Understanding brain donation decisions: Predictors of indecision and change over time from the Cleveland Alzheimer's Disease Research Center

Abstract

INTRODUCTION

Little is known about factors influencing indecision or changes in brain donation program (BDP) enrollment status among Alzheimer's disease and related dementias research participants. This study examined demographic features associated with these decisions in participants from the Cleveland Alzheimer's Disease Research Center (CADRC).

METHODS

Demographics and BDP status were extracted from the CADRC database and analyzed based on initial and current BDP enrollment status.

RESULTS

At baseline, BDP enrollees were more likely to be older, cognitively impaired, White, partnered, have more years of education, and have a relative or partner serving as a study partner. Participants who changed BDP status over time were more often cognitively unimpaired and had more CADRC visits. Fewer years of education predicted changing from “undecided” to “yes.” Enrollment rates varied significantly between study staff.

DISCUSSION

Several demographic features are associated with uncertainty or change in BDP enrollment. These factors should be further examined to optimize ADRC participants’ experience.

Highlights

• Twenty-one percent of participants changed their brain donation program (BDP) enrollment status during the study.
• BDP enrollment changers were more often cognitively normal and had more study visits.
• Fewer years of education predicted switching BDP status from undecided to yes.
• BDP enrollment and change rates varied between interactions with site staff members.