Alzheimer's Disease and Cultural Beliefs

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There are significant differences in awareness and beliefs about Alzheimer's disease among ethnic groups, and health education programs should be tailored to account for these different understandings, according to new research presented today at the first Alzheimer's Association International Conference on the Prevention of Dementia.

Three independent studies looked at African American, Latino and Hmong American communities to examine their beliefs about causes and preventions of Alzheimer's and to determine how their views were influenced by culture.

Significantly more people in the African American and Latino study groups identified stress as a significant risk factor for Alzheimer's when compared to Whites. In the Hmong American community, religious affiliation influenced the perceived cause of dementia in older people and a majority of caregivers viewed elder confusion as a normal part of aging.

"Alzheimer's impacts all ethnicities and, as these studies show, an effective outreach program must account for existing and meaningful cultural perceptions about this disease," said Peggye Dilworth-Anderson, Ph.D., Professor, Department of Health Policy and Administration, School of Public Health, University of North Carolina at Chapel Hill and a member of the Alzheimer's Association's Board of Directors. "Minority populations will see dramatic increases in Alzheimer's in their communities in the future so we need to act now to ensure that these communities are knowledgeable about the disease."

Beliefs about Alzheimer's among African Americans

J. Scott Roberts, Ph.D., of Boston University School of Medicine, and colleagues surveyed 312 participants to examine differences between African Americans and Whites regarding their beliefs about what may cause, prevent or treat Alzheimer's. Participants were largely middle aged and highly educated, with significant representation of African Americans, caregivers and relatives of people with Alzheimer's disease.

Compared to Whites, African Americans were more likely to report that factors such as stress, mental illness, God's will, alcohol abuse, smoking and exposure to toxins are important in the development of Alzheimer's. African Americans were also more likely to suggest that lowering stress levels, engaging in physical activity and eating a healthy diet are effective ways to prevent Alzheimer's. Both groups viewed genetics/heredity as the most important risk factor for Alzheimer's.

"These distinctions in beliefs about Alzheimer's may be important to keep in mind when designing health education and outreach programs for diverse audiences," said Roberts. "Research suggests that culturally tailored health education programs can be useful in raising awareness about health problems, but such programs need to be informed by continued investigation of the impact of race, ethnicity, and culture on perceptions of illness."

Genes or stress? Latino perceptions about Alzheimer's disease

In another study presented today at the Alzheimer's Association Prevention Conference, researchers led by Jason Karlawish, M.D., of University of Pennsylvania, compared beliefs about the causes of Alzheimer's among Latino and White caregivers.

Researchers in Philadelphia recruited 30 White caregivers and 30 Latino caregivers from the Puerto Rican community. They participated in an interview using a special technique, called "freelisting," that identifies the terms used to define a topic and also determines the level of shared knowledge in the cultural group about the topic.

Overall, Latinos and Whites have some mutual understanding about the causes of Alzheimer's disease in these areas: genes, trauma, nutrition, aging and brain deterioration. For both groups, "genes" was identified most frequently as the cause for Alzheimer's. However, Latinos had an entirely unique category of cause: mental illnesses or negative emotions that feature "stress." In fact, Latinos were more likely to mention "stress" and Whites more likely to mention "genes," "plaques," "lack of brain activity" and "environment."

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"Understanding people's perceptions about the causes of Alzheimer's disease is crucial," said Karlawish. "These views influence their opinions about how best to prevent and treat it, and whether to participate in research."

Dementia in the Hmong American community

A study led by Linda A. Gerdner, Ph.D., R.N. at the University of Minnesota School of Nursing looked at the perception and care of elders with dementia in the Hmong American Community. Members of this community arrived in the U.S. from Laos as refugees following the Vietnam War and constitute a growing population. Data was collected through interviews over a 2.5-year period. Participants included 16 Hmong Americans living in Minnesota and Wisconsin, including family caregivers, traditional healers and community liaisons.

The research findings suggest that religious affiliation (11 Animist/Ancestor worship, four Christian and one mixed) was associated with perceived cause of elder chronic confusion in the Hmong community. The majority of caregivers viewed elder confusion as a normal part of aging but they also sought treatment by a shaman (traditional healer) to satisfy the spiritual needs of the elder. Hmong shamans identified soul loss as the cause of dementia.

Traditionally, the eldest Hmong son has the primary responsibility for his aging parents, with his wife providing the actual hands on care. Caregiving in this community is seen as reciprocal of the love and care given by the elder generation and as being a model of traditional values for the younger generation. Admission to a long-term care facility was associated with stigma for both the elder and their family. The use of Western medicine was limited to emergency care of acute illness.

"The Hmong assisted the American effort during the Vietnam War, yet many people are uninformed about this ethnic minority," Gerdner said. "As a result, dementia and family caregiving in the Hmong community have been neglected areas of research. Our findings underscore the critical need to develop interventions and family caregiver training programs that are sensitive to the unique needs of the cultural group being served."

"People's perception of disease impacts how we talk to them, assess and diagnose them, treat them, recruit them for research trials, and get them involved in the Alzheimer's community," Dilworth-Anderson said. "Studies like these three help the development and dissemination of culturally appropriate materials so we can broaden the community we reach with information, support, services and research."

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About the Alzheimer's Association

The Alzheimer's Association offers a wide variety of educational resources for non-English speaking audiences, including a Spanish language Web site. The Association's 24 hour/7 day nationwide Contact Center features more than 140 languages and dialects 1.800.272.3900). Outreach efforts and partnerships with the National Council of La Raza and the National Urban League deliver culturally appropriate information, education and referral services.

The Alzheimer's Association, the world leader in Alzheimer research and support, is the first and largest voluntary health organization dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer's. For 25 years, the donor-supported, not-for-profit Alzheimer's Association has provided reliable information and care consultation; created supportive services for families; increased funding for dementia research; and influenced public policy changes. Washington, D.C.

The Alzheimer's Association's vision is a world without Alzheimer's and its dual mission is to eliminate Alzheimer's disease through the advancement of research and to enhance care and support for individuals, their families and caregivers. For more information, visit http://www.alz.org

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