• Alzheimer's disease is more prevalent among African Americans than among whites.

• African Americans have a higher prevalence of vascular dementia and a lower prevalence of Parkinsonian dementia than do whites (Miles, Froehlich et al.JAGS 2001; 49:477)

• Epidemiologists predict that the number of African Americans at rick for dementia will increase by more than 200% from 2.5 million in 1995 to nearly 6.9 million in 2030.

• 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 and 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)

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.

• 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).

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.

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).

HISPANIC AMERICANS AND DEMENTIA

• Hispanic Americans maybe two 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)

• A study of community dwelling Hispanics with dementia revealed compared to predominantly white populations, a lower proportion of Alzheimer cases (38.5) and a higher than expected proportion of Vascular dementia (38.5%)(Fitten LJ et al. 2002)

Hispanic Cultural Beliefs about Dementia

1. Female family members are the designated caregivers . The care of people with dementia is the responsibility of the family, with the bulk of the burden of caregiving being delegated to female members of the family( i.e. wife, sister, female blood relative, female non blood relative). Only if there are no female caregivers available, then men are enlisted as caregivers.

3. Dementia is mental illness. Dementia is viewed as a form of mental illness. Many families also believe that the behavioral disturbances which emerge in dementia can be controlled and avoided by a diligent family caregiver (Gallagher-Thompson et al. 1996)

4. Dementia is shameful. Dementia like other forms of mental illness carries a great deal of shame, embarrassment and stigma for the patient and his family. This stigma may cause family members to minimize, deny and hide the behavioral and cognitive problems for outsiders. This sense of shame further discourages caregivers from seeking professional or informal support from others.

5. Family secrets should not be shared. The cultural norm for many family is to avoid sharing family secrets or embarrassing information with strangers, including health care providers.

Many Hispanic caregivers are often reluctant to use formal support services including adult day programs, day or overnight respite programs or in-home supportive services.

Some Hispanic caregivers are sometimes fearful of psychologically based interventions such as support groups or psychoeducational programs.

Some Hispanic caregivers are reluctant to admit to symptoms of "burden" because this implies they do not accept their role and are not grateful for the caregiving they have received from her parents and spouses.

Studies suggest that caregivers who are bicultural or attempting to live in both the Anglo and Latino cultures, experience more role strain, depression and guilt about the caregiver role than those who are primarily rooted in traditional Latino beliefs and role expectations (Calderon & Tennstedt 1998, Valle 1998, Cox & Monk 1996)

Hispanic caregivers and patients may be reluctant to use formal health care services since few of those agencies have significant bilingual and bicultural staff:

• to provide accurate assessment and treatment
• facilitate cultural bridges between the health care agency and Hispanic families
• effectively engage Hispanic families in a wide variety of treatment options

JAPANESE AMERICANS AND DEMENTIA

Recent studies suggest that the prevalence of dementia in Japan is similar to other countries but that Alzheimer's disease is rare and vascular dementia is more common. The ratio of vascular disease to Alzheimer's disease in Japan ranges from 1:1 to 3:1. Studies of Japanese Americans in Hawaii and Kings county suggest that the ratio in this group is similar to the rates reported in Caucasians in the United States and Europe. White et al. 2 analyzed data on 3,734 surviving members of the Honolulu Heart Program.

They found that elderly Japanese American men have a higher prevalence of Alzheimer's disease than do similar groups of men living in Japan. Among the Americans of Japanese descent, 9.3% were suffering from dementia of all causes and 5.4% had Alzheimer's disease (primary or contributing). In comparison, studies from Japan reported that prevalence of dementia in the range of 1.5% of men 65 years or older.

The Hawaiian study also looked at rates for vascular dementia. Some 4.2% of the Hawaii participants could attribute vascular dementia as a primary or contributing cause of their dementia. A rate of 3.2% was found in one Japanese study.

