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Penn Memory Center News
Taking care of yourself is one of the most important things you can do as a caregiver. Regular physical activity can help you increase your energy levels needed for caregiving activities, prevent chronic diseases, and reduce feelings of depression or stress.
Worried about finding the time to exercise? Make a plan to exercise with the person you care for because people with Alzheimer’s disease can benefit from exercise, too.
Here are some ideas to help get you going: Exercise and Physical Activity: Alzheimer’s Caregiving Tips.
The April issue of the journal Health Affairs is devoted to “the long reach of Alzheimer’s disease.” The issue examines research, national policy, caregiver support, and end-of-life care in an expansive collection of 28 articles.
A large portion of the journal issue concentrates on supporting people with the disease. “Our role is to make the case for caregivers and patients currently in need,” said Sarah Dine, senior deputy editor of Health Affairs. She hopes the journal will increase awareness about their plight and inspire good policy. “It’s hard to get funding for care managers who are training for the workforce, or support for family caregivers on the ground,” she told Alzforum.org.
One urgent problem is that people caring for Alzheimer’s patients have few options for guidance or help. “The healthcare system largely neglects caregiving,” said Jason Karlawish, Associate Director of the Penn Memory Center.
“Although multiple randomized controlled trials have shown that education, skill training, and support benefit not just the caregiver, but the patient, we don’t provide those interventions as a matter of routine care,” he said. “That simply has to change.”
Read more at Alzforum. org
Jason Karlawish, MD, professor of Medicine, Medical Ethics and Health Policy, speaks with WTOP radio in Washington, D.C. about his Health Affairs paper looking at ways society can prepare for living with Alzheimer’s disease. “If you have a patient with dementia, you invariably have at least one other person who has to take care of that person,” said Karlawish.
“They start to have Alzheimer’s disease…they live the disease, they think about the disease, they make decisions for the patient, so in some sense, the disease is as much their own experience as it is, of course, for the patient. Now is the time to be thinking about living with a brain at risk.”
“Whether as patients or as caregivers, we all have Alzheimer’s disease,” says Karlawish. “The question we must engage with is, How should we live with it?”
Jason Karlawish’s review of Margaret Lock’s book, The Alzheimer Conundrum, was recently published in Health Affairs, a journal of health policy thought and research. Dr. Karlawish, Associate Director of the Penn Memory Center, writes that The Alzheimer Conundrum is “an ambitious dissection of a vexing problem: Despite several decades of research, dementia remains a very real and devastating problem, and the causes of the most common form—Alzheimer’s disease—remain elusive.”
“In 2002 Margaret Lock, a medical anthropologist at McGill University in Montreal, Quebec, started work on a book about the social implications of genetic testing for complex diseases. She chose Alzheimer’s disease as her case study,” Dr. Karlaiwsh writes. “Lock soon discovered that she had stepped into a far more complex and controversial situation than she had anticipated. ‘Among experts,’ she observed, ‘the very category of AD [Alzheimer’s disease] was being subjected to questioning and possibly category fragmentation or reshuffling was in the air, making for a plethora of unknowns.’ Lock set out to explore these unknowns.”
You can read the full book review at Health Affairs.org
A recent article in National Geographic ponders the questions: Can Alzheimer’s disease be predicted? And if it could, would you want to take the test?
With the release of three new studies suggesting that it may become possible to diagnose Alzheimer’s before symptoms appear, these questions have become more relevant. The studies share the potential to “help us understand the early stages of the disease,” says Dean Hartley, director of science initiatives for the Alzheimer’s Association—and to improve treatment.
However, because the current options for treating the disease are limited, the question of wanting to take a test to find out one’s risk can be complicated.
“If someone told me that there is a great test for someone like me, I wouldn’t want it,” says Jason Karlawish, professor of medicine, medical ethics, and health policy at the University of Pennsylvania Perelman School of Medicine, and Associate Director of the Penn Memory Center. “It would be knowledge that would add to my level of existential anxiety.”
You can read the full article at National Geographic.com.
There is growing recognition that insulin resistance, type II diabetes and other features of the metabolic syndrome are associated with brain disorders including Alzheimer’s disease and other neurodegenerative dementias. In a study led by Steven Arnold, MD, Director of the Penn Memory Center, researchers found that a high fat diet is bad for the brain (at least in mice), causing brain insulin resistance, lower densities of synapses and impaired memory. The researchers fed mice a very high fat diet for 17 days or a moderate high fat diet for 8 weeks and examined changes in brain insulin signaling responses. You can read the study here.
In January, Medicare officials updated the agency’s policy manual so that the program will now pay for physical therapy, nursing care and other services for beneficiaries with chronic diseases like Alzheimer’s disease in order to maintain their condition and prevent deterioration. Unfortunately, beneficiaries were not necessarily informed about this important change.
“Medicare officials were required to inform health care providers, bill processors, auditors, Medicare Advantage plans, the 800-MEDICARE information line and appeals judges — but not beneficiaries,” the New York Times New Old Age Blog reported on March 25, 2014.
