As former first lady Michelle Obama recently said, “Our stories matter.” It is why I spent three years making a documentary on Alzheimer’s impact on the African-American community. My film, “In Our Right Mind, Alzheimer’s and Other Dementias’ Impact in Communities of Color,” tells the story of retired Master Sgt. Ulus Crowder and others who are living with Alzheimer’s. African Americans and Hispanics are at twice the risk as whites for this fatal, incurable disease.
Mr. U, as his friends called him, would have been 88 this Thanksgiving. He died last week, not from Alzheimer’s, which he battled for 18 years, but from COVID-19.
I did extensive research for the film, so while I was saddened to see COVID-19’s devastating impact on communities of color, I was not surprised.
The reasons are manifold — diabetes, heart disease and hypertension, which are more common in communities of color, are contributing factors for increasing the severe effects of COVID-19 and they are also risk factors for neurocognitive disorders like Alzheimer’s.
Concerning COVID-19, Dr. Lisa Cooper, the director of the Johns Hopkins Urban Health Institute, says inequities in socio-economic status, living conditions, and access to care in the U.S. are contributing factors causing people of color to experience this pandemic in a different way. For example, people of color are represented as front-line workers being more exposed to the virus, more likely to travel on public transit and more likely not to have health insurance or access to regular medical care.
It is no coincidence that in the midst of a pandemic, issues of racial injustice are at the center of protest and unrest — the most intense we’ve seen in generations. Long-simmering inequality across the spectrum coupled with the latest instances of police brutality have us at a boiling point.
Indeed, police brutality is a public health crisis in the Black community. And like other disparities of health, income and education, they are rooted in institutional inequality and systemic racism. These issues do not lend themselves to easy solutions, but when it comes to COVID-19 there are things we can do.
We must continue to demand universal testing. Testing gives us data that lets us know where the need is greatest so policies can be tailored to meet the specific needs of those most at risk.
We know that nursing homes and long-term care facilities are a virus hotbed. Almost half of the deaths of elderly people in this country have been at nursing care facilities. I am the director of a legal non-profit, the SeniorLAW Center in Pennsylvania, which seeks justice for older people. As we learn more about what is taking place in these facilities, the stories of neglect will be this nation’s shame.
Not only is testing needed but protocols must be put in place for communications and outreach for families who play a crucial role in the psychological well-being of long-term care and nursing facility residents. Before coronavirus, a 2018 AARP foundation survey revealed that one-third of older adults in the United States are socially isolated, which increases health risks like heart disease and diabetes.
We must share the stories of successful grassroots coalitions that have earned the community’s trust and are moving the needle in meeting the needs of underserved populations. Across the country we’ve seen doctors join forces with the faith-based community to provide virus testing and other services.
The church’s role as a trusted institution for delivering a message of health is not new. More than 100 years ago the public health system reached out to Black churches in an effort to improve the health of Black Americans. It was called the National Negro Health Movement and was credited with making significant strides in improving health in Black communities.
These best practices could be helpful in bringing awareness and education to communities around Alzheimer’s and underlying health conditions.
While church-community collaborations are important, the government can’t abdicate its responsibility. We need federal and state legislation as well as increased funding. A potential revenue source may come from reducing the behemoth budgets of local police departments. Redirecting some of that money into community programs would make a huge difference in local health and social services.
Finally we must continue to tell our stories. Ulus Crowder retired from the military as a master sergeant. He survived multiple tours of duty, first in Korea and then in Vietnam. As a Black man in America whose life expectancy is the shortest among all racial groups, he beat the odds by more than a decade. He even managed to survive one of Alzheimer’s dangerous side-effects. In our film, his daughter Chanel talks about how her Dad would often wander. One evening he disappeared only to be found at 5 o’clock the next morning, miles from home, on one of Baltimore’s most dangerous streets. He survived all of this but could not survive COVID.
Our stories are important and can serve as the inspiration for change.