Dementia care navigators help Latino Coloradans get the support they need

Latino Americans are 1.5 times more likely to develop Alzheimer’s disease, a type of dementia, than white Americans, according to the Alzheimer’s Association. In Colorado, nearly a quarter of the population identifies as Hispanic or Latino, and about 11,000 of the 91,000 Coloradans aged 65 and older living with Alzheimer’s disease are Latino. Dementia is a general term for conditions that affect memory, thinking, and daily functioning, with Alzheimer’s being the most common cause. Many Latino individuals and families face barriers to receiving timely diagnoses, medical treatments, and coordinated care, which can delay support and worsen outcomes. Nearly 9 in 10 Latinos also emphasize the importance of dementia care providers understanding their cultural backgrounds, as highlighted in a 2021 Alzheimer’s Association report.

Despite the need for culturally responsive care, studies show that dementia care often overlooks the unique perspectives and needs of Latino communities. A 2023 study found that reducing stigma around cognitive decline, promoting brain health to lower dementia risk, and acknowledging the impact on families are critical but frequently missed. Stigma refers to negative attitudes or shame associated with a condition, which can prevent people from seeking help. Latino caregivers often struggle to navigate the healthcare system due to barriers like a lack of interpreters or services in their preferred language or dialect. These challenges highlight the need for tailored, culturally sensitive approaches to dementia care that respect and incorporate Latino values and experiences.

In 2024, researchers at the University of Colorado Medicine convened eight Latino caregivers as research advisers to improve studies in dementia palliative care. This approach, called community-engaged research, involves including the voices of the people the research aims to help. Caregivers shared challenges such as difficulty accessing interpreters or culturally appropriate services. Their input helped shape the GUIDE program, a dementia care initiative launched in 2024 by the Centers for Medicare and Medicaid Services (CMS). The term palliative care refers to specialized medical care focused on improving quality of life for patients with serious illnesses and supporting their families. These advisers’ insights are now guiding the implementation of GUIDE programs in Colorado.

The GUIDE program is a Medicare initiative that provides trained dementia care navigators to Medicare beneficiaries living with dementia and their caregivers at no additional cost. Navigators assess needs, coordinate care across healthcare systems, and connect families with resources like dementia education and community support. The program also offers a comprehensive care plan from a dementia specialist, including medication reviews, and may provide respite care such as in-home care or adult daycare. Respite care gives caregivers temporary relief. In its first two years, the University of Colorado’s GUIDE program enrolled 200 patients and their caregivers, tracking their experiences to evaluate the program’s effectiveness. The goal is to address the stress and concerns faced by families dealing with dementia progression.

GUIDE programs in Colorado are adapting to better serve Latino communities. Insights from Latino caregivers led to hiring bilingual navigators and creating Spanish-language dementia resources. In 2024, the Colorado Department of Public Health and Environment launched the Talk About Dementia campaign, offering education and caregiver support materials in both English and Spanish. The campaign aims to reduce stigma and provide accessible information. There are currently four GUIDE programs in Colorado, serving areas like Grand Junction, Durango, Pueblo, and Denver. These efforts are part of a broader public health strategy to support the tens of thousands of Coloradans living with dementia and their families.