Alzheimer's disease: African Americans at Risk

Alzheimer's Association
Friday, 13 July 2001

Racial bias, covert racism and cultural insensitivity in the Alzheimer care and research communities put African Americans with Alzheimer's disease at risk, according to two experts at the 10th National Alzheimer's Disease Education Conference.

"Barriers exist to early detection of Alzheimer's disease and acquisition of services for African Americans," said Vicki Lampley-Dallas, MD, MPH of the University of Oklahoma Health Sciences Center in Oklahoma City, Oklahoma. "African Americans stand a greater chance than whites of being misdiagnosed and mistreated by the very people who are supposed to help them, including physicians, nursing homes and community service providers."

Early detection and diagnosis are essential to the well-being of an individual with Alzheimer's disease. The actual diagnostic work-up involves several steps — an initial evaluation including a medical history, a clinical examination, laboratory tests and a mental status evaluation.

However, most mental status evaluation tests, including the popular Mini-Mental State Exam (MMSE), are racially biased, according to Lampley-Dallas. "Recent data on this particular screening tool reveals an alarmingly higher rate of false positives in African Americans. For example, only 58 percent of non-demented African Americans were correctly classified versus 94 percent of non-demented whites. The lower specificity in African Americans for this tool clearly results in the over diagnosis of dementia in this population."

If a person is incorrectly diagnosed with Alzheimer's disease, it can be extremely traumatic. The individual must face unnecessary testing, useless treatment, increased costs and an emotional roller coaster ride. The implications for the associated family members must also be considered. This type of experience can erode the already-fragile trust African Americans have of the health care system, and of research-linked detection tools. To avoid this, Lampley-Dallas suggests that physicians consider culture and differences in experiences when they administer a mental state assessment tool to an elderly African American individual.

"It is critical that a diagnosis of Alzheimer's disease be given to a person within the context of that individual's life," said Jennie Ward Robinson, PhD, director of Medical and Scientific Affairs for the Alzheimer's Association. "To be accurate, evaluation tools should be culturally sensitive and account for cultural, ethnic and/or racial differences between individuals."

During the conference, Lampley-Dallas also presented the results of two African American focus group sessions on Alzheimer caregivers' opinions of the health care system. Several recurring themes throughout the caregivers' responses were:

- a general disenchantment with nursing homes and their "dementia care"

- a belief that physicians were not very aware of local services that could help families

- a perception that some health care professionals were racist, i.e. automatically assuming that African American caregivers would be unable to pay for services

To address the covert racism perceived by African Americans in the health care system, Lampley-Dallas suggests an important first step. "Long-term care facilities, hospitals, physicians offices and other points of service should sponsor cultural sensitivity training for its employees. This may improve employee attitudes and interactions with customers overall."

Several of these caregivers pointed out that African Americans traditionally care for a loved one through the extended family and tend to remain private and stoic, unwilling to share their "business" with others. However, the focus group participants acknowledged that sharing their feelings or asking for advice in a support group could be very helpful. Participants indicated that they had difficulty finding a support group in the African American community.

To address the scarcity of support groups in the African American community, the Alzheimer's Association of Oklahoma developed several support groups in predominantly African American communities. The chapter formed a multi-cultural committee that has developed standard procedures to include multi-cultural issues in all existing or newly developed programs. They also routinely have exhibits and speakers at the Annual State Minority Task Force Conference.

To effectively combat Alzheimer's disease in the African American community, it is critical to have minorities participate both as scientists and as participants in research aimed at minority communities. While recruitment and retention of minorities including African Americans within research remains a daunting challenge, one Ohio research facility has made successful strides in this area.

"Going beyond the standard educational program on dementia is imperative if you want to recruit research participants in the African American community," said Marcia M. Neundorfer, PhD, RN of the University Alzheimer Center in Cleveland, Ohio. "This population, due to past negative experiences, has a general mistrust of the health care system. They need to recognize you as a part of the community, a true neighbor, before they will accept you and be willing to participate in your research."

As part of its efforts to become a part of the community and educate people about Alzheimer's disease, the Center recently hosted two unique programs—a grief workshop with a culturally sensitive manual and a play with a culturally sensitive educational video. The workshop is titled "Matters of the Mind and Heart: A Grief Workshop" and deals with coping with all kinds of losses, including dementia in a family member. The play, "Eighth Day of the Week," is a drama about an African American family facing their mother's memory loss and what it means to their family. The grief workshop was well attended and the free play surpassed all attendance expectations—more than 700 people, mainly African Americans.

According to Neundorfer, these programs have increased the visibility of their research center. "Visibility is only the first step, however. Getting African Americans to enroll in research programs takes culturally sensitive, individualized follow-up."

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org