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Dispelling Myths of Alzheimer’s Among Minority Communities

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Malcolm B. Dick is chief neuropsychologist at UC Irvine's Alzheimer's Disease Research Center

A Latino family gathered in Orange County at the end of last year, not to celebrate the holidays, but to discuss what to do about mom. For the past year they’ve noticed changes in her behavior that have gotten worse. For example, she repeatedly asks the same questions, is having trouble preparing meals and has gotten lost coming back from the local market where she has shopped for years.

Although the doctor said these changes are “normal” for an 85-year-old, the family suspects otherwise. Finally, one of the children asks, “Could this be Alzheimer’s disease?” They have all heard of it, but thought it only happens to elderly whites, such as former President Reagan or artist Norman Rockwell.

In fact, Alzheimer’s disease does not spare any ethnic group. Across cultures, 22% of people 75-85 and 48% of those older than 85 will develop it. In fact, African Americans and Latinos are more likely to develop Alzheimer’s disease than whites, with the risk being four times greater in African Americans and over twice as great in Latinos. The reason for this is probably a combination of factors related to genetics, education and general quality of health care.

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Alzheimer’s disease is already a significant health problem within the minority communities of Orange County, but often goes undiagnosed. Many minority families fail to recognize it, or attribute the symptoms to mental illness, retribution from God or other causes.

To increase recognition of the disease, the Orange County Chapter of the Alzheimer’s Assn. joined forces with the Institute for Brain Aging and Dementia at UC Irvine and representatives of various minority groups to develop a program. Typical marketing tools such as brochures and fliers have proven ineffective in reaching minority elders, many of whom have little formal education. A committee focused on developing strategies that could overcome the barriers created by culture, language, economic disadvantage and educational differences.

To succeed, the program shifted from a passive model, where professionals and agencies expect patients to seek assistance, to an active one, where bilingual staffers work in minority communities to identify and assist people needing help.

The first step is obtaining an accurate diagnosis, available through the UCI Institute for Brain Aging and Dementia.

A bilingual staff member from the Alzheimer’s Assn., who is sensitive to the cultural beliefs about dementia, and familiar with barriers such as cost and transportation to services, educates the family about diagnosis and provides reassurance. Often the staff member makes many contacts, builds trust, and walks the family through the diagnostic process. The same staff member then participates in the assessment, assisting the patient and family in completing paperwork while institute doctors perform the neurological, physical and cognitive testing in the patient’s native language.

Frequently, the same association staff member accompanies the patient and family to the hospital when additional tests, such as a brain scan, are requested by physicians. When results of the assessment are presented to the family, the association staff member can assist with translation or help link the family to services such as adult day care and in-home help. On average, the association staff member spends 10 hours with each family, at no cost. All of the services provided by the Alzheimer’s Assn. are free and Medicare pays 80% of the fees for diagnostic evaluation at UC Irvine.

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Currently, Alzheimer’s disease is incurable, but it is treatable. For example, new medications such as donepezil (Aricept) and the soon-to-be released rivastigmine (Exelon) have been shown to improve memory and other cognitive abilities in individuals with mild to moderately severe Alzheimer’s disease. The use of estrogen and vitamin E might help slow the progression of the disease, and treating depression and other behavioral problems, such as agitation and delusions, can improve quality of life significantly for patient and caregiver.

There is a misconception among some minorities that Alzheimer’s disease is part of aging. The Alzheimer’s Assn. is trying to raise awareness of treatment and emphasize the importance of early diagnosis. It also works at the local, state and national levels to advocate expanded research.

It is important to diagnose patients as soon as possible so a treatment can be recommended. The association telephone number is (714) 283-1111; the number for the multicultural outreach line is (714) 283-1984, Ext. 27.

Most important, by seeking help rather than dismissing the problem and hoping it will go away, minority families can improve their lives as well as those of their loved ones.

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