According to the Alzheimer’s Association, Black Americans are twice as likely as non-Hispanic White Americans to suffer from dementia, the most common form of which is Alzheimer’s disease (AD). Yet Black Americans remain under-represented in clinical trials seeking to discover and understand the effectiveness of new anti-dementia medications. In fact, only about 2% of all participants in AD clinical trials over the past decade identified as Black/African American. This lack of representation threatens to
widen the health disparities gap by limiting our knowledge of how well (or poorly) new AD therapies will perform among members of the Black community.
Recently, a team of investigators, study coordinators, and community Ambassadors of the Mayo Clinic Alzheimer’s Disease Research Center (ADRC) met with over 80 community members in focus groups to explore barriers to participation in AD clinical trials. Several themes emerged from these conversations (See Figure 1 below),
which were later shared back with participants to ensure their voices were fully and accurately heard.
Fear was among the strongest barriers reflected in focus group discussions and was expressed across many dimensions. All focus groups voiced concerns about the history of racism, mistreatment, and exploitation in medical research. Although safeguards such as the informed consent process was acknowledged, many felt that this process could be overwhelming, too technical, and confusing.
Fall 2024
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Why are Black Americans missing
from Alzheimer's Clinical Trials?
News from AAIC 2024
Meet a Community Champion
Meet an ADRC Team Member
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Mayo Clinic Connect
Fig 1. Summary of Focus Group Findings
Other fears included worries of being diagnosed with AD, fear of undergoing procedures associated with research studies, concerns about potential side effects of new medications, and distrust in the study sponsors’ commitment to provide ongoing support in the event something unexpected happens.
Some felt that low clinical trial participation rates among Black Americans may reflect inadequate efforts by the research community to share culturally appropriate knowledge about AD and information about clinical trial opportunities in ways that make community members feel safe, valued, and invited to participate. Others noted that the time, effort, and logistical demands of clinical trial screening and participation could be significant barriers to individuals who have limited resources and/or many competing demands.
Despite the barriers cited, the majority of focus group members expressed a desire for Black Americans to be better represented in the search for new AD treatments. Some recalled events form 40 years ago, when a new class of blood pressure medication (ACE inhibitor) turned out to be less effective in Black patients. Focus group members expressed concern that something similar could happen, and that the Black community could be left behind, if more Black Americans do not participate in AD clinical trials. Many felt that a clearer understanding of how clinical trials work and how participation could potentially benefit the individual, their family members, future generations, and/or their community would be powerful motivators to participate.
To promote greater community participation in clinical trials, focus group members suggested expanding partnerships with churches and community organizations, increasing the frequency of messaging about AD in the community, sharing more information about how and why clinical trials are conducted, and being proactive in addressing commonly held beliefs and concerns about participating in medical research.
The Mayo Clinic ADRC is grateful to our focus group participants and working to incorporate what we have learned into our ongoing community outreach efforts. If you would like to know more about what we are doing to achieve these goals, we invite you to reach out to Mr. Victor Cora or Ms. Evanie Gulledge at any of our community events, or through the contact information provided on the back page of this issue of Let’s Talk Brain Health.
Above and right photos: Focus group members gather at The Ritz Theater to hear what the ADRC outreach team learned from their discussions on barriers to clinical trial participation among Black Americans.
The Alzheimer’s Association International Conference (AAIC) is the largest gathering in the world that is focused on Alzheimer’s disease (AD) and AD-related dementias. Each year, researchers, doctors, and healthcare professionals from around the globe convene to share their discoveries, learn from each other, and generate ideas for new treatments. This year’s conference was held in Philadelphia and yielded exciting new findings about dementia risk, protection, and diagnosis. Highlights from the meeting are summarized in the next few pages.
Blood Tests for AD Diagnosis
It has long been a goal to develop a simple and reliable blood test for the diagnosis of AD, as this could make accurate diagnosis more accessible and help people more quickly get the treatment they need. Research presented at AAIC 2024 reported that a specific form of tau protein called p-tau217 shows particular promise.
