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MIND Matters | Quarterly Newsletter | Summer 2021

By Commentary, Community Events, COVID-19, In the News, Participants

Message from the Director

Dear Friends of UCI MIND,

The summer of 2021 brought the Tokyo Olympics of 2020. Our UCI MIND researchers continue to earn gold medals for their work in fighting Alzheimer’s disease and related disorders (page 1). Gold medals also go to Virginia Naeve and Steve O’Leary for establishing a remarkable resource for caregivers, Spotlight on Care (page 4), available through UCI MINDCast. Spotlight on Care is made possible by the generous support of Stephen Hamill and his family (page 5). And our REMIND trainees were also shining stars this summer—launching a new program to inspire local young people to consider careers in geriatric science and clinical care (page 6). The program received generous support from Joan and Don Beall and is anticipated to be held annually.

The summer closes with uncertainty about the delta variant of the COVID-19 pandemic. We at UCI MIND are closely monitoring this situation, especially as it relates to our various public activities. We are striving to bring as much back as soon as possible, but balancing with the need to protect our community. Many of our fall events, including our annual research conference, will again be virtual (page 8).

These are interesting, albeit turbulent times. This is true for the field of Alzheimer’s disease research as well. The approval of aducanumab for treatment of mild cognitive impairment (MCI) and mild AD dementia is an important milestone, more than 18 years in the making (page 3). Yet, the approval has been controversial and several important questions remain unanswered. The coming months will bring new information. We hope that you will stay tuned to our UCI MIND blog and other outlets to stay abreast of the most recent advances. Stay safe and be well.

Joshua D. Grill, PhD
Director, UCI MIND

 

 

 


UCI MIND in the spotlight

Vivek Swarup, PhD (top left), María M. Corrada, ScM, ScD (lower left) and trainee Marina Ritchie (right) presented their work at AAIC.

This summer, UCI MIND investigators are receiving international attention for their innovative research and progress towards an end to Alzheimer’s disease (AD). 

On July 21, the NIA released “Transforming Research to Prevent, Detect, Treat, and Provide Better Care for Dementia,” the NIH’s professional judgment budget for Alzheimer’s disease and related dementias progress report that features summaries of key recent studies and recounts new advances spurred on in part by NIH funding. 

Included is work from several prominent UCI MIND groups and investigators, like the MODEL-AD consortium, which recently published a highly visible article in Nature Communications of this multidisciplinary team’s work to develop improved mouse models for AD (Baglietto-Vargas et al., Nature Communications 2021). The ABC-DS study, a national network led in part by UCI investigators that aims to characterize Alzheimer’s disease biomarkers in people with Down syndrome, was acknowledged for their leading work, and progress toward elucidating the brain changes with age in this important population.

The progress report noted the outstanding work of the EXERT clinical trial, led in part by UCI MIND founding director Dr. Carl Cotman, to pivot amid the COVID-19 pandemic and continue to collect cognitive testing data remotely. 

The report noted a NIA-sponsored meeting, convened in June by the National Academies of Sciences, Engineering, and Medicine, focused on preclinical AD that included UCI MIND Director, Dr. Joshua Grill. A variety of training efforts were also highlighted in the NIA report, including the IMPACT-AD training course that includes multiple UCI MIND faculty. The report also cited published work by UCI MIND investigators including Drs. Mark Mapstone, Liz Head, Ira Lott, Carl Cotman, and David Sultzer. These research advances are being used to justify the need for increased federal funding to support AD basic science, clinical research, and education. 

Several UCI MIND scientists also gathered in late July in Denver, CO to present their work at the annual Alzheimer’s Association International Conference (AAIC). 

This year the event was offered as a hybrid program, attracting viewers from across the globe. Dr. Vivek Swarup presented his work on gene expression changes in AD. Dr. Maria Corrada presented new data on predicting cognitive changes in the oldest old. Dr. Grill spoke as part of a panel on the implications of approved drugs on the future of AD clinical trials (page 3) and then on the safety of biomarker disclosure among cognitively unimpaired persons. Numerous UCI MIND investigators and trainees presented posters, in person or online, as part of this important meeting. 

 


Aduhelm® update

On June 7, the FDA granted accelerated approval to Biogen’s aducanumab (Aduhelm®) for lowering brain amyloid levels in Alzheimer’s disease. As we have followed closely through our UCI MIND outlets, this decision was controversial on multiple levels. Since the decision, the FDA has narrowed the indication for the drug from “Alzheimer’s disease” to patients with mild cognitive impairment (MCI) and mild Alzheimer’s disease dementia – the disease severity of patients enrolled in the clinical trials of this drug. But several important issues remain unresolved. Key among these is uncertainty related to coverage by Medicare and private insurers. The Centers for Medicare and Medicaid Services launched an open comment period on July 12 as part of a National Coverage Determination. This will be a key event in understanding the clinical use of aducanumab. Other looming events are the publication of the Phase 3 trials of aducanumab and announcement of the design of the Phase 4 trial required by the FDA to determine if aducanumab’s ability to lower brain amyloid is indeed clinically effective in slowing 

disease progression. Two other compounds have been granted breakthrough status by the FDA, lecanemab (Eisai and Biogen) and donanemab (Eli Lilly). These drugs also have excellent data related to lowering brain amyloid and have entered Phase 3 efficacy trials. Lecanemab is also being tested in the AHEAD prevention trial and donanemab will begin a similar prevention trial in the coming year. 

In total, these developments are exciting even if they bring new challenges. Ultimately, the field needs to build upon these events and determine the fastest and most effective ways to achieve the ultimate goal—treatments that alone or in combination can stop the progression of Alzheimer’s disease or prevent symptoms completely. 


Spotlight on Care: A podcast for caregivers

Earlier this year, two longtime friends of UCI MIND, Virginia Naeve and Steve O’Leary, started a podcast to help people navigate the challenges that come with being a caregiver for a person living with dementia. They invite guests with unique experiences and expertise to tell their stories and provide listeners with advice for caregiving. Twelve episodes are currently available, and new episodes will be added every month. 

In episode 2, Bill Edwards discussed with the co-hosts the challenges of recognizing the first symptoms of Alzheimer’s disease. They reflected on the frustration that can come with navigating life with a loved one with undiagnosed dementia. 

In episode 9, Mark Wilson, a retired human resources executive shared his experience finding professional support as he cared for his mother at home. 

He helped listeners understand the differences between an agency and a registry, what to look for in a good caregiver, and how best to integrate new caregivers into the home. 

Husband and wife, Lynda Everman and Don Wendorf, PsyD, were interviewed in episode 8 to discuss the importance of using a person-centered approach and empathy when caring for loved ones living with Alzheimer’s disease. They recalled their own struggles and successes serving as caregivers for their family members living with dementia. 

And former UCI MIND Associate Director of Education Chelsea Cox joined the podcast in episode 5 to share her very personal experience of helping care for her father, who was diagnosed with early-onset Alzheimer’s disease while she was in high school. 

To listen to these episodes and others from Spotlight on Care, go to: https://mind.uci.edu/mindcast/#spotlight. If you like the podcast, please rate, review, subscribe on your favorite podcast app and most importantly, share it with your friends and family. 


 

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Stephen Hamill supports
UCI MIND’s podcast

Stephen Hamill is the founder of Shared Leadership Group LLC and a UCI class of ‘71 alum. He and his family generously donated to UCI MIND to fund our new caregiver podcast, Spotlight on Care. We sat down with Stephen to discuss what motivates him to support UCI MIND. 

You are an Anteater. When were you at UCI and what was your major? 

I attended Fall 1968 through Spring 1971 and majored in Comparative Culture. 

What did you do after graduation? 

I received a Master’s degree in Public Administration and a Juris Doctor and worked in County government administration. I started a law practice and founded a public finance and services management company. 

What motivates you to support Alzheimer’s research? 

My Dad, a WW II veteran and successful business person, was diagnosed with Alzheimer’s. We watched helplessly while this disease deprived him of his personality and all the things in life that brought him joy. He passed in 2007. The reality is that we lost our Dad long before the complications of the disease claimed his life. 

Why do you donate to UCI MIND? 

UCI MIND has gathered the talent and resources to be on the cutting edge of global progress, treatment and, hopefully someday, a cure of this devastating disease. 

You have chosen to support Spotlight on Care. Is there something special about this topic for you? 

Caregivers are equal Alzheimer’s victims, who with patience and empathy bear the human toll and burden of the disease. The support, respite and community available through Spotlight on Care are much needed resources for those on the Alzheimer’s frontline. 

 

 


Beall Scholar Program hailed as a success

During the inaugural Beall Scholar Program, the students heard lectures from faculty, participated in virtual laboratory tours, and even got a firsthand look into brain research, all via Zoom.

With the support of Don and Joan Beall, UCI MIND and REMIND (Research & Education in Memory Impairments and Neurological Disorders) hosted 16 rising 12th graders from various Orange County high schools for a week-long virtual education program designed to encourage students from diverse backgrounds to pursue careers in geriatric healthcare and research. 

The event was held in mid-July and featured presentations by UCI MIND faculty members (Drs. Craig Stark, Elizabeth Head, Andrea Tenner, and Steve Tam) and trainee led demonstrations like those from Amanda McQuade (Blurton-Jones lab) and Dr. Nicole Schartz (Tenner lab). The program also consisted of several panel discussions on topics like dementia caregiving, undergraduate STEM majors at UCI, and career opportunities in healthcare. Representatives from various campus organizations volunteered to speak to the students about the abundance of unique STEM opportunities available to undergraduates at UCI. 

Overall, students had an opportunity to learn cutting edge brain research, ask questions, and network with world famous faculty members and rising stars in the world of neuroscience. Additionally, the 16 students were matched with REMIND trainees who will guide them during their senior year as they transition into the next chapters of their lives. 

