Winter 2024
Addressing Disparities in Dementia Research
Dr. Gregg Day, a Mayo Clinic neurologist and investigator in the Alzheimer’s Disease Research Center (ADRC), is working to find ways to better support African American representation in Alzheimer’s research. As principal investigator of the Longitudinal Early-Onset Alzheimer’s Disease Study (LEADS) at
Winter 2024
In this issue:
- Addressing Disparities in Dementia Research
- FDA Approves a New AD Drug: Lecanemab
- From Awareness to Action
- Meet a Community Champion
- Updates on Alzheimer's
- Meet an ADRC Team Member
- Foods to Maximize Your Memory
- What's Cooking?
- Community Pages
- Upcoming events
Mayo Clinic Florida, Dr. Day was awarded supplemental funding to learn more about barriers and facilitators to African American participation in the study. LEADS is a nationwide study of Early-Onset Alzheimer’s Disease (EOAD), also called “younger-onset” AD. EOAD shows up before age 65 and differs from the usual presentation of Alzheimer’s disease (known as “late-onset” AD or “LOAD”).
Memory loss may not be the first change that people with EOAD experience. The course of decline is typically faster than LOAD, and the needs of people with EOAD tend to differ from those of people with LOAD because they are often still working and raising families when symptoms of disease first appear. The ultimate goal of LEADS to understand the genetic, biological, and clinical processes involved in early-onset disease, so effective treatments can be developed.
Nationwide, African American enrollment in LEADS has been much lower than needed to ensure sufficient representation. Dr. Day and his team surveyed 240 members of the Jacksonville African American community and conducted focus groups with 26 community members to learn what makes it easier or more difficult for African Americans of different ages living in Jacksonville to join a research study like LEADS.
More than half (51%) of survey respondents identified 3 or more meaningful barriers to participation, while a similar number of people (57%) identified 3 or more meaningful ways to improve community participation.
The ultimate
goal of LEADS is to understand the genetic, biological, and clinical processes involved in early-onset disease, so effective treatments can be developed.
Some interesting differences between older and younger respondents were also noted:
Top Rated Barriers By Age
Top Rated Facilitators by Age
Most people, regardless of age, expressed hesitation about participating in studies that include lumbar puncture (“spinal tap”), a procedure that removes a small amount of fluid from the spine to confirm presence of disease markers. Weekday visits, longer (4-hour) study visits, and more frequent visits (up to 4 visits in 2 months) were also seen as significant barriers by both age groups. Younger people saw childcare needs as a significantly challenging barrier, while older people expressed hesitation about participating in memory evaluations.
Both older and younger people felt that top motivators for community members to participate would include reimbursing expenses for meals and transportation, being able to complete study measures at home or somewhere in the local community and having access to their study results. Older people suggested that providing transportation to Mayo Clinic would improve participation, whereas younger respondents felt it would be easier to participate if they could come into complete study visits on the weekend.
Focus groups largely confirmed the survey findings, while also shedding light on the long-lasting impact of systemic racism on research participation. The stories and lived experiences of focus group participants provided clear context and living reminders that we need to work diligently to earn trust, work harder to keep it, and work together to cultivate relationships with community partners and future research participants.
To those who participated in this study we thank you for sharing your thoughts and feedback! We are listening and committed exploring ways use what we have learned to make research opportunities more accessible.
We thank Dr. Nicole Nissim, Senior Research Fellow in the Mayo Clinic Department of Neurology, for contributing to this article.
FDA Approves New Alzheimer’s Drug: Lecanemab
Adapted from Dee Stiepen, Mayo Clinic News Network
The Food and Drug Administration (FDA) recently granted approval of a treatment that could give some patients with Alzheimer’s Disease something they haven’t had before: a medication that may slow the decline of memory and thinking abilities.Lecanemab (Leqembi) shows promise in removing amyloid plaques from the brain, according to Dr. Ronald Petersen a neurologist and director of the Mayo Clinic Alzheimer’s Disease Research Center. Below, Dr. Petersen answers some common questions about this new drug.
How does lecanemab work?
Dr. Petersen: Amyloid is one of the key proteins involved in Alzheimer’s disease. It’s thought that by removing amyloid from the brain, you will slow down the rate of progression of the disease. Lecanemab helps remove the amyloid. Now, importantly, it doesn’t stop the disease. It doesn’t make people better, but it will slow down the rate at which the disease progresses, so people remain functional for a longer period of time.
