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Penn Memory Center co-director Jason Karlawish, MD, was a guest on the latest episode of the Dementia Matters podcast, hosted by Dr. Nathaniel Chin of the University of Wisconsin. The episode was a one-on-one conversation about the changing definition of Alzheimer’s disease.

Chin and Karlawish aimed to demystify some of the surrounding confusion around Alzheimer’s stemming from stigma, explain the interchangeable use of the disease with the broader “dementia,” and discuss the emerging research in biomarker screenings to disclose Alzheimer’s risk in individuals.

“The ‘brand’ of Alzheimer’s has been stretched to its limits,” Karlawish said. “We’ll use ‘Alzheimer’s’ to denote a specific disease, but also it’ll be the overarching term that captures the general problem.”

You can listen to the full episode here or subscribe to the Dementia Matters podcast on iTunes, Spotify, Podbean, Stitcher, or Google Play Music.

By Sharnita Midgett

Driver A is a Penn Memory Center patient who is referred to the Bryn Mawr Driver Rehab Program and fails the driver evaluation. He had an inkling that it was time to stop driving, and after listening to the concerns of family members, Driver A takes the keys out of his pocket and gives them to his family. “You’re right,” he says. “I’m going to stop driving now.” The family comes to a resolution on next steps.

Driver B is also referred to the Bryn Mawr Driver Rehab Program. She fails the test but does not want to stop driving. She is convinced her driving is fine, even after running several red lights, and argues with her family about needing to give up her keys. “I need to drive to take care of my family,” she says. “I don’t want to depend on other people.”

Tom Kalina, MS/OTR, CDRS, certified driving rehabilitation specialist for the Bryn Mawr Driver Rehab Program, sees each of these scenarios frequently when working with driving and dementia.

Kalina has seen cases where people were referred to the program because they were significantly lost by several states away. Sometimes it can take a couple days to find a person who has become lost. 

“These same people might come in for the evaluation and drive fairly well,” he said. 

By Sharnita Midgett

Carolyn L Whitaker walks into the Perelman Center for Advanced Medicine for her visit. As a returning participant of the Aging Brain Cohort Study (ABC), she follows the now-familiar routine: 

Melissa Kelley

1. check in with the research coordinator
2. review medical history
3. remove all metal 

She prepares to spend the next few hours in or preparing to go in two MRI scanners, the 3 Tesla (3T) and the 7 Tesla (7T). During the scan, she waits to hear the voice of her coordinator, Melissa Kelley, letting her know how much time she has left in the scanner. For her, this has become her favorite part of the study.

“It allows me to just lay down somewhere from 45 minutes to an hour and just be quiet. It’s like a gift,” she said.

Dr. Lauren McCollum (center) is a Cognitive and Behavioral Neurology Clinical Fellow in the Penn Memory Center.

By Leah Fein

Penn Memory Center (PMC) researchers found tau, a protein in the brain, may help distinguish Alzheimer’s disease from other forms of cognitive impairment.

Lauren McCollum, cognitive and behavioral neurology clinical fellow; Laura Wisse, PMC Scholar; and David Wolk, PMC co-director presented their poster titled “Cognitive Profiles in Amyloid-Positive MCI & Alzheimer’s Disease with and without Tau” at the American Academy for Neurology Annual Meeting.

By Danny Yarnall

The My Alzheimer’s Story Project, a seven-city tour gathering interviews with everyday Americans dealing with and researching Alzheimer’s, completed filming in Philadelphia this summer.

Documentary filmmakers Zach Jordan, Peter Schankowitz, and their crew partnered with Penn Memory Center and AARP, and traveled around the country conducting more than 80 interviews for the film. These interviews will also be used by University of Pennsylvania researchers to gain insight into patients and direct individual care.

Jordan’s previous film, Carpe Kilamanjaro (2016) documented his father’s and his own journey as his father battled with Alzheimer’s and served as inspiration for the MyAlzheimer’s Project.

