Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities.

Limited data exist on how members of different cultures understand dementia. The Northwestern Cognitive Neurology and Alzheimer's Disease Center in collaboration with Coalition of Limited English Speaking Elderly and Alzheimer's Association-Greater Illinois Chapter collaborated to raise awareness in 5 limited English proficiency (LEP) communities (Assyrian, Arabic, Bosnian, Hindi, and Urdu) during 2005 to 2008 through a grant from the Administration on Aging Alzheimer's Disease Demonstration Grants to States. After the second year of the program, 267 individuals with cognitive impairment were identified with cognitive impairment and enrolled; however, only 13% of those sought a medical evaluation to obtain a diagnosis or further help for their memory problems. This project sought to: (1) understand how these LEP community groups conceptualize dementia and (2) understand reasons LEP communities sought or did not seek a diagnosis. Using a community-based participatory research approach, ethnic community leaders conducted 48 interviews in a convenience sample of persons enrolled in the previous Administration on Aging demonstration grant. These interviews were conducted with family members of identified persons with dementia in their native language. Interview notes were translated and subjected to thematic analysis. The majority view memory loss as explainable and normative--due to aging, reaction to medication or trauma experienced by war, family problems, or the immigration experience. This conceptualization and the perception that a doctor cannot help influenced whether they sought an evaluation. Those who saw a doctor were looking for medical treatment and help with difficult behaviors. Experience in the doctor's office was variable. Discussion of analysis with ethnic communities revealed the significance of stigma in the data gathering. Continued community-based participatory research approaches with LEP communities could further highlight needs for culturally relevant education and intervention.