R01AG079932

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

Weill Medical College Of Cornell University

TO ENCOURAGE BIOMEDICAL, SOCIAL, AND BEHAVIORAL RESEARCH AND RESEARCH TRAINING DIRECTED TOWARD GREATER UNDERSTANDING OF THE AGING PROCESS AND THE DISEASES, SPECIAL PROBLEMS, AND NEEDS OF PEOPLE AS THEY AGE. THE NATIONAL INSTITUTE ON AGING HAS ESTABLISHED PROGRAMS TO PURSUE THESE GOALS. THE DIVISION OF AGING BIOLOGY EMPHASIZES UNDERSTANDING THE BASIC BIOLOGICAL PROCESSES OF AGING. THE DIVISION OF GERIATRICS AND CLINICAL GERONTOLOGY SUPPORTS RESEARCH TO IMPROVE THE ABILITIES OF HEALTH CARE PRACTITIONERS TO RESPOND TO THE DISEASES AND OTHER CLINICAL PROBLEMS OF OLDER PEOPLE. THE DIVISION OF BEHAVIORAL AND SOCIAL RESEARCH SUPPORTS RESEARCH THAT WILL LEAD TO GREATER UNDERSTANDING OF THE SOCIAL, CULTURAL, ECONOMIC AND PSYCHOLOGICAL FACTORS THAT AFFECT BOTH THE PROCESS OF GROWING OLD AND THE PLACE OF OLDER PEOPLE IN SOCIETY. THE DIVISION OF NEUROSCIENCE FOSTERS RESEARCH CONCERNED WITH THE AGE-RELATED CHANGES IN THE NERVOUS SYSTEM AS WELL AS THE RELATED SENSORY, PERCEPTUAL, AND COGNITIVE PROCESSES ASSOCIATED WITH AGING AND HAS A SPECIAL EMPHASIS ON ALZHEIMER'S DISEASE. SMALL BUSINESS INNOVATION RESEARCH (SBIR) PROGRAM: TO EXPAND AND IMPROVE THE SBIR PROGRAM; TO INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL RESEARCH AND DEVELOPMENT; TO INCREASE SMALL BUSINESS PARTICIPATION IN FEDERAL RESEARCH AND DEVELOPMENT; AND TO FOSTER AND ENCOURAGE PARTICIPATION OF SOCIALLY AND ECONOMICALLY DISADVANTAGED SMALL BUSINESS CONCERNS AND WOMEN-OWNED SMALL BUSINESS CONCERNS IN TECHNOLOGICAL INNOVATION. SMALL BUSINESS TECHNOLOGY TRANSFER (STTR) PROGRAM: TO STIMULATE AND FOSTER SCIENTIFIC AND TECHNOLOGICAL INNOVATION THROUGH COOPERATIVE RESEARCH DEVELOPMENT CARRIED OUT BETWEEN SMALL BUSINESS CONCERNS AND RESEARCH INSTITUTIONS; TO FOSTER TECHNOLOGY TRANSFER BETWEEN SMALL BUSINESS CONCERNS AND RESEARCH INSTITUTIONS; TO INCREASE PRIVATE SECTOR COMMERCIALIZATION OF INNOVATIONS DERIVED FROM FEDERAL RESEARCH AND DEVELOPMENT; AND TO FOSTER AND ENCOURAGE PARTICIPATION OF SOCIALLY AND ECONOMICALLY DISADVANTAGED SMALL BUSINESS CONCERNS AND WOMEN-OWNED SMALL BUSINESS CONCERNS IN TECHNOLOGICAL INNOVATION.

93.866 - Aging Research

National Institute on Aging (NIA) [HHS - NIH]

New York, New York 100654805 United States

Single Zip Code

Dementia Care and Caregiver Support Intervention Research (R01 Clinical Trial Required) (PAR-21-307)

Amendment Since initial award the total obligations have increased 276% from $849,117 to $3,192,749.