Project Summary Abstract
Researchers estimate an 832 percent growth in the number of Latinos with AD from 379,000 in 2012 to 3.5
million by 2060. While families frequently support the communication in people with Alzheimer’s Disease and
Alzheimer’s Disease Related Dementias (AD/ADRD), language differences can create particularly complex
situations for caregivers who must navigate a dominant English-language system for a family member who has
reverted to their first language. This issue is particularly acute for Latinos, given that the majority are bilingual,
and many families are (and will be) affected by complex caregiving needs. Frequently, the translation of materials
serves to promote service access for linguistically diverse groups. But to reflect underlying cultural nuances and
to identify the best secular phrasing and/or idiomatic expression in the target language, constructing valid
measures requires more than mere translation. Moreover, because language is communal, it is closely tied to
identity formation and acculturation, which can affect people’s social network formations and reinforce language
skills. Arguably, analyses of valid measures should also consider how the social (linguistic) context might
influence responses.
We propose to enrich the National Social Life, Health, and Aging Project (NSHAP), a longitudinal study of
older adults focused on social relationships, physical and mental health, cognitive, sensory, and motor function,
and medication use. NSHAP oversampled Latinos, collected data in English and Spanish, and interviewed
respondents in four rounds (2005-06, 2010-11, 2015-16 and 2021-22). However, these data have rarely been
used to study Latino older adults’ health and social lives. No research has been conducted that compares the
social networks of English- and Spanish-speaking Latinos and we know nothing about caregiving within these
networks. NSHAP lacks questions on language usage in daily life and contains few questions on how language
and cultural characteristics might impede access to health and other important institutions. To contextualize
aging and family caregiving of AD/ADRD among Spanish- and English-speaking Latino older adults we aim to
augment the NSHAP social network roster and caregiving questions, improve NSHAP Spanish-language
measures of caregiving and social networks, and administer the enhanced NSHAP protocols to Latino AD/ADRD
caregivers in Spanish and English.
