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By Abigail Ahearn

Around the time Roy Hamilton, MD, MS, was completing his neurology training, his father began developing memory-related issues. Dr. Hamilton noticed that his father was repeating himself in a conversation, forgetting important names, and having trouble with financial management and route finding.  

At the 2020 Alzheimer’s Disease and Related Disorders (ADRD) Forum on Nov. 5, Dr. Hamilton spoke about his personal experience with the disease. 

“Even though at the time I was training to become a neurologist, there were a lot of thoughts that went through our minds and different ways of framing what was happening to my father, that sort of got in the way of a clear-eyed view of what was actually happening,” he said. “A lot of thoughts went through our minds that may have gotten in the way of him getting the kind of care that he needed initially, even though he was the father of a neurologist and someone who is going to become a cognitive behavioral neurologist who sees patients with Alzheimer’s disease.” 

Dr. Hamilton is currently  a physician researcher at the Penn Memory Center and served as the keynote speaker at the ADRD forum hosted by the Pennsylvania Department of Aging. 

By Varshini Chellapilla 

The Penn Memory Center (PMC) will continue research on aducanumab after an independent panel advised against Food and Drug Administration approval of Biogen’s Alzheimer’s disease drug, stating a lack of convincing evidence of efficacy.  

On Nov. 6, the 11-member advisory panel of neurologists and other medical experts discussed and examined the data from the clinical trials as well as other aspects of Biogen’s case in a seven-hour-long virtual meeting. Of the two Phase 3 trials, only one trial, EMERGE, showed successful results. The panel argued that that the single positive aducanumab trial was not enough evidence to support the drug’s potential success.  

PMC Co-Director David Wolk, MD, said the results of the advisory panel do not imply the ineffectiveness of the drug.  

“Instead, it means that there was not enough evidence of efficacy, in the opinion of the committee, to approve at this time,” Dr. Wolk said. “In fact, the data from aducanumab and some other recent trials of drugs with similar mechanisms suggest that targeting amyloid may indeed influence disease progression and ultimately have benefit.” 

By Varshini Chellapilla

Mitali Purohit, a clinical research coordinator for the Penn Memory Center, left the center on Oct. 30.

Previously, she worked at the University of Pittsburgh Medical Center where she was involved with clinical trials for a smoking cessation study for schizophrenia.

Purohit studied psychology at Mumbai University in Mumbai, India and earned her Master’s degree in psychology from Chatham University in Pittsburgh, Pennsylvania.

She began working at PMC in 2018. Purohit was responsible for administering cognitive and neurological assessments to research participants and patients.

“It was a pleasure to work with Mitali,” Dr. Dawn Mechanic-Hamilton said. “She was a great team member. She will be missed by the PMC, and we wish her a joyful time with her family and the best of luck in her future career.”

By Varshini Chellapilla

Anna Kozlowska, a master of social service intern at the Penn Memory Center, held up a picture in front of her camera. The picture showed a young woman playing in the guitar on a park bench. She posed simple questions to her audience of ten – Who is the young woman? Why was she there? What was she doing?  

An hour later, the young guitarist’s story had been told by the participants: She was a musician who missed her husband while he was away at war; she was singing a song about the beauty of nature; she was someone who loved making music.  

“It’s kind of like making a necklace from beads,” Kozlowska said. “We kind of string our thoughts and feelings together, and we read as it goes.”  

By Varshini Chellapilla

Today, according to the Alzheimer’s Association, more than 5 million Americans live with Alzheimer’s disease. Approximately 15 million Americans are providing care for a loved one with Alzheimer’s disease.  

How is your future and the future of your loved ones affected by Alzheimer’s disease? What can we do to help those living with dementia and the caregivers providing assistance for them? 

On Oct. 28, in collaboration with Alpha Kappa Alpha Sorority’s Omega Omega chapter, the Penn Memory Center hosted a panel titled “Memory and the Aging Brain.” Sharnita Midgett, a clinical research and outreach coordinator at PMC, and Felicia Greenfield, executive director of PMC, served as panelists, covering a wide range of topics – from the maintenance of healthy brain aging to participation in research programs.  

“For me, it is important to share all I’ve learned and continue to learn about Alzheimer’s disease with others who are caring for a loved one,” Midgett said.  

A collaborative effort is seeking nominations for people with dementia and their caregivers to participate in a panel that will engage with researchers in an attempt to improve the design of research and clinical trials. These research interventions could then, in turn, improve the lives of the patients and their loved ones.

The National Institute on Aging (NIA) IMbedded Pragmatic Alzheimer’s disease and AD Related Dementias Clinical Trials (IMPACT) Collaboratory and the Alzheimer’s Association are jointly organizing the “Lived Experience Panel” to provide feedback to researchers and discuss methods for studying non-medication interventions that can improve the quality of life of patients and their loved ones.

The Penn Memory Center (PMC) has been actively involved with IMPACT to support efforts to conduct pragmatic clinical trials of interventions with healthcare systems for those living with dementia and their caregivers. Drs. Jason Karlawish, co-director of PMC, and Emily Largent, a Christopher M. Clark scholar at PMC, lead the ethics and regulation core of the Collaboratory. Kristin Harkins, a PMC research program manager, serves as the project manager for the core.

By Varshini Chellapilla  

Clinicians and philosophers struggle to answer an ethically charged question: Are advance directives for people living with dementia useful? A recent essay suggests an entirely new way approach to answering this question. The authors include Penn Memory Center Co-Director Jason Karlawish, MD, and his colleague David Lyreskog, PhD. 

Advance directives are documents prepared to guide care for someone who is unable to make their own health care decisions. They contain information about the person’s preferences for care. They’re also called “a living will.” They have an obvious appeal to guide the care of persons living with dementia, a condition that stereotypically impairs decision-making abilities.  

Drs. Karlawish and Lyreskog, along with Saskia Nagel, PhD, of RWTH Aachen University, argue for an entirely new way of thinking about autonomy in persons living with dementia. Their argument was published in the August 6 issue of The American Journal of Bioethics under the title, “Where Do You End, and I Begin? How Relationships Confound Advance Directives in the Care of Persons Living with Dementia.”

By Varshini Chellapilla

If a person living with cognitive difficulties expresses a desire to vote, he or she ought to be assisted as needed to legally and effectively cast that vote.

This was a key message Thursday as the Penn Memory Center and Enon Tabernacle Baptist Church discussed the 2020 election.

“Truly when we vote, we lift up our voices in one great chorus,” said Jason Karlawish, co-director of the Penn Memory Center. “One vote at a time, we all become many. For most of us, this is a very private and personal act that we do. But some of us need help to vote. Some of us need someone else to help make our voice heard.” 

By Varshini Chellapilla 

Researchers at the Penn Memory Center have discovered a new and rare form of dementia, which they have called vacuolar tauopathy.  

They have observed and determined that the progression of symptoms differs from that of dementia caused by Alzheimer’s disease. Where Alzheimer’s disease is focused on memory issues early in the disease, this type of dementia affects behavioral, language and executive problems instead.  

By Kamila Ahmad 

The way researchers measure the possibility of an older adult developing Alzheimer’s disease is changing.  

Researchers from the University of Pennsylvania Perelman School of Medicine — Edward Lee, assistant professor of pathology and laboratory medicine, and Mingyao Li, professor of biostatistics — collaborated to analyze alternative methods of examining brain cells to existing ones.  

Old methods involved grinding up the brain to study the disease, which made it impossible to study the complex cell characteristics unique to each different type of brain cell. “The new technology is that there are ways to look at individual cells, one at a time, to understand what genes are being expressed in those cells,” said Dr. Lee.