The students overwhelmingly praised the program. Here is what they had to say: 

“It was an honor to be able to engage in such a well-developed and comfortable setting. It was amazing seeing how there was diversity, different pathways, students’ experiences, and recommendations! I hope this program continues in the future as I truly believe it has created a big impact on society.”  – Scholar 

“Before this program, I didn’t know much about Alzheimer’s disease and didn’t have much interest in the field either. However, the talks during the week completely changed my perspective and I am determined to get involved in research that relates to Alzheimer’s disease in college or even in high school. I want to pursue biomedical engineering or pharmaceutical sciences, and I am inspired to create medical devices and medications to help people with Alzheimer’s and dementia.” – Scholar 

“It’s truly a wonderful opportunity for all types of students.” -Scholar 

“I really enjoyed every part of the program but I would say my absolute favorite were the lab tours, ‘hands-on’ demonstrations and applications. Those parts allowed me to see everything in action and really made me feel like I was there experiencing everything first-hand.” -Scholar 

 


 

Welcome Claire & Romina,
best wishes to Danny Harper

In July we welcomed two new staff members, Romina Romero, PhD (right, top) and Claire Ghazal (right, center). Dr. Romero will manage the regulatory affairs for the Alzheimer’s Disease Research Center. She received her doctorate in Public Health from the University of California, San Diego. Dr. Romero has been with UC Irvine since 2019 where she worked in the School of Medicine as a staff research associate. Ms. Ghazal joins UCI MIND’s Administrative team, where she will play a variety of key roles in the Institute’s operations. She worked previously at the Institute on Aging at Portland State University, where she earned a graduate certificate in gerontology. We’re honored to have Romina and Claire join the team and bring their expertise to UCI MIND. 

This summer we say good bye to Danny Harper (right, bottom) who has been the Senior Director of Development for UCI MIND since 2017. Danny’s dedication to end Alzheimer’s disease remains steadfast as he joins the national organization Cure Alzheimer’s Fund as their Senior Philanthropic Advisor. A search for a new leader of UCI MIND’s development efforts is underway. 

 


 

UCI MIND accolades

UC Irvine Alumni Carol and Eugene Choi received the UC Irvine Alumni Association’s 2021 Lauds and Laurels Extraordinarius Award for their generous contributions to support undergraduate learning at UCI.

Dr. Claudia Kawas, Principal Investigator for the 90+ Study and Professor of Neurology will receive the UC Irvine 2021-2022 Academic Senate -Better World Award which awards faculty members, “whose professional contributions have positively influenced the world community in an extraordinary manner.” 

UC Irvine Alumni Dr. Charles Quilter, who with his wife Ann is a consistent supporter of UCI MIND, was recognized as a recipient of UC Irvine Alumni Association’s 2021 Lauds and Laurels Distinguished Alumni Award for his outstanding personal and professional achievements. 

Dr. Leslie Thompson, the Donald Bren and Chancellor’s Professor of Psychiatry and Human Behavior won the 2020 Chan-Zuckerberg Initiative Collaborative Pairs Pilot Project Award to study RNA biology in Huntington’s disease. 

 


 

Upcoming Events

Ask the Doc Video Series 

Guest Experts from UCI MIND 

New Episodes Monthly 

UCI MINDcast | mind.uci.edu/mindcast 

 

Spotlight on Care Podcast Series 

Steve O’Leary, Virginia Naeve, & Guests 

New Episodes Regularly 

UCI MINDcast | mind.uci.edu/mindcast

 

 

Past educational sessions are archived on UCI MINDcast and YouTube

OC COVID-19 Resources

Facility for COVID-19+ Dementia Patients
Alzheimer’s OC | covid@alzoc.org

ASSIST Program for Isolated Seniors
UC Irvine | 714.497.0315

Virtual Caregiver Support Groups
Alzheimer’s Association | 800.272.3900
Alzheimer’s OC | 844.435.7259

Food, Housing, Financial Support
211OC | Call 211 or Text Zip Code to 898-211

In Home Supportive Services (IHSS) Hotline
OC Social Services Agency | 714.825.3000 (Dial 4)

Mental Health Support
NAMI Warm Line | 877.910.9276
New Hope Crisis Hotline | 714.639.4673

 


 

Download Newsletter >

 

Donate to UCI MIND >

 


 

CONTACT US

General Information
mind.uci.edu
ucimind@uci.edu

Giving Opportunities
949.824.3793
ddharper@uci.edu

Education & Outreach
949.824.9896
mwitbrac@uci.edu

Research Participation
949.824.0008
research@mind.uci.edu

MIND Matters | Quarterly Newsletter | Spring 2021

By Commentary, Community Events, COVID-19, In the News, Participants

Message from the Director

Dear Friends of UCI MIND,

Spring has sprung and there is much to look forward to. COVID-19 infections remain low in Orange County. We are grateful to our colleagues from UCI Health who have done an incredible job of caring for people during the pandemic and navigating us toward an end through well-organized vaccination programs. We are planning resumption of our pre-pandemic research activities. The campus has reduced restrictions on in-person research while maintaining essential safety parameters. There is a collective sense of eagerness to “catch-up” on work delayed by the pandemic. This will include UCI MIND’s signature study, the longitudinal study of the Alzheimer’s Disease Research Center, and exciting observational research by renowned investigators such as Dr. Dan Nation (p 4). Research involving investigational treatments (clinical trials) has continued through the pandemic and we’re anticipating new trials to begin soon. A decision is imminent from the Food and Drug Administration about the potential approval of Biogen’s aducanumab—a monoclonal antibody against the beta amyloid protein (p 1).

As we’ve outlined before, this decision has produced controversy and consternation in the field. Whatever the decision, readers can expect that UCI MIND will be ready to answer questions about “Where do we go from here?” And we’re especially excited to answer these questions and more when we resume in-person community educational programs, which we hope to do soon. Dr. Megan Witbracht (p 7) will help lead these efforts, filling the void left by the departure of Chelsea Cox, who will begin graduate studies in the fall. Community education remains a mainstay of our work and is supported by myriad partnerships with Orange County organizations and remarkable leaders such as Carol Choi (p 5) and Joan and Don Beall (p 6). These individuals have enabled new efforts to further UCI MIND’s mission. We are grateful to them and eager to get back to normal.

 

Joshua D. Grill, PhD
Director, UCI MIND

 

 

 


What are monoclonal antibodies?

Monoclonal antibodies are proteins made in the lab that act like our immune system and fight off harmful pathogens.

 Scientists are exploring ways to leverage the power of antibodies to help in the fight against Alzheimer’s disease. But what is an antibody? Antibodies are a type of protein made by our immune system to help defend against disease. They work by recognizing a foreign body like a virus and signaling the immune system to destroy it. Antibodies can also be made in the laboratory for use as treatments. Monoclonal antibodies recognize foreign invaders in a single location and are already used to treat a variety of diseases from rheumatoid arthritis to some cancers. 

Since the early 2000’s, researchers have been studying whether immunotherapies, including monoclonal antibodies, could be effective treatments for Alzheimer’s disease (AD). The first monoclonal antibody tested in human clinical trials, bapineuzumab, slowed the accumulation of amyloid plaques in the brains of people with AD but did not affect cognitive decline and the trials were stopped in 2012. To date, over a dozen different antibodies have been examined in human trials for AD. They differ in where they attach on the target protein and in the type of protein they target. For example, some antibodies target the tau protein in neurofibrillary tangles while others target the amyloid beta protein in neuritic amyloid plaques. 

Several monoclonal antibodies are currently being tested in human clinical trials including solanezumab, gantenerumab, aducanumab, donanemab and lecanemab (the “mab” at the end of name means “monoclonal antibody”). Some, such as solanezumab, bind to soluble amyloid beta in the brain and reduce the free form of the protein. Others, such as aducanumab and lecanumab, appear to reduce or even remove amyloid plaques from brain tissue. 

Data released from Biogen’s Phase III trials of aducanumab and Eli Lilly’s Phase II trial of donanemab have suggested that some of these monoclonal antibodies may have a disease modifying effect in symptomatic AD. While Biogen is currently seeking FDA approval (a decision is expected in June 2021), Eli Lilly is in the process of conducting a Phase III trial of donanemab to test if the drug is safe and effective in a larger group of people. Results from multiple trials of Eli Lilly’s solanezumab and Roche’s gantenerumab have been mixed but there is recent evidence suggesting that the drugs may be most effective when used at higher doses and earlier in the disease process. A Phase III study of solanezumab in preclinical AD (older people who are cognitively unimpaired but have evidence of AD brain changes) called the A4 Study is ongoing and is expected to be completed in 2022. The AHEAD Study is a new trial here at UCI that will test lecanemab in preclinical AD. Read more about this study in our past newsletter at mind.uci.edu/summer2020. 

Approval of any disease modifying treatment for AD would dramatically change the landscape of clinical care and Alzheimer’s research. Yet none of the drugs tested have been shown to stop or reverse disease progression. These drugs also carry risks and inconveniences. Most antibodies require at least monthly infusions and careful tracking for safety. In other words, even with any new FDA approval, there will still be need for safer, more convenient, and more effective drugs. Nonetheless, progress is being made and important milestones may be on the horizon. 

 


How does heart health impact the brain?

Q&A with UCI MIND faculty member, Daniel Nation, PhD, Associate Professor of Psychological Science in the UCI School of Social Ecology. He earned his PhD in clinical health psychology from the University of Miami and completed residency in neuropsychology and a postdoctoral fellowship training in biological psychiatry and neuroscience at UC San Diego. Dr. Nation’s research examines the role of vascular factors in cognitive decline and Alzheimer’s disease with an aim to improve early detection and identify targets for potential new therapies.

How are our hearts and brains connected? 

Nation: They’re actually quite intimately connected. The brain requires tons of blood flow, much more than most other organs in the body. So, the supply of blood coming from the heart and the blood vessels is very important for brain function. It’s thought that the brain has up to 400 miles of tiny micro vessels that provide nutrients to brain cells to keep them functioning normally, and so this means it’s very important that the vessels stay healthy in order for the brain to stay healthy. 

What is the “blood brain barrier” and why is it important to Alzheimer’s research? 

Nation: The brain is a special organ that has to keep a special environment to allow for communication between brain cells. For that signaling to work properly, the brain has to be sealed off from the blood, which is a different type of environment. So, a bunch of cells wrap the brain to protect it, and if that barrier breaks, blood vessels begin to leak into the brain tissue. Researchers think this could trigger the degeneration of the brain, similar to what we see in Alzheimer’s disease and other forms of dementia. In fact, in a series of major studies we have recently discovered that the memory centers in the brains of older adults will actually show leakiness in the vessels. It seems to be an independent process that contributes to memory decline in older adults, separate from the sticky amyloid proteins that build up in the brain as part of Alzheimer’s disease. 

What is your lab learning about cardiovascular contributions to Alzheimer’s disease? 

Nation: Our research is focused on the functioning of the blood brain barrier and how micro vessels help clear waste products from the brain and help provide nutrients to brain cells. We have two main projects that we’re very excited about. The first involves new technology to help us better study these micro vessels in the brain. We’re using this technology to see if we can detect early blood vessel problems in cognitively healthy older adults to try to identify at a very early stage those who may be at risk for future cognitive impairment. Our second project is studying whether stem cells in the blood that naturally support and protect vessels are also preventing people from developing cognitive problems. Again, with an eye toward finding people who have a deficiency in those stem cells. We hope this will lead to treatments that could target deficient cells and help protect vessel health in older adults. 

