News & Events
Penn Memory Center News
Of all life’s day-to-day chores, managing finances is among the most cognitively demanding. Jason Karlawish, MD, co-director of the Penn Memory Center and professor of Medicine, Medical Ethics and Health Policy and Dan G. Blazer, MD, Ph.D – discuss how declines in financial capacity are among the first signs that an older adult is suffering from cognitive impairment, which means that not only doctors but the banking and financial services industries are also diagnosing it.
Alzheimer’s disease may cause different changes in the brain of African Americans than in white Americans of European descent, according to a study published in the July 15, 2015, online issue of the medical journal of the American Academy of Neurology. The research, conducted by Lisa L. Barnes at the Rush University Medical Center, suggests that African Americans are less likely than Caucasians to have Alzheimer’s disease alone and more likely to have other pathologies associated with dementia.
To read more, click here
Movie screening of “Still Alice” and discussion in partnership with the Delaware Valley Alzheimer’s Association at the The Jewish Federation of Greater Philadelphia. The Penn Memory Center will have a resource table to display information about how people can participate in Alzheimer’s disease research.
When: Thursday, July 16th 2015
Where: Jewish Federation of Greater Philadelphia, 2100 Arch Street
For more information about GenPhilly, click here
A study in the April 2015 issue of Alzheimer’s & Dementia led by researchers from University City College London and the U.S. – including David Wolk, MD, co-director of the Penn Memory Center – found that one in four persons under 60 did not report memory loss as a first sign of Alzheimer’s disease. The researchers analyzed data from the NIH supported NACC study – a national database of participants attending Alzheimer’s disease Center’s across the United States – to show these notable differences between how Alzheimer’s presents in older adults compared to younger adults.
In explaining the importance of the study, Dr. Wolk said “these findings that symptoms other than memory loss may be how the disease presents in younger adult are not only vital for helping to diagnose Alzheimer’s, they also suggest differences in how Alzheimer’s develops and progresses, differences that could have an impact on developing treatments.”
To read more, click here
Patty Jackson of 105.3WDAS recently interviewed Reisa Sperling, MD of Harvard Medical School and Stephanie Monroe, the director of African Americans Against Alzheimer’s Disease about the A4 Study. Sperling and Monroe addressed the need for older African Americans to get involved in the clinical trial. Listen to the interview below.
The A4 Study is actively recruiting participants at the Penn Memory Center. For more information, contact Study Coordinator Jessica Nuñez at 215-662-4379 or email@example.com
Keeping tabs on personal finances is not always a top priority. But in older adults, when that skill slips, it might indicate cognitive aging or a neurodegenerative disease. Jason Karlawish, MD, a professor of Medicine, Medical Ethics, and Health Policy shared with WHYY radio at the Institute of Aging’s annual retreat, which this year focused on financial security.
To listen, click here
According to a new study published in the online issue of Neurology, researchers found that seniors who consumed the most nutritious food had a nearly 25% reduction in the risk of memory decline compared to those with the least healthy diets.
To read more, click here
The National Institutes of Health released recommendations today that provide a framework for a bold and transformative Alzheimer’s disease research agenda. Developed at the recent Alzheimer’s Disease Research Summit 2015: Path to Treatment and Prevention, the highly anticipated recommendations provide the wider Alzheimer’s research community with a strategy for speeding the development of effective interventions for Alzheimer’s and related dementias.
To read more, click here
Convened by the National Adult Protective Services Association, the National Center for Victims of Crime and the International Network for the Prevention of Elder Abuse, in collaboration with national and international partners.
To register, click here
A Penn Institute on Aging retreat this week addressed cognitive aging and financial decision-making and what can be done to protect elders from fraud and abuse. Co-sponsored by the Penn Healthy Brain Research Center, the speakers included experts in dementia, brain research and age-friendly banking.
Studies show that the ability to perform simple math problems, as well as handling financial matters, are typically one of the first set of skills to decline in diseases of the mind, like Alzheimer’s. Research has also shown that even cognitively normal people may reach a point where financial decision-making becomes more challenging. A New York Times article explores this issue of cognitive decline and financial decision-making.
You can read the article here.
The New York Academy of Sciences podcast series on dementia is now available for download and features interviews with Penn Memory Center’s Jason Karlawish, MD.
