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How the Assessment of Capacity for Everyday Decision-making, or ACED, launched a revolution in the elder care 

By Meghan McCarthy

August 2023 

Seventeen years ago, on a visiting lectureship to the Geriatrics Division at Yale University, Jason Karlawish, MD, was approached by James Lai, MD. The young physician-in-training wondered if Dr. Karlawish would be open to collaborating on a research idea. Could we develop a measure of a person’s capacity to solve everyday problems? 

Dr. Karlawish replied with a resounding “yes,” quickly embracing the role of mentor.  

Looking back, he summed up the decision he faced: “This was in the days before Zoom and texting and such, and James was junior and working far away at a different institution. Together, that presented challenges. He couldn’t just stop into my office with a question. But never mind that, I decided. James’ timing was auspicious. I was deeply engaged in research to develop and validate instruments that assess decisional capacity.”   

They set to work.  

By Meghan McCarthy

This year, the Christopher Clark M. Scholar program at the Penn Memory Center (PMC) welcomes four new innovative researchers. 

Christopher M. Clark, MD, was a pioneer in the world of Alzheimer’s disease (AD) research and care. After accepting a faculty appointment in the Department of Neurology at the University of Pennsylvania in 1990, Dr. Clark led the Clinical Core of the Alzheimer Disease Center (ADC). He also served as a founding member of the PMC, which he directed.   

In 2020, PMC’s scholars program was renamed to honor Dr. Clark and his legacy at Penn and in the field of dementia research.   

Previous Clark Scholars have addressed topics of health equity, biotechnology, stigma, and biomarker research, amongst many focuses and gone on to win awards for work in supported decision making, leadership in palliative care, and exceptional contributions to the field.  

PMC is excited to welcome another talented group of physicians and researchers into the program. 

By Meg McCarthy 

You run several manufacturing plants for an automaker when you start getting reports of unexpected breakdowns in your new production model. You painstakingly investigate the cause of the breakdown on a part-by-part basis at one of your factories and find the problem part. You look at cars from your other factories experiencing the breakdowns but find the same part working well in those cars. What do you do? 

This captures the challenge faced by the investigators of the Alzheimer’s Disease Genetics Consortium (ADGC), whose work to identify genetic risk factors for Alzheimer’s disease (AD) is complicated by the fact that the genetic variants causing disease in persons of one ancestral background may be very different from those driving disease on other background.    

In research co-led by Adam Naj, PhD, a genetic epidemiologist and assistant professor of epidemiology at the University of Pennsylvania’s Perelman School of Medicine, including subjects with diverse ancestries was essential to detecting signals that would otherwise go unseen. 

At a virtual community event, Penn Memory Center (PMC) Co-Directors David Wolk, MD, and Jason Karlawish, MD, provided patients and families with an update on anti-amyloid treatments for Alzheimer’s disease and the plans for accessing these drugs through Penn Medicine.  

Drs. Wolk and Karlawish reviewed the risks and benefits Leqembi (lecanemab), which recently received full approval from the Food and Drug Administration (FDA), and donanemab, a drug similar to lecanemab that is expected to get FDA approval at the end of 2023.  

The co-directors said Penn Medicine and PMC have developed a workflow to rollout Leqembi and future drugs to PMC patients. This workflow will be piloted before becoming more widely available to patients.  

Drs. Virginia Man-Yee Lee and John Trojanowski

By Meg McCarthy 

Discovered years ago by a team of Penn researchers, TDP-43 (transactive response DNA binding protein of 43 kDa) is the focus of several presentations at this year’s Alzheimer’s Association International Conference (AAIC).  

The identification of TDP-43 was years in the making. Now, Virginia Man-Yee Lee, PhD, Director of the Center for Neurodegenerative Disease Research (CNDR), has dedicated her career to training the next generation of researchers devoted to this work.  

From its discovery and impact to current research applications, here’s what to know about TDP-43.  

AAIC Exhibition Hall

By Cait Kearney

This year, more than 45 University of Pennsylvania scientists were among 10,000 attendees of the Alzheimer’s Association International Conference (AAIC) held in Amsterdam, Netherlands, and online. Researchers presented and discussed their cutting-edge research related to Alzheimer’s diagnostics, interventions, and basic science. Check out the conference and UPenn highlights below.

Conference highlights

Donanemab Phase 3 study results announced

The full results of the Phase 3 TRAILBLAZER-ALZ 2 study showed that the drug donanemab significantly slowed cognitive and functional decline in people with early symptomatic Alzheimer’s.  

On NPR’s 1A, Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, said the results are “significant” and, when combined with the recent approval of the Alzheimer’s drug Leqembi, mark a “potentially revolutionary” era in Alzheimer’s research and clinical care.   

PMC Co-Directors Dave Wolk, MD, and Dr. Karlawish will give an update on anti-amyloid therapies for Alzheimer’s disease, including donanemab, at the upcoming PMC Community Discussion on August 14 at 4 p.m. Click here to register.  

Simple finger prick test may detect Alzheimer’s 

Research presented at AAIC found that blood testing from a simple finger prick may be enough to detect Alzheimer’s disease. This would make Alzheimer’s testing faster and more accessible.  

“These findings are timely and important with the recent U.S. Food and Drug Administration approvals of Alzheimer’s treatments targeting amyloid-beta where confirmation of amyloid buildup and biomarker monitoring are required to receive treatment,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer. “Blood tests — once verified and approved — would offer a quick, noninvasive and cost-effective option.” 

Hearing aids slow cognitive decline in older adults with hearing loss 

A study of more than 900 individuals showed that a hearing intervention, which included hearing aids and counseling, slowed cognitive decline in adults who were at increased risk for dementia. More research is needed to understand why the intervention was beneficial. 

By Cait Kearney

One of the Alzheimer’s Association’s largest initiatives is its free, 24/7 Helpline, which receives more than 800 calls per day and connects callers with master’s degree-level care consultants.  

Nancy Hodgson, PhD, RN, FAAN, chair of the department of biobehavioral sciences at the University of Pennsylvania School of Nursing, and her team her were asked to evaluate the Helpline and answer a very important question: Is the Alzheimer’s Association Helpline helpful?