The researchers analyze their findings thusly: "Despite substantial problems related to comparability of studies conducted in Japan and the United States, it appears likely that older Japanese American men in Hawaii experience a prevalence of Alzheimer disease approaching that of European-ancestry Americans and a prevalence of vascular dementia only slightly above that observed in Japan. These observations lead us to speculate that environmental or cultural exposures associated with migration from Japan to Hawaii may have influenced the development of Alzheimer disease… while factors involved in the pathogenesis of vascular dementia have remained relatively unaffected."

1. Dementia is a form of normal aging. Many families interpret the memory difficulties and behavioral problems associated with dementia as the result of normal aging. One study suggested that due to this belief, some Chinese families do not believe symptoms of dementia represent an illness that requires medical assessment or treatment.(Elliott, Di Minno, Lam et al. 1996

2. Dementia is a form of mental illness. Some Asians families perceive symptoms of dementia (paranoia, hallucinations, delusions etc.) as form of mental illness. There is a great deal of stigma and shame associated with dementia and mental illness among Asia American. Japanese words for dementia include kichigai (crazy, insane) and bokeru (senility or forgetful in old age). These negative responses by families and patients interfere with their willing to seek appropriate medical assessment and treatment in the early stages of the illness.

4. Dementia is unavoidable. Dementia is perceived by some Japanese Americans by the concept of shikata ganai ("you can't help it"). This attitude would also delay elders and their caregivers seeking diagnosis or treatment interventions for cognitive disorders.

Traditional cultural values such as omae (the importance of interpersonal harmony and relationships), oykoko (filial piety) and giri (obligation to one's family) encourage caregivers to provide home based for Japanese elders with dementia. When the elder with dementia lives with his adult children, the primary caregiver is usually the wife of the eldest son or the eldest daughter if there is no son. There are also many Japanese Americans who live alone or with a spouse who are beginning to use Japanese community based formal social service agencies such as Keiro Services in Los Angeles.

Recommendations for Health care providers

1. Provide the often overburdened female caregiver information about support services that she and the family are eligible for.

2. Provide accurate assessments of the elder's ability to conduct activities of daily living since family members may minimize or deny the degree of the elders level of functional impairment.

3. Be knowledgeable about the community and social issues that face the Japanese Americans that you work with. Develop collaborations with highly regarded, existing Asian community agencies to improve your credibility with patients and their families and increase their likelihood of participating in those services.

4. Develop a therapeutic rapport with your patient's by utilizing their explanatory models of illness and explain in simple, practical terms how they will benefit from your interventions

5. Provide culturally sensitive, relevant materials about dementia written in the language of the target population

6. Continually expand you knowledge of the culture and social values of Japanese Americans

Elliott K. Di Minno M, Lam D & Tui A. Working with Chinese Families in the context of dementia. IN G.Yeo and D. Gallagher-Thompson (Eds), Ethnicity and the Dementias. Washington DC: Taylor & Eng. 1996:89-108

White L, Petrovitch H, Ross GW et al. Prevalence of dementia in older Japanese-American men in Hawaii: the Honolulu-Asia aging study. JAMA 1996; 276: 955-60.

Graves AB, Larson EB, Edland SD et. al Prevalence of dementia and its subtypes in the Japanese American population of King County, Washington state. The Kame Project American Journal of Epidemiology, Vol 144, Issue 8 760-771

Gallagher-Thompson D, Hargrave R, Hinton L et al. Interventions in a Multicultural Society. IN D. Coon, D Gallagher-Thompson, LW Thompson (Eds), Innovative Interventions to Reduce Dementia Caregiver Distress. New York City: Springer Publishing 2003:50-73

CHINESE AMERICANS AND DEMENTIA

The true prevalence of dementia is unknown since there are currently no large scale prospective population-based studies examining the prevalence of Alzheimer's disease and related disorders among Chinese Americans. Huang et al. 2002 published the first systematic report of the socio-demographic characteristics of newly admitted older Chinese to an urban nursing home in the United States. Using the Minimum Data Set database, the author selected 250 residents (125 Chinese, 57 white, 53 Hispanic, and 23 black) over age 60. Among the Chinese Americans the majority were first-generation immigrants and spoke primarily Cantonese or Mandarin Chinese. Compared with whites, they were more likely to be married, less likely to have lived alone, more likely to be using Medicaid, less likely to make medical decision alone, and more likely to depend on family members for decision-making. Nearly 75% of this group demonstrated significant cognitive impairment.