The first episode of the five-part podcast series begins to answer questions such as: What is Alzheimer’s? How is it different from other forms of dementia? Is it an inevitable part of aging? The podcast series features interviews with leading dementia experts from multiple sectors: academia, health care, public policy, and beyond.
Every 67 seconds someone in the United States develops Alzheimer’s disease. More than 5 million Americans are living with the disease. Learn the facts. Watch the Alzheimer’s Association’s video “Alzheimer’s Disease Facts and Figures 2015″:
A Penn Medicine blog post looks at the Institute of Medicine (IOM) report on cognitive aging which was released last week.
Writer Lee-Ann Donegan says, “The subject of aging is something I’ve thought about a great deal this week, having just celebrated a milestone birthday. But the thing that gets me upset much more than my own aging, is the aging of my parents and older relatives. This week, the Institute of Medicine (IOM), an independent organization that advises the government and the public on health decisions, published a report on a relatively new concept known as “cognitive aging.” ”
Ms. Donegan spoke with Jason Karlawish, MD, acting co-director of the Penn Memory Center, about the report.
“The report differentiates the processes of cognitive aging from those of neurodegeneration,” says Dr. Karlawish, one of 16 authors of the report, all of whom are national leaders in aging research and practice.
In addition to explaining cognitive aging, the report also provides actionable steps supported by research that people can take to maintain cognitive health as they age.
Read the IOM’s entire report, Cognitive Aging: Progress in Understanding and Opportunities for Action.
The Institute of Medicine has released Cognitive Aging: Progress in Understanding and Opportunities for Action, a report on the public health dimensions of cognitive aging. The report, released on April 14, 2015, is timely. The U.S. population is rapidly aging and individuals are becoming more concerned about their cognitive health. Older adults view “staying sharp” as perhaps one of their most important health care goals.
Prepared by the Committee on the Public Health Dimensions of Cognitive Aging, the report assesses examined definitions and terminology, epidemiology and surveillance, prevention and intervention, education of health professionals, and public awareness and education.
Jason Karlawish, MD, associate director of the Penn Memory Center and director of the Penn Prevention Research Center’s Healthy Brain Research Center — a member of the CDC supported Healthy Brain Network dedicated to surveillance, education, awareness and empowerment that promotes brain health — was a member of the report committee.
“This report is a beginning,” Dr. Karlawish explained. “ Over the last 30 years we have made substantial progress in understanding the causes of neurodegeneration. Alzheimer’s disease has gone from a hidden disorder, to a front and center national concern. Now, we need to pay the same attention to cognitive aging.”
Cognitive aging is a process of gradual, ongoing, yet highly variable, changes in cognitive functions that occur as people get older. Age-related changes in cognition can affect not only memory but also decision-making, judgment, processing speed, and learning. “Among our key findings was that both human and animal models show how in cognitive aging, neurons are not working as well, but they’re not dying.” Dr. Karlawish noted that this is important because “Synapses may be sick, but there’s a chance they can get well again.”
The report’s findings and recommendations address steps individuals, health care professionals, communities and society can take to promote cognitive health:
- Increasing research and tools to improve the measurement of cognitive aging.
- Promoting physically activity; reducing and managing cardiovascular disease risk factors, including high blood pressure, diabetes, and smoking; and regularly discussing and reviewing with a health care professional the medications that might influence cognitive health.
- Expanding public communications efforts around cognitive aging with clear messages that the brain ages, just like other parts of the body; cognitive aging is not a disease; cognitive aging is different for every individual (there is wide variability across persons of similar age); some cognitive functions improve with age, and neurons are not dying as in Alzheimer’s disease (hence, realistic hope is inherent in cognitive aging); and finally, there are steps that patients can take to protect their cognitive health.
- Developing and improving financial programs and services used by older adults to help them avoid financial exploitation, optimize independence, and make sound financial decisions.
- Health care systems and health care professionals should implement interventions to insure optimal cognitive health across the life cycle including programs to avoid delirium associated with medications or hospitalizations.
- Determining the appropriate regulatory review, policies and guidelines for products advertised to consumers to improve cognitive health, particularly medications, nutritional supplements, and cognitive training.
The report, a slide set, and a four-page key point summary, are free and available for download at www.iom.edu/cognitiveaging.
