A free teleconference series covering a wide range of topics with leaders in the Alzheimer's community
For National Minority Health Month, our April Alzheimer's Talks highlighted a first-of-its-kind study that used text messaging to boost knowledge about Alzheimer's in African Americans. Can this work point to ways to improve health information-seeking and health literacy more broadly among communities of color?
Stephanie Monroe, Executive Director of our AfricanAmericansAgainstAlzheimer's Network, spoke with Karen Lincoln, PhD, of the University of Southern California's Suzanne Dworak-Peck School of Social Work, about her pioneering work exploring the effectiveness of different health education approaches on Alzheimer's knowledge and attitudes.
Dr. Lincoln's pilot study, BrainWorks, was the first of its kind to use daily texting among African Americans to raise knowledge levels about Alzheimer's and begin to change attitudes toward clinical trials. Her promising results could lead to more patient- and community-centered outreach and recruitment efforts. Her work is another example of innovative uses of technology to better engage and understand patient and community preferences.
Listen to the full conversation, below.
Demystifying clinical trials was the topic of our March Alzheimer’s Talk—how they work, what you need to know and why they’re important. UsAgainstAlzheimer’s Board Member and Author/Caregiver Advocate Meryl Comer moderated an insightful discussion with:
- Reisa Sperling, MD, Harvard neurology professor and project leader of the NIH-funded A4 Study, a first-of-its kind prevention trial in older adults with evidence of early Alzheimer’s but no symptoms
- Geri Taylor, who is living with early-stage Alzheimer’s and participating in a clinical trial, and Jim Taylor, her husband and care partner—both were profiled in a 2016 New York Times article
- Nate O’Keefe, Founder and CEO of Roobrik, which worked with UsAgainstAlzheimer’s to develop a decision tool, Is Clinical Research Right for Us?
Should You Join a Clinical Trial?
As Nate observes, “Almost no one is innately equipped to make an informed decision about this.” You may not be aware of all of the clinical trial options; you may be uncertain about whether changes you’ve noticed are serious, or inertia may keep you from taking the first step. A decision tool, like Roobrik’s, can help. It walks you through questions that can help you understand what kinds of studies might be a good fit for you. Nate says, “Whether you’re the ‘worried well’ or recently diagnosed with Alzheimer’s, this process can empower you to take action. Even taking this small step is an act of heroism.” The decision tool report can help guide a discussion with your doctor and family about clinical trials.
Finding the Right Study
Geri had used TrialMatch to look for studies. Then Jim saw a news article about a Biogen study that seemed just what she wanted – an FDA-approved, double-blind interventional trial. While that meant she might get a placebo instead of an experimental drug, as Jim says, “If you don’t join a clinical trial, you’re on the placebo the rest of your life.”
Dr. Sperling notes that Alzheimer’s clinical trials are getting longer because scientists are trying to intervene earlier, so they follow patients for longer timeframes. To gather such long-term data, researchers try to make it easy to stay enrolled for years—offering more satellite locations, for instance.
Not all studies mean taking an experimental drug. Online studies, phone studies, caregiver studies and others all may help find treatments or better support for families.
Another resource is Antidote’s clinical trial search tool.
Advantages of Being in a Clinical Trial
Jim says the advantages are many: learning more about Alzheimer’s, replacing fear with knowledge, which can lead to better decisions; receiving the very best medical care, since an expert study team follows your health closely; no costs to you (you may even receive a small stipend); an Alzheimer’s research team that knows better than anyone what you’re going through and can answer your questions; and the psychological advantage, the mood boost, of taking action to help find a cure.
Fears & Obstacles
- I don’t want to know: Most Alzheimer’s trials require that you learn your genetic risk or amyloid status. (The DIAN Study does not.) Dr. Sperling sees knowledge as power: “People are scared to know because they think there’s nothing they can do. Clinical trials are a way that you can be proactive—hopefully to help find a successful treatment for you and others in your family. Many are willing to learn their status if they can do something positive with that knowledge.”
- I live far from research centers: TrialMatch sorts by distance. Look for telephone or online studies via ClinicalTrials.gov. Find studies funded or run by the National Institute on Aging at NIH. Search for options through Cleveland Clinic’s Healthy Brains or the Memory Strings Community. Participate in online research: join UsAgainstAlzheimer’s A-LIST.