What are your next steps? 

Nation: Right now, we’re working on identifying these very early biological markers that help identify blood vessel dysfunction. After we identify people with no cognitive problems but abnormalities in blood vessels, we need to tailor treatments to fix those abnormalities and hopefully prevent or delay cognitive decline. This work will lead to clinical trials of a totally new approach from what is currently being done. I think that will be exciting and hopefully lead to some positive results. 

To learn more about Alzheimer’s and dementia research, visit mind.uci.edu/mindcast


Carol Choi named District 74 Woman of Distinction

 

Philanthropist Carol Choi photographed by Steve Zylius/UCI

UCI MIND’s A December to Remember Gala on December 5, 2020, exceeded expectations in every way. The event took place virtually for the very first time amid the COVID-19 pandemic, reaching over 850 viewers. Motivated by personal stories, world-class entertainers, and enticing auction items, donors gave over $300,000 toward UCI MIND’s vision to rid the world of Alzheimer’s disease and related dementias. 

“Not only did viewers offer UCI MIND an overwhelming amount of support through their donations, they also offered rave reviews of the broadcast,” said Chair of the Gala Committee, Virginia Naeve. “It was an honor to work with such dedicated committee members who helped produce a powerful virtual event benefiting such an important cause.” 

The online broadcast, co-hosted by director Joshua Grill and auctioneer Zack Krone, featured performances from Justin Willman, creator of the hit Netflix series Magic for Humans, and Ashley Campbell, singer-songwriter and daughter of the late Glen Campbell. Both performers shared the impact of Alzheimer’s disease on their own lives, making their segments as poignant and powerful as they were entertaining. 

Though the Gala has passed, it can still be viewed on YouTube, and donations can be made online here.

 


 

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UCI MIND & REMIND to launch inaugural Beall Scholar Program

UCI MIND’s trainee-led organization, REMIND (Research & Education in Memory Impairments & Neurological Disorders), consists of predoctoral and postdoctoral leaders committed to mentorship and collaboration in the field of neurodegenerative disease research. To improve treatment and care for diverse communities impacted by Alzheimer’s disease and related disorders, there is an urgent need to nurture a diverse future workforce of scientists and healthcare providers dedicated to solving this health crisis. 

In an effort to address this need, UCI MIND and REMIND have partnered with philanthropists Joan and Don Beall to launch the inaugural Beall Scholar Program. The program will engage diverse students from local high schools in research and education on Alzheimer’s disease and dementia to inspire future academic and career choices in STEM (Science, Technology, Engineering and Mathematics). The program will select 10-15 eleventh graders for a week-long summer session of interactive educational seminars, tours, and panels led by REMIND trainees and UCI MIND faculty members. The program aims to provide skills and experiences that enhance students’ opportunities when applying to college, especially for majors focused on aging, neuroscience, and healthcare. 

To learn more, email remind@uci.edu or visit mind.uci.edu/team/remind 


UCI MIND welcomes new Associate Director of Education

UCI MIND is excited to welcome Megan Witbracht, PhD, to lead community outreach and education programs for the Institute. Dr. Witbracht joined UCI MIND in 2015 to manage regulatory processes for the Alzheimer’s Disease Research Center (ADRC). For the past three years, she has worked closely with the Outreach, Recruitment and Engagement (ORE) Core of the ADRC, led by Joshua Grill, PhD, to conduct independent research on recruitment and retention to Alzheimer’s disease clinical trials. 

Dr. Witbracht completed her PhD in Nutritional Biology from the University of California, Davis and her postdoctoral training at the USDA Western Human Nutrition Center in Davis. She replaces Chelsea Cox, who has served as Associate Director of Education for UCI MIND since 2015. Chelsea will be starting a PhD program in Health Behavior and Health Education at the University of Michigan School of Public Health in the fall where she will study implications of sharing Alzheimer’s disease risk information. 

 


 

Upcoming Events

Ask the Doc Video Series
Guest Experts from UCI MIND
New Episodes Monthly 
UCI MINDcast | mind.uci.edu/mindcast

Spotlight on Care Podcast Series
Steve O’Leary, Virginia Naeve, & Guests
New Episodes Monthly
UCI MINDcast | mind.uci.edu/mindcast

32nd Annual SoCal Alzheimer’s Disease 
Research Conference
Friday, September 10, 2021
Free Virtual Event | conference.mind.uci.edu

 

Past educational sessions are archived on UCI MINDcast and YouTube

OC COVID-19 Resources

Facility for COVID-19+ Dementia Patients
Alzheimer’s OC | covid@alzoc.org

ASSIST Program for Isolated Seniors
UC Irvine | 714.497.0315

Virtual Caregiver Support Groups
Alzheimer’s Association | 800.272.3900
Alzheimer’s OC | 844.435.7259

Food, Housing, Financial Support
211OC | Call 211 or Text Zip Code to 898-211

In Home Supportive Services (IHSS) Hotline
OC Social Services Agency | 714.825.3000 (Dial 4)

Mental Health Support
NAMI Warm Line | 877.910.9276
New Hope Crisis Hotline | 714.639.4673

 


 

Download Newsletter >

 

Donate to UCI MIND >

 


 

CONTACT US

General Information
mind.uci.edu
ucimind@uci.edu

Giving Opportunities
949.824.3793
ddharper@uci.edu

Education & Outreach
949.824.9896
mwitbrac@uci.edu

Research Participation
949.824.0008
research@mind.uci.edu

MIND Matters | Quarterly Newsletter | Winter 2021

By Commentary, Community Events, COVID-19, In the News, Participants

Message from the Director

Happy New Year, Friends of UCI MIND!

For many of us, a New Year brings the promise of fresh starts and new beginnings. In 2021, it also means a welcomed good-bye to a very long 2020. Despite the challenges that 2020 brought, it also brought progress that must now continue in 2021. This includes progress in social justice, progress in fighting the COVID-19 pandemic, and progress in research to rid the world of Alzheimer’s disease and related dementias. UCI MIND is committed to contributing to further progress in each of these areas.

Though the COVID-19 pandemic has complicated all aspects of life, there is light at the end of the tunnel. As we emerge from a troubling year, we are focused squarely on returning all studies to their full activity levels as soon as we can safely do so. We will also not lose sight of the social movements that accelerated and reached new heights in 2020. UCI MIND is supportive of the Black Lives Matter movement and inclusiveness and diversity in research. UCI MIND has long been a national hub for research in people with Down syndrome, who are understudied in many areas of research. Our efforts also focus on including people of all races, ethnicities, and socioeconomic statuses in research. Many ongoing efforts aim to increase our reach and inclusivity, such as the launch of UCI MINDcast.

Now, it is time to turn the page from 2020 and look optimistically toward our future. On the backs of research advances, we hope this future will bring an end to the COVID-19 pandemic. On the backs of research advances, we hope this future will also bring an end to Alzheimer’s disease and related dementias.

 

Joshua D. Grill, PhD
Director, UCI MIND

 

 

 


Light at the end of the tunnel

 

Though it will take time, the end of the pandemic is in sight with two FDA-approved COVID-19 vaccinations being distributed daily. As of January 11, Orange County has approved vaccinating prioritized groups, including people aged 65+. 

The County opened its first regional COVID-19 Super POD (Point-of-Dispensing) site to residents at Disneyland on January 13.  A second site at Soka University started mass vaccinations on January 23. Vaccines are available at these sites by appointment only through othena.com. Once registered, individuals will be notified via app or by email when appointments become available and then can sign up for times at either location. 

Additionally, UCI Health offers vaccinations at the UCI Bren Events Center on campus for UCI Health patients by appointment only, following the same County guidelines for prioritized groups.  Vaccine appointments can be made directly through UCI Health’s MyChart or by going to vaccine.ucihealth.org.

Is it safe to get vaccinated?

Neither of the authorized COVID-19 vaccines, nor those currently in U.S. clinical trials, contains the live virus that causes COVID-19. This means the vaccine cannot make you sick with COVID-19. Vaccines teach our immune systems to recognize and fight the virus, a process that can cause symptoms such as fever, headache, chills, aches. These symptoms are normal and are a sign that the body is building protection against COVID-19. 

Both COVID-19 vaccines were granted emergency approval because they met high U.S. safety and efficacy standards. Large clinical trials, involving tens of thousands of people who were randomly assigned to active vaccine or placebo, demonstrated that each of the two available treatments are >90% effective in preventing COVID-19. And importantly, individuals ranging in age, race, and ethnicity were enrolled in both vaccine trials and demonstrated that the vaccines work equally well across all subgroups included in the studies. Additional clinical trial results, including those for single-dose vaccines, have also been promising and could accelerate the timeline to ending the pandemic.

I am eligible to get vaccinated but cannot get an appointment. What should I do?

While there is limited supply of COVID-19 vaccines currently, the supply will increase over time. Current vaccination appointments are contingent on vaccine availability and administration capacity, and efforts are underway to increase both. While many older adults are anxious and eager to get the COVID-19 vaccines, we suggest considering the following:

  • Register at othena.com to be notified when an appointment slot becomes available. As the supply increases and additional Super POD sites open, more appointment slots will be made available. You only need to register once to be notified via app or email when it is time to schedule.
  • For UCI Health patients, regularly check UCI Health’s MyChart or vaccine.ucihealth.org to see if appointments at the UCI Bren Events Center become available. There is no waiting list to join at this time.
  • Discuss vaccination with your primary care provider or health plan to determine if there are other options that may be available to you.
  • Veterans can contact VA providers to see if vaccination appointments are available.

Whether a person has been vaccinated or not, we strongly encourage everyone to continue COVID-19 prevention practices, including mask wearing, physical distancing, and frequent hand washing.

Have UCI MIND doctors and staff received vaccinations?

As part of the County’s efforts to vaccinate healthcare workers, all clinical research staff who are involved with UCI MIND study research visits have completed their COVID vaccinations or will soon.

Researchers who are not directly interacting with study participants in-person or who are not at direct risk of exposure in their day-to-day workplace interactions will await guidance from the University as the County provides timeframes for additional tiers to be included in vaccination efforts.

Is it safe to attend in-person research visits at UCI MIND?

Participant safety is our highest priority.  We have limited in-person study visits for clinical trials at this time. With increased vaccinations and reduced hospitalizations and infections in the County, we hope to restart additional studies as soon as it is safe to do so. 