What are the potential side effects?
Dr. Petersen: Lecanemab does, in fact, remove amyloid from the brain, but it may also remove amyloid from the blood vessels in the brain. This may render the blood vessels leaky, such that people on this drug may develop some swelling in the brain and may develop some bleeding in the brain. This can be monitored by MRI, and usually the side effects have been mild or moderate.
Why would someone consider using lecanemab?
Dr. Petersen: We now may have the ability to actually modify the underlying disease process of Alzheimer’s disease. Before now, we’ve had drugs to help treat symptoms, but they do not actually get at the underlying disease process. Drugs like lecanemab now actually alter the disease process itself and will slow down the rate of progression. That’s a major step forward.
Who would be a good candidate for this treatment?
Dr. Petersen: It’s likely that lecanemab will be used for people who have mildly symptomatic Alzheimer’s disease. So clinically, we call that mild cognitive impairment or mild dementia due to Alzheimer’s disease. These were the people in the clinical trial who demonstrated the effectiveness of the drug.
A New Hope.
The ability to slow down memory loss in Alzheimer’s disease has led investigators to ask, “Can we delay or prevent the onset of memory loss by removing amyloid before symptoms begin?”.
This question is being addressed in The AHEAD Study, which explores the impact of lecanemab in cognitively normal people who are at risk for Alzheimer’s disease due to elevated levels of amyloid in the brain.
If you would like more information about The AHEAD Study, call the Mayo Clinic Florida Alzheimer’s Disease Research Center at 904-953-6523 or refer to the back page of this newsletter for other ways to contact us.
From Awareness to Action: START to Shape the Future of Alzheimer’s Treatment for Your Loved Ones and Community
The quest for new treatments for Alzheimer’s disease continues with new clinical trial opportunities. Recently approved therapies enlist the body’s natural defenses to attack and clear a protein called beta amyloid (Aβ) from the brain, which can build up for many years before causing the memory loss symptoms of Alzheimer’s disease.
An upcoming clinical trial will explore a promising new way to combat Aβ and Alzheimer’s.
The Synaptic Therapy Alzheimer’s Research Trial (START) will investigate if a new drug, called CT1812, can halt or slow the process of Alzheimer’s disease by binding to the parts of brain cells that are often damaged by Aβ.
Early indications suggest that once CT1812 binds to cells, the toxic parts of Aβ are blocked from damaging them. This unique way of protecting brain cells does not rely on the body’s immune system.
Mayo Clinic will be participating in this nationwide clinical trial beginning in early 2024. The goal of the trial will be to evaluate the effectiveness of the medication in slowing or halting Alzheimer’s disease and monitoring any side effects that may occur. Participants who enroll in the trial will receive either medication or a placebo (inactive treatment) for 18 months, in the form of 2 capsules taken once a day. Neither the participant nor the investigator will know if they are receiving active or inactive medication.
Joining a treatment trial like START is an important step on the journey to a future of equitable therapies that benefit loved ones, the community, and future generations. We invite the community to take this step with us. We are committed to sharing information transparently, answering questions, and overcoming barriers so that everyone has an equal opportunity to benefit from research.
We will continue to share information about START and other studies in future newsletters and at our community events.
If you would like to learn more, please contact the Mayo ADRC at (904)953-6523.
Meet a Community Champion
Ms. Marcia Ellison
EllisonMs. Marcia Ellison is a longtime advocate for Jacksonville’s New Town community. She is also a valued leader in the New Town Success Zone/Mayo Clinic ADRC Dementia Friendly Community partnership, where she has been instrumental in bringing dementia education, caregiver support, and dementia resources to the people. As a longtime Jacksonville resident, a visit with Ms. Ellison is an opportunity to learn about our history and the power of advocacy. Ms. Ellison was born and raised in Jacksonville. She moved to the New Town community in 2002, where she has witnessed many changes. She recalls when the Post Office on Kings Road was a community of homes and when the neighborhood once had a thriving grocery store. As a graduate of Stanton, Ms. Ellison is well aware of the special place the school has held in the hearts and lives of so many Jacksonville residents over the years.
On a personal note, Ms. Ellison has two children, 14 grandchildren, and 10 great grandchildren! She has always felt the need to make the world a better place for the next generation and to
make community life better for all. She is an avid volunteer and has supported many organizations, including the Boys and Girls Clubs, PTA, School Advisory Councils, and New Town Vision Keepers. She was involved in President Johnson’s War on Poverty, Master Gardening for the New Town Community Garden and, most recently, partnering with community leaders to address the food desert problem in New Town.