Nature Medicine recently looked at efforts to improve patient access to results from clinical trials in which they’ve participated. In an April 7, 2015 article published online, writer Shraddha Chakradhar highlights the Penn Memory Center’s annual Thank You Breakfast for research participants, and spoke with Jason Karlawish, MD about the PMC’s efforts to loop patients back in to the research process.
Shraddha Chakradhar writes: Before instituting the breakfasts, Karlawish was struck by how participants viewed themselves in the research process. “Participants often used comparisons to being a research monkey or guinea pig and other nonhuman animals to describe their role in the research process,” Karlawish says. “It was as if their humanity was in some sense removed, but they were still willing to participate” in research, he adds.
You can read the full article here.
Steven E. Arnold, MD, director of the Penn Memory Center and David Wolk, MD, assistant director of the Penn Memory Center, both recently gave presentations at Surrey Services for Seniors in Devon, PA. Dr. Arnold’s presentation “Conundrums in Research on the Aging Mind” and Dr. Wolk’s presentation, “How Early Can we Diagnose Alzheimer’s Disease?” are available for viewing on YouTube. You can find the links below:
Surrey Services for Seniors is a non-profit organization offering comprehensive resources, services and activities in Broomall, Devon, Haverford and Media, PA. Their mission is to help older adults live at home with independence and dignity and continue as active members of the community. The PMC presentation series at Surrey continues in April and May:
Friday, April 17, 2015 from 9:30 a.m.– 11:00 a.m.
Cognitive Aging and Cognitive Fitness: a Proactive Approach, Dawn Mechanic-Hamilton, Ph.D.
How can we maximize our cognitive health as we age? We will review the changes expected with typical aging and how we can use compensatory strategies and changes in behavior to maintain cognitive health.
Friday, May 15, 2015 from 9:30 a.m. – 11:00 a.m
Caring for the Dementia Caregiver: Promoting self-care to achieve better outcomes for the person with dementia, Felicia Greenfield, LCSW
Family caregivers of people with dementia are at increased risk of adverse health including increased stress, anxiety and depression. Self-care for the caregiver is essential for improving not only the health and well-being of the caregiver, but of the person with dementia as well.
To register for these lectures, please call 610-647-9172. Lectures are free to the public and are held at:
Surrey Services for Seniors
60 Chestnut Avenue
Devon, PA 19333
The Institute on Aging will host its Visiting Scholars Series featuring Dr. Ann Marie Kolanowski on April 29, 2015. Dr. Kolanowski will present “Behavioral Health In The Nursing Home: Building A Web One Thread at a Time” at the University of Pennsylvania-Smilow Translational Research Center in the Rubenstein Auditorium at 3:00pm.
To register, please visit http://www.med.upenn.edu/aging/event-registration.shtml or call 215-898-7801. This event is free and open to the public; registration is requested.
The Smilow Translational Research Center is located at 3400 Civic Center Boulevard and the Rubenstein Auditorium is on the 1st floor. Smilow is adjacent to the Perelman Center for Advanced Medicine (PCAM). For driving directions and parking suggestions, please visit: http://www.pennmedicine.org/perelman/visitor_info/directions.html.
In a Philadelphia Inquirer Op-Ed column about novelist Harper Lee and the surprise news that a second novel of hers will soon be published, Jason Karlawish, MD points to the growing public-health problem of older adults with impaired cognition and the potential for exploitation and abuse that can arise. You can read the column here.
Registration has opened for the 2015 Frontotemporal Degeneration Caregiver Conference
The conference will be held on Friday, July 24, 2015 from 8am – 4:30pm in the Biomedical Research Building II/III Lobby and Auditorium.
The Penn Frontotemporal Degeneration Center invites you to attend a day-long conference for caregivers of persons with FTD and related conditions such as ALS and Corticobasal Degeneration. This conference is open to family caregivers,health professionals, scientists, students and others with an interest in FTD. This conference will include presentations by Dr. Murray Grossman and a team of experts in the field of FTD.
There is no charge to attend this event, but space is limited. Pre-registration is required via http://ftd.med.upenn.edu
Program time: 8:00-4:30 PM includes lunch and morning and afternoon refreshments.
Any questions or concerns can be directed to Christine Ray at firstname.lastname@example.org or 215-349-5873.
Congratulations to writer Deborah Fries, a contributor to Penn Memory Center‘s InSight newsletter and the www.makingsenseofalzheimers.org website! Deborah has been awarded 3rd Prize in the Mütter Museum of the College of Physicians of Philadelphia’s 25th Anniversary Poetry Competition.
