Language
English
Publication Date
1-1-2026
Journal
Alzheimer's & Dementia
DOI
10.1002/trc2.70241
PMID
41970526
PMCID
PMC13069462
PubMedCentral® Posted Date
4-11-2026
PubMedCentral® Full Text Version
Post-print
Abstract
Introduction: Hispanic/Latino (H/L) adults are more likely than non-Hispanic White individuals to have Alzheimer's disease (AD), yet fewer than one in five H/L adults has apolipoprotein E (APOE) Ɛ4, underscoring gaps in understanding genetic risk across H/L heritage groups. H/L adults remain underrepresented in AD research that uses genetic data for participant stratification. To inform culturally appropriate educational materials for 16 million U.S. Spanish speakers, we identified culturally salient words Spanish-preferring H/L adults use to describe AD and genetic testing beyond APOE.
Methods: Community-residing, Spanish-preferring Mexican/Mexican American adults (n = 14) completed freelisting interviews, a method eliciting group-level concepts by identifying culturally salient words. Participant responses were analyzed using inductive thematic analysis and frequency calculations.
Results: Participants recognized AD as a memory disorder influenced by aging and genes but were largely unfamiliar with AD genetic testing. Testing was viewed as useful for diagnosis rather than future risk prediction, with limited perceived value for cognitively normal individuals without a family history. Despite this limited familiarity, participants expressed interest in AD research involving genetic testing.
Discussion: Findings suggested a perceived responsibility to use AD genetic testing despite limited awareness of its purposes, applications, and clinical implications. Participants' responses reflected a present-oriented health disposition: Genetic testing was viewed as appropriate once symptoms emerge rather than as a proactive tool for anticipating future decline, consistent with current clinical practice outside autosomal dominant AD. Educational materials co-created by community members and researchers may address these gaps by explaining both limitations of genetic testing in isolation and its potential future applications, including how genetic and multimodal biomarker data may inform risk estimation and prevention-focused decision-making. This approach may foster a future-oriented health disposition while remaining responsive to social and structural contexts. Future work is needed among other H/L heritage groups with differing social and structural experiences, migration histories, and language primacy.
Keywords
Alzheimer's disease, APOE, community dwelling, education or outreach, genetic testing, Hispanic or Latino, preclinical testing, secondary findings, Spanish language
Published Open-Access
yes
Recommended Citation
Fong, Jamie C; Chavez, Fatima I; Silos, Karla; et al., "The Words Community Dwelling, Spanish-Preferring Mexican/Mexican American Adults Use To Talk About Alzheimer’s Disease and Genetic Testing: Implications for Education and Outreach" (2026). Faculty, Staff and Students Publications. 7170.
https://digitalcommons.library.tmc.edu/baylor_docs/7170