Will I Qualify?
- Family history: A close relative with Alzheimer’s is unfortunately a strong predictor for the disease. If you have family history but no symptoms, Dr. Sperling suggests a prevention study like the EARLY Trial or the Generation Studies.
- No diagnosis or family history: Dr. Sperling say you can still be of value to a clinical trial. As trials look at earlier stages of Alzheimer’s, more will seek healthy people in their 60s or 70s. Consider signing up for the Alzheimer’s Prevention Trials Webstudy, Alzheimer’s Prevention Registry or Brain Health Registry.
Study Partner’s Role
An Alzheimer’s trial may require participation by a care partner. At some of Geri’s appointments, for instance, Jim shares observations of her cognitive status and functional abilities with the research team.
Knowing Why You Want to Join a Study
Nate emphasizes knowing why you want to join a study: “If you don’t acknowledge the ‘why,’ you may have trouble with smaller decisions along the way.” Motivations include the chance of a treatment/cure for you or a loved one, the hope of preventing disease, honoring a road traveled with a family member, or helping the world generally. Geri finds being in a trial empowering. Alzheimer’s also struck four of her family members, so she says, “For my family, myself and others, I want to be in this fight.”
Hear more questions from listeners and answers from our panelists. Listen to the full conversation below -- or follow Alzheimer's Talks through iTunes Podcasts.
For our January Alzheimer’s Talks, Brooks Kenny, Executive Director of our WomenAgainstAlzheimer’s network, spoke with Dr. Richard Isaacson, founder of the Alzheimer’s Prevention Clinic at NewYork-Presbyterian/Weill Cornell Medical Center. Joining him was Karen Segal, an UsAgainstAlzheimer’s board member who is participating in a research study Dr. Isaacson is leading.
Karen shared her experiences as an Alzheimer’s care partner to her mother and her reasons for joining the study. Dr. Isaacson’s discussed his exciting work helping patients reduce Alzheimer’s risk and his research into lifestyle changes to prevent or delay Alzheimer’s, including a study of Alzheimer’s in women, seeking brain changes that occur long before symptoms do.
One in three cases of Alzheimer’s may be preventable: As with heart disease and stroke, we may never prevent all cases of Alzheimer’s, but you can reduce your risk. Alzheimer’s starts decades before symptoms appear, allowing lots of time to take steps to prevent or delay symptoms. (For the other two of three cases, if we can delay it even a few years, an effective treatment may be available then.)
Lifestyle changes can reduce your risk. Your genes are not your destiny. Modifiable risk factors include diet, exercise, sleep, stress reduction, cognitive engagement, and management of diabetes and heart health. In recent studies, even those with higher genetic risk could delay or prevent cognitive decline through nutrition, exercise, cognitive exercises and managing heart health.
Women, menopause and Alzheimer’s—what’s the connection? Two of three people with Alzheimer’s are women, and it’s not just that women live longer. Dr. Isaacson is studying changes in brain metabolism before, during and after menopause that may offer clues.
Clinical trials put you in the driver’s seat. Karen Segal shared her experience as a participant in Dr. Isaacson’s study: regular bloodwork, cognitive testing, brain imaging, and diet and exercise monitoring. She knows current research can’t save her mother, who has had Alzheimer’s for 15 years, but it may save younger generations: “The first person cured of Alzheimer’s will be in a clinical trial.”
RESOURCES SHARED DURING THE CALL
Alzheimer’s Universe: www.alzu.org Learn more about prevention, treatment, caregiving. Free online lessons & activities. Created by Weill Cornell Medicine, NewYork-Presbyterian and many researchers.
Alzheimer’s Prevention Clinics:
Alzheimer’s Prevention Clinic, NewYork-Presbyterian/Weill Cornell Medical Center, New York, NY
Alzheimer’s Risk Assessment and Intervention Clinic, Univ. of Alabama at Birmingham, Birmingham, AL
Alzheimer’s Prevention Program, Loma Linda University Medical Center, Loma Linda, CA
Center for Brain Health, NorthShore University Health System, Chicago, IL
For our December Alzheimer’s Talks, UsAgainstAlzheimer’s Chairman and Co-Founder George Vradenburg spoke with Lakelyn Hogan, a gerontologist and caregiver advocate at Home Instead Senior Care, where she educates professionals, families and communities on issues that older adults and their families face. At HelpForAlzheimersFamilies.com, visitors can sign up for Lakelyn’s free weekly email, with advice, resources and inspiration from a community of 40,000 caregivers.
