Funding has been awarded for two ADCC study pilots, and they will be funded for fiscal year 2014. The first, a study by Zahra Fakhraai, is titled "The Effect of Surface Interactions on the Early Stages of Aβ Fibril Growth." In patients with Alzheimer's disease, amyloid plaques in the brain are thought to be the the cause of the disease. This study examine the evolution and structure of the amyloid beta peptide, the main component of amyloid plaques.

The second funded study is led by Rachel Gross, MD, and is titled "Radionuclide Imaging of Amyloid Plaques and Basal Ganglionic Dopamine in the Parkinson Brain." This study will use PET imaging to investigate the relationship between amyloid plaques and nigro-striatal dopamine as markers for Alzheimer's disease and Lewy body dementia, respectively. These abnormal synuclein in Lewy body dementia and amyloid plaques in Alzheimer's disease are major contrbiutors to cognitive impairment in patients.

In cities across the country, older Americans are donating their time and expertise in record numbers, new data from the Corporation for National and Community Service shows.

According to data released during Senior Corps Week (May 6-10), senior volunteering hit a ten-year high in 2011, as more than twenty million older Americans donated nearly three billion hours of services valued at $67 billion. CNCS also found that one in three volunteers is age 55 or older; that the percentage of seniors volunteering increased from 25.1 percent in 2002 to 31.2 percent in 2011; and that 72.4 percent of older adults — higher than the national average — provided informal favors such as helping out a neighbor.

Previous research has found that volunteering can have a positive effect on an older person's mental and physical health, with senior volunteers tending to report increased strength and energy levels, lower rates of depression, and fewer physical limitations.

"Volunteering helps Americans by keeping them active, healthy, and engaged," said Dr. Erwin Tan, CNCS' director of senior corps. "As our nation's older population rapidly grows, we have a tremendous opportunity to unleash the power of older volunteers on our most pressing problems."

Read the story at Philanthropy News Digest

Does a human being with Alzheimer's disease stop being a person? What can people with advanced dementia still do? How can we honor the dignity of individuals coping with Alzheimer's disease and other dementias?

Dr. Jason Karlawish presented the lecture "Finding Humanity Through Suffering" at the "Finding Humanity in Advanced Dementia" symposium that took place on April 27, 2013 at Washington University in St. Louis. Experts in the fields of patient care, psychology, philosophy, medicine and neuroscience along with a family caregiver met to discuss the effect of severe cognitive loss on people with dementia and those who care for them.

To read Dr. Jason Karlawish's full lecture, visit his website here. To read more about the program or speakers, visit the Finding Humanity in Advanced Dementia website here.

Can electrical currents in the brain improve memory loss? WHYY Radio reports that researchers at the University of Pennsylvania will test an approach called "deep brain stimulation" in Alzheimer's patients. It's been successful in reducing Parkinson's symptoms, as well as treating depression. David Wolk, MD, assistant professor of Neurology, Gordon Baltuch, MD, PhD, professor of Neurosurgery, and other Penn researchers will now study whether it can help patients with mild Alzheimer's. "The goal of this study is to stimulate one part of that network," explained Wolk. "To turn on one part of that network to sort of reboot, if you will, the entire network to see if that enhances memory function and improves overall functioning in people with Alzheimer's disease." Wolk says the Penn Memory Center is one of five sites in the U.S. participating in the study. The hope is to reduce symptoms, and possibly reverse some of the disease's effects on the brain.

To learn more about the deep brain stimulation study at the Penn Memory Center, called ADvance, visit our research page at http://pennadc.org/research/penn-memory-center-research.

Read the full NewsWorks article

While they are careful not to call it a cure, researchers at Ohio State University believe they may be able to reverse some of the ravages left by Alzheimer’s disease by implanting tiny electrodes in a patient’s brain and then hooking those wires up to a sort of pacemaker.
 