1. Dementia is a form of normal aging. Many families interpret the memory difficulties and behavioral problems associated with dementia as the result of normal aging. One study suggested that due to this belief, some Chinese families do not think that symptoms of dementia represent an illness that requires medical assessment or treatment.(Elliott, Di Minno, Lam et al. 1996

2. Dementia is a form of mental illness. Some Asians families perceive symptoms of dementia( paranoia, hallucinations, delusions etc.) to be synonymous with other types of mental illness such as schizophrenia. The Chinese word for dementia is represented by two characters one which means crazy and the other means catatonic. The stigma, shame and negative responses experienced by families and patients interfere with their willing to seek appropriate medical assessment and treatment in the early stages of the illness.

3. Dementia is a source of shame. Chinese American families may minimize the behavioral/cognitive disturbances associated with dementia. Many families will hide the elder with dementia from public view and avoid sharing family secrets or embarrassing information with strangers, including health care providers. They may feel that discussing the problems of caring for a Chinese American elder with dementia with outsiders would cause the family to lose face.

4. Dementia is a result of fate. Dementia is perceived by some Chinese Americans as inevitable. This fatalistic attitude often delays elders and their caregivers seeking diagnosis or treatment interventions for cognitive disorders.

5. Dementia is retribution for the sins of the family or of one's ancestors.

6. Dementia is an imbalance between the body complementary forms of energy ("yin" and "yang").

Traditional Chinese values dictate that the dedicated caregivers for elders are their oldest son and his wife or other children if the eldest son is not available. When a daughter marries, she becomes responsible for the care of her in-laws. She is no longer considered part of the family caregiver network for her family of origin. on. There are also many Japanese Americans who live alone or with a spouse who are begin.

Many Chinese families maintain strong social and spiritual ties with the surrounding Chinese community.

1. Determine the Patient's country of origin and the specific nature of his/her migration Chinese Americans come to America from a variety of countries( e.g.Taiwan, Hong Kong, main land China, Vietnam) with significantly difference in their political, cultural and social environments. Clarifying the patients pre-emigration lifestyle, will help the clinician provide the most appropriate services for the patient and his family.

2. Provide accurate assessments of the elder's ability to conduct activities of daily living since family members may minimize or deny the degree of the elders level of functional impairment.

3. Develop collaborations with highly regarded, existing Asian community agencies to improve your credibility with patients and their families and increase their likelihood of participating in those services.

4. Identify the primary language or dialect of the patient and his caregivers. Cantonese and Mandarin are the two Chinese language forms most commonly spoken by émigrés to the US, there are numerous other dialects which patients may speak. Accessing language appropriate translation services is a key element and developing rapport with the patient and establishing a collaborative working relationship.

5. Identify the primary caregiver and decision maker within the family. Actively develop a rapport with these people and collaborate with them on developing a Provide culturally sensitive, relevant materials about dementia written in the language of the target population

6. Continually expand you knowledge of the culture and social values of Chinese Americans

7. Use Asian media (Asian newspapers, television and radio stations) to publicize the availability of Chinese friendly dementia care services

8. Develop bilingual, culturally sensitive in-home dementia care services to assist family caregivers

REFERENCES

1. Working with Chinese Families in the Context of Dementia, Elliott KS, Di Minno M, Lam D et al. In Ethnicity and Dementia (eds) G. Yeo and D.Gallagher Thompson, L Thompson (pp.89-100). Taylor and Francis

2. Asian and Pacific Islanders Dementia Care Network Project

3. Sociodemographic and health characteristics of older Chinese on admission to a nursing home: a cross-racial/ethnic study.Huang ZB, Neufeld RR, Likourezos A et al.J Am Geriatr Soc. 2003 Mar;51(3):404-9.