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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.
Research Coordinator Jessica Nuñez was recently awarded the 2012 Healthcare Hero award through Penn Medicine. Jessica received the nomination from Lori and Keith Crammer, a participant and informant couple formerly involved in the bapineuzumab, or Bapi, study. After getting a brochure from Penn in the mail about the award, the Crammers decided to nominate Jessica for her devotion as a research coordinator on the study and for her constantly upbeat attitude during their research visits at the Penn Memory Center.
"Why did we nominate Jess? Because we love her," Lori Crammer said.
"It's always good to see her. She always has a smile on her face," added Keith Crammer. "She's great."
For Jessica, receiving the Healthcare Hero award was a welcome pat on the back for her work as a coordinator at the Penn Memory Center.
"After working here for so many years it shows that people trust me with their loved one's care. It's an amazing feeling because you do it not for gratification but because it's something you want to find a cure for, and it feels good when someone acknowledges the dedication and time you give to the visits," Jessica said.
Be sure to take a look at Jessica's Healthcare Hero 2012 pin, which she wears proudly to commemorate the award and what her efforts mean to the Crammers.
On December 11, Melissa Livney, PsyD, clinical psychologist at the Penn Memory Center, and George and Betsy Ulmer, a couple participating in Alzheimer's research at the Penn Memory Center, were featured on NBC Nightly News with Brian Williams segment titled "Caregivers neglect their own health in order to look after others." The number of Alzheimer's patients, and in turn caregivers, in the United States is growing, and the segment focuses on the stress that Alzheimer's disease can cause for caregivers.
“People need to give themselves permission to take care of themselves,” says Dr. Livney. “That’s what we focus on. We don’t spend much time talking about the disease and functional aspects of caring for someone with dementia. We try to help people understand how to take care of themselves."
A new study shows that Americans fear Alzheimer's more than any other disease. In this round table video segment from HuffPost Live, host Janey Varney speaks with Steven Arnold, MD, Director of the Penn Memory Center; Deborah Swiss, a caregiver; and Heather Snyder, Senior Associate Director of Medical and Scientific Relations for the Alzheimer's Association. The segment includes a discussion on Alzheimer's disease that helps shed light on the condition in honor of National Alzheimer's Awareness Month.
Hospitals and imaging centers across the country are starting to adopt a new PET scan technology that aids in diagnosing dementias including Alzheimer’s disease. The scan provides clinicians and researchers with the ability to see beta amyloid plaques in the brain, a major marker in the pathology of Alzheimer’s disease that until now could only be seen in an autopsy. This new technology makes it possible for clinicians and researchers to see these plaques in real time. But with a FDA label that limits its use to ruling out Alzheimer’s disease, the Alzheimer’s field is still figuring out its diagnostic value to older adults with cognitive complaints. Now, the medical marketplace will start to shape this value.
More than 300 centers are equipped to perform the scans, but as of now many insurers including Medicare will not cover the several thousand dollar cost of the scans. Another issue surrounding the scans is the emotional effect of revealing the results of these scans to patients and their family members.
It is possible to both have and not have Alzheimer’s disease. Contradictory as this statement is, a study reported from the Alzheimer’s Disease Neuroimaging Initiative (ADNI) supports it.
In a paper published in the October issue of the Annals of Neurology investigators reported the results of biomarker studies of 53 patients with dementia caused by Alzheimer’s disease. They found a notable proportion of these patients lacked one of the signature pathologies: brain amyloid. This result has notable scientific and policy implications.
Since 2004, ADNI, a longitudinal, NIA-industry funded study, has meticulously followed a cohort of persons with normal cognition, mild cognitive impairment, and dementia caused by Alzheimer’s disease. Key measures are biomarkers, a term that describes a measure that captures a complex pathologic process, such as how low density liproprotein (the LDL or “bad” cholesterol) captures the myriad of events leading to heart disease, and if abnormal, prompts a clinician to prescribe treatment.
On Saturday, November 17 the Alzheimer's Association's Walk to End Alzheimer's took place at Citizen's Bank Park in Philadelphia. The walk raised awareness and funds for care, support and research of Alzheimer's disease. The Penn Memory Center and Penn's Institute on Aging were present at this year's walk to spread the word on the aging and Alzheimer's-related services, programs and research available at Penn.
Scientists studying Alzheimer’s disease are increasingly finding clues that the brain begins to deteriorate years before a person shows symptoms of dementia.
Now, research on a large extended family of 5,000 people in Colombia with a genetically driven form of Alzheimer’s has found evidence that the precursors of the disease begin even earlier than previously thought, and that this early brain deterioration occurs in more ways than has been documented before.
The studies, published this month in the journal Lancet Neurology, found that the brains of people destined to develop Alzheimer’s clearly show changes at least 20 years before they have any cognitive impairment. In the Colombian family, researchers saw these changes in people ages 18 to 26; on average, members of this family develop symptoms of mild cognitive impairment at 45 and of dementia at 53.
Among residents of long-term care facilities who want to vote – and studies estimate that on average about one-thirds and in some facilities as many as three-quarters do vote – nearly all require an absentee ballot. However, for residents of many nursing homes, state requirements for what is a valid absentee ballot mean that their vote may not count.
Nursing home residents are typically disabled to the degree that they need assistance performing many basic activities of daily living such as dressing, bathing and moving about a room. The journey from their room to an offsite voting booth is simply an undue burden. Voting by absentee ballot is among the most common methods to enfranchise the disabled.
But absentee balloting is also one of the most common methods of voter fraud, such as stealing multiple residents’ ballots or throwing away ballots. No studies have shown, but rumors persist and cases accumulate, of long-term care facilities being the prime venue to commit such fraud.
Read the full post at NewsObserver.com
On October 27, 2012 Steven Arnold, MD, Director of the Penn Memory Center, presented a lecture titled "New Diagnostic Studies for Mild Cognitive Impairment and Early Alzheimer's Disease" at the First Alzheimer Caribbean Conference in San Juan, Puerto Rico. The conference provided a forum for education and discussion not only for physicians and researchers in the field but also for health care professionals and caregivers. Topics including early diagnosis, cognition and judgment, neuropsychological testing, and non-pharmacological approaches related to Mild Cognitive Impairment and Alzheimer's diaseas were discussed, and a question and answer session followed. The Puerto Rico Alzheimer's Association serves the community of Puerto Rico with services and educational programs for patients with Alzheimer's diasease and other types of dementia.
On Monday, November 5 the Penn Memory Center welcomed three visitors who work with the geriatric population at the Khoo Teck Puat Hospital in Singapore at the weekly consensus conference. Pictured from left to right: Ms. Lim Li Ying, Senior Medical Social Worker; Ms. Jesbindar Kaur, RN and Senior Nurse Manager; and Mr. Joseph Cheong Kah Heng, RN.
On October 18, 2012 the radiopharmaceutical substance florbetapir, a component that helps indicate the presence of biomarkers in the brain helpful in diagnosing Alzheimer’s disease, was approved for use in the radioactive dye Amyvid in Europe by the European Medicines Agency.
Florbetapir is the active substance in Amyvid. Florbetapir functions by binding to beta amyloid plaques in the brain, which have been found to be present in neurodegenerative dementias including Alzheimer’s disease. Amyvid is a solution which, when injected, has the ability to show the presence of beta amyloid plaques in the brain using Positron Emmission Tomography, or PET scans.
Amyvid can be used diagnostically to show plaque density in the brains of adult patients with cognitive impairment who are being evaluated for Alzheimer’s disease and other forms of cognitive impairment. It can also assist in showing a negative scan, which indicates no plaques and is not consistent with a diagnosis of Alzheimer’s disease.
My mother believed in a simple philosophy: that if you could do something, you should do something. If she heard of someone in trouble or a cause close to her heart, she would look at me and say “We should do something about this!” Or, and sometimes more often, “YOU should do something about this!”
My mother doesn’t say that anymore. She died this year from Early Onset Alzheimer’s disease, an aggressive form of the disease that usually strikes in your 40’s and 50’s. When I think of what my mother went through, what millions of Alzheimer’s patients are still going through, I can once again see and hear her clearly, “Do something about this!”
But what can we do about Alzheimer’s disease?
Because my mother was so young, my family saw the full spectrum of Alzheimer’s, from beginning, to tragic end. I’ve said repeatedly, no one wants a front row seat to this illness. Though it was a dark and difficult journey, I was awed and inspired by some amazing people -- people who faced Alzheimer’s head on and decided to “do something” about it.
Read the full story at the Maria Shriver blog
Click on the images below to display a photo slideshow of this year's Thank You Breakfast.
The 6th Annual Penn Memory Center Thank You Breakfast drew a packed crowd to the Inn at Penn’s Woodlands Ballroom on October 20, 2012. The theme of the annual invitation-only breakfast is to thank research participants for their contribution to Penn’s Alzheimer’s disease research.
Over 200 research participants along with their family members and guests gathered to enjoy eggs, bacon, fruit and pastries before attending presentations on the latest updates in Alzheimer’s disease and the results of Alzheimer’s disease research done at the Penn Memory Center.
Doctors John Trojanowski, Steven E. Arnold, David Wolk, Jason Karlawish, and Penn Memory Center Associate Director for Clinical and Research Operations Felicia Greenfield each presented the latest results from their research studies as well as updates on Penn Memory Center programs and upcoming research opportunities. The presentations concluded with an open question and answer session. Guests’ questions ranged from how biomarker results are used in clinical practice to the current and future state of Alzheimer’s disease research.
Guests’ evaluations were overwhelmingly positive. Comments from the evaluations included:
“I find this program great. It gives me some hope, and learning about the disease is very informative. Thank you for all you do.”
“This is a much appreciated event in recognition of the efforts of those of us who want to help.”
“Your research is wonderful and your sharing it like this is unbelievably generous and much appreciated.”
To learn more about research opportunities at the Penn Memory Center, visit our research page.
This fall the Alzheimer's Association will be hosting several "Walk to End Alzheimer's" events in Philadelphia and the surrounding areas. The walks will take place on:
For more information, call the Deleware Valley Alzheimer's Chapter at 1-800-272-3900 or register online at alz.org/desjsepa.
Matt Kaeberlein, PhD, has been selected to give the 2012 annual Vincent J. Cristofalo lecture, which celebrates the spirit and research of Dr. Cristofalo. Dr. Kaeberlein Dr. Kaeberlein is an Associate Professor of Pathology at the University of Washington in Seattle. He is a biologist, bigerontologist, and researcher of evolutionarily conserved mechanisms of aging, and he has authored more than 90 publications on the basic biology of aging. The lecture will take place on October 18, 2012 from 3:30-5:30pm in the BRB 2/3 Auditorium, 421 Curie Blvd. at the University of Pennsylvania. A reception will follow the lecture. If you would like to attend, RSVP via email to
firstname.lastname@example.org or via phone at (215) 898-3163.
Just in case you need another reason to cut back on junk food, it now turns out that Alzheimer’s could well be a form of diet-induced diabetes. That’s the bad news. The good news is that laying off soda, doughnuts, processed meats and fries could allow you to keep your mind intact until your body fails you.
We used to think there were two types of diabetes: the type you’re born with (Type 1) and the type you “get.” That’s called Type 2, and was called “adult onset” until it started ravaging kids. Type 2 is brought about by a combination of factors, including overeating, American-style.
The idea that Alzheimer’s might be Type 3 diabetes has been around since 2005, but the connection between poor diet and Alzheimer’s is becoming more convincing, as summarized in a cover story in New Scientist entitled “Food for Thought: What You Eat May Be Killing Your Brain.” (The graphic — a chocolate brain with a huge piece missing — is creepy. But for the record: chocolate is not the enemy.)
The studies are increasingly persuasive, and unsurprising when you understand the role of insulin in the body.
A syndrome called “post-operative cognitive decline” has been coined to refer to the commonly reported loss of cognitive abilities, usually in older adults, in the days to weeks after surgery. In fact, some patients time the onset of their Alzheimer’s disease symptoms from a surgical procedure. Exactly how the trio of anesthesia, surgery, and dementia interact is clinically inconclusive, yet of great concern to patients, their families and physicians.
A year ago, researchers at the Perelman School of Medicine at the University of Pennsylvania reported that Alzheimer's pathology, as reflected by cerebral spinal fluid biomarkers, might be increased in patients after surgery and anesthesia. However, it is not clear whether the anesthetic drugs or the surgical procedure itself was responsible. To separate these possibilities, the group turned to a mouse model of Alzheimer’s disease.
The results, published online this month in the Annals of Surgery, show that surgery itself, rather than anesthesia, has the more profound impact on a dementia-vulnerable brain.
David Wolk, MD, Assistant Director of the Penn Memory Center and Assistant Professor of Medicine, has been elected to the Memory Disorders Research Society (MDRS).
Started in Boston in 1989, the MDRS is a professional society dedicated to the study of memory and memory disorders. Members of the society share the common goal of conducting clinical research to investigate how memory works and how it malfunctions.
The society’s 140 members come from the United States, Canada, England, France, Germany, and Italy. Invitation to the society is extended only to individuals with a faculty appointment and international prominence in memory disorders research.
The society meets once a year, and the 2013 meeting will be held in Toronto, Canada.
This week, a strategic roadmap to help to the nation’s health care system cope with the impending public health crisis caused Alzheimer’s disease and related dementia will be published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association. The plan aims to link the latest scientific findings with clinical care and bring together patients, families, scientists, pharmaceutical companies, regulatory agencies, and advocacy organizations behind a common set of prioritized goals. The consensus document is the outcome of a June meeting of leading Alzheimer's researchers, advocates and clinicians, who gathered as part of the Marian S. Ware Alzheimer Program at the University of Pennsylvania.
Today, 5.4 million people are living with the disease, and more than 15 million Americans are caring for persons with Alzheimer's and other dementias, according to the Alzheimer's Association. Alzheimer's disease is the sixth-leading cause of death in the United States and the only cause of death among the top 10 in the United States that cannot be prevented, cured, or even slowed.
"Alzheimer's is an enormous and complex disease, and we believe that creative thinking, repurposing of existing funds, vigilance in reducing waste, and a constant focus on cost effectiveness will help make these recommendations a much-needed reality," said John Trojanowski, MD, PhD, senior author and director of the Penn Alzheimer's Disease Core Center.
"The diverse perspectives collected in this report provide constructive, ethical, cost-effective guidance for policymakers," said second author Jason Karlawish, MD, associate director of the Penn Memory Center. "The recommendations serve as a clear roadmap to bring caregivers, researchers, clinicians, and advocacy groups together and provide them much-needed support now and in the future."