By Danny Yarnall

Nancy Childs woke up on March 21, 2019, to upsetting news for her and her husband, Mike. The Alzheimer’s study sponsored by Biogen and Eisai for their drug aducanumab had been pulled. And the rug had been pulled out from under Mike, Nancy, and many other study participants’ feet. This was the first they heard of the study’s closure, and Penn Memory Center staff were racing to reach out to other participants to provide some guidance.

This haphazard system of communication is addressed by PMC Scholar Emily Largent, JD, PhD, RN; and PMC Co-Director Jason Karlawish, MD, in a new paper out in JAMA Neurology. The paper, “Rescuing Research Participants After An Alzheimer’s Trial Stops Early—Sending Out an SOS,” outlines current issues in participant notification following large-scale drug trials closure and identifies ways for all stakeholders to improve going forward.

Credit: @domsisti/Twitter

By Danny Yarnall

Neurology Today selected research from the Penn Program on Precision Medicine for the Brain as a part of an annual round-up of the year’s most important advancements in the field of neurology. 

The work — by PMC Scholar Emily Largent, PhD, JD, RN; PMC Co-Director Jason Karlawish, MD; and PMC Research Program Manager Kristin Harkins, MPH — studied attitudes of gene and biomarker disclosure study participants on physician-assisted-death (PAD). This caught the eye of Neurology Today’s experts for addressing an “absolutely critical” need to understand how genetic and amyloid biomarker disclosure affects patients’ plans for the future.

By Sharnita Midgett

On an early December day, Alan Russell, 71, sat down to write. Typically, he enjoys writing about genealogy and history, but on that December day he penned “Giving Back – Medical Studies,” documenting his research story and discussing the importance of using his time to give back.

“If you have the opportunity to participate in a medical study of any kind, I recommend that you do so,” Russell said. “You may not benefit yourself, but others will.”

Time Out facilitates meaningful, in-home engagement through intergenerational companionship by connecting older adults with PMC-trained college students. This includes conversation, reading, music, and may also include light meal preparation, laundry, and light grocery shopping. It does not include personal care — such as bathing, dressing, feeding, or toileting — nor administering medications or therapies. While private respite care may cost more than $20 an hour, Time Out care providers will be available for $8.50 an hour, up to 10 hours per week. Penn Memory Center families who would like to sign up or learn more should contact Meg Kalafsky, Time Out Program Coordinator, at (267) 624-4282 or megan.kalafsky@pennmedicine.upenn.edu.

By Danny Yarnall

Hazel Souder rises for an early trip to the gym before her husband Louis is awake. These quiet moments can be precious for her, the quiet moments when she’s not just a wife or a caregiver to Louis, who has Alzheimer’s. All that’s asked of her in these moments is to just be Hazel.

“You have to continue to define yourself in every stage of life,” said Hazel, who will be 80 next December.

Thanks to Time Out, a collaboration between PMC and Temple University that trains students as respite workers and offers an affordable alternative to agency care, Hazel can continue to define herself and take on all the other responsibilities she has to Louis as a wife and caregiver.

Cognitive Comedy, a free improv comedy workshop for people with cognitive impairment and their loved ones, is back at Penn Memory Center. The class will continue this year without Leah Lawler, who left to pursue graduate studies at New York University, and is now under the guidance of Jean Haskell, who has taught theatre and performance classes for Temple University’s Osher Lifelong Learning Institute (OLLI). Improv actors-to-be can let it all hang out at Cognitive Comedy sessions each at 4 p.m. every other Tuesday between March 24 and June 30 at Ralston House, Room 241, 3615 Chestnut Street. To register, email jean.haskell205@gmail.com.

By Sharnita Midgett

Looking over the top of her seafood menu, Rosemary Browne wondered what would happen if her mother tried to order alone.

“Mom,” she asked, “do you want a crab cake?” 

The questions always sought a yes-or-no answer. Open-ended questions simply drew attention to the fact that Carolyn, her mother, could no longer order off the menu by herself. 

Ever since Carolyn’s diagnosis of Alzheimer’s disease, how she interacted with the public had started to change, and it made Browne picture the struggle of her mother trying to order without knowing her options.

