An Alzheimer's Disease Research Center
As part of its LiveTalk series, Being Patient spoke with Dr. Jason Karlawish, co-director of the Penn Memory Center and author of “The Problem of Alzheimer’s,” about the advances in dementia research and diagnostics that have allowed for the early detection of Alzheimer’s. Click the headline or the button below to read this article on BeingPatient.com.
By Varshini Chellapilla
If you tested positive for a biomarker of Alzheimer’s disease, whom would you tell? Why?
Penn Program on Precision Medicine for the Brain (P3MB) researcher Emily Largent, PhD, JD, RN, conducted two qualitative studies to understand individuals’ decision-making process as they choose whom, why and how to share information regarding their Alzheimer’s disease biomarker and genetic testing results. The study, titled “‘That would be dreadful’: The ethical, legal, and social challenges of sharing your Alzheimer’s disease biomarker and genetic testing results with others,” was published in the Journal of Law and the Biosciences on May 19.
The studies were done in collaboration with three other researchers from Penn Program on Precision Medicine for the Brain (P3MB): Shana Stites, PsyD, MS, MA; Kristin Harkins, MPH; and Jason Karlawish, MD.
By Varshini Chellapilla
Dr. David Wolk and Grace Stockbower
Clinical Research Project Manager Grace Stockbower, MPH, is moving on from the Penn Memory Center after eight years.
Stockbower came to the center as a research specialist in 2013, after studying psychology and neuroscience at Haverford College. She worked exclusively on studies led by Dave Wolk, MD, PMC co-director.
“We are extremely lucky that we had an opportunity to work with Grace over these last 8 years,” said Dr. Wolk. “She has played a tremendous role in the culture and operation of the Penn Memory Center and our research studies.
Graphic illustration of a T2-weighted MRI with MTL subregion segmentation.
Specialized high-field MRI scanners are some of the most advanced machines in medical research currently and have been equipped to study epilepsy, neurological disorders, and Alzheimer’s disease across many research fields. At Penn, the ultra-high-definition resolution of these MRIs helped researchers study the patterns of atrophy, or loss in volume due to degeneration of cells, in patients with semantic variant primary progressive aphasia (svPPA).
“Volume loss in this region of the brain has been investigated in the past but never with scans as good as these,” said Laura Wisse, PhD, the principal investigator for the study. “With higher resolutions, we were able to measure this particular region of the brain in a much more detailed way.”
By Varshini Chellapilla
Exercise is a key component of maintaining healthy cognitive abilities among older adults. Many studies have shown that physical activity and fitness can lead to improvements in memory retention as well as a reduced risk for cognitive decline.
The National Institute on Aging (NIA) published an exercise book focused on the methods and benefits of physical exercise for older adults. Titled “Get Fit For Life: Exercise & Physical Activity for Healthy Aging,” the book is available to order or download for free on the NIA website.
The book is designed for beginners as well as regular exercisers and provides detailed instructions for simple exercises, worksheets to help construct fitness routines, and activity logs. Also included is a special section designated for older adults with chronic conditions such as arthritis, Alzheimer’s disease, and type 2 diabetes. From stretches between TV commercials to yoga routines, the book comes with links to organizations such as the YMCA who have designed exercise programs that build on endurance, mobility, balance, and strength.
Black adults are underrepresented in Alzheimer’s disease research, even though they are more likely to develop the disease. The Aging Brain Cohort Study Dedicated to Diversity will seek to enroll more Black participants like Jay Austin (above), to combat this disparity. Austin cited this disparity as his motivation for participating in research.
Black adults are more likely than other groups to develop Alzheimer’s disease or related disorders but are poorly represented in Alzheimer’s disease research, including recent clinical trials. This health disparity illustrates how Black individuals can benefit from advances in the field if they had access.
This week, the Pennsylvania Department of Health’s Commonwealth Universal Research Enhancement (CURE) program announced it will award a $3.5 million grant to Penn Memory Center (PMC) researchers and community partners to address the underrepresentation of Black adults in Alzheimer’s disease research. The grant supports the Aging Brain Cohort Dedicated to Diversity (ABCD2) study, a research and training initiative led by David Wolk, MD, a professor of Neurology in the Perelman School of Medicine at the University of Pennsylvania. Wolk is also the incoming director of the Alzheimer’s Disease Research Center, and PMC co-director.
On Feb. 24, Penny Scott-Sedley walked into the Perelman Center, eager for her chance to move towards a safer world after a year of the pandemic.
As an ABC participant, normally she would hear from Penn Medicine about her upcoming ABC visit. However, this time, she received an email from Penn Medicine informing her that she could schedule her appointment for the first dose of the COVID vaccine. Scott-Sedley knew that there would be spring-like weather in Philadelphia on Feb. 24, so with excitement, she planned to receive her dose that Wednesday.