In fact, one study from Sweden that measured blood levels of p-tau217 together with another protein (amyloid) reported 90% accuracy in identifying people with AD, compared to 73% accuracy when diagnosis was made by memory disorder specialists and 63% accuracy when diagnosis was made by primary care doctors. At Mayo Clinic, Black Americans who participate in the ADRC and donate blood for research are helping ensure that blood tests for AD work equally for all people. Dr. Minerva Carrasquillo, Assistant Professor of Neuroscience, is leading studies to confirm the accuracy of p-tau217 and amyloid blood tests in Black Americans. Additionally, one of Dr. Carrasquillo’s students, Lindsey Kuchenbacher, recently participants. According to Dr. Carrasquillo, “combining findings from p-tau217, amyloid, and this new set of proteins may lead to even greater diagnostic accuracy in ways that are equitable for all patients”.
Do Diabetes/Weight Loss Drugs Protect the Brain?
Results of a new clinical trial presented for the first time at AAIC 2024 showed that a class of drugs known to help with diabetes and weight management also holds promise in protecting the brain from changes that cause it to shrink with age. The trial was led by researchers in England and included 204 patients living with Alzheimer’s disease. Half of the participants received the drug liraglutide, which is approved by the Food and Drug Administration (FDA) to lower blood sugar in people with Type II diabetes. The drug is also used for weight loss and is in a similar class of medications as Ozempic and Mounjaro.
The other participants received placebo (a safe but inactive substance). People taking the drug showed nearly 50% less shrinkage in the parts of the brain that control memory, learning, language and decision-making as compared to those who received placebo. They also showed slower decline on cognitive tests after one year. Treating diabetes and/or obesity has many health and brain benefits regardless of how they are managed, but this discovery may help identify new pathways in the treatment of Alzheimer’s disease as well.
What You Don’t Know CAN hurt you.
Many people know that chronic health issues like high blood pressure, high cholesterol, diabetes, and vitamin B12 deficiency can raise your risk of getting dementia. A team of Mayo Clinic investigators reported at AAIC 2024 that many of these risk factors were present in Black and Latino community members who volunteered to participate in the Mayo Clinic Study on Aging (MCSA).
Participants, who were age 45 and older, often did not know they had these health conditions or that they were not well managed. Nearly three-quarters of Black participants had high blood pressure or high cholesterol that was either undiagnosed or not fully treated. About half had undiagnosed or poorly treated diabetes, and nearly one quarter had undiagnosed or poorly treated vitamin B12 deficiency. As part of the MCSA project, participants were given a summary of their health findings so they would know if they had undiagnosed or under-treated conditions. The study’s lead investigator, Dr. Christian Lachner, hopes that providing this information to participants and raising their awareness about modifiable risk factors of dementia can help empower community members to take control over their brain health and partner with their primary care physicians to identify and treat medical issues that raise the risk of memory loss and dementia.
Processed Red Meat May Raise Risk of Dementia
Researchers from the Harvard School of Public Health reported that people who eat two servings a week of processed red meat have a higher risk of dementia than those who eat less than three servings a month. It also showed that replacing one serving of processed red meat with one serving of nuts and beans can lower risk of dementia. They examined data from a long-running study that tracked health habits of over 130,000 participants for up to 43 years. They reviewed food-frequency questionnaires to see how often participants reported eating processed red meat, such as bacon, hot dogs, sausage, and processed lunch meats like salami or bologna, as well as consumption of healthy foods like nuts, peanut butter, soy milk, tofu, beans, lentils, or peas. The findings showed that people who ate more processed red meat had a 14% higher risk of dementia than those who ate less. They also found that replacing one serving of processed red meat with one serving of the healthy foods lowered risk of dementia by 20%. According to the lead investigator, “Processed red meat has also been shown to raise the risk of cancer, heart disease and diabetes.
It may affect the brain because it has high levels of harmful substances such as nitrites (preservatives) and sodium.” Protecting your brain by making healthier food choices can pay off in terms of lowering your risk of memory loss.
