By Mary Brophy Marcus, USA TODAY
Racial and cultural differences may impact how early people with dementia are diagnosed, the type of care they receive and how long they live— and they even impact the way families of Alzheimer's patients deal with grief when their loved one dies, according to several new studies.
Research presented at the Alzheimer's Association International Conference on Alzheimer's Disease in Honolulu, Hawaii, on Monday suggests more culturally-tailored resources could benefit African Americans, Latinos and other minority groups.
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"These results have significant implications for caregiver burden and community resources," says Maria Carrillo, the Alzheimer's Association's Senior Director of Medical and Scientific Relations. "Alzheimer's leads so many families through unfamiliar territory. The need for education, information, supportive services is paramount."
Kala Mehta, assistant professor in geriatrics at the University of California, San Francisco, and colleagues examined the relationship between dementia and two factors: nursing home placement and mortality. The Health and Retirement Study followed more than 7,500 older people — 10% were African-American and 6% were Latino — over 10 years.
During the study, 34% of participants died and 49% experienced significant cognitive decline. The researchers found that among the significant cognitive decline group, older African Americans and Latinos had about 50%-80% less placement in nursing homes compared to older whites. They were also less likely than whites to die during the follow-up period. The study does not evaluate why though.
The results — indicating a longer care period and less nursing home placement — suggest families providing caregiving might need and benefit from more culturally-appropriate dementia care resources, Mehta says.
Those resources might include in-home support services and adult daycare centers, for example, that would make Latino and African American families feel comfortable.
Mehta says dollars allocated for support programs are being cut in some places, like California, where she is located.
"We need to advocate for these programs to stay in place and grow, if anything," Mehta says.
Other research looked at ethnic differences in how caregivers of Alzheimer's patients cope with death.
Scientists at the University of Pittsburgh's Institute on Aging and the University of Michigan, studied expressions of relief, anger and acceptance in white, Hispanic and African-American caregivers after a patient with Alzheimer's died.
Results suggest that whites and Hispanics are three to five times more likely to report emotional relief when the patient they cared for dies, compared to African-Americans. Hispanics were only half as likely as African-Americans to report feelings of anger, while white caregivers were considerably more likely to report feelings of anger than both the other groups.
Michigan study author James McNally says the findings can help improve resources that will help caregivers throughout all the stages of their loved one's illness and during the final grieving process.
"The bereavement issues are not a surprise. Bereavement is also a risk factor in and of itself," says aging expert Gary Kennedy, of Montefiore Medical Center, in The Bronx.
Other research presented at the conference also suggests ethnic minority groups often seek a diagnosis much later than their white counterparts.
In a study of 22 families, including 10 black families, seven white families, and five American Indian families, researchers examined the Alzheimer's diagnostic process in each culture.
While all groups recognized the value of having a diagnosis, long delays often occurred between recognition of symptoms of dementia and scheduling a medical evaluation for the patient.
The study found that on average, African-Americans sought a diagnosis six years after dementia symptoms emerged, American Indians sought one after five years, and whites waited two years.
Study results also indicate that whites are more likely to seek support through formal services, while blacks and American Indians turn more often to their faith and spiritual beliefs for support.
"Most caregivers mistakenly believed that having dementia is normal and accepted it as a part of growing old," Dilworth-Anderson says.
In another study by Dilworth-Anderson, which included telephone surveys with 200 black and white caregivers, blacks reported the use of home health care services more than whites, and also reported having a greater availability of church resources. But blacks also reported that no services were available at a higher percentage than whites.
"It is of interest that African-Americans and American Indians seem to be more likely to resist the medical label of dementia compared to the European Americans which might factor into more delays in diagnosis or perhaps not even seeking medical attention and receiving a diagnosis," says R. Scott Turner, Director of the Memory Disorders Program at Georgetown University Medical Center.
Turner says how different populations perceive Alzheimer's and dementia is understudied, but is very important since demographics in the United States are changing.
"These findings are particularly compelling since we found that African-Americans are about two times more likely and Latinos about one and one-half times more likely to develop Alzheimer's and dementia," Carrillo says.
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