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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.

By Meghan McCarthy 

At the Penn Memory Center (PMC), Marie Ingegneri wears many hats: events assistant, strategic planner, morale booster, and memory maker. But at the heart of her role is a simple principle: fostering genuine connection and appreciation.

Whether she’s planning a creative internal activity for staff or organizing a major community event, Ingegneri approaches each task with intention, always striving to make people feel seen and valued.

“I’m an experience creator and relationship builder,” she said—and it shows.  

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 living with Alzheimer’s disease and related dementias. 

[Beauty in Neurodiversity]

Beauty in Neurodiversity, a painting featured in the Disability and Dementia series at the Penn Memory Center, invites viewers to see the brain not simply as a singular vessel of function or decline, but as a vibrant canvas of individuality. Painted in a cubist style of repeating shapes and patterns, this piece reimagines brain anatomy through bold colors and fluid, overlapping forms. It mirrors both the complexity and beauty of neurodiverse experiences.  

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). 

Why do some individuals develop Alzheimer’s disease and related dementias (ADRDs) while others do not?  

Cognitive resilience and resistance offer promising lens for understanding this complexity. This dual phenomenon is at the heart of ongoing research led by Rory Boyle, PhD, a postdoctoral research fellow at the Penn Frontotemporal Degeneration Center (FTD) Center. Along with an international team of colleagues, Dr. Boyle is working to develop a framework for understanding resilience and resistance in Alzheimer’s disease associated with Down syndrome (DSAD).  

Currently 1 in 9 people aged 65 and older in the general population is diagnosed with Alzheimer’s disease (AD). In comparison, it is estimated that over 50% of adults with Down syndrome (DS) are affected.  

This disparity is believed to be largely due to genetics. Individuals with DS have a third copy of the amyloid precursor protein (APP) gene, which increases their risk of amyloid buildup in the brain—a hallmark of Alzheimer’s disease (AD). 

However, some individuals with DS who show changes in their brain consistent with ADRDs—such as amyloid and tau accumulation—do not exhibit symptoms of dementia during their lifetime. Analyzing data from the brain bank at the University of California Irvine (UCI) Alzheimer’s Disease Research Center, Dr. Boyle and his team found that about 13% of cases examined did not present with dementia symptoms, despite neuropathological findings indicative of an AD diagnosis. 

This week, Dr. Boyle’s team published a manuscript providing a framework for future research on this discrepancy.