We have taken several steps, in addition to our standard rigorous infection control measures, to ensure our facilities remain safe for those coming for study visits:

  • Daily Health screening for COVID-19 symptoms, including survey of recent travel history or potential exposures, as well as temperature checks for all staff and individuals coming for in-person activities.
  • All staff, study participants, and study partners (as well as any visitors) are required to always remain masked. Those who do not have a face mask are provided one.
  • Exam and testing rooms are fully cleaned and disinfected before and after each use.
  • Schedules have been adjusted to limit the number of individuals who are seen at any time. Physical distancing is always maintained, and staff are diligent to ensure participants are settled into a private room to reduce unintended interactions. 
  • All common areas are regularly cleaned with special attention to high touch surfaces.

As clinical researchers and participants continue to complete vaccinations, the UCI MIND team will assess the timing and logistics to expand in-person study visits. We are committed to our research mission and resuming normal in-person study activities as quickly and as safely as possible. 

For more FAQs about the vaccines, visit ucihealth.org/covid-19/covid-vaccine-faq 

 


A letter from the McElroy family:

Remembering Matt, a pioneer in Down syndrome research

 

McElroy Family

Our brother, Matthew “Matt” McElroy, was introduced to the UCI Down Syndrome Program in 1997 when he was 35 years old. Our Mother heard about the program, led by Dr. Ira Lott, through her community of Down syndrome parents. 

Just a year earlier, our Dad had passed away suddenly, and it seemed to hit Matt harder than most. As time went on, we noticed symptoms of depression and distinct changes in his personality. So, we made an appointment with Dr. Lott, and from that point until he passed away at age 58 on February 1, 2020, UCI had a critical relationship with Matt and our family.

Matt was a very social person and loved the attention he received from the research staff. He was treated with great care and dignity, and we developed trust – especially with the Program Manager, Eric Doran. Eric never let us down and was critical to our understanding of what Matt was going through and what we could expect as his disease progressed. Initially, the Down Syndrome Program was a way for us to find answers about Matt’s behavior changes. But we also learned about the outsized impact of dementia in the Down syndrome population. 

While Matt could communicate with us in his unique way, he was largely non-verbal in a classic sense. As his dementia progressed, he withdrew more and more and his interest in communicating suffered. When Matt could no longer manage office visits, the doctors and staff came to our family home for regular physical and behavioral checkups. The team was always patient, kind and available by phone for questions and advice. They functioned as friends and guides on this sad journey until the very end. 

Without the Down Syndrome Program, there are points where we would have felt lost. The staff came to care about Matt as a person first, not just a research subject – a kindness that extended to our whole family.

When Matt passed away, our family made the collective decision to donate his brain. The years Matt had dedicated to the program and the research that might help other families facing the same journey made our decision easy. 

Matt was a gift to our world, and we know that this was a way he could keep on giving. He was a pioneer his whole life – as a personality, an athlete, a brother, a son and a community member. The Down Syndrome Program allowed Matt to continue to make a difference in the world. Matt always made a difference.

The UCI Down Syndrome Program was a rich and enormously helpful experience for the McElroy family, and we are both proud and very grateful to have been a part of it with our brother.

Pat McElroy          Eileen McElroy          Kevin McElroy

 John McElroy       Dan McElroy

 

Matt starred in a 1980-1981 Special Olympics Commercial with Jim Chones, forward on the World Champion Lakers. View the clip here: https://youtu.be/H2neG32O-dg

 


Virtual Gala warms hearts, opens minds, drives donations both on & offline

 

UCI MIND’s A December to Remember Gala on December 5, 2020, exceeded expectations in every way. The event took place virtually for the very first time amid the COVID-19 pandemic, reaching over 850 viewers. Motivated by personal stories, world-class entertainers, and enticing auction items, donors gave over $300,000 toward UCI MIND’s vision to rid the world of Alzheimer’s disease and related dementias. 

“Not only did viewers offer UCI MIND an overwhelming amount of support through their donations, they also offered rave reviews of the broadcast,” said Chair of the Gala Committee, Virginia Naeve. “It was an honor to work with such dedicated committee members who helped produce a powerful virtual event benefiting such an important cause.” 

The online broadcast, co-hosted by director Joshua Grill and auctioneer Zack Krone, featured performances from Justin Willman, creator of the hit Netflix series Magic for Humans, and Ashley Campbell, singer-songwriter and daughter of the late Glen Campbell. Both performers shared the impact of Alzheimer’s disease on their own lives, making their segments as poignant and powerful as they were entertaining. 

Though the Gala has passed, it can still be viewed on YouTube, and donations can be made online here.

 


 

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The mind behind UCI MIND’s new media hub

 

Gil Aranowitz

Meet Gil Aranowitz, Director of Creative Strategy at The Best Words Win in Irvine, a firm that helps clients meet their marketing goals through creative strategies, like storytelling. Gil joined UCI MIND’s Leadership Council in 2018 to support marketing efforts led by fellow Council Member, Steve O’Leary. At the time, Gil’s wife was struggling to provide remote support for her mother with Alzheimer’s disease in Tokyo. And so, Gil’s involvement with UCI MIND began as a symbolic way to show support for his family.

When the pandemic hit, UCI MIND was challenged to come up with new creative “virtual” ways to engage the local community. Tapping into Gil’s expertise in marketing strategy and creative development, the idea for “UCI MINDcast” was born. 

UCI MINDcast is UCI MIND’s new video and podcast library with up-to-date content on the latest in Alzheimer’s and dementia research, education, and care. Content categories include Ask the Doc, Truth or Myth, Accelerating Discovery, Be the Solution, Meet the Team, and Spotlight on Care, a new podcast for caregivers hosted by Leadership Council Members, Steve O’Leary and Virginia Naeve.

Virginia Naeve and Steve O’Leary recording the first episode of Spotlight on Care, a caregiver-focused podcast

How did you come up with the idea for UCI MINDcast?

Gil: Steve asked me to start thinking about how UCI MIND should use video starting in 2021. I like to start with the ideal solution, which was to try to find a way to organize all our video efforts into an efficient, strategic framework. Doing that helped us clearly see the opportunity to start podcasting as well. As we mapped out the framework and plan, I tapped into the right side of my brain and came up with the name UCI MINDcast to brand it. It just made sense!

How do you hope UCI MINDcast will help our community?

Gil: I hope UCI MINDcast, as an initiative and organizing principle, makes it easier for people to find the information they need, whether it be caregiving tips, research updates, or prospective community members wanting to learn more about UCI MIND. 

What motivates you to volunteer with UCI MIND?

Gil: The great work being done by UCI MIND and the passion everyone has for the mission. Enthusiasm is contagious. Also, Steve has been great at raising the bar for what we can do from a marketing standpoint. I love the challenge and knowing that the next year will be better than the last. It’s humbling to be able to use my creativity to support an organization like UCI MIND. Getting back to why I got involved in the first place, I’m grateful for the opportunity to help.

 

For the latest UCI MINDcast content, visit www.mind.uci.edu/mindcast 


Engaging Korean Americans in dementia research & education

 

(from left) Hye-Won Shin, PhD and Boon Ja Yoo

In recent years, UCI MIND has developed a community partnership with Somang Society, a Cypress-based non-profit organization with the mission of promoting “Well-Aging, Well-Being and Well-Dying” for Korean American (KA) older adults and their caregivers in Southern California. 

For the past fourteen years, Somang Society has provided numerous educational seminars in Korean and English on aging and end-of-life issues for KA older adults with limited English proficiency. Programs include Somang Dementia Forum, Somang End-of-Life Forum, Somang Care Class for KA older adults with early-stage dementia, Somang Family Caregiver Support Groups, and YouTube Dementia Education Series with UCI MIND researchers. Somang Society has also been at the forefront of education on the importance of organ donation for medical research. As a result, over 1,798 KA older adults have registered for the UCI Willed Body Program through Somang Society since 2008.

Somang Society recognizes that clinical research participation from the Asian American community including Korean Americans is extremely limited, yet critical to improve understanding of health and diseases, such as Alzheimer’s, in diverse populations. So, in partnership with UCI MIND, Somang Society aims to dispel the negative stigma about medical research via culturally competent education and to facilitate KA older adults’ participation in federally funded clinical research such as the UCI Consent-to-Contact Registry (c2c.uci.edu) and the Collaborative Approach for Asian Americans & Pacific Islanders Research and Education (CARE) (careregistry.ucsf.edu), both of which are available in Korean, Mandarin, and Vietnamese. 

To support these efforts, Mrs. Boon Ja Yoo, President of Somang Society joined the UCI MIND Leadership Council as the very first KA member. And Hye-Won (Grace) Shin, PhD, serves as Director of Asian 

American Community Outreach for UCI MIND. Dr. Shin’s role is to establish partnerships with various Asian American community organizations, to provide scientific evidence-based community education programs and to conduct research studies in both English and Korean. In parallel, Dr. Shin serves as a Community Advisory Board member for CARE by representing Somang Society. 

UCI MIND and Somang Society are hopeful that through this community partnership, we can facilitate diversity and inclusion in medical research and improve understanding of Alzheimer’s disease and related dementias among Asian Americans.

To learn more about Asian American research and outreach at UCI MIND, email hyewons@uci.edu 

 


 

Upcoming Events

Ask the Doc Video Series
Guest Experts from UCI MIND
New Episodes Monthly 
UCI MINDcast | mind.uci.edu/mindcast

Spotlight on Care Podcast Series
Steve O’Leary, Virginia Naeve, & Guests
New Episodes Monthly
UCI MINDcast | mind.uci.edu/mindcast

32nd Annual SoCal Alzheimer’s Disease 
Research Conference
Friday, September 10, 2021
Save the Date!

 

Past educational sessions are archived on UCI MINDcast and YouTube

OC COVID-19 Resources

Facility for COVID-19+ Dementia Patients
Alzheimer’s OC | covid@alzoc.org

ASSIST Program for Isolated Seniors
UC Irvine | 714.497.0315

Virtual Caregiver Support Groups
Alzheimer’s Association | 800.272.3900
Alzheimer’s OC | 844.435.7259

Food, Housing, Financial Support
211OC | Call 211 or Text Zip Code to 898-211

In Home Supportive Services (IHSS) Hotline
OC Social Services Agency | 714.825.3000 (Dial 4)

Mental Health Support
NAMI Warm Line | 877.910.9276
New Hope Crisis Hotline | 714.639.4673

 


 

Download Newsletter >

 

Donate to UCI MIND >

 


 

CONTACT US

General Information
mind.uci.edu
ucimind@uci.edu

Giving Opportunities
949.824.3793
ddharper@uci.edu

Education & Outreach
949.824.9896
cgcox@uci.edu

Research Participation
949.824.0008
research@mind.uci.edu

Staying “Cognitively Fit”

By Participants

Contributed by Michelle McDonnell, PhD

A common recommendation to participants at UCI MIND is to remain “physically, socially, and cognitively active.” While one can easily understand how to implement the recommendations for increased social and physical activity, it is more challenging to understand what types of cognitive activities there are and how to increase them in a meaningful way. This blog defines what we mean when we recommend increasing cognitive activity and provides some examples you can easily implement in your day-to-day life.

