Perceptions about Dementia Clinical Trials

Abstract

AbstractBackgroundThe research community has historically failed to enroll diverse populations in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient’s clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations, among dementia caregivers, in their decision to participate in clinical research as study partners.MethodWe embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of dementia caregivers, oversampling Black non‐Hispanic and Hispanic caregivers. They were asked about their willingness to participate in the trial with their care recipient, and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics, care recipient characteristics, and relational characteristics were analyzed as predictors of trial participation in a demographic model. In a second model, caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey‐weighted logistic regression.ResultThe sample consisted of 610 caregivers, including 156 Black non‐Hispanic and 122 Hispanic participants. In the demographic model, hypothetical trial participation was negatively associated with caregiver age [OR (odds ratio) = 0.46, P = <0.001], and with care recipient male gender [OR = 0.34, P = 0.007]. In the second model, responsibility to help others by participating in research was significantly associated with participation [OR = 1.56, P = 0.049], while the possibility of the care recipient experiencing serious side effects was negatively associated with participation [OR = 0.51, P = 0.003]. In both models there was no significant difference in hypothetical participation between non‐Hispanic Black and non‐Hispanic White caregivers, or between Hispanic and non‐Hispanic White caregivers.ConclusionHispanic and non‐Hispanic Black dementia caregivers were not less likely than non‐Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups, but may instead reflect structural barriers and historic exclusion from trial participation.