New research shows
Alzheimer’s disease research recruitment, treatments, public
education
must account for cultural beliefs
June 19, 2005--Washington,
D.C. –
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.”
“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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