Jordan, 42, sat down with AARP to discuss the takeaways and what he learned meeting with a diverse group of Alzheimer’s patients and their caregivers from Los Angeles to Philadelphia.

“Nobody has ever done anything like this before, so it’ll be very interesting to see how it pans out,” he told AARP.

By Danny Yarnall

PMC scholar Emily Largent, PhD, JD, RN, was a featured guest on the Good Law/Bad Law legal podcast hosted by University of Pennsylvania law school alumnus Aaron Freiwald. The episode’s topic was “aid in dying” — a set of laws that allow terminally-ill patients who meet specific requirements to take medication to end their own life. 

The issue has been thrust into the national spotlight as Maine and New Jersey are set to become the eighth and ninth states to allow aid in dying in the U.S., joining Oregon, Washington, Vermont, Montana, California, Colorado, and Hawaii, as well as the District of Columbia. Largent broke down the ethical and legal debates behind the issue as well as adding her own experience as a nurse and bioethicist in the discussion.

“On one hand, we think the clinicians should really set out the range of options for patients when they’re making decisions about a course of treatment,” Dr. Largent said on the podcast. “…At the same time, I think suggesting hastening death brings it back to being incompatible to the role of traditional medical ethics.”

You can listen to the full episode here.

Dr. Largent was also interviewed in a recent New York Times story on the subject. 

By Leah Fein

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.

While most doctors agree that regular exercise, adequate sleep, and a heart-healthy diet can lower the risk, this is no clear way to prevent Alzheimer’s. This drove Rudolph Tanzi, PhD, vice-chair of Neurology and director of the Genetics and Aging Research Unit at Massachusetts General Hospital, to ask, “Is it useful?” 

By Leah Fein and Danny Yarnall 

A recent study conducted by Penn Program on Precision Medicine for the Brain (P3MB) researcher Emily Largent, PhD, JD, RN, reveals new information on a hot-button debate in medical ethics.

The study, published in JAMA Neurology, looked at personal perceptions of access to aid-in-dying for Alzheimer’s disease and dementia patients. With new legislation in New Jersey and Maine, by October 2019 roughly 1 in 5 Americans will live in states where doctors can prescribe lethal medication to patients with capacity who have six months or less to live. 

P3MB researchers interviewed 50 older adults, most with family histories of Alzheimer’s and all with elevated levels of the Alzheimer’s disease biomarker amyloid. Amyloid confers “an increased but uncertain risk of developing Alzheimer’s disease,” Dr. Largent told The New York Times. The P3MB researchers found that about 1 in 5 of the individuals expressed interest in aid-in-dying if they became cognitively impaired or were a burden to their families, while another 15 percent described themselves as ambivalent. Two-thirds of the group would not choose aid-in-dying for themselves.  

By Leah Fein

One in 10, or about 5.8 million, Americans are living with Alzheimer’s disease. This number is predicted to rise to about 14 million by 2050. In Pennsylvania alone, the percentage of people living with Alzheimer’s is expected to increase by 14.3 percent in the next five years, according to the 2019 Alzheimer’s Association Facts and Figures.

By Danny Yarnall

The very definition of health is up for debate.

PMC scholar Cara Kiernan Fallon and PMC Co-Director Jason Karlawish recently authored editorials for for the American Public Health Journal  and STAT that support an update to the definition of human health made seven decades ago at the World Health Organization’s (WHO) inception. 

“We thought about the ways current public health initiatives for ‘healthy aging’ reflect a contradiction in terms, and then we turned to the definition of health,” said Fallon, who is also a Bioethics Fellow at UPenn.

The WHO currently describes health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” The pair argues as medical science prolongs lifespan and improves quality of life while living with the disease, “healthy” has taken on a new meaning. They recommend the definition be expanded to include noncommunicable disease and special considerations for the elderly, as more than two-thirds of adults 65 or older live with more than two diseases.