A National Institute on Aging-designated Alzheimer's Disease Center
University of Pennsylvania neuropathologist Edward Lee, PhD received a grant from the National Institutes of Health (NIH) and the National Institute on Aging (NIA) to support a new career development workshop in neuropathology.
The grant allows up to 20 American Association of Neuropathologists (AANP) scholars to attend the three-year workshop. It will focus on promoting “Neurodegenerative Disease Neuropathology Research,” and Dr. Lee will co-direct the workshop.
Penn Memory Center Scholar, Dr. Shana Stites was featured on Fox29’s GoodDay Philadelphia this Wednesday. Dr. Stites spoke about Alzheimer’s disease’s affect on personality and behavior with caregiver and Fox29 employee Renee Odrick.
“Dementia is this umbrella, this collection of different types of symptoms…what’s causing that is different pathologies in Alzheimer’s.”
Dr. Stites has studied the effects of stigma on public perceptions of Alzheimer’s disease and researched the impact of disclosure of amyloid test results to people with elevated risk of the disease.
Watch the full segment on Fox29’s website here.
Michael Duong is expectantly waiting for the final product of his grandfather’s latest work of art: a clock.
He remembers when he would come home from kindergarten and marvel at the doodles of toys around the house, everyday items or fantastic chimeras and other mish-mashes of animals his grandfather would dream up.
But that was long before his grandfather received an Alzheimer’s diagnosis. Now Michael is administering a simple cognitive test where his grandfather has to draw a clock reading “8:20”.
A second-year medical student at the University of Pennsylvania, Michael splits his time between Philadelphia and his Lansdale home where he, his mother, father, and maternal grandparents live after emigrating from Vietnam between the 1970s and late 1980s.
“I found one way to reconnect with him: reprising my role as his personal art appreciator and collector,” Michael wrote in The Art of Caregiving, which appears in August’s edition of JAMA Neurology. His writing on the caregiving experience has also led him to be featured in Science and Penn Today.
He sees the drawings as emblematic of both the caregiver experience as well as the pattern of decline in Alzheimer’s. The clocks vary in detail and accuracy. One sketch from 2018 includes hands and evenly spaced numbers, and while earlier versions just have 8:20 scrawled on the middle of the face.
“It’s not a smooth slope, but more of a roller coaster with highs and lows,” Michael said.
In “The Art of Caregiving”, he outlines that the process of caring for his grandfather was as much about taking care of a loved one as it was learning the very meaning of family, love, and relationships.
“Caregiving is a labor of love. Families give care to loved ones as filial love. Clinicians ease patients’ pain as brotherly and sisterly love,” Michael wrote.
For Michael and his family, even outside of his grandfather’s diagnosis, it has been far from a linear progression to get to where they are now.
Michael Duong’s grandfather’s clock drawings from 2017-2018
During the Vietnam Civil War, Michael’s grandfather was working in the Department of Labor in South Vietnam. His grandfather told him of the chaos and fear around the North Vietnamese invasion that caused many people to flee. His grandfather only had enough money to send his two children, Michael’s mother and uncle, on wooden boats to a small refugee camp on an island outside of Malaysia. They waited for a year on the island until a sponsor family provided them passage to the United States.
“I can’t imagine how it felt for them, leaving their family and home behind, or my grandparents, watching their kids venture into the unknown,” said Michael.
His mother knew Vietnamese and French when she and her brother came to the U.S .and even with a language barrier, she studied well enough in school to get into UPenn for electrical engineering where she met Michael’s father. They found a close-knit Vietnamese community in the area after graduation and eventually saved up enough to bring Michael’s grandparents over in the 1980s.
“That grit from my mother is something I feel I have and inspires me today,” Michael said.
Growing up alongside his grandparents, Michael said the family had noticed common memory slips like lost keys, but the gravity of his grandfather’s situation was truly apparent one winter evening.
Michael had walked into his living room after school one day to find his grandmother alone, the empty cushion next to her was practically reserved for Michael’s grandfather. He felt something was off. When he asked where his grandfather was, his grandmother said he was in the garage working on the car. Michael searched for his grandfather in the garage, only to find the door open and the car missing.
