About 6.8 million people in the United States have Alzheimer’s disease, a disease characterized by memory, language, and thinking problems caused by damage to nerve cells in the brain. The most common cause of dementia, Alzheimer’s disease, is on the rise in women and minorities. Although the majority of those with Alzheimer’s disease are white, according to the CDC, Latinx Americans are expected to experience a sevenfold increase in Alzheimer’s by 2060, the steepest increase among those at risk. Furthermore, despite their increased risk, Latinx and Black patients are less likely to be diagnosed with the disease.

When Perla Castro’s mother began to show symptoms of Alzheimer’s disease in her mid-50s, Castro and her family were frustrated by the challenges they experienced during what wound up being a 20-year battle with the disease. “We didn’t even know what we were dealing with at first,” recalls Castro, a project manager. “My mother was so young. They were telling us it was stress, it was headaches, it was depression, she was overwhelmed–maybe it was something with her hormones.” Unable to get answers from the physicians they saw in the US, the family finally sought care in Guatemala, where one doctor suggested the cause for her symptoms might be Alzheimer’s disease. When they returned to the US, they advocated for their mother to be seen at a neurological clinic.

Desperate to find answers and resources in Spanish and discouraged by how little she could unearth, Castro founded Latino Alzheimer’s Coalition for Advocacy, Research and Education (LA CARE), a group of academic and community partners dedicated to empowering individuals with or at risk of Alzheimer’s disease and their families to obtain greater access to education, family support services, and research opportunities.

“There are more and more Latinos in the United States, and more of them are aging,” says David Xavier Marquez, LA CARE board member and a professor of kinesiology and nutrition at the University of Illinois Chicago who does research on aging, exercise, and brain health. “But that doesn’t entirely explain the high incidence of Alzheimer’s disease among Latinos. A lot of it comes down to the social determinants of health: lower levels of education, lower levels of access to health care. There are also links between cardiovascular disease like hypertension and Alzheimer’s, and we know those chronic diseases are higher amongst Latinos.”

Stigma is also part of the challenge for those seeking care and information. “We don’t talk about it,” says Castro. “We minimize it, or people don’t feel comfortable speaking of it. People need to understand that this is a disorder. It’s not a normal part of aging.”

The absence of a cure for Alzheimer’s can make facing or talking about the disease especially intimidating. Yet there are treatments that can slow the progression of the disease or help manage symptoms, including medications and therapies. “New FDA-approved drugs have come out in recent years,” says Marquez, although he notes that the small proportion of Latinx and Black participants in drug trials is problematic. “We can’t cure Alzheimer’s, but we can at least slow it down.”

In addition to learning how to treat symptoms, family members may also need support planning for the long-term care of their loved one. “There’s a lot of stress on caregivers,” says Castro. “People have to juggle priorities within their families, and the financial impact is expensive.

There’s not a lot of services out there to help families. For those who decide to have their loved one in a facility, there’s not a lot of facilities that are equipped to take care of Alzheimer’s patients in Spanish–I know one.”

To address these needs, LA CARE hosts a directory of services, including medical, community, education, legal, financial, and research resources that offer Spanish language services. Among the resources in development is an artificial intelligence chatbot, AI-PROMOTORA (Providing Resources and Outreach to Middle-aged Older adults Through Online and Realistic Agents), a project under development by C3EN Pilot Awardee Mohan Zalake, a research assistant professor of Biomedical and Health Information Sciences at UIC.

Zalake, a computer scientist who develops technology to improve population health with a focus on stigmatized diseases, first encountered Marquez’s work on Alzheimer’s disease and Latinx communities in a poster session and began to brainstorm about ways that his technology could help. Zalake and his team spent six months listening to the personal stories of Latinx community members and caregivers to develop an AI- based digital twin, a digitally synthesized person, who can communicate information about Alzheimer’s disease.

“We use a digitally synthesized voice and digitally synthesized faces so that people can actually relate to the person that they’re talking to and receive the information in a given language,” explains Zalake. “Right now we are doing this in English, but our long-term goal is to have this in different languages. The idea is that by having this conversation interface we can have these stigmatized conversations freely.” Zalake, who is also working with Marquez on a brain donation resource for the Latinx community, is working with translators and native speakers on his team to develop culturally appropriate communication.

As the project develops, Zalake envisions linking AI-PROMOTORA with the LA CARE directory. “In our current discussions, we are seeing questions like, ‘Where can I get financial support?’ ‘Where can I get emotional support?’ LA CARE has been very helpful in providing those specific resources, which we’ll be adding to the conversation.”

“What I like about working with artificial intelligence is being able to provide some information in a creative way,” says Castro. “There’s not a lot of services, support groups, or activities.There’s not enough research out there and not enough participation for Latinos in research. We want to change that–we want to continue to advocate for more research and continue to nudge the community to participate in research. We continue to advocate for more services in Spanish that are culturally sensitive to Latinos. If there are other partners out there that would like to work with us, we’re here, and we’re open.”