An Alzheimer's Disease Research Center
This week, researchers and clinicians from around the world convened in Philadelphia for the 2024 Alzheimer’s Association International Conference (AAIC) to discuss recent advances in Alzheimer’s disease and related dementias. Check out:
📰 Big news in Alzheimer’s space: Research breakthroughs presented at AAIC
📌 Penn at AAIC: Panel discussions, posters, and talks
🌍 From around the world: Global perspectives on Alzheimer’s research
🌐 In the news: Media coverage of AAIC
Editor’s note: This article is part of an ongoing coverage of the 2024 Alzheimer’s Association’s International Conference (AAIC). To view all highlights, please click here.
Each morning, Sarah wakes up early, makes a pot of coffee, and turns on the news. The ritual had been a part of her routine for decades. In their retirement years, Sarah’s partner, Jodi, slept in a little later but always joined Sarah eventually. Together, the two sip their coffee and watch the stories of triumph and tragedy alike on their morning station.
Sarah doesn’t remember exactly when a change in Jodi started. Watching together, the pair used to get quite moved by the morning highlights. Now, Jodi remains mostly unaffected. It’s a subtle change, but one that Sarah noted after becoming particularly emotional one morning. Not only was Jodi very uninterested in the story, but also unconcerned about her partner’s emotion.
As time passed, Jodi’s withdrawn personality became more noticeable. In social settings, Jodi began acting without regard for social norms. She lacked an interest in others’ emotions. Jodi was not aware of these changes. As a loving partner, Sarah began to worry. Together for decades, it was clear to her that Jodi’s empathetic and caring nature was being replaced with a different personality.
After seeing several clinicians, Jodi was eventually diagnosed with behavioral-variant frontotemporal dementia (bvFTD).
Empathy loss is a hallmark symptom of this form of dementia.
The Penn Memory Center (PMC) is dedicated to training the next generation of clinicians and researchers. Central to this mission is the Clark Scholars Program, designed to encourage and guide early career researchers as they study Alzheimer’s disease, mild cognitive impairment, cognitive aging, and lifelong brain health.
This year, PMC welcomes Hannah Cho, MSN, RN, ACHPN, who will join the 2024-2025 class of clinician scientists. Three Clark Scholars are continuing in the program for additional training and research development including Christopher Brown, MD, PhD; Catherine Noirse, MD, MTR; and Ellen Munsterman, MSN, APRN, AGCNS-BC.
A unique background, Cho is a nurse practitioner who specializes in geriatric medicine and palliative care. Currently, she is a doctoral student in the School of Nursing at the University of Pennsylvania. She strives to become a nurse scientist focused on improving the quality of life for people living with dementia and their family members.
In the next year, Cho will research digital literacy within caregivers of dementia patients. Specifically, she plans to interview caregivers of hospice patients to learn the best technological approaches for making dementia resources and support accessible.
“Some people are very familiar with using computers and Zoom to get access to social support and medical information,” Cho said. “Others do not have access to internet. There is a digital divide.”
Cho’s project inspiration comes from direct experiences with caregivers and families in the field.
In a recently published manuscript, researchers at the Penn Frontotemporal Degeneration (FTD) Center found that African American patients and those of low socioeconomic status are significantly less likely to access neurogenetic evaluation compared to White patients.
These findings exemplify systemic barriers and health inequities and have a direct impact on the equitable inclusion of marginalized groups in clinical trials related to Alzheimer’s disease and related dementias (ADRDs).
Members of the public and clinicians are invited to learn about advancements in Alzheimer’s and dementia research at the upcoming AAIC For All event, a no-cost, single-day extension of the Alzheimer’s Association International Conference (AAIC). This event provides a unique platform for both clinicians and the general public to engage with the latest research findings and developments in dementia science.
About AAIC For All
AAIC For All offers an invaluable opportunity to hear directly from leading Alzheimer’s and dementia researchers. Set on the final day of the AAIC, this event ensures attendees are among the first to learn about cutting-edge research announced at the conference. The event will feature insights from top global scientists, clinicians, and dementia professionals.
Who Should Attend
People Living with Dementia, Caregivers, and the General Public:
Community members, including those living with dementia and their caregivers, are encouraged to participate in the community member track. This track will provide insights into the latest research and offer ways to get involved in the fight against Alzheimer’s and other dementias.
Clinicians and Health Care Professionals:
The event also includes a track specifically designed for clinicians and health care providers. This track will present research highlights from AAIC 2024, focusing on advancements in dementia diagnosis, treatment, risk reduction, and care. Attendees can earn Continuing Medical Education (CME) and Continuing Education (CE) credits at no cost.