Cognitive activity (sometimes referred to as cognitive stimulation) is defined as complex mental activity that can potentially promote neuroplasticity. Neuroplasticity is the ability of the brain networks to grow and/or reorganize. While this happens most in infancy and childhood, brain plasticity remains throughout life. Some research studies have even found that engaging in cognitively stimulating tasks throughout the lifespan may reduce risk for cognitive decline in later life.

There is a common misconception that cognitively stimulating tasks must be uninteresting, regimented, and sterile to achieve their ultimate goal. In fact, many entertaining and enjoyable activities can be effective forms of cognitive activity. Activities that incorporate a positive emotional experience, such as connecting with friends and family, joy, and incentives (e.g., winning the game, solving the puzzle) can even increase the level of engagement. The key is to continue challenging multiple cognitive domains (e.g., memory, attention, visual scanning, multitasking), and if possible, to incorporate physical activity (e.g., golf) and social engagement (e.g., games).

There are a number of examples of cognitively stimulating tasks you can incorporate into your day-to-day life, as listed below:

  • Card Games

Solitaire, Bridge, Gin Rummy, and even Poker or Black Jack (however, we would strongly suggest playing for fun and not using your personal finances).

  • Jigsaw Puzzles
  • Crossword Puzzles
  • Mahjong
  • Video Games

While your children and/or grandchildren may frequently play video games, there is some data to suggest there is a cognitive benefit for older adults who participate in video game play. This can also be an activity you can do with your family members and engage in some healthy competition.

If you are looking to engage in more challenging cognitive activity, you can work on learning a new skill or gaining knowledge in a new academic area. Below are additional options for increasing cognitive activity:

  • Learn a new language
  • Take up a new musical instrument
  • Take classes at a local college

Some local universities and community colleges offer courses to individuals over the age of 60 for free or at a reduced cost. While you may not be able to obtain a degree through these programs, this is a good way to increase your cognitive activity by taking courses and studying new topics of interest.

To gain additional benefits from the activities, think of something that is new and foreign to your everyday activities. Many older adults, including healthy individuals who are not experiencing cognitive decline, frequently report concerns about memory loss. This can in part be explained by an overly regimented day-to-day schedule. While structure is beneficial for activities such as exercise, medications, and sleep, particularly for individuals with cognitive impairment, it can cause days to “blur together” and make them indistinguishable from one another. This has been the case for many of us during the COVID-19 pandemic. However, when you begin to participate in unique and novel activities more regularly, this can actually help improve cognition. New activities can help differentiate each day in your memory, thus improving your ability to recall the day’s events.

Even in the midst of the current pandemic, many of the above-mentioned activities can be done in isolation and through online resources. And you don’t need to spend a fortune to find opportunities to engage in cognitive activities—using your social network and finding free of charge options are likely to be just as beneficial as expensive brain training programs. Our hope is that you maintain your health during these trying times and find a way to engage in some of these additional activities while maintaining your safety.

Holidays during COVID-19

By Commentary, COVID-19, Participants

Contributed by UCI MIND Nurse Practitioner, Catherine McAdams-Ortiz, MSN, RN, A/GNP

Have you noticed the Holiday decorations popping up at shopping malls already? Yes, the Holiday Season is upon us.

This year, due to the COVID-19 pandemic, we all need to carefully plan our social gatherings, meals, and guests in our homes. Hopefully, you will find some helpful hints here so you can safely navigate all the Holidays you will celebrate this year.   The very best gift you can give yourself, your loved ones and your friends is to make sure you get your flu vaccine as soon as possible.

Keep in mind that grocery stores and malls will be getting more crowded as we move closer to the Holidays. Consider ordering your groceries online and having them delivered to your home or ordering online and picking up your completed order at the store. It will be safer to use environmentally friendly and disposable plates, cups, and flatware at your home if you are planning on having guests.

Be sure to provide a mask and hand sanitizer for each of your guests as they enter your home, and hand sanitizer at each table and in each bathroom. It is a good idea to switch out reusable cloth hand towels for disposable guest towels.

The Centers for Disease Control (CDC) has a very detailed website with a list of which activities for Holiday gatherings pose the highest risk during this pandemic. You can find them on the internet at cdc.gov. Large gatherings of family and friends are being discouraged this year, unless you can plan on having a virtual get together. One of the activities the CDC mentions that would pose a low risk of spreading the COVID-19 virus is a small dinner party with only members of your immediate household.

In October, the California Department of Public Health issued guidelines to all Californians. The guidelines contain mandatory requirements for private gatherings. Please visit their website at cdph.ca.gov. The CDPH recommends the smaller the number of guests the better, but anything more than three households in attendance is “prohibited”. The longer the duration of the gathering, the higher the risk of transmitting the virus.  No gathering should be longer than two hours. The host of the gathering should plan on collecting the names and contact information of each person in attendance, on the off chance that contact tracing should become necessary.

It is safer to hold gatherings outdoors. Weather permitting, plan on setting up tables and chairs a minimum of six feet apart. Careful planning for the seating of children, elderly, or people at high risk of contracting COVID-19 is very important. Name tags placed at each guest’s assigned seat is a smart idea. Buffet-style sharing of the same serving utensils is discouraged. Assigning one person the task of refilling drinks or plates as needed will decrease the chance of too many people moving about in a small space.

At Holiday gatherings, favorite pastimes for many include watching a ballgame together on television, singing, chanting, or playing musical instruments. This year, we must be careful if planning on engaging in these activities. These activities are considered high risk and highly discouraged, as the virus is spread through droplets and aerosols. If you will be engaging in any of these activities, be vigilant and wear a mask while maintaining a minimum of six feet between you and the person nearest you.

There are many other considerations for this Holiday Season, such as the safest way to travel, if you must. The CDC website has excellent recommendations where travel is concerned.

No matter how you celebrate each of the Holidays this year,  please know that your team at UCI MIND wishes you a Happy, Healthy, and Safe Season.

 


 

Catherine McAdams-Ortiz, MSN, RN, A/GNP is a Nurse Practitioner for the UC Irvine Institute for Memory Impairments and Neurological Disorders.

MIND Matters | Quarterly Newsletter | Fall 2020

By Commentary, Community Events, COVID-19, In the News, Participants

Message from the Director

 

Dear Friends of UCI MIND,

As the COVID-19 pandemic continues to impact our lives this fall, the fight to solve Alzheimer’s disease and related dementias (ADRD) must charge forward. This November, the U.S. FDA will convene an advisory committee to assess potential approval of Biogen’s aducanumab, a monoclonal antibody in development for treatment of early AD. We will watch closely as aducanumab could be the first new approved drug for AD since 2005. Regardless of the outcome of the meeting and subsequent FDA decision – anticipated in March 2021 – this represents a milestone for the field.

Here at UCI MIND, our mission marches on as well. Our investigators continue to be highly successful in securing NIH funding for cutting-edge projects. UCI MIND continues to play leadership roles in training the next generation of AD researchers.

This includes a new national clinical trials program, and the addition of two new neuropsychologist trainees with the generous support of the Brethren Community Foundation. Essential to this focus is ensuring a diverse workforce of investigators, who can better recruit diverse participants to our studies. Support from philanthropists, like the Brethren Community Foundation, remains vital to our mission. We acknowledge the remarkable generosity of many of our supporters. Along with our investigators and research participants, you will be the reason we find solutions for ADRD. We thank you, happy holidays, and please stay safe.

 

Joshua D. Grill, PhD
Director, UCI MIND

 

 

 


The Power of Leadership

 

Brethren Community Foundation Board of Directors with Harriet Harris, center

More than 50 years ago, a group of leaders in Long Beach had a vision to give seniors their “rightful dignity” by providing them an affordable home, transportation, and a nurturing social environment so they may live stress free in the twilight of their years. The group, led by Willard V. Harris, Sr., transformed this vision into reality with the construction of the Long Beach Brethren Manor in 1964. Since then, this service has evolved into a new generation of Harris family leadership in philanthropic giving through the Brethren Community Foundation.

The Foundation supports youth education and senior health through philanthropic grants to non-profit organizations and individuals of all backgrounds in need of financial assistance. 

As a non-profit organization seeking to improve senior health through research and education, Foundation board member and daughter-in-law of Harris, Sr., Harriet Harris identified UCI MIND as a natural partner.

“Senior health is a critical component to our mission. UCI MIND is at the forefront of Alzheimer’s research, which is severely affecting our seniors and all of mankind. We wanted to step up to support the critical research needed to help not only today’s senior population, but also future generations,” said Harriet. Since Harriet facilitated the partnership in 2018, the Brethren Community Foundation has contributed $350,000 to research and training at UCI MIND. With its dual focus on education, the Foundation took a special interest in supporting fellowships for new clinician investigators focused on senior health. 

So far, the partnership has resulted in the recruitment of two neuropsychologist fellows, Jean Ho, PhD and Jung Jang, PhD. 

Dr. Ho’s research focuses on the link between blood pressure medication use in older adults and potential cognitive benefits. As part of her fellowship at UCI MIND, Dr. Ho will receive training in the design and analysis of clinical trials to test this association, which may have implications to future dementia prevention.  

Dr. Jang’s research focuses on the understudied emotional and behavioral symptoms associated with dementia, and she has already published several important findings on this topic. As a UCI MIND fellow, she aims to improve understanding of how vascular damage to the brain may contribute to these symptoms, hopefully providing insights to potential new assessments and treatments for dementia. 

The research training opportunities provided to these bright young clinicians were made possible by the vision and leadership of Harriet and the Brethren Community Foundation.

Drs. Jean Ho (left) and Jung Jang (right) were awarded UCI MIND Fellowships supported by the Brethren Community Foundation.

The Foundation considers its grant recipients partners in the mission to improve the well-being of its community, and UCI MIND is a proud partner and witness to the power of leadership demonstrated by the Foundation. Together, community leaders and UCI MIND can and will solve Alzheimer’s disease and related dementias and improve circumstances for future generations. 