Browne and family members first noticed Carolyn’s memory problems in familiar places, like at her favorite restaurants and traveling to the Jersey Shore. At the same time, Browne believes, these troubles were also noticed by Carolyn’s employers as she approached 80 years of age.

“They were letting people go, and that was their opportunity to let her go,” she said.

Karolina Lempert, PhD

By Danny Yarnall

Karolina Lempert would like to know whom you trust.

She calls it “studying the neuroeconomics of long-term and short-term decision making in adults with cognitive decline.” Essentially, she is looking at how memory impacts judgment, part of new research she presented to Penn Memory Center (PMC) colleagues.

Lempert, PhD, talks a lot about economics. For her, the subject is intertwined with the realities of daily living whether we like it or not, but with one tweak in language to describe neuroeconomics — a combination of psychology, neuroscience, and economics.

“I like to use models and ideas from economics and see how people actually behave, which is a little different from classical economics, which is about how people should behave,” Dr. Lempert said. “We make decisions with our brain, so understanding how it works helps us understand more about our behavior.”

The Penn Memory Center hosted a Book Club meeting January 9 to discuss The Soul of Care: The Moral Education of a Husband and a Doctor, written by Harvard anthropologist and writer Arthur Kleinman, MD.

PMC Co-Director Jason Karlawish, MD, and PMC Scholar Emily Largent, RN, JD, PhD were joined by PMC and Penn Medicine faculty and staff, as well as caregivers of PMC patients. Discussion centered around the personal narrative of Kleinman’s caregiving experience in the book and drawing on the writings to apply to their own lives and careers in medicine.

The book club was a companion to Arthur Kleinman’s panel discussion and plenary lecture, “Caregiving As Moral Experience,” on Penn’s campus this past fall.

At Penn Memory Center, the excitement of a new year brings with it the pride of distributing a new print issue of InSight magazine. This year’s issue is the most comprehensive to date. 

Our cover story is of Julius Hayes, a six-year ABC Study participant whose commitment to research is borne out of a sense of duty towards contributing to the progression of Alzheimer’s treatments. Julius also highlights the importance of including more African-American men in studies, a group severely underrepresented in research. 

Readers will also find updates and information on the Memory Center’s ongoing research, our coverage of Biogen’s shocking aducanamab announcement and patient perspectives on the return of the drug trials, as well as mixture of how science and art blend together for one researcher, and one man’s photographic journey through his father’s life with dementia.

Anyone interested in receiving a free print copy edition of InSight should email terrence.casey@pennmedicine.upenn.edu 

Click here to see previous editions of InSight: pennmemorycenter.org/insight 

By Danny Yarnall

The world of Alzheimer’s research has been flooded with news and speculation surrounding Biogen’s stunning announcement this fall that it would seek FDA approval for its Alzheimer’s drug aducanumab after closing previous studies in March 2019. Some clarity was brought at a Clinical Trials for Alzheimer’s Disease meeting this past December where Biogen released the data behind its reversal on the drug and announced they would reopen aducanumab studies. Still many questions remain as FDA approval process inches closer.

PMC Co-Director Jason Karlawish, MD, wrote twice for STAT News, outlining the significance of this new information and how aducanumab, with its risks, fits into a much larger picture of Alzheimer’s care and management.

“It won’t end Alzheimer’s because it cures the disease. It doesn’t do that. Aducanumab appears to slow, but does not stop, and certainly does not reverse, patients’ cognitive and functional declines…As long as the benefits are judged to outweigh the risks, aducanumab won’t just treat individuals with Alzheimer’s disease. It will treat our Alzheimer’s culture,” Dr. Karlawish wrote.

By Danny Yarnall

The University of Pennsylvania’s partnership with the Centers for Disease Control and Prevention (CDC) promoted Alzheimer’s education and combatted stigma, according to a recent report published by the CDC. The program completed in 2019.

The reports from the Healthy Brain Research Network, released November 3, are summaries of the completed work of the six academic institutions in the network, including the work done by Penn Memory Center’s Penn Program on Precision Medicine for the Brain (P3MB) team. 

By Danny Yarnall

Congressional leaders agreed to a $350 million increase in Alzheimer’s and dementia research funding through the National Institutes of Health (NIH) as a part of a larger NIH budget increase for the 2020 fiscal year.

