Alzheimer's disease is still a mystery to people of different races and a large percentage of people across the board are unaware that treatments are available to reduce symptoms.
This is one of the surprising findings in a national survey, "Public opinion about Alzheimer's disease among Blacks, Hispanics, and Whites," which was analyzed by researchers at the University of Michigan School of Public Health. Understanding racial and ethnic influences on knowledge and beliefs about Alzheimer's is critical to communicating risk reduction strategies, symptom recognition, diagnosis and illness management, the paper said.
There were more similarities in patterns of response among the racial groups than expected, said Cathleen Connell, professor in the U-M School of Public Health and director of the Education and Information Transfer Core of the Michigan Alzheimer's Disease Research Center. One half of the sample reported that nothing can be done to maintain cognitive functioning and reduce Alzheimer's risk. Similarly, less than half of the sample was aware that treatments can address symptoms and improve quality of life. There were no significant differences among races in the level of concern about getting Alzheimer's disease.
However, some notable differences among blacks, whites and Hispanics were discovered, Connell said. Many more blacks and Hispanics than whites responded that they believe that Alzheimer's is a normal part of aging.
"If family members believe that Alzheimer's disease is the term for normal memory loss associated with aging, they will be less likely to seek diagnosis and treatment in the early phase of the process when more options are available," Connell said. "To the extent that non-whites are much more likely than whites to normalize symptoms of dementia, we need to do a much better job of tailoring messages in an effort to increase public awareness about the disease."
Blacks and Hispanics were much more hopeful than whites about research advances toward a cure, which may reflect a hopeful outlook "related to spirituality and religiosity, both of which play a significant role in health decision making," the paper said. In keeping with this higher level of optimism, blacks and Hispanics were more likely to report changing their diet or lifestyle to avoid developing Alzheimer's disease than whites.
Hispanics reported feeling more well-prepared for handling a diagnosis of Alzheimer's in the family than blacks or whites. But overall, only one fourth of respondents reported feeling prepared for such a diagnosis in the family.
Researchers gave 1,776 black, Hispanic and white adults brief phone interviews to assess their levels of knowledge and beliefs about the disease; their concern about getting other prevalent chronic diseases; and whether they reported any lifestyle changes to reduce the risk of disease.
"Although knowledge about Alzheimer's disease has increased dramatically over the past two decades, misconceptions remain among large segments of the population," Connell said. "Continued efforts are clearly needed to educate the public about the disease."
Further studies are needed to better interpret the survey findings, but they will likely need to be in-depth qualitative studies. However, a large percentage of the overall sample responded in ways that suggested a need for more outreach and education, independent of race.
Connell is associate director for the Center for Managing Chronic Disease, and lead author of the study, which appears in the September issue of the journal Alzheimer Disease and Associated Disorders. Co-authors include J. Scott Roberts, assistant professor in the School of Public Health, and Sara McLaughlin, doctoral candidate in the School of Public Health.
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