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Why more Latinos need to be involved in clinical trials for Alzheimer's disease

A MARTÍNEZ, HOST:

Latinos are 1 1/2 times more likely to develop Alzheimer's disease than non-Hispanic whites of the same age. Now, that's according to a report put out by the Alzheimer's Association in July. It made me remember the two choices facing my family when my grandpa was slipping into dementia, and they were looking for a facility to care for him. One was close by and had Spanish speakers on staff, but it was understaffed, and the upkeep left a lot to be desired. The other was fully staffed with pristine facilities but was far away, expensive, with hardly anyone that spoke Spanish. So my family decided to care for him at home for a grueling, painful decade until he passed away. It's a decision facing the families of many aging Latinos in the U.S. who are having a hard time finding medical and long-term care that is culturally inclusive. Mario Tapia founded the Latino Center on Aging in 1991. He says one key ingredient in culturally competent care is music.

MARIO TAPIA: That's the part that seniors enjoy the most. It's very surprising, you know, the reaction they have, especially when you play old-time music - you know, "La Bamba" and all of those.

MARTÍNEZ: I remember how my grandfather used to respond to music. He didn't say anything, but his demeanor changed when he heard music from when he was a kid growing up near Guayaquil in southern Ecuador. I spoke with Mario Tapia along with Maria Aranda, the executive director of the USC Edward R. Roybal Institute on Aging. And I started by asking just how prepared the United States is for the growth of the population of older Latinos.

TAPIA: Not at all. What's happening is they are experiencing very unusual growth. Just to give you a general statistics, a projection that we have from 1990, there was about 700,000 Hispanic 60-plus in the country, and right now it's 5 million. And that is going to be 22 million in 30 more years. So the country's not prepared. It seems like it's not being taken seriously.

MARTÍNEZ: And, Maria, as someone who specifically is trying to reach out to get Latinos involved in Alzheimer's clinical trials, does what Mario says track with you?

MARIA ARANDA: Yes. What Mario is saying is really on point. As a social worker and someone who has done research in the area of minority aging, what we have found in community-based settings is that the health care and social service or human service workforce is really ill-prepared to understand not only the preferences of the specific subgroup, but the very unique presenting problems that they bring to the fore.

MARTÍNEZ: Maria, what are some of those unique problems?

ARANDA: One unique problem is they come to agencies with a very low level of understanding of what medical conditions are, like dementia, Alzheimer's, etc. So people come to, for example, physicians with years of already having significant memory loss and not having a formal diagnosis regarding, you know, is this Alzheimer's? Is this some other condition that can be reversed?

MARTÍNEZ: Maria, when it comes to diagnosis, how important is it to have that explained in Spanish? Does it matter if something is explained in Spanish as opposed to in English?

ARANDA: Well, good medical care is based on good communication. But unfortunately, Latinos and Latino families many times go undiagnosed. For example, I conducted a study some years ago, and when we recruited Latino families into a dementia care program, we realized that many of them were not diagnosed by any physician, even living with the disease for between 4 and 5 years. And if you don't have access to specialists that can implement diagnostic guidelines in your language of preference, then you have a problem.

TAPIA: Well, one is language, and secondly is the fear of not knowing what to cook - like, the meals, you know? - that it has to be culturally relevant for a community to continue coming back. If you go to a center, and they serve you kielbasa and sauerkraut, people won't come back, and they tell their friends, don't go there because the food is not culturally relevant to us.

MARTÍNEZ: The Biden administration recently proposed new minimum standards for nursing home staffing. Mario, how should any changes also factor in a level of cultural competence?

TAPIA: Well, firstly, we want to develop awareness in elected officials and national organizations dealing with Alzheimer's and other dementias. We are not going to move this issue, especially with a private organization dealing with Alzheimer's. I have found that surprise in New York. For the national conference, I wanted to have someone working directly with the community, and they couldn't find - they didn't have any bilingual person there in New York. And secondly, like in South Florida, 70% of the population of Miami-Dade County is Hispanic, and 67% speak Spanish at home. Those are the statistics. But somehow, it's been pretty difficult - difficult even to print a bilingual resource guide.

MARTÍNEZ: Maria, what about you on that? If there are any changes to nursing home staffing, how much should they factor in a level of cultural competence?

ARANDA: Well, even before we get to cultural and linguistic competency, we have to understand that older Latinos, when they do go to a nursing home, they're more likely to go to nursing homes that have serious deficiencies in performance and quality. They are typically understaffed, and they provide poor care. So if the Biden administration is looking at this in attempting to increase the quality of care, they should start with those nursing homes that are in minority communities.

MARTÍNEZ: Maria Aranda is the executive director of the USC Edward R. Roybal Institute on Aging in Los Angeles. And Mario Tapia founded the Latino Center on Aging based in New York City. Mario, Maria, thank you very much for sharing this with us.

TAPIA: Thank you for inviting us.

ARANDA: Thank you.

(SOUNDBITE OF HERMANOS GUTIERREZ'S "LOS CHICOS TRISTES") Transcript provided by NPR, Copyright NPR.

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