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Making connections

Alzheimer’s research project needs Latinos to make strides

It may not happen in her lifetime, but archivist Christine Marin is instrumental in finding a cure for an illness that is estimated to strike more than a million elderly Hispanics by 2050.

The Arizona State University curator is a volunteer participant in the extensive Alzheimer’s Research Program at Banner Good Samaritan Medical Center in Phoenix. The project aims to confirm susceptibility to the disease and to help establish prevention therapy.

As a Latina, Marin is particularly helpful, since existing data regarding Alzheimer’s and its impact on the Hispanic population pales in comparison to that which relates to Anglos.

"It is very important for individuals to become involved and take control of their own health so that years from now, there would be a cure," she says.

In January, Marin’s mother died from complications stemming from Alzheimer’s. Her voice cracks and is stifled by emotion when talking about behavior changes that signaled it was more than age or senility that took hold. Dementia was just the beginning of a five-year battle that ended at the age of 86.

By that time, Marin’s mother could say words but not complete sentences, and needed help with daily needs. She did not remember the identity of friends and she could not remember family members’ names, although she knew who they were. The passion for writing in her daily journal, gardening and reading autobiographies were joys the disease would not allow her to experience.

Not knowing anything about Alzheimer’s, Marin researched the illness and shared any information she came across with her father and five siblings.

Educating Latinos about the disease is a task Dr. Al Kaszniak knows well. Head of the psychology department at the University of Arizona, Kaszniak is also the community outreach and education specialist with the research project.

FOCUSING ON LATINOS

Historically, the Hispanic community has not received the diagnosis and treatment afforded to other populations, leading to a lack of education about the disease. Kaszniak hopes to change that with the help of Latino volunteer subjects like Marin, and English and Spanish versions of informational literature that explain the symptoms and what to expect when getting a diagnosis.

"To get a better idea, it is better to early diagnose the illness. If we could detect who is at risk, who is likely to develop it, it could give us the opportunity to prevent it," he says.

The Banner Alzheimer’s program has studied healthy volunteers for 10 years. Executive Director Dr. Eric Reiman explains the work is a key step in creating a pinnacle of Alzheimer’s research, drawing people from all over the world to the Valley for effective prevention therapy and treatment. A conscious effort has been made over the last three years to study the disease’s connection to the Hispanic community.

"We can be in a position to demonstrate what are risk factors in the Latino population. Some treatments may not work equally well. We have the opportunity to demonstrate the effectiveness of prevention therapy," Reiman says, referring to patterns that have been proven to put certain ethnic groups at greater risks than others.

And getting more Latinos to volunteer for the project is a necessary step.

"For Anglos, we know genetic risks and we know those genes occur in Latinos, but don’t know if it carries identical risks," Kaszniak says.

"It is a brain disease that is not something people bring on themselves, (and) not something that ought… to be an embarrassment. It strikes people of every group."

If you are interested in being a Latino volunteer for the study and are healthy and between the ages of 47-68, call (602) 239-3699.