t’s time to stop side-stepping the obvious: In addition to affecting the lives of virtually all Americans in the coming years, Alzheimer’s disease will devastate communities of color. We must act with urgency and coordinated force today to prevent that from happening.
According to new data from the Centers for Disease Control and Prevention, Alzheimer’s deaths increased by 55 percent among all Americans between 1999 and 2014. But they increased 99 percent for African-Americans and 107 percent for Latinos. While striking, that’s likely to be an underestimate because some independent studies have found that Alzheimer’s deaths are underreported on death certificates by approximately six times because death is often attributed to more immediate causes, like pneumonia.
The CDC’s data highlight the acute challenges this disease poses for African-American and Latino communities, where this ever-worsening brain disease is growing disproportionately and where personal resources for fighting it are inadequate. In these communities, trust in medical institutions has been eroded by racism, low standards of care, and unjust past medical research practices.
Compared to whites, African-Americans are twice as likely and Latinos 1.5 times as likely to develop Alzheimer’s. A recent report by the University of Southern California Roybal Institute on Aging and LatinosAgainstAlzheimer’s found that the number of Latinos in the U.S. living with Alzheimer’s disease is projected to increase by 832 percent by 2060.
Even though Alzheimer’s is more common among Latinos and African-Americans, they are less likely to be diagnosed with the disease in a timely fashion than whites. That steals valuable time to plan care. Further, Latino and African-American families are less likely to recognize the symptoms and signs of Alzheimer’s and dementia than whites, punctuating the need for increased promotion of brain health and research engagement within these growing communities.
The federal Administration on Aging has estimated that, by 2030, minorities will make up close to 30 percent of the older adult population in the United States — a trend that could be devastating for a growing number of Latino and African American families, as the likelihood of developing Alzheimer’s doubles about every five years after age 65. As our society ages and becomes increasingly multiethnic, addressing Alzheimer’s across all racial and ethnic groups must be a public health priority for state and federal governments.
The CDC’s data also illuminate the impact that Alzheimer’s is placing on families and caregivers. According to the CDC, “Significant increases in Alzheimer’s deaths, coupled with an increase in the number of persons with Alzheimer’s dying at home, have likely added to the burden on family members or other unpaid caregivers.” That’s putting it mildly.
In 2016, informal caregivers provided over 18 billion hours of unpaid care for individuals living with Alzheimer’s or dementia, at an economic value of more than $230 billion. African-American and Latino caregivers have reported spending more time providing intensive care for loved ones compared to their white or Asian American peers.
We must work across federal agencies and independent organizations to address this crisis as we did with the polio epidemic in the 1950s, HIV/AIDS in the 1980s, and, more recently, diseases like Ebola and Zika.
Any national effort must be adequately resourced to match the tremendous challenge that Alzheimer’s represents for our communities and our economy. Our national investment in Alzheimer’s research and programming totals less than 1 percent of the $259 billion we spend on the disease in direct and indirect costs annually, with more than half of that borne by Medicare and Medicaid. For comparison, the United States appropriates nearly $5.4 billion to the National Cancer Institute for cancer research, even though Medicare and Medicaid costs are consistently higher for individuals living with dementia than with cancer or heart disease.
Alzheimer’s costs, which may rise to $1.1 trillion by 2050, have the potential to bankrupt our economy. This financial burden is made even worse by the emotional toll Alzheimer’s takes on families. According to national advocate Daisy Duarte, who cares for her mother with early-onset Alzheimer’s, “Alzheimer’s is devastating and certainly not something we planned for financially or emotionally.”
Thanks to bipartisan leadership, Congress passed a budget for fiscal year 2017 that included nearly $1.4 billion for Alzheimer’s research, a 40 percent increase from the previous year. While historic, that fell short of the $2 billion in annual funding that leading researchers say is needed to achieve the national goal of stopping Alzheimer’s by 2025. But the Trump administration’s budget request for fiscal year 2018 would cut NIH funding by nearly $8 billion, make deep cuts to prevention funding at the CDC, and eliminate vital initiatives at the Department of Health and Human Services aimed at increasing the diversity of the medical workforce, all of which would seriously hamper advances in Alzheimer’s disease.
This shortsighted view of public health will allow Alzheimer’s to thrive in the shadows, claiming lives and precious federal dollars that could be fueling innovations in workforce development, health, and education. We must take heed of the CDC’s latest data and address the Alzheimer’s crisis by increasing investments in Alzheimer’s breakthrough research and care support in 2018 and beyond. It’s essential that these efforts include a focus on addressing disparities in brain health affecting Latino and African-American families — a smart move for the economy and our public health.
David Satcher, MD, is a former U.S. surgeon general and the founding director of the Satcher Health Leadership Institute at the Morehouse School of Medicine in Atlanta. William A. Vega, PhD, is the executive director of the Edward R. Roybal Institute on Aging at the University of Southern California Suzanne Dworak-Peck School of Social Work. Both authors are board members of UsAgainstAlzheimer’s.