“I always was eager to become vaccinated once a vaccine was developed. It didn’t occur to me not to, especially not after it was reported that Blacks in this country were experiencing a much higher incidence of serious illness once contracting the virus and succumbing to it in higher numbers,” Scott-Sedley began.
Her appointment time was busy, but she noted that the process was extremely well-organized.
“It took no time to get through to the person who would perform the jab, and the wait afterwards for monitoring any adverse reactions was easy-peasy.”
She had no reactions after receiving the first dose of the Pfizer vaccine.
“As a Black woman of a certain age, I was aware of the historical struggle that Blacks have faced from racist and unethical scientists. Think the horrific Tuskegee Institute Scandal. But in this instance, we would not be singled out for the vaccine to the exclusion of other groups. So I considered it to be a safe bet.”
By Varshini Chellapilla
Dr. Elliott Maser and his wife Deborah Maser
Six out of seven days a week, Deborah Maser used to drive herself to Trenton, New Jersey to a jazzercise class in the mornings. She was diagnosed with mild cognitive impairment in 2018 and was an avid jazzerciser. On Wednesdays, her husband used to take the train to Philadelphia to teach at the University of Pennsylvania School of Dental Medicine. Her daughters would visit her that day to make sure she wasn’t alone for more than a few hours.
A routine had been set, only to be disrupted in March.
“When the pandemic struck, jazzercise had stopped – as did dental school, of course – for several months,” Dr. Maser said. “And it became a little bit more stressful because my wife had nothing to do in the mornings.”
The pandemic has seeped into nearly every aspect of caregivers’ lives. With increased health risks, mental stress and adjustments to a virtual world, caregivers across the country found themselves faced with new challenges.
The Penn Memory Center (PMC) began the Caregiver Forums in March 2020 in an attempt to provide caregivers a space where they could talk freely and share advice as they learned to navigate caring for their loved ones during the pandemic.
Most research is conducted with informed consent, a process that allows to the prospective participant to learn about the study through discussion with the investigator or study staff and to decide if participating is right for them. Yet, there are exceptions. In limited and strict circumstances, federal regulations governing human subjects allow for alterations or even waivers of informed consent. (Adobe Stock)
Most clinical trials are conducted in highly controlled environments to study the efficacy of a certain intervention. But the world we live in is often much messier than that.
This is where pragmatic trials come in. Pragmatic trials are designed to study interventions in circumstances that closely approximate actual clinical practice as closely as possible. Some pragmatic trials include subjects who may not know that they are part of a clinical research.
Research conducted by Penn Program on Precision Medicine for the Brain Researcher Emily Largent, PhD, JD, RN, and Stephanie Morain, PhD, MPH, an assistant professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine, looked at the data on public attitudes toward consent for pragmatic trials. The resulting article, published in The Hastings Center Report on April 11, was titled “Public Attitudes toward Consent When Research Is Integrated into Care—Any ‘Ought’ from All the ‘Is’?”
“In order to make research as much like normal life or regular clinical practice as possible, it is often the case that we want to conduct the research without getting informed consent from participants,” Dr. Largent said. “Because once we tell people they’re in research, that can change what happens and who participates.”
“Imagine a healthcare system incapable of diagnosing whether increasing numbers of older adults with weight loss, vague pains and anemia have cancer and, if they did, incapable of treating their cancer and caring for their common complications, such as pain and fatigue. That’s the problem for funding older adults with memory loss. The system is broken and a correction is needed to remedy this.”
An excerpt from Penn Memory Center (PMC) Co-Director Jason Karlawish’s new book “The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It,” the paragraph summarizes the roadblocks faced by people with Alzheimer’s disease and caregivers as they navigate the healthcare system, as identified by Dr. Karlawish.
On March 18, Dr. Karlawish read an excerpt from his book and answered questions about the revolutionary moments of Alzheimer’s disease history, the names of experimental Alzheimer’s drugs, and his personal evolution as a physician at a virtual launch event hosted by PMC to commemorate the release of the book.
Shana Stites, PsyD, MA, MS, was named assistant professor in the Department of Psychiatry at the Perelman School of Medicine.
“I’m so excited for this new adventure. The scientific and professional opportunities are thrilling, and the company couldn’t be better,” said Dr. Stites. “It’s a privilege to have the chance to help improve care and quality of life for persons with Alzheimer’s.”
By Varshini Chellapilla
A common question asked of physicians and surgeons is whether anesthesia, generally given during surgeries, is associated with a risk of developing Alzheimer’s disease or other related dementias (ADRD) in the future.
“It’s not an unreasonable notion that anesthesia would affect brain health,” Dr. Wolk said. “Anesthesia has many effects on the brain, and surgery itself is associated with all sorts of systemic changes in the body and brain.”