Deborah’s poem – “About that coupling” – reflects on the throw of the dice that gave her two copies of the ApoE4 gene, putting her at a higher risk for developing Alzheimer disease. You can read the poem here.
Jason Karlawish, MD addressed the National Community Reinvestment Coalition’s (NCRC) Annual Conference – “Creating a Just Economy” – on March 27, 2015 with his presentation, “The Need for Financial Capability to Build Assets and Wealth.” NCRC promotes access to basic banking services to create and sustain affordable housing and job development in underserved communities. To read about the conference, click here.
Members of Penn Memory Center’s caregiver support group are featured in a Wall Street Journal article about the physical and emotional toll on caregivers as the disease progresses in their loved ones. PMC’s Felicia Greenfield, LCSW, leads the group. You can read the WSJ article here. For information about the support class, please click here.
Tonight, March 11, 2015, is the night for “The Aging Brain and Alzheimer’s Disease: Let’s Talk About Your Brain” at The Franklin Institute, 7:30 p.m. – 8:30 p.m.
John Trojanowski, M.D., Ph.D.
Director of the Institute on Aging and Co-Director, Center for Neurodegenerative Disease Research, University of Pennsylvania
Felicia Greenfield, L.C.S.W.
Associate Director for Clinical and Research Operations, Penn Memory Center, University of Pennsylvania
Staff from the Penn Memory Center will be on hand talk about our programs and services including PENN Care Management (our geriatric care management program), Cognitive Fitness, research opportunities and more. To register for this event, please call 215-448-1200.
For more information, click here.
You can read the Philadelphia Inquirer story here.
Listen live now on Radio Times to Jason Karlawish, associate director of the Penn Memory Center, and a discussion of end-of-life-issues and Alzheimer’s disease.
A National Institutes of Health public-private partnership aimed at accelerating Alzheimer’s disease drug development launched its “Big Data” portal on Wednesday, March 4, 2015, enabling researchers to share and analyze large biomedical datasets. The first wave of data was also released.
The venture brings together NIH, the U.S. Food and Drug Administration, and industry and academic scientists from a variety of disciplines with a goal of translate knowledge faster and more successfully into new therapies.
“This is an important initiative that could lead to novel targets for AD drug discovery,” says John Q. Trojanowski, MD, PhD, director of Penn’s Alzheimer’s Disease Core Center.
You can visit the The AMP AD Knowledge Portal here.
A film documenting the year in the life of a woman with Frontotemporal Degeneration will debut on Tuesday, March 10th at 8 pm on WHYY TV Philadelphia. View a short trailer of Looks Like Laury, Sounds Like Laury here.
The New York Times reports that Federal investigators have found evidence of overuse of psychiatric drugs by older Americans with Alzheimer’s disease, and are recommending that Medicare officials take immediate action to reduce unnecessary prescriptions.The findings were released on Monday, March 2, 2015 by the Government Accountability Office. You can read the report here and you can find the New York Times article here.
The Aging Brain and Alzheimer’s Disease: Let’s Talk About Your Brain
The Franklin Institute
March 11, 2015
7:30 p.m. – 8:30 p.m.
Join experts in aging and Alzheimer’s disease from the Penn Memory Center for an evening at the Franklin Institute. We’ll discuss the aging brain, Alzheimer’s disease and the impact it has on families and communities.
John Trojanowski, M.D., Ph.D.
Director of the Institute on Aging and Co-Director, Center for Neurodegenerative Disease Research, University of Pennsylvania
Felicia Greenfield, L.C.S.W.
Associate Director for Clinical and Research Operations, Penn Memory Center, University of Pennsylvania
Staff from the Penn Memory Center will be on hand talk about our programs and services including PENN Care Management (our geriatric care management program), Cognitive Fitness, research opportunities and more.
Free for Franklin Institute members
$5.00 for non-members
For more information, click here. To register for this event, please call 215-448-1200.
Dr. Jason Karlawish, associate director of the Penn Memory Center, will speak at the Hospital of the University of Pennsylvania Ethics Committee Educational Seminar on Thursday, March 5 at 4pm. The topic will be “Ethical Issues in the Care of Older Adults with Cognitive Impairment.”
To download a flyer, click here.
