National Alzheimer’s Buddies hosted its first Virtual Symposium in November. As the global pandemic has brought additional challenges to our Buddies living with Alzheimer’s, their families, the nursing home staff, and our volunteers, we asked everyone to join us for a discussion on the most pressing issues in dementia care today—COVID 19 and racial and social disparities.
“Only research will lead to the first survivor, and discovery and research can only happen through awareness, advocacy, and action.”
Of the diverse speakers, we had the opportunity to hear from Dr. Ricci and Andy Sanchez, a couple who shared their story with the diagnosis of early-onset Alzheimer’s Disease. Dr. Ricci Sanchez, a former chief operating officer at a hospital, spoke about the impact of her diagnosis on her career, lifestyle, and health. While they both agree that the diagnosis initially “knocked them down,” they share their journey to how they adjusted to the changes, found a support system, and managed their finances. They both also describe the importance of the work that is done by National Alzheimer’s Buddies and other organizations, who have dedicated their mission to Alzheimer’s Disease and provide patient-centered resources. Andy Sanchez closes off their story by stating that “only research will lead to the first survivor, and discovery and research can only happen through awareness, advocacy, and action.”
The last portion of the event surrounded a discussion on the racial and socioeconomic disparities in dementia care. The panel consisted of three speakers who all contributed to a highly productive conversation surrounding these issues. Our first panelist was Dr. Oanh Meyer, an assistant professor at the Department of Neurology at the UC Davis School of Medicine. Dr. Meyer specializes in how racial disparities affect Alzheimer’s patients, specifically in the Asian American community. Of particular interest to Dr. Meyer is the affect that AD has on caregivers, including factors such as cultural and economic stress. Jason Resendez, our second panelist for this discussion, is the executive director of UsAgainstAlzheimer’s Center for Brain Health Equity and the head of the LatinosAgainstAlzheimer’s Coalition. Mr. Resendez had specific interest in the impact of Alzheimer’s on the Latino community, where the population is on average affected by AD earlier in life with a higher chance of being undetected. HIs work is focused on policy and research that will address social determinants of health for populations of color. Our last panelist was John Saunders, Jr. who is the executive director of the Wesley House Association, an establishment located in St. Louis serving a predominantly black population. As someone who has been at Wesley House since he was a Child, Mr. Saunders has become personally familiar with the needs of the aging community in this town.
The first part of the discussion centered around the question of inequalities in dementia care. The panelists agreed that disparities in dementia care are rooted in disparities that are present throughout life. During the panel Mr. Resendez stated, “The cumulative impact of life course events contribute to dementia and create a higher risk of dementia in later life. We must recognize that we are not all born with the same opportunities for cognitive brain health because cognitive brain health is shaped by our opportunities for a quality education, for building wealth, for accessing quality health care, etc. “ It was also emphasized that multiple social factors, including life stress and adversity, affect the ability to diagnose and treat AD in a timely manner. Dr. Meyer mentioned that a key component to combating these issues is allowing younger individuals to become educated on AD so that they can become engaged and help their community as they grow older. Our mission at Alzheimer’s Buddies is to hopefully accomplish such a task by allowing college students to be immersed in this issue.
“The cumulative impact of life course events contribute to dementia and create a higher risk of dementia in later life. We must recognize that we are not all born with the same opportunities for cognitive brain health because cognitive brain health is shaped by our opportunities for a quality education, for building wealth, for accessing quality health care, etc”
The panel also discussed the concerns colored AD patients may have when in a nursing home that is predominantly white, an issue that is more common than expected. Dr. Meyer shared a personal experience of sending her mother to a daycare where no one looked like her. She explained that she took the initiative to talk to the daycare workers about this issue and was met with the aid she desired. Her story was meant to give hope to those struggling with this issue, explaining that even though they may be the minority they still can be given the comforted care they deserve. Mr. Saunders introduced community centered organizations as another option he thinks POC Alzheimer’s patients should explore as an alternative to nursing facilities. Community centered organizations, such as Saunder’s Wesley House, may be a great place for minority populations to be cared for in a comfortable and familiar environment.
One of the problems panelists emphasized was the lack of knowledge about Alzheimer’s disease in minority communities, which makes it harder for many to distinguish between the normal aging process and Alzheimer's Disease. Dr. Meyer discussed the role of faith based organizations in solving this issue.
“A lot of Asian American communities find a lot of credibility in their faith organizations. These are people who have a lot of credibility and can make a huge difference in promoting knowledge about Alzheimer’s disease and connecting people with resources,” Dr. Meyer said.
To end, Mr. Saunders shared his thoughts on the discussion, “The beauty of this is that you guys have brought many different peoples of color to the table to begin to understand and discuss disparities, similarities, and issues that affect us all. We are all the same people, and this is the type of thing that needs to take place--and ultimately will make our country a better place to be.”