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.