The agreement broke a three-month deadlock in budget negotiations on Capitol Hill.

The additional funds pushes NIH spending on Alzheimer’s to $2.8 billion, six times the amount originally allocated when the National Alzheimer’s Project Act (NAPA) was passed in 2011. 

On the whole, the NIH budget increased by $2.6 billion from last year and was among many other science and research institutions to enjoy similar bumps in spending. This comes after a proposed budget released by the White House in March showed over $12 billion (14%) in cuts to all research expenditures.

Penn Memory Center Scholar Emily Largent, JD, PhD, RN, was recently named the Emanuel & Robert Hart Assistant Professorship of Medical Ethics and Health Policy.

“It’s an honor to be the new Emanuel & Robert Hart Assistant Professor of Medical Ethics and Health Policy,” Dr. Largent said. “I’ve had the pleasure of meeting Robert Hart and his wife, Ineza, on several occasions and am so grateful for their support.” 

By Sharnita Midgett

On a November Thursday morning, Nancy Fuhrman reported to the Perelman Center for Advanced Medicine for a full shift of work.

But Fuhrman is not employed by Penn Medicine; she is a participant in the Aging Brain Cohort study who scheduled a year’s worth of substudies into a single day. 

Penn Memory Center neurologist Roy Hamilton, MD, MS will be taking a leave from his PMC clinical duties from January until June as he launches a new center at the University of Pennsylvania devoted to stimulating the human brain.

The new Brain Stimulation, Translation, Innovation, and Modulation Center (brainSTIM Center) has been a goal Dr. Hamilton has been working towards in the two decades since he started working in the field of neuromodulation, he said.

“I’m humbled and deeply inspired,” said Dr. Hamilton of the opportunity to start the center. “I’m truly excited to take a leading role in these efforts.”

By Danny Yarnall

Penn Memory Center Co-Director Dr. Jason Karlawish, MD, recently testified on the state of Alzheimer’s and dementia research and care in Washington, D.C. before the Senate Finance subcommittee on health care.

Dr. Karlawish spoke about the progress made in understanding Alzheimer’s disease in the past four decades, from a disease surrounded in confusion that developed into a “gothic horror story” to a disease that can be diagnosed non-invasively and understood by families and physicians alike. He was joined by medical professionals, researchers, and caregivers presenting the barriers and difficulties in Alzheimer’s care today.

“I am sad however that there are still too many persons living with dementia and their families who are telling the same stories told some 40 years ago,” he said in his remarks to subcommittee chair Patrick Toomey (R – PA) and ranking member Debbie Stabenow (D – MI), who led the hearing. The subcommittee on health care focuses on Medicare and Medicaid spending and health programs financed by a specific tax or trust fund. 

By Danny Yarnall

New research shows a unique strain on a generation of Americans caring for both adult parents and children in their home as they start their prime earning years.

The report comes from the National Alliance for Caregiving (NAC) in partnership with Caring Across Generations, dubbing the group of 11 million Americans “the “sandwich” generation of caregivers for their responsibilities juggling work, parenting, and caregiving, adding often unsupported financial and emotional strain.

Penn Memory Center (PMC) Executive Director Felicia Greenfield appeared on NBC10 recently for an interview with PMC patient and former Temple University professor Jeff Draine.

The two discussed his early-onset Alzheimer’s disease and the importance of positivity after receiving a diagnosis.

“Improving a person’s quality of life is the best thing we can do right now, not only for the person with the diagnosis but also for their family members,” Greenfield said.

All adults, regardless of cognitive status, should be a brain-healthy diet (“the more colors on your plate, the better,” Greenfield said) and should seek an evaluation if memory problems go beyond ordinary.

Click here to watch the complete interview.

By Jason Karlawish

Bill Lyon, the romantic, finally found his sunset.

It was the fall of 2017 when I went out to visit Bill at his home, not as “the man in the white coat,” as I’d been dubbed in his columns, but as an interviewer looking to understand what made him so fearless.

Fearless, not just to accept the Alzheimer’s diagnosis I had given him four years earlier, but to shout it out from the tallest tower he could scale.