Michael and his family drove around for hours looking for his grandfather. As the hours passed, they called the police.
“It was getting later, and it had snowed the day before. We were all very worried,” Michael said.
Fortunately, they found his grandfather. He was physically alright, but for Michael, the memory underscores the importance of finding a viable treatment for Alzheimer’s.
While watching his grandfather’s progression with Alzheimer’s, Michael dedicated himself to studying neurology and neuroscience, finding answers in and out of the classroom. In addition to enrolling in up to eight classes a semester, he also commuted home to landsdale every evening to help out around the house and care for his grandfather.
One of those classes was a graduate-level course in public health in cognitive aging and Alzheimer’s taught by Memory Center co-director Dr. Jason Karlawish. Michael, then a sophomore, had experience taking higher level courses in his previous semesters and petitioned Dr. Karlawish to attend the class.
“I replied with a cautionary warning about the content but, sure, I said he could enroll,” Dr. Karlawish said, “I’m so pleased I did. Michael was among the most engaged and thoughtful students I’ve taught.”
Michael’s advanced coursework allowed him to finish his undergrad degree in two and a half years. But he had loftier aims than the highest GPA or an expedited path to a career in medicine and public health. For Michael, the main goal was to give his grandfather a chance to watch his grandson graduate.
“Grandpa always stressed how important a college education was. He always held that up and it was important to me that he could be there when I graduate,” said Michael.
However, as the Alzheimer’s progressed, Michael’s grandfather was not able to attend the ceremony but his family made sure to include him in the festivities afterward, Michael noted.
Now as a second-year medical student at the Perelman School of Medicine College at UPenn, Michael has accumulated experience in a variety of research projects and labs including working with PMC co-director, Dr. David Wolk and Dr. Ilya Nasrallah in the Penn Image Computing Lab, identifying new and better predictors of Alzheimer’s and dementia. He hopes to bring this research and the collaboration of other clinicians and researchers into developing areas where neurodegenerative diseases are not always well-understood and precision care is limited.
He envisions a new take on medicine, dubbed “precision neuroscience,” predicated on creating tests and treatments that can focus on the genetic and biological differences among certain populations.
These diagnostic tools would consider how one’s ethnicity may place them at a higher or lower risk of cardiovascular disease or the genetic components related to Alzheimer’s disease, Michael explained.
“I want to incorporate and work with many different populations and develop tools that take their individuality into account,” he said.
He hopes to bring this level of care to his family’s home of Vietnam, an avenue that’s starting to open up with the Perelman School of Medicine’s collaboration with Vietnamese conglomerate, Vingroup on a Center for Engagement in Southeast Asia.
Along with leadership from the Center for Global Health, Vingroup and UPenn will provide undergraduate and graduate medical training programs for students in VinUni and enhance graduate medical education and healthcare provisions in Vietnam’s largest, private nonprofit healthcare system, Vinmec. Both VinUni and Vinmec are Vingroup subsidiaries.
One was drawn almost 20 years ago, prior to the diagnosis and the other, in 2018. Michael sees the blue elephants still resemble each other two decades on.
“In helping Grandpa draw again, I see how unsung duties of caregivers transform everyone,” Michael writes, “caregivers have an opportunity to serve those in need and cultivate humanity.”
Elder financial abuse is a growing problem. The perpetrators are not just phone scammers and greedy relatives, but professionals whose duty is to care for a disabled older adult. They gain and exploit an older adults’ trust, resulting in major financial losses. Terry Ann McIntosh, 75, was one such victim.
McIntosh was scammed by a woman she hired as a home caregiver who gained access to her Bank of America account through phone representatives despite failing security questions. No one at the bank notified McIntosh, not even during her weekly visits to her branch, according to Bloomberg News.
Financial institutions filed 63,500 suspicious activity reports to the Consumer Financial Protection Bureau in 2017, quadruple the amount four years ago, for $1.7 billion in losses, Bloomberg reports. But some experts believe that this is just the tip of the iceberg.