Title: Ethical issues in the care of older adults with cognitive impairment
Presenter: Jason Karlawish, MD
Series: Ethics Education Seminar Series 2014-2015
**How to Submit Your RSS Attendance Electronically**: We offer two methods for electronically submitting your attendance at Regularly Scheduled Series:
a) SMS text messaging or b) via the web.
For complete instructions on both processes, please visit:
If you’re like many Americans, getting a good night’s sleep can often seem out of reach. A new study in JAMA Internal Medicine shows that practicing mindfulness meditation can significantly improve the quality of one’s sleep. As Anahad O’Connor points out in The New York Times – Well – Health, this can be particularly relevant to Americans older than 55, about half of whom have some form of sleep trouble. You can read the JAMA study here.
A group of musicians, all suffering, to varying degrees, from dementia, Alzheimer’s or Parkinson’s disease, call themselves The Fifth Dementia and jam together twice a week. PBS NewsHour visited with the musicians and their families to learn how music has made a difference in their lives, by helping them stay active and connected. You can read the report and watch a video here.
The students of the Penn Neuroscience Graduate Group are hosting a Neuroscience Public Lecture entitled “Degeneration in the Aging Brain,” on Thursday, March 12th in Smilow Auditorium at 6:30pm. This FREE event will feature 3 fifteen minute TED-style talks from Penn Neuroscience faculty Virginia Lee, Alice Chen-Plotkin, and Harry Ischiropoulos. A reception will follow.
Registration and more information can be found here (https://nggglia.wordpress.com/neurolecture/).
Date: Thursday, March 12th, 6:30pm (Check-in begins at 6pm)
Location: Smilow Center for Translational Research Auditorium, 3400 Civic Center Blvd, Philadelphia, PA, 19104
A Silicon Valley health start-up, Neurotrack, is developing a computerized visual test that aims to accurately identify people at risk of Alzheimer’s. The test requires no language or motor skills; participants view images on a monitor while a camera tracks their eye movements. According to Scientific American, “The test draws on the research of Neurotrack co-founder Stuart Zola of Emory University who studies learning and memory in monkeys. When presented with two images—one novel, the other familiar—primates will fixate longer on the novel one. If the hippocampus is damaged, as it is in Alzheimer’s, however, the subject spends equal time looking at each image.”
You can read the Scientific American article here.
Registration is open for the IOA’s May 5 Sylvan M. Cohen 2015 Annual Retreat: “Aging with Financial Security: Addressing the Challenges of Cognitive Aging and Impairment.” Poster submission is now open as well. Click here to submit your poster information. Deadline for poster submission is April 24.
A study has uncovered what causes people to experience stigmatizing reactions to persons with Alzheimer’s disease dementia.
Researchers –including Rebecca Johnson, M.A. Princeton University Department of Sociology, Jason Karlawish, MD, associate director of the Penn Memory Center, Pamela Sankar, PhD of the Department of Medical Ethics and Health Policy, and Kristin Harkins, research coordinator at the Penn Memory Center — presented these results at the American Public Health Association annual meeting in November 2014.
“This project on Alzheimer’s stigma was sparked by an observation,” says Johnson. “Although researchers, clinicians and the public often talk about how those with Alzheimer’s face stigma, there was a lack of clarity about what features of Alzheimer’s prompt stigmatizing reactions in others.”
The online experiment with 800 adults from the U.S. general population had participants read a story about a patient with symptoms that described mild stage dementia. Participants were randomized to one of nine unique stories that differed in two key features: the disease label (“Alzheimer’s” versus “traumatic brain injury” versus no label), and the prognosis (“symptoms will get better” versus “stay the same” versus “worsen”). Next, the participants answered questions about their attitudes towards the person in the story, such as what emotions they felt and whether they thought the patient’s friends would start to distance themselves from the patient.
All participants read a story about a man with mild stage dementia, but some read that his disabilities were caused by Alzheimer’s while others read that that they were caused by brain injury or they did not have a cause. And the prognosis varied as well. These variations in the label and the prognosis allowed the researchers to test whether the disease label or the prognosis drive stigmatizing reactions.
Learning that the dementia symptoms were caused by Alzheimer’s didn’t prompt more stigmatizing responses than from the other possible causes. In short, the disease label did not influence stigma. Instead, stigmatizing reactions were more likely from people whose story described that the patient’s symptoms would get worse.