Fearless, not just to live with the loss of his cognitive abilities, but to put them on display to a world that had so treasured his mind for decades.

Fearless, to celebrate the circle of life and acknowledge his place in it.

“You pass along the baton, and you hope you’re leaving behind you somebody who can pick up and follow,” he told me that day.

By Danny Yarnall

A contest from the National Institute on Aging (NIA) has pushed app creators to focus on ways technology can improve the care and management of Alzheimer’s patients.

The Eureka Prize from the NIA awarded three teams on their efforts to create new apps and software designed to improve dementia care and care coordination. The contest, launched in 2018 to drive innovation in the dementia care space, fielded 33 applicants with submissions ranging from mobile apps to software platforms to pick the three winners to share $400,000 in prize money.

By Sharnita Midgett

Ken Ford, 93, travels an hour from his home to the Perelman Center for Advanced Medicine. He meets annually with his ABC coordinators and clinicians, saying “yes” to MRIs, PET scans and lumbar punctures. He has done this for 13 years, showing up for his appointments and and rescheduling when conflicts arise. Why? Ford is motivated, not by a family history of dementia, but a pure love for science. 

“Anything I can do that will contribute to research, I’m happy to do, as long as it’s not too intrusive or too time consuming for me,” Ford said. “I just do my duty. Anything for science.”

Credit: reneechenaultfattah.com

A new documentary from Renee Chenault-Fattah exploring the struggles of families affected by Alzheimer’s disease will have its television premiere 7 p.m. Nov. 30 on NBC10.

Chenault-Fattah, a former anchor for NBC10, told Philadelphia Magazine she began to see her friends either become caregivers or start to experience cognitive issues themselves shortly after turning 60. Then she came across an article detailing the disproportionate toll the disease takes on the African American and Hispanic communities. African-Americans are twice as likely as white people to develop Alzheimer’s disease or other dementias, while Hispanics are 1.5 times as likely.

“That spoke to me and said this is the story you need to do,” she said in the interview.

By Danny Yarnall

Medicare’s open-enrollment period for 2020 is already a month underway and many older Americans are weighing plans ahead of the December 7 deadline. But outside of normal year-to-year increases in out-of-pocket costs and premiums is a staggering difference for Medicare beneficiaries with dementia.

Last April, Health Services Research published a study that used 20 years of Medicare expenditures to estimate that Medicare spends nearly $16,000 more on patients with dementia than other Medicare beneficiaries.  

By Danny Yarnall

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 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.

PMC’s Dr. Laura Wisse is flanked by Alzheimer’s Association Delaware Valley Chapter Executive Director Kristina Fransel and Dr. Rebecca Edelmayer, Alzheimer’s Association Director of Scientific Engagement after receiving a research grant award.

By Danny Yarnall

Former Penn Memory Center Scholar Laura Wisse, PhD, recently left the University of Pennsylvania to pursue an assistant professorship at Lund University in Sweden.

Dr. Wisse first came to the Penn Memory Center in 2014 for a post-doctoral fellowship after earning a PhD in Neuroscience and MSc in Epidemiology from Utrecht University in the Netherlands in 2014 and an MSc in Psychology from Leiden University in the Netherlands in 2010.

She brought to Philadelphia a keen interest in aging brains and the mind, sparked from her time working in a nursing home while in high school. Part of her duties was to help out with a daycare program for the people at the home with cognitive decline and dementia. Her hours were spent feeding, playing games and music with residents, and sometimes even painting their nails.

Penn Memory Center Scholar Shana Stites, PsyD, MA, MS was a featured guest on a recent episode of Dementia Matters, hosted by Dr. Nathaniel Chin of the University of Wisconsin. On the show, Dr. Stites discussed her work with the stigma surrounding Alzheimer’s disease and the role disclosure can have on perpetuating or fighting it.

Stigma can come from both internal and external sources, she explained, based on our perceptions of how a person with Alzheimer’s disease is supposed to act, what they’re supposed to look like, and how those perceptions meet with reality.

In Dr. Stites’ work on the subject, she found that people who believed more strongly that Alzheimer’s disease is a mental illness tended to “over-interpret” symptoms presented to them in a fictional vignette, believing the symptoms to be worse than those who did not associate Alzheimer’s disease with mental illness as strongly.

