CHICAGO – Patients with Alzheimer's disease face many challenges, including proper diagnosis, ongoing care, and burdened families. But older people who have immigrated to the United States from non-English speaking countries and may have Alzheimer's disease face even greater hurdles, according to Beth O'Grady, of the Coalition of Limited English Speaking Elderly, and her colleagues.
“It's important to reach low English proficiency communities because Alzheimer's disease [AD] is not well understood in these communities,” said Ms. O'Grady, speaking at a joint conference of the American Society on Aging and the National Council on Aging.
In an effort to improve the understanding and support for older adults who have cognitive impairment in these communities, Ms. O'Grady joined Melanie Chavin, of the Alzheimer's Association's Greater Illinois Chapter and Darby Morhardt, of Northwestern University, Chicago, to develop an outreach project for people with Alzheimer's disease and their families who speak little or no English.
The project coordinators first completed a 3-year research project that targeted physicians and families in communities that spoke primarily Polish, Russian, Korean, Chinese, and Spanish. They now are completing the second year of a 3-year project working with communities in which the primary languages spoken include Arabic, Assyrian, Bosnian, Hindi, and Urdu.
The project coordinators hope to increase the number of older adults in these communities who use their services by reaching out to limited English proficiency (LEP) communities and by determining the kind of additional support that patients and families need.
Lessons learned from the first 3-year project have already shaped efforts by the project coordinators to improve AD services in LEP communities. The coordinators discovered a lack of understanding among the community members about what AD is. They also realized that cultural differences play a big role in how certain ethnic groups respond to a diagnosis of AD in a family member. “Education [about AD] is very valuable, but it must be offered in a culturally sensitive way,” Ms. Chavin said.
In addition to educating communities about AD, the panelists also reached out to physicians in the LEP communities they were targeting to find out more about how they diagnosed and treated patients with memory loss. The physicians with whom the panelists interacted could speak the same language as their patients and generally worked as solo practitioners in small storefront clinics.
Getting physicians in the communities on board to recognize memory loss and cognitive impairment was one of the major hurdles that the program coordinators faced. The physicians in the communities did not always think that memory loss was a condition they needed to address, Ms. Morhardt said.
The panelists determined that time constraints often make proper diagnosis and treatment of patients with memory loss very challenging for many of the physicians working in the LEP communities. “The physicians were very busy and were not always open to the diagnostic guidelines,” said Ms. Morhardt, speaking about findings from the initial part of the project.
Lack of reimbursement for diagnosing dementia cut short the time physicians in the study would need to embark on a diagnostic plan. The solo practitioners also tended to be isolated and unaware of resources available to them, such as centers devoted to the diagnosis and treatment of AD at two academic institutions in Chicago.