their discomfort. In such cases, reliable self-reports of pain are not feasible and behavioral assessment is recommended. Informal (family) caregivers are well situated to detect pain and facilitate management in persons with ADRD, given their extensive involvement in care activities. However, caregivers receive virtually no guidance or training in these areas. To address the challenges that ADRD caregivers face in recognizing and communicating about pain, the PI (Riffin) and her interdisciplinary team of Co-Investigators developed a manualized, multicomponent intervention, the Pain Identification and Communication Toolkit (PICT). PICT is informed by theories of behavior change and pain communication and includes (a) training in administering an observational pain assessment tool, (b) coaching in effective pain communication, and (c) building caregivers’ skills through routine practice. The team’s NIA-funded pilot trial with a racially and ethnically diverse group of caregivers (14% Black, 15% Hispanic, 8% multiracial) demonstrated the feasibility and acceptability of PICT, and preliminary impact on caregivers’ communication with healthcare providers. The proposed R01 builds on this prior research by using an Experimental Medicine approach, grounded in the Science of Behavior Change, to evaluate PICT’s efficacy, mechanisms of action, and potential moderators in a Stage II clinical trial. It will leverage the infrastructure of a community-based Managed Long-Term Care (MLTC) program in New York with wide socioeconomic and racial diversity to (1) determine the efficacy of PICT on caregivers’ pain recognition and communication (Primary Outcomes), caregivers’ distress and burden; patients’ physical function, behavioral disturbance, changes in pain treatments or regimens, and institutionalization (Secondary Outcomes), (2) identify the patient and caregiver factors that may moderate the effects of PICT on study outcomes, and (3) evaluate the mechanisms (theoretically-derived variables) by which PICT affects study outcomes. Overall, this research represents a critical step toward addressing the under-detection and under-management of pain in persons with ADRD, supporting the largely hidden but vital ADRD caregiver workforce, and laying the groundwork for a future multisite pragmatic trial.