On May 8, the U.S. House of Representatives Ways and Means Committee unanimously passed a bipartisan bill entitled the “Preserving Telehealth, Hospital, and Ambulance Access Act.”
This bill aims to extend several telehealth flexibilities, including removing geographic restrictions from beneficiaries, expanding originating sites, and allowing clinicians such as occupational therapists and speech-language pathologists to provide services via telehealth. It also seeks to expand audio-only telehealth coverage, reduce in-person requirements for mental health service coverage, and enhance support for individuals with limited English proficiency.
The bill reflects an important continuation of bipartisan support since the rapid increase of telemedicine in 2020.
At the beginning of the COVID-19 pandemic, healthcare systems across the U.S. had quickly grown to rely on telemedicine consultation. Due to medical practice closure, risk of COVID-19 exposure, and financial instability, over 40 percent of individuals surveyed reported skipping medical care in early months of the pandemic.
For individuals with Alzheimer’s disease and related dementias (ADRDs), current studies show a significant increase in follow-up loss among patients newly diagnosed with dementia.
Telemedicine has become an essential offering, especially as its usage among physicians jumped from 15.4 percent in 2019 to 86.5 percent in 2021. At Penn Memory Center, all clinicians were reliant on this service.
There are several benefits to telemedicine for individuals with ADRDs.
Ed and Marcia Kung
Ed and Marcia Kung first discovered the Penn Memory Center (PMC) in 2008 when a neighbor asked for a ride to an appointment with his Alzheimer’s doctor.
For the 15 years since, they have been dedicated participants in the center’s Aging Brain Cohort (ABC) study, even planning to donate their brains for scientific advancement after death.
Though without cognitive complaints, their decade-plus commitment to research has trickled into their end-of-life plans. It sounds paradoxical, but the Kungs say the decision to donate their brains was relatively simple: they understood the importance of brain donation, specifically from healthy individuals, in the field of Alzheimer’s disease and related dementias (ADRDs).
‘Bob’s Last Marathon’ podcast has found a new home at the Penn Memory Center (PMC), where it continues to serve as an invaluable resource for those affected by Alzheimer’s and other dementias. The podcast, which has aired over 75 episodes since its launch in January 2021, explores a broad range of topics—from daily living tips for patients to legal and financial advice.
The podcast was inspired by the personal journey of Lena Chow Kuhar, who started the podcast after her husband, Robert Kuhar, was diagnosed with mixed dementia at PMC in 2013. Their story began over three decades ago when Lena met Robert through a lunchtime running group. Together, they ran marathons and faced life’s challenges until dementia altered their paths. Lena’s experiences as a caregiver motivated her to start the podcast, which also features expert insights, updates on dementia research, and contributions from professionals in music, art, and dance to demonstrate how these disciplines can positively impact the lives of those with dementia. The podcast addresses the emotional and social challenges of a dementia diagnosis, focusing on its impact on family dynamics and friendships.
As it transitions to PMC, the podcast aims to expand its reach and impact.
On April 18, the Penn Memory Center hosted a compelling virtual conversation with Allison Applebaum, PhD, author and founding director of the Caregiving Clinic at Memorial Sloan Kettering Cancer Center.
The discussion centered around her latest book, “Stand by Me: A Guide to Navigating Modern, Meaningful Caregiving.” Drawing from over a decade of clinical expertise and research, along with her personal experiences as the primary caregiver for her father, renowned composer Stanley Applebaum, Dr. Applebaum offered profound insights into the caregiving journey. She underscored the critical role caregivers play as indispensable members of healthcare teams.
Four years ago, SARS-CoV-2, the virus that causes Coronavirus disease (COVID-19), brought the world to a halt.
Grocery stores became eerily quiet. Masks and disinfectants sold out. Social distancing became the norm, and Zoom became a household name. The news became saturated with harrowing stories of overwhelmed hospitals and grim toll on patients.
In the four years since March 2020, researchers have documented and explained the long-term impact of COVID-19 on individuals’ health and wellbeing. Patients skipped routine checkups and annual screenings. Clinician burnout soared to an all-time high.
For individuals with Alzheimer’s disease and related dementias (ADRDs), the pandemic accelerated symptom progression, limited access to medical care, and increased isolation. But what about their caregivers?
A member of the Alzheimer’s Disease Research Center (ADRC) and Perelman School of Medicine Professor Emily Largent, PhD, JD, RN, and Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, set out to understand the caregiver experience in their recently published COVID Caregiving study.