Alzheimer’s disease and other forms of dementia can affect any family, but access to diagnosis, treatment and support is not equal across communities. For many African Americans, the path to care is complicated by limited access to health services, transportation, healthy food, reliable information, and trusted organizations.
Those barriers, according to Jennifer Thompkins, president of the Urban League of Greater Pittsburgh, can leave people living with symptoms of dementia without the evaluation or assistance they need.
“Because of a lack of access to health care or resources, people are either underdiagnosed or misdiagnosed or not diagnosed at all,” Ms. Thompkins said. She noted that chronic conditions such as diabetes, obesity and high blood pressure also disproportionately affect underserved communities, while food deserts and the lack of living-wage employment can make it more difficult for residents to protect their overall health.
Those challenges do not exist in isolation. A person may know that something is wrong but lack transportation to a medical appointment, be unable to take time away from work, or not know where an evaluation is available. Others may dismiss memory changes as ordinary aging or avoid seeking help because they are frightened by what a diagnosis could mean.
“You don’t know what you don’t know,” she said. “If you’ve never been diagnosed, if you’ve never been given a scan, if you’ve never had access to those things, you don’t know.”
Health equity also includes the conditions in which people age. Ms. Thompkins pointed to the displacement and decline of historically Black neighborhoods, where blocks that once supported active communities may now have only a few occupied homes. Older residents who remain can become increasingly isolated, especially when transportation routes, benefits, or nearby services disappear.
Even a change such as the loss of a neighborhood bus route can lead someone to remain at home more often, she said. That isolation can make it harder to obtain care and deprive older adults of regular social contact.
The Urban League has several programs that help address some of the conditions surrounding healthy aging. Its senior jobs program employs approximately 92 low-income adults age 55 and older. In addition to providing income, the program gives participants a reason to leave their homes, interact with others, and receive health information through enrichment activities.
The organization’s Family Support Centers also include senior programming, while the Urban League Guild provides health, wellness, advocacy and social activities for members ranging in age from their 40s to their 80s.
For Ms. Thompkins, the Urban League’s most important role may be serving as a bridge between health systems and the community. “We may not have the scans here, but we’re the trusted messenger,” she said.
That trust can help medical providers offer screenings, education, and referrals directly to people rather than expecting residents to find unfamiliar services on their own. Ms. Thompkins said health organizations should be strategic about appearing at established community events, where residents already feel comfortable.
“UPMC has done a wonderful job partnering with us for our annual Thanksgiving distribution and sharing health information during an event that impacts about 10,000 families,” she said. “Being present at those kinds of events to talk to people and conduct preliminary screenings is key.”
Outreach concerning dementia should not focus only on older adults. Younger family members may be the first to notice that a parent or grandparent is becoming forgetful, confused, or unusually irritable. Without education, they may not recognize those changes as possible warning signs or understand how to advocate for an evaluation.
Improving dementia care in the African American community will therefore require more than expanding clinical services. It will require bringing those services into trusted spaces, strengthening transportation and community connections, educating caregivers, and ensuring that families learn about help before a crisis occurs.
The goal is to give people not only information about dementia, but also the opportunity to act on it. That is where health care providers and community organizations can work together to turn awareness into earlier diagnosis, stronger caregiver support, and more equitable care.
“We have the people, we have the trusted message, and we have the trust of the community,” Ms. Thompkins said. “Now we need the information from such great partners so we can get it over to the people whom we serve.”
