Supporting Family Caregivers of Persons with Dementia

Project Summary Efforts to accurately estimate the prevalence of pain and quality of pain management in the population of patients with Alzheimer’s Disease and Related Dementias (ADRD) have met with varied success. Communication about pain can be extremely challenging for patients with advanced dementia, and the etiology of pain difficult to determine. In addition, patients may resist pain treatments due to their inability to understand the purpose of analgesia and may receive decreased benefit from analgesia due to the disruption of the placebo effect. Family caregivers (family members, spouses, friends or others who assume the critical caregiving role) are at high risk for chronic stress, deteriorating physical health, financial difficulties, and premature death. They suffer from high rates of depression, anxiety and grief; pain management for their patients has been one of the most commonly expressed concerns. Based on preliminary work whereby we examined pain management challenges and needs of caregivers of patients with ADRD, we designed a behavioral intervention entitled ENCODE to assist caregivers in effectively identifying and communicating their pain management challenges and needs. We propose a 5- year randomized clinical trial in which caregivers of patients with ADRD will be randomly assigned to a group receiving standard care with the addition of “friendly calls” (attention control group) or a group receiving standard care with the addition of the ENCODE intervention (intervention group). The specific aims are to assess the impact of the intervention on caregiver outcomes including quality of life, health, anxiety and depression, and their perceptions of the intervention. Additionally, in order to facilitate the adoption of the intervention in practice we will conduct a cost analysis demonstrating the costs associated with its delivery and identify barriers and facilitators to adoption.