Ms. Ellison has a keen interest in Alzheimer’s disease. When her mother began having memory problems in 1987, Ms. Ellison took a leave of absence from her job to provide care. She recalls the day she was given a copy of the book, “36-Hour Day,” and how it eased her journey. She fondly recalls wonderful and supportive neighbors, and her ability to obtain respite from adult day care. Caring for her mother made Ms. Ellison aware of changes in other people, and she has always been ready to help and share her experience with others.
We are grateful for all of Ms. Ellison’s efforts, especially her role leading the New Town Memory Café and Caregiver Support program. This program, sponsored by the New Town Success Zone, brings together those with memory loss and their care partners each month for informative and uplifting experiences.
If you or a loved one have memory loss and you would like to find a friendly, safe, and respectful environment for fellowship and support, check our calendar of events (page 15) and make a visit to an upcoming Memory Café/Support event. We’re sure Ms. Ellison would be happy to see you!
News from the Alzheimer’s Association International Conference
The Alzheimer’s Association International Conference (AAIC) is the world’s largest meeting dedicated to advancing dementia science. Each year, AAIC convenes researchers, clinicians, and dementia professionals from all career stages to share discoveries that will lead to better treatment and prevention of Alzheimer’s disease and related dementias.
This year’s conference, which was held in Amsterdam, addressed several questions on the impact of lifestyle factors on brain health, some of which are summarized below.
Does where you live play a role in Alzheimer’s disease?
Researchers found that people living in the eastern and southeastern regions of the U.S. were more likely to get AD than people living in the Midwest, Southwest, or West. In fact, 8 of the 10 counties with the highest rates of AD are in eastern and southeastern states, including Florida, Maryland, New York, Mississippi, Louisiana, Georgia, and South Carolina.
The specific counties with the highest rates of AD in the U.S. are:
- Miami-Dade County, FL
- Baltimore County, MD
- Bronx County, NY
- Prince George's County, MD
- Hinds County, MS
- Orleans Parish, LA
- Dougherty County, GA
- Orangeburg County, SC
- Imperial County, CA
- El Paso County, TX
The investigators, led by Dr. Kumar Rajan of Rush Medical College in Chicago, suggest that a combination of demographic characteristics may explain the higher prevalence in these counties, including older age and higher percentages of Black and Hispanic residents, who are known to be at higher risk for AD compared to white Americans.
Can your digestive system contribute to risk of Alzheimer’s disease?
Several discoveries on the interconnection between digestive (gut) health and brain health were reported. It is already known that the bacteria and micro-organisms that live in our digestive tracts can influence a number of vital body functions. At this year’s AAIC meeting, researchers from The University of Texas at San Antonio announced that they found specific gut bacteria associated with risk and protective factors for AD. Additionally, researchers from Harvard Medical School reported that people who experience constipation (less than one bowel
movement every two days demonstrated poorer cognitive function than people with daily bowel movements. It is known that exercise and a diet filled with fruits, vegetables, healthy grains, and large amounts of daily water consumption benefit brain health. These lifestyle habits also help ward off constipation, which may at least partly explain the observed relationship between cognition and gut health.
Does opioid use impact Alzheimer’s disease?
Researchers in Denmark studied the impact of opioid pain medications on older adults. Opioids are a class of powerful, pain-reducing drugs that are available by prescription but often obtained illegally (e.g., oxycodone, morphine, fentanyl, heroin). Although opioids have legitimate pain-relief benefits, they are addictive, easily abused, and carry serious risks.
Researchers found that people with dementia who were given opioid pain medication faced heightened risk of death, especially in the first two weeks of opioid use. One-third of people with AD who were given prescription
opioid pain medications died within 180 days after their first opioid dose – a rate of death that was five times higher than people with AD who did not take opioids.
Opioid medications can cause sedation, confusion, breathing difficulty, and falls. Older adults with dementia already have a significant brain disorder that can make them frail and even more susceptible to the negative consequences of opioids. Decisions on pain management therapies should therefore be carefully considered for loved ones with dementia.
Does hearing loss cause dementia?
Researchers from Johns Hopkins Medical Center presented findings from a study of over 1000 cognitively normal people with mild to moderate hearing loss typical of older adults. One group engaged in a 3-year intervention that included the use of hearing aids, a hearing “toolkit”, and ongoing counseling with a hearing specialist. Another group received no hearing intervention but met regularly with a health educator to discuss general disease prevention.