In demonstration of the Foundation’s continued commitment to this mission, they have offered to match, dollar-for-dollar, the first $100,000 raised before December 31, 2020 for new UCI MIND Fellowship opportunities. Click here to make a donation and see your contribution go twice as far.

 


UCI MIND faculty launch national training program to promote diverse leadership in clinical trials

 

UCI MIND, along with experts from across the country, launched a unique and comprehensive course this fall to educate and diversify the next generation of leaders in clinical trials for Alzheimer’s disease and related dementias.

The program, called IMPACT-AD, is co-directed by UCI MIND director Joshua Grill and Rema Raman, director of biostatistics at the USC Alzheimer’s Therapeutic Research Institute. UCI MIND faculty Drs. David Sultzer and Dan Gillen are also part of this innovative program. It is funded for five years by a joint $4 million in grants from the National Institute on Aging and the Alzheimer’s Association.

Nearly 6 million Americans are living with Alzheimer’s disease. Almost two-thirds of them are women. Older Black Americans are about twice as likely to develop Alzheimer’s or other dementias as older whites, and Hispanics are about 1.5 times as likely to develop Alzheimer’s or other dementias as older whites.
The purpose of the course, Dr. Raman said, “is to make the clinical trials’ workforce as diverse and representative as the participants we hope to recruit for our studies.” Out of more than 100 applicants, 35 were selected for the inaugural course, held virtually this past September. The group includes medical doctors, nurses, public health professionals, study coordinators and other scientists as well as postdoctoral researchers and research fellows from universities and health care systems across the country. Seventy percent were women and 40% self-identified as persons of color; one-fifth of the cohort were the first in their families to earn advanced degrees.

Said Dr. Grill, “With this new program, we really want to invigorate the field by engaging trainees at many levels, from many backgrounds, with different personal experiences and demographics as well, because we wholeheartedly believe in team science and the diversity of ideas will move the field forward.”

 

The inaugural IMPACT-AD class attended the week-long course via Zoom.

 


Music, Magic, and Memories

 


 

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Efforts to increase diversity in research participation

 

The UCI C2C Registry (left) and the new statewide registry, CARE (right), are now live in multiple languages.

The scientific evidence informing our understanding of Alzheimer’s disease and related dementias (ADRD) comes from studies comprised overwhelmingly of non-Hispanic white participants. Far fewer data are available from other racial and ethnic groups, such as Hispanics, African Americans, and Asian Americans and Pacific Islanders (AAPI).  And even less is known about brain aging and dementia among diverse groups in their 90s and beyond.

Better representation of diverse racial and ethnic groups across the lifespan in research could offer insight into the burden of ADRD in different populations and lead to more effective diagnosis, treatment, and prevention for all people. In particular, it will be essential to know if new treatments are equally safe and effective in the diverse communities who need them. At UCI MIND, we are dedicated to increasing diversity in research studies to better represent all people affected by ADRD, and Orange County’s diverse community creates an opportunity to do so.

In 2016, UCI MIND launched a local recruitment registry – the UCI Consent-to-Contact (C2C) Registry – to raise awareness of research participation opportunities at UCI (c2c.uci.edu). We are excited to announce that this fall, the UCI C2C went live in Spanish, Korean, Chinese, and Vietnamese to allow more people to access this online tool. Additionally, in partnership with UCSF, UC Davis and AAPI advocacy organizations, UCI MIND is now participating in a new statewide registry – the Collaborative Approach for AAPI Research and Education (CARE) – to support representation of AAPI in aging research (careregistry.ucsf.edu). Also in partnership with UC Davis, as well as the Kaiser Division of Research in Northern California, UCI investigators are helping establish a one-of-a-kind multi-ethnic cohort of individuals age 90 and older, called Life After 90, which will redefine our knowledge of dementia and brain pathology in the oldest-old.

UCI MIND continues to partner with an Asian American Community Advisory Board to increase participation in our longitudinal cohort study, and we have recently initiated a Hispanic Advisory Board and are seeking new members. Together with our diverse community, we will improve our understanding of ADRD in diverse populations and find solutions for people of all backgrounds.

 


Faculty earn competitive NIH awards for biomarker projects

 

Alzheimer’s Biomarker Consortium – Down Syndrome (ABC-DS) Award

Drs. Elizabeth Head and Mark Mapstone were awarded a five-year $100 million grant to study biomarkers for Alzheimer’s disease in people with Down syndrome. The ABC-DS evolved from the longstanding contributions of Dr. Ira Lott and Eric Doran, who had the insight to include older people with Down syndrome in Alzheimer’s disease research.  People with Down syndrome are at very high risk for Alzheimer disease as their extra copy of chromosome 21 leads to accelerated amyloid buildup with aging. The new grant will help researchers improve understanding of the unique disease progression in this population. 

 

 

Standardized Centralized Alzheimer’s Neuroimaging (SCAN) Award

Early diagnosis and tracking of Alzheimer’s disease progression are central to our national effort to identify effective treatments. Led by Drs. David Sultzer and Craig Stark, this new project will contribute novel brain imaging data to improve biomarkers of Alzheimer’s disease and reveal their links to disease progression and clinical symptoms, such as early behavioral changes.  The project will also evaluate several cutting-edge, less invasive approaches to collecting biomarker information, which will be critical to accelerating Alzheimer’s disease clinical trials.

 


 

Upcoming Events

11th Annual A December to Remember Gala
Saturday, December 5, 2020 | 5:30 – 7:00 pm PDT
FREE Virtual Event | Register: gala.mind.uci.edu

2020 Facebook LIVE Q&A Series
Guest experts from UCI MIND
Monthly | 11:00 – 11:30 am PDT 
Facebook: facebook.com/UCIrvineMIND/live

Past educational sessions are archived on Facebook and YouTube

OC COVID-19 Resources

ASSIST Program for Isolated Seniors
UC Irvine | 714.497.0315

Virtual Caregiver Support Groups
Alzheimer’s Association | 800.272.3900
Alzheimer’s OC | 844.435.7259

Food, Housing, Financial Support
211OC | Call 211 or Text Zip Code to 898-211

In Home Supportive Services (IHSS) Hotline
OC Social Services Agency | 714.825.3000 (Dial 4)

Mental Health Support
NAMI Warm Line | 877.910.9276
New Hope Crisis Hotline | 714.639.4673

 


 

Download Newsletter >

 

Donate to UCI MIND >

 


 

CONTACT US

General Information
mind.uci.edu
ucimind@uci.edu

Giving Opportunities
949.824.3793
ddharper@uci.edu

Education & Outreach
949.824.9896
cgcox@uci.edu

Research Participation
949.824.0008
research@mind.uci.edu

Tips for Participating in Remote Testing Sessions for UCI Research at the UCI ADRC

By Participants

With the COVID-19 pandemic and social distancing measures that have been in place since March 2020, unprecedented challenges have presented for everyone working in Alzheimer’s disease clinical research and clinical trials/drug development.

 

As many older adults are isolating themselves at home, individuals and their families are pivoting to use technology to stay connected with loved ones and one another. With common devices like smartphones, tablets, and computers with cameras, platforms for video-conferencing (i.e., Zoom, FaceTime, Skype, Facebook) become important tools for us to stay connected. Many healthcare providers have also transitioned to remote health visits, to continue to assess health issues and maintain important medical visits with patients while keeping safety in mind.

 

With many research sites not able to see participants for in-person routine study visits, research groups have found themselves looking to technology to conduct study visits. At UC Irvine’s Alzheimer’s Disease Research Center (ADRC), our team has been working hard these past few months to get the UCI ADRC’s Longitudinal Cohort operational by adapting and moving to virtual visits, so that we can restart and continue to conduct annual cognitive assessments on the many committed research participants in the program.

 

We proudly launched our virtual cognitive assessments at the end of September 2020 and want to thank all the clinical research participants who have agreed to this new mode of conducting your annual research assessments. While we are assessing ways to continually improve this new process and are learning about how to best adapt to the technology available, we wanted to share some helpful tips to help make the virtual testing sessions go more smoothly.

 

One of the most significant hurdles in remote cognitive assessment is related to one’s ability to access and use the technology involved.  We understand that there may be some challenges with following and remembering directions related to technology, and there may be circumstances where assistance is needed. Our research coordinators are available to help provide clear instructions and ask for your patience and flexibility as each participant navigates the tools to allow for the remote cognitive testing sessions. If you would like to request a practice session to ensure everything is set up using your available technology in advance of the testing session, that can be arranged with the research coordinators.

 

Tips for a Successful Remote Cognitive Testing Session:

  • The Remote Cognitive Testing Session for the UCI ADRC Longitudinal Cohort will take approximately 2 hours. Every effort should be made to ensure no other people will be in the room at the time of testing. It is acceptable to have another individual present to assist with any technical difficulties one may encounter, but no interaction with that individual should occur during the testing session.
  • We would like to encourage an interruption free testing environment. The environment selected should be quiet and disturbance free.
  • There should not be any clocks and/or calendars accessible near the testing area.
  • Participants should ensure that they have eaten in advance of the testing sessions. This is important so that you have enough energy and sustenance to complete the testing session.
  • Participants should use the restroom before starting the testing sessions. While breaks can be had, it is preferred to have as little disruption to the testing session as possible.
  • Participants should ensure that pets are walked/relieved before starting the testing session.
  • We ask that there be reliable internet connectivity for all video visits.
  • For telephone only (audio only) sessions, please ensure you are either using a land line or a reliable cordless/mobile phone that has enough battery power to complete a 2-hour session.
  • Please ensure that any devices used (computers, laptops, tablets, or cell phones) be fully charged or plugged in to prevent disruption.
  • Ideally a mobile device such as a tablet or laptop would be easiest to use, as they have built-in microphones and cameras. Should you plan on using a desktop computer, please ensure that there is a working camera and microphone connected. Smartphones are also acceptable and easy to use, but the screen size may make it harder to see.
  • Should the above conditions not be possible, please try to schedule at a time when conditions are optimal for the participant and the tester.

 

While we hope for the remote testing sessions to go as smoothly as possible, we ask for everyone’s continued patience and flexibility at each session as our study team is committed in ensuring the best testing environment possible for each participant.  We want to express our sincerest gratitude for each participant’s commitment to the research program and ask for your patience in working with our team in these challenging times.

 

Should any research participants have further questions or need technical assistance setting up your annual research assessment, please do not hesitate to contact us by calling 949-824-2382 or by emailing ADRC@mind.uci.edu.