Donated Brain Tissue Reveals Genes that Influence Alzheimer’s in African Americans
Investigators from the Mayo Clinic ADRC joined forces with 11 other research centers around the country to study the influence of genes on Alzheimer’s disease in African Americans. The investigators studied brain tissue donated by 207 African Americans who had passed away across all 12 centers: 125 donors had Alzheimer’s disease, and 82 donors were cognitively normal at the time of their passing. The investigators found many genes associated with Alzheimer’s and reported at AAIC 2024 that, out of the 20 genes found to be most strongly associated with Alzheimer’s disease, only 4 had been previously identified as important in a much larger study of brain tissue donated primarily by non-Hispanic Whites. Put another way, when given an opportunity to study brain tissue from African American donors, 16 different genes were found to have a potentially important role in Alzheimer’s disease. These findings are important to finding effective treatments for Alzheimer’s in African Americans and highlight the importance of African American participation in brain donation samples. This discovery was made possible by research volunteers - many from the Jacksonville community - whose gift of brain donation
after death will contribute meaningfully to improved dementia care for future generations of their families and other community members.
Mrs. Pamela Quarles is the founding member of the community Ambassador group of the Mayo Clinic Alzheimer’s Disease Research Center (ADRC). She has both a personal relationship with Alzheimer’s disease and a longstanding partnership with Mayo Clinic. She is a former caregiver, a community advocate, and a key supporter of ADRC outreach and community engagement efforts. With a 30+ year foundation of Human Resources experience with corporations such as Johnson & Johnson and Citibank, over the years, Pam has been called upon to share her skills and experience to serve on community boards and as an advisor to the State of Florida Alzheimer’s Disease Initiative. Her work with the Mayo Clinic ADRC Ambassadors has helped guide, evaluate, and sustain many of the healthy brain aging and dementia awareness programs that the ADRC offers to community members. We recently sat down with Pam to speak with her about her journey.
Hi Pam, what made you want to partner with the ADRC?
The Mayo ADRC helped me through my mother’s Alzheimer’s journey. With their assistance, we were blessed to ensure that my mother had the best quality of care throughout her struggle with the disease. During this time, I realized many others were also dealing with Alzheimer’s but lacked access to the invaluable resources provided by the ADRC. This raised a critical question for me: “Shouldn't best-in-class quality of care for patients and caregivers be available to everyone?”
What were your thoughts on how you could help?
As our family navigated this journey, I recognized that there were specific cultural aspects within the African American community that the ADRC could address in its services. Tailoring their deliverables to better meet the
needs of communities of color would make their services more appealing and effective. My parents instilled in me the belief that one’s purpose is to help others. Therefore, it was clear to me that I needed to work towards ensuring that the opportunities and services we received by participating in the ADRC were made known and accessible to our wider community.
Can you tell us about the community Ambassador group you helped gather?
Alzheimer’s is a community problem, and problems impacting the community, in my belief, need to be solved by community stakeholders. I was fortunate that many talented and committed community members responded favorably when asked if they would willingly work to help improve the lives of those touched by Alzheimer’s Disease.
How can the ADRC & community solve the Alzheimer’s problem?
Effective communication and outreach are essential to ensure that valuable information reaches the people who need it. You may have a terrific, life-changing idea, or even a cure for a disease, but if no one knows of it, what good does it do? In a large and diverse community like Jacksonville, using a multi-faceted approach can be particularly effective.
Thank you so much for your efforts toward improving communication and outreach! Those who know you are keenly aware of your love of travel. Can you share with our readers what has been one of your favorite places to visit?
Yes, my husband and I have been blessed to travel quite a bit. And of all the places we have visited, the eastern coast of South Africa stole our hearts. When we left, we felt as if we were leaving the home we never knew we had.
Meet an ADRC Team Member, Francine C. Parfitt, MS, CDP
If the name or picture seem familiar to you, it’s probably because Ms. Francine Parfitt has been a constant force in the Mayo Clinic Alzheimer’s Disease Research Center (ADRC) for over 3 decades. Upon joining Mayo Clinic in 1992, Francine partnered with Dr. Neill Graff-Radford and helped establish both the fledgling research center and the state-funded Memory Disorder Clinic, both operating out of the Mayo Clinic Department of Neurology.
Francine has always had a keen interest in learning from generations, coming from a family where all generations were involved in daily life, holidays, and other family celebrations. She notes that “several times each year there would be opportunities for my cousins and me to learn family cooking and baking secrets from our grandmothers and great aunts. To this day I still prepare some of the same foods, such as home-made cinnamon yeast rolls and traditional holiday breads. Now I share those same traditions with my grandchildren.”
