AFRICAN AMERICANS AND DEMENTIA
RISK FACTORS
- First-degree relatives of African Americans with Alzheimer's Disease have a higher cumulative risk of dementia than do those of whites with AD. Thus there is a greater familiar risk for dementia (Greene, Cupples et al. JAMA. 2002;287:329-336
- African Americans maybe four times more likely more likely than whites to develop Alzheimer's Disease by age 90. This increase in risk was not related to differences in education or the presence of a family history of an AD-like dementia. (Tang et. al. JAGS 1999)
- The presence of an APOE-(epsilon)4 allele is a determinant of AD risk in whites, but African Americans and Hispanics have an increased frequency regardless of their APOE genotype. These results suggest that other genes or risk factors may contribute to the increased risk of AD in African Americans and Hispanics.
- A recent study suggests that people with hypertension or hypercholesterolemia 2x more more likely to develop Alzheimer's Disease. People with hypertension and hypercholesterolemia are 4x more likely to develop dementia
-
The relationship between hypertension, cholesterol levels and dementia
is particularly relevant for elderly African American patients because
they are more likely than whites to have hypertension and/or diabetes.
(Medicare Beneficiary Survey)
AFRICAN AMERICAN CULTURAL BELIEFS ABOUT DEMENTIA
1.Dementia as normal aging: Many African American caregivers view memory deficits and behavioral difficulties as an expected consequence of normal aging. AA caregivers may not consider dementia an illness. Symptoms of dementia may evoke little concern among caregivers until the disease is in the advanced stage (Valle 1989, Zhang 1990).
2. Dementia as mental illness: Some authors report that the neuropsychiatric symptoms and behavioral problems associated with dementia may be viewed by AA families as a form of mental illness and are associated with substantial stigma and denial (Cox & Monk).
3. Dementia as a culture specific syndrome: Behavior disorders in dementia may resemble African American culturally specific syndromes including worriation and spells(Gaines). “Worriation” is a combination of anxiety and preservative, ruminative thinking that can cause brain damage. Worriation is felt to be the result of overusing the mind to the determent of the brain (Gaines). Worriation may resemble the anxiety, agitation and obsessional thinking observed in some dementia patients. “Spells” refers to a period of unusual consciousness that may range from periods of extreme anger or irritability, fugue states, trances or waking visions (e.g. when someone is awake and believes that he sees a dead relative). The fluctuations in mood, cognition and perceptual distortions characteristic of some forms of dementia may be interpreted as the patient having "spells" .
4.Dementia as a disruption in social functioning: Some authors suggest that AA caregivers may not acknowledge that symptoms of dementia as problematic until the patient can not fulfill his usual family or social roles. Some authors suggests that Southern/black cultures place greater emphasis on performance of social role functions and affective functioning within the family than on cognitive functioning.
PROFILES OF AFRICAN AMERICAN CAREGIVERS
- African American compared to Caucasian caregivers less likely to be a spouse of the elder (Lawton) and are more likely to be more likely to be adult child of the care recipient (Hinrickson).
- African American caregivers are often not married and are less likely to have spousal or financial responses available to them (Hinrickson). Primary AA caregivers were younger and had less formal education and lower socioeconomic status when compared with Caucasian caregivers (Young 1988, Hinrickson, Haley 93).
- Numerous studies have reported that the majority of African American caregivers are actively managing more than one person and may be responsible for the well being of children and other family members (Hinrickson, Wood, AARP).
-Though there is usually a designated primary caregiver, AA elders are often aided by a network of friends and family members (Lawton 92). Adult children are the most preferred caregivers, but siblings, other relatives and friends also provide assistance when children are not available(Taylor 1988).
- Cox and Monk suggest that previous research may have overestimated the availability and extent of assistance rendered by African American children and other family caregivers. They suggest that adult children may be increasingly affected by strains and commitments in their own lives which may severely limit the amount of assistance they can offer frail African American elders.
- Little is known about the health status of AA caregivers. This situation is particularly problematic since many caregivers fit in the age group (45-64 years) which experiences significant health problems (Gibson 86, Horton & Smith 90).
- Caregivers of AA elders maybe particularly vulnerable to poor health outcomes because they take on the bulk of care (Yee 90, Taylor 86 91), they underutilize formal care services to assist in care (Segall 1988) and mortality rates AA compared to White caregivers in the same age group (U.S. Dept of Health & Human Services 1991). A few studies have reported that AA caregivers report poor health (Miller 1995).
CAREGIVER ATTITUDES
In the southern/Black tradition, elderly people are highly valued because of their longevity. Their longevity represents the culmination of a lifelong process of obtaining wisdom, knowledge and appreciation of universal biblical truths (Gaines). Since AA elders maintain substantial status in their families, churches and communities, family caregiving for AA elders is highly socially valued and strongly encouraged. In one of the few studies of AA caregiver attitudes, Lawton et al reported that AA more strongly than Caucasians subscribed to traditional values about caregiving. Traditional caregiving values include: the caregiver’s desire to repay the debt of being cared for as a child, continuing family tradition of mutual concern, fulfilling personal values and setting an example for one’s children.
