In 2005, during his first year of graduate school at the USC Suzanne Dworak-Peck School of Social Work, Bryan Gaines, BA ’03, MSW ’06, DSW ’18, received a phone call from his aunt. She told him his father, with whom he had no relationship, had been diagnosed with Alzheimer’s disease, required 24/7 care and needed to be picked up—she was going to Las Vegas.

Immediately, Gaines’ life changed. Despite the fact that he and his father were estranged, he had been raised in a community where elders were respected and felt it was his responsibility to take control of his father’s care. “It really changed the course of my work, everything I was doing,” Gaines said. “Because I had to better understand how to take care of him, although he was never a part of my life. But this was my father.”

Gaines became a caregiver overnight, and because of this he chose the Alzheimer’s Association, California Southland Chapter, as his second year field placement for his Master of Social Work (MSW), with an emphasis in geriatric social work. This allowed him to integrate his new responsibilities with his studies. He quickly learned about all the disparities and gaps in understanding for African Americans and this disease, and that care facilities were not culturally sensitive to the needs of his father.

So, he started his own.

The year after earning his MSW, Gaines developed a program and opened a facility, licensed by the state of California, to provide Alzheimer’s care for six people, including his dad.

“I created a state of the art facility for people with Alzheimer’s in the heart of the hood in South Los Angeles, named Mel’s Memory Care in honor of my dad,” Gaines said. “That had never been done before.”

Mel’s Memory Care also provided a resource center for people in the community to get information and a place for interns to engage and interact with people living with the disease.

Gaines eventually hired an administrator to oversee Mel’s Memory Care, and took on the position of Director of Professional Training at the Alzheimer’s Association. For him, it was thrilling to have started as an intern there, and then return as a director. There he was able to build training programs for physicians, nurses and care facilities.

Building a program for elderly African Americans

In 2011, while presenting at a mental health conference, Gaines met Karen Lincoln, associate professor at the USC Suzanne Dworak-Peck School of Social Work and director of the USC Hartford Center of Excellence in Geriatric Social Work. Lincoln’s scholarship focuses on mental health and wellbeing for African Americans.

The two began discussing the notion of creating a program for elderly African Americans.

That program became a reality in 2014. Gaines left the prestige and security of his director position with the Alzheimer’s Association to serve, initially, as co-chair and project specialist for Advocates for African American Elders (AAAE), housed within the USC Edward R. Roybal Institute on Aging. Today, working almost exclusively on Lincoln’s research projects and implementing the majority of the community-based outreach required, he serves as assistant director of AAAE and assistant director of the USC Hartford Center of Excellence in Geriatric Social Work.

Working with older adults has been eye-opening and very rewarding for Gaines. “In just sitting down and talking to them, there’s such a wealth of knowledge and learned experience. They actually guide all the work that we do,” he said. “We find out directly from them how we should be doing this. All of these things that we learn from them is such a wonderful opportunity for reciprocity.”

BrainWorks

AAAE launched the BrainWorks research study to promote Alzheimer’s disease (AD) literacy within the African-American community. The study aims to help individuals identify AD symptoms and encourage them to seek help from a physician or mental health provider.

Using focus groups, Gaines and Lincoln designed curriculum for AD literacy using their talk show model to deliver information to study participants. They learned from participants how they wanted to be informed, and what they needed to know. Lincoln also introduced culturally tailored text messaging as part of the program.

“There's no cure for Alzheimer’s, and other dementias, so the best chance that we have is to look at risk reduction,” Gaines said. African Americans are at a significantly higher risk than whites of developing Alzheimer’s disease and they report lower levels of AD literacy.

Chronic health conditions such as high blood pressure, high cholesterol, diabetes, obesity, lack of sleep and cigarette smoking are all culprits that can lead to Alzheimer’s disease later in life. Gaines’ passion is to work directly with the community to help them understand the risks and how those can be reduced through healthy lifestyle changes.

“A lot of times my credibility comes from sharing my story,” Gaines said. When he turned 40, he was 290 pounds and his doctors told him they were going to start him on high blood pressure and high cholesterol medication.

“It was never any conversation about if you get the weight off of you, you reduce the risk of having high blood pressure and you might not have to take medication,” Gaines said. It was not until his father was diagnosed with AD and he started working in the field that he realized the risk factors for himself.

“This is something I’m able to share with people in the community who are struggling,” he said.

Be Mindful-Be Well

In 2018, Gaines earned his Doctorate of Social Work (DSW). For his capstone project, he created an interactive brain health education, exercise and health-protective behavior program designed for African Americans over 45.

Be Mindful-Be Well uses a similar talk show model to BrainWorks to engage and educate participants, then a six-week boot camp to raise awareness and increase knowledge about the risk for Alzheimer’s disease and improve overall health. As part of the program, he designed a maintenance system using coaching and a buddy system, weekly sessions and exercise, a six-month follow-up plan and a brain health champion graduation.

For Gaines, it is the next phase in getting the community engaged.

“Working with older adults, it’s really a ministry for me,” Gaines said. “As a Christian, this is what God put on my heart, the area that he wanted me to focus on and I’ve been doing it all my life.”