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By Meghan McCarthy

Editor’s Note: In light of the 2024 PennAITech Symposium, this article is a part of ongoing coverage on the intersection of technology and dementia.

When Adrienne Russin’s husband began showing signs of dementia, she was at a loss. Living in a rural area of central Pennsylvania, Adrienne didn’t have access to resources to support her husband or herself.

Unaware of the Penn Memory Center (PMC) or similar institutions, the family struggled without adequate support as his condition worsened six years ago.

“Roughly 20 years ago, I was the primary caregiver for my mother, who had end-stage cancer in the Philadelphia region,” Adrienne said. “She received wonderful, absolutely brilliant care. Fast forward to our experience in central Pennsylvania, and it’s disheartening to see the stark contrast in support, research, and treatments for different illnesses.”

After her husband was formally diagnosed with frontotemporal dementia (FTD), Adrienne took it upon herself to research resources.

She then found the world of virtual caregiver support groups.

Now, she belongs to seven.

By Meghan McCarthy

Editor’s note: Editor’s Note: In light of the 2024 PennAITech Symposium, this article is a part of ongoing coverage on the intersection of technology and dementia. Names have been changed to protect PMC patient privacy. We sincerely thank the family involved in sharing their story with our community.

Fourteen years ago, Eleanor left her house with a simple afternoon stroll in mind. After the passing of her beloved husband, walks around her gated community were a boost to her daily routine.

Hours later, her daughter, Molly, called Eleanor’s home phone and couldn’t reach her.

“Because she was my father’s caregiver, she always answered her cell phone,” explained Molly. “When I called and asked where she was, she said ‘Oh, I’m very close to home, I’m walking home now.’”

Molly knew something was off. It was pitch-black outside and with the recent snowfall, the scenery looked different. Additionally, Eleanor is not fluent in English, creating a language barrier if she needed help.

Anxiety ensued.

Molly navigated through the roads of Eleanor’s gated community but found no trace of her. Molly even reached out to the community’s security center, but to no avail. With Eleanor still missing, Molly was left with no choice but to call 911.

“When the police found her, she was very far away and absolutely out of her gated community,” said Molly. “She was walking on a street with many cars coming and going. She was still walking and completely believing that she was walking home.”

Faced by uncertainty about her mother’s cognitive condition, Molly was certain she never wanted to feel that level of panic again. In the following years, Eleanor was diagnosed by Jason Karlawish, MD, co-director of the Penn Memory Center (PMC), with Alzheimer’s disease (AD).

“It took many years for me to think something else was going on besides my mom just being older,” said Molly. “I looked to see if there were resources about Alzheimer’s and technology, and there was nothing.”

After her mother got lost, Molly called her phone service provider and asked if there was a way to track Eleanor’s cell phone. In 2010, this was no easy feat as live location sharing and tracking apps had not been developed yet.

The phone service provider offered the Secure Family Today program, which allowed Molly to track Eleanor’s flip phone. Without requiring her mother to even download an app, Molly relied on the technology to ensure her mother’s safety while living independently.

“It was like magic,” said Molly. “The service cost $9 a month, and what a relief that was.”

With this newfound peace of mind, Molly slowly incorporated more technological solutions into her mother’s caregiving routine.

Last week, the Penn Memory Center celebrated the kick-off of the Arts on the Mind festival, a series of events highlighting the profound connection between the creative arts and the human mind. This collaboration unites the Philadelphia Chamber Music Society, Penn Memory Center, The Franklin Institute, Philadelphia Film Society, the Free Library, and ARTZ Philadelphia, bringing events to iconic venues. Together, artists, educators, physicians, and neuroscientists connect to create, observe, and discuss art in ways that illuminate its vital role in the development and maintenance of our minds, particularly as we age.

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On March 13, the festival partnered with the Franklin Institute for a special Conversation Lab on Music, Memory and Your Mind. This interactive session featured Chief Bioscientist Jayatri Das, PhD, TimeSlips founder and MacArthur Fellow Anne Basting, PhD, and PMC Co-Director Jason Karlawish. Participants were treated to a unique blend of art and science, starting with a tour of the Your Brain exhibit and a performance by cellist Zachary Mowitz.

Brain scans show clearance of amyloid plaques, shown in red, in two patients, A and B, who received donanemab, compared to higher levels of amyloid in a patient who received placebo (bottom) in Eli Lilly’s trial.

The Food and Drug Administration (FDA) has postponed its decision on the Alzheimer’s drug donanemab, which was expected by the end of March. Instead, the FDA will ask an independent panel of experts to review questions about the drug. Eli Lilly and Company, the drug’s manufacturer, confirmed this development.

The FDA’s request for an advisory committee follows a longer than expected wait for a decision that was expected by the end of 2023 and then sometime in the first quarter of 2024.

The published and presented data on donanemab describe a drug that’s much like lecanemab, an effective treatment for persons with mild cognitive impairment or mild-stage dementia, which is dispensed by infusion every two weeks. Donanemab was attractive to some patients because it required a monthly infusion.

“This is a surprise, but it’s not a cause for worry; the data show the drug’s effective,” said Penn Memory Center Co-Director Jason Karlawish, MD. “Most likely, FDA will ask the committee to weigh in on how to translate the study’s design into the FDA guidance for how to prescribe it.”

He noted the study of donanemab enrolled persons with certain levels of tau protein in their brain, and that the drug was discontinued after amyloid was cleared. Tau is one of the pathological hallmarks of Alzheimer’s disease.

“Neither of these design features is part of how we prescribe lecanemab. Should they be for donanemab? And if so, why not lecanemab? Those are great questions for an advisory committee to weigh in on,” Dr. Karlawish said.

The PMC will provide updates on the timing of the hearing and its outcomes.

Read more in The New York Times.

By Judy George, MedPage Today

The 2024 ballot may have the oldest pairing of presidential candidates, with President Joe Biden at age 81 and former President Donald Trump at age 77. Each candidate has publicly shown moments of forgetfulness in recent weeks, but what that means isn’t clear.

The failure to remember a specific event or date may or may not point to cognitive problems, maintains geriatrician Jason Karlawish, MD, co-director of the Penn Memory Center at the University of Pennsylvania in Philadelphia, and author of 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 diagnosis of cognitive impairment requires a careful assessment by a trained clinician, Karlawish says. In an exclusive interview with MedPage Today, he discusses the distinction between memory and forgetfulness, how clinicians determine cognitive impairment, and how popular media reports can muddy the picture.

For a translated version of this article, please click here.

Editor’s note: Andrew Beltran is no longer in this role. For inquiries about PMC’s outreach efforts, please contact Terrence Casey.

By Meghan McCarthy 

As the Penn Memory Center (PMC) continues to develop new research opportunities for Latinos in Philadelphia, it has a new coordinator dedicated to these efforts: Andrew Beltran. 

Latinos are developing Alzheimer’s disease and related dementias (ADRD) at a rate higher than any other racial or ethnic group in the United States, according to the Centers for Disease Control and Prevention. And yet they are frequently underrepresented in research.  

Starting with the hire of Beltran, PMC is building relationships with Latino communities in Philadelphia, conducting health needs assessments, holding health education events, and evaluating the accessibility of research, clinical care, and training.  

“Equitable dementia care begins with equitable research,” said Terrence Casey, director of communications and outreach. “And equitable research begins with making our neighbors in Philadelphia part of the conversation from the beginning.”