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Most research is conducted with informed consent, a process that allows to the prospective participant to learn about the study through discussion with the investigator or study staff and to decide if participating is right for them. Yet, there are exceptions. In limited and strict circumstances, federal regulations governing human subjects allow for alterations or even waivers of informed consent. (Adobe Stock)

by Varshini Chellapilla

Most clinical trials are conducted in highly controlled environments to study the efficacy of a certain intervention. But the world we live in is often much messier than that.  

This is where pragmatic trials come in. Pragmatic trials are designed to study interventions in circumstances that closely approximate actual clinical practice as closely as possible. Some pragmatic trials include subjects who may not know that they are part of a clinical research. 

Research conducted by Penn Program on Precision Medicine for the Brain Researcher Emily Largent, PhD, JD, RN, and Stephanie Morain, PhD, MPH, an assistant professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine, looked at the data on public attitudes toward consent for pragmatic trials. The resulting article, published in The Hastings Center Report on April 11, was titled “Public Attitudes toward Consent When Research Is Integrated into Care—Any ‘Ought’ from All the ‘Is’?” 

“In order to make research as much like normal life or regular clinical practice as possible, it is often the case that we want to conduct the research without getting informed consent from participants,” Dr. Largent said. “Because once we tell people they’re in research, that can change what happens and who participates.” 

By Varshini Chellapilla
 

“Imagine a healthcare system incapable of diagnosing whether increasing numbers of older adults with weight loss, vague pains and anemia have cancer and, if they did, incapable of treating their cancer and caring for their common complications, such as pain and fatigue. That’s the problem for funding older adults with memory loss. The system is broken and a correction is needed to remedy this.” 

An excerpt from Penn Memory Center (PMC) Co-Director Jason Karlawish’s new book “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 paragraph summarizes the roadblocks faced by people with Alzheimer’s disease and caregivers as they navigate the healthcare system, as identified by Dr. Karlawish.  

On March 18, Dr. Karlawish read an excerpt from his book and answered questions about the revolutionary moments of Alzheimer’s disease history, the names of experimental Alzheimer’s drugs, and his personal evolution as a physician at a virtual launch event hosted by PMC to commemorate the release of the book.  

Shana Stites, PsyD, MA, MS, was named assistant professor in the Department of Psychiatry at the Perelman School of Medicine. 

“I’m so excited for this new adventure. The scientific and professional opportunities are thrilling, and the company couldn’t be better,” said Dr. Stites. “It’s a privilege to have the chance to help improve care and quality of life for persons with Alzheimer’s.” 

Date: March 18, 2021
Time: 4 p.m. to 5 p.m.
Location: Zoom
Registration Required

The Penn Memory Center is hosting a virtual event to celebrate the release of PMC co-director Dr. Jason Karlawish’s book, The Problem of Alzheimer’s. We cordially invite all PMC friends and family to join. Click here to register.

Dr. Karlawish will be joined by Barbara Grosz, PhD, daughter of a Penn Memory Center patient, to discuss and read from the book, followed by a question & answer with the audience.

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.”