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Study looks at caregiving among Florida's minority populations

August 25, 2008


MIAMI - In the United States, someone develops Alzheimer's disease every 72 seconds.

Someone, too, must rearrange their life to become a caregiver. A daughter must be there to remind her mother who her grandchilden are. A husband to brush his wife's teeth. A grown child to keep a parent from turning on the stove.

"It is the most terrible thing in the world to have someone go through," said Iraida Garcia, 55, of Kendall, Fla., who takes care of her 79-year-old mother, Irma. "The body is there but the mind and the memory are not. You sit and you look at them and talk to them. And there is no connection. And as selfish as it may sound ... it's really hard on me."

While the consequence of caregiving has been a trendy subject among sociologists, very few have studied the impact on Hispanic, African-American and Haitian-American caregivers in South Florida.

Until now.

The University of Miami's Center on Aging is rolling out a two-year project that will evaluate the toll of taking care of a loved one on nearly 200 caregivers of color in South Florida. Nationwide, 9.8 million people provided unpaid care for someone with the disease in 2007, according to the Alzheimer's Association.

"People don't plan on becoming caregivers," said Dr. Sara Czaja, co-director of the center and principal investigator on the project. "It's something that just happens to them. It's not one size fits all. Culturally, we have different ideas about family, about caregiving - maybe technology can play a big role."

MAKING A CONNECTION

Part of the program involves connecting caregivers to others through video phones installed in their home. Through their video monitors, they can reach out to other caregivers, social workers or medical experts and watch pre-recorded videos about caregiving and Alzheimer's.

"I've never been able to get out to a support group," said Celestine McCrea, 63. McCrea spent much of the last 10 years taking care of her mother, Leona Cooper, who passed away in July at 87. "I never left my mother alone."

In her years of caretaking, McCrea had read a lot of literature on the disease but didn't know many other caretakers until she started attending the tele-support groups from her home.

"I've never met them," McCrea said. "But I do feel like I know them. I knew other people went through this, but I had no idea how much so."

McCrea, an only child, moved her mother from South Carolina to her Miami Gardens, Fla., home after she had her first heart attack in 1998. Five years later, "she started acting a little differently."

It was Alzheimer's, the mind-destroying illness that robs people of their memory, their personality, their perceptions of reality. While there is no cure, a new experimental drug is showing promise in halting the progression of the disease, according to research presented last month at an Alzheimer's medical conference.

For McCrea, the next five years were consumed by doctors' appointments, pharmacy runs and worry over her mother's erratic behavior.

"She went through quite a few stages," McCrea said. "She was very violent, she would throw things at me. She would try to leave the home. She would just start walking. Then I'd find her and she'd say I wasn't her daughter."

Her mother broke her shoulder, had several more heart attacks and eventually stopped walking.

"Caregiving is socially isolating," Czaja said.

McCrea, a retired great-grandmother, gave up much of her life. "I used to be very active in my church, singing in the choir, volunteering. I have not attended church in 10 years."

Struggling with her own health problems - diabetes and vision loss - she started experiencing anxiety attacks.

"The first one I had, I was in the emergency room and all I could think about was who was going to take care of my mother," she said.

This is common behavior, says Dina Caceres, a therapist at University of Miami's Center on Aging.

"Caregiving is like a full-time job. If you have a conversation with them, they don't talk about how they are. And what we keep seeing is one person who's sick taking care of another person who is sick."

Raul Pere, 78, has been taking care of his wife of 54 years, Reinaida, since she started displaying symptoms of Alzheimer's eight years ago. He suffers from diabetes and gout and now, depression. Part of the study group, the Northwest Dade man says his depression reached such levels that his doctors put him on anti-depressants, which he says are working. A 2002 study in The Journal of the American Medical Association found one-third of Alzheimer's caregivers have symptoms of depression.

A little over a month ago, Pere had the video hooked up in his house. "There are people who have support systems built in. But for me, it's just me and my wife. So this is good. I can get therapy without even leaving my house."

With Americans living longer, 7.7 million are projected to contract Alzheimer's by 2030 - double today's rates. That is expected to create a physical, emotional and financial strain on caregivers, as 70 percent of people with Alzheimer's live at home, according to the Alzheimer's Association. A 2003 study by The New England Journal of Medicine found that 72 percent of family caregivers said they experienced relief when the person they were caring for died.

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WHAT'S EXPECTED

For McCrea, relief is the farthest thing from her mind.

"For 10 years my mother has been my life," she said. "I don't know what to do now."

For Garcia, caring for her mother is what she always expected.

In Venezuela, where her family is from, children, often daughters, usually take care of their parents in their old age. Garcia has five brothers who live in Venezuela. Garcia, who is divorced, lives with her mother, her daughter, her son-in-law and two grandchildren in a Kendall, Fla., apartment. Her mother's illness is in the early stages.

"She's still OK," she said. "She remembers things that happened 45 years ago, just not five minutes ago. I can leave her alone. It will get harder as she gets worse."

For Pere, he worries his wife may outlive him. "It's because I'm taking such good care of her - not as good as I'm taking care of myself."


McClatchy-Tribune Information Services