Blacks with Alzheimer’s face obstacles to care  

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By Darlene Donloe

Contributing Writer

It has been that Blacks are twice as likely to acquire Alzheimer’s than their white counterparts.

It also has been noted that Blacks are diagnosed years, even decades, into acquiring the disease thus preventing effective treatment, which could lead to a slower progression of the inevitable, and that Blacks are also less likely to participate in clinical trials due to their distrust of the medical establishment.

This is the second in a series of articles on the impact of Alzheimer’s disease on the Black community in Los Angeles.

How many Black people in Los Angeles suffer from Alzheimer’s disease is a question that isn’t easily answered.

Dr. Jarrod Carrol, who has worked with the Southern California Permanente Medical Group since 2016 at Kaiser Permanente West Los Angeles Medical Center, doesn’t have the answer to how many Blacks in L.A. have Alzheimer’s.

“It will be difficult to accurately capture the number of persons in L.A. County that have the diagnosis of dementia because it is so often missed or delayed,” Carrol said. “African Americans are two times and Hispanics 1.5 times more likely to have Alzheimer’s disease or other dementias than whites.

“Genetic differences do not appear to account for large prevalence differences. Higher rates of cardiovascular disease and diabetes are associated with an increased risk for Alzheimer’s and other dementias. Lower levels of education, higher rates of poverty and greater exposure to early life adversity and discrimination increase risk.”

Dementia is a general term for loss of memory and other mental abilities severe enough to interfere with daily life. It is caused by physical changes in the brain. Alzheimer’s is the most common type of dementia, but there are several other kinds.

In March, the Journal of the American Medical Association’s findings support Carrol’s evaluation. They asked the question: Is race/ethnicity associated with timeliness of dementia diagnosis and comprehensiveness of dementia diagnostic workup?

Their findings concluded that among a cross-sectional study of 10,472 California Medicare fee-for-service beneficiaries, Asian, Black, and Hispanic beneficiaries were less likely than white beneficiaries to receive a diagnosis of incident mild cognitive impairment vs. dementia.

That means a lower likelihood of an early diagnosis of dementia and comprehensive diagnostic workup among beneficiaries from racial/ethnic minority groups highlights key areas for public health interventions to reduce health disparities among older adults.

Those findings emphasize significant disparities in the timeliness and comprehensiveness of dementia diagnosis. It noted that public health interventions are needed to attain equitable care for people living with dementia across all racial/ethnic groups.

Earlier this year, the Alzheimer’s Association released its 2021 Alzheimer’s Disease Facts and Figures report which disclosed that discrimination is a barrier to Alzheimer’s and dementia care.

 The report offers a comprehensive look at the latest national statistics on Alzheimer’s prevalence, occurrence, mortality, costs of care, and effect on caregivers.

 More than one-third of Black Americans (36%) are convinced discrimination would be an obstacle to receiving Alzheimer’s care. In addition, half or more of non-white caregivers say they have experienced discrimination when traversing health care settings for their care recipient.

Findings in the report reveal that non-white racial/ethnic populations expect and experience more barriers when accessing dementia care, have less trust in medical research, and are less confident that they have access to health professionals who understand their ethnic and racial background and experiences.

Among the findings: Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias.

“There can be a variety of reasons for this startling data point,” Carrol said. “Missed and delayed/late diagnosis which is more common in minority populations can lead to further mistrust of the health care system which impacts the overall care.”

Carrol said resource availability and allocation is also a factor.

While Medicare attempts to address the financial barrier to care for persons over the age of 65, disparities continue to exist in minority populations because the elders are less likely to have additional private insurance and more likely to receive Medicaid or only have Medicare,” Carrol said. “Medicare does not cover all medical needs like prescription drugs, dental care and long-term care and it imposes various out-of-pocket medical expenses: an annual deductible for some care, copayments on physician charges, and payment for one day of inpatient care.

“These expenses may represent a substantial burden for low-income older adults and minorities are generally more affected because of lower household incomes.”

Nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color. Only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally regardless of race, color, or ethnicity.

Fewer than half of Blacks (48%) feel confident they have access to providers who understand their ethnic or racial background and experiences.

