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By Alison Lynn, PMC associate director of social work

“Stephanie” was hyper-focused on providing the best possible care for her husband, who had been diagnosed with early-onset Alzheimer’s disease – not just any regimen would do. He had a special place setting at the table, adaptive clothing, and a bin of products for sensory stimulation. When he asked the same question multiple times in a row, she took deep breaths so she could answer the same way every time without losing her temper, and she budgeted twice the time it usually took them to get out of the house so she didn’t have to rush him. As a former executive, she was used to tackling problems like this. And by all accounts, she was excelling in her role as her husband’s caregiver.

However, on the inside, Stephanie vacillated between feeling empty and overwhelmed with emotion. If she ate a meal at all, she had leftovers while standing over the sink. She canceled her own medical check-ups and her gym membership. When she lost her temper with her husband, she internally berated herself for being a bad caregiver.

Summer Self-Care Series: Mindfulness and Meditation Practices for Personal Well-Being
May 17, June 21, July date TBD, 10:00 – 11:00 a.m.
At this 3-part series, learn techniques of meditation and mindfulness to promote well-being and engage in meaningful group discussions. All are welcome, but this program is best-suited for those who have some experience with meditation.

RSVP for Mindfulness and Meditation

David Ney

Meet David Ney.

Ney completed the Penn Memory Center’s (PMC) Communications Internship while an undergraduate student at Penn. He went on to medical school at Sidney Kimmel Medical College at Thomas Jefferson University, where he is now in his fourth and final year. Throughout medical school, Ney has continued to collaborate with PMC, working on various projects ranging from medical education films to academic publications. 

Ney was “matched” with Thomas Jefferson University Hospital to complete his medical residency in psychiatry. As he prepares for residency, PMC is catching up with Ney on his future aspirations and the meaning of his PMC training.

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.”