Dr. David Wolk
A new study conducted by Penn Memory Center Co-Director and Alzheimer’s Disease Research Center Director David Wolk, MD, in collaboration with colleagues in the Perelman School of Medicine and The Wharton School, observed elderly patients who were exposed to anesthesia during an appendectomy, a surgical procedure performed to remove the appendix, and then followed post-operation to determine if there was an association between anesthesia and development of clinical Alzheimer’s disease. The study, titled “Alzheimer’s Dementia After Exposure to Anesthesia and Surgery in the Elderly,” was published in the Annals of Surgery in the November 2020 issue.
PMC co-director Jason Karlawish, MD, coauthored the Global Council on Brain Health’s (GCBH) recent report COVID-19 and Brain Health: The Global Council on Brain Health’s Recommendations on What to Do Now.
Dr. Karlawish is a member of the GCBH and serves on its Governance Committee. The GCBH is an AARP collaborative of scientists, health professionals, scholars, and policy experts from around the world who are working in areas of brain health related to human cognition and who strive to provide the best and most recent scientific insights into brain health to help people lead their best lives.
In their special report, Dr. Karlawish and his fellow GCBH members warn that, in addition to COVID-19’s widely known respiratory effects, the virus can also damage brain health. The report offers ten suggestions to maintain brain health during the pandemic, as well.
by Varshini Chellapilla
A direct-to-consumer blood test for a key Alzheimer’s biomarker may be “inevitable,” but Penn Program on Precision Medicine for the Brain (P3MB) researchers warn that receiving results from such a test comes with potential challenges.
Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, and P3MB researcher Emily Largent, JD, PhD, RN, with co-author Anna Wexler, PhD, weighed the risks and benefits of these blood tests in a recent article for JAMA Neurology, titled “The Future is p-Tau – Anticipating Direct-to-Consumer Alzheimer’s Disease Blood Tests.”
Alzheimer’s disease has three main biomarkers, or medical indicators in the body that characterize the disease: the build-up of amyloid proteins in the brain disrupting the functions of neurons, the loss of function and structure of neurons, and tau-protein tangles formed inside neurons.
“While amyloid has historically attracted a lot of attention, in the last year, a lot of interest started to grow around blood-based biomarkers, particularly the marker of tau,” Dr. Largent said.
Date: March 18, 2021
Time: 4 p.m. to 5 p.m.
Location: Zoom
Registration Required
The Penn Memory Center is hosting a virtual event to celebrate the release of PMC co-director Dr. Jason Karlawish’s book, The Problem of Alzheimer’s. We cordially invite all PMC friends and family to join. Click here to register.
Dr. Karlawish will be joined by Barbara Grosz, PhD, daughter of a Penn Memory Center patient, to discuss and read from the book, followed by a question & answer with the audience.
The world of Alzheimer’s disease has a complicated landscape to navigate. Neighborhoods, defined by their resident caregivers, patients, researchers, or policymakers, are constantly redefining their borders.
On Tuesday, February 23, Jason Karlawish provides a map to guide us through this world.
The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It, published by St. Martin’s Press. The Problem of Alzheimer’s looks to the disease’s past to explain its present and prepare for the future, combining Karlawish’s areas of expertise as a researcher, physician, and storyteller.
by Kamila Ahmad and Varshini Chellapilla
People living with cognitive impairment often are able to make their decisions independently. But as their condition changes, their decision-making abilities change as well.
How should people living with mild cognitive impairment or mild stage dementia, their families, and physicians navigate this typically slow and difficult transition? Is there some livable space between what seems to be two extremes — either to try one’s best or surrender and let others take over?
In a recent paper “Supported Decision Making With People at the Margins of Autonomy,” researchers at the Penn Program on Precision Medicine for the Brain (P3MB) provided a comprehensive ethical argument in support of a third way. The authors argue for a novel approach to decision making, called supported decision making.
“We felt like there was a good space for us to look at the tool of supported decision making and think about how that could be used to help people who have progressive, neurodegenerative diseases maintain their autonomy to the greatest extent possible,” said P3MB Researcher Emily Largent, PhD, JD, RN, an author of the research paper.
Additional authors included PMC Co-Director Jason Karlawish, MD, and Andrew Peterson, PhD, assistant professor of philosophy at George Mason University. Their work was published in the American Journal of Bioethics.
Gerry Alexander, right, and Maddy Larkin read “The Glass Menagerie” by Tennessee Williams during a recent Weekly Smile session. Knowing that Alexander had acted in community theater, Larkin sent him a copy of the play, along with other readings.
In the middle of the pandemic, many older adults have found themselves more isolated than before, with their connection to the outside world restricted and the emotional toll of being at a higher risk for the virus. A national survey conducted by the University of Michigan National Poll on Healthy Aging found that 56% of older adults reported that they were feeling of isolated in June 2020.
During this time, the Penn Memory Center offers an iteration of the Time Out Respite Care program, which encourages social engagement and companionship in the lives of older adults with cognitive impairments by connecting them with college students.
