Oralia Tapia noticed a change in her mother five years ago--the forgetfulness, the folding of the laundry in the middle of the night, the feeling that she was not where she was supposed to be--but didn't know how to begin to care for her.
A doctor said the only problem with Tapia's 85-year-old mother, Isabel Martinez, was her age. Five other health-care agencies also offered little help. Finally, she found a state-run facility with bilingual gerontologists and doctors where her mother was diagnosed as suffering from Alzheimer's disease.
In an effort to save families from similar runarounds, the federal government last week launched El Portal, a three-year, $1.5-million project to increase awareness of the disease among Latinos in Bell Gardens and East Los Angeles, and coordinate services for their families. Latinos are being targeted because many families, due to language barriers or a cultural tendency to care for their own without outside help, are not getting the assistance they need, project director Laura Trejo said.
"What I have experienced in working with family care-givers is that there is great despair," she said. "When I speak to an audience, there is always someone who cries because they've been taking care of their mother or father for 10 years all by themselves and they didn't know that other people have this problem too."
Tapia and her mother received help from the USC / St. Barnabas Alzheimer's Disease Diagnostic and Treatment Center and AltaMed Health Services Corp. in East Los Angeles.
"It's very difficult to care for her and very difficult to see her this way, and I know it's very difficult for a lot of other people," Tapia said after a news conference announcing the project. The El Sereno woman has become an advocate for increased care for Latino families and has spoken to the Assembly and other government officials.
An estimated 150,000 people in Los Angeles County suffer from Alzheimer's disease, according to the Alzheimer's Assn. Of that number, 60,000 are Latinos.
El Portal, which means "entrance," consists of 17 public and private agencies that work together to help Alzheimer's and dementia patients--and their families--in East Los Angeles and Bell Gardens.
The project has a toll-free telephone number for bilingual information about doctors, support groups, and places that offer respite and day-care services with bilingual workers. AltaMed, Human Services Assn. in Bell Gardens, Bet Tzedek Legal Services and the Los Angeles Caregiver Resource Center have been contracted with to provide local services.
El Portal has already won the interest of health-care organizations in other states and could become a model for the nation, said Jim Howard of the state Department of Health Services.
Some patients suffering from dementia can be helped with medication, or they may have a brain tumor that needs to be treated, said project coordinator Rosa Ramirez. The medical treatment can also become important for the mental well-being of the families, she said.
"They need to know that it's an illness, not that the person is being difficult or stubborn. One of our goals is to educate them," Ramirez said.
Another aim of the project is to train more bilingual staff members in the problems of this disease, Trejo said.
"Once they know this information, they will be accessible as professionals and as human beings in the Latino community," she said. "You cannot walk away from a family suffering from this and not become an advocate. The families will understand that we are available to them and they are no longer alone."
Details: (800) 63-EL PORTAL. (633-576-7825)