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By Meghan McCarthy

Editor’s Note: This article is part of the Disability and Dementia Series, an ongoing project highlighting the experiences of individuals with intellectual disabilities who are affected by Alzheimer’s disease and related dementias (ADRDs).

“Take her home and love her.”

That was the advice Ellen Boyle’s parents received the day she was born, a simple but radical directive in 1965. Ellen had just been diagnosed with Down syndrome (DS), and in a time when institutionalization was often recommended, one pediatrician offered a different path. Take her home. Love her.

And they did.

A Sunday Birth 
Ellen was born on a Sunday to an Irish Catholic family in New Jersey. Her father, Jack, worked as a sheet metal foreman in Newark. Her mother, Eleanor, had three older children—Mary, Jane, and John—when she became pregnant at 39.

After Eleanor gave birth, Jack arrived at the hospital and was met with silence. The obstetrician wouldn’t explain what had happened, and fear took hold. In a moment of grace, he crossed paths with the family’s pediatrician, who went to find answers.

“She has Down syndrome,” the pediatrician eventually told him. “People will give you all kinds of advice. You can run around creation and get all kinds of opinions. But my advice? Take her home and love her.”

[Dad, Jack, with Ellen (left) • Mom, Eleanor, with Ellen (middle) • Siblings Jane, John and Mary with Ellen (right)]

The Penn Memory Center is now enrolling patients and their caregivers in the Guiding an Improved Dementia Experience (GUIDE) model, a new national Medicare program designed to improve care for people living with dementia and increase support for their caregivers.

Dementia affects millions of individuals across the United States, with that number expected to rise sharply over the coming decades. Despite its prevalence, many patients do not receive consistent, coordinated dementia care. Unpaid caregivers often carry the burden alone, which can have negative impacts on both patients and caregivers.

To address this, the Centers for Medicare & Medicaid Services (CMS) launched the GUIDE model in July 2024. Over eight years, the initiative will test a new approach to dementia care delivery, with a focus on personalized planning, caregiver support, and home and community-based services. Penn Medicine is one of 330 organizations nationwide selected to participate.

If you’ve been tuning in to The Age of Aging, you already know Jake Johnson’s voice. As producer and co-host of the Penn Memory Center’s biweekly podcast, he leads conversations about aging, brain health, and the lived experiences of individuals and families navigating cognitive change.

Now, Johnson takes on a new role as communications coordinator at the Penn Memory Center (PMC). 

Since joining PMC as a communications assistant in 2023, Johnson has contributed to messaging and storytelling efforts across platforms. His work has helped broaden the center’s reach and support conversations around research, clinical care, and community engagement. But the Age of Aging podcast is where he has left his clearest mark.  

Jeffrey Maneval, MD, is departing the Penn Memory Center (PMC) after a tenure defined by compassionate clinical excellence and a commitment to the next generation of dementia specialists. 

Dr. Maneval is the new director of cognitive and behavioral neurology at MaineHealth in Portland. In this new role, he’ll lead a clinic working to expand access to dementia care and clinical research across rural Maine. 

During his time at PMC, Dr. Maneval cared for individuals and families navigating memory loss, contributed to clinical research, and helped shape the next generation of neurologists through hands-on teaching and mentorship. He says some of his most meaningful moments came from sitting beside patients and families, helping them understand their diagnosis and make decisions about care and research. 

By Meghan McCarthy 

In 2008, while running a memory disorders clinic Michael Rafii, MD, PhD, noticed an increasing number of adults with Down syndrome (DS) among his patients. Recognizing their unique needs and the lack of specialized care, Dr. Rafii acted by opening a second clinic specifically dedicated to adults with DS. At the time, he was also working on the Alzheimer’s Disease Neuroimaging Initiative (ADNI) project. 

“For me, it was an obvious question: Could there be an ADNI for Down syndrome given that they seem to be getting a genetic form of Alzheimer’s disease?”  

The answer, at the time, was no.  

This understanding sparked Dr. Rafii’s efforts to address this gap in research and clinical understanding.  

