“Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center” premieres at the Penn FTD Center Caregiver Conference 2017

On Friday, May 12, 2017, the Penn Frontotemporal Degeneration (FTD) Center hosted its 9th annual Penn FTD Caregivers Conference at the University of Pennsylvania. The day-long conference held at the Smilow Center for Translational Research welcomed 150 attendees and consisted of a series of lectures that covered information around the latest scientific advances in research on FTD and its related disorders, such as Amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s Disease and Corticobasal degeneration (CBD), as well as practical caregiving issues such as strategies for symptom management, understanding the genetics of FTD and genetic testing options, respite and supportive resources for caregivers, and legal and long-term care planning.

One of the highlights of this year’s conference was the premiere of “Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center,” a short film sharing the stories of three caregivers whose loved ones are patients at the Penn FTD Center.

“The brunt of this disease falls solely on those closest to the individual with the disease unfortunately and it is very difficult to navigate the healthcare system and obtain the types of resources that give structure to a patient’s day-to-day life and to help a caregiver keep a patient safe and cognitively stimulated,” said David Irwin, MD, assistant professor and Cognitive Neurologist in the Penn FTD Center. The goal of this video is to show caregivers and family members of those with FTD that they are not alone in this life-altering process and that there are many support groups and community and medical resources available to them – including many at the Penn FTD Center – to help them every step of the way.

Watch “Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center”*:

Two Penn FTD Caregivers Conference sponsors, the Alzheimer’s Association Delaware Valley Chapter and the Association for Frontotemporal Degeneration (AFTD), were also in attendance to answer questions and present information on the many advocacy and community resources that they offer for patients with FTD or related disorders and their families and caregivers.

Learn more about the Penn FTD Center at: https://ftd.med.upenn.edu

* Learn more about each individual caregiver by watching their full story! Click the “i” icon bubble in the top right hand corner of the video for a drop down menu with links to each caregivers story! If you are watching on a mobile phone, click the title of the video which will open a drop down menu containing the links to each caregiver’s story as well as a link to the Virtual Tour of Penn’s FTD PPG and Penn FTD Center to learn more about the FTD research and care taking place at Penn.

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Eliezer Masliah, MD, Director of NIA’s Division of Neuroscience visits Penn

EliezerMasliah_Flyer5217On Tuesday, May 2, 2017, Eliezer Masliah, MD*, Director of the National Institute on Aging’s (NIA) Division of Neuroscience, paid a visit to the University of Pennsylvania’s Institute on Aging (IOA), Center for Neurodegenerative Disease Research (CNDR), and Penn Neurodegeneration Genomics Center (PNGC).

The reason for Dr. Masliah’s visit was not just to learn about the neurodegenerative disease and aging-related research that is taking place in these centers here at Penn, but also to see how they all collaborate and work toward mutual goals. This gave him the opportunity to see firsthand how NIA and National Institutes of Health (NIH) funding is being used and made worthwhile to support the groundbreaking work of these centers.

Several topics were covered during the visit including the inception and mission of the new Penn Neurodegeneration Genomics Center (PNGC), directed by Gerard D. Schellenberg, PhD, and its five NIH-funded projects, the Alzheimer’s Disease Genetics Consortium (ADGC), Alzheimer’s Disease Sequencing Project (ADSP), Consortium for Alzheimer’s Sequence Analysis (CASA), Center for Genetics and Genomics of Alzheimer’s Disease (CGAD), and the NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS). Dr. Schellenberg and other PNGC members, including co-director Li-San Wang, PhD, associate professor of Pathology and Laboratory Medicine and principal investigator of NIAGADS, presented some of the current work and future plans for PNGC to achieve their overarching goal to “completely resolve the genetics of Alzheimer’s disease.”

After the morning session, Dr. Masliah joined John Q. Trojanowski, MD, PhD, Director of the IOA, and Virginia M.-Y. Lee, PhD, Director of CNDR, with several of their lab members as well as several Penn faculty working in neurodegeneration, for an open discussion on the multidisciplinary approach of the IOA and CNDR. A key feature of these centers is their ability to collaborate across many different disciplines within the University of Pennsylvania’s Perelman School of Medicine. This includes faculty members from several different departments such as Pathology and Laboratory Medicine, Neurology, Psychiatry, Geriatric Medicine, and Epidemiology to name a few.

Among the many topics discussed, one that was of particular interest to Dr. Masliah was the large number of young investigators and finding out what it was that attracted them to Penn. Many of the lab members were eager to participate and to share their outlook on why Penn was the right place to start their research career. Overall, they agreed that the collaborative, multidisciplinary nature of these centers is what appealed to them most. They also praised Penn for its training and the encouraging environment that it provides for applying for research grants and other funding opportunities. Additionally, Penn is well known for its state of the art databases and data sharing, providing top-notch integration and access to resources for its investigators. Dr. Masliah was especially impressed with CNDR’s Integrative Neurodegenerative Disease Database (INDD) which tracks nearly 17,000 patients and/or research subjects at Penn’s several neurodegenerative disease related centers.

