East Harlem's Latinos and Alzheimer's Disease: Community-Engaged Identification of Needs and Development of Solutions

Latinos constitute the fastest growing subpopulation of older adults in the U.S., and this growth will be accompanied by a dramatic increase in the number of Latinos with Alzheimer’s disease and related dementias (ADRD)—from under 200,000 to 1.3 million by 2050. Latinos face higher risk of ADRD due to known risk factors such as lower education levels and greater prevalence of vascular diseases.

Established in 2014, Silberman Aging, A Hartford Center of Excellence in Diverse Aging, has a mission to promote the health and well-being of underserved and underrepresented older adults through community-engaged practice. A Community Leadership Council (CLC), comprised of community leaders, service professionals, older adults, and family caregivers, described increasing knowledge about ADRD and related services as a priority. A needs survey of key stakeholders reflected the same finding. Our own research finds that many Latinos delay seeking help for memory loss and behavioral changes for several reasons: (1) a perception of these symptoms as normal aging, (2) lack of information about ADRD, (3) lack of information about diagnostic and treatment services, and (4) financial, language, immigration status and other barriers precluding access to services.

Methods

The CLC galvanized a coalition of community and academic partners using Critical Participatory Action Research (CPAR) to design and test an intervention that builds the capacity of helpers naturally embedded in the neighborhood – such as clerks, building superintendents, barbers, and hair dressers –to provide culturally competent information about ADRD and relevant services to older adults. The El Barrio SHARE - Supporting Natural Helpers with ADRD Resources and Education, recognizes that these natural helpers (NH) are in a unique position to be first responders to a historically underserved and under-diagnosed population.

Results

Guided by CPAR, the coalition and its CLC designed the following components of an intervention (1) a curriculum and supplemental educational materials on ADRD compatible with the health literacy needs of Latinos in EH, (2) a strategy for recruitment and training of NH; (3) a research methodology to evaluate the effects of the training on knowledge, skills and self-efficacy of NHs; and (4) instruments to measure increased knowledge of healthy aging, ADRD and relevant services; increased engagement skills; increased ability to refer individuals to accessible and effective screening, treatment and support resources; and increased sense of competence/self-efficacy in achieving these aims. The development of this intervention through CPAR has resulted in several collaborative proposals seeking funding to carry out a multi-year implementation and evaluation of the intervention.

Conclusions and Implications

CPAR in multicultural communities is a promising approach to addressing challenges in hard-to-reach populations. The SHARE initiative illustrates how disparities in care for ADRD in an urban Latino community might be addressed. 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 will contribute to efforts to reduce ADRD care disparities in medically underserved Latino communities.