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Hispanic Families Struggle to Keep Relatives Close Despite Alzheimer's

By Yesenia Mojarro, The Ledger

March 15, 2005

 
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Julia Morales, 78, used to be gentle, social and active -- until she was diagnosed with Alzheimer's in 2002. 

She loved reading and writing poetry. She enjoyed singing and dancing to Latin rhythms. Visiting family topped her list on weekends. 

So much has changed in less than three years, said her daughter, Miriam Monge of Lakeland, recalling public embarrassments she has experienced since her mother was diagnosed with the disease.

"She accused my husband of stealing her money at the checkout line and has embarrassed him publicly on many occasions," Monge said. "She has also wandered from home while I was at work and beat him with her purse in the middle of the road when he tried to lead her back," Monge added.

Still, Monge restrained herself from sending her mother to a home for the elderly or an assisted-living center as long as she could.

The situation worsened. The strong cultural value of family responsibility in the Hispanic community results in family members caring for relatives with Alzheimer's for longer periods of time than caregivers in other communities and in families caring for relatives suffering from higher levels of impairment, according to a report released last year by the Alzheimer's Association.

The report, titled "Alzheimer's Disease among the Hispanic Population," states Alzheimer's disease and related dementias are projected to increase more than six-fold among Hispanics in the United States during the first half of the 21st century. The increase will result in 1.3 million Hispanics with Alzheimer's disease by 2050, compared with fewer than 200,000 currently living with the disease. Causes vary from a lower use of medical services among Hispanics to a high presence of risk factors such as diabetes and vascular diseases.

Nancy Parente, bilingual senior program specialist for the Florida Gulf Coast Chapter of the Alzheimer's Association, affirms the number of Hispanics suffering from Alzheimer's is underestimated.

"In many cases it's being undetected and unreported," Parente said. "Many of the people I've worked with think mom or dad are just forgetting things because of their old age and aren't going to the doctor."

Cultural issues, such as the expected responsibility of family members to care for elderly relatives and lack of health insurance, are also to blame, Parente said.

Hispanics are more likely to be uninsured than any other ethnic group in the United States. About 60 percent have gone without health insurance at some point since 2002, according to a study by Families USA, a national nonprofit, non-partisan organization dedicated to the achievement of high-quality, affordable health care for all Americans.

Not all these difficulties apply to Morales. Monge is a nurse and is knowledgeable about the disease. Health insurance is not a problem for her either. However, her mother, Morales, is a diabetic with heart problems, and Monge feels a responsibility to care for her mother. Morales birthed three children, but Monge said she is the closest to her mother.

"Mom has a rocky relationship with my sister, and my brother died recently. I am all she has," Monge said, her eyes tearing up.

Morales moved to Wedgewood Healthcare Center in Lakeland, a nursing home facility, a year ago.

All Monge's plans revolve around her mother.

"I visit her before or after work five days a week," Monge said. "I feel guilty if I don't."

That is the case with many caregivers whose health deteriorates after taking the responsibility of caring for a loved one with Alzheimer's, said Larry Powell of the Florida Gulf Coast Chapter of the Alzheimer's Association.

"They can get so stressed out, needing more than a 24-hour workday," Powell said. "Yet they still don't seek help."

Of all the people who attend support groups in Polk County, none are Hispanic, Powell said. Parente said she also has trouble drawing Hispanics to the support groups.

"Now I do home visits as opposed to having them come to my office," she said. "They don't like to share information about their family problems with others. It's a very private thing."

Monge, who has never visited a support group, agreed.

"I don't need the help, Mom does," she said.



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