The change may have the most far-reaching impact on seniors who want to avoid institutional care. People with chronic conditions may be able to get the care they need to live in their own homes for as long as they need it, Mary Murphy, associate director at the Center for Medicare Advocacy said, if they otherwise qualify for coverage.
You can read the full article here.
Pam Belluck of the New York Times reported yesterday on a series of studies which might offer a clue into the mystery of “Why do some people whose brains accumulate the plaques and tangles so strongly associated with Alzheimer’s not develop the disease?”
A series of studies by Harvard scientists suggests a possible answer, one that could lead to new treatments if confirmed by other research. The memory and thinking problems of Alzheimer’s disease and other dementias, which affect an estimated seven million Americans, may be related to a failure in the brain’s stress response system, the new research suggests. If this system is working well, it can protect the brain from abnormal Alzheimer’s proteins; if it gets derailed, critical areas of the brain start degenerating.
Read the full article here.
Alzheimer’s takes a disproportionate toll on women, according to a report released Wednesday from the Alzheimer’s Association. Women are far more likely to develop the fatal disease than men: one in six women over 65 will get it during their lifetime, compared with one in 11 men. And, not surprisingly, women are more likely to be caregivers for someone with Alzheimer’s, and to pay a bigger personal and professional price for that care than men do.
Read the USA Today article here.
Jonatha Brooke’s musical play, “My Mother Has 4 Noses,” is a mother-daughter, end-of-life love story complicated by religion and dementia. Every Saturday matinee in March includes a Talkback session with experts in the field of Alzheimer’s, dementia, and caregiving.
Jason Karlawish,MD, Associate Director of the Penn Memory Center, joins Jonatha on March 15, 2014 at 2pm at the Duke on 42nd Street in New York City.
The New York Times says of the play, “In a haunted and haunting play with music, Ms. Brooke is bearing witness, recounting the descent into dementia of her mother, Darren Stone Nelson, and her experience of caring for Ms. Nelson in the last years of her life.”
And the New York Post writes: “Jonatha Brooke’s affectionate, well-crafted, surprisingly funny new musical, “My Mother Has Four Noses,” is well worth your attention.”
NPR reported on an experimental blood test that can identify people in their 70s who are likely to develop Alzheimer’s disease in the next two or three years. Dr. Jason Karlawish, Associate Director of the Penn Memory Center, was interviewed on the ethical implications of such a test.
The knowledge of one’s risk of Alzheimer’s can be a good thing, says Dr. Karlawish, and that has been shown among people who chose to be tested for a gene that increases the risk of Alzheimer’s, he adds.
“Knowing their risk of developing cognitive impairment is very relevant to making plans around retirement and where they live,” he says. “So there is certainly a role for knowing that information.”
But the biggest concern about Alzheimer’s testing probably has to do with questions of stigma and identity, Dr. Karlawish says. “How will other people interact with you if they learn that you have this information?” he says. “And how will you think about your own brain and your sort of sense of self?”
You can read the full story at NPR.org.
Jason Karlawish, MD was featured in a Hot Topics: Issues in Neurology video segment on Alzheimer’s disease. Dr. Karlawish discusses treatment in Alzheimer’s patients who are suffering from agitation and the value of MRI and PET imaging.
You can view the video here:
In 1984 the National Institute on Aging created the first Alzheimer Disease Centers. In the 30 years since, the ADC program has expanded to include 27 centers across the U.S. A recent investigation evaluating the performance of the ADCs was conducted by a team of researchers including John Q. Trojanowski, MD, PhD, Director of the Alzheimer’s Disease Core Center at the University of Pennsylvania. The results were published on February 10, 2014 in JAMA Neurology.
The group collected every article published by ADC investigators between 1984 and 2012 and used social network analysis to analyze co-publication networks. They examined the frequency of collaborations and found that “the collaborations established within the context of the ADC program are increasingly inter-institutional, consistent with the overall goal of the program to catalyze multi-center research teams.”
“It seemed obvious to many of us that the NIA funded AD Center network was having a powerful impact on AD research, care, policy and public awareness, so it was gratifying to show in this study using a novel social network analysis that indeed, the ADCs foster high-impact inter-ADDC collaborative research,” said Dr. Trojanowski.
You can read the study here.
Jane Brody’s Personal Health column in the New York Times on February 17 brings light to the challenges and stresses of the Alzheimer’s caregiver. Read more here:
Pennsylvania Secretary of Aging Brian Duke presented the Pennsylvania State Plan for Alzheimer’s Disease and Related Disorders on February 7, 2014 to Governor Tom Corbett. The plan provides recommendations to the Governor on addressing the epidemic of Alzheimer’s disease and related disorders in the commonwealth. The report contains seven recommendations that were designed to address awareness, private and public partnerships, brain health, care and early diagnosis, family and caregiver support, healthcare delivery and workforce and research. To view the Pennsylvania State Plan for Alzheimer’s Disease and Related Disorders, click here.
The Michael J. Fox Foundation for Parkinson’s Research (MJFF), the Alzheimer’s Association and The W. Garfield Weston Foundation have joined forces to to inspire scientists to envision research projects that will use existing data and/or biological samples from two large-scale biomarker studies: the Parkinson’s Progression Markers Initiative (PPMI) and the Alzheimer’s Disease Neuroimaging Initiative (ADNI).