The CFPB told Bloomberg that all reports may account for less than 2% of incidents. One financial services firm estimated $36.5 billion in losses from financial abuse for the same year.
“We have a public health problem and yet we don’t even know how big it is and key actors aren’t stepping up to do their part. This chaos and absence of reporting are unacceptable,” said Jason Karlawish, co-director of the Penn Memory Center and creator of the concept of whealthcare, a public health call to action to the healthcare and financial sectors to work together to detect, prevent and document elder financial abuse.
The National Adult Protective Services Organization (NAPSA) and Philadelphia Corporation for Aging have developed two new initiatives to address the under-reporting and failure to act.
The first is an improved version of NAPSA’s National Guidelines for elder financial abuse protection. This update takes shape in streamlining old forms and protocols from 2013, such as its Official Request for Customer Records, a form that helps APS investigators obtain necessary financial documents and information for pursuing instances of abuse. In simplifying these processes, NAPSA hopes to generate standardization of its resources between financial institutions and adult protective services. The goal is to make it easier to track, and therefore measure, the size and severity of the problem of financial abuse.
The second is the creation of a National Clearinghouse on Financial Exploitation. The clearinghouse is a consolidated, comprehensive source for anyone looking for answers to questions, links to resources, introduction to partners and problem solving regarding financial abuse. You can submit an inquiry here to access the clearinghouse.
Karlawish applauds these initiatives. “These are precisely the kinds of policies and resources Americans need to protect their health and wealth.”
Dr. Lisa Walke, Chief of Geriatric Medicine, is seeing PMC patients
As a part of a growing collaboration between the Penn Memory Center and the Division of Geriatric Medicine, Lisa Walke, MD, will begin seeing former patients of Dr. Soumya Bollampally, who left at the end of September.
“We’re ecstatic to have my colleague Dr. Lisa Walke caring for our patients. She’s an esteemed geriatrician,” said PMC Co-Director Jason Karlawish, also a geriatrician. “Dr. Wolk and I are also excited about the opportunities to build collaborations between the Penn Memory Center and Division of Geriatric Medicine.”
Beginning November 27, Dr. Walke will begin caring for Penn Memory Center patients every other Wednesday from 8:30 a.m. to noon. She is not accepting new patients.
Biogen has announced it is bringing back an Alzheimer’s drug it previously deemed a failure and will now apply for regulatory approval from the Food and Drug Administration.
In a press release on October 22, 2019, the Boston-based biotech company reported that its drug aducanumab slowed cognitive decline in patients with early Alzheimer’s disease dementia and MCI due to Alzheimer’s disease. The reversal was based on new analyses of a larger dataset than was available after the trials were discontinued on March 21, 2019.
Biogen halted the trials based on the results of a “futility” analysis conducted by an independent data monitoring committee that concluded the drug was unlikely to yield a positive result.
The most recent review was conducted in consultation with the FDA, including data from patients that received the greatest exposure to a high dose of aducanumab between December 2018 and March 2019, according to STAT.
The review showed aducanumab to be “pharmacologically and clinically active” and that it reduced patients’ clinical decline based on the results of scores on the Clinical Dementia Rating (CDR). The CDR measure is performed by a clinician who interviews and examines the patient and a person who knows the patients well, such as a caregiver.
“While we are all happy that this may ultimately turn into a viable treatment, we should also be cautious until the research community and the FDA has an opportunity to review these data with the company,” said Dr. David Wolk, co-director of the Penn Memory Center and principal investigator for the aducanumab trials at Penn.
Dr. Wolk and his colleagues at the Penn Memory Center explained that they do not have full details of the review and the dataset, so it is difficult for them to know how convincing the data are and the future of this drug.
The results of Biogen’s analysis have not been subject to the peer-review process. The company plans to present the data at the Clinical Trials for Alzheimer’s Disease (CTAD) meeting in December 2019.
Biogen is currently working with the FDA to determine when participants in past studies can resume taking the drug, if they choose to, and the steps necessary for the FDA to review the data describing the drug’s risks and benefits. Biogen plans to file for approval in early 2020.
