Reducing Inequalities in Access to Knowledge and Resources Addressing Dementia in a Latino Community

Background and Purpose: Latinos constitute the fastest growing subpopulation of older adults in the U.S. With this growth comes a dramatic increase in the number of Latinos with Alzheimer’s disease and related dementias (ADRD), to a projected nearly 1.3 million by 2050. Lower education levels and greater prevalence of vascular diseases put Latinos at higher risk of ADRD.

The need for culturally-tailored ADRD health education and obstacles to services for Latinos has been well established. Many Latino older adults delay help-seeking for ADRD symptoms due to lack of knowledge about ADRD and substantial service barriers. In Latin America and the U.S., researchers have demonstrated that promotores de salud (health promoters) can harness support systems to improve health outcomes. We test the hypothesis that natural helpers (NHs) embedded in the neighborhood – including clerks, building superintendents, and hairdressers – can be trained and galvanized to provide culturally-sensitive information about ADRD and relevant services to older adults in their community.

Methods: We used Community-Based Participatory Research (CBPR) to design, develop and pilot an intervention to use NHs in East Harlem, NYC, to provide information, resources, and referral to a single point of entry for a bilingual, bicultural social worker to support and assess Latino older adults.

There were several steps to this process. We formed a Community Leadership Council (CLC), comprised of community leaders, service professionals, older adults, family caregivers, and academic researchers. The CLC developed community assessment surveys (in Spanish and English) of service providers as well as older adults and their caregivers to determine community health priorities. The provider survey was distributed electronically to 80 community agencies, and the older adults/caregivers survey was hand-delivered to 30 agencies. We collected 63 completed surveys, which were analyzed using descriptive statistics for respondents’ demographics and content analysis for areas of identified need. Drawing on these findings, the CLC developed a pilot intervention and tested it in collaboration with eight community-based aging services organizations.

Findings: Survey respondents prioritized the need for knowledge about ADRD assessment, treatment, and supportive services. The pilot intervention consisted of: (1) a culturally-sensitive curriculum and educational materials on ADRD compatible with the health literacy needs of Latinos; (2) a NH recruitment and training strategy; (3) a methodology to evaluate the training’s effects on knowledge, skills and self-efficacy of NHs; and (4) instruments for outcome measurement (increased knowledge and engagement skills, increased ability to refer individuals to resources, and increased sense of competence/self-efficacy). 

Conclusions/Implications: CBPR is a promising approach to identifying and addressing health disparities in hard-to-reach populations. This initiative used to develop and pilot an NH intervention to promote awareness and referral of older adults with ADRD in an urban Latino community. Timely detection of ADRD among Latinos can result in slower progression of dementia or treatment of chronic conditions such as diabetes or depression that exacerbate cognitive impairment, and also provide much-needed supports to persons with ADRD and family caregivers. Knowledge gained from this study may contribute to efforts to reduce ADRD care disparities in medically underserved Latinos in urban communities.