What predicts who becomes a study partner in an AD cohort study?

Background Studies of persons with Alzheimer’s disease (AD) and related dementias typically include “study partners” (SPs) who report on participants’ wellbeing and function. But little is known about what factors predict the type of person who steps into the role. Knowing this will inform barriers to recruitment into AD research. It may also offer a model to anticipate who will be a caregiver in early diagnosis and treatment of AD. Methods We analyzed data from the Health and Retirement Study’s (HRS) Aging, Demographics and Memory Study (ADAMS). ADAMS enrolled a subset of individuals in HRS and, for each of these subjects, a SP. HRS data were collected one year prior to the first ADAMS interview and provided a detailed family record of all living, legal and biologic, relatives and a spouse’s rating of their own health. ADAMS data provided who served as a SP reporting on subject instrumental and basic activities of daily living (IADL/BADL). Three distinct regression models examined how psychosocial factors predicted each of the three SP types: spouse, adult child, and other. Results Among subjects with spouses, multivariable analyses showed subject’s age and having a sister predicted that a spouse was less likely to serve as SP (both p<0.05). Among subjects with children, being a women, being older, having more children, more impairments in IADLS, and not having a spouse predicted that an adult child was more likely to serve as SP (all p<0.05). Having a spouse, more children, and having more years of education predicted that a non‐spousal and non‐child person was more likely to serve as SP while being a woman and having a daughter were associated with a lower probability that a non‐spouse and non‐child served as SP (all P<0.05). Conclusions Different factors predict the type of person who may serve as a SP. Our findings show patterns in interpersonal relatedness, educational attainment, and gender norms that may underlie differences in decisions about who serves as SP. This information may help inform recruitment and retention in AD research.