Dementia care navigators help Coloradans get the support they need

Latino Americans are 1.5 times more likely to develop Alzheimer’s disease than white Americans, according to the Alzheimer’s Association.

In Colorado, nearly a quarter of the overall population identifies as Hispanic or Latino. As Coloradans age, more individuals and families in these communities will be affected by dementia.

Today approximately 11,000 of the 91,000 Coloradans ages 65 years and older who live with Alzheimer’s disease are Latino. Many face barriers to timely diagnoses, medical treatments and coordination of care.

Nearly 9 in 10 Latinos say it is important for dementia care providers to understand their cultural backgrounds, according to an Alzheimer’s Association 2021 report. Two years later, another study found that dementia care often misses or overlooks unique perspectives and needs of Latinos. The study described the importance of reducing stigma about cognitive decline, helping people care for their brains to decrease dementia risk and acknowledging the impacts dementia has on families and households.

As a geriatrician, palliative care physician and researcher in dementia care and caregiving, my work focuses on improving dementia care across cultural backgrounds, including in Latino communities.

I am also the founding medical director of the University of Colorado Medicine GUIDE Program. GUIDE stands for Guiding an Improved Dementia Experience and is a new Medicare program that provides a trained dementia care navigator to individuals affected by dementia.

‘Nothing about us without us’

In 2024, my research team convened eight Latino caregivers as research advisers to help improve studies in dementia palliative care.

This is an example of community-engaged research, the practice of including in the research process the perspectives of the individuals and communities that research aims to help. Individuals who are part of such studies often describe it this way: “nothing about us without us.”

Palliative care for dementia is designed to help patients understand how the illness progresses and what decisions they need to make. It also focuses on how to improve the patients’ quality of life and support caregivers at each stage of the disease.

We asked the caregivers who joined meetings to provide input on how we might conduct a hospital-based palliative care study so that it would better address the cultural needs of older Latinos with advanced dementia.

The advisers described to us the challenges they faced navigating the healthcare system, especially related to a lack of interpreters or services in their preferred language or dialect.

Their insights emphasized the need for tailored, culturally responsive dementia care. Findings from this study are helping our team implement the GUIDE program in Colorado.

The GUIDE model

Launched in 2024 by the Centers for Medicare and Medicaid Services, the GUIDE model provides care and support for Medicare beneficiaries living with dementia as well as their caregivers.

There are currently 292 GUIDE programs across the U.S., including four based in Colorado. The Colorado programs serve areas that include the cities of Grand Junction, Durango, Pueblo and Denver.

The program aims to address the overwhelming stress and concern people living with dementia and their caregivers have due to progression of the disease.

Dementia limits a person’s ability to live and function independently. It affects people’s ability to make decisions on issues such as money and safe driving. Dementia can also cause behavioral symptoms such as confusion, apathy, personality changes, anxiety and depression.

The GUIDE model connects eligible Medicare parts A and B beneficiaries who have dementia, and a caregiver if one is involved, with a trained dementia care navigator at no additional cost.

That navigator works to understand their needs and challenges, and then provides tailored recommendations. These recommendations often include resources for dementia education, advice on how to coordinate care across healthcare systems and information about community resources.

The GUIDE program also provides a comprehensive assessment and care plan from a dementia specialist, including a medication review. If eligible, patients and caregivers can also receive respite care, such as in-home care, adult daycare or facility-based care.

In the first two years of our team’s GUIDE program at the University of Colorado, we have enrolled 200 patients who have a dementia diagnosis and their caregivers. We are tracking how the program is working, including their perspectives on quality of care and levels of caregiver strain.

Moving forward

Public health agencies, community organizations and GUIDE programs are working together to help the tens of thousands of Coloradans with dementia and their families find services and support.

One outcome is the Colorado dementia GUIDE model map, which helps families and caregivers find a GUIDE program.

GUIDE programs in Colorado are also working to incorporate the specific needs of Latino communities. Insights from Latino caregivers encouraged us to hire bilingual dementia care navigators and include Spanish-language dementia resources. In 2024, the Colorado Department of Public Health and Environment launched the Talk About Dementia campaign, which included education and resources for caregiver support in English and Spanish.

Colorado’s GUIDE programs are contributing to the national effort to study how dementia care navigation can best help patients and families living with dementia.

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