A free teleconference series offered by UsAgainstAlzheimer's Network covering a wide range of topics with leaders in the Alzheimer's community.
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
Dr. Laurie Ryan was our guest for the June Alzheimer’s Talks. Dr. Ryan is Chief of the Dementias of Aging Branch in the Division of Neuroscience at the National Institute on Aging, which is part of the National Institutes of Health (NIH). At the National Institute on Aging, she directs Alzheimer’s disease clinical trials research.
Dr. Ryan discussed efforts and plans to improve the pace and quality of clinical trials and clinical research, with an emphasis on better strategies for recruiting volunteers into trials. The NIA currently has 59 ongoing clinical trials, many in early-stage clinical drug development, as well as a number of trials looking at non-pharmacological or lifestyle interventions.
A few key highlights:
Goals have been set to improve the pace and quality of clinical trials
We have a national goal to prevent and treat Alzheimer’s disease by 2025. The NIA has set recruitment and citizen engagement milestones to improve recruitment into clinical trials/clinical research to help meet the national goals. Key milestones include: Partnering with other federal agencies to create public education campaigns; providing supplemental funding to research studies to help build diverse community partnerships; and using technology to reach more individuals and to assess individuals in their own communities.
The NIH will also be requiring a single institutional review board of record for multi-site trials for any applications after September 2017 to help streamline the process.
We need more volunteers
There is a huge need to recruit large numbers of volunteers, as they typically need to screen ten-times the number of participants to fill each study. Large-scale studies, like the A4 and Generation study, are important but can take years to find enough participants. Special focus is on underrepresented and minority populations, to make sure that potential therapies work for everyone.
How can you participate?
Visit these websites to look for clinical trials that might be a good fit for you:
Thank you to Dr. Ryan for sharing with us all that the NIA is doing to advance recruitment for clinical trials. To learn more, you can listen to an audio playback or read the transcript of the conversation.
Dr. Howard Fillit joined George Vradenburg for this month’s Alzheimer’s Talks to discuss a new report he co-authored, “Single Endpoint for New Drug Approvals for Alzheimer’s Disease”. The report proposes a change in how we define a clinically meaningful drug and therefore the framework for FDA approvals of a possible Alzheimer’s treatment.
It’s time to change the way we measure a drug’s effectiveness.
Standards were set based on decades-old knowledge, and drugs were deemed effective if there were improvements in both cognition and function, co-primary endpoints.
Several advances mean standards need to change.
New developments in biomarkers, such as PET scans, mean that scientists can now determine, with certainty, if someone has Alzheimer’s disease or not. This was not the case 40 years ago. Now, when people take part in clinical trials, we know they have Alzheimer’s disease and the results of the trials are much more relevant.
We have to set realistic expectations.
If we don’t create realistic expectations for the clinical meaningfulness of a drug, we may reduce investment in research. The voice of the patient and caregiver is also crucial to determine what is clinically meaningful.
Other drugs, for conditions such as heart disease, have a single primary endpoint. For Alzheimer’s disease, composite cognition might be the only clinical primary endpoint needed in certain drug trials as there is a fairly linear relationship between loss of cognition and loss of function. A modernization of standards for Alzheimer’s drugs, to make them meaningful and approvable, is necessary.
Prevention is a priority.
Improvements in public health have reduced risk factors. For example, more exercise, better diets, and better management of hypertension and diabetes have been shown to reduce Alzheimer’s risk.
The Alzheimer’s Drug Discovery Foundation has a website called Cognitive Vitality that evaluates the efficacy, safety, and evidence of possible preventions, including supplements and diets.
If you missed the talk—or if you’d like to hear it again—you can listen to an audio playback or read the transcript of the conversation.