The study suggests that one of the best ways to minimize stigmatizing reactions for Alzheimer’s patients is to emphasize the range of clinical outcomes and prognoses people may have. The researchers concluded that it is also important that public messaging around Alzheimer’s should reflect the broad range of levels of the disease rather than just the most severe cases. Most importantly, the results suggest the need to understand the potential for stigma in persons in the “pre-clinical” stage of the disease. This stage — which is still under study and not yet used in clinical practice — describes an asymptomatic person who has Alzheimer’s biomarker pathology. It is a stage defined by prognosis and if this study of stigma is correct, then people with the label may experience stigma.
To listen to a recording of the presentation at the APHA meeting, click here.
In a Wealth Matters column in The New York Times, stories from financial advisers illuminate the challenges for patients and their families. You can read the column here.
On February, 23, 2015, the Penn Memory Center at the Perelman Center for Advanced Medicine will be moving down the hall to the new Penn Neuroscience Center.
Our address remains the same:
Penn Memory Center at the Penn Neuroscience Center
Perelman Center for Advanced Medicine
3400 Civic Center Boulevard, South Pavilion, 2nd Floor
Philadelphia, PA 19104
Join us on May 5, 11:30am – 5:00pm, for the Institute on Aging’s Sylvan M. Cohen 2015 Annual Retreat: “Aging with Financial Security: Addressing the Challenges of Cognitive Aging and Impairment.”
A rapidly aging U.S. population means older adults’ financial well-being and security is becoming an urgent public health concern. The five million people living with Alzheimer’s disease dementia are vulnerable to financial abuse or exploitation, or bad financial decisions. In addition, age-related cognitive changes also put older adults at risk. These problems are especially significant as older adults may have limited time or capacity to recover financial losses. “Aging with Financial Security: Addressing the Challenges of Cognitive Aging and Impairment” will examine the nature and scope of the problem, its challenges, and possible solutions. Experts in adult protective service, academics, advocacy and government will present cutting edge research and innovative solutions to support the financial well-being of older adults.
For more information email Aging@mail.med.upenn.edu or call 215-898-7801.
The deadline to participate in the poster session is April 24, 2015.
Philly Voice recently published a feature about ARTZ Philadelphia’s program to connect dementia patients with art, and its partnership with the Penn Memory Center. Felicia Greenfield, associate director for clinical and research operations at the Penn Memory Center, was interviewed for the article about funding issues in Alzheimer’s research and care.
To read the article, click here.
A New York Times article looks at the debate about whether people who develop dementia can use “voluntarily stopping eating and drinking” (VSED ) or other strategies to end their lives by including such instructions in an advance directive.
Dementia rates and numbers have begun a steep ascent, already afflicting an estimated 30 percent of those older than 85. Baby boomers are receiving a firsthand view of the disease’s devastation and burdens as they care for aging parents.
To read the article, click here.
Philadelphia Inquirer reporter Stacey Burling interviewed Penn Memory Center research participants and clinicians in her article about the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s (A4) Study, entitled “The risk of knowing: Alzheimer’s research volunteers.“
The A4 Study is a historic clinical trial to see if an experimental drug can protect healthy seniors whose brains harbor silent signs that they’re at risk. Ms. Burling spoke with Myrna Roach and Donald Jackson about why they chose to enroll in the study. She also spoke with Jason Karlawish, MD, associate director of the PMC about his A4 sub study which measures how disclosure of study participants’ amyloid status impacts them.
You can read the article here.
Interested in enrolling in the A4 study? Click here for more information.
The Penn Memory Center has launched a new Brain Health Research Registry. By enrolling in the Penn Memory Center’s Brain Health Research Registry you can play a vital role in research. The Registry serves as the research recruitment resource for investigators at the Penn Memory Center who are studying brain diseases such as Alzheimer’s disease, which affects over 5 million people in the US.
The Penn Memory Center Brain Health Research Registry is a confidential database that is made up of people like you who have volunteered to consider participation in research studies. We will contact you periodically with a list of research studies that you may consider joining. Participation is always optional and all information is kept confidential.
Writer Deborah Fries, a contributor to Penn Memory Center’s InSight newsletter and the makingsenseofalzheimers.org website, is teaching an online class, “Writing the Medical Narrative,” this winter through the Loft Literary Center.
“Medical narratives are often passports to otherness, transporting us deep into the far country of an illness,” Ms. Fries says. “And like all good travel writing, they rely heavily on description to delineate a foreign terrain or to resonate with those who have already traveled there.”