 Black Americans have less interest in clinical research trials to prevent or slow the progression of Alzheimer’s disease.

The most common reason cited for not participating in clinical trials among all racial/ethnic groups is not wanting to be a “guinea pig.” This sentiment was especially strong among Black Americans (69%). In addition, almost half of Black Americans (45%) worry that treatments might cause sickness.

“The research infrastructure and those who make it up need to work on how they engage in the community,” said Dr. Cerise Elliott of the National Institute on Aging. “It’s a lot of time needed in relationship building. They need to improve on their messaging.”

The report went on to state that health and socioeconomic disparities and systemic racism contribute to amplify Alzheimer’s and dementia risk in communities of color.

“Data suggests that racial and ethnic minorities face various challenges in having access to medical care in the United States,” Carrol said. “Limited access impacts community health and can have devastating long-term outcomes. As a result, the health care community has to be more intentional in their outreach efforts in order to connect with and improve overall community health.”

Dr. Nadine Diaz of the USC Keck School of Medicine Alzheimer’s Disease Research Center, said there needs to be more emphasis in medical schools when it comes to understanding the socio-economics of people of color.

“There is a cultural sensitivity that is lost,” said Diaz, a geriatric social worker. “When it comes to health and medicine, we are lacking. We need to train health providers to make them aware of what’s happening.

“There needs to be a sense of understanding people of color. There really needs to be a sense of compassion and understanding. What we can do is advocate for support and respectfully demand the same medical support so we have a quality of life.”

“We are constantly navigating this brutality of racism,” said Emnet Gammada, Ph.D., a clinical gero-neuropsychology fellow at the UCLA Semel Institute for Neuroscience and Human Behavior. “You feel it in your body. It’s the heavy weight that you carry.

“We are looking at what has allowed us to rise despite all the systems that have been against us. What we know in the literature is that Black people are disproportionately affected. Structural racism profoundly shapes who gets the disease through differential access of goods and services and opportunities — by racial groups. It’s an inherited disease but it’s also inherited disadvantages that we’re born into.”

Gammada added: “Those issues also shape who gets dementia.”

“When we talk about structural racism and the ways that it attacks us we can contextualize it,” she said. “There are studies that show the structure in which we’re embedded, also pre-disposes us to the conditions.”

Gammada said how the racial wealth gap concentrates poverty within communities of color, is also a factor.

“The way in which toxic stress and exposure increases one’s cortisol drives your allostatic load to violently age your cells in your body,” said Gammada, who is engaging the Black community in a venture called The Black Joy Project. “The cellular age is more advanced than your chronological age. The toxic stress you’re constantly in violently ages your body. Blacks don’t crack, but the cells are aging.”

Petra Niles, a senior manager for African American Services, Education and Dementia Care Networks of Alzheimer’s LA, said social determinants like where someone lives, works, plays and their overall lifestyle really matter.

“The access to care is an interesting point because sometimes you have someone who has access but doesn’t go to their physician,” she said.

“Health care systems should devote attention to the development of effective strategies, such as cultural competence training to help curb the impact that Alzheimer’s and other dementias are having on communities of color,” Carrol said. “The health care community must acknowledge the historic impact and work to build bridges to connect with the community through alliances and outreach efforts. Start with listening then partnering with the community to empower them to improve their health and health care.”

“There are things Black people can do regardless of things like structural racism,” said Dr. C Freeman, a board-certified geriatric psychiatrist and former president of the Los Angeles County Medical Association. “We have to advocate for ourselves and take care of ourselves. It needs to start early. We need to change our lifestyle, exercise and eat well. Take care of yourself. That’s a start.”

This article was produced as a project for the USC Annenberg Center for Health Journalism California Fellowship.

Part three: The importance and role of caregivers for Alzheimer’s patients. Plus, health professionals weigh in on the new drug aducanumab (Aduhelm). It’s the first time in 18 years, the U.S. Food and Drug Administration has approved a new treatment for Alzheimer’s disease. 

Darlene Donloe is a freelance reporter for Wave Newspapers who covers South Los Angeles. She can be reached at ddonloe@gmail.com.

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