 

Dilbert by Scott Adams

 

 

 

MIND Matters | Quarterly Newsletter | Summer 2020

By Commentary, Community Events, COVID-19, In the News, Participants

Message from the Director

 

Dear Friends of UCI MIND,

Summer of 2020 has been unlike any summer before. We are all struggling to adjust to life amid a global pandemic that has been upending our lives for several months. Many of us have been unable to see our loved ones, others have lost our treasured family members. At the end of this newsletter, we offer some guidance from the Centers for Disease Control for caregivers of people living with dementia.

Despite COVID-19, the work of UCI MIND continues. This includes important milestones. Most notably, the NIH selected UCI MIND to remain a member of the federal Alzheimer’s Disease Research Center network. We also started a new mentorship program to inspire medical students to join the fight against Alzheimer’s and other dementias. And many research studies are set to begin soon, including a major new prevention trial, the AHEAD Study. 

Life after UCI MIND will begin for Dr. Malcolm Dick, who will begin retirement this fall. Dr. Dick’s contribution to UCI MIND cannot be overstated. He has been a trusted source of clinical and research expertise for thousands in Orange County. 

It is unclear when life will return to normal, or what the new normal will entail. For the time being, our events such as our annual research conference and gala will go virtual. But we are eager to see all members of the UCI MIND community in person again through research visits, community outreach, and other events as soon as is safely possible.

 

Joshua D. Grill, PhD
Director, UCI MIND

 

 

 


UCI MIND remains home to OC’s only NIH-funded Alzheimer’s Disease Research Center

 

Led by Dr. Frank LaFerla, dean of the UCI School of Biological Sciences and director of the UCI Alzheimer’s Disease Research Center, a multidisciplinary team of UCI MIND investigators has successfully been awarded a five-year, $14.4 million grant from the National Institutes of Health (NIH) to sustain critical research and education as Orange County’s only Alzheimer’s Disease Research Center (ADRC). The NIH funds only 32 of these centers at major medical institutions across the United States.

“Our research team brings passionate and novel cross-disciplinary approaches to try to solve this insidious disease. We collaborate with colleagues across the nation, and we provide critical resources to the community,” says Dean LaFerla. 

This marks the eighth time that UCI MIND has earned the competitive five-year award from the NIH. UCI was one of the original six centers funded by the NIH, initially in a combined center with USC. Founding director Dr. Carl Cotman led the effort at UCI, including its transition to an independent center in 2000. Dr. LaFerla took the reins in 2009 and has overseen major growth of the ADRC in the past 10 years. 

This growth includes the recent award. The new NIH grant funds 10 collaborative “cores”, each with a unique focus and led by a different UCI MIND faculty member (below). Three new cores were added in the current cycle, a biomarker core and two special populations cores, reinforcing UCI’s longstanding leadership in research with people with Down syndrome and people age 90 years and older. The new grant will also signal the start of a new research education component, which aims to train the next generation of researchers and clinicians through novel programs.

 


Honoring the retirement of Dr. Malcolm Dick

 

Dr. Malcolm Dick with a research participant

After 36 years of research, mentorship, and service, UCI MIND bids a grateful farewell to senior neuropsychologist, Malcolm Dick, PhD, who will begin retirement this fall. During his tenure with UCI MIND, Dr. Dick conducted neuropsychological and cognitive assessments with over 10,000 participants as part of the Alzheimer’s Disease Research Center longitudinal study and the California Alzheimer’s Disease Center program. 

Patients and families have long revered Dr. Dick for his professional, compassionate nature when delivering challenging diagnoses. Hiscolleagues and over 80 psychology trainees have equally admired his mentorship in providing unparalleled attention and care to eachparticipant with whom he interacted.

Maria Corona, PhD

Michelle McDonnell, PhD

Originally slated for an early summer retirement, Dr. Dick has selflessly volunteered to see UCI MIND through the current challenges associated with the COVID-19 pandemic, and to aid the transition to two new neuropsychologists, Maria Corona, PhD and Michelle McDonnell, PhD, who will begin with UCI MIND in the early fall.  Dr. Dick’s dedication to participants, families, and trainees has contributed significantly to the continued success of UCI MIND over the past three decades. In honor of his retirement, friends of UCI MIND are creating the Malcolm B. Dick Endowment to support education and training for early-career clinical researchers. To donate to this fund, click here or visit https://zotfunder.give.uci.edu/project/21770.

 


RAMP-ing up Alzheimer’s training for medical students

 

HFC founders, Lauren Miller Rogen and Seth Rogen virtually congratulated UCI MIND RAMP inaugural trainees

In partnership with UCI School of Medicine, UCI MIND launched a new Research And Mentorship Program (RAMP) for medical students this summer. The program, made possible by support from community philanthropist Dr. Lorna Carlin and the nonprofit HFC led by Seth Rogen and Lauren Miller Rogen, pairs medical students with UCI MIND faculty mentors to inspire scientific ideas and future careers in dementia research and care. As the field presently grapples with a serious shortage of geriatric healthcare professionals, this program aims to create a pipeline of enthusiastic trainees who, motivated by their experiences and mentorship, choose medical careers to advance knowledge and care for older adults. Three talented students have been selected for the inaugural summer program and projects are already underway:


A December to Remember is going virtual!

 

UCI MIND’s 11th Annual Gala, A December to Remember, will transition to an exciting virtual experience this year on Saturday, December 5th. Mark your calendar for livestreamed entertainment, online auction items, and a memorable night at home with your family and friends, all in support of local Alzheimer’s disease research. 

For more information and sponsorship opportunities, please contact Linda Scheck at 949.824.3251 or LScheck@uci.edu.

 


UCI MIND launches new preclinical Alzheimer’s disease trial: AHEAD 3-45

 

Worldwide, nearly 50 million people have dementia and the cases are expected to triple in the coming decades unless researchers discover effective preventions or disease-delaying therapies. With this backdrop, UCI MIND, as a member of the NIH-funded Alzheimer’s Clinical Trials Consortium (ACTC), is launching a new trial in preclinical Alzheimer’s disease—a proposed stage of disease that comes before memory problems begin. 

The AHEAD 3-45 Study is a global multicenter clinical trial aimed at preventing memory loss due to Alzheimer’s disease. 

The study, designed and conducted by ACTC, is funded through a public-private partnership with the National Institute on Aging, Eisai, and several philanthropic organizations. 

As one of approximately 100 sites worldwide selected to conduct the study, UCI MIND will enroll cognitively healthy adults ages 55-80 who have evidence of brain beta amyloid to test whether an investigational drug called BAN2401 can prevent the onset of memory problems due to Alzheimer’s disease. BAN2401 is an antibody that has been shown in people with Alzheimer’s disease to bind to amyloid and remove it from the brain, which scientists hypothesize may be able to delay or prevent symptoms of Alzheimer’s disease in those who are at increased risk based on the presence of amyloid in the brain.

This four-year clinical trial is unique in its design in that it will enroll two types of participants: those with elevated levels of amyloid and those with slightly lower intermediate levels of amyloid as evidenced by a positron emission tomography (PET) scan. The elevated group will enroll in the A45 study to be randomized to receive BAN2401 or placebo via intravenous infusions every two weeks for two years and then every four weeks for the remaining two years.  The intermediate group will enroll in the A3 study to be randomized similarly to receive BAN2401 or placebo, but infusions will occur every four weeks throughout the study duration.    

Volunteer participation in these trials is critical. A major emphasis in the AHEAD Study is to enroll a diverse population that is representative of the nation and of Alzheimer’s disease—which affects every racial and ethnic group.

To learn more about qualifying for a clinical trial or other studies at UCI, visit c2c.uci.edu or call (949) 824-0008.


Caregiver stress during COVID-19

 

Caring for a loved one with dementia can feel stressful and isolating. Add a pandemic on top of it, and these feelings can quickly multiply with the responsibilities of protecting your loved one and yourself from getting sick. The good news is that you are not alone and there are resources to help you navigate these additional stressors so you and your family can stay as safe as possible during a time that can feel impossible. According to the Centers for Disease Control and Prevention (CDC), there are important steps caregivers can take during and after a public health emergency to help manage and cope with stress. Here are some tips from the CDC on how to take care of yourself:

Eat a healthy diet, avoid using drugs and alcohol, and get plenty of sleep and exercise. Simple activities, such as walking, stretching, and deep breathing can help relieve stress. Choose plant-based foods, whole grains, healthy fats, fish and reduce intake of red meat, sugar, and processed foods.

Establish and maintain a routine. Try to develop a sleep schedule, eat meals, and exercise at consistent times each day, if possible. 

Make time to unwind. Incorporate a fun or positive activity into your routine to have something to look forward to each day or week.   

Take breaks from news stories. Hearing about the pandemic repeatedly can be upsetting. If you want to stay up-to-date, visit the CDC website for the latest research and recommendations: www.cdc.gov

Connect with others. Call family and friends. Talking to someone you trust about your concerns and feelings can help.

Have a backup caregiver. If possible, have someone who can step in if you become sick to ensure that your loved one continues to receive care. Then, you can focus on caring for yourself. 

Find a support group. Support groups can provide a safe space for you to find comfort in knowing you are not alone. Phone numbers for local virtual caregiver support groups are listed on the back page.

Call your healthcare provider. If stress gets in the way of your daily activities for several days in a row, seek help from a trusted healthcare provider or call a mental health support hotline like those listed on the back page.

 


 

UPCOMING EVENTS

31st Annual SoCal Alzheimer’s Research Conference

Tackling Dementia with Technology

Thursday, September 10, 2020 | 8:00 am – 12:00 pm PST

FREE Virtual Event | Register: conference.mind.uci.edu

 

11th Annual A December to Remember Gala

Saturday, December 5, 2020

FREE Virtual Event | Save the Date!

