Latest News

By Danny Yarnall

Imagine sitting in your car, engine idling in the parking lot of your doctor’s office, where she just finished explaining that you have “elevated” amyloid, a biomarker of Alzheimer’s disease. 

You haven’t noticed any memory problems, but she did say that this meant an increased but uncertain risk of developing Alzheimer’s disease. 

How would you react to this information?

Newly published research from the Penn Program on Precision Medicine for the Brain (P3MB) pulls back the curtain on what research participants thought, felt, and did after a similar scenario. Authors included Emily Largent, RN, JD, PhD; Kirstin Harkins, MPH; and Jason Karlawish, MD.

“As the science of Alzheimer’s disease biomarkers evolves, we would expect that biomarker testing will become increasingly widespread among people who are cognitively unimpaired,” said lead author Dr. Largent. “In anticipation of more widespread testing, it’s important to gather evidence to inform how clinicians talk to patients about biomarker results and to prepare patients for what they might expect.”

John Trojanowski, director of Penn’s Institute on Aging and Alzheimer’s Disease Core Center, has been studying Alzheimer’s at Penn for 30 years. (Credit: Penn Today)

By John Infanti, PennMedicine.org

The Center for Neurodegenerative Disease Research (CNDR) at the University of Pennsylvania has received a grant expected to total $18.1 million to study the underlying genetic mechanisms that cause Alzheimer’s Disease, Dementia, and Parkinson’s Disease to progress as well as how those mechanisms are related to each other and to the cell-to-cell spread of these disease proteins.

The grant, awarded by the National Institutes of Health’s National Institute on Aging (NIA), will fund four specific projects over the next five years through the NIA Penn U19: A Center on Alpha-Synuclein Strains in Alzheimer’s Disease and Related Dementias.

By Danny Yarnall

Penn Memory Center Scholar Shana D. Stites, PsyD, MA, MS was a featured guest on a recent episode of Minnesota Public Radio with host Kerri Miller.

Dr. Stites was joined by Peter Rabins, MD, MPH, in a discussion on how stigma affects people’s willingness to take novel early-detection methods for Alzheimer’s such as gene-testing for APOE4 or blood tests available to Americans on the horizon. 

Dr. Sites broke down how stigma and lack of treatment would make people think twice about discovering their risk for Alzheimer’s but highlighted the ability to make changes and preparations in life before the symptoms progress too far.

“There is that other question that is being answered by learning gene or biomarker result… ‘now that I know I’m more at risk and I’ll make more aggressive decisions about other parts of my life,’” Dr. Stites said.

Dr. Jason Karlawish speaks at a launch of the Roybal Center for Palliative Care in Dementia.

By Danny Yarnall

A new Roybal Center with ties to the Penn Memory Center will be the nation’s first to study palliative care of dementia patients. 

The new center — the Roybal Center for Palliative Care in Dementia — is led by Scott Halpern, MD, PhD, who is also the director of the Palliative and Advanced Illness Research (PAIR) Center. The University of Pennsylvania is the only university in the country with two such centers.

Researchers will benefit from a partnership with Genesis HealthCare, the largest owner of nursing homes in the U.S., to create “learning labs” for their pilot studies in nursing homes over the course of the five-year grant.

PMC Co-Director Jason Karlawish, MD, who is director of the Roybal Center Pilot Core and a member of the steering committee, presented on the history of Alzheimer’s treatment and care in a special lecture celebrating the launch. The purpose of the lecture was to familiarize the Penn Medicine community with the diagnosis and management of persons with dementia, including a discussion of the history and epidemiology of dementia, and the roles of family caregivers. Treatment, Dr. Karlawish said, is not solely working toward the goals of eradication or reversal of the disease, but promoting safe and effective management as well. 

By Danny Yarnall

Nancy Childs woke up on March 21, 2019, to upsetting news for her and her husband, Mike. The Alzheimer’s study sponsored by Biogen and Eisai for their drug aducanumab had been pulled. And the rug had been pulled out from under Mike, Nancy, and many other study participants’ feet. This was the first they heard of the study’s closure, and Penn Memory Center staff were racing to reach out to other participants to provide some guidance.