Titled Weekly Smile, the program started in June and is run by Meg Kalafsky, a research and program coordinator at the PMC. It is conducted completely online. Students and older adults chat and engage with each other via video call or the phone for 45 to 60 minutes per week.
“The previous program was set up to have positive impacts on people’s anxiety, depression and overall stress levels,” Kalafsky said. “I think, with the current version, what we’re really effective at changing is someone’s stress and their isolation. I think it’s been challenging, but also at the same time, I think one of the real benefits of this pandemic is that people are really willing to try something new and to be creative.”
Dr. Li-San Wang
A team of researchers led by Li-San Wang, professor of pathology and laboratory medicine in the Perelman School of Medicine at the University of Pennsylvania, has been awarded a two-year pilot grant expected to total $4.8 million from the National Institute on Aging (NIA), part of the National Institutes of Health, for studies of the genetics of Alzheimer’s disease in people of Asian heritage.
Alzheimer’s disease (AD), the most common cause of dementia among seniors, affects about 6.5 million people in the United States and Canada combined. Its prevalence is expected to increase significantly in the coming decades as these countries’ populations age. The cause or causes of AD are still unclear, and success testing therapeutic targets to slow or stop the disease process has been elusive in the last two decades despite many clinical trials. Scientists continue to seek clues to the disease’s origin in large genetic studies as well as studies of lifestyle and other factors. But while susceptibility to diseases may differ by ethnicity, and indeed small genetic studies suggest that Asians may have a distinct set of genetic risk factors for Alzheimer’s, studies of this disease (and many other complex diseases) so far have recruited mostly populations of European ancestry.
Penn’s Alzheimer’s Disease Research Center is holding an Aging Research Summer Internship from June 12th to August 11th, 2023. Interns will receive hands-on aging research experience and faculty mentoring. Applications are due to jedrzmk@pennmedicine.upenn.edu by March 17th.
by Sally Sapega
Every Monday, Milla, a patient at the Penn Memory Center, sits at a laptop in her home, virtually “hanging out” with Emily, a student at Temple University. Despite having memory issues from dementia, she remembers her buddy from week to week. Emily often brings her dog to the virtual visits and Milla enjoys saying hello.
“I’m at the house working but I can hear them laughing and talking,” said Milla’s niece. “It makes me feel good that she has this good time for an hour every week. They really connected.”
Welcome to Weekly Smiles, a partnership between Penn Memory Center and Temple University that is virtually helping to fill a social interaction need for the elderly that COVID has intensified.
By Varshini Chellapilla
When the coronavirus pandemic began, there was great concern about the allocation of scarce healthcare resources like ventilators, ICU beds and hospital staff.
In large cities like New York, health policy experts feared that hospitals would be overwhelmed by patients needing lifesaving treatment. In some rural areas, health policy experts were also concerned many hospitals did not have the resources they needed to care for patients seriously affected by the novel coronavirus.
“In public health emergencies, there’s always a concern about finite resources,” said Andrew Peterson, PhD, a researcher with the Penn Program on Precision Medicine for the Brain. “How you distribute those resources to patients in need is ethically complicated.”
Dr. Peterson, an assistant professor of philosophy at George Mason University, in collaboration with colleagues at The University of Manchester, conducted a study to understand the opinions of average Americans on these allocation decisions in the pandemic. The study, titled “Public attitudes toward allocating scarce resources in the COVID-19 pandemic,” was published on Nov. 4 in scientific journal PLOS ONE.
By Varshini Chellapilla
When studying the risk factors that affect cognitive impairment and dementia among older adults, researchers often focus on how each factor, alone, causes cognitive impairment. But what happens when these factors are examined simultaneously? How do these factors affect people across various groups?
Weiss and his team found that the five major predictors across all groups were lower education, loneliness, lower wealth, lower income, and lower self-reported health. However, these predictors varied across racial/ethnic and gender groups.
“Whereas most prior work has focused on linking a specific risk factor to dementia, our goal was to systematically and simultaneously identify the top predictors of dementia and how they varied across groups defined by race/ethnicity and gender,” Weiss said.
Jay Austin was the first study participant to return to the Penn Memory Center after in-person testing was resumed.
Jay Austin
Before his visit in July Austin, a participant of the Aging Brain Cohort (ABC) study, had to undergo COVID-19 pre-screening as part of safety protocols. On the day of his appointment, he walked into the Perelman Center for Advanced Medicine, he was greeted by volunteers in masks and personal protection equipment who would check his temperature.
“I think, with all of the safety precautions, I felt really good and very safe and very secure about everything PMC was doing,” Austin said. “Every individual that assists in coordinating the scheduling and conducts the research has just been amazing. So helpful and thoughtful in staying in touch, advising of the process and necessary steps, as well as being available to accompany me throughout my entire time inthe Penn facilities.”