 

2020 Facebook LIVE Q&A Series

Guest experts from UCI MIND

Monthly | 11:00 – 11:30 am PST

Facebook: facebook.com/ucirvinemind

 

 

OC COVID-19 RESOURCES

ASSIST Program for Isolated Seniors

UC Irvine | 714.497.0315

 

Virtual Caregiver Support Groups

Alzheimer’s Association | 800.272.3900

Alzheimer’s OC | 844.435.7259

 

Food, Housing, Financial Support

211OC | Call 211 or Text Zip Code to 898-211

 

In Home Supportive Services (IHSS) Hotline

OC Social Services Agency | 714.825.3000 (Dial 4)

 

Mental Health Support

NAMI Warm Line | 877.910.9276

New Hope Crisis Hotline | 714.639.4673

 

 


 

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Donate to UCI MIND >

 


 

CONTACT US

General Information

mind.uci.edu

ucimind@uci.edu

Giving Opportunities

949.824.3793

ddharper@uci.edu

Education & Outreach

949.824.9896

cgcox@uci.edu

Research Participation

949.824.0008

research@mind.uci.edu

MIND Matters | Quarterly Newsletter | Spring 2020

By Commentary, Community Events, COVID-19, In the News, Participants

Message from the Director

 

Dear Friends of UCI MIND,

Since writing my last message for our Winter 2020 issue, we have all had our worlds turned upside down by COVID-19. At UCI MIND, we have faced challenges and have had to temporarily adapt our research programs. But, I know these challenges pale in comparison to those faced by members of our community. I’m especially concerned about the additional challenges faced by caregivers of people living with dementia, as well as the social isolation physical distancing can bring to older people who are living alone.

We are eager to help any way we are able. We are regularly posting messages from our team and COVID-19 resources on our Blog and social media accounts. Our YouTube channel offers hours of educational content, and we continue our monthly Q&A sessions on Facebook Live with UCI MIND researchers.

We will be offering more opportunities for online research participation through our UCI C2C Registry – anyone 18 and older can sign up and it only takes 20 minutes to enroll online (c2c.uci.edu).

We are eager to hear your ideas of how we might better serve you, our community of volunteers, advocates, patients and caregivers. Please email us at research@mind.uci.edu.

Most importantly, stay safe. Follow the CDC and state and local guidelines. Do your part to help address the COVID-19 crisis. We will get through this together, even if we cannot be together.

 

Joshua D. Grill, PhD
Director, UCI MIND

 

 

 


Adapting to change in the wake of COVID-19

 

The COVID-19 pandemic has made life challenging for many, none more than families facing Alzheimer’s disease and related dementias.

UCI MIND Alzheimer’s Disease Research Center leaders collaborate via Zoom

News media reports provide a daily reminder of the disproportionate impact of COVID-19 on American nursing homes, where many people with dementia reside and receive care. In the home, people with dementia may have difficulty adhering to safer-at-home guidelines and other public health recommendations to protect themselves and others from infection. And of course, quarantine has placed additional burdens on caregivers, who are having to adapt to a new way of living and managing care that can feel isolating and overwhelming.

UCI MIND, too, has had to undertake significant adjustments, but our mission to end Alzheimer’s disease and to serve as a resource of expertise and support to our community continues. During the pandemic, we have had to temporarily change our approach to research. Most of our laboratory scientists are working from home, analyzing existing data and writing papers while experiments are temporarily on hold. Some research personnel have special permission to visit the laboratory (practicing social distancing and minimizing time spent on campus) to tend to animal colonies, feed cell cultures, and perform other essential practices to minimize damage to research initiatives.

In human research, we have transitioned some observational studies to telephonic data collection. Others, like our Alzheimer’s Disease Research Center (ADRC) “Longitudinal Study,” which involves annual study visits with 400 participants at UCI MIND, are on hold. Having participants come to UCI for visits would force them to violate safer-at-home practices and put them at risk. This is true for our Down syndrome and 90+ Studies as well. ADRC leaders have engaged in robust conversations around best practices to continue these studies while maintaining data integrity and keeping participants and research staff safe. In all cases, we are staying in close communication with our participants and look forward to meeting with them again soon to continue these critical studies. 

UCI MIND clinical research faculty and staff at Hewitt Hall (above) and screen shots from home (below)

For clinical trials, studies that involve an intervention such as an investigational drug, the risk-benefit ratio is more complex. An additional consideration is to ensure participants are safe while taking investigational medications.  In-person visits continue in many trials. In close partnership with the UCI School of Medicine and the UCI Institute for Clinical and Translational Science, we have taken immediate steps to minimize the risk of virus transmission for trial staff and participants by consolidating activities and carefully scheduling to minimize participants’ interactions during visits.

We are facing an unprecedented public health crisis, but when we get past it (and we will), the crisis of Alzheimer’s disease and related dementias will remain. 

So, we are doing everything we can to ensure our critical research continues, while prioritizing the safety of our participants and our researchers.  We have also increased our website and social media presence by posting daily resources and messages from our team to support our community during these challenging times. 

We do not know when things will be back to “normal,” but we do know that we will get through this together.

 


Researchers and advocates share messages of hope

 

The COVID-19 pandemic has impacted all of us on personal and professional levels. Here, we compiled sentiments from blogs posted by UCI MIND researchers and advocates during quarantine:

 


Alzheimer’s fundraising during COVID-19

 

COVID-19 has impacted every facet of life, including fundraising for the fight against Alzheimer’s disease and related dementias (ADRD). The UCI MIND donor community includes caregivers dealing with even more daily stress, business owners who are struggling to pay their employees, parents who have become home school teachers, and philanthropists who have redirected their giving during this unprecedented time to help those most vulnerable and on the front lines of caring for people with COVID-19. 

Though the recovery from COVID-19 will take time, our mission to rid the world of ADRD through cutting-edge research remains a priority. We know many of you are answering the call to support your communities in crisis, and supporting UCI MIND may be temporarily delayed. We understand and endorse these decisions. We look forward to a time when the UCI MIND community will once again gather together and we can redouble our efforts to accelerate research through philanthropy. As with COVID-19, Alzheimer’s disease will be stopped through global, collective action.

 

Danny Harper, Senior Director of Development 

Joe Gonzalez, Harriet Harris, Marla Noel, Jennifer Simpson, Keith Swayne, Jonathan Varenchik, & Burton Young, UCI MIND Leadership Council Philanthropy Committee


Conducting clinical trials during a pandemic

 

Q&A with UCI MIND Faculty Member, Daniel L. Gillen, PhD, Professor and Chair of Statistics, Professor of Public Health and Epidemiology at UCI. Dr. Gillen serves on national and international Data Safety and Monitoring Boards evaluating the safety of ongoing clinical trials, and he has participated on multiple FDA advisory panels that are instrumental in deciding which drugs get approved and which do not.

What exactly is a clinical trial?

Gillen: A clinical trial, broadly speaking, is a designed experiment to test and assess an intervention in a human population. We generally think of trials in terms of the phases and a scientific goal. In the drug development process, we have four primary phases of clinical trials. Phase I trials are generally smaller studies that look at a biological component, also known as dosing trials. The goal of a Phase I study is to determine safety, or the maximum tolerable dose in individuals. Phase II studies are proof-of-concept studies that look at the likelihood of efficacy on your outcomes of interest. For instance, if you’re conducting an Alzheimer’s disease (AD) study, are there hints that this drug is lowering amyloid-beta or tau levels in a patient? The goal is to move to Phase III studies, which is what most people hear about in the news. Phase III studies are the penultimate step in the trial process before regulatory approval. They are much larger in size and aim to prove or disregard a new treatment. Phase IV is an active surveillance study which looks at longer-term outcomes, such as AD progression, and safety effects once the drugs are prescribed and used by the community. 

Why are clinical trials essential to find new treatments for AD and other health conditions?

Gillen: It comes down to ethics and efficiency. If you didn’t know the safety and correct dosing level of a drug, you wouldn’t want to experiment on a large number of individuals in a Phase III study; that is the rationale for earlier phase studies. Phase II studies act as screening studies and save time, resources, and number of participants needed. In Phase III, you need to have enough precision to be able to say with confidence that a drug works. My job is to increase the number of effective therapies in the population, and well-designed Phase III studies allow us to do that. Phase IV studies are an ethical consideration, because you wouldn’t want to use urgently-needed drugs, like COVID-19 vaccines and AD interventions, if they don’t work or are harmful. We do want to get these to the population and begin looking at things long-term. There’s a very good rationale for all four phases that we have.

Are clinical trials still necessary during an urgent public health crisis like COVID-19?

Gillen: Sound clinical trials are absolutely critical and necessary, even during a crisis. It is imperative we develop therapies that are safe and known to work. There are individuals who say we should rush to put therapies out based on anecdotal evidence or case studies. That’s not a good idea. At best, if an individual is taking something that doesn’t actually work, it could give false security and would likely preclude them from taking something else that could work. At worst, you’re doing more harm than good. To avoid that, we need well-designed trials that look for imbalances and confounding factors that could alter the associations you may see. We do need clinical trials and strong evidence; however, we may not need all phases in some studies. The drug remdesivir, for instance, blocks mutations for Ebola. We fast-tracked a Phase III trial to see if it lowers recovery time for COVID-19, and its emergency use was recently authorized. It is one of the quickest trials done in history. We will continually vet our data, but we don’t want to avoid the principles of safe and efficacious studies.

In the drug development process, there are four primary phases of clinical trials to ensure safety and efficacy of new drugs.

In the news, we have seen a lot of work toward a vaccine for COVID-19. How long will it take to develop, test, and approve a new vaccine like this?

Gillen: The true milestone would be a vaccine. The UCI research and development team is considering many target candidates. Developing antibodies for these targets could allow us to block the virus. We don’t have the target yet, but these studies will be fast-tracked, and by early 2021 we could optimistically foresee a vaccine. In order to make a vaccine useful, we would need mass-production while the study is ongoing. It’ll take time, and there is likely to be a second wave; but in the meantime, we’ve been bending the curve with important public health practices like social distancing.

During the pandemic, with working remotely and safer-at-home orders, what happens to AD clinical trials?

Gillen: Opinions range from completely shutting down operations to continuing research in certain situations. In accordance with FDA guidance, we want to ensure participant welfare and safety, no matter what. Not all trials are the same. Late-stage therapies may need to continue, while more benign studies could modify certain protocols. At UCI MIND, we’re doing our best to retain individuals in studies, follow their outcomes of interest, and adhere as closely to protocol as possible. Examples of modifications include moving in-person visits to phone or online. Necessary in-person visits may take place in alternate locations, such as a participant’s home. The age range of participants in AD research often places them at highest-risk for COVID-19 associated co-morbidities. We are acutely aware of this as we continue to develop novel and more effective therapies for AD and related disorders while protecting participants. 

Do you think this pandemic will set us back in discovering new and improved treatments for AD and related disorders?

Gillen: In the long run, I don’t think the pandemic will have a significant impact on the development of novel treatments for AD. There will be a short-term impact, as we deviate somewhat from protocols, pause some recruitment efforts, and put nonessential in-person visits on hold. However, I am very optimistic that we will continue to make progress, and I see this as a bump on the road in the longer journey to develop novel and effective therapies.

 


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