This haphazard system of communication is addressed by PMC Scholar Emily Largent, JD, PhD, RN; and PMC Co-Director Jason Karlawish, MD, in a new paper out in JAMA Neurology. The paper, “Rescuing Research Participants After An Alzheimer’s Trial Stops Early—Sending Out an SOS,” outlines current issues in participant notification following large-scale drug trials closure and identifies ways for all stakeholders to improve going forward.

Credit: @domsisti/Twitter

By Danny Yarnall

Neurology Today selected research from the Penn Program on Precision Medicine for the Brain as a part of an annual round-up of the year’s most important advancements in the field of neurology. 

The work — by PMC Scholar Emily Largent, PhD, JD, RN; PMC Co-Director Jason Karlawish, MD; and PMC Research Program Manager Kristin Harkins, MPH — studied attitudes of gene and biomarker disclosure study participants on physician-assisted-death (PAD). This caught the eye of Neurology Today’s experts for addressing an “absolutely critical” need to understand how genetic and amyloid biomarker disclosure affects patients’ plans for the future.

By Sharnita Midgett

On an early December day, Alan Russell, 71, sat down to write. Typically, he enjoys writing about genealogy and history, but on that December day he penned “Giving Back – Medical Studies,” documenting his research story and discussing the importance of using his time to give back.

“If you have the opportunity to participate in a medical study of any kind, I recommend that you do so,” Russell said. “You may not benefit yourself, but others will.”

Time Out facilitates meaningful, in-home engagement through intergenerational companionship by connecting older adults with PMC-trained college students. This includes conversation, reading, music, and may also include light meal preparation, laundry, and light grocery shopping. It does not include personal care — such as bathing, dressing, feeding, or toileting — nor administering medications or therapies. While private respite care may cost more than $20 an hour, Time Out care providers will be available for $8.50 an hour, up to 10 hours per week. Penn Memory Center families who would like to sign up or learn more should contact Meg Kalafsky, Time Out Program Coordinator, at (267) 624-4282 or megan.kalafsky@pennmedicine.upenn.edu.

By Danny Yarnall

Hazel Souder rises for an early trip to the gym before her husband Louis is awake. These quiet moments can be precious for her, the quiet moments when she’s not just a wife or a caregiver to Louis, who has Alzheimer’s. All that’s asked of her in these moments is to just be Hazel.

“You have to continue to define yourself in every stage of life,” said Hazel, who will be 80 next December.

Thanks to Time Out, a collaboration between PMC and Temple University that trains students as respite workers and offers an affordable alternative to agency care, Hazel can continue to define herself and take on all the other responsibilities she has to Louis as a wife and caregiver.

Cognitive Comedy, a free improv comedy workshop for people with cognitive impairment and their loved ones, is back at Penn Memory Center. The class will continue this year without Leah Lawler, who left to pursue graduate studies at New York University, and is now under the guidance of Jean Haskell, who has taught theatre and performance classes for Temple University’s Osher Lifelong Learning Institute (OLLI). Improv actors-to-be can let it all hang out at Cognitive Comedy sessions each at 4 p.m. every other Tuesday between March 24 and June 30 at Ralston House, Room 241, 3615 Chestnut Street. To register, email jean.haskell205@gmail.com.

By Sharnita Midgett

Looking over the top of her seafood menu, Rosemary Browne wondered what would happen if her mother tried to order alone.

“Mom,” she asked, “do you want a crab cake?” 

The questions always sought a yes-or-no answer. Open-ended questions simply drew attention to the fact that Carolyn, her mother, could no longer order off the menu by herself. 

Ever since Carolyn’s diagnosis of Alzheimer’s disease, how she interacted with the public had started to change, and it made Browne picture the struggle of her mother trying to order without knowing her options.

Browne and family members first noticed Carolyn’s memory problems in familiar places, like at her favorite restaurants and traveling to the Jersey Shore. At the same time, Browne believes, these troubles were also noticed by Carolyn’s employers as she approached 80 years of age.

“They were letting people go, and that was their opportunity to let her go,” she said.