A community activist and long-term participant of the AADAPt study reflects upon her experience together with her daughter.
Community has been an important part of Leona Smith’s life ever since she moved to Oregon 70 years ago. Community engagement has also been a driving force of the African American Dementia and Aging Project (AADAPt), and one of the main reasons Leona enrolled in the study two decades ago. A former special education teacher, NAACP and Urban League volunteer, and long-term active parishioner at Maranatha Church of God in NE Portland, Leona volunteered for the study not only to support research and the African American community, but also to meet new and old friends.
“She really loved the coming together of the community,” says her daughter and caregiver Debbra Wallace. “She also wanted to help a study of the African American population, since there’s so little research that has been done in our community.”
Coordinated by the Layton Aging and Alzheimer’s Disease Center at OHSU, the study follows African American and Black participants in Oregon year after year. Research staff assess their cognitive and physical health and ask questions about their medical history during an annual clinic visit.
Most participants, 55 or older, have been involved for a decade or more. Data from the study furthers research about brain health, memory and aging.
A key component of the study has been the annual appreciation brunches, where Leona and her friends could celebrate each other, socialize and learn about the latest in brain health research.
“I liked learning about something that I was not aware of before. That’s a part I enjoy,” says Leona.
Debbra attended the brunches with her mother. “Every year we’d meet someone new at our table. Before she was diagnosed with dementia, she was very outgoing and would work the room, embracing friends she hadn’t seen in a long time.”
Before she retired, Leona was a special education instructor and community agent at Jefferson High School. Former students still approach her, thanking her for the impact she had on their lives. Members of her church congregation come up to hug her when she attends services on Sundays. Community activism is still important to her. Both Leona and her daughter plan on creating a new ministry at their church called “Seniors Matter Too” to counteract ageism, prepare older adults for the future, provide a space to share advice and motivate others to get involved with research.
“Commonality means being of help to somebody else, be it at a nursing home, your church community, or volunteering with a research study. People need to be involved,” says Debbra. “Volunteer what you can bring to the table.”
Debbra has been her mother’s caregiver for the past two decades and has supported her through the early stages of her diagnosis. Observing her mother’s activism 1and resilience over the years, as well as her participation in AADAPt, has inspired her to pursue her PhD in gerontology, start a clothing line for older women using her forty years of career expertise in the fashion industry, and motivate others like her to stay engaged in their parents’ lives. Watching her mother be part of AADAPt made her realize that volunteering for a study can inspire others to not only join a study, but to find other ways to benefit their communities.
“Being in a study is for yourself, yes, but it also impacts more people. It mushrooms to other communities,” says Debbra. “Researchers can gain a lot of information from our community. We haven’t had the research emphasis that other communities have had. Our community is a goldmine for research.”
Leona continues to participate in the annual assessments, keep in touch with fellow participants, and attend Maranatha Church, one of the largest congregations in the African American community in Portland. She hopes more Black Oregonians and others get involved in research and make differences in their communities.
“I know my information from the study is going to help others,” says Leona. “I want to help others who are in a situation similar to mine.”
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