Why the program was developed
In spite of the fact that African American adults report lower levels of perceived risk for Alzheimer’s disease (AD), they are two to three times more likely than non-Hispanic Whites to suffer from AD. In addition, disparities related to race also exist in the severity of AD symptoms at time of presentation and in the survival rates among African Americans, suggesting delays in seeking care among this vulnerable population. Increasing knowledge and awareness of Alzheimer’s disease and dementia among African Americans is crucial for increasing awareness of their own risk, optimizing care, reducing disparities, and ultimately enhancing the quality of life of those diagnosed with AD. A more well-informed community can challenge cultural misconceptions of AD/dementia, detect first signs of dementia, and seek early treatment. To educate this community about AD, SC CTSI partnered with Dr. Karen D. Lincoln from USC’s Suzanne Dworak-Peck School of Social Work to develop BrainWorks.
Purpose of the program
BrainWorks is a community-based approach designed to address African Americans’ significantly low levels of basic knowledge about AD, as well as their low perceived risk for this disease. Brainworks provides important information about Alzheimer’s and dementia through a “talk show” format. These talk shows are conducted in a casual and entertaining setting; Dr. Lincoln and her colleagues serve as “guests” on a traditional talk show couch and share complex information in an approachable way.
How are the communities being engaged
BrainWorks included 235 African American participants (age 50 and over) who were recruited from senior centers, senior housing communities, churches, and social clubs over the course of two months. All participants completed pre and post surveys and attended a 60-minute “talk show” where the AD curriculum was delivered. In addition to the talk show educational component, As part of a pilot study to examine the effectiveness of text message-based Alzheimer’s disease education for African American elders, participants were randomized to three conditions that included daily text messages (general and culturally tailored) and usual care (standard printed materials about AD and research from reliable sources). Findings indicated that AD literacy increased as a result of BrainWorks, with the most marked increase among those participants who received culturally tailored text messages, followed by those who received general text messages. The smallest increase in AD literacy occurred among participants who received standard printed materials.
The BrainWorks project is an excellent example of community engagement, utilizing an interactive educational approach to engage a traditionally “hard to reach” population in research. In addition, the pilot study found that utilizing phone text messaging may be a more effective means of providing health education information compared to traditional pamphlets often disseminated by community physicians and other providers. While some providers and researchers may believe that technology and mHealth applications are not appropriate for aging or senior populations, this study suggests that technology such as mobile phone-based messaging can be an effective means to disseminate health-related information in a brief and digestible format to this population.