Sunday’s service at Grant African Methodist Episcopal Church in South Los Angeles will be different from usual. The choir will limit its set list to familiar spirituals such as “Amazing Grace” and “Take My Hand, Precious Lord.” The ushers will sport name tags with enlarged type. A quiet room has been prepared as a retreat in case any of the congregants becomes agitated or confused.
The changes are intended to make the church more welcoming to congregants with cognitive decline, according to the church’s minister, the Rev. Timothy O. Coston Jr. “We’re looking at the entire service being dementia-friendly,” he said. The service will stick to familiar hymns and liturgy to provide comfort for those whose memories may be fading.
“I want to strip it down to basic prayer and a simple message,” he added.
Coston said he also wants the service to inform. A pile of informational brochures with facts about Alzheimer’s disease sits on a table by the entrance, and the pews have been furnished with hand-held fans that contain the message, “Black Americans are about 2 times as likely as White Americans to have Alzheimer’s and other dementias.”
That startling statistic about the disproportionate rate of Alzheimer’s disease among older Black Americans comes from the Chicago-based Alzheimer’s Association, which provided the fans. Blacks also have the highest rates of death from Alzheimer’s disease and other dementias, according to the California Department of Public Health. The Los Angeles County Department of Public Health projected that the diagnosis of Alzheimer’s in Black residents will grow by 153% between 2019 and 2040.
The Black community also has a vital asset it can access to support families affected by dementia: the Black church. That was the insight of Fayron Epps, a professor of nursing at University of Texas, Health San Antonio and Emory University, who launched Alter Dementia in 2019 to help congregations make their services more welcoming to those with cognitive decline and their families. The program has taken root in the South. Nationwide, more than 80 churches offer dementia-friendly services, said Adrianne Jones of Alter Dementia.
Now, two South Los Angeles churches, Grant AME and Normandie Church of Christ, have become the first California churches to partner with Alter Dementia. Services designed to welcome dementia patients begin Saturday and Sunday.
About 719,700 Californians 65 and older live with Alzheimer’s disease, the largest such population in the nation, according to the Alzheimer’s Association. Los Angeles County is home to 190,300 Alzheimer’s patients, the greatest concentration in the country. Research has not been able to explain the disproportionate rate of the disease in the Black community. But historic and ongoing marginalization of Black Americans has produced disparities in life expectancy, socioeconomic factors and health, according to the Alzheimer’s Association.
Dementia is an umbrella term for symptoms of a brain disease caused by damage to nerve cells. It initially attacks the parts of the brain responsible for language, memory and thought. Alzheimer’s disease is a form of dementia caused by the build up of certain proteins and other damage to neurons. Alzheimer’s is the most common form of dementia, but dementia patients typically have multiple forms of the brain disease. There is evidence that drug treatments can slow cognitive decline, but there is no cure. Nondrug treatments, such as physical exercise, memory exercises, art and music therapy and a healthy diet, may help maintain cognitive function.
Allowing Alzheimer’s and dementia patients and their caregivers to remain churchgoers is a core component of Alter Dementia’s mission. Withdrawal from social life, often stemming from mobility loss or increased anxiety, is a warning sign of Alzheimer’s and other dementias, according to the Alzheimer’s Association. And cognitive decline can worsen when a patient ceases to participate in familiar activities such as church, Epps said. For caregivers, isolation coupled with the burden of constantly caring for a loved one can lead to depression.
“Routine is key,” Epps said.“If you take someone out of their routine, they become confused. If they’ve attended church all their life, it is a loss.”
For Alzheimer’s and dementia patients, attending church can create what researchers call paradoxical lucidity; moments of clarity despite diagnosed cognitive decline, Epps said.
When Epps learned about the disproportionate effect of dementia on Black people 10 years ago, she realized she didn’t know enough as a nurse to support both dementia patients and their caregivers. Now, she is a nursing professor and principal investigator with the Emory University-based Faith Village Research Lab, which provides research and education on Alzheimer’s disease and other dementias to African American and faith communities. She said she made it her mission to interview, survey and learn from families affected by dementia while earning her doctorate. In 2018, she was asked to present her research to a minister in Georgia. But that wasn’t enough.
“He didn’t know how to apply the education,” Epps said. “We had a gap.”
Her effort to fill that gap led to the founding of Alter Dementia, which helps churches develop programs that help congregants affected by the diseases. Alter Dementia provides churches with educational materials, offers free memory loss tests and identifies support to give caregivers respite. The organization also provides recommendations to make services shorter and more accessible to those with cognitive loss.
Church attendees skew older than the population as a whole. Epps said that 40% of screened congregants exhibit signs of memory loss. She often makes referrals to doctors specializing in the treatment of Alzheimer’s disease and dementia. Epps is working on a pilot program to ensure doctors accept those referrals.
Supporting members of the Black community with cognitive decline requires a nuanced and culturally appropriate approach, according to Epps. The Black community has historically faced discrimination and bias in the health care system, leading to skepticism of health care practitioners. Epps is also attempting to reach people in low-income and rural communities who face additional barriers to accessing health care. “We need to go to where people gather and not expect them to come to us,” Epps said.
“The Black Church, across the country, is the most valued institution in Black communities,” said Adrianne Jones, who oversees Alter Dementia partnerships in California and two other states. “Many, if not all, of our civil rights leaders came out of the church. We know Black faith leaders have a lot of power.”
Last year, Jones traveled from Atlanta to L.A. to speak at the Faith & Health Luncheon, an annual event organized by Petra Niles, who leads African American outreach and education for Alzheimer’s Los Angeles, a local medical advocacy group. There, Jones was approached by Lessie Thompson, a church staff member who also works for the national AME church organization. Jones returned with Epps to South Los Angeles in March to meet with Thompson, Coston and Tia Delaney-Stewart, director of diversity, equity and inclusion at Alzheimer’s Association California Southland Chapter.
Coston was surprised that, after a typical two-hour church service, nearly half the attendees stayed to listen to Jones and Epps, ask questions about Alzheimer’s and participate in a survey of congregants.
“For me, as a pastor, it let me know Alzheimer’s and dementia is affecting my congregation more than I knew,” Coston said. “It was a red flag of its impact.”
Still, it was not hard for Coston and Thompson to identify congregants affected by dementia. Recently, a member of the choir sang and later had no memory of it.
Thompson’s best friend, whom she identified only as Jackie, lost her husband, a University of Southern California professor, to Alzheimer’s. Jackie became his caregiver as their health insurance did not cover the cost of day-to-day support.
In Coston’s second-floor office, a watercolor painting of fishermen hangs next to a portrait of Richard Allen, founder and bishop of the African Methodist Episcopal Church. The painting was a gift from a Bakersfield family who once attended Grant AME, even though the family lived more than 120 miles away. The adult daughter would sometimes cry with Coston when she talked about caring for her mother, who had dementia.
When Coston visited the family in Bakersfield, the mother would regularly point to a photo of Coston’s father, who had been her minister. Every five minutes, Coston recalled, she would ask, “Did I show you a picture of my friend?”
The painting of the fishermen on his wall reminds Coston of her and the work that still needs to be done to help those in his parish with dementia.
“We need the church to step up,” Coston said.