Dr. Jason Karlawish, co-director of the Penn Memory Center, explained, “These are early days and it remains to be seen how this drug will impact a disease that just 40 years ago was considered rare. As we and our colleagues learn more over the coming months, the Penn Memory Center will update our community.”
Penn Memory Scholar, Dr. Emily Largent, PhD, JD, RN, and Dr. Stephanie Morain PhD, MPH, of Baylor College of Medicine received the inaugural David Roscoe Award for an Early-Career Scholar’s Essay on Science, Ethics, and Society from the Hastings Center.
“Stephanie is a great friend and a great collaborator. We first met in grad school. Sharing this award with her feels particularly special given our history,” said Dr. Largent.
The award recognizes an essay on the social and ethical implications of advances in science and technology written that is accessible to a general audience. Their essay was chosen by a committee of Hastings Center Fellows from among 36 entries whose authors came from nine countries.
Their paper, “Recruitment and Trial-Finding Apps – Time for Rules of the Road,” which was published in the Journal of the National Cancer Institute in May, examines ethical issues that arise from a recent spur of trial recruitment apps such as PatientWing.
“While being excited about the promise these apps hold, we have to be mindful of potential ethical pitfalls,” she said.
In Dr. Largent and Dr. Morain’s research, they note trial finding apps have the potential to circumvent the traditionally clunky and slow methods of recruitment. However, user data sharing between app developers, misrepresentation in marketing materials, the cost of certain apps create an ethical minefield out of what is billed as a streamlined recruitment process.
In that streamlining, conflicts of interest arise. Novartis’ app, Clinical Trial Seek, has “Novartis trials,” as the default search option and users must actively select to view “All trials” as an alternative. The trials that prospective participants see may not really be the “best” match for them but the one that benefits trial sponsors or the app developer the most.
All the while, this burgeoning industry is moving at a pace too fast for regulators and human subjects protections bodies like the International Review Board (IRB) to reasonably accommodate.
“They disrupt traditional approaches to recruitment—where an investigator advertises a study to prospective participants—by introducing a third party into the mix. Our ethical and regulatory frameworks weren’t designed to accommodate that,” Dr. Largent said.
Dr. Largent and Dr. Morain suggest that awareness from app developers, research institutions, clinicians, regulators, and prospective research participants can stem the wave of issues that crop up on third-party apps.
The pair will be honored at the American Society for Bioethics and Humanities Conference in Pittsburgh, PA, on October 24-27, 2019.
The Journal of the National Cancer Institute has made the paper available for free for the next six months to celebrate the award. Read the full text here.
Even in retirement, Julius Hayes keeps himself busy, staying involved in his community and coaching high school baseball. But, year after year, he makes sure his schedule is clear for his annual ABC Study visit. A six-year participant, Hayes said he’s keeping the promise he made in 2013.
“It’s kind of like a social thing that I feel like I have to do to help in a small way,” he said.
Dear Caregivers,
We hear about the challenges you face every day as you place the needs of your loved one above your own. The Penn Memory Center wants to put you first with a free day of relaxation and self-care as a part of its 3rd annual Caregiver Retreat. The retreat will take place Saturday, November 2, 2019, at Ralston House Wellness Center from 9:00 am to 1:00 pm.
Treat yourself to a day of yoga, massages, meditation, creative art projects, and more. Lunch, coffee and snacks will be provided.
Parking is available on a first-come, first-served basis in the Ralston House parking lot (entrance on Ludlow Street), on Chestnut Street (metered parking) or in the parking garage at 34th and Ludlow streets.
You can RSVP to Alison Lynn at 215-360-0257 or alison.lynn@uphs.upenn.edu
Jordan Weiss, a PhD candidate in Demography and Sociology and a Penn Memory Center Scholar, received an award from the American Public Health Association (APHA) for his work examining recent trends in dementia and its risk factors.
The Laurence G. Branch Doctoral Student Research Award is an award which honors outstanding students for exceptional research during their training. Students must have completed a research project in areas of gerontology, aging and chronic illness and disability in adults, long-term care, or geriatrics.
Jordan will be recognized for his achievement during the APHA’s Aging and Public Health Section Awards Ceremony in November.