This month’s topic was making the holidays enjoyable when a loved one has Alzheimer’s or dementia. Lakelyn offered many tips for families to find joy in this season.
Involve your loved one: Engage your loved one in holiday traditions and festivities. Modify some activities so they can participate. Have other family members help them with decorating, baking or hosting.
Keep everyday routines: Many with Alzheimer’s find a daily routine comforting. Be respectful and stick to their schedule if possible. Adjust times for holiday gatherings and meals so they can keep their routine.
Adapt: Be prepared but flexible. Allow extra time to prepare for outings. Bring your loved one’s favorite music, snacks or activity to gatherings away from home, so they can enjoy something familiar.
Help them reminisce: Many with Alzheimer’s or dementia have sharper long-term memories. Look at family photo albums together. Ask them their memories from past holidays and document their recollections. If they cannot communicate, share your holiday memories.
Use the senses of the season: Engage the senses to help your loved one experience holiday joy. Make treasured family recipes to create familiar scents. Play classic holiday songs or movies, or read religious texts to them.
Make the most of time together: Use this family time to discuss caregiving roles and your loved one’s wishes for the future. If tension or conflict exists, this time can promote forgiveness or healing; a geriatric care manager may be able to help. Give the primary caregiver some respite time to take care of themselves.
Look for signs of cognitive decline: Holiday visits with older relatives offer a chance to observe signs of cognitive decline. Note the condition of the home, the car, their personal appearance, and of their skills around the house.
Thank you to Lakelyn Hogan for great advice on making the holidays happy when a loved one has Alzheimer’s or dementia. To learn more, you can listen to an audio playback or read the transcript of the conversation.
This Alzheimer’s Talks was in collaboration with our newly formed network, VeteransAgainstAlzheimer’s and was moderated by Shawn Taylor, Board Member at UsAgainstAlzheimer’s and President of VA2. Our guest was Dr. David Cifu, Professor and Chairman of the Department of Physical Medicine and Rehabilitation at Virginia Commonwealth University School of Medicine, Senior TBI (Traumatic Brain Injury) Specialist at the U.S. Department of Veterans Affairs, and Principal Investigator of the Veterans Affairs and Department of Defense Chronic Effects of Neurotrauma Consortium (CENC).
Dr. Cifu gave an overview of the research being done at the VA, noting that veterans have a disproportionately higher rate of developing dementias; the goal is to better understand who will develop Alzheimer’s and try to reverse that trend. Dr. Cifu also shared what we all can be doing for better brain health.
Veterans are at a higher risk for Alzheimer’s disease
Veterans face unique risk factors for Alzheimer’s because of their military service. Dr. Cifu discussed some of the reasons, including an aging veterans population and brain injuries. You can read more about this in the issue brief recently released by VeteransAgainstAlzheimer’s: Veterans and Alzheimer’s: Meeting the Crisis Head On
Research with veterans
As part of his research, Dr. Cifu is studying a group of almost 2,000 veterans from the Iraq and Afghanistan conflicts. to look at brain injuries, concussion, PTSD, depression, and alcohol abuse, to see how those and other factors contribute to the risk of getting dementia and Alzheimer’s. He hopes they will be able to develop tests to identify people at risk for Alzheimer’s, and prevent or slow down the disease. If you are a veteran, interested in helping with research click here for more information.
Control what you can; don’t stress the rest
Dr. Cifu advised people to focus on the things they can control, that can reduce risk or slow down the course of dementia: healthy diet; regular exercise, both physical and mental; stress management; and social engagement.
Don’t wait until it’s too late
Dr. Cifu stressed the importance of talking with primary care doctors and, for veterans, registering at VA centers before the onset of symptoms. If you have had brain injuries, PTSD, depression, or anxiety, talk to your doctor and a counselor, because there are treatments and resources available to you.
Thank you to Dr. Cifu for talking with us about his research and work. To learn more, you can listen to an audio playback or read the transcript of the conversation.