Receiving degrees in education, communication, health care education, and administration, it was only natural that Francine would find herself working in the medical field. Her training focused on aging and adult studies and early in her career she established the first dementia-focused adult day care programs in Northeast Florida.
True to her upbringing, Francine would always stress to staff members the importance of learning from others, being engaged listeners, and asking questions. Her goal was to ensure that all staff appreciated and were enthusiastic about the stories and other things clients would tell them. As Francine likes to say, “People with memory loss have wonderful stories to tell if we just take the time to listen.”
Today Francine’s interest in advocacy continues. Although she is officially retired, she continues to support the Mayo Clinic ADRC. You will see her at ADRC information tables at community events, serving as a helpful resource of caregiver tips and information on expert panel discussions, and helping to lead focus groups on community dementia needs. She is also responsible for pulling together content for this newsletter!
When she is not helping out at the ADRC, she stays actively involved serving her community through positions on boards and support of cultural programs. She also spends considerable time traveling, spending time with family, pursuing lifelong interests and - most important to someone who appreciates generations - spending time with her family and 4 grandchildren.
Most people could use more fruit in their daily diet. Apples are a handy and reliable way to check that box every day. Different apple varieties can satisfy tastebuds that lean toward tart or sweet. And apples are a good source of fiber, helping food move through the digestive system. Good digestive health has been associated with better brain health and lower risk of diseases, including some forms of cancer. Apples also have a healthy dose of vitamins and minerals that protect the body's cells against damage from day-to-day living. So, there is some wisdom in the old saying that “an apple a day keeps the doctor away!”
Autumn is apple season, and this delicious recipe is perfect for breakfast or a healthy snack any time of day. Besides apples, the other ingredients in this recipe also benefit your health. Oatmeal is a nutritionally balanced food which, when combined with a healthy protein like Greek yogurt, will create a filling and satisfying breakfast (or snack) for your day!
Ingredients
1 cup rolled old fashioned oats
1 cup 1% milk
1 cup nonfat plain Greek yogurt
4 small apples, grated or diced
1 tsp cinnamon
16 walnuts, chopped
Directions
Add the oats, milk, 1 cup of yogurt, apple and cinnamon into a bowl.
Stir until well until combined.
Divide the oats mixture equally among 4 containers with lids.
Refrigerate overnight.
When ready to enjoy, top the mixture with ½ cup yogurt and some chopped walnuts.
*Serves 4, Serving Size: 1/4th oat mixture, ½ cup yogurt, and 4 chopped walnuts
ADRC investigator, Dr. Maisha Robinson, appointed Chair of Mayo Clinic Florida Community Relations Committee
We are pleased to congratulate Dr. Maisha Robinson, who was recently appointed Chair of the Community Relations Committee at Mayo Clinic in Florida. This committee carries out the mission of Mayo Clinic Florida to support community health by investing in programs and initiatives designed to improve the health and well-being of Jacksonville and NE Florida residents by addressing lifestyle, education, socioeconomic, and environmental factors. Despite her new role, Dr. Robinson will continue to serve as an investigator in the Mayo Clinic ADRC, where she has led projects to improve community awareness of AD through clergy support, as well as efforts to develop innovative and effective strategies to reduce caregiver burden in those who provide care to loved ones with memory loss. As a vital member of the ADRC outreach team, we are happy that she will continue engaging the community and supporting caregivers and look forward to seeing all the good work she will accomplish in her new role.
Neuroscience at Mayo Clinic celebrates 30 years of discovery
August marked the 30-year anniversary of the first neuroscience laboratory at Mayo Clinic Florida. Since then, Mayo neuroscientists have partnered with ADRC investigators to improve our understanding of normal aging and the causes, treatments, and diagnosis of Alzheimer’s disease and other neurodegenerative conditions such as Parkinson's disease, frontotemporal dementia, and Lewy body disease. These advances would not have been possible without the support of patients and community members who volunteered their time to participate in ADRC studies of aging and memory loss. Their willingness to provide blood samples, receive brain scans, take memory tests and, in some cases,
give the gift of brain donation after they had passed away, has contributed greatly to improvements in dementia care that could not have been imagined 30 years ago.
