Former model and restaurateur B. Smith is a likely representation of life with Alzheimer’s disease. Beyond the gasps over Smith’s home life — she lives with her husband and his live-in girlfriend — her situation points to real-world challenges faced by black families caring for loved ones who have this life-altering condition.

Alzheimer’s is a public health crisis for which Congress has thankfully put aside its differences long enough to pass the Building Our Largest Dementia Infrastructure for Alzheimer’s (BOLD) Act. Now the question is whether the money and resources directed toward African-Americans, a group disproportionately affected by Alzheimer’s, is bold enough.

The act authorizes $100 million over five years and directs the Centers for Disease Control and Prevention to create a public health infrastructure to combat Alzheimer’s disease. This funding will go a long way to increase early detection and diagnosis, reduce risk, prevent avoidable hospitalizations, assist caregivers, and support care planning for people living with the disease.

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As a caregiver of a parent with dementia, an associate professor who provides Alzheimer’s education to underserved communities, and an advocate for increased support for those living with Alzheimer’s, their families, and caregivers, I wholeheartedly support the idea of a nationwide Alzheimer’s public health infrastructure. I also know there is reason to be concerned about whether this funding makes it into every community that needs it.

Previous federal funding to support Alzheimer’s prevention efforts went to influential organizations like the Alzheimer’s Association and the CDC, whose awareness efforts have fallen flat when it comes to reaching African-Americans. In fact, African-Americans still have the lowest level of basic knowledge about Alzheimer’s, have few trusted sources of information for it, and have the highest risk of the disease in the United States.

Alzheimer’s affects more than 5.7 million Americans and represents the fifth-leading cause of death among older adults. It has no cure. Barring breakthroughs in preventive therapies, the prevalence of Alzheimer’s will escalate rapidly over the coming years as the number of older Americans continues to grow. By 2050, the number of people with Alzheimer’s is expected to reach 13.8 million, costing the country more than $1.1 trillion a year.

But Alzheimer’s isn’t an equal opportunity disease. African-Americans are afflicted with Alzheimer’s disease at three times the rate as whites. It is the fourth-leading cause of death for African-Americans. While Alzheimer’s deaths increased by 55 percent among all Americans between 1999 and 2014, they increased 99 percent for African-Americans.

Some of the BOLD funding will go to public and nonprofit private entities such as state, tribal, and local health departments, as well as to associations and universities, under so-called cooperative service agreements. These agreements require entities that receive funding to establish or support regional centers to address Alzheimer’s disease and related dementias. It’s up to each entity to describe how it will accomplish this.

As part of cooperative service agreements, the secretary of Health and Human Services has the discretion to “give preference to applications that focus on addressing health disparities, including populations and geographic areas that have the highest prevalence of Alzheimer’s disease and related dementias.”

The CDC, along with many health care systems, now recognizes the myriad social factors that influence health and disease. Poverty, unemployment, poor education, lack of access to quality health care, substandard living conditions, food insecurity, and environmental hazards, along with the health behaviors influenced by these factors, determine the conditions under which people are born, grow, live, work, and age. Poor sleep and chronic health conditions like diabetes, high blood pressure, heart disease, obesity, and chronic stress are not only risk factors for Alzheimer’s but are linked to these social determinants of health. They are also more common among African-Americans than whites, which may help explain the differences in rates of Alzheimer’s among these two groups.

Is the BOLD Act really bold? Bold means fearlessness, confidence, courage, and showing an ability to take risks. The HHS secretary has an opportunity to act that way by doing something Congress didn’t do — mandate that representatives from underserved communities be part of the decision-making process. People from small human service agencies, churches, community health coalitions, and community organizations must be involved in deciding how Alzheimer’s funds are allocated.

By focusing on the community as the center of efforts to address disparities — efforts that will complement those of the larger public and private sector — organic community groups can help design the infrastructures that are not only relevant to communities but are also sustainable for them.

Acknowledging the importance of diversity and inclusion for leveling up the health outcomes of disadvantaged communities will move the country forward in its fight against Alzheimer’s. That, indeed, would be a bold act.

Karen D. Lincoln, Ph.D., is an associate professor of social work at the University of Southern California, director of the USC Hartford Center of Excellence in Geriatric Social Work, founder and director of Advocates for African American Elders, and an Encore Public Voices Fellow.

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  • Right now, today, people in 33 states can get help with symptom relief: cannabis helps dementia. Not just symptoms. Check out this week’s article in Forbes and the Frontiers in integrative Neuroscience Article about Cannabis Therapeutics and the Future of Neurology from 10/2018. My mom lived with dementia for nine years before passing 2/1/2019. Cannabis helps dementia.

  • Thank you for you comment, Mark Thorson. Unfortunately, there is no error in interpreting the data. There are a plethora of reports and studies documenting Alzheimer’s disease prevalence rates between 14% to 500% higher among African Americans than among Whites. Absurd figures, but unfortunately true. I selected one citation, but there are many others. Here is a handy report from HHS. https://aspe.hhs.gov/report/racial-and-ethnic-disparities-alzheimers-disease-literature-review. However, the most frequently cited studies do report that the rates for African Americans are 2-3 times that of whites. This is a sad reality that, rather than being disputed, should be addressed. I am happy to say that many of us who are seeing these figures play out in our communities are committed to raising awareness and garnering support in as many ways as we can.

    • Unfortunately, there is no error in interpreting the data.

      If there was no error, perhaps you could explain how you came up with the figure of a factor of 3 from the Kaiser study. It sure looks like you simply took the difference between the relative incidence of AD in blacks and whites as compared to Asians and rounded to the nearest integer, which is 3. But perhaps you had some other method.

      The Kaiser study doesn’t provide a direct comparison between the relative incidence in blacks and whites, but we can calculate it from the numbers they do provide. In this study, blacks had 1.73 times the incidence of Asians, and whites had 1.25 times the incidence of Asians. To compare blacks and whites, we can divide 1.73 by 1.25. This gives a relative incidence of 1.38. That is a far cry from a factor of 3. Even without doing any arithmetic, it should have been obvious that the Kaiser study does not support a factor of 3 because the group with the highest incidence (blacks) had a relative incidence of 1.73 compared to the group with the lowest incidence (Asians). Comparing blacks to any of the other groups (all of which have a higher incidence compared to Asians) must result in a lower difference than comparing blacks to Asians.

  • “African-Americans are afflicted with Alzheimer’s disease at three times the rate as whites.”

    How come?

    And also, was this happening to people back in the old days? Like the 60s, 50s, 40s, etc…or were people not living long enough to experience it yet? I really wonder why this is increasing like it is.

    • aem,

      This appear to be an error in interpreting the data. Go to the paper cited in the article, and you’ll see that it reports the relative incidence (as compared to the lowest risk group, Asian Americans) is 1.73 for blacks and 1.25 for whites. That is about 3 times difference in the relative incidence, as compared to Asians. It is not 3 times the incidence in blacks vs. whites.

      To put it another way, imagine if the relative incidence in whites was only 1.01 times the incidence in Asians. In that case, the paper would have said that blacks get AD at 73 times the incidence in whites — a clearly absurd figure.

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