The hearing intervention did not have an impact on cognitive outcomes for overall group, but a subset of participants who were at high risk of stroke or heart attack showed significant slowing of cognitive decline over the three years of the study.
These findings are encouraging for African Americans, who are at higher risk for stroke due to higher rates of diabetes and high blood pressure. If you or a loved one are an older adult with hearing loss, you may be able to improve your cognitive abilities and delay cognitive decline by something as simple as getting your hearing checked and corrected.
Meet an ADRC Team Member
Ms. Evanie Gulledge
Ms. Evanie Gulledge is an outreach coordinator of the Mayo Clinic Alzheimer’s Disease Research Center. We caught up with her to find out a little about what she does and why she does it.
Hi Evanie! What interested you in working on ADRC outreach projects?
I was interested in this work because I grew up in a Black community where a lot of people lacked knowledge about healthcare. I have family members that have passed of Alzheimer’s disease, and I know a lot of people in the community who don’t have access to good healthcare or information about it. I wanted to learn as much as possible so that I could share my information.
What do you enjoy the most about your work?
I love that I can shed light on a subject that is not often talked about. I love providing resources for not just the people who may suffer from memory disorders, but the caregivers as well. What I love most is going out to the events and personally speaking to people. I have some great conversations with the people I meet, and it makes me feel like I have served my purpose when community members leave an event with more knowledge on memory disorders and available resources. I also love sharing information with the community about the free services that are available when people join research studies.
Can you tell us more about your background?
I am originally from Buffalo, NY. I have been in Jacksonville, FL for eight years now. I have done community outreach for years and previously worked with youth organizations to put an end to poverty and gang violence in Black communities. I obtained my Florida real estate licence in 2016, and I am still a licensed realtor. I’ve been with Mayo Clinic for almost 6 years, and with the ADRC for almost 2 years. I have an associate degree in business management and will graduate with my bachelor’s degree in business in January of 2024.
What are some of your favorite things to do when not at work?
Sleeping, taking my dog to the dog park, and watching funny and scary movies!
Foods to Maximize Your Memory
Adapted from Lizzie Bertrand, Mayo Health System, St. James, MN
As noted earlier (pages 6-7), research suggests that thinking abilities can be influenced by what you eat.
Studies show that what is good for your heart also may be good for your brain. So, the best bet for rich
memories may be to trade in unhealthy fats and foods in your diet for healthier choices.
In general, diets rich in fruits, vegetables, whole grains, legumes, fish, healthier fats, and herbs or seeds can boost the brain’s memory functioning. These foods convey brain health for different reasons, so including a variety of them in your meals can be beneficial. Some key nutrients that help support brain health include B Vitamins, which support brain development, and Omega 3 fatty acids, which combat inflammation and improve communication between brain cells.
A large number of food-based nutrients fall under the category of “antioxidants,” which are especially important for brain health. Brain cells require large amounts of oxygen. When oxygen is processed in the brain, the byproducts are unstable and can damage brain cells. Antioxidants neutralize these byproducts, so getting an abundant supply of them from foods is a great way to help your brain stay healthy. Unfortunately, not all communities have equal or easy access to healthy food choices. If fresh options are not available, frozen foods can be a good choice, as studies show that frozen produce has the same nutritional quality as fresh produce. Other options could be to look for local Farmer’s Markets and/or Community Gardens. The benefit to your brain health is well worth the effort.
BRAIN HEALTHY FOODS
Fruits
• Blackberries, Blueberries, Raspberries, Strawberries
• Cranberries, Goji Berries, Grapes
• Apples, Apricots, Mangoes, Watermelon, Citrus
Vegetables
• Tomatoes, Red Peppers, Carrots, Beets
• Eggplant, Pumpkin, Sweet Potatoes
• Broccoli, Cabbage, Cauliflower, Artichokes
Proteins
• Oily Fish (Tuna, Salmon, Trout, Mackerel, Herring, Sardines)
• Shellfish (Oysters, Mussels, Clams, Crayfish, Shrimp)
• Lean Meats (Chicken, Turkey, Lamb, Sirloin Steak)
• Meat Substitutes: Tofu, Eggs
Healthy Fats
• Avocado
• Olive Oil
• Canola Oil
Herbs & Spices
Cilantro, Oregano, Parsley, Rosemary, Mint, Garlic, Ginger, Cinnamon, Turmeric, Saffron
Nuts, Beans, Seeds Peanuts, Almonds, Pecans, Walnuts, Lentils, Kidney Beans, Sesame Seeds, Bran, Whole Grains
Treats
• Red Wine
• Dark Chocolate
• Tea (esp. Green Tea)
• Coffee
What’s Cooking?
