The role of demographic and health factors in a community‐engaged research approach to improve inclusion of underrepresented populations from the Study of African Americans and Latinas/os to Understand Dementia SALUD
Authors: Camuy Alicia M , Arentoft Alyssa , Cham Heining , Slaughter Alexander W. , Breen Elizabeth Anne , Oleas Denise S. , Schuck Lauren A , Coker Godfrey , Mindt Monica Rivera ,   Study of African‐Americans and Latinas/os for Understanding Dementia (SALUD)
Published: December 2023

Background

Alzheimer’s Disease (AD) and dementia inequities highlight the need to eliminate barriers and promote motivators for study engagement of underrepresented populations (URPs; e.g., non‐Latinx Black, Latinx, sexual/gender minoritized populations). Lower educational attainment and URP status are associated with lower research engagement rates. This study examined whether engagement in this community‐engaged research (CER) study of middle/older‐age adults differs according to ethnoracial identity, gender identity, income, age, education, acculturation, sexual orientation, cardiovascular risk, healthcare access, ethnic discrimination, stress, and loneliness.

Method

SALUD is an ongoing, longitudinal study in NYC whose aim is to examine genetic, cerebrovascular, sociocultural risk and resilience factors for dementia. CER strategies (i.e., sustained participation in community events/organizations, Community Science Partnership Board) were employed. The Perceived Stress Scale, UCLA Loneliness Scale, Perceived Ethnic Discrimination Questionnaire, Abbreviated Multidimensional Acculturation Scale, Healthcare Task Difficulty Questionnaire, and Northern Manhattan Study Neuromedical Evaluation were administered. Participants’ progress was coded as retained or dropped out of the study (DOS) for each visit in the study. Cross‐sectional analyses (t‐tests, chi‐square and Mann‐Whitney U‐tests) compared demographic, health, and psychosocial variables between those who completed the in‐person neuropsychological visit (i.e., ∼5 hour comprehensive neuropsychological battery, blood draw, saliva sample, neuromedical interview and questionnaires in a hospital; INP‐V) and MRI visit (i.e., ∼1 hour closed MRI scan; MRI‐V) with those who DOS.

Result

The sample (N = 145) was 53.8% female, older, and well‐educated (M
age = 65.25, SDage= 6.55, Meducation = 13.59, SDeducation= 3.23). URP study engagement was high: 31.7% non‐Latinx Black, 34.5% Latinx, and 33.8% non‐Latinx White. There were no significant differences in independent variables (e.g., ethnoracial, gender, discrimination) between the INP‐V and DOS groups (all p’s>.09). However, analyses revealed that the MRI‐V group (M = 13.42, SD = 3.07) had significantly fewer years of education than the DOS group (M = 14.15, SD = 3.71) (t(143) = 2.69, p<.01, 95%CI [0.39, 2.58]) other differences were observed (ps>.05).

Conclusion

This study’s CER‐based approach yielded a high level of URP study engagement. Contrary to previous findings, people with less education were more likely to complete the MRI visit suggesting a willingness to undergo more invasive procedures after establishing trust. CER‐based AD studies may help URP participants overcome participation barriers through collaboration with the community.