Addressing Disparities in Alzheimer's Disease and African-American Participation in Research: An Asset-Based Community Development Approach.

Abstract

Alzheimer's Disease and related dementias (ADRD) remain a worldwide burden to address for persons with ADRD, their family members, and others at risk. ADRD should be recognized as a public health priority (Barnes, 2019), particularly among African Americans for several reasons. Currently, African Americans have 2–4 times the risk of developing ADRD than non-Hispanic Whites (Barnes and Bennett, 2014; McDonough, 2017). Given the higher presence of co-morbid conditions and associated health disparities when comparing African Americans to other racial and ethnic groups (Dillworth-Anderson and Boswell, 2007; Hill et al., 2015), African Americans can have worse physical health and quality-of-life. These factors can also increase costs of care for persons with ADRD and their family members. African Americans could be further burdened by significantly higher costs of care than Whites (Gilligan et al., 2012) and lack of adequate insurance. Despite these disparities, African Americans are still underrepresented in ADRD research. Cultural and institutional barriers include primary reliance on passive recruitment strategies (e.g., postings, flyers, database recruitment) not tailored to communities of color, implicit bias, and mistrust of medical communities, academic institutions, and researchers (Ballard et al., 2010; Scharff et al., 2010; Williams et al., 2010; Shin and Doraiswamy, 2016). Investigator inclusion and participation criteria deemed more feasible for White participants (ex. Medical eligibility criteria, job restrictions, time, and financial requirements to go to study sites) also undermine or limit the participation of African Americans and other participants of color (Wendler et al., 2006; Konkel, 2015). Using asset-based community development (ABCD) approaches (Kretzmann and McKnight, 1993) can lead to improved access and delivery of care and ADRD knowledge among African Americans, increased social support for African-American caregivers and elders living with or at risk for ADRD, and increased African-American representation in neuroscience research. In this article, we describe the development and implementation of an ABCD approach for increasing African-American representation in the Wisconsin Registry for Alzheimer's Project (WRAP).