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The world of Alzheimer’s disease has a complicated landscape to navigate. Neighborhoods, defined by their resident caregivers, patients, researchers, or policymakers, are constantly redefining their borders.

On Tuesday, February 23, Jason Karlawish provides a map to guide us through this world.

The Problem of Alzheimer’s: How Science, Culture and Politics Turned a Rare Disease Into a Crisis and What We Can Do About It, published by St. Martin’s Press. The Problem of Alzheimer’s looks to the disease’s past to explain its present and prepare for the future, combining Karlawish’s areas of expertise as a researcher, physician, and storyteller. 

by Kamila Ahmad and Varshini Chellapilla   

People living with cognitive impairment often are able to make their decisions independently. But as their condition changes, their decision-making abilities change as well.   

How should people living with mild cognitive impairment or mild stage dementia, their families, and physicians navigate this typically slow and difficult transition? Is there some livable space between what seems to be two extremes — either to try one’s best or surrender and let others take over?  

In a recent paper “Supported Decision Making With People at the Margins of Autonomy,” researchers at the Penn Program on Precision Medicine for the Brain (P3MB) provided a comprehensive ethical argument in support of a third way. The authors argue for a novel approach to decision making, called supported decision making.   

“We felt like there was a good space for us to look at the tool of supported decision making and think about how that could be used to help people who have progressive, neurodegenerative diseases maintain their autonomy to the greatest extent possible,” said P3MB Researcher Emily Largent, PhD, JD, RN, an author of the research paper.  

Additional authors included PMC Co-Director Jason Karlawish, MD, and Andrew Peterson, PhD, assistant professor of philosophy at George Mason University. Their work was published in the American Journal of Bioethics.

Gerry Alexander, right, and Maddy Larkin read “The Glass Menagerie” by Tennessee Williams during a recent Weekly Smile session. Knowing that Alexander had acted in community theater, Larkin sent him a copy of the play, along with other readings.

by Varshini Chellapilla

In the middle of the pandemic, many older adults have found themselves more isolated than before, with their connection to the outside world restricted and the emotional toll of being at a higher risk for the virus. A national survey conducted by the University of Michigan National Poll on Healthy Aging found that 56% of older adults reported that they were feeling of isolated in June 2020.  

During this time, the Penn Memory Center offers an iteration of the Time Out Respite Care program, which encourages social engagement and companionship in the lives of older adults with cognitive impairments by connecting them with college students.  

Titled Weekly Smile, the program started in June and is run by Meg Kalafsky, a research and program coordinator at the PMC. It is conducted completely online. Students and older adults chat and engage with each other via video call or the phone for 45 to 60 minutes per week. 

“The previous program was set up to have positive impacts on people’s anxiety, depression and overall stress levels,” Kalafsky said. “I think, with the current version, what we’re really effective at changing is someone’s stress and their isolation. I think it’s been challenging, but also at the same time, I think one of the real benefits of this pandemic is that people are really willing to try something new and to be creative.” 

Penn’s Alzheimer’s Disease Research Center is holding an Aging Research Summer Internship from June 12th to August 11th, 2023. Interns will receive hands-on aging research experience and faculty mentoring. Applications are due to jedrzmk@pennmedicine.upenn.edu by March 17th.

by Sally Sapega

Every Monday, Milla, a patient at the Penn Memory Center, sits at a laptop in her home, virtually “hanging out” with Emily, a student at Temple University. Despite having memory issues from dementia, she remembers her buddy from week to week. Emily often brings her dog to the virtual visits and Milla enjoys saying hello.

“I’m at the house working but I can hear them laughing and talking,” said Milla’s niece. “It makes me feel good that she has this good time for an hour every week. They really connected.”

Welcome to Weekly Smiles, a partnership between Penn Memory Center and Temple University that is virtually helping to fill a social interaction need for the elderly that COVID has intensified.

By Varshini Chellapilla   

 When the coronavirus pandemic began, there was great concern about the allocation of scarce healthcare resources like ventilators, ICU beds and hospital staff.  

In large cities like New York, health policy experts feared that hospitals would be overwhelmed by patients needing lifesaving treatment. In some rural areas, health policy experts were also concerned many hospitals did not have the resources they needed to care for patients seriously affected by the novel coronavirus.   

“In public health emergencies, there’s always a concern about finite  resources,” said Andrew Peterson, PhD, a researcher with the Penn Program on Precision Medicine for the Brain. “How you distribute those resources to patients in need is ethically complicated.”  

Dr. Peterson, an assistant professor of philosophy at George Mason University, in collaboration with colleagues at The University of Manchester, conducted a study to understand the opinions of average Americans on these allocation decisions in the pandemic. The study, titled “Public attitudes toward allocating scarce resources in the COVID-19 pandemic,” was published on Nov. 4 in scientific journal PLOS ONE.  

By Varshini Chellapilla 

When studying the risk factors that affect cognitive impairment and dementia among older adults, researchers often focus on how each factor, alone, causes cognitive impairment. But what happens when these factors are examined simultaneously? How do these factors affect people across various groups? 

Jordan Weiss, PhD, a former Penn Memory Center trainee conducted a data-driven prospective study to evaluate the top predictors of dementia among older adults in the United States and how these predictors vary based on race/ethnicity and gender. The study was published in PLOS ONE on Oct. 7. 

Weiss and his team found that the five major predictors across all groups were lower education, loneliness, lower wealth, lower income, and lower self-reported health. However, these predictors varied across racial/ethnic and gender groups.  

“Whereas most prior work has focused on linking a specific risk factor to dementia, our goal was to systematically and simultaneously identify the top predictors of dementia and how they varied across groups defined by race/ethnicity and gender,” Weiss said.  

by Varshini Chellapilla 

Jay Austin was the first study participant to return to the Penn Memory Center after in-person testing was resumed.

Jay Austin

Before his visit in July Austin, a participant of the Aging Brain Cohort (ABC) study, had to undergo COVID-19 pre-screening as part of safety protocols. On the day of his appointment, he walked into the Perelman Center for Advanced Medicine, he was greeted by volunteers in masks and personal protection equipment who would check his temperature.

by Cait Kearney

Roy Hamilton, MD, MS, was named to Cell Press’ list of 1,000 Inspiring Black Scientists in America — a list highlighting the excellence of Black people in the scientific community.  

Dr. Hamilton is a neurologist and practicing clinician at PMC, an associate professor in the Departments of Neurology and Physical Medicine and Rehabilitation, and is director of both the Laboratory for Cognition and Neural Stimulation (LCNS) and the Brain Science, Translation, Innovation and Modulation Center (brainSTIM). 

Dr. Hamilton also strives to advance diversity and inclusion at Penn, serving as assistant dean for cultural affairs and diversity for the Perelman School of Medicine and vice chair of diversity and Inclusion for the Department of Neurology.  

Learn more about Dr. Hamilton’s work here, and read the full Cell Press list here.