Scientists believe that deep-brain stimulation could improve symptoms by jump starting networks gunked up by the sticky proteins generated in Alzheimer’s disease.
 

The disease damages many of the brain’s networks, explained Dr. David Wolk, an assistant professor of neurology at the Perelman School of Medicine at the University of Pennsylvania and assistant director of the Penn Memory Center in Philadelphia. Wolk’s group is just starting to screen patients for a trial similar to the one at Ohio State, although the Penn researchers plan to stimulate a different area of the brain.

“The most prominent circuit involved in the disease is the one for memory,” Wolk said. “It’s thought that if we can stimulate that network we can make it perform more effectively.”

Dr. Wolk is leading this deep brain stimulation study, called ADvance, at the Penn Memory Center. For more information and to download a one-page study sheet, view the study posting here: http://pennadc.org/research/penn-memory-center-research.

Read the full story on TODAY Health

On Saturday, March 23 and Sunday, March 24 Dr. Jason Karlawish, Associate Director of the Penn Memory Center, will be featured in a nationally broadcasted radio segment by 2BoomerBabes. The interview segment will focus on topics related to the ethical challenges of Alzheimer's disease. To tune in from home the broadcast will stream live online starting at 11:00am EST on www.delmarvapublicradio.net. Please log on to the site a few minutes early as it may take a minute to log on. Alternately, check AARP Internet Radio at www.aarp.org/radio to hear the interview streaming on an ongoing basis or visit the 2BoomerBabes site to hear the interview after its original air dates at www.2boomerbabes.com.

Deborah Fries, freelance writer for the Penn Memory Center InSight newsletter, has been awarded with the 2013 Sandy Crimmins National Prize for Poetry. A resident of Elkins Park, PA, Deborah was selected by judge and noted poet Dorothea Lasky. Philadelphia Stories' Poetry Editor Courtney Bambrick calls the winning poem "an evocative and transformative piece that exemplifies a commitment to storytelling through image and momentum." Deborah wins a cash prize of $1,000 and an invitation to the Party Like a Poet celebration on April 19 where she will be awarded with the prize. Out of the hundreds of poems Philadelphia Stories received, the poetry board and final judge selected Deborah Fries’ “Marie in America” for first place.

"This prize reflects the vibrancy of the Philadelphia literary community, and the serious support it provides to poets," says winner Deborah Fries. "I am very honored to be a recipient."

Read the full Philadelphia Stories article

On April 20 Penn Memory Center Director Dr. Steven Arnold and Felicia Greenfield, LCSW, will present at "The Aging Mind 101," a workshop hosted by the LGBT Elder Initiative. Memory loss, dementia, Alzheimer’s disease and other cognitive issues present unique challenges to members of the lesbian, gay, bisexual and transgender (LGBT) communities as they age, and the LGBT Elder Initiative is hosting the event to address these issues. The event is part of the LGBTEI CONVERSATIONS series of informational programs, and it will address healthy aging and techniques for maintaining mental abilities, warning signs of disease states, the psychosocial implications for the patient, and issues facing their caregivers.

For more information about the LGBT Elder Initiative visit their website at www.lgbtei.org.

On February 12, President Barack Obama mentioned Alzheimer’s in his State of the Union Address, the first time that’s happened in thirteen years. President Obama said, "Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s; developing drugs to regenerate damaged organs; devising new material to make batteries ten times more powerful. Now is not the time to gut these job-creating investments in science and innovation.  Now is the time to reach a level of research and development not seen since the height of the Space Race." Just as with the National Alzheimer's Plan and the previous financial commitments from the Obama administration, the President’s statement about the importance of Alzheimer’s research in his State of the Union Address is based on recognition of the human and financial impact of Alzheimer's.

Read the Alzheimer's Association news release here

The Obama administration is planning a decade-long scientific effort to examine the workings of the human brain and build a comprehensive map of its activity, seeking to do for the brain what the Human Genome Project did for genetics.  The project, which the administration has been looking to unveil as early as March, will include federal agencies, private foundations and teams of neuroscientists and nanoscientists in a concerted effort to advance the knowledge of the brain’s billions of neurons and gain greater insights into perception, actions and, ultimately, consciousness. Scientists with the highest hopes for the project also see it as a way to develop the technology essential to understanding diseases like Alzheimer’s and Parkinson’s, as well as to find new therapies for a variety of mental illnesses. Moreover, the project holds the potential of paving the way for advances in artificial intelligence.

Read the New York Times article here
 

On February 7, 2013 Gov. Tom Corbett signed an Executive Order establishing the Pennsylvania Alzheimer’s Disease State Planning Committee at the University of Pennsylvania's Perelman Center for Advanced Medicine. One in 12 Pennsylvania families affected by Alzheimer’s disease Philadelphia, and the committee will work to create a state plan to address the growing Alzheimer’s disease crisis in Pennsylvania.

“Since Pennsylvania is the fourth ‘oldest’ state in the nation, it is critical that we unite to find a cure and help those who are living with Alzheimer’s disease, as well as those who care for them,” Corbett said. “This committee will bring together experts to address the challenging issues related to this disease.”

Secretary of Aging Brian Duke will serve as the chairperson of the committee that will examine the needs and research the trends of Pennsylvania’s Alzheimer’s population. The committee will include representatives from various state agencies as well as those personally impacted by Alzheimer’s disease. They will have one year to develop a planned approach for Pennsylvania relating to Alzheimer’s disease and other related brain disorders.

See the video at the PA Internet News Service
 

The lack of definitive biological markers for the earliest stages of Alzheimer’s disease has made it impossible to enroll patients in drug-research trials, U.S. regulators said, slowing development of new treatments.

The methods for trials were established in 1984 and cover patients with full-blown dementia who suffer both cognitive and functional limitations, the Food and Drug Administration said in a statement today. The agency is proposing to relax guidelines for early-stage Alzheimer’s drug trials by letting researchers show that a medication slows the cognitive decline, rather than improvement in both cognitive and functional deterioration.

Read the full article on Bloomberg

Robert Green, MD, MPH presented the grand rounds lecture titled Ethical Dilemmas in Genetics Research: When should subjects learn their results? on Tuesday, January 29 to a packed crowd in the Surgery Theater at the Hospital University of Pennsylvania. Dr. Green’s lecture addressed the question of how to proceed when discovering incidental findings in genetic research, such as discovering a subject’s likelihood to be a carrier for certain diseases, and the ethical implications that come with revealing that information to the subject or patient.

Dr. Green is a physician and scientist at the Brigham and Women’s Hospital and Harvard Medical School in the division of genetics and department of medicine. Dr. Green's research has led to key contributions in understanding genetic risk factors for Alzheimer’s disease, including the development of risk estimates based on family history and genetic markers.

It has the makings of a science fiction movie: Zap someone's brain with mild jolts of electricity to try to stave off the creeping memory loss of Alzheimer's disease. And it's not easy. Holes are drilled into the patient's skull so tiny wires can be implanted into just the right spot.

A dramatic shift is beginning in the disappointing struggle to find something to slow the damage of this epidemic: The first U.S. experiments with "brain pacemakers" for Alzheimer's are getting under way. Scientists are looking beyond drugs to implants in the hunt for much-needed new treatments. The research is in its infancy. Only a few dozen people with early-stage Alzheimer's will be implanted in a handful of hospitals. No one knows if it might work, and if it does, how long the effects might last.

Kathy Sanford was among the first to sign up. The Ohio woman's early-stage Alzheimer's was gradually getting worse. She still lived independently, posting reminders to herself, but no longer could work. The usual medicines weren't helping. Then doctors at Ohio State University explained the hope - that constant electrical stimulation of brain circuits involved in memory and thinking might keep those neural networks active for longer, essentially bypassing some of dementia's damage.

Sanford decided it was worth a shot. "The reason I'm doing it is, it's really hard to not be able, sometimes, to remember," Sanford, 57, said from her Lancaster, Ohio, home.

Read the full article on AP News

By James Flory and Jason Karlawish

“If there’s a blue pill and a red pill, and the blue pill is half the price of the red pill and works just as well, why not pay half price for the thing that’s going to make you well?”

With these words, President Barack Obama not only demonstrated his hip sci-fi credentials—Morpheus’s choice to Neo was either to take the blue pill and remain happy but ignorant of the truth, or the red pill, which would reveal to him a sometimes-painful reality and also launch the lucrative “Matrix” trilogy of movies—but also his desire to take a 21st-century, data-driven approach to clinical decision making and health care policy.

Among competing treatments for the same disease, which one is best? Which one is worth the money? These questions are the core of comparative effectiveness research. Half of insured patients in the United States are on chronic medications for conditions such as diabetes, hypertension, and high cholesterol. Patients, physicians, and policymakers need reliable data to know what to take, what to recommend, and what is worth paying for. Typically, however, they don’t have these data.

The Affordable Care Act, better known as Obamacare, has implemented a number of initiatives to address this problem. One of the largest is the Patient-Centered Outcomes Research Institute, or PCORI. A core mission of PCORI is to conduct comparative effectiveness research that gives patients and their health care providers the best evidence to help make more informed decisions. As promising and common sense as this mission is—because why not pay half price?—solid gold evidence to answer a patient’s question “Should I take the red pill or blue pill?” is hard to obtain.

Read the full article on Science Progress

Watch this Ann's Choice Today interview as David Wolk, MD, Assistant Director of the Penn Memory Center outlines the benefits of the multidisciplinary approach provided at the Penn Memory Center.

The Perelman School of Medicine and the department of Medical Ethics and Health Policy at the University of Pennsylvania announce the creation of the Penn Neurodegenerative Disease Ethics and Policy Program. The new program will support research, education and training to identify and address the ethical and policy implications of advances in the diagnosis and treatment of neurodegenerative diseases, and work toward forming best practices for how these advances can be successfully translated into clinical practice.

With support from the Provost’s Office, the MetLife Foundation, the Michael J. Fox Foundation and the Robert Wood Johnson Foundation, the program will examine the ethical, legal and social impact of neurodegenerative diseases; develop best practices and guidelines for biomarker testing in clinical trials and clinical care; and examine the value of biomarker-based diagnostics and therapeutics. The program will also create “Making sense of Alzheimer’s Disease,” a web-based resource to educate patients, families and clinicians about these issues.

Jason Karlawish, MD, Associate Director of the Penn Memory Center and an international leader in the neuroethics of aging, will serve as the program's inaugural director. Karlawish describes the Program as “first of its kind. I’m honored to serve as the inaugural director.”

Read the full Penn Medicine news release

For many in the Alzheimer’s disease (AD) community, the Food and Drug Administration’s approval in April 2012 of florbetapir for imaging amyloid plaques in individuals being evaluated for AD or other causes of cognitive decline was bittersweet. The field celebrated the progress made in developing imaging biomarkers of AD, but it also mourned the loss of an individual whose contributions were critical for this success. In January 12th, 2012, Chris Clark died from the effects of a sarcoma, just 29 days after his 65th birthday.

Christopher M. Clark, MD, after retiring from the Department of Neurology at the University of Pennsylvania in 2007, became the Medical Director for AVID Radiopharmaceuticals in Philadelphia. In was in this role that he led the investigative team that ultimately demonstrated the ability of a florbetapir PET scan to detect brain deposits of Ab amyloid. This landmark research, published in the Journal of the American Medical Association in 2011, represented a key advance in the development of clinically applicable AD diagnostics. It also was the culmination of Chris’ career that was dedicated to moving AD from a poorly understood, rarely diagnosed disorder, to a widely recognized common cause of late-life dementia.

After training in neurology at Pennsylvania Hospital and the Columbia-Presbyterian Medical Center, in 1985 Chris took a faculty appointment at Duke University. He soon joined Al Heyman, MD, and others from Duke to establish the multicenter Consortium to Establish a Registry for Alzheimer’s Disease (CERAD), which was the first effort in the United States to standardize the clinical, cognitive, and neuropathological assessment of AD. Chris was a major contributor to CERAD’s Clinical Core, which relied on his clinical acumen and sound judgment to develop and implement a standard diagnostic approach to AD. Chris also served as the Clinical Core Leader for Duke University’s Joseph and Kathleen Bryant Alzheimer Disease Center (ADC) and  directed Duke’s Memory Disorders Clinic. He then accepted a faculty appointment in the  Department of Neurology at theUniversity of Pennsylvania in 1990 where, until his retirement in 2007, he led the Clinical Core of its ADC as well as serving as the ADC Associate Director. Chris was instrumental in establishing the Penn Memory Center, which he directed.

Chris had a particular talent for developing efficient and clinically applicable methods for the early and reliable diagnosis of AD that could be readily adopted into primary care practice. He co-developed the Dementia Severity Rating Scale, a self-administered scale that a family member could complete and whose scores assisted in diagnosing dementia and mild cognitive impairment. He also made important scholarly contributions to the development of therapies for AD, the characterization of cerebrospinal biomarkers for AD, and the exploration of the relationship between Parkinson’s disease and AD.

Beyond these accomplishments, he was a masterful clinician and was widely loved and revered by his patients and their families and highly regarded as a colleague by his peers. He was a wise mentor to many faculty and staff. People were drawn to Chris by his kindness, good humor, and willingness to listen carefully to what others had to say. When he deigned to speak, others listened intently because it was always carefully considered and constructive. Chris made  almost any situation better by his involvement. He also was exceptionally well-rounded, with interests that went far beyond medicine. Among other interests, he enjoyed horseback riding, good food and drink, history, and travel. He was happiest when he could share his experiences with others, and most especially his beloved wife, Anne.

In the months that followed his death, as papers on florbetapir were published that bore his name with an asterix indicating “deceased,” we witness how his legacy endures. While an ambitious and deeply committed researcher, he had a quality that is perhaps uncommon amongst researchers. The work was not about him, but instead, it was about the cause. A colleague related a story of how in December 2011 he sent her a friendly email inquiring how she was and wishing her well. He asked about her children, but said little of himself. In the weeks that followed, he made many other contacts with colleagues and friends, finished papers, and took a final trip with Anne to The Netherlands. What few knew, and could not guess from his continued expressed joy of life, was that he had decided to cease further therapy for a tumor that was, sadly, relentlessly growing and soon to claim his life.

Most would say that there never is a good time to die, but up to his very last day, Chris Clark showed all of us a good way to live.

Published in Alzheimer's Disease and Associated Disorders, Volume 26, Number 4, October–December 2012

 

People with Alzheimer's disease are less likely to participate in a clinical trial if they have non-spouse caregivers, according to a study by a team of researchers including the Perelman School of Medicine at the University of Pennsylvania. The new study, published in the December 19th, 2012, issue of Neurology, the medical journal of the American Academy of Neurology, demonstrates that additional recruitment and retention strategies may be required to increase enrollment of AD patients with caregivers other than spouses.

"The majority of Alzheimer’s patients are cared for by caregivers who are not their spouses, but we discovered that in Alzheimer’s disease clinical trials, most patients’ caregivers are their spouses," said senior study author Jason Karlawish, MD, co-director of the Penn Memory Center and professor of Medicine, Medical Ethics and Health Policy in the Perelman School of Medicine at the University of Pennsylvania.

Penn Medicine News Release