Several studies have suggested that African American compared to Caucasian caregivers report less depression and role strain while caring for dementia patients. Some authors have suggested that role strain may have been mitigated among AA caregivers because they have cared for family members throughout the life cycle and have more realistic role expectations. The experience of role strain may not have taken them completely by surprise. AA caregivers may have fewer difficulties in role contraction/exhaustion, role demand and role conflict. Other studies suggest that African American caregivers frequently use a variety of strategies to mediate stress and burnout including greater use of social supports and coping mechanisms, such as prayer and religion, that protect them against negative effects of the stressors.
BARRIERS TO CARE
- KNOWLEDGE: Awareness of specific services is crucial aspect of health services utilization patterns. AA caregivers maybe less knowledgeable about dementia assessment centers and the full array of available formal care services.
- FINANCES: The health practices of AA elders is often limited by their financial situation. Since AA elders are often economically disadvantaged and uninsured their service utilization is limited to medical services provided by already overcrowded, underfunded public and county health care systems (Davis and Rowland 1983, Strauss 1988). Many investigators have noted the lack of continuity of care among AA and other minority patients. AA patient often more likely have serious or chronic illnesses, are more likely to use emergency rooms, are less likely to have a regular source of health such as a primary medical doctor(Butler 1988, Davis 1985, Leon 1987)
- MISTRUST: Several investigators have reported high level of mistrust of Caucasians and White medical institutions (Terrell 1981). Strauss suggests that AA and other minorities avoidance of formal health care agencies is related to unfamiliarity with the “culture of medicine and lack of cultural sensitivity of medical professionals. Dissatisfaction with formal health care systems may be one of the factors that promotes the continued use of informal caregivers and alternative health care providers (e.g. folk healers)
-CULTURAL RELEVANCE: Difficulty with access to services has been felt to be due to lack of cultural relevance and inability to met unique culturally defined needs of patients and caregivers (Gallagher-Thompson 1994, Valle 1989).
- DIAGNOSIS: Currently accurate assessment of dementia and referral to appropriate services is hampered by diagnostic instruments which are significantly affected by culture, education and literacy (Hart et. al. 1996). Several studies have reported underdiagnosis and undertreatment of mood disorders in AA elders in nursing homes(Class 1996). Numerous studies report that that the underdiagnosis and treatment of mood disorders in dementia leads to greater morbidity and mortality.
- DISCRIMINATION: Institutional bias and discrimination are additional factors that increase the barriers to care for African American elders with dementia. Several authors have suggested that underutilization of nursing homes by AA patients is due partly to discriminatory admission practices, limited availability of health insurance and racial segregation in nursing homes (Falcone 1994, Belgrave 1993, Smith 1990).
Recommendations for Health care providers
1. RAPPORT: Develop a rapport with available members of the caregiver network. Try to work with the caregiver network to identify one or two key informants who will consult with regularly.
2. COMMUNICATION: Clarify with the caregivers what degree of detail that they want to know about the elder’s condition. Collaborate with the caregivers on the frequency and manner in which they would like to have updates on the patient’s condition. Some families will want a clearly articulated medical diagnosis such as Alzheimer’s Disease. Other families will feel uneasy about a medical label and are more concerned about management of problem behaviors.
3. INFORMATION: Provide the family with books, pamphlets, videos and Internet sites about the cause and disease progression of dementia.
4. MEMORY ENHANCERS: Encourage families to consider medications such as Aricept, which has been shown to slow the progression of the disease and has been helpful in the management of behavioral disturbances Encourage AA families to participate in clinical trials of new medications for cognitive enhancement.
5. LONG TERM CARE: AA caregivers should be informed about the availability of long term care services such as day care, respite care, home care, support groups and individual and family counseling. Recommendations concerning these treatment options may need to be repeated several times over the course of months and years.
RECOMMENDATIONS FOR DEMENTIA PROGRAM DIRECTORS
ACCESSIBILITY
- Dementia programs should increase their efforts to utilize people who are culturally compatible with the target population. Agencies should be encouraged to conduct sensitivity training when ethnic minority staff are not available.(Valle 1990). Dementia related programs need to be located with African American community.
- Dementia related agencies working with AA can increase their effectiveness if they provide social and health services combined with culturally relevant outreach and educational programs (Valle 1989).
- African American national and community organizations should be encouraged to participate in education and outreach to AA elders concerning dementia assessment clinics and long term care options.
DEMENTIA ASSESSMENT
Many authors have described the need for validation of the efficacy of existing standardized tests among AA and other ethnic elders (Teng 1990). Additional resources should be focused on the development of new culture-free assessment instruments with increased sensitivity and specificity and alternative strategies for detecting dementia in diverse ethnic populations( Teng 1990).
ALZHEIMER SUPPORT GROUPS
African American and other ethnic minority caregivers usually do not attend support groups. But Henderson et al. outlined a detailed strategy to improve outreach to African American and Hispanic caregivers which consisted of:
1. Implementing a targeted ethnographic survey and repeated interviews of key community figures to assess the concerns and lifestyles of the AA community.
2. Initiating repeated contacts with AA caregivers through letters, telephone calls, home visits and provision of staff person to broker community resources
3. Conducting support group meetings in culturally neutral locations (e.g. churches)
4. Ongoing advertisements of the support groups and continual identification and recruitment of new minority caregivers.