Alzheimer’s Disease: for seven years, CLESE managed an initiative, in partnership with Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center (CNADC) and with the Alzheimer’s Association Greater Illinois Chapter, to identify older adults with memory problems, link them to needed services, educate the larger community about memory problems and assist bi-lingual community physicians in conducting initial screenings in determining the cause of memory problems. Six years of the project were funded through a grant from the federal Administration on Aging to the Illinois Department of Public Health. The following ethno-linguistic groups participated: Arab, Assyrian, Bosnian, Chinese, Hindi, Korean, Polish, Russian, Spanish and Urdu. Eighteen CLESE organizations participated in the project; nine if the first three years and nine in the second project.
Over the six project years, participating CLESE organizations enrolled 921 older adults with memory problems; escorted 263 of them to physicians (most in their own community) for an assessment of memory problems; and enrolled 281 older adults with memory problems in the Alzheimer’s Association Safe Return program. At least two Safe Return enrollees, one on a bus and one at a dangerous intersection, were identified by their bracelets and happily escorted home.
CLESE learned that in all of the ethnic communities, Alzheimer’s disease did not translate well. In one language, it was “crazy,” in another, “dumb;” a third translation could also mean “catatonic.” Memory problems were often misunderstood, considered either as part of normal aging, or as a mental disease with great stigma. The program shifted focus to better meet the needs for improved understanding by first educating staff and then educating members of the larger community, especially family members. The Alzheimer’s Association Greater Illinois Chapter has developed comprehensive educational materials. CLESE simplified some of the documents and translated them. With the advice of the participating ethnic agency staff, developed educational materials to reflect specific cultural considerations. Staff from the Alzheimer’s Association assisted in conducting educational sessions. A popular prop was a head of cauliflower, the approximate size and weight of the human brain. In the last two years of the project, CLESE arranged for translations of the Alzheimer’s Association educational and interactive piece, “A Tour of the Brain.” Documents that were translated for the project can be viewed at www.brain.northwestern.edu/education/lep_materials.html.
Attempts to develop support groups failed due to assumptions from mainstream culture that are not shared in most ethnic communities, such as:
- One family member assumes responsibility for the care of the elder
- Providing care is a burden
- Older people lament losing their independence
- People feel better if they share their problems with others from similar situations
CLESE learned that what older adults and their families needed were oral presentations and simple, clear explanations of the disease and how to manage symptoms. They also needed understanding and access to services, such as home care, adult day services, and transportation.
The original role of Northwestern CNADC was to conduct a thorough assessment of older adults identified as having memory problems. Difficulties ensued as ethnic organizational staff provided escort to Northwestern as family members were unable to take time from work and no one could provide medical history for the client or the family. Many clients were uncomfortable going to the big hospital, far away from their comfortable neighborhoods. Each interview lasted twice as long as usual because of the time to interpret for both the physician and the client. Interpretation also made it hard for the physician to ascertain difficulties the older adults had with finding words or appropriate word usage.
To compensate for the difficulties in assessing cognitive abilities at Northwestern, CNADC staff conducted visits to bi-lingual, bi-cultural physicians in each of the ethno-linguistic groups in the project. At each visit, CNADC staff reviewed the protocol developed to assess older adults with memory problems for probable Alzheimer’s disease with the local physicians.
One year for research was funded by the Chicago Community Trust to ascertain why families in the second project so often decided not to seek a medical assessment. While 36% of participants in the first project saw a physician, only 13% had done so in the first two years of the second project. Northwestern CNADC conducted the research; three organizations held individual interviews with family members to ascertain why or why not physician assessments were sought. The three reasons most often given for not taking a loved one to the doctor included the belief that memory problems are a normal part of aging; the family was overwhelmed by other issues and concerns; and that a physician would not be able to help.
Women’s Health: CLESE facilitated two programs through the Illinois Department of Public Health’s Office of Women’s Health, the Building Better Bones project to educate and screen women for osteoporosis and Understanding Menopause to educate women about that life transition and how to improve their health in the years following menopause. The programs followed a similar format:
- Through focus groups and conversations with informed representatives, learn how osteoporosis and menopause are understood in a variety of ethnic communities.
- Translate (and revise as needed for clarity of translation) several documents on the topic, including a PowerPoint presentation.
- Assist participating agencies in conducting outreach to invite participants to a group educational session.
- Recruit a bi-lingual, bi-cultural medical professional to present the information and answer questions at the educational session.
- Collect demographic information on participants as they arrive at the session.
- Conduct pre and post tests to assure that participants learned new information.
- Conduct a follow-up survey three months after the educational session.
In the Building Better Bones project, women had their right heel bone scanned as a screen for osteoporosis. Women with scores indicating that they might have the disease, or were at particular risk for the disease, were referred to their own physician for further diagnosis and treatment.
Heart Disease and Stroke Prevention: Working through CLESE member organizations, older adults learned about heart disease and stroke prevention in their own language, including how to recognize symptoms and how to call 911. The heart disease and stroke prevention program also involved translations and educational sessions. Two informational pieces were translated: Know the Numbers of Your Body (explaining blood pressure and cholesterol readings, for example) and The Warning Signs of Stroke and Heart Attack. Older adult participants were invited to attend two sessions where a bi-lingual, bi-cultural physician explained, in their own language, how to understand information given to them by their own physician and how to know the signs of heart attack and stroke.
As part of each educational session, participants, in groups of three role-played calling 911. CLESE developed this educational feature after hearing numerous stories over the years of people being afraid to call because they don’t speak English very well, being kept on hold a very long time, or not being able to communicate their needs. In the role play, one person falls down (often to pleasing dramatic effect) while a “friend” calls 911. The third role-player is the dispatcher. Participants are instructed to clearly say the name of their language in English as soon as the dispatcher answers the phone. Then they wait until an interpreter is also on the line. Then they describe what is happening with their friend. The final interchange is the dispatcher saying, “Help is on the way.”
Tobacco Cessation: CLESE translated documents and enlisted the aid of bi-lingual, community physicians to explain the dangers of smoking to older adults and urge them to quit. Translations that CLESE has done on various diseases and conditions, including those listed above, are available through the Illinois Department of Public Health: www.idph.state.il.us/pub_home_lang.htm.
Knowledge of the health effects related to tobacco use has proven to be an effective deterrent and a motivation for smokers to quit. In FY 2011, CLESE received the grant from the Illinois Department of Public Health (IDPH) to promote Illinois Tobacco Quitline program, deliver outreach and public education about the health risks related to tobacco use and about resources for tobacco users who want to quit smoking in the Cambodian, Chinese, Polish, and Vietnamese-speaking communities of Chicago. CLESE translated IDPH educational materials which were used, along with first language media, to conduct public outreach campaigns in each of the targeted communities. Each participating agency hosted first-language educational presentations led by bilingual healthcare professionals where participants learned about the health effects of tobacco use and second-hand smoke, and about how to access help with quitting through the Illinois Tobacco Quitline. Translated materials are posted on IDPH website at www.quityes.org.
Coalition of Limited English Speaking Elderly (CLESE)
53 West Jackson, Suite 1301
Chicago, IL 60604
312-461-0812 / 312-461-1466 (fax)