Dementia diagnosis, treatment, and research with American Indians

Abstract

Researchers at the University of Texas (UT) Southwestern Medical Center’s Alzheimer’s Disease Center (ADC) have been diagnosing, treating, and studying Alzheimer’s disease in American Indians (AIs) for the past 15 years. In 1991, we were awarded a minority satellite by the National Institutes on Aging (NIA) to provide clinical care to underserved persons and to database clinical information for future research. We first served the Cherokee Nation in northeastern Oklahoma: our satellite was established with the permission of Cherokee Chief Wilma Mankiller and her council. We asked patients and families to allow us to store de-identified clinical data for research. Most agreed. Patients or their caregivers signed and kept a copy of informed consent documents approved by the UT Southwestern IRB and by the appropriate tribal body. Patients were seen by a neurologist and his staff in Tulsa, Oklahoma, and in the Hastings Indian Hospital in Tahlequah, Oklahoma, 70 miles from Tulsa. We were not able to engage Hastings Hospital staff, and ultimately, all patients were seen in Tulsa. When we later tried to develop an epidemiologic study of dementia in the Cherokee Nation, we were unable to obtain the tribe’s permission because we had published a study suggesting that Cherokees might have partial protection against AD [1]; therefore, this disease was not perceived as a problem by the Cherokee Nation. In 1998, we contacted the Dallas Urban Inter-Tribal Center of Texas (UITC), approached their outreach director, and presented our goals. The UITC staff asked what immediate benefit we could be to them and asked for assurance that we would not exploit their clients as researchers had done elsewhere. We agreed that all research would be done as part of good clinical care and pledged to do no research without the explicit permission of subjects and to maintain the confidentiality of all patient material. After consultation with a council of elders, we established the Honoring our Elders Memory Clinic. We transferred our satellite from Oklahoma, hired an AI nurse, and arranged a quarterly clinic at the UITC where individuals could be evaluated by ADC staff. Unfortunately, we were able to recruit only a few elderly patients. We were told that AIs came from Oklahoma to Texas for employment, but when they reached retirement age, they returned to Oklahoma to use tribal resources such as free medical care. In 1998, with the help of a new UITC administrator, we met the administrator of the Choctaw Nation Healthcare Center in Talihina, Oklahoma. He was enthusiastic, and