“If we have a strong belief Alzheimer’s disease is a mental illness…it could impact our willingness or openness to learn a gene or biomarker result,” Dr. Stites said.

You can listen to the full episode here.

This free program is for PMC patients experiencing memory change, or for those with mild cognitive impairment or early-stage dementia. Throughout a series of classes, participants will engage in collaborative and creative musical experiences, with a particular focus on creating new music. Participants will also be treated to musical performances by Curtis Institute students, including a concert at the end of the program! Beginners welcome.

Session 1 Schedule:

2 p.m. to 4 p.m. Tuesday, October 8, 2019
2 p.m. to 4 p.m. Tuesday, October 15, 2019
2 p.m. to 4 p.m. Tuesday, October 22, 2019
2 p.m. to 4 p.m. Tuesday, October 29, 2019
2 p.m. to 4 p.m. Tuesday, November 5, 2019
2 p.m. to 4 p.m. Tuesday, November 12, 2019
2 p.m. to 4 p.m. Tuesday, November 19, 2019

Session 2 Schedule:

2 p.m. to 4 p.m. Tuesday, January 21, 2020
2 p.m. to 4 p.m. Tuesday, January 28, 2020
2 p.m. to 4 p.m. Tuesday, February 4, 2020
2 p.m. to 4 p.m. Tuesday, February 11, 2020
2 p.m. to 4 p.m. Tuesday, February 18, 2020
2 p.m. to 4 p.m. Tuesday, February 25, 2020
2 p.m. to 4 p.m. Tuesday, March 3, 2020
2 p.m. to 4 p.m. Tuesday, March 10, 2020

Where:
The Curtis Institute of Music
1616 Locust Street, Philadelphia, PA
Lenfest Hall, Room LH314

RSVP by contacting:
Alexandra Acaba Barrocal at alexandra.acaba@pennmedicine.upenn.edu

By Danny Yarnall

It’s said the best careers are found when following one’s passion. Rarely does someone get to follow two passions at once.

As a postdoctoral fellow at the University of Pennsylvania, Darina Petrovsky PhD, RN, has taken her love and a lifelong passion for music and combined it with a background in nursing science to conduct studies specifically looking at music’s effects on cognition in older adults, including a study published this year in Psychology of Music on musical ability in adults with mild cognitive impairment (MCI).

She became involved in music growing up in Russia under the guidance of her grandmother, who was never formally trained and survived World War II in St. Petersburg, then Leningrad, as a child.

“She was always working around musicians and had a good sense of what good music is,” Dr. Petrovsky said. “She never had a lot of resources. During World War II there was a seige. You couldn’t get food in and out, but they still had concerts so they could still enjoy music.”

At age 7, Dr. Petrovsky auditioned for an after-school music program for formal training. She attended the program until she was 14, learning music theory, choir performance, and a variety of instruments. She brought this love with her when she moved to the U.S. at 14 and began exploring other outlets for her talent. She picked up a side gig in high school playing solo piano or accompanying by other singers at nursing homes, which brought to her attention the benefits of music in this audience.”

“It was a great way for me to engage with this population. They really enjoyed our performances…after that, I always wanted to work with older adults,” she said.

Dr. Petrovsky played piano all through high school and as the focus of her Bachelor’s in Musical Arts at University of Michigan. She switched tracks in graduate school, earning her Master’s in Nursing at Case Western Reserve University before achieving her PhD in nursing at UPenn in 2017. 

Most of Dr. Petrovsky’s work has focused on the intersection of music and brain health and their ability to impact one another. In one study, she interviewed adult choir performers at Mercy LIFE in West Philadelphia, a program of all-inclusive care for the elderly, to find out what benefits they believe singing has on them at this stage in their lives.

Darina Petrovsky, MN, PhD, leads the Penn Memory Center choir at the Research Partner Thank You Breakfast.

Her recent study with the Penn Memory Center examined where adults with MCI rank their “musical engagement” — how often they listen, play, or go out to see music — and what other musical abilities and interests they had. Dr. Petrosky also wanted to see if there was a  correlation between this musical ability and scores on cognitive tests. What she found was somewhat surprising and not in line with the researchers’ hypothesis gong into the study.

