Alzheimer’s disease and other forms of dementia do far more than affect memory. As these conditions progress, they can change a person’s ability to communicate, make decisions, and manage everyday activities. They also place an enormous emotional, physical and financial burden on families and caregivers. Although dementia touches people in every community, its effects are especially serious for African Americans. The Alzheimer’s Association states that African Americans are twice as likely as white Americans to develop the disease.
That increased risk is compounded by obstacles that can delay diagnosis and support. African American families may mistake early memory changes for normal aging, struggle to find accessible resources, or hesitate to seek help because of stigma and mistrust of health care systems and medical research. When those barriers prevent people from receiving an early evaluation, families can lose valuable time to plan, explore treatment options, and connect with services.
The University of Pittsburgh’s Alzheimer’s Disease Research Center (ADRC) is working to change that. Led by Dr. Oscar Lopez, the ADRC is a nationally recognized center dedicated to advancing research, improving early detection, developing effective treatments, providing education and raising awareness about Alzheimer’s disease and related dementias.
One of the ADRC’s key strengths is its commitment to community engagement, ensuring that research opportunities are accessible and inclusive for individuals and families from diverse backgrounds. Through cutting-edge research and clinical studies, it works to identify risk factors, improve diagnosis, and accelerate discoveries that may prevent or slow the progression of dementia.
As the ADRC’s Director of Community Engagement, Melita Terry connects African American families, caregivers, and community organizations with education, support and opportunities to participate in research. Her work is part of the ADRC’s broader mission to improve early detection, advance treatments, and ensure that dementia research includes the communities most deeply affected by the disease.
“My role is to provide strategic leadership in community engagement for underserved and at-risk populations,” Ms. Terry said. “We have been very successful in tapping into our community to educate people about Alzheimer’s disease and other related dementias, providing access to programming and resources for caregivers, their loved ones, and the community as a whole.”
Connecting with people means more than just getting information out. “It is a relationship. Anyone working in community engagement must understand that it is not just about the initial interaction. It is an ongoing process. Even when someone is from the community, the work doesn’t end there, because there’s still trust that needs to be built.”
Establishing that trust as early as possible is vital to providing the best possible care and support when it matters most. “Early diagnosis allows families to plan, access support services, explore treatment options, and better understand what to expect,” Ms. Terry said. “Those early conversations and evaluations can make a significant difference.”
Although the ADRC is a research center, education and community outreach are central to its work. Ms. Terry’s days are never the same and may include workshops, presentations, conversations with caregivers, meetings with community partners, and discussions with people considering research participation. Without a diverse population in studies, researchers may not fully understand how Alzheimer’s affects different groups or whether new diagnostic tools and treatments will work equally well for everyone.
The research the ADRC conducts is more broadly available than people might expect. “We’re a hidden gem located in Oakland at Montefiore Hospital, where we offer a full, comprehensive diagnostic evaluation,” Ms. Terry said. “People who have no memory concerns, as well as those who feel they may be experiencing slight changes, can take part in our longitudinal research study. It is an observational study that can take place annually.
The research visit is about four and a half hours. Participants talk with different clinicians and may receive an MRI. They need a study partner—someone who knows them very well and can answer questions about their health, mood, and memory. Clinicians also conduct neuropsychological testing and use a multidisciplinary approach to determine whether there is a diagnosis.
“The value of being able to come in and have a brain checkup annually is phenomenal, just as we would receive a checkup for any other health issue in our bodies,” Ms. Terry said. “It is a great way for individuals to get information and support while also contributing to science.”
The ADRC’s outreach extends far outside the typical clinical environment. Ms. Terry created Soul Brain Sessions, a program combining brain-health education with line dancing. Exercise supports healthy aging, while dancing encourages movement, coordination, memory, and social connection. The sessions turn education into an active, welcoming community experience.
The center also collaborates with Alter Dementia, a national initiative that helps faith communities become more dementia-aware and supportive of caregivers and people living with the disease. The ADRC serves as the Pennsylvania site coordinator.
“Churches have always been trusted centers of support in African American communities, so they are uniquely positioned to help families affected by dementia,” Ms. Terry said.
Ms. Terry’s commitment is rooted in a personal sense of purpose and her own deep faith. After working at a telecommunications company for 18 years she decided to step away and enjoy some time off while considering the next step in her career. One morning around 5 a.m. a voice said, “Check your email.” When she did, she found a message from Dr. Renã Robinson, who saw an opening related to Alzheimer’s disease and immediately thought of her.
“I fit the bill for the job,” Ms. Terry said. “The only thing I had to learn about was Alzheimer’s disease.” She met with Dr. Jennifer Lingler, who hired her. And for Ms. Terry, it was for something far more important that just a job.
“I understand that this is my calling, to do this work, to heighten awareness and educate our community about Alzheimer’s disease,” she said. “I am here to deliver the message and help bridge the gap between academia and the community. I am honored. I am humbly grateful, and I do not take this assignment lightly. I love what I do.”
Her long-term hope is that Alzheimer’s disease will become a subject discussed without shame or fear in African American communities. She wants families to recognize symptoms earlier, know where to find help, and understand that their participation can shape the future of dementia care.
“My goal is to one day have Alzheimer’s disease normalized in the African American community,” Ms. Terry said, “so that it becomes part of a normal conversation and resources are accessible.