Hearty Turkey Chili
Adapted from the Mayo Clinic Cookbook
Ingredients
- 2 cups chopped zucchini
- 1 teaspoons olive oil
- 1 cup chopped onion
- 2 cups chopped celery
- 1 cup chopped bell peppers
- 2 teaspoons chopped fresh garlic
- 1 pound chopped cooked turkey
- 1 1/2 tablespoons chili powder
- 1 teaspoon cumin seed
- 2 cups diced canned tomatoes
- 4 cups canned kidney beans, rinsed & drained
- 2 cups low-sodium vegetable broth
- 1 teaspoon brown sugar
Directions
- Heat the oven to 475 F. Prepare vegetables while oven is heating.
- Spray a glass baking dish with cooking spray. Arrange the zucchini in a single layer in the baking dish. Roast for 8 to 10 minutes until slightly tender and lightly browned.
- While the zucchini is roasting, add the oil and chopped onions to a Dutch oven or soup pot. Saute in olive oil over low heat until the onions are browned. Add the celery and peppers and saute until softened. Add garlic, turkey, chili powder and cumin seed. Stir, cover and lower heat to simmer for about 5 minutes. (Note: If you like, you can set aside some raw vegetables to sprinkle on top when serving, to add texture).
- Stir in the tomatoes, kidney beans, vegetable broth, brown sugar and roasted zucchini. Cover and simmer at least 15 minutes (longer is better, if you have time). Ladle into individual bowls.
- As a final touch, sprinkle with low-calorie shredded cheese and/or reserved chopped raw vegetables, if using.
Enjoying the Holidays While Caregiving
The routine and familiarity of holiday traditions can rekindle fond memories and warm feelings in loved ones with memory loss; however, too much stimulation, noise, and visitors may make them more confused and agitated. The following tips can help reduce stress for a more enjoyable holiday season.
Community Pages
Dot: A play about Alzheimer’s.
Mayo Clinic sponsored the recent Players by the Sea production of “Dot”, a stage play about a family coming to terms with their mother’s memory loss due to Alzheimer’s disease.
Members of the Mayo Clinic Alzheimer’s Disease Research Center community ambassadors and members of the New Town Dementia Friendly Sustainability Committee enjoyed attending the preview performance on Thursday, September 21, 2023.
Community Presentation: On September 26, Dr. John Lucas, Director of the Mayo Clinic ADRC Community Outreach, Recruitment, and Engagement Core, presented the workshop: “Normal Aging Alzheimer’s & Other Memory Disorders. What’s the Difference?” to staff and guests at the Schell Sweet Resource Center in New Town. Everyone enjoyed hearing about Brain Health and learning the warning signs for Alzheimer’s and related dementias. Healthy brain tips and other resources were provided to those attending.
Special thanks to Ms. Shirley Brown for organizing the event, and to Ms. Marie Heath and Rosalind Rawls for their hospitality.
Alzheimer's Association Walk to End Alzheimer's. The Mayo Clinic team was in full force at this year's Walk to End Alzheimer's, held on Nov 4, to support resources and research advances in the fight against AD.
ADRC Scientist Recognized for Research Contributions. Dr. Neill Graff-Radford, who leads the Mayo Clinic Florida ADRC, has been selected by Mayo Clinic for the 2023 Distinguished Investigator award. Most readers will know that Dr. Graff-Radford’s main interest is Alzheimer’s disease and related disorders, and that he has led numerous studies and clinical trials to better understand, diagnose, and treat AD and ADRD.
Through his work in the ADRC, Dr. Graff-Radford has provided hundreds of evaluations for community members concerned about their memory and has spent countless hours in the community raising awareness about brain health, memory loss, and dementia... Congratulations, Dr Graff-Radford!
We invite you to join us and our community partners to talk brain health at one of our upcoming community events. We hope to see you there!
Spread the Word About Brain Health!
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You can also reach out to us if you would like to:
• learn more about obtaining a memory evaluation or diagnosis of dementia
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»Email: FLAMayoADRC@mayo.edu
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