While other studies presented some of the benefits music education had on cognitive abilities in older adults, Dr. Petrovsky’s team found that there was not much correlation between her group’s test scores and their musical engagement.

“This means two things,” she said, “a) the scale that we used may not be very good or b) musical ability and the ability to think about your engagement engages a different part of the brain.”

Currently, she is conducting a study on how listening to music at bedtime affects sleep in older adults with dementia. 

Dr. Petrovsky has also led the Penn Memory Center Choir for Older Adults and has been a performer at Penn Memory Center’s Memory Cafe at Christ Church Neighborhood House in Old City, drawing on her musical education and love of piano to continue meshing her two passions.

Fans of Penn Memory Center’s popular Memory Café now have an additional option in University City.

Daylight Café will debut 10 a.m. to 11:30 a.m. Wednesday, September 25 at the Drexel University Community Wellness HUB. The café is free and open to any individual with cognitive impairment and their care partner. Light refreshments will be provided.

The Daylight Cafe will be regularly scheduled on the fourth Wednesday of every month. For more details, email daylightcafe@drexel.edu or call 215-359-5627.

PMC hosts its own free Memory Café in Christ Church Neighborhood House in Old City. The next café is 10:30 a.m. to noon on September 27 and will include performances by the Curtis Institute of Music. Please RSVP to Alison Lynn at 215-360-0257 or alison.lynn@uphs.upenn.edu. All 2019 dates are posted here.

By Sharnita Midgett

How does a clinician decide when to listen to the decisions of their patients or override those decisions for their patients’ safety? This is a question of decision-making capacity, which is impacted by several factors and is sometimes hard to determine. 

Lecturer in the Department of Psychiatry at Yale University and lead writer Rocksheng Zhong, MD, MHS, Assistant Professor in the Department of Medical Ethics and Health Policy Dominic Sisti, PhD, and PMC Co-Director Jason Karlawish, MD, co-authored an article discussing the pragmatic approach to assessing decision-making capacity. 

The National Institute on Aging (NIA) has awarded a five-year grant expected to total $53.4 million to Brown University and Boston-based Hebrew SeniorLife (HSL) to lead a nationwide effort to improve healthcare and quality of life for people living with Alzheimer’s disease and related dementias, as well as their caregivers. 

Together, the institutions will create a massive collaborative research incubator to develop trials aimed at evaluating interventions for Alzheimer’s disease or Alzheimer’s-related dementia (AD/ADRD). 

The Alzheimer’s Association estimates that while more than 5 million Americans currently live with Alzheimer’s or a related dementia, the number is expected to double by 2050. The current annual cost of dementia care exceeds $226 million a year in the U.S. alone. 

“It’s time for Alzheimer’s and other dementias to receive the same level of research focus and investment as cancer,” said Louis Woolf, HSL president and CEO. “We’re proud to collaborate with Brown University to address this national epidemic that affects not only patients, but their families and caregivers as well.” 

A Night Out For Alzheimer’s Disease

September 26th | 6-8 PM
Prime Rib | 1701 Locust St.

Tickets and Information

At the Penn Memory Center, we’re leading the fields of Alzheimer’s disease care, research, education, and discovery…

…and we need your help.

Join us September 26th as we celebrate our resilient patients and caregivers and support the research, clinical care, caregiver support, and training initiatives that define the Penn Memory Center. Enjoy a fun evening that will include drinks, appetizers, and creative ways to support our work. Raffle and auction prizes include Philadelphia Eagles tickets, whiskey tastings, restaurant gift cards, and even a beach vacation!

Without philanthropic support, PMC could not sustain the infrastructure we need to provide high-quality clinical care, and our ability to secure research funding would be hindered. The dollars we receive from philanthropy and research allow us to provide the premier care not found in other outpatient practices.

Made Possible Through Philanthropy:

• Longer visits
• Psychometric testing and testers
• Training of the next generation of memory care specialists, neuropsychologists, and geriatric social workers
• Counselors and caregiver support
• Memory Cafés and other special programs
• PET Scans, including amyloid and tau
• 3T and 7T MRI scans
• The annual Research Partner Thank You Luncheon
• InSight Magazine

If you are unable to attend this event but still want to support our efforts, please visit www.pennmemorycenter.org/gifts.

