An Alzheimer's Disease Research Center
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.
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.
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
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
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.
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.
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.