Reaching Out to a Disease’s Forgotten Ones

Laura Trejo grew up in Huntington Park--one of several Latino communities in metropolitan Los Angeles in which a study a few years ago asked residents where they would seek help for a loved one with memory problems. The study found that far more often people said they would call information rather than call the family doctor.

So when Trejo--who had been working with the elderly--was asked by Los Angeles Alzheimer’s Assn.’s Peter Braun to volunteer, she wanted to know whether the organization would commit to helping those in underserved communities--like hers. It would.

Trejo became a volunteer and in 1992 was instrumental in creating the association’s El Portal program--a collection of services that range from handout materials to support groups to an information hotline for Latino Alzheimer’s patients and their families. El Portal is now recognized internationally as a model program.

And that international attention has kept Trejo--whose formal title is the Older Adults Services coordinator for Los Angeles County’s Department of Mental Health--busy over the last six years, traveling periodically to El Salvador and Guatemala to work with medical personnel, social workers and families there to help set up similar programs.

Using her vacation to help in El Salvador is especially satisfying for her, she said, because she was born there, although she was raised in the United States.

“It’s very rewarding, very fulfilling to know that a person can come here, get an education and make a difference,” said Trejo, 40. “I always feel that connection--the need to give back something of what I’ve gotten here.”

“I think what is of significance is that she’s made a passionate commitment to the work of Alzheimer’s and the need to serve all those suffering throughout Los Angeles . . . in geographically and ethnically underserved areas,” Braun said. “This is really her passion. She devotes enormous hours.”

El Portal began to take shape in the early 1990s when the federal government found that Latinos suffering from Alzheimer’s were underserved throughout the country. The government gave a $500,000 grant to the L.A. association to create programs.

Over the years El Portal has evolved to provide families with information that helps them recognize the disease, adult day-care centers, even a Mother’s Day luncheon to give family caregivers a break from the hard work of caring for someone with Alzheimer’s.

“We did a study . . . and people would say if they had a loved one with a memory problem, they would go to the police. They would go to missing persons,” Trejo said. “They came up with everything except that they would take him to a family doctor. That tells you that even Latinos born here and who speak English don’t have access to the care that some of us take for granted.”

*

Even now when people reach El Portal they often have been taking care of family members for several years without a proper diagnosis and professional help, Trejo said.

“My grandmother had major memory problems 20, 30 years ago. I think now in retrospect that she probably had some kind of dementia, but it was never diagnosed,” Trejo said.

Elements of El Portal are now being tailored for other ethnic groups in Los Angeles, such as Pacific Islanders, who have different language and cultural needs, Trejo said.

Trejo no longer directs the El Portal program but remains active in the Alzheimer’s group. Still, it is El Portal that has allowed her and the organization to spread its name in other countries. In March, Trejo will speak at the third annual meeting of the Latin America Alzheimer’s Assn. in Havana. And in July she will speak in Washington, D.C., at the World Alzheimer’s Congress.

Back when word of El Portal was just getting around, there were calls of interest from such disparate areas as the East Coast and Central America.

One caller was Hayde Lopez from Guatemala City, whose mother had Alzheimer’s. There were no support groups there so she wanted to establish an association--with Trejo’s help.

“She said, ‘I don’t want to be alone anymore,’ ” Trejo remembers. As a result of that contact, Trejo started visiting Central America in 1992 to help people in all stages of dealing with the disease, from recognizing symptoms to making homes safe for those with dementia.

*

With Trejo’s guidance, Lopez has established Ermita, an Alzheimer’s association that has contact with 300 families throughout Guatemala City. Trejo plans her next visit there in the fall.

“It’s very exciting because all of the work related back to the experience here in Los Angeles and the fact that we have developed materials, we have developed programs,” Trejo says.

Trejo says some of the personal payoff comes from being recognized in the Latino communities here as an advocate for Alzheimer’s patients and their families.

“I love it that I can go into a grocery store in my community and have somebody look at me and they go, ‘Didn’t I see you at that education meeting at this agency?’ and I can say, ‘Yes, that’s me,’ ” Trejo says. “You can’t pay for that.”

* To reach the El Portal hotline, call (800) 633-5767.

* Jose Cardenas can be reached at jose.cardenas@latimes.com.