Community Pages
The Mayo Clinic ADRC outreach team has been out in the community sharing information about healthy brain aging, memory loss, Alzheimer’s disease, and dementia. In June, we were on hand to answer questions about brain health at the Natural Beauty Fest at Deerwood Castle, and in July, we helped answer questions and provided resources about Alzheimer’s disease following a screening of the video, Forget Me Not., at the Mary Singleton Center. Forget Me Not is a stage play sponsored by African Americans Against Alzheimer’s Disease that touches on how a family copes with the revelation that the patriarch is developing memory problems due to Alzheimer’s. The play was videotaped so it could be seen by a wider audience. Visit https://www. usagainstalzheimers.org/forget-me-not to learn more.
Marcis Pointe In August, members of the ADRC outreach team visited with residents of Marcis Pointe Senior Apartment Community (photo right) on the westside of Jacksonville, to share information about healthy brain aging.
Brentwood Neighbors Dr. John Lucas, Mr. Victor Cora, and Ms. Evanie Gulledge met with Brentwood community leaders in August (photo left) to share information about Alzheimer’s disease and explore ways to promote healthy brain aging in the neighborhood, assist residents who have memory loss, and support family members who provide care for loved ones with Alzheimer’s disease and other dementias.
Twin Towers Residents of Jacksonville’s Twin Towers Senior & Disabled Adult apartment complex came out on Tuesday, September 25, to hear about the role of diet and nutrition on brain health. Following the discussion, residents were treated to a cooking demonstration of the Mediterranean diet, a brain and heart healthy set of food choices associated with lower rates of Alzheimer’s disease. Afterwards, residents enjoyed a brain healthy lunch of Mediterranean Baked Cod, green beans, hummus, and homemade pita chips.
We’re closer than ever to stopping Alzheimer’s. But to get there, we need you. Join us for the world’s largest fundraiser to fight Alzheimer’s disease.
Be sure to visit the Mayo Clinic ADRC tent at the UNF amphitheater to receive fun giveaways and helpful information about brain health, memory loss, and caregiving.
What: Artful Moments Dementia-Friendly Experience When: November 8, 2024, | 1:00pm - 3:00pm Where: Cummer Museum of Art & Gardens, 829 Riverside Ave, Jacksonville, FL 32204
Maintaining social connections and staying mentally active are important goals for people with memory loss, as both activities have been shown to be associated with brain health. Unfortunately, it’s easy to become withdrawn and socially isolated when we begin to notice memory loss, or when we are caring for a loved one with dementia. Some may feel embarrassed by their symptoms while others may have concerns that their loved ones may become easily overwhelmed.
The Mayo Memory Disorders Clinic, in partnership with Jacksonville’s Dementia Caring Community initiative, offers a new opportunity for people with dementia and their care partners to socialize and enjoy the art and gardens of the Cummer Museum in a calm and comfortable way.
The Artful Moments program is a quarterly event where guests can experience the Cummer Museum on a guided experience led by staff who are trained specifically to offer a dementia-friendly experience. Guides are knowledgeable about Alzheimer’s disease and dementia and have learned skills to make the experience an enjoyable opportunity to view exhibits and connect with others who understand the challenges of memory loss.
Artful moments takes place on Friday, November 8 from 1:00pm-3:00pm. If you would like to learn more, or are interested in joining an Artful Moments event, please call 904-953-6523 or email us at MCJMemoryDC@mayo.edu.
Reservations are Required
Mayo Clinic Connect
Ask Questions. Get Answers. Connect.
Mayo Clinic Connect is an online community, connecting patients and family caregivers with each other. You do not have to be a Mayo Clinic patient or caregiver to join the conversations. You also do not have to have Alzheimer's disease or related dementia, because Mayo Clinic Connect is a forum for people seeking answers or support for a wide variety of health-related issues.
Community members share experiences, ask questions, find answers, give and get support and exchange vital information. You can join support groups, participate in online discussions, read newsfeed posts, and learn about Mayo Clinic programs addressing health issues.
Mayo Clinic Connect is supported solely by Mayo Clinic. Any information you share on Connect forums is not shared or sold to third parties or used to generate funding.
If you or someone you know would like to receive this newsletter, contact us through any of the methods described below to be added to our distribution list. If you have received this newsletter in error, or otherwise do not wish to receive future issues, please let us know. You can also reach out to us if you would like to:
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