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By Meghan McCarthy

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.

‘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.

By Meghan McCarthy

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.

By Meghan McCarthy

Leah Barnes

Earlier this year, the Penn Memory Center (PMC) welcomed Leah Barnes, BS, to the communications team as an outreach coordinator.

At PMC, Barnes’ outreach will focus on clinical research.

“I have always had an interest in bridging the gap between health resources and individuals who are usually least likely to receive care whether that be due to factors such as finances, access, education, transportation, or trust,” Barnes said. “This work allows me to be able to improve access to education and care surrounding Alzheimer’s disease for individuals who are the least likely to be reached due to various barriers.”

Barnes’ connection to Alzheimer’s disease and related dementias (ADRDs) is personal.

By Meghan McCarthy 

Editor’s Note: In light of the 2024 PennAITech Symposium, this article is a part of ongoing coverage on the intersection of technology and dementia. Names have been changed to protect PMC patient privacy. We sincerely thank the family involved in sharing their story with our community.

When Zachary Collins set out for a drive to Downingtown, the route was seemingly simple. Twenty miles west of his home, neither he nor his wife, Mary, thought much of the outing.  
 
Until Zachary found himself in Delaware.  

 
It was then that the pair fully appreciated the Waze app.  

Two years ago, Zachary was diagnosed with Alzheimer’s disease (AD) by Penn Memory Center (PMC) co-director Jason Karlawish, MD. He is still in the early stages of the disease.  

The diagnosis prompted a series of questions for the couple. At the forefront, Mary wrestled with a question many caregivers struggle to answer: How can she support her husband’s independence while keeping him safe?  

Often, progression of AD involves a declined ability to perform activities of daily living (ADLs). Common ADL examples include managing finances, cooking and eating regularly, and driving.  

The timeline of ADL decline is extremely individualized. For caregivers, this requires fluidity in assessing when loved ones may need more assistance in their care.  

In Zachary’s case, where disease progression has been slow, his ADLs are mostly unchanged. Since his diagnosis, for example, he has continued to drive independently. 

“My husband has always been a car guy,” said Mary. “It’s going to be hard for him to give up driving. We know that’s in the future. Right now, with the help of technology, we’re pleased that we can make this work for as long as we have.”  

On most days, Zachary can drive to familiar locations with ease. However, he does have occasional moments of confusion. 

With his diagnosis, Mary and Zachary considered tools that could enhance Zachary’s safety when driving independently. Ultimately, Mary decided to integrate technology into his care plan.  

While finding a right and preferred app took time, the couple was committed to testing out different options.  

Zachary started with Google Maps for directions but didn’t like the format. He then moved to asking Siri questions about his route. After getting a new car equipped with an integrated Waze navigation system in the center console, Waze has become his favorite.

Waze is a navigation app that integrates real-time data from users to offer routes with real-time traffic updates, turn-by-turn voice guidance, and customizable alert systems. Users that opt-in are also able to track friends and family, and route specification like ‘highway backroad only’ are also possible.  

While Zachary is behind the wheel, Waze has given Mary immense peace of mind. 

“Recently I looked at the map and it was extremely complicated,” said Mary. “There were a number of turns, multiple intersections, and I was convinced I’d have to go with him. Sure enough, he went and got back all by himself.”  

Zachary and Mary also use Life360, which is a GPS sharing service that allows loved ones to track one another.