Penn Memory Center Geriatrician Soumya Bollampally, DO, will be leaving PMC this September after four years. 

Dr. Bollampally earned her undergraduate degree in Health and Societies from the University of Pennsylvania, received her medical degree at the Rowan School of Osteopathic Medicine and completed her Internal Medicine Residency and Chief Residency year at Pennsylvania Hospital in Philadelphia. She completed her Geriatrics Fellowship at the University of Pennsylvania and became an Instructor in the Division of Geriatric Medicine in 2015 and Assistant Professor in 2016. 

Dr. Bollampally’s work and research focused much on home-based care for elderly adults. She published two abstracts in 2015 on how home-based care reduces the cost for eligible adults under Medicare’s Independence-at-Home criteria. Dr. Bollampally said she would like to thank everyone at PMC for an incredible experience and invaluable knowledge that will guide her through the rest of her career.

Virginia M.Y. Lee, PhD, the John H. Ware 3^rd Professor in Alzheimer’s Research in the Department of Pathology and Laboratory Medicine and director of the Center for Neurodegenerative Disease Research at the University of Pennsylvania, will receive the Breakthrough Prize in Life Sciences. The award recognizes Lee’s work in understanding how different forms of misfolded proteins can move from cell to cell and lead to disease progression in Alzheimer’s disease, Parkinson’s disease, and other dementias and movement disorders.

“It is an honor to receive such a prestigious award, and this funding will help us as we continue to push for a greater understanding of these diseases that can ultimately help us find ways to help millions of these patients,” Lee said.

By Danny Yarnall

Tangles in Time, a new production from Theater of Witness that features performances from people with dementia, care partners, and health-care professionals, will debut at Philadelphia Episcopal Cathedral on September 13-14. (Details)

The project uses live theater along with original film and music to communicate the participants’ true stories of illness, caring, love, and loss.

By Leah Fein and Danny Yarnall

Simple direct-to-consumer genetic tests, like 23andMe, have made it easier than ever for people to learn their APOE genotype status. But experts disagree on the value of this information. 

While everyone has two copies of the APOE gene, only the e4 variant (known as APOE4) increases one’s risk of developing Alzheimer’s disease. About 20 percent of the population has one or two copies of the e4 variant.

Penn Memory Center (PMC) researchers have studied the responses of more than 3,000 people who have learned their APOE genotype result.  Penn experts say the value is something the individual has to assess.

“So far there is no significant uptick in psychological harm or acute psychological catastrophic reactions,” PMC Co-Director Jason Karlawish, MD, told the Wall Street Journal in a recent article on the topic. Still, “unless you have very particular reason you want to know your genetic risk, it’s not a very valuable test,” Dr. Karlawish said. 

Credit: Creative Commons, Mike MacKenzie

By Steve Graff

Editor’s Note: This article was originally published by Penn Medicine News.

When the biotech company Biogen stopped a clinical trial investigating a drug known as aducanumab to slow Alzheimer’s, disappointment swept through the neurology community. “This one hurts,” one neurologist told CNN in March. “Alzheimer’s patients just can’t get a break.” The drug, which reduces amyloid, a nefarious protein believed to drive the disease, had slowed cognitive decline in animals. But studies in humans showed the intervention was too late. Damage—likely from the early buildup of the protein—had already been done, and patients’ outcomes weren’t improving as the trial progressed. Other promising drugs remain in the pipeline, but that trial—which included several Penn patients—was yet another reminder of the staggering complexity of Alzheimer’s.

“This a disease that can start up to 20 years before any symptoms become obvious,” said Yong Fan, PhD, an assistant professor of Radiology in the Center for Biomedical Imaging Computing and Analytics at Penn. “So if you could predict the disease earlier, you would have a better chance to cure it with drugs.”

Fortunately, the field of detection has made significant strides over the years to help get there. Researchers are consistently finding better ways to track rogue proteins and predict the progression of cognitive decline with biomarkers, neuroimaging, and more recently and arguably most impressively, the rapidly advancing technology touching nearly every part of medicine today: artificial intelligence.