Breaking the Silence on dementia in communities of color

The 7th annual Breaking The Silence event welcomed more than 200 attendees on April 15, meeting for the first time virtually. WAI Regional Milwaukee Office Director Gina Green-Harris, MBA, welcomed attendees and described how the office has continued to offer services during the COVID-19 pandemic. Their programs switched to virtual meetings, including Amazing Grace Chorus® and Coffee & a Chat programs, and outreach and engagement services continued.  “We’ve continued to make sure even now that our families continue to receive services,” she said. “Continuing to advocate for equity, healthy equity, continued as if the lives of our community depended on it, because they do.”

Watch a recording of the event here:

Breaking the Silence is an annual event held in recognition of Minority Health Month and aimed at highlighting health disparities that persist among racial and ethnic minority populations and the ways in which legislation, policies and programs can help advance health equity.

Scene from Breaking the Silence event
A screenshot of the program. Pictured (L-R): Dr. Jackson, Green-Harris, and event emcee Lou Holland, Jr.

Jonathan Jackson, PhD, gave a keynote address about research and health equity. Dr. Jackson is the founder and Executive Director of the Community Access, Recruitment, & Engagement (CARE) Research Center at Massachusetts General Hospital, a neurology instructor at Harvard Medical School, and serves on Mass General’s Alzheimer’s Disease Research Center (ADRC) and Mass General’s Cancer Center Equity Program, specializing in identifying and overcoming barriers to clinical research for people and communities of color.

At the event, Dr. Jackson described how clinical trials and research are not geared toward the very people who need representation and care. While Alzheimer’s disease research has made critical progress in identifying factors for prevention and better understanding cause of the disease, when it comes to equity in research there is little progress, he said. “The scientists will tell you they’re optimistic about the science, but when you talk about racial disparity, they are hopeless, they say there’s nothing to do,” Dr. Jackson said.

That’s why the work Green-Harris is doing is so important, he said, describing how watching her speech at an international conference in London several years ago became a formative part of his career, emphasizing to him the necessity to work in equity in research. Effective scientific progress has to center on social justice, he said.

“Increasing community participation in research is not only the best way to improve research, it’s the only way,” Jackson said.

Research innovation is contingent on community involvement, he said, and meaningful resource allocation needs to be built into research to meet barriers to increasing participation. This can include determining precisely why people aren’t able to participate and meeting that demand – things like providing mobile access, offering materials in multiple languages, and recognizing participants may not have extended time available to fill out a survey or attend study visits.

“This is how you break the silence, by giving people power, by listening to what they say and what they need,” he said.

Green-Harris said the WAI office has built relationships with donors and supporters hinging on this kind of community engagement, by moving away from outreach as simply reaching out to people, and instead working with and for people, she said.

“We build on the strengths of the community. Yes there are high volumes of disparity, but not everybody is in despair. We need to be tapping into people not for our science, but for their benefit and to help them with healthy living overall,” she said. “For many of our community members, research is not the priority. The real priority for the community is how do we live and thrive … we need to be engaging with them so that when we leave, whatever we built stays.”