Factors Contributing to Dementia Caregiving and Clinical Trial Participation in an Ethnically Diverse Sample

Abstract Introduction Informal caregiving of Alzheimer’s disease and related dementias (ADRD) is impacted by various factors including race/ethnicity, socioeconomic status (SES), and care recipient behavioral and psychological symptoms of dementia (BPSD). Caregiver-targeted interventions should consider these factors as well as the impact they have on clinical trial participation. Method First, we examined recruitment methods in a racially/ethnically diverse sample. The call-to-consent ratio was examined for recruitment occurring via 1) “Cold Call” to patients from a health system registry, and 2) “Trusted Messenger” where research staff called patients referred from a memory care physician. Second, baseline data from a large-scale clinical trial was examined (N = 167) to identify differences among various demographic groups. One-way ANOVAs were conducted to examine differences in caregiver burden, self-efficacy, perceived social support, and care recipient BPSD, and the effects of SES on these variables. The sample consisted of White (n = 121), Black/African American (n = 35) and Hispanic/Latino (n = 11) caregivers. Results Enrollment rate was 23.88% for participants recruited via the “trusted messenger” method and 1.18% for those recruited from “cold calls” (z = 15.11, p ≈ 0.0000). Hispanic participants reported less self-efficacy in obtaining respite (p=.018). No other significant differences across ethnic/racial groups were identified. Education level and employment status were significantly associated with caregiver burden (p=.017; p=.016), higher household income was associated to perceived social support (p<.001) and self-efficacy of controlling upsetting thoughts (p=.024). Conclusion SES significantly impacts the caregiver experience, especially among Hispanics, and recruitment from a trusted source is effective for racial/ethnically diverse participation.