Caring4Caregivers: A theory-driven mobile solution to promote self-care and well-being among caregivers of individuals with Alzheimer’s andrelated dementias

7. Project Summary/Abstract Over 11 million Americans are currently providing unpaid care to a family member or friend with Alzheimer's disease or a related dementia (ADRD). While caregiving can be a positive experience that brings meaning and an increased sense of purpose, it can also take a toll. Nearly 60% of ADRD caregivers rate their emotional distress as high or very high, and over 30% suffer from depression. Caregivers with distress have higher healthcare utilization and costs and provide poorer quality care to their care recipient. Further, employed caregivers have decreased productivity and higher absenteeism due to their caregiving responsibilities. With the aging of the US population, the number of Americans living with ADRD is expected to triple in the next 30 years, which will lead to a drastic increase in the number of people who care for them. Thus, there is an urgent need for effective, easily disseminable interventions that promote the well-being of ADRD caregivers. As a part of our pilot development, Pro-Change conducted extensive formative qualitative and quantitative research to guide the development of a digital intervention prototype, Caring4Caregivers (C4C). Based on the Transtheoretical Model of Behavior Change (TTM), the program uses an approach to facilitate progress through the stages of change for using five self-care behaviors critical to the well-being of ADRD caregivers: 1) becoming educated about your family member or friend's stage of illness and needs; 2) figuring out your strengths and limits; 3) searching for and accepting outside help where needed; 4) taking time each day to care for yourself; and 5) getting emotional support. Intervention components, designed to fit into the lives of busy ADRD caregivers, include a brief assessment with immediate feedback and guidance; daily stage-matched text messages; and a web portal with an Information Center and stage-matched activities for each self-care behavior. In a 1-month pilot test involving 52 ADRD caregivers with low subjective well-being, C4C was well- received, and participants experienced statistically significant pre-post improvements in well-being and self- care behaviors. In the research we are proposing, the primary aims are to fully develop the C4C intervention, incorporating what was learned in the pilot, and to assess the intervention's efficacy in a 9-month trial involving 234 ADRD caregivers. Participants will be randomly assigned to the C4C condition or to an attention control condition. Efficacy of C4C will be assessed by comparing changes in subjective burden, emotional and physical well-being at 3, 6, and 9 month follow-up in those randomized to the treatment vs. control conditions. Secondary outcomes will include changes in depression, caregiver risk, and number of self-care behaviors. Analyses will assess whether intervention effects are moderated by intervention “dose” and key participant characteristics, including gender, race, age, who the caregiver is caring for, and number of self-care behaviors at baseline. The successful completion of Phase II will set the stage for disseminating an evidence-based caregiver well-being intervention to employers, wellness platform providers, and other organizations.