An Alzheimer's Disease Research Center
By Alison Lynn, PMC associate director of social work
In my last article, I described how to go about the process of starting therapy: finding a therapist, figuring out how to pay, and getting prepared for a first session. Today’s focus is on how therapy can specifically help individuals living with Alzheimer’s disease and related dementias (ADRD) and their family caregivers.
“It’s only a matter of time,” said PMC Co-Director Jason Karlawish, MD, until patients book doctor visits because smart technologies detected signs of cognitive problems.
by Meghan McCarthy
Your brain is like a road map. Information travels between areas through different routes, or networks of brain cells. For individuals with Alzheimer’s disease, this travel can become difficult.
A team of researchers at the Penn Memory Center (PMC) is striving to understand the networks of the medial temporal lobe (MTL) in people living with Alzheimer’s.
“Ultimately, this may allow for insights of disease mechanisms that will hopefully help in developing more targeted therapies,” said PMC Co-Director Dave Wolk, MD.
On April 7, the Centers for Medicare and Medicaid Services (CMS) released a decision for Medicare coverage of Aduhelm (aducanumab).
CMS will cover Aduhelm under coverage with evidence development (CED). This means Aduhelm is covered for those who are participating in clinical trials.
The Penn Memory Center plans to be a testing site for ENVISION, the study to verify the clinical benefit of Aduhelm.
Penn Memory Center Co-Director Dr. Jason Karlawish said the CMS plan came from a position of “reasonableness and proportionality.” His complete reflection on the announcement can be found below.
Aduhelm was FDA-approved in June 2021 for the treatment of Alzheimer’s disease. You can read more about the history of Aduhelm and the science behind the drug on our Aduhelm question and answer page.
If you have questions about the CMS coverage decision, please send them to PennMemoryCenter@pennmedicine.upenn.edu. We will answer them as quickly as possible and post answers to our Aduhelm question and answer page.
After her husband developed Alzheimer’s disease dementia, Hilda Pridgeon turned to Medicare for help. When a pathway to resources wasn’t offered, she paved her own, fiercely advocating for better supports for patients, caregivers, and families. Hear about Hilda’s life and legacy from PMC Co-Director Jason Karlawish, MD.
You can also read about Hilda in ‘Part Two: The Birth of Alzheimer’s Disease’ of Dr. Karlawish’s book “The Problem of Alzheimer’s.” Learn more: https://www.jasonkarlawish.com/
By Cait Kearney
In 2013, Sarah was diagnosed with dementia caused by Alzheimer’s disease. In the years to follow, Sarah’s communication skills declined, and she stopped interacting with people. Occasionally, when looking at her image in the mirror, she would mumble a few incomprehensible sounds, but otherwise she didn’t speak.
Twice, Sarah did something that startled her family — she suddenly began saying words that were recognizable. She clearly said to her husband, on two occasions, “I’m scared. I want you to come with me.”
Shaken by the experience, he sought advice from Sarah’s physician.
These moments of sudden, clear communication in someone with progressive neurodegenerative disease, like those detailed by Sarah’s family, are episodes of what researchers call “paradoxical lucidity.”
“A person seems to be lost to their disease, but then there’s this unexpected and fleeting spark of clarity,” said Andrew Peterson, PhD, MA, a philosopher for the Penn Program on Precision Medicine for the Brain (P3MB) who studies paradoxical lucidity. “It could transform the way we think about dementia.”
by Varshini Chellapilla and Meghan McCarthy
Alzheimer’s disease and other related dementias (ADRD) can have major financial implications, and Jason Karlawish, MD, co-director of the Penn Memory Center (PMC), is teaming up to study them.
Money mismanagement can be an early indicator of ADRD. Common examples include missed billing payments, difficulty balancing checkbooks, and large financial decisions made on a whim. Currently, there is limited information on money management in patients with cognitive impairment
To study these early indicators, Dr. Karlawish will be collaborating with Lauren Hersch Nicholas, PhD, an associate professor in the Department of Health Systems and Management & Policy at the University of Colorado School of Public Health, on her project “Health and Financial Implications of Early-Stage Alzheimer’s Disease and Related Dementias.” The project received a four-year grant from National Institute on Aging (NIA). Currently, there is limited information on money management in patients with cognitive impairment.
“Jason was a natural person to get involved with for this project,” Dr. Nicholas said.
By Meghan McCarthy
Penn’s Alzheimer’s Disease Research Center (ADRC) has been granted a five-year renewal by the National Institute on Aging (NIA). The infrastructure grant amounts to over $16 million to support basic and clinical research in Alzheimer’s disease and related dementias (ADRDs).
With this renewal, the ADRC, led by David Wolk, MD, Jason Karlawish, MD, and Eddie Lee, MD, PhD, is striving to advance research, training, and outreach efforts and to further develop techniques for diagnosing and treating ADRDs.
Specifically, the ADRC will focus on research pertaining to heterogeneity, biomarkers, post-mortem findings, genomics, and racial disparities within research.
By Alison Lynn, PMC associate director of social work
There was a time when it felt shameful to tell someone you go to therapy. Luckily, over the past few decades, it’s become increasingly normal to be open about ones need for professional support. Particularly post-pandemic, it is impossible to scroll through Instagram without seeing some kind of infographic or inspirational story related to mental health. But, despite this wealth of new information, many still don’t know what actually happens at therapy in enough detail to decide whether it might be helpful for them. What happens in the treatment room (or, on Zoom) can feel mysterious and intimidating.
In this two-part series, I’ll explain how to get started and what to expect from a first session, as well as how therapy can specifically help individuals with Alzheimer’s disease and their family caregivers.
On January 11, the Centers for Medicare and Medicaid Services (CMS) announced its much-anticipated coverage proposal for monoclonal antibody treatments that target amyloid for the treatment of Alzheimer’s disease. According to the proposed policy, this class of drugs, which includes aducanumab, also known by the brand name Aduhelm, would be covered for people with Medicare only if they are enrolled in qualifying clinical trials.
Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, joined the Dementia Matters podcast to discuss the recent proposal, share his reaction to the decision, and tell you how this coverage policy could impact the development of other Alzheimer’s disease treatments in the future.