Depression is both more prevalent among immigrant, refugee and migrant elderly than in mainstream older adults and less likely to be understood as a treatable illness. In many languages, the word for depression carries a negative connotation common to the stigma for all manifestations of mental illness. Depression is often expressed through somatic complaints. There are few culturally appropriate treatment options. Social connections are a powerful antidote to depression, but language and circumstance keep many limited-English speaking elderly isolated and alone.
CLESE recognized the prevalence of acculturation difficulties and the changed dynamics within immigrant and refugee families that resulted in many older limited-English-speaking elderly suffering from depression. In the fall of 2005, the Retirement Research Foundation funded a project to combat depression in four CLESE communities: Chinese, Korean, Polish, and Spanish-speaking. In subsequent years, other ethno-linguistic groups were added (Arab, Bosnian, Indian, Pakistani, and Russian) and additional organizations participated.
The project asked staff at participating organizations to receive training on depression, screen their clients for the disease, conduct staff and community education sessions, and refer elders to the own physicians for further screening and treatment. The heart of the project was an eight-session course of learning how to acknowledge losses and validate feelings and to develop resiliency strategies. The curriculum was developed by a geriatric social worker from White Crane Wellness Center and modified to meet the unique needs within each community. To see the curriculum, click here.
In the first three years, ethnic agency providers used two-questions to screen older adults for depression; the questions have been used in other major depression screening initiatives. They are:
“In the past month, have you been bothered by
- Little interest or pleasure in doing things?
- Feeling down, depressed and hopeless?”
As ethnic agency representatives discussed the language needed to translate the two questions, they searched for words that would precisely convey the meaning that were not excessively negative and were clearly understood; ‘down’ became ‘sad.’ The two questions were easy to use in casual conversations and were not seen as too threatening or raising cultural taboos about depression. Over the first three years, 2760 older adults were screened; 1559 said yes to one or more questions for a 56.5 percentage positive response rate.
In the last year of the project, at the urging of Retirement Research Foundation, the ethnic agency providers adopted the Geriatric Depression Scale, translated, and validated, into the appropriate language. Other agency staff members were trained in the administration of the GDS and encouraged to use it as a standard screening tool during intake of all older adult program participants. During the fourth year, 472 older adults were screened with 200, or 42%, scoring five or more on the instrument.
Over the course of the four year project, 921 older adults attended sessions at a participating agency. Each group developed its own character and culture. Although group facilitators followed the curriculum, they developed culturally appropriate activities and discussions to increase the relevance and impact of the program. One example: a Chinese group graphed their life satisfaction over the decades thus far; they were happiest in their very early years. When this activity was shared at a group meeting, the Polish leaders decided to replicate it, but obtained slightly different results as the happiest decades were in mid-life. Another example: to illustrate the similarities of participants, each person in a Korean group was asked to list their most troubling worries. When the list was tabulated, there were only thirteen different worries. Again, when other ethnic groups repeated this exercise, results were similar.
Building on the experience of the Alzheimer’s Disease Demonstration Project, CLESE included staff training as part of the project design. Over four years, a total of 1,622 staff members were trained to recognize depression, screen for it, and feel comfortable in making referrals, either to the group sessions or to local community resources.
The project also emphasized community education. Each year, participating agencies placed information about depression (sometimes including contact and registration information about the small group sessions) into local media, most often a community newspaper. In the final year of the project, a series of three articles were suggested to gradually inform the reader about depression, acknowledging the reluctance of most community members to accept that there is such a thing as depression, and culminating in an article encouraging older adults to see their own physician for assessment and treatment. During the four project years, new participants were recruited to attend subsequent sessions through the media outreach and education.
The final task of the project was to remind community physicians that they should consider depression when patients present somatic symptoms. Each participating agency shared a list of community physicians; White Crane Wellness Center sent a letter to the doctors reminding them that somatic symptoms could be a sign of depression and encouraging them to screen and treat their elderly clients for depression. The letters were followed by phone calls, to ensure the receipt of the letter. In many cases, physicians welcomed the suggestion. In the final year of the project, ethnic agency staff delivered information on the services provided by their organizations and some shared a translation about depression.
Lasting changes in the eleven organizations that participated in the project include: an increased awareness that staff members have of how older adults in their culture present depressive symptoms; knowledge of and linkages to resources in the community to treat serious cases of depression; on going groups of former eight week session participants continue to meet; and an understanding that providing socialization programs may help in preventing depression. It is now acceptable for staff, older adults, family members and other ethnic community members to acknowledge depression.
The Alzheimer’s Demonstration Project enrolls clients, escorted elders to their own physicians for medical assessments and enrolls people with memory problems in the Safe Return Program. One Safe Return enrollee, who could not speak English at all, was safely reunited with his family after getting off a bus many miles from his home. We work closely with the Alzheimer’s Association and Northwestern’s Cognitive Neurology and Alzheimer’s Disease Center, bringing education to ethnic communities and a review of the Alzheimer’s Disease protocol to bi-lingual, bi-cultural physicians.
The Alzheimer’s Project is a unique collaboration of three partners and nine ethnic specific organizations that seeks to provide assistance and support to almost 400 families of identified Alzheimer’s disease patients in underserved populations that do not understand Alzheimer’s disease and find it difficult, due to language and culture, to obtain a comprehensive medical assessment, access services and provide appropriate care in the home.
The partners and their role in the Alzheimer’s Project are:
Coalition of Limited English Speaking Elderly (CLESE): providing overall project administration, coordination with nine participating ethnic specific organizations; collecting and analyzing data; and translating materials.
Cognitive Neurology and Alzheimer’s Disease Center (CNADC) at Northwestern University Feinberg School of Medicine: providing established dementia diagnostic guidelines to bi-lingual community physicians in an accessible, easy-to-use format and being a resource for community physicians in evaluating, treating and managing the care of their patients and families who have memory problems, Alzheimer’s disease and related disorders.
Alzheimer’s Association, Greater Illinois Chapter: providing staff members who give information to ethnic agency representatives and presentations at the participating ethnic specific agencies on Alzheimer’s disease and the management of symptoms associated with memory problems.
Memory problems are considered a normal part of aging in Limited English Proficient (LEP) communities; entire families, not ‘caregivers,’ provide care; support groups are culturally unfamiliar; bi-lingual community physicians may not be familiar with dementia assessment protocols. To overcome these barriers, ethnic agency staff members are trained in distinguishing normal memory loss from Alzheimer’s disease or other dementias. Community physicians or the Alzheimer’s Association provide educational sessions for family members and the larger community in how to cope with disease symptoms.
Older adults with memory problems are enrolled in the Safe Return Program; they are provided with needed community-based services such as home care or adult day service; and they are encouraged to visit their physician for a comprehensive assessment to rule out and treat any conditions causing memory problems.
Coalition of Limited English Speaking Elderly (CLESE)
53 West Jackson, Suite 1340
Chicago, IL 60604
312-461-0812 / 312-461-1466 (fax)