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By Meghan McCarthy 

Author’s Note: This article is part of ongoing coverage of the 2024 Alzheimer Association’s International Conference (AAIC). To view all highlights, please click here.   

Researchers at the Penn Frontotemporal Degeneration (FTD) Center found that high neighborhood deprivation levels are associated with shorter survival and faster cognitive decline in patients with behavioral-variant frontotemporal dementia (bvFTD).  

BvFTD accounts for nearly half of frontotemporal dementia (FTD) cases. Although symptoms can vary across patients, most patients with bvFTD experience impairments in social functioning and personality. With respect to cognitive symptoms, patients with bvFTD often experience deficits in executive function such as difficulty with multi-tasking, planning and organization. 

Last year, researchers at the Penn FTD Center found that Black individuals with FTD have greater disease severity and more impairment with daily activities. However, as a relatively rare disease, the impact of differing socioeconomic backgrounds in clinical symptoms and outcomes in patients with bvFTD remains understudied.  

The Area Deprivation Index is a ranking of the level of disadvantage in a given area relative to the wider nation. The measurement is calculated from census data and accounts for 17 socioeconomic variables, covering the domains of education, employment, housing-quality, and poverty. A higher ADI score indicates living in an area of higher disadvantage. 

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

By Meghan McCarthy  

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.

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.