Racial and Ethnic Disparities in Alzheimer's Disease: A Literature Review. Interventions to Reduce Racial and Ethnic Disparities


Although there is extensive evidence documenting disparities among different racial and ethnic groups with Alzheimer's disease, there are few studies evaluating interventions to address disparities in this population. Almost all interventions designed to explicitly address racial and ethnic disparities focus on cultural competency on the part of the health care provider and/or health system. Interventions not specific to the Alzheimer's disease population include care coordination, care management, community health workers, and culturally tailored education interventions (Quinones et al., 2011).

Cultural Competence

Cultural competency is especially important in the health care setting, where barriers to communication and access to quality care can result in delayed diagnosis, inappropriate treatment, or worse. Cultural competence involves both awareness and knowledge about other cultures and skill in relating to people of other cultures. Cultural competence requires acknowledging that culture and ethnicity guide and affect behavior, and that all people are cultural beings (Betancourt et al., 2003).

A culturally competent health care environment includes the following characteristics (Anderson et al., 2003): a culturally diverse staff that reflects the communities served; bilingual staff or interpreters for the clients' languages; culture-specific and language-specific training for providers; and signs and materials in the clients' languages that are sensitive to cultural norms.

One example of a policy designed to address disparities at the systems level is the Culturally and Linguistically Appropriate Services standards issued in 2000 (Office of Minority Health, 2001). This policy mandates certain activities (e.g., competent language assistance services and signage/materials in different languages) and encourages others (such as culturally competent care and staff diversity). The evidence for improved outcomes as a result of interpreter services is mixed, but a few studies suggest that patients with limited English proficiency who receive language assistance are more satisfied with their care and have better clinical outcomes (Smedley et al., 2003).

Cultural competence education is mandated as part of medical licensure or continuing medical education requirements in New Jersey, Washington, and California, and other states are debating similar rules (Eiser & Ellis, 2010). The accrediting authority for medical schools in the United States also has standards for cross-cultural curricula as part of undergraduate medical education (Liaison Committee on Medical Education, 2012).

Many studies of cultural competence training, not specific to Alzheimer's disease, have found that it has a beneficial effect on the attitudes, knowledge, and skills of physicians and on patient satisfaction (Beach et al., 2005). For example, 17 of 19 studies of cultural competence training for health professionals found a beneficial effect in terms of knowledge; 21 of 25 studies found that such training improved attitudes; and 14 of 14 studies showed benefits of training in improving skills. In addition, three studies found that cultural competence training of health professionals improved patient satisfaction. No definitive evidence has yet linked this training to improved health outcomes (Beach et al., 2005; Betancourt et al., 2003). One study of counseling of Black female patients showed that cultural competence improved patient adherence (Beach et al., 2005) .

The goal of the Administration for Community Living-funded Alzheimer's Disease Supportive Services Program (previously called the Alzheimer's Disease Demonstration Grants to States program) is to provide or expand support services for traditionally underserved or hard-to-serve Alzheimer's patients and their caregivers, especially minorities and rural residents. The Illinois intervention focused on older persons who spoke Arabic, Assyrian, Bosnian, Hindi, and Urdu (Wiener & Mitchell, 2007). The grant worked with the Coalition of Limited English Speaking Elderly (CLESE), an organization representing 45 Chicago-area ethnic organizations that provide services to older people. Under the grant, CLESE organizations translated materials into the appropriate languages, identified home care clients with memory loss, made home visits to try to enroll elderly people into the program, conducted caregiver training, and trained providers to screen for dementia.

A recent comprehensive review of interventions focused on Alzheimer's disease and related disorders caregivers found 18 studies, of which 11 considered cultural factors in their design; eight of those 11 studies were from the REACH initiative (Napoles et al., 2010). Cultural tailoring in these studies addressed familism (i.e., the primacy of the family over individual interests), language, bicultural and bilingual staffing, health literacy, the need for advocacy, protecting elders, and logistical barriers.

Quality of care is related to cultural competence and diversity among providers (Daker-White et al., 2002; Means, 2002). Where service providers match clients with staff according to ethnicity and language, patient outcomes may be improved (Braun & Browne, 1998). Similarly, when staff receive training in cultural awareness and sensitivity and cognitive testing is language-appropriate, this may help address some disparities (Daker-White et al., 2002).

Caregiver interventions may be more effective if delivered by staff who are not only bilingual but also bicultural (Napoles et al., 2010). For example, the REACH and REACH II projects--multisite studies to evaluate culturally tailored interventions--were effective at reducing depression and improving quality of life among caregivers (Belle et al., 2006). One of REACH's strengths is the tailoring of the intervention materials individual caregivers, and the bilingual/bicultural staff.

Outreach to Minority Communities

Another approach to addressing disparities involves targeting programs and outreach to minority populations. For example, the Alzheimer's Disease Demonstration Grants to States program provided demonstration grants to Florida, Kentucky, and the District of Columbia, that focused on African Americans (Wiener & Mitchell, 2007). For example, in the District of Columbia, the intervention focused on educational efforts conducted within church communities. They also held awareness events and developed caregiver respite programs. More recently, several of the current Alzheimer's Disease Supportive Services Program grantees, including South Carolina, California, Florida, North Carolina and Puerto Rico, are targeting ethnic or racial groups.

Another intervention aimed at reaching minority populations is the Alzheimer's Disease Research Center Satellite Diagnostic and Treatment Clinics program (National Institute on Aging, 2010). Begun in 1990, the program established satellite clinics linked with one of the 30 existing Alzheimer's Disease Centers. In recent years, satellite clinics have been established on the Choctaw nation reservation, in Harlem, at Grady Hospital in Atlanta, and in St. Louis. The Alzheimer's Disease Centers are actively involved in formulating strategies and plans to recruit diverse populations to their clinics. Strategies that have met success include improved patient coordination, increasing the personal attention patients receive, home visits, and support groups (National Institute on Aging, 2010).


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