By Meghan McCarthy 

Editor’s Note: This article is part of the Disability and Dementia Series, an ongoing project highlighting the experiences of individuals with intellectual disabilities who are affected by Alzheimer’s disease and related dementias (ADRDs). 

Mary Sparkes-Merriman was born on September 18, 1965—exactly two years after her brother Pete.  

Over the years, Mary joked to Pete that she was the ‘best birthday present’ he would ever receive. What began as a shared birthday and a childhood filled with laughter would become a lifelong bond, one that would be tested, deepened, and ultimately defined by love, resilience, and advocacy. 

Pete had Down syndrome (DS).

When he was diagnosed with Alzheimer’s disease at the age of 55, it was Mary who became his fiercest advocate and most devoted care partner. 

By Meghan McCarthy 

When I applied for a communications internship at the Penn Memory Center (PMC), I didn’t expect to be chosen. I was a full-time premedical student at Villanova University juggling chemistry lectures and four-hour labs. My availability was limited, and my writing experience was, frankly, thin.  

Yet, I did have a personal connection to dementia and a deep desire to learn. 

After my interview with the communications team, I remember ending our call with one overwhelming feeling: this place was different. For such a prestigious institution, I was taken aback by the warmth and passion exuding from each individual. I left with the hope that somehow, some way, they connected with me, too.  

Still, if you had told me then that I would not only be selected but stay with the center for the next three and a half years, I wouldn’t have believed you. 

This is my love letter to the Penn Memory Center.  

By Meghan McCarthy 

Brent Forester, MD, Dr. Frances S. Arkin chair and professor of Psychiatry at Tufts University School of Medicine, first considered electroconvulsive therapy (ECT) as a treatment for the behavioral symptoms of Alzheimer’s disease (AD) when all other options had failed. His patient, a woman in her early sixties, had become nonverbal, combative, and aggressive over her 10-year disease progression. Her care team had tried 34 different medication combinations with little success, leaving her family desperate for an alternative.  

That’s when Dr. Forester’s team turned to ECT. 

After six treatments, she smiled again. After the seventh, she returned home, requiring only one medication and monthly maintenance ECT sessions. 

“She went home to live with her family for another 10 years after it looked like she wasn’t going to live for another day,” Dr. Forester explained.  

Awed by the outcome, his team launched a pilot study to investigate ECT’s potential in treating aggression and agitation in late-stage dementia.  

By Meghan McCarthy 

The connection between mental health and Alzheimer’s disease and related dementias (ADRDs) is often overlooked and understudied. Research shows that individuals with psychiatric conditions such as bipolar disorder or anxiety have a significantly heightened risk of developing ADRDs. Approximately 30 to 50% of Alzheimer’s disease (AD) patients also experience symptoms of depression, and roughly 40% exhibit symptoms of anxiety. 

Researchers continue to ask: How do cognitive symptoms of psychiatric illness evolve into AD? And why do some individuals with no prior history of mental illness develop anxiety or depression for the first time after a dementia diagnosis? 

Brent Forester, MD, holds multiple leadership roles at Tufts—serving as the Dr. Frances S. Arkin chair and professor of Psychiatry at Tufts University School of Medicine, psychiatrist-in-chief and chair of Psychiatry at Tufts Medical Center, and director of Behavioral Health at Tufts Medicine. Throughout his career, he has focused on the intersection of psychiatric illness and dementia.

“Mental illness and dementia are family issues,” Dr. Forester said. “It touches everyone. I don’t know anyone who doesn’t have these issues in their family. No one escapes this.” 

By Meghan McCarthy

Lucid episodes in dementia describes moments of unexpected clarity in individuals with Alzheimer’s disease and related dementias (ADRDs). These episodes, which may be verbal or nonverbal, can evoke deep emotional responses from caregivers and other loved ones. Experts, Jason Karlawish, MD, co-director of the Penn Memory Center, and Justin Clapp, PhD, MPH, assistant professor of Anesthesiology and Critical Care and Medical Ethics and Health Policy at the Perelman School of Medicine, discuss the nature, frequency, and implications of these episodes.