The impact of stressful and traumatic experiences on the well-being of caregivers and persons living with Alzheimer's disease and related dementias - Project Summary Two decades of research shows that the psychological well-being of unpaid family caregivers (CGs) is a significant determinant of quality of life for both the person with dementia (PWD) and CGs. One dominant model used to understand CG burden is the Pearlin stress process model, which takes a life course approach. Within this model, identified risk and protective factors include background factors (gender, race, age, socioeconomic status), primary stressors (PWD diagnosis, behavioral symptoms, functional dependency), secondary stressors (job-caregiving conflict, economic burden, altered relationships), social and personal resources (self-efficacy, coping), and outcomes (mental health factors (depression, anxiety), physical well- being, and burden). Based on our team’s clinical work with CGs, we hypothesize that another, previously unrecognized dimension of caregiver burden, Post-Traumatic Stress Symptoms (PTSS), may contribute to CG burden and depression. We hypothesize that exposure to potentially traumatic events and PTSS can contribute to caregiver burden in three ways: 1) exposure to potentially traumatic events prior to caregiving; 2) exposure to potentially traumatic events that occur in the course of caregiving (related to caregiving or not); and 3) the chronic stress of caregiving. This proposal builds on our pilot data from 25 CGs which showed that 40% of the sample had experienced at least one Adverse Childhood Event (ACE), 44% reported lifetime exposures of 4 or more traumatic events, 16% reported that caregiving for their PLWD was the most stressful event of their life, and 36% scored above the PTSD screening threshold for PTSS. PTSS scores were highly predictive of important caregiver outcomes, including self-efficacy, depression, grief, caregiver burden, and social support. We will expand this to a larger sample of 1200 CGs in the state of North Carolina. The aims of this proposal are to 1) determine the prevalence of caregiving-related PTSS and exposure to potentially traumatic events across the lifespan in CGs of PWD and assess the relationship between PTSS and overall exposure to traumatic events and specific exposure to interpersonal violence; 2) assess direct and indirect effects of PTSS on caregiver burden as well as determining relationships between PTSS and well-established risk and protective factors in CGs and PLWD; and 3) examine the impact of contextual factors important for identifying patients for future intervention, including geographic location (urban/suburban/rural), race, and CG relationship (spouse/adult child) on the prevalence of PTSS and associations with CG burden and depression. This foundational knowledge will provide evidence for the implementation of screening for post- traumatic symptoms and adaptation of caregiver support services to address PTSS in CG of PWD by determining 1) whether enough CG are affected to warrant interventions specifically addressing PTSS, 2) which CG are most likely to benefit from additional or targeted supportive services aimed at PTSS, and 3) what aspects of CG and PWD well-being are likely to be addressed by treating PTSS.
