A free teleconference series offered by UsAgainstAlzheimer's covering a wide range of topics with leaders in the Alzheimer's community.
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.
The guest on October’s Alzheimer’s Talks was Lisa Genova, a neuroscientist and author whose work explores what it is like to live with neurological diseases and disorders. Her bestselling books include Still Alice, Inside the O’Briens, Left Neglected, and Love Anthony. Still Alice, about a Harvard professor with early onset Alzheimer’s disease, became a highly acclaimed movie.
Lisa Genova talked with George Vradenburg about how she did the research for Still Alice, and how acting and improv classes helped her learn how to truly have empathy for people with Alzheimer’s disease. She also discussed her role as a member of the Alzheimer’s team that recently won the top honors at the XPRIZE Visioneers Summit.
A few key highlights from the talk:
How can you stay connected?
Lisa Genova offered tips that she learned from improv acting classes, that help her have empathy and stay connected to people with Alzheimer’s. For example, join them in their reality. Imagine what it’s like to always be corrected or denied. Instead of correcting or negating, say, “Yes, and” to someone with Alzheimer’s. They will remember how you made them feel.
“What we really want while we’re waiting for a cure is some way to stay connected to our loved ones who have Alzheimer’s, to continue to have a meaningful relationship with them .. to continue to have connections”
Early diagnosis is important
There is relief in knowing and understanding what is going on. And while there is currently no treatment or cure, there are things you can do to slow the progression, both through medicine and through lifestyle—diet, exercise, sleep, and stress management. Also, a diagnosis will push you to plan for the future with your family, financially and emotionally.
What’s wrong with the current research process?
The structure of how research is funded in academia slows the process and does not encourage collaboration. The same is true in industry, where it costs over a billion dollars and twelve years to get a drug through clinical trials, so they tend to focus on one drug at a time and do not share study results, so one company could be testing a drug that has already failed for another company.
How will the XPRIZE help?
The Alzheimer’s Team, which includes Lisa Genova and George Vradenburg, received top honors at the XPRIZE Visioneers Summit. They are now working on the exact competition, with a cash prize for a way to detect the presence of the disease before symptoms occur. Anyone from any discipline can enter; the focus is on identification of Alzheimer’s early enough to intervene.
Thank you to Lisa Genova for talking with us about her work, her writing process, and the XPRIZE. To learn more, you can listen to an audio playback or read the transcript of the conversation.
September’s Alzheimer’s Talks focused on the importance of clinical trials, particularly to better understand the motivations and barriers of participation among diverse communities. This call was hosted by Jason Resendez, director of the LatinosAgainstAlzheimer’s network and Dr. Goldie Byrd, Director of the Center for Outreach in Alzheimer’s Aging and Community Health at North Carolina A&T State University.
Dr. Byrd’s work focuses on Alzheimer’s in African American communities, both genetic research and also her center’s priority on community engagement, specifically to involve underrepresented populations in clinical trials and research. They were joined by two very special guests, Daisy Duarte and Valerie Smith, both of whom have volunteered for clinical trials and are also caregivers for loved ones with Alzheimer’s or memory loss. They shared their experiences, and offered insights into the importance of taking part in research and engaging caregivers and patients throughout the research process.
A few key highlights:
We need to focus on under-represented communities in research
Alzheimer’s occurs significantly more often in African Americans and Latinos than in non-Hispanic whites, yet they are underrepresented in clinical trials and research. Community engagement, outreach, and education are crucial to involve underrepresented populations in clinical trials. We need everyone involved so we can make sure a possible treatment works for different groups.
“We’ve been able to advance the science in so many disease areas and we really need to do the same in Alzheimer’s and that takes the engagement of all communities, particularly those who are underrepresented” – Jason Resendez
Better outreach could mean more participation in clinical trials
Studies have often not had diverse and representative samples. Dr. Goldie Byrd’s team has done significant work to better understand what it would take for individuals to participate in a study and the barriers to participation – especially by establishing trust and reducing stigma.
Other suggestions from our guests to increase participation include: involving family members; getting local organizations involved; adding incentives to participate; integrating culture-based activities like food or music; using language that everyone can understand; increasing awareness about Alzheimer’s among younger members of the community; and the importance of the doctor who diagnoses and individual in sharing information about clinical trials.
Our guests decided to participate in a clinical trial to help researchers better understand Alzheimer's and to speed the search for a cure, particularly for their family members.
“I hope that this clinical trial that I’m in is the one that finds a cure” – Daisy Duarte
Ready to volunteer for a study?
Check out Antidote - a tool that can quickly match you with clinical trials in your area.
Your feedback matters
The audience during the call, provided their input on three questions relevant to the discussion:
1) Which type of Alzheimer’s related research would you most be interested in participating in?
2) Would the inclusion of culture-based activities into Alzheimer’s research make them more appealing to you? (ex. salsa dancing, music, traditional foods)?
3) Having learned about or seen the impact of Alzheimer’s on family and friends, what one thing concerns you the most about getting the disease?
Preliminary results are that people are most interested in participating in Alzheimer’s related research around lifestyle modification to prevent Alzheimer’s disease, they would be interested in the inclusion of culture-based activities, and they are most concerned that there are no treatments or cures yet (full results can be found in the transcript).
If you missed the call, please click here to provide your answer to these three questions.
Thank you to Dr. Byrd, Daisy Duarte, and Valerie Smith for sharing their experiences with clinical trials and their ideas for engaging African Americans and Latino populations. This call was in collaboration with the Alzheimer’s and Dementia Disparities Engagement Network (ADDEN), which is a program that is partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award.
To learn more, you can listen to an audio playback or read the transcript of the conversation