In March, most of the world shut down. As streets emptied and entire countries went into lockdown in an effort to restrict the spread of the novel coronavirus, the doors of the Penn Memory Center closed too.
Dr. Hamilton is a neurologist and practicing clinician at PMC, an associate professor in the Departments of Neurology and Physical Medicine and Rehabilitation, and is director of both the Laboratory for Cognition and Neural Stimulation (LCNS) and the Brain Science, Translation, Innovation and Modulation Center (brainSTIM).
Dr. Hamilton also strives to advance diversity and inclusion at Penn, serving as assistant dean for cultural affairs and diversity for the Perelman School of Medicine and vice chair of diversity and Inclusion for the Department of Neurology.
Learn more about Dr. Hamilton’s work here, and read the full Cell Press list here.
By Cait Kearney
The ActiviDaily study is taking “there’s an app for that” to a new level of significance.
Principal Investigators Dawn Mechanic-Hamilton, PhD, and Lauren Massimo, PhD, CRNP, research coordinator Sean Lydon, and app developers Alex Miller, MS, and Dan Schiffrin created a smartphone application called ActiviDaily to help individuals with cognitive impairment who have difficulty planning, starting and completing their daily activities.
The app includes features for selecting individualized goals such as physical activity, cognitive stimulation, and engaging in hobbies. Alerting mechanisms are programed to help initiate behaviors to attain goals. Calendars and checklists simplify the activities in a step-by-step fashion, and rewards such as music or games are used to motivate the individual to attain their activity goals.
“The main thing we’re hoping to get out of the app is to improve quality of life for patients by getting them more involved in activities,” said Lydon.
The Virtual Visiting Scholars Program hosted by the Perelman School of Medicine’s Institute on Aging is hosting a pane titled “Pandemic and Prejudice: Lessons from COVID-19 about Aging in America” with keynote speaker Louise Aronson.
Dr. Aronson is a professor of medicine at the University of California, San Fransisco Division of Geriatrics. She is a geriatrician and writer who has published books on what it means to age in our society, and the history of health and illness in San Fransisco. Additionally, she has served as the director of the Northern California Geriatrics Education Center. She has received multiple awards for her work such as the California Homecare Physician of the Year, the Gold Professorship in Humanism in Medicine, and American Geriatrics Society Clinician-Teacher of the Year.
The panel will be held on Feb. 3 at 12 p.m. Register online for a link to the virtual webinar.
Credit: Adobe Stock
Peggy Williams has seen her husband only three times since March. Jack Williams, who was diagnosed with Alzheimer’s disease in 2013, is a resident at a long-term care facility that locked down at the very beginning of the coronavirus pandemic.
The last time they met, a plexiglass wall stood between them as they maintained a distance of six feet from one another. With Jack’s hearing problems, the masks, and the traffic from the road, Peggy had to yell to be heard.
“I didn’t even know that Jack started to gain a lot of weight and his clothes weren’t fitting him until the first time on the porch visit,” Peggy said. “Because I’d only seen him from the shoulders up on FaceTime. And Jack, of course, can’t communicate with me. His verbal skills are almost gone.”
At the end of the visit, Jack was upset. He couldn’t understand why his wife had to leave.
“They’ve kept Jack safe from COVID but, as far as emotionally and the mental toll, it’s been hell,” Peggy said. “It’s almost like he doesn’t exist anymore. The world just gets smaller and smaller, and it’s been really hard.”
Mehek Dedhia, left, and Hannah Cao
Two student researchers from the Penn Memory Center delivered key presentations on the measurement of gender and the effects of stigma in Alzheimer’s research at the Alzheimer’s Association International Conference – Neuroscience Next (AAIC-NN) in November.
Mehek Dedhia, a sophomore at the University of Pennsylvania studying neuroscience, and Hannah Cao, a Master of Social Work graduate student, presented at the neuroscience conference that promotes the work of early-career researchers and students in the field.
Dedhia and Cao’s presentations were produced under Shana Stites, PsyD, MA, MS, a researcher at the Penn Program on Precision Medicine for the Brain (P3MB). Dr. Stites’s research aims to understand the ways in which quality of life and psychological wellbeing can be improved for those with Alzheimer’s disease dementia. Her work focuses on how aspects of identity (such as age, gender, and race) affect the disease experience.
Andrew Peterson, PhD, an affiliate researcher at the Penn Program on Precision Medicine for the Brain (P3MB), was announced as one of the recipients of the State Council of Higher Education (SCHEV) 2021 Outstanding Faculty Award.
The award recognizes faculty at Virginia’s institutions of higher learning for the highest standards of teaching, scholarship and service.
Why does disease progress faster in some people than in others? Why do some individuals have a higher risk of developing Alzheimer’s disease?
