Caregiver-assisted pain coping skills training for dementia

Over five million persons in the United States are living with Alzheimer's disease and related dementias (referred to as “persons with dementia” or PWD). Most patients with early to moderate disease reside in the community and require significant help from family caregivers. Community dwelling PWD and their family

caregivers represent a burgeoning and vulnerable population with significant unmet medical and psychosocial needs, one of which is pain management. Pain in PWD is common and compounds the impact of dementia, causing distress, discomfort, increased disability, and neuropsychiatric symptoms. Treatment for pain often

focuses primarily on pharmacotherapy which has significant limitations for older adults. Pain in PWD also causes increased stress for family caregivers who are themselves at risk for adverse mental and physical health outcomes. To date, the overwhelming majority of literature on pain management in PWD focuses on

patients with advanced disease living in long term care facilities. Given the prevalence of pain in community dwelling PWD and the impact of pain on patients and caregivers, it is important to target pain management efforts to both patients and caregivers together. Pain coping skills training (PCST), a non-pharmacological pain

management approach based on cognitive behavioral principles, has been found to be efficacious among older adults without dementia. A caregiver-assisted PCST protocol adapted to meet the needs of PWD and their caregivers represents a novel approach to pain management in this population that holds the promise of

decreasing patient pain, disability, and psychological distress, and caregiver burden. This NIH Stage 1A study aims to refine a caregiver-assisted PCST intervention and develop study procedures in preparation for a well- powered Stage 2 randomized clinical trial. Aims of the proposed study are: (1) To refine the caregiver-assisted

PCST intervention specifically for patients with mild-moderate dementia and determine the optimal duration (e.g., number of sessions, session length) and mode of treatment delivery (e.g., in-person vs. remote) with input from Community and Professional Advisory Boards and through conducting a single-arm pilot study with

30 patient-caregiver dyads. (2) To identify optimal recruitment and retention strategies with input from our Community and Professional Advisory Boards. We will pilot and refine these strategies in the process of piloting the intervention. Ultimately, this program of research has the potential to meaningfully advance the

clinical care of PWD and pain and enhance their quality of life and that of their family caregivers.