“To understand the otherness of an illness or the unseen microscopic works of the body,” she adds, “writers rely on figurative language. The poetic metaphors, similes, and practical analogies that we make give our writing its tone, its heft—and most of all, its agency to affect the reader.”
To learn more about the class, visit the Loft Literary Center.
Congress has created a formal process to ensure that scientific judgment will guide them in future Alzheimer’s research funding. The Alzheimer’s Accountability Act, which was fully incorporated within the fiscal year 2015 funding bill signed into law by the President on December 17, 2014, ensures that funding levels determined by Congress are based on scientific recommendations of the National Institutes of Health. Funding for Alzheimer’s research was also increased by $25 million through this bill.
For more information, click here.
Please join the university community in commemorating Dr. Martin Luther King Jr.’s legacy on January 15, 2015 at noon in the Arthur H. Rubenstein Auditorium at the Smilow Center for Translational Research. This is the first in a series of talks celebrating the Perelman School of Medicine’s 250th anniversary that will address disparities through dialogue, with the goal of achieving health equity for all in the next 250 years.
“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” -Dr. Martin Luther King, Jr.
For more information, click here.
Jason Karlawish, MD, Associate Director of the Penn Memory Center visited the Rochester, NY studios of Second Opinion for an in-depth discussion about one woman’s experience with her mother’ s decline into Alzheimer’s disease, and the signs that were missed or symptoms that were ignored.
The current standard of care or those with Alzheimer’s disease, Dr. Karlawish says, is “education and counseling of the patient and family; symptomatic treatment of the disease and longitudinal follow-up at least every six months to assess rate of progression.”
Second Opinion airs on public television stations through the country. You can view the episode here.
David Satcher, MD, former director of the CDC and former Surgeon General, writes in The Hill, “Our nation is facing a far more dangerous public health crisis than Ebola, and the response has been altogether inadequate.”
“While Ebola is a potential disaster in the United States we must address decisively, Alzheimer’s disease is already today a deadly disaster for millions of American families that we have largely ignored. It is a threat to both public health and to our economy. That is what should frighten people,” he adds.
To read the full article, please click here.
What happens when you bring two medical ethicists together to discuss what it means to age with quality of life? A fascinating debate ensues. On WHYY FM recently, two medical ethicists discussed and debated what quality of life means as we age. You can listen to Jason Karlawish, MD, Associate Director of the Penn Memory Center, and Zeke Emanuel, chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania, on WHYY”S The Pulse.
The fair, which was a collaborative effort between the Center (PMC) and one of their research participants and Community Advisory Board members, Ms. Elsie Shelton, targeted local seniors to educate them on the importance of blending a healthy diet, physical exercise, and social and mental engagement to maintain both cognitive and heart health. After all, what’s good for your heart is good for your brain.
The day kicked off with words of appreciation from Pastor Thomas of First Corinthian Baptist Church and Dr. Jason Karlawish, Associate Director of the Penn Memory Center. The fair provided a variety of services to the community including:
- free glaucoma screenings from the Scheie Eye Institute
- blood pressure screenings and health education materials from Penn Geriatric’s Nurse Practitioner Johanne Louis
- giveaways and education materials provided by Penn Dental students
- healthy brain aging handouts and research opportunities from Penn Memory Center
- caregiver support resources from Jean Kirkley of Boomer R Heroes
- educational materials about AD and caregiver support from Rev. Barbara Jones of the Delaware Valley Chapter of the Alzheimer’s Association
- information about the Philadelphia Games which is an Olympic style event for people 50 years of age and older distributed by the City’s Parks and Recreation
For more information please contact Tigist Hailu at email@example.com .
In a recent Today Health article, Penn Memory Center’s Jason Karlawish, MD shares his insight on what to do if you notice a loved one “slipping away” this holiday season.
“The classic story I see is when the holidays come and the older adult doesn’t do the things they traditionally have,” says Dr. Karlawish. “For example, dad always did his special pecan pies, and when Thanksgiving comes there are no pies or they are a disaster. For many, those may be the first symptoms that show that a parent can’t do everyday tasks anymore.” You can read the article here.
Saturday, November 8, 2014, was a day to honor Penn Memory Center research participants and their study partners. More than 200 people attended the 8th annual Penn Memory Center Thank You Breakfast at the Inn at Penn.