The three organizations have created and funded a new research grant program — Biomarkers Across Neurodegenerative Diseases — that will support initiatives including those that:
- analyze datasets to test hypotheses related to aging and neurodegenerative disorders;
- seek to identify panels or pathways that may play a role in disease mechanisms, such as around inflammation;
- pursue shared or disparate biochemical markers of disease risk, onset or progression
Although Parkinson’s and Alzheimer’s are distinct conditions, mounting evidence shows possible links between the genetics and brain changes associated with them. For example, analysis from PPMI has shown that levels of a protein implicated in Alzheimer’s disease (amyloid-beta) are lower in the cerebrospinal fluid of individuals with Parkinson’s compared to individuals without Parkinson’s. In addition, postmortem studies have found heightened load of amyloid-beta in the brains of some people with Parkinson’s and increased presence of a Parkinson’s-implicated protein (alpha-synuclein) in some people with Alzheimer’s.
Read more about the new initiative here.
The New York Times reported that the National Institutes of Health, ten drug companies and seven nonprofit organizations have initiated a partnership intended to speed up development of drugs to treat Alzheimer’s disease, Type 2 diabetes, rheumatoid arthritis and lupus.
Participants in this five-year, $230 million effort will share data, meet regularly and work together to determine which findings are likely to lead to effective treatments. Their findings and data will be made publicly available.
The project is unique, said Dr. Francis S. Collins, director of the National Institutes of Health.
“We are getting together in a way that has not happened before,” Dr. Collins said. “We are bringing scientists from different perspectives into the same room. They will leave their egos at the door, leave their affiliations at the door.”
“This is the type of ADNI-like partnership many of us have seen an urgent need for, and I am excited Francis Collins has made this happen,” said John Q. Trojanowski, MD, PhD, Co-Director, Center for Neurodegenerative Disease Research (CNDR) and Director, Alzheimer’s Disease Core Center at the University of Pennsylvania.
The goal of the partnership is to find new drug targets: molecules that can be attacked in order to stop or slow a disease. The Alzheimer’s initiative also aims to find reliable molecular signals of whether dementia is progressing, so that new drugs can be tested early enough to avert irreversible brain damage.
Read the full New York Times article here.
The Department of Psychiatry at the Perelman School of Medicine, University of Pennsylvania, presents Thomas R. Insel, M.D., Director, National Institute of Mental Health, on February 6, 12:00pm – 1:00pm in the BRB II/III Auditorium. His topic will be “Rethinking Mental Illness.” More information at http://www.med.upenn.edu/psych/rounds.html.
President Obama has signed a funding bill containing an unprecedented $122 million increase for Alzheimer’s research, education, outreach and caregiver support.
The new federal funding allocated for Alzheimer’s disease includes a $100 million increase for the National Institute on Aging for Alzheimer’s research, which will be added to what the National Institutes of Health (NIH) estimates will be $484 million in Alzheimer’s research funding across NIH in fiscal year 2013. A further $3.3 million has been provided to support Alzheimer’s caregivers, $4 million to train health professionals on issues related to Alzheimer’s disease, $10.5 million to expand the home and community based caregiver services and $4.2 million for outreach activities to raise awareness. Additionally, the National Institutes of Health’s BRAIN Initiative will receive $30 million to support brain research that could impact several diseases, including Alzheimer’s.
Acclaimed singer/songwriter Jonatha Brooke was at the Penn Memory Center recently for an interview with Jason Karlawish, MD for our Making Sense of Alzheimer’s disease project. Jonatha has a new musical play – My Mother Has Four Noses (#4noses)- opening on February 14 at the Duke on 42nd Street theater in NYC.
Her one-woman show weaves story and song together to tell the experiences of caring for her mother, who suffered from Alzheimer’s, during the final two years of her life. Click here to see her post on Facebook after her interview with Dr. Karlawish.
AARP’s radio production, the 2 Boomer Babes Radio Hour, is a weekly feature that highlights a variety of issues relevant to the boomer generation, with discussion topics ranging from caretaking of elderly parents, to health, popular culture, and relationships. Hosts Kathy Bernard and Barbara Kline recently produced several segments on Alzheimer’s disease including interviews with Jason Karlawish, MD, Associate Director of the Penn Memory Center, on the November 10 and December 29 programs. Listen to these and other Boomer shows here.
United States House and Senate negotiators unveiled an “omnibus” bill to fund the federal government that includes $122 million in additional Alzheimer’s funding, the largest-ever increase in federal funding for Alzheimer’s research and care programs. Learn more about how you can encourage passage of the bill at the Alzheimer’s Association.
The January 14, 2014 issue of the Philadelphia Tribune features a story on Raymond W. Holman, Jr.’s “Portraits of Alzheimer’s Caregivers” exhibit on display at the Perelman Center for Advanced Medicine through February. Reporter Ayana Jones interviewed Dr. Jason Karlawish, Associate Director of the Penn Memory Center, about the exhibit.
“We heard about (Mr. Holman’s) work from coverage in other media,” Dr. Karlawish said. “We were deeply intrigued because it’s great art that is very relevant to our mission, which is making sense of Alzheimer’s disease, dementia and related disorders,” he added. “We are particularly impressed and excited that he focused on people who are often underrepresented and underappreciated in the world of Alzheimer’s disease and dementia – namely individuals of African American ancestry and people who are working and living in a caregiving role.”
Read the full article in the Philadelphia Tribune here.
In an effort to develop a coordinated and collaborative approach to the development of dementia research studies and treatments, the UK hosted a G8 summit on dementia on December 11, 2013 in London. The gathering of health and science officials, researchers, pharmaceutical companies and senior industry figures aimed to identify an international approach to dementia research and policy. Topics included improving the quality of life for people affected by dementia; improving the prevention and treatment of dementia; and developing ways to stimulate greater investment and innovation in dementia research.
The summit was broadcast live via the G8 Dementia webpage here.
The Group of Eight (G8) is a forum for the governments of eight of the world’s largest national economies and includes the United States, France, Germany, the United Kingdom Italy, Japan, Canada and Russia.
Researchers at the Perelman School of Medicine at the University of Pennsylvania have found that available evidence does not support an association between statins and memory loss or dementia. The new study, a collaborative effort between faculty in Penn Medicine’s Preventive Cardiovascular Program, the Penn Memory Center, and the Penn Center for Evidence-Based Practice, will be published in Annals of Internal Medicine.
The research team conducted a systematic review of the published literature and identified 57 statin studies reporting measures of cognitive function. Senior study author Emil deGoma, MD, assistant professor of Medicine and medical director of the Preventive Cardiovascular Program at Penn. and colleagues found no evidence of an increased risk of dementia with statin therapy. In fact, in cohort studies, statin users had a 13 percent lower risk of dementia, a 21 percent lower risk of Alzheimer’s disease, and a 34 percent lower risk of mild cognitive impairment compared to people who did not take statins. Cognitive test scores were not adversely affected by statin treatment in randomized controlled trials.
“Overall, these findings are quite reassuring. I wouldn’t let concerns about adverse effects on cognition influence the decision to start a statin in patients suffering from atherosclerotic disease or at risk for cardiovascular disease. I also wouldn’t jump to the conclusion that statins are the culprit when an individual who is taking a statin describes forgetfulness. We may be doing more harm than good if we withhold or stop statins – medications proven to reduce the risk of heart attack and stroke – due to fears that statins might possibly cause memory loss,” said Dr. deGoma.
To read more, click here.
Jason Karlawish, M.D., Associate Director of the Penn Memory Center, is quoted in the December 10, 2013 issue of Scientific American. The article, How Brain Scans Might Change the Way Doctors Diagnose Alzheimer’s, discusses the development over the past 10 years of sophisticated brain scans that can estimate the amount of plaque in the brain, and an upcoming clinical trial that will investigate whether giving an experimental drug as soon as the scans detect the formation of plaques can slow or halt the development of Alzheimer’s. That trial, the A4 Study, aims to screen 3,000 healthy senior citizens to identify 1,000 amyloid-positive individuals who will receive either a drug therapy for Alzheimer’s called solanezumab or a placebo for three years. The Penn Memory Center is one of the 60 sites where the study will take place. To read the full Scientific American article, click here.
The online issue of Neurology®, the medical journal of the American Academy of Neurology, reports that speaking a second language may delay the onset of certain types of dementias.
The study found that people who spoke two languages developed dementia four and a half years later than people who only spoke one language.
“Our study is the first to report an advantage of speaking two languages in people who are unable to read, suggesting that a person’s level of education is not a sufficient explanation for this difference,” said study author Suvarna Alladi, DM, with Nizam’s Institute of Medical Sciences in Hyderabad, India.
“Speaking more than one language is thought to lead to better development of the areas of the brain that handle executive functions and attention tasks, which may help protect from the onset of dementia.”
Read more at Neurology®.
More evidence is mounting that engaging in physical exercise leads to a healthier brain. At the Society for Neuroscience meeting currently underway in San Diego, researchers are reporting that “physical exercise can ease depression, slow age-related memory loss and prevent Parkinson-like symptoms.”
If you’re just playing Sudoku or challenging yourself with a crossword puzzle, you may not be doing enough.
“We definitely have more evidence for exercise,” said Teresa Liu-Ambrose of the University of British Columbia. Liu-Ambrose moderated a panel of scientists who presented studies showing that physical activity offers a wide range of brain benefits.
One reason exercise provides mental benefits may be that it actually requires the brain to do a lot of work, Robin Callister of the University of Newcastle said. The brain is coordinating complex movements when you go on a run, she said. Team sports or group exercises also activate parts of the brain devoted to social interactions.
Read more at NPR.
The 7th Annual Penn Memory Center Thank You Breakfast drew a full house to the Inn at Penn’s Woodlands Ballroom on Saturday, October 26, 2013. The annual invitation-only breakfast is held each year to thank research participants for their contribution to Penn’s Alzheimer’s disease research.
Over 200 research participants, their family members, guests and PMC staff gathered to enjoy a full breakfast buffet before hearing presentations on the latest updates in Alzheimer’s disease and the results of Alzheimer’s disease research done at the Penn Memory Center.
John Trojanowski, MD, PhD, Director of Penn’s Alzheimer’s Disease Core Center; Steven E. Arnold, MD, Director of the Penn Memory Center; Jason Karlawish, MD, Associate Director of the Penn Memory Center; and Felicia Greenfield, Associate Director for Clinical and Research Operations at the Penn Memory Center, 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 the current and future state of Alzheimer’s disease research to the effects of antihistamines on memory.
The Food and Drug Administration approved a radioactive imaging chemical from General Electric to help screen patients for Alzheimer’s disease and dementia. The drug, Vizamyl, is an injection of radioactive material designed to highlight abnormal brain plaque in medical imaging scans.
Vizamyl works by binding to the plaque and creating images that show up on PET scans of the brain. A negative scan means there is little plaque and the cause of dementia is probably not Alzheimer’s, according to an FDA release. A positive scan means the patient has at least some plaque, but does not mean they definitely have Alzheimer’s.
The injection is intended as one tool to help physicians identify the cause of patient’s cognitive decline.
Read the full Associated Press article here.
A new study published in JAMA Neurology suggests that older adults who don’t sleep well have more brain beta-amyloid plaques, which can be indicators of Alzheimer’s disease.
The finding doesn’t prove that not getting enough sleep causes the build-up of beta-amyloid plaques and leads to dementia rather than the other way around. But, the study’s lead author, Adam Spira from the Johns Hopkins Bloomberg School of Public Health said, “It’s exciting that our findings … may point to sleep disturbance as something that can be a modifiable risk factor that can be leveraged to prevent Alzheimer’s disease.”
“We’ve known for a long time that people with Alzheimer’s disease have really disturbed sleep patterns,” Spira told Reuters Health. “People have wondered, well, is it possible that poor sleep is actually leading to cognitive decline?” In the new study, “We were able to look under the hood and see what’s going on in the brain,” he said.
Read the full Reuters Health article here.
The BBC reported on the discovery of a chemical that prevents the death of brain tissue. In tests on mice, the Medical Research Council Toxicology Unit at the University of Leicester showed brain cell death from prion disease could be prevented.
Researchers used a compound to prevent the natural defense mechanisms that are built into brain cells from kicking in when a virus attacks the brain cell. The study, published in Science Translational Medicine, showed mice with prion disease developed severe memory and movement problems. Mice given the compound showed no sign of brain tissue wasting.
Lead researcher Prof Giovanna Mallucci said of the mice: “They were absolutely fine, it was extraordinary. What’s really exciting is a compound has completely prevented neurodegeneration and that’s a first. This isn’t the compound you would use in people, but it means we can do it and it’s a start.” The compound did show signs of side effects including an impact on the pancreas; the treated mice developed a mild form of diabetes and lost weight.
Jason Karlawish, M.D., Associate Director of the Penn Memory Center, cautioned that studies done on mice don’t necessarily translate into benefits for humans.
“Many studies of treatments in mice have been spectacular, only to fail in man. So, this finding is a bend in the road, but not a turning point,” Dr. Karlawish said.
To read the full BBC report, click here.
The Robert Wood Johnson Foundation Human Capital Blog features a post written by Dr. Jason Karlawish, Associate Director of the Penn Memory Center, exploring personalized medicine for the seemingly healthy brain that is at risk for neurodegenerative dementias.
“Prescribe the right drug to the right patient at the right time” is not a new medical practice, but when a biomarker—that is, a measure of disease pathophysiology—or a gene makes this decision, that is a radically new medical practice. The promise of personalized medicine is that biomarker and gene driven algorithms will do much of the work of medicine. By predicting patients’ future health and the outcomes of an intervention, they will guide what doctors recommend to their patients. Like the theory of evidence-based medicine, personalized medicine promises a more objective, efficient and precise medical practice.
Read the full blog post here
A leading group of Alzheimer’s researchers contends that, as biomarkers to detect signals of the disease improve at providing clinically meaningful information, researchers will need guidance on how to constructively disclose test results and track how disclosure impacts both patients and the data collected in research studies. A survey conducted by a group including experts from the Perelman School of Medicine at the University of Pennsylvania found that a majority of Alzheimer’s researchers supported disclosure of results to study participants. The study is published online in Neurology.
“While this is not a call to immediately tell subjects their biomarker results, it does show that the field is moving to a point where experts want to share valid and meaningful results with participants,” said co-senior author Jason Karlawish, MD, professor of Medicine and Medical Ethics and Health Policy and Associate Director of the Penn Memory Center. “As we gain more data on the predictive abilities of these measurements, we will need models and methods to effectively reveal results.”
Alan J. Lerner, MD’s editorial, Amyloid imaging – the court of public opinion, in the same issue of Neurology, stated that “human amyloid imaging is one of the great recent
translational medicine stories.” Lerner found that important issues were raised by the study’s findings.
“Revision of research disclosure policies in an age of expanded information access has to be considered, but should be weighed against protecting participants from harm from worrisome but incomplete prognostic information,” Lerner wrote. “Lay people often do not understand the meaning or context of disclosed information, so simple disclosure of data needs to be fashioned into usable information. Disclosing results of amyloid imaging may require skills that current clinicians lack, ” he continued.
The University of Pennsylvania was the site for a Pennsylvania Alzheimer’s Disease Planning Committee hearing on Thursday, August 15. The committee heard more than 3 hours of testimony from politicians, researchers, caregivers, advocates, and others affected by Alzheimer’s disease.
Alzheimer’s disease accounts for 50 percent to 70 percent of cases of dementia, said Steven Arnold, who directs the Penn Memory Center. Other common types are vascular, frontotemporal, and Lewy body dementia. People with Parkinson’s disease often develop a form of dementia. Arnold emphasized that a host of risk factors for dementia – poor education, head injuries, smoking, alcoholism, obesity, heart disease – are preventable and would be good targets for public health campaigns.
Jason Karlawish, Associate Director of the Penn Memory Center focused on the financial problems of older people with cognitive problems, since they are easy targets for fraud and abuse. He said that the state should strengthen laws meant to protect adults from exploitation and that the financial services industry knows it is on the “front lines” of identifying people with dementia. “They’re bothered about this and they want guidance,” he said.
Read the full Philadelphia Inquirer article here
Cognitively normal adults who learn that they are at high risk for developing Alzheimer’s disease do not, as some clinicians fear, spiral downward into depression, anxiety, or distress, investigators reported at the Alzheimer’s Association International Conference 2013.
An analysis of data from three randomized trials testing the effects of genetic testing disclosure found that that cognitively normal adults who learned that they were homozygous for the high-risk apolipoprotein E epsilon-4 allele (APOE epsilon-4) had a spike in test-specific distress score until about 6 months after learning the results but returned to levels similar to those of heterozygous carriers, reported Dr. Jason Karlawish, Associate Director of the Penn Memory Center, and his colleagues.
“While there is no question that learning that you’re at higher risk causes some test-specific distress, this further validates that there is no long-term, sustained psychological distress,” Dr. Karlawish said in an interview with Clinical Neurology News. Read more here
As we age, time often seems to pass more quickly than when we were young. But is this just a cognitive illusion? Richard A. Friedman, a professor of clinical psychiatry and the director of the psycho-pharmacology clinic at the Weill Cornell Medical College explored the concept of how we perceive the passage of time in an opinion piece, Fast Time and the Aging Mind, in the July 20, 2013 New York Times. Our perception of time is influenced by many factors, he says, including emotions, attention, and memory. And if you want to slow down time, he says, become a student again and learn something new or that necessitates real effort. Read more here
Dr. Steven Arnold, Director of the Penn Memory Center and Dr. Gary Landreth, Professor of Neurosciences and Neurology and Director, Alzheimer’s Research Laboratory, Case Western
Reserve University School of Medicine, will be guests on USAgainstAlzheimer’s Alzheimer’s Talks “Could we treat Alzheimer’s with existing drugs?” teleconference on Wednesday, July 24 from 3:00 – 4:00 pm EST.
Dr. Arnold is conducting research into drug repurposing with a diabetes drug and Dr. Landreth is researching alternate uses for an existing cancer drug. They will be introduced by Dr. Guy Eakin, Vice President of Scientific Affairs at BrightFocus Foundation, a nonprofit which funds research to eradicate diseases of mind and sight, including some of this research.
Alzheimer’s Talks is a free monthly teleconference series to help individuals better understand Alzheimer’s. This call is made possible by the generous support of Emanuel J. Friedman Philanthropies.
To register for Alzheimer’s Talks click here
The Alzheimer’s Association’s 2013 Alzheimer’s disease Facts and Figures report explains that older African Americans are probably about twice as likely to have Alzheimer’s and other dementias as older Caucasians. A new study presented at the Alzheimer’s Association International Conference in Boston says socioeconomic disparities account for the high Alzheimer’s prevalence in African Americans.
The study at the University of California, San Francisco and the San Francisco Veterans Affairs Medical Center surveyed about 3,000 black and white elderly people over a 12 year period. Though the black participants seemed to show more of a propensity to develop dementia, the researchers found the difference was not statistically significant after adjusting for patients’ income levels.
Dr. Kristine Yaffe, who led the study, said in a statement that the findings suggest researchers should better control for socioeconomic factors in future studies about demographics of aging populations.
These findings come on the tail of other recent research showing no genetic differences explaining the disease’s racial disparity.
Read the full story at The Boston Globe
On July 9, the Senate Labor, Health and Human Services, and Education, and Related Agencies Appropriations Subcommittee approved a fiscal year 2014 bill that includes funding for the National Institutes of Health (NIH) and, more specifically, for Alzheimer’s disease. The bill states that, “Without a medical breakthrough to prevent, slow, or stop [Alzheimer's disease], the total payments for healthcare, long-term care, and hospice for people with Alzheimer’s and other dementias are projected to rise from $203 billion in 2013 to a staggering $1.2 trillion in 2050. This bill includes an $84 million increase for the National Institute on Aging, the NIH Institute with the primary responsibility for preventing, treating, and curing Alzheimer’s disease. The bill also includes $20 million for a new Alzheimer’s Disease Initiative that will strengthen dementia-capable long-term services and supports, assist caregivers of individuals with Alzheimer’s disease, and train healthcare providers on how to recognize the signs and symptoms of Alzheimer’s and manage the disease.”