The visit concluded with a lecture by Dr. Masliah, titled “Advancing the National Plan to Address AD through National and International Collaborations.” During his talk, Dr. Masliah discussed the recent $2 billion NIH budget increase which includes $400 million new Alzheimer’s disease funds, new NINDS funding opportunities in partnership with NIA on Lewy body dementia (LDB), and the 17 new Alzheimer’s disease FOA’s.

In terms of what to expect for the future, Dr. Masliah says to stay tuned for changes in pay-lines for FY17, more funding for fellowship and K awards, and more funded FOA’s and 27 new FOA’s.


* In his position as the Director of the NIA’s Division of Neuroscience, Dr. Masliah oversees the world’s largest research program on Alzheimer’s disease-related dementias and cognitive aging. He is an internationally renowned neuroscientist and neuropathologist and has approximately 800 original research articles and 70 book chapters. 

Unlocking the Mysteries of Delirium

What is delirium and how should we handle it?

EdwardMarcantonio_FlyerLast month, Edward Marcantonio, MD, MS, the IOA’s most recent visiting scholar and professor of Medicine at Harvard Medical School*, offered some answers to these questions during his lecture at the University of Pennsylvania.

In the 1980’s, as he was just beginning his career in the medical field, Dr. Marcantonio was taught that it was essentially “normal” for older people to go a little crazy – or “bonkers” as he calls it – during their hospital stay. The belief was that there really was not much that could be done about it, but if the symptoms became overly bothersome, prescription medications such as haloperidol or diazepam — drugs commonly used for mental or psychiatric disorders — would “take care of it.”

Today, while we are much better at recognizing what delirium actually is – and understanding that it is not “normal” – there is still some confusion across disciplines in the terminology used to identify this condition. Delirium is often referred to as acute confusional state, altered mental status, subacute befuddlement, or postoperative psychosis.

Regardless of what term is used, the diagnosis of delirium, or any of the other aforementioned names, is characterized by confusion, restlessness, and a disturbance in attention and awareness that develops acutely and tends to fluctuate. Delirium is typically referred to as one of two types—prevalent delirium or incident delirium. Prevalent delirium is when the condition is present and observed at the time of hospital admission and incident delirium develops during the hospital stay.

Delirium is even more common than most people realize. According to Dr. Marcantonio, it is experienced in 30-40% of medical inpatients over 70 years old, 15-50% of surgery patients over 70 years old, and at least 75-80% of intensive care unit patients over 18 years old.

In his line of research, Dr. Marcantonio focuses on two main aims: 1) improving delirium identification at the bedside and 2) understanding the pathophysiology of delirium and its association with dementia.

Improving delirium identification at the bedside

Because symptoms of delirium can come and go and vary in severity, identifying it can be quite a challenge. “When I got started in the field there were a number of studies that sent research teams out doing gold standard delirium assessments and then compared that to what was diagnosed in clinical care and it turned out that less than 50% of cases were recognized,” said Dr. Marcantonio.

In the 1990’s, the Confusion Assessment Method (CAM) was developed to help detect delirium in patients. The CAM looks at four key features: 1) acute change/fluctuating course, 2) inattention, 3) disorganized thinking, and 4) altered level of consciousness. In order to officially diagnose delirium according to the CAM diagnostic algorithm, the patient must be experiencing both features 1 and 2, in addition to either 3 or 4. While recognizing these features as signs of delirium can produce a successful diagnosis, there still needed to be a standardized way to identify these features in the patients. With this in mind, Dr. Marcantonio developed a series of methods and assessments for detecting delirium – some taking as little as 30 seconds to administer.

Learn more about these assessments in Dr. Marcantonio’s full lecture starting at 0:20:28:
Full lecture

Understanding the pathophysiology of delirium and its association with dementia

Although a variety of situations, such as dehydration, visual or hearing impairment, immobility, and sleep deprivation, can increase the chances of developing delirium, current research suggests that one of the strongest risk factors – aside from aging – is dementia.

One emerging hypothesis is that delirium may represent a state of neuroinflammation. It is believed that this neuroinflammation could be the link between delirium and dementia and if this theory is confirmed, it could have some very important therapeutic effects for both conditions.

Learn more about the link between dementia and delirium in Dr. Marcantonio’s full lecture starting at 0:40:05:
Full lecture

Although we have come a long way over the years to better understand delirium, there is still much work left to do. The ultimate goals are to establish effective and efficient assessments of delirium as a part of daily hospital vital sign checks and to develop pathophysiologically-based treatments to improve the short and long-term outcomes of this condition.

To view the full lecture, click here.

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* Dr. Marcantonio is also the Section Chief for Research in the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center (BIDMC).