With the theme of “Without research there can be no progress against Alzheimer’s disease or better understanding of healthy brain aging …and without you, there can be no research,” the annual invitation-only breakfast thanks research participants for their contribution to Penn’s Alzheimer’s disease research.
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; David Wolk, MD, assistant director of the Penn Memory Center; Felicia Greenfield, LCSW, associate director for clinical and research operations at the Penn Memory Center; Marianne Watson, RN, PMC’s senior research nurse, and Tigist Hailu,PMC’s coordinator for diversity in research, presented the latest results from their research studies as well as updates on Penn Memory Center programs and upcoming research opportunities.
Kathleen Dunn of Wisconsin Public Radio interviewed Jason Karlawish, MD, Associate Director of the Penn Memory Center, to discuss his belief that as we age we desire not simply to pursue life, but happiness, and that medicine is important, but it’s not the only means to this happiness. You can listen to the interview here.
The University of Pennsylvania Institute on Aging (IOA) and Alzheimer’s Disease Core Center (ADCC) will fund up to six (6) one-year multidisciplinary pilot grants in the 2015-2016 academic year to support biomedical, epidemiological, behavioral or health services research, as well as basic science, clinical or psychosocial research. Two of the pilots, funded by Penn’s ADCC, will focus on Alzheimer’s disease (AD) and related neurodegenerative disorders as well as healthy brain aging. The remaining pilots, supported by funding from the Perelman School of Medicine at Penn (PSOM) to the IOA, will focus on aging and aging-related diseases as well as healthy aging.
Applicants may consider using data from the National Alzheimer’s Coordinating Center. More information can be found at their website: https://www.alz.washington.edu/.
The Principal Investigator (PI) for each of these pilots must be a member of the University of Pennsylvania fulltime faculty from any of its 12 schools. Collaboration with other departments or schools is strongly encouraged. In addition, applicants who want to be considered for the Penn ADCC pilots must ensure that the PI for the pilot commits some effort to the project.
Each pilot will be funded at a level of up to $50,000/year for personnel and supply costs, but not tuition costs, student dissertation research, equipment or instruments. The purpose of these one-year, non-renewable grants is to assist faculty in obtaining preliminary data to serve as the basis of a grant application to the NIH or other public or private agencies concerned with aging and aging related neurodegenerative disorders.
A committee of IOA and ADCC members will review all proposals. Funding depends on scientific merit, and the likelihood that the pilots will lead to independent funding to continue the research beyond the pilot studies. Priority will be given to:
• Faculty in the early stages of their career who seek to enter research fields on aging or AD and related neurodegenerative disorders
• Senior faculty who intend to shift their research emphasis towards aging or AD and related disorders
Applications will be considered for all pilot grant award programs, for which they are eligible, as described in this announcement, and they should be formatted in the style of a NIH PHS 398 application. However, a title page should be substituted for the NIH face page. Application items #5 and #6 below should be limited to 2 pages (exclusive of title page with abstract, budget, biosketches, other support, letters of collaboration, literature cited, etc. as in PHS 398). Animal and/or IRB protocols may be pending.
Organization of the application:
1) Title Page with Abstract (one page; not the NIH face page) showing the title of grant, name of PI, affiliation, address, telephone numbers and email address, as well as an abstract of the proposed project using language that an educated lay audience can understand
2) Budget (costs for personnel and supplies, but no tuition costs, equipment or instruments)
4) Other Support
5) Specific Aims
6) Research Strategy (Significance, Innovation, Approach)
7) Human Subjects (if applicable and protocol may be pending)
8) Vertebrate Animals Sections (if applicable and protocol may be pending)
9) Consultants (if applicable)
10) Consortium Contractual Arrangements (if applicable)
11) Literature Cited
12) Certification of Patient Oriented Research (if applicable)
It is obligatory that Pilot Awardees provide a final report at the end of the pilot year. Financial reports will also be required and Awardees must be responsive to subsequent requests for updates on publications and subsequent grants stemming from their Pilot as this information helps ensure the continuation of this program. In addition, IOA Pilot Awardees must present their pilot data at an IOA Retreat.
For more information, contact Kathryn Jedrziewski, IOA Deputy Director, at (215) 898-2445 or e-mail: firstname.lastname@example.org.
Applications Due: February 6, 2015; anticipated date of award: