Perceptions, Knowledge, Incentives, and Barriers of Brain Donation Among African American Elders Enrolled in an Alzheimer's Research Program

Alzheimer's disease (AD) affects African American older adults at higher rates than their White counterparts (Froehlich, Bogardus, & Inouye, 2001), and AD is an increasingly significant concern for African American communities because its frequency is expected to double among Black individuals age 65 and older by 2030 (Plassman et al., 2007). (Please note: as part of the focus groups outlined in this article, we queried participants about whether they prefer for us to use the term “African American” or “Black.” Participants did not come to a consensus about which term to use, primarily because many do not identify solely as African American due to their Caribbean or African heritages [e.g., some participants identify as Black, African, and, as a result of being in the United States for an extended period of time, African American]. Participants suggested we use the terms interchangeably to represent Black and African American elders in our program, so we use these terms interchangeably here to respect our participants’ requests.) Although differential rates of AD among Black and White elders have been attributed to genetic and environmental factors (Harris, 1998; Luchsinger et al., 2001), additional research is necessary to more fully understand the disparity. In particular, neuropathological research is critical to advancing knowledge about AD because postmortem brain autopsy is the only definitive method to establish an AD diagnosis with important scientific and personal implications. First, clinicopathological comparisons enhance our ability to understand the clinical expression of AD and improve in vivo diagnostic markers. Second, direct examination of AD neuropathology contributes to the development and advancement of important treatment targets. Finally, because dementia is associated with hereditary risk factors, an AD diagnosis provides important family health information for surviving loved ones. However, compared with their White counterparts, African Americans are underrepresented in brain donation programs (Bonner, Darkwa, & Gorelick, 2000; Jefferson et al., in press). Although a body of literature exists on racial disparities in organ donation and clinical research participation (Corbie-Smith, Thomas, & St. George, 2002; Minniefield, Yang, & Muti, 2001; Terrell, Moseley, Terrell, & Nickerson, 2004), there is limited research on brain donation research participation in general and among African Americans in particular. In a study by Bonner and colleagues (2000) on a brain donation recruitment program for African Americans, 133 patients and family caregiver pairs were interviewed to assess reasons for donation preferences and to identify interested donors. Results suggested that brain donation barriers include familial objections, concerns about funeral delays, fears of disfigurement, mistrust about the underlying rationale for conducting the autopsy, and negative responses to procedural elements. Our own recent work suggests that African American elders may be less familiar with certain aspects of brain donation, as they are more likely than their White peers to believe that most religions do not support donation (Jefferson et al., in press). Research examining barriers to clinical research participation and organ donation consent may elucidate why African Americans are underrepresented in brain donation programs. Such participation barriers include general societal mistrust (Freimuth et al., 2001), mistrust in health care institutions and physicians (Boulware, Cooper, Ratner, LaVeist, & Powe, 2003; Freimuth et al., 2001; Minniefield et al., 2001), cultural mistrust (Corbie-Smith et al., 2002; Terrell et al., 2004), need for family support (Robbins, 2001), lack of awareness about donation needs and benefits (Callendar & Miles, 2001; Glasgow & Bello, 2007; Park, 1998), and religious myths (Hall et al., 1991). To increase organ donation program participation rates, researchers and medical staff must facilitate end-of-life discussions (McNamara et al., 1999) and ensure that next of kin are aware of their loved one's donation decision (S. E. Morgan, 2004). In addition, research on clinical research participation indicates that culturally sensitive strategies should be used with African Americans (Bonner & Miles, 1997). To better understand reasons for underrepresentation of African Americans in brain donation research programs, the present study aimed to (a) assess African American older adults’ knowledge about and perceptions of brain donation, (b) explore factors related to participating or not participating in a brain donation program, and (c) determine methods to increase African American brain donation rates.