Bridging the Gap
By Alice
Dembner,
Boston
Globe
July 23,
2007
Dementia has struck hard in Maritza Ciliberto's family.
First, it was her grandmother. And then her mother, diagnosed even though
she is just 61.
One relative said the family, rooted in Puerto Rico, is
cursed -- reflecting a common misconception among some in the Latino
community, Ciliberto says, where a lot of folk beliefs about disease
persist . Some say Alzheimer's is caused by spirits. For others, the
disease carries so much stigma that they don't seek diagnosis or care.
Ciliberto chose another path, and as she helped her
mother get treatment, she decided she wanted to do more. She recently took
a newly created job at the
Massachusetts
chapter of the Alzheimer's Association, reaching out to Latinos and
teaching health professionals how they can break down some of the barriers
posed by language and culture.
"Our people are not receiving the care and the
education they need" about the disease, said Ciliberto, who lives in
Allston.
Ciliberto's outreach is part of a stepped up effort
nationally by the Alzheimer's Association and others to address cultural
barriers to dementia care. The effort targets African-Americans,
Asian-Americans, and Latinos, among other ethnic and racial groups. The
association is creating and distributing educational materials in English
and Spanish for patients and clinicians, planning a bilingual media
campaign, and trying to help doctors identify people at risk.
Driving the initiatives is concern that increasing
numbers of African-Americans and Latinos are at high risk of Alzheimer's
and other types of dementia because they have cardiovascular disease or
diabetes, and because they are reaching their 60s, 70s, and 80s, when
dementia typically strikes. In addition, new treatments are on the
horizon.
"As we enter an era in which there will be
treatments to slow progression of dementia, it's going to be very
important to make sure that such treatments move" into ethnic
communities as well, said Dr. Robert C. Green , a neurology professor at
the Boston University School of Medicine.
The outreach efforts are drawing on research suggesting
that dementia may affect different races and ethnic groups in different
ways.
A study of residents in upper
Manhattan
found that Caribbean Hispanics and African-Americans were twice as likely
as whites to develop Alzheimer's, even when researchers controlled for
other health differences. And a study of African-Americans across the
country -- led by Green -- found that they were 80 percent more likely to
develop all types of dementia than whites. But other research has found
rates of the disease that are about equal across racial and ethnic groups
within the
United States
.
Scientists are increasing research on these potential
differences and looking for possible explanations that could help prevent
the disease. So far, neither genetics nor the higher rates of
cardiovascular diseases among African-Americans and diabetes among
Hispanics has explained possible differences.
One line of research seems particularly applicable to
Ciliberto's family. A study conducted by
University
of
Pennsylvania
researchers found that Latinos developed symptoms of Alzheimer's about
seven years earlier than other people, according to material presented at
an international Alzheimer's conference in 2004.
And when Latinos and African-Americans seek diagnosis,
they frequently run up against a shortage of bilingual health
professionals and bias in cognitive testing that can hinder the process
and slow access to treatment, the Alzheimer's Association says.
Some researchers also suggest that testing bias might
account in part for higher rates of diagnosed Alzheimer's in
African-Americans.
"The real issue is the norms that we have for
these tests and the issue of cultural fairness," said Yaakov Stern ,
a neuropsychologist at
Columbia
University
Medical
Center
who studies cognitive testing. For example, the scores considered normal
are often adjusted for years of schooling, but that may set false
expectations if the schooling was poor, due to segregation or other
factors, Stern said. Or tests may use shapes or objects that are
unfamiliar to new immigrants, he added. Most memory clinics and academic
medical centers are aware of these problems and use multiple tests for
diagnosis, he said. But that's not always true for community doctors.
"In primary care, a doctor might rely on a mental
status exam for an initial diagnosis," he said, "so they have to
be aware that relying on a fixed cut [off] score is not valid."
Studies of the attitudes of caregivers, done in
Boston
, have found cultural beliefs that may pose barriers to care. Chinese
families told researchers that they tried to hide loved ones with dementia
because of perceived stigma. Ironically, in some cases, this harmful
reaction was exacerbated by a positive tradition of respect and protection
of elders. It's a reaction that Ciliberto hopes to change, with cultural
sensitivity.
"We can't keep hiding people," Ciliberto
said. "We need to get them help."
"We need to be respectful of what people believe
and what gives people hope," she said. "But we also need to
present the alternatives."
For example, she said, if a family thinks there's a
curse and wants to pray about it, she supports the prayer, but explains
that Alzheimer's is a disease.
"Let's fight it with prayer," she tells the
family. But let's also "fight it with every weapon available. Let's
go get the medication, let's go participate in research."
Ciliberto's mother is enthusiastic about her daughter's
work. "I've been very concerned and worried about what's happening in
our family and in other families as well," she said in Spanish, as
her daughter translated.
Her illness is in the early stages, and she is still
working as a teacher's assistant in a private school in
Puerto Rico
. From her daughter and her doctor, she is learning about Alzheimer's and
getting treatment, and she no longer dismisses her forgetfulness as a
normal sign of aging.
Misconceptions about dementia are also widespread in
African-American communities, researchers say. In some studies,
African-Americans were more likely than whites to dismiss memory loss as
typical of old age and to feel that they were not at risk for the illness.
That may help explain why studies find that African-Americans often don't
get care until the disease has progressed significantly.
"We missed the opportunity to have our Magic
Johnson in the world of Alzheimer's, to show everyone that this is not a
predominantly white disease," said Michael Kincade , coordinator of
medical and community outreach for the state Alzheimer's Association
chapter. Kincade said there have been several prominent African-Americans
with Alzheimer's, but they have not been public about their illness, in
the way that Johnson was about HIV. "The most frustrating thing is
trying to get people to grasp that the memory loss and other symptoms are
not normal."
Kincade and Ciliberto work on parallel tracks and are
expanding their efforts in
Boston
and
Springfield
, funded by two small grants received this month. They are targeting
middle-aged people with diabetes, obesity or heart disease -- who are at
higher risk for Alzheimer's and whose parents may already be suffering
from it -- and educating primary care physicians about risks for, or early
signs of dementia.
"If an African-American women is being seen for
diabetes and hypertension, there should be red flags that go up,"
said Gerald Flaherty , director of medical and scientific programs for the
Alzheimer's Association in
Massachusetts
. "We hope to uncover that untreated parent at home."
"There's clear evidence that by intervening with
the family and treating the stress of caregiving, the patient will do
better," he said.
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