Language barriers may complicate caregiving for Latino families affected by dementia. 

The number of U.S. residents who speak a language other than English at home has nearly tripled since 1980, with Spanish speakers accounting for the largest increase. Yet we know remarkably little about how language shapes aging and caregiving experiences—especially in Latino families confronting dementia. This gap limits the nation’s ability to build effective, responsive support for millions of caregivers who shoulder intensive care in multigenerational households. 

NORC developed a novel instrument to map the caregiving networks of Latino families affected by dementia.

NORC partnered with the University of Illinois Urbana-Champaign (UIUC) to create the Caregiver Network Measure (CNM), an innovative tool that reveals how caregiving relationships are structured and how they shape support or cause strain for their caregivers. The CNM identifies care recipients, care helpers, personal helpers, and care disruptors—mapping the task- and role-based ties that define caregiving dynamics. These dynamics are shaped by interactions within the caregiver network, so the tool accounts for the fact that caregivers may themselves need care and that those assisting with care are not always helpful, sometimes introducing strain and disrupting care. Individuals within a network can also hold multiple roles. The project incorporated broadly accessible prompts and measures of language proficiency and community language use to reflect the lived experiences of bilingual caregivers. This approach is especially valuable for understanding Latino families navigating dementia care, where English as a second language speakers often revert to Spanish, creating challenges in an English language dominant health care system. 

Guided by a Community Advisory Board of Latino older adults, the team refined the CNM through cognitive interviews with English- and Spanish-speaking older adults and pilot-tested it with local community-dwelling caregivers to ensure comparability across groups. The instrument was then deployed with NORC’s AmeriSpeak Latino panel (N = 820).

Pilot findings reveal unexpected diversity in how Latino families organize dementia care.

Deployment with NORC’s AmeriSpeak Latino Panel revealed striking variation in how Latino caregivers organize support. While many arrangements were family-based, a substantial share involved mixed or non-kin networks, which expanded available help but often introduced coordination challenges. The findings also confirmed that caregivers frequently need care themselves and that those offering help can sometimes create strain—insights that traditional dyadic models of caregiving tend to overlook.

Available in both English and Spanish, the CNM provides an empirical foundation for future research and for developing services that better reflect caregivers’ lived realities. The measure can be embedded into the National Social Life, Health, & Aging Project and other studies of aging and caregiving.