There is a brutality, to borrow a term from a doctor, to Alzheimer’s in Black communities. In California the rate of Alzheimer’s is highest among African Americans. Alzheimer’s care costs Black families in Los Angeles more than other groups.
So an annual gathering in South Los Angeles of Black church leaders, doctors, representatives of government agencies and African American caregivers to discuss Alzheimer’s would seem dispiriting. There was prayer. There was networking. Even exercise. But I left with hope, having witnessed a model that may help Alzheimer’s patients and caregivers find support — financial, medical as well as social.
Los Angeles County is an epicenter of Alzheimer’s among African-Americans, according to the Alzheimer’s Association. California is home to the largest number of people diagnosed with Alzheimer’s. California may also offer the nation new direction in treatment and caregiving for Alzheimer’s patients.
For the past 15 years, Petra Niles, of Alzheimer’s Los Angeles, has organized the Faith and Health Luncheon to directly connect Black churchgoers and African American caregivers with the various organizations that offer support for Alzheimer’s patients and their caregivers.
African Americans must often leave their neighborhoods to see specialists and clinics at places like the University of California, Los Angeles, and the University of Southern California. If a patient cannot drive themselves (sometimes because their driver’s license has been taken away), then a caregiver might need to take time off work to drive them. Fewer than half of Black Americans report feeling confident they can access culturally competent care for Alzheimer’s, according to the Alzheimer’s Association.
The Faith and Health Luncheon demonstrates growing interest and trust in this bridge between disease, care and support. More than 300 people attended this year’s luncheon at West Angeles Church of God in Christ, a Pentecostal megachurch in South Los Angeles’ Crenshaw neighborhood, on May 16. Last year, there were 200 at a different church. When Niles first launched the event, there were only 20 people.
Attendees should leave with hope and agency, Niles said, rather than feeling bludgeoned by the statistics.
Black Americans are twice as likely as their white peers to have Alzheimer’s, according to the Alzheimer’s Association, a Chicago-based national medical advocacy organization. Alzheimer’s disease is a form of dementia caused by the buildup of certain proteins and other damage to neurons in the brain. About 720,000 Californians 65 and older live with Alzheimer’s disease.
The Faith and Health Luncheon aids African Americans through the Black church, a trusted community institution.
Just past the entrance of the glass lobby of West Angeles Church, representatives of government agencies and research groups sat ready to speak. From the California Department of Motor Vehicles, a woman explained how an Alzheimer’s diagnosis impacts driving privileges and requires driver testing. A representative for the California Department of Financial Protection explained how to safeguard elderly people from fraud. A state representative guided applicants through California’s paid family leave for caregivers.
Faith leaders from six different Christian denominations attended and offered words of hope and prayer. A faith leader encouraged attendees to “love on, not deal with” family and friends with Alzheimer’s. An exercise instructor led those gathered in stretches and minor exercises. Simple movement strengthens the mind against Alzheimer’s, Niles said. UCLA gerontologists explained how stress affects the body’s nervous system and contributes to cognitive decline.
An attendee later contacted one of those gerontologists, Emnet Gammada, Ph.D. The individual has a mild cognitive impairment diagnosis and asked to get into her clinic for testing, Gammada explained. The patient is educated, professionally accomplished and still had trouble navigating their own health insurance for aid, Gammada added.
Nine other attendees contacted Gammada after the luncheon. Some want to understand if they have a fatal disease, Gammada said, or otherwise sought advice: Could she recommend a trusted neurologist?
Gammada repeatedly uses the word “brutality”: the brutality of the high rates of Alzheimer’s diagnosis and death; the brutality of a medical system that has not adjusted to the needs of patients with cognitive disease; the brutality of racist experiences in the examination room.
Nationwide, half of Black Americans say they have experienced discrimination while seeking care for someone living with Alzheimer’s, according to the Alzheimer’s Association.
In the face of that brutality, calls from attendees signal that the Faith and Health Luncheon is working, Gammada said.
Petra Niles said there is no reason why the Faith and Health Luncheon cannot be replicated.
When I shared the sense of awe and feelings of hope that I felt leaving the luncheon, Niles said that should be the goal of all Alzheimer’s conferences.
“If everyone leaves feeling hopeful, having learned, then you’ve done what you need to do,” said Niles.