The full Senate Appropriations Committee will meet on July 11 to review the bill. For more information on the bill, click here
In a June 24, 2013 article, “Before Night Falls: Alzheimer’s researchers seek a new approach,” The New Yorker interviews Reisa Sperling, MD, director of the Alzheimer’s clinical research center at Bringham and Women’s Hospital and Massachusetts General Hospital in Boston. The article outlines a new study, the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s Disease Trial (or A4 Trial), which Dr. Sperling and Paul Aisen, MD, of the University of California, San Diego will jointly oversee. The study, funded by the National Institutes of Health, aims at targeting beta-amyloid plaques in patients with pre-clinical Alzheimer’s disease in order to slow the accumulation of these plaques in the brain, and the symptoms of Alzheimer’s, before they start.
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On June 17, 2013 the U.S. Department of Health and Human Services (HHS) released the 2013 Alzheimer’s disease plan update. The initial “National Plan to Address Alzheimer’s Disease” was released in May 2012 under the 2011 National Alzheimer’s Project Act (NAPA). President Obama signed the National Alzheimer’s Project Act to support Alzheimer’s research and help individuals and families affected by Alzheimer’s disease. The National Plan to Address Alzheimer’s disease was developed by experts in Alzheimer’s disease and aging to discover techniques to prevent and treat Alzheimer’s disease by 2025, improve care for patients, enhance public awareness, and increase support for caregivers. The 2013 update to the National Plan highlights completed goals over the past year in addition to recommendations for additional action steps.
Highlights in the fight against Alzheimer’s disease this past year include the National Institutes of Health organized the Alzheimer’s Disease Research Summit in May 2012 to bring together national and international experts, researchers, and advocacy groups to develop suggestions on how to best advance research. Several new Alzheimer’s research projects were funded in areas including clinical trails, genetic sequencing, and development of new cellular models for Alzheimer’s disease. These projects can be reviewed in the 2011-2012 Alzheimer’s Disease Progress Report. The U.S. Department of Health and Human Services launched a website, www.alzheimers.gov, to spread public awareness and provide information and resources to people with Alzheimer’s and their caregivers. This website reached a wide audience, with more than 200,000 visits in the first ten months.
The 2013 update to the National Plan addresses the various challenges presented by Alzheimer’s disease and the update identifies actions to overcome these challenges. Specific additional actions recommended in the update include a cohesive Alzheimer’s disease training curriculum for primary care providers, assistance for families and communities affected by Alzheimer’s disease through legal services, and improvement in dementia services within state and local health networks.
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.”
Medical historians may be familiar with the story of Dr. William Beaumont, but Jason Karlawish, MD, casts it in a new light in his novel, Open Wound: The Tragic Obsession of Dr. William Beaumont. The story is fascinating on many levels, but it is Karlawish’s portrayal of Beaumont’s unstoppable, desperate, and almost dangerous ambition that takes center stage in this engaging historical account.
As the Alzheimer’s disease (AD) field moves closer to using genetic and biomarker data to identify people at risk, researchers are urgently trying to tackle whether and how to disclose that information to people in both routine clinical care and research settings. This past February, the Alzheimer Research Forum, an online scientific knowledge base for Alzheimer’s disease, published a detailed account of the issues involved and ongoing studies aimed at these goals. At the 2012 Alzheimer’s Association International Conference in Vancouver, three of the featured researchers updated attendees on their projects at a plenary session dedicated to the topic.
One topic of discussion at the AAIC session was the questions of whether it is psychologically harmful to divulge ApoE4 carrier status, which is associated with a higher risk of Alzheimer’s disease, to cognitively normal people. Jason Karlawish, MD, explored perhaps an even more contentious issue of whether doctors or researchers should reveal plaque status to cognitively normal people, as research on whether cognitively normal people with plaque progress to Alzheimer’s disease is at an earlier stage. “We have great concern that it may cause despair,” said Dr. Karlawish.
Washington Post – “Aging is not a mild form of dementia,” says cellular neurobiologist John Morrison, who specializes in aging. Until recently, many scientists thought brain cells died as we aged, shrinking our brains and shedding bits of information that were gone forever. Newer findings indicate that cells in disease-free brains stay put; it’s the connections between them that break. With this new perspective has come an explosion of research into how we can keep those connections, and our brain function, intact for longer.
Researchers from the Perelman School of Medicine at the University of Pennsylvania found a new way of diagnosing and tracking Alzheimer’s disease, using an innovative magnetic resonance imaging (MRI) technique called Arterial spin labeling (ASL) to measure changes in brain function. The team determined that the ASL-MRI test is a promising alternative to the current standard, a specific PET scan that requires exposure to small amounts of a radioactive glucose analog and costs approximately four-times more than an ASL-MRI. Two studies now appear in Alzheimer’s and Dementia: The Journal of the Alzheimer’s Association and Neurology. “In brain tissue, regional blood flow is tightly coupled to regional glucose consumption, which is the fuel the brain uses to function. Increases or decreases in brain function are accompanied by changes in both blood flow and glucose metabolism,” explained John A. Detre, MD, professor of Neurology and Radiology at Penn, senior author on the papers, who has worked on ASL-MRI for the past 20 years. “We designed ASL-MRI to allow cerebral blood flow to be imaged noninvasively and quantitatively using a routine MRI scanner.”
