Dementia, Alzheimer's have out-sized impact on Black community, leaders say

As senior pastor at Destiny of Faith Church, the Rev. Brenda Gregg often listens to the struggles of her congregants and offers support.

Sometimes, she hears about their troubles even before their doctors do.

“One of the things we believe that the church is a trustful entity in the neighborhood. Let’s use the pulpit to do something in terms of, they don’t have to know health, but they know, ‘hey, I see something, what do I see, can I help my people, and what can I tell them?’” Gregg said. “I happen to be in health care, but I can at least steer them, I can at least be with them, I can support the caregivers.”

Gregg and her church’s support are one facet of a growing network of assistance to help Black individuals deal with the impacts of dementia and Alzheimer’s on themselves and their families.

According to the Alzheimer’s Association, older African Americans are twice as likely to develop Alzheimer’s as older white people. Fifty percent of African Americans say they have experienced discrimination while seeking care for someone living with Alzheimer’s, and 65% say they know someone with Alzheimer’s or dementia.

At the second annual Pittsburgh Summit on Alzheimer’s & Dementia: A Collaborative Community Conversation for the African American Community, health care providers, policymakers and community members discussed the unique challenges caused by Alzheimer’s and dementia in the Black community.

Representatives from the Alzheimer’s Association Greater Pennsylvania Chapter shared statistics and updates on Alzheimer’s research, and caregivers and family members shared testimonials and hopes for the future.

“When we look at this disease, it’s a disease that impacts communities, whatever you define that as. It could be your household, your neighborhood, your faith community, your workplace,” said Clay Jacobs, executive director of the Alzheimer’s Association Greater Pennsylvania Chapter. “It starts with you running into an old friend and talking about what you’ve noticed going on with your spouse, parent, or loved one, talking with your physician, your preacher or pastor. It starts in those community conversations. With a disease like that, that’s the only way we’re going to make the difference we need.”

Impact of a ‘silent epidemic’

Dementia is an umbrella term for loss of memory and other thinking abilities that are severe enough to interfere with daily life. It includes Alzheimer’s and other conditions.

As the population ages, Alzheimer’s and dementia are becoming more prevalent, according to the Alzheimer’s Association, and both have an out-sized impact on the Black community.

Some factors that impact the risk of cognitive decline — such as education, diet, physical activity, cognitive or social engagement, sleep and environmental factors — can be exacerbated by socioeconomic inequalities.

The workload and stress of being a caregiver for someone with dementia can weigh on family members and is worsened when faced with obstacles from structural racism.

Dr. Margaret Larkins-Pettigrew, senior vice president and chief clinical Diversity, Equity and Inclusion officer with Allegheny Health Network, shared her own story of how dementia affected members of her family. She noted that 10 million or more women in the U.S. are either living with Alzheimer’s and dementia or taking care of individuals who are, and that 2/3 of the caregivers in this country are daughters.

She cited that Black patients and caregivers, as well as their pain, are not always taken seriously by doctors due to bias and racism.

“There is such a lack of early diagnosis for people who look like me,” she said. “My mother-in-law was told it’s normal, it’s part of you getting older. Men and women hear this every single day who are presenting with early signs, and they’re still told it’s a normal process, it’s OK.”

Larkins-Pettigrew noted that there is still distrust of the medical system in the Black community.

“We need to demand health equity, we need to demand social justice and use of data justice. If we can’t get there, how many of you are going to volunteer to be in a research study?” she said.

Melita Terry of the Alzheimer’s Disease Research Center at Pitt emphasized the importance of early detection and speaking to a doctor early. She recommended people reach out for an observational study at the center, where they can return each year to keep track of any changes and receive an included MRI screening.

“If your loved one is experiencing some changes, it is critical, I implore you to go see someone,” she said. “We know that this is a silent epidemic. Let’s take the information and education that is being provided to you, and make sure that we are change makers in our community so that we can beat the fight against Alzheimer’s disease.”

Help and support

Representatives from community organizations gathered also to share information about solutions and programs of assistance.

During a listening session, attendees talked about what might improve their community’s resiliency when dealing with dementia. Reaching out and training church leaders, offering respite and space for caregivers to recover, and working directly with community members when conducting research all were offered up as suggestions.

As a part of Project Destiny, Inc., the nonprofit she founded, and as co-chair of the Faith-Based Health Collaborative, Gregg says she tries to provide support and help for her congregation who may be intimidated by the process of seeking help from the health system.

“One of the things we try to say is that you’re not crazy, and whatever you’re feeling, take somebody with you, these are the questions that you want to prepare to be able to talk with your physician,” she said. “And know that there are resources around. There are resources all over Allegheny County, but people don’t know where they are or how to trust them.”

Diane Powell, a community educator with the Alzheimer’s Association Greater Pennsylvania Chapter, said the organization is working hard to overcome educational deficits and remove stigma around seeking help for the disease.

“Usually, the disease presents itself in a variety of different ways, but the most important message to get across to people is that if they notice any subtle changes in their thinking or behavior, that they don’t ignore that,” she said. “The best thing to do is to consult with a physician, and if you’re uncertain or unconfident about talking to a doctor, to bring a family member along with you.”