HHS must act boldly to help African-Americans fight Alzheimer’s disease

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.

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.