American Medical News reports that one-third of physician visits include at least one family member in the exam room. Even as the push toward the patient-centered medical home stresses the invaluable role that families can play in improving compliance and health outcomes, the presence of a relative raises a host of complicated issues for physicians to navigate. “Now you’ve got potentially two patients in the room,” says Jason Karlawish, MD, professor of Medicine and Medical Ethics. “You even have a kind of third patient, which is the relationship between the family member and the patient. If you ignore that, you ignore it at your own peril.” One step to making the interaction with patients’ relatives a positive one is to assess why they came along, says Dr. Karlawish, a geriatrician. “Ask questions,” he says. “Just as you ask the patient for their chief complaint, you can turn to the family member and say, ‘And you, is there anything in particular that you wanted to bring up?’
Aging Well looks at challenges primary care physicians face when coordinating elders’ care with other physicians who also treat the patient. John Bruza, MD, an associate professor of Geriatric Medicine in the Perelman School of Medicine, says that at Penn all of the health network’s subspecialties use the same EHR system. This has made the management of some highly complex patients much easier. “It facilitates almost instantaneous communication with providers,” says Bruza. In fact, that kind of coordination works so well among complex patients—those seeing multiple doctors on a regular basis—that Bruza says he may encourage certain patients to reconsider an outside specialist they’re seeing in order to try to keep everything within the same health system or network. “That’s not something I’d recommend for the majority of my patients but for those that are quite complex, I might suggest they consider it,” he says.
Aging Well article
AlzForum covers new research from the laboratory of Virginia Lee, PhD, director of the Center for Neurodegenerative Disease Research. A major challenge of studying diseases marked by intracellular protein aggregates is getting those pesky clumps to form in the lab under anything resembling realistic circumstances. A study in the October 6 issue of Neuron takes Parkinson’s disease research a step forward in this direction. The Penn team developed a cell model that uses preformed α-synuclein fibrils to induce Lewy body pathology, synaptic dysfunction, and death in wild-type mouse neurons. “The fact that you can take some fibrils, toss them into primary neuron cultures, and recapitulate pathology you see in PD patients suggests you have a simple but powerful system for studying the consequences of α-synuclein pathology in a dish,” said Lee.
The possibility that anesthesia and surgery produces lasting cognitive losses has gained attention over past decades, but direct evidence has remained ambiguous and controversial. Now, researchers at the Perelman School of Medicine at the University of Pennsylvania provide further evidence that Alzheimer’s pathology may be increased in patients after surgery. “We have long sought a clearer picture of the true impact of anesthesia and surgery on the central nervous system,” said lead study author Roderic Eckenhoff, MD, Austin Lamont Professor of Anesthesia at Penn. “Although not definitive, this human biomarker study gives some credibility to the notion that anesthesia and surgery produce an inflammatory insult on the brain and accelerate chronic neurodegenerative diseases like Alzheimer’s.”
New research from the Perelman School of Medicine adds to the growing evidence that anesthesia and surgery may be associated with the progression of chronic brain diseases, particularly Alzheimer’s disease. “We have long sought a clearer picture of the true impact of anesthesia and surgery on the central nervous system,” study author Roderic Eckenhoff, MD, the Austin Lamont Professor of Anesthesia, said in a HealthDay article. “Although not definitive, this human biomarker study gives some credibility to the notion that anesthesia and surgery produce an inflammatory insult on the brain and accelerate chronic neurodegenerative diseases like Alzheimer’s,” Eckenhoff added.
USA Today – For people with type 2 diabetes, intense treatment doesn’t slow decline in thinking skills, a new study found. Super-strict blood sugar control actually appeared to increase study participants’ risk of death, the researchers found. People older than 70 with type 2 diabetes are twice as likely to suffer mental impairment as those without diabetes, researchers say. Intensively controlling blood sugar has been shown to reduce the odds of diabetes complications, such as vision, kidney and circulation problems, so it seemed likely that it might also slow any cognitive decline related to the condition.
USA Today – People with diabetes are at significantly higher risk of developing all types of dementia, including Alzheimer’s disease, finds a new study that bolsters previous research connecting the two illnesses. The study of more than 1,000 people in Japan found that 27 percent of those with diabetes developed dementia, compared to 20 percent of people with normal blood sugar levels. Further, the study showed that pre-diabetes — higher than normal blood sugar levels — also raised the risk of dementia.
Discover Magazine’s science blog “Not Exactly Rocket Science” mentions research published in Neuron from the Center for Neurodegenerative Disease Research, department of Pathology and Laboratory Medicine, about how small amounts of misshapened brain proteins in Parkinson’s disease can be taken up by healthy neurons and replicated within them to cause neurodegeneration. Laura Volpicelli-Daley, PhD, senior research investigator, and CNDR Director Virginia Lee, PhD, were both mentioned in the blog.