This diversity is referred to as heterogeneity. If researchers can better understand why, for example, one patient begins demonstrating symptoms of Alzheimer’s disease at the age of 65, but another patient begins demonstrating symptoms at the age of 85, then it may lead to more personalized treatments for individuals and improved clinical outcomes.
Dr. McMillan studies the heterogeneity of neurodegenerative diseases by examining large sets of DNA samples.
A 2016 video introducing the Cognitive Comedy program.
By Varshini Chellapilla
On the Tuesday before Halloween, Glinda the Good Witch, an Italian hotelier with a penchant for wine, a princess with rainbow hair, the Wicked Witch, and an absent-minded man joined together gathered on a video call as part of the Penn Memory Center’s Cognitive Comedy program.
Participants of the program dressed in costumes or assumed different personas to engage in a weekly improv comedy class hosted by Meg Kalafsky, a program and research coordinator at PMC.
When the coronavirus pandemic began, there was great concern about the allocation of scarce healthcare resources like ventilators, ICU beds and hospital staff.
In large cities like New York, health policy experts feared that hospitals would be overwhelmed by patients needing lifesaving treatment. In some rural areas, health policy experts were also concerned many hospitals did not have the resources they needed to care for patients seriously affected by the novel coronavirus.
“In public health emergencies, there’s always a concern about finite resources,” said Andrew Peterson, PhD, a researcher with the Penn Program on Precision Medicine for the Brain. “How you distribute those resources to patients in need is ethically complicated.”
Dr. Peterson, an assistant professor of philosophy at George Mason University, in collaboration with colleagues at The University of Manchester, conducted a study to understand the opinions of average Americans on these allocation decisions in the pandemic. The study, titled “Public attitudes toward allocating scarce resources in the COVID-19 pandemic,” was published on Nov. 4 in scientific journal PLOS ONE.
Around the time Roy Hamilton, MD, MS, was completing his neurology training, his father began developing memory-related issues. Dr. Hamilton noticed that his father was repeating himself in a conversation, forgetting important names, and having trouble with financial management and route finding.
At the 2020 Alzheimer’s Disease and Related Disorders (ADRD) Forum on Nov. 5, Dr. Hamilton spoke about his personal experience with the disease.
“Even though at the time I was training to become a neurologist, there were a lot of thoughts that went through our minds and different ways of framing what was happening to my father, that sort of got in the way of a clear-eyed view of what was actually happening,” he said. “A lot of thoughts went through our minds that may have gotten in the way of him getting the kind of care that he needed initially, even though he was the father of a neurologist and someone who is going to become a cognitive behavioral neurologist who sees patients with Alzheimer’s disease.”
Dr. Hamilton is currently a physician researcher at the Penn Memory Center and served as the keynote speaker at the ADRD forum hosted by the Pennsylvania Department of Aging.
By Varshini Chellapilla
The Penn Memory Center (PMC) will continue research on aducanumab after an independent panel advised against Food and Drug Administration approval of Biogen’s Alzheimer’s disease drug, stating a lack of convincing evidence of efficacy.
On Nov. 6, the 11-member advisory panel of neurologists and other medical experts discussed and examined the data from the clinical trials as well as other aspects of Biogen’s case in a seven-hour-long virtual meeting. Of the two Phase 3 trials, only one trial, EMERGE, showed successful results. The panel argued that that the single positive aducanumab trial was not enough evidence to support the drug’s potential success.
PMC Co-Director David Wolk, MD, said the results of the advisory panel do not imply the ineffectiveness of the drug.
“Instead, it means that there was not enough evidence of efficacy, in the opinion of the committee, to approve at this time,” Dr. Wolk said. “In fact, the data from aducanumab and some other recent trials of drugs with similar mechanisms suggest that targeting amyloid may indeed influence disease progression and ultimately have benefit.”
By Varshini Chellapilla
Previously, she worked at the University of Pittsburgh Medical Center where she was involved with clinical trials for a smoking cessation study for schizophrenia.
Purohit studied psychology at Mumbai University in Mumbai, India and earned her Master’s degree in psychology from Chatham University in Pittsburgh, Pennsylvania.
She began working at PMC in 2018. Purohit was responsible for administering cognitive and neurological assessments to research participants and patients.
“It was a pleasure to work with Mitali,” Dr. Dawn Mechanic-Hamilton said. “She was a great team member. She will be missed by the PMC, and we wish her a joyful time with her family and the best of luck in her future career.”
Anna Kozlowska, a master of social service intern at the Penn Memory Center, held up a picture in front of her camera. The picture showed a young woman playing in the guitar on a park bench. She posed simple questions to her audience of ten – Who is the young woman? Why was she there? What was she doing?
An hour later, the young guitarist’s story had been told by the participants: She was a musician who missed her husband while he was away at war; she was singing a song about the beauty of nature; she was someone who loved making music.
“It’s kind of like making a necklace from beads,” Kozlowska said. “We kind of string our thoughts and feelings together, and we read as it goes.”
Today, according to the Alzheimer’s Association, more than 5 million Americans live with Alzheimer’s disease. Approximately 15 million Americans are providing care for a loved one with Alzheimer’s disease.
How is your future and the future of your loved ones affected by Alzheimer’s disease? What can we do to help those living with dementia and the caregivers providing assistance for them?
On Oct. 28, in collaboration with Alpha Kappa Alpha Sorority’s Omega Omega chapter, the Penn Memory Center hosted a panel titled “Memory and the Aging Brain.” Sharnita Midgett, a clinical research and outreach coordinator at PMC, and Felicia Greenfield, executive director of PMC, served as panelists, covering a wide range of topics – from the maintenance of healthy brain aging to participation in research programs.
“For me, it is important to share all I’ve learned and continue to learn about Alzheimer’s disease with others who are caring for a loved one,” Midgett said.
A collaborative effort is seeking nominations for people with dementia and their caregivers to participate in a panel that will engage with researchers in an attempt to improve the design of research and clinical trials. These research interventions could then, in turn, improve the lives of the patients and their loved ones.
The National Institute on Aging (NIA) IMbedded Pragmatic Alzheimer’s disease and AD Related Dementias Clinical Trials (IMPACT) Collaboratory and the Alzheimer’s Association are jointly organizing the “Lived Experience Panel” to provide feedback to researchers and discuss methods for studying non-medication interventions that can improve the quality of life of patients and their loved ones.
The Penn Memory Center (PMC) has been actively involved with IMPACT to support efforts to conduct pragmatic clinical trials of interventions with healthcare systems for those living with dementia and their caregivers. Drs. Jason Karlawish, co-director of PMC, and Emily Largent, a Christopher M. Clark scholar at PMC, lead the ethics and regulation core of the Collaboratory. Kristin Harkins, a PMC research program manager, serves as the project manager for the core.
By Varshini Chellapilla
Clinicians and philosophers struggle to answer an ethically charged question: Are advance directives for people living with dementia useful? A recent essay suggests an entirely new way approach to answering this question. The authors include Penn Memory Center Co-Director Jason Karlawish, MD, and his colleague David Lyreskog, PhD.
Advance directives are documents prepared to guide care for someone who is unable to make their own health care decisions. They contain information about the person’s preferences for care. They’re also called “a living will.” They have an obvious appeal to guide the care of persons living with dementia, a condition that stereotypically impairs decision-making abilities.
Drs. Karlawish and Lyreskog, along with Saskia Nagel, PhD, of RWTH Aachen University, argue for an entirely new way of thinking about autonomy in persons living with dementia. Their argument was published in the August 6 issue of The American Journal of Bioethics under the title, “Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia.”
If a person living with cognitive difficulties expresses a desire to vote, he or she ought to be assisted as needed to legally and effectively cast that vote.
This was a key message Thursday as the Penn Memory Center and Enon Tabernacle Baptist Church discussed the 2020 election.
“Truly when we vote, we lift up our voices in one great chorus,” said Jason Karlawish, co-director of the Penn Memory Center. “One vote at a time, we all become many. For most of us, this is a very private and personal act that we do. But some of us need help to vote. Some of us need someone else to help make our voice heard.”
Researchers at the Penn Memory Center have discovered a new and rare form of dementia, which they have called vacuolar tauopathy.
They have observed and determined that the progression of symptoms differs from that of dementia caused by Alzheimer’s disease. Where Alzheimer’s disease is focused on memory issues early in the disease, this type of dementia affects behavioral, language and executive problems instead.
The way researchers measure the possibility of an older adult developing Alzheimer’s disease is changing.
Researchers from the University of Pennsylvania Perelman School of Medicine — Edward Lee, assistant professor of pathology and laboratory medicine, and Mingyao Li, professor of biostatistics — collaborated to analyze alternative methods of examining brain cells to existing ones.
Old methods involved grinding up the brain to study the disease, which made it impossible to study the complex cell characteristics unique to each different type of brain cell. “The new technology is that there are ways to look at individual cells, one at a time, to understand what genes are being expressed in those cells,” said Dr. Lee.
Inspired by a family history of Alzheimer’s disease, Lea Brovedani joined the ABC study in 2019. A mother of 2, Brovedani dedicated her time to the study with the future of her family and others in mind.
And not even the COVID-19 pandemic would keep her from living up to that dedication.
“I don’t think that research should stop because of this,” said Brovedani, who had a PET scan in July. “So many things have completely halted because of the pandemic, and I am certainly supportive of taking as many precautions as possible. But I still believe that in order for us to find answers for anything — including the pandemic, including Alzheimer’s, including different forms of cancer — that research needs to continue. I trust that Penn has my best interest at heart as well and will do everything to keep me safe.”
Aging can present many opportunities and challenges. Join Lisa Walke, MD, MSHA, AGSF, Chief of Geriatric Medicine at Penn Medicine, to learn more about some of the most common chronic health conditions we face as we age, such as arthritis, diabetes, hypertension, obesity, and more. Dr. Walke will share tips for managing your health as you age and tools for living well with chronic illness.
Lisa M. Walke, MD, MSHA, AGSF is the Chief of the Division of Geriatric Medicine for the Perelman School of Medicine of the University of Pennsylvania. Under her leadership, the division is developing clinical, research and educational programs that will foster Penn’s development into an Age-Friendly Health System. Dr. Walke’s scholarship focuses on improving health outcomes for older adults through the implementation and evaluation of innovative care delivery models. She was named a fellow of the American Geriatrics Society (AGS) in 2014, received the AGS Outstanding Mid-Career Clinician Educator of the Year award in 2017 and was named a Top Doctor in Geriatric Medicine by Philadelphia Magazine in 2020.
Questions? Contact Shakia Bundy, sbundy@ralstoncenter.org
Join the Penn Memory Center and the Time Out team in a new, 8-week virtual exercise program: Shake It Up.
Led by Alice, Janelle, and Meryl, students in the Temple University Exercise and Sport Science program, Shake It Up will meet on Zoom at 1:30 p.m. on Wednesdays beginning September 30. The program will focus on coordination, muscle activation and meditation. This program is open to all members of the Penn Memory Center community, including all levels of mobility and care partners.
The class is free, but RSVP is required.
Questions? Contact timeout@temple.edu or leave a voicemail at 215-204-3364.
Jordan Weiss, PhD
Dementia may play a larger role in US mortality than standard statistics show, according to research published in JAMA Neurology.
Former Penn Memory Center trainee Jordan Weiss, PhD, and co-authors studied more than 7,000 adults in a nationally representative cohort and combined the data with cause-of-death records on death certificates. They found that “the estimated percentage of deaths attributable to dementia was 2.7 times that calculated from vital statistics data on the underlying cause of death.” The authors explain that underreporting could be because of comorbidities and/or missing diagnoses.
The results further support the need to expand population-based interventions focused on dementia prevention and care, authors said.
“Our findings suggest that the mortality burden associated with dementia may be greater than recognized. Moreover, racial and ethnic disparities in dementia mortality may be underestimated,” Dr. Weiss said. “Together, these results highlight the importance of expanding dementia prevention, care, and awareness in a culturally sensitive way to address the disproportionate burden of dementia faced by underrepresented minorities.”
Studies to discover new treatments for Alzheimer’s disease have been revolutionized.
A person who has no cognitive problems — who’s busy working or traveling or caring for grandchildren — can undergo a PET scan to determine whether she has “elevated amyloid,” a high level of a protein associated with a heightened lifetime risk of developing dementia caused by Alzheimer’s disease.
If it were you, how would you react?
Researchers participating in the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Disease (A4) Study are learning the answers to this important question. In the August 2020 issue of JAMA Neurology, “Short-term Psychological Outcomes of Disclosing Amyloid Imaging Results to Research Participants Who Do Not Have Cognitive Impairment” reports people who learned they had elevated amyloid did not experience an increase in negative psychological outcomes particularly depression and anxiety.
Mid-morning on a Wednesday in early May, Jean Haskell tries to quiet a dozen chatty adults on a Zoom call. “Alright, everybody, we’re going to start. We’re going to do a lot today. We’ll be getting ready for a performance next week, and we’ll be telling some jokes.”
She asks participants to say their name along with an adjective and gesture for everyone else to copy.
“My name is Charles. An adjective? Crude,” says one person, before holding up his thumb in hitchhiker fashion. There’s a collective chuckle.
Hellacious Helen makes horns on her head with two fingers and Suspicious Susan pretends to hold a telescope up to her eyes. After each one, the participants mimic the speaker, laughing at the silliness of it all. But as Haskell—who introduces herself as Jazzy Jean, replete with jazz hands—hoped it would, the exercise breaks the ice perfectly.
The impact that blood pressure has on dementia risk has often been studied, and new research continues to study this relation. This year, researchers found that an average higher blood pressure in black individuals may contribute to racial differences in dementia risk.
In an article titled, “Association Between Blood Pressure and Later-Life Cognition Among Black and White Individuals,” researchers analyzed data from five other studies related to heart health and stroke. These studies provided demographic data — information on race and sex — as well as data on brain health. Black Americans had a significantly faster decline in brain health and had a higher cumulative blood pressure than white Americans, according to the data in this study.
One of the researchers, Deborah Levine, MD, MPH, is an associate professor at the University of Michigan who has studied disparities in cardiovascular and brain health. She was motivated by her clinical experience seeing disparities across racial, ethnic, sociodemographic, and geographic backgrounds and was also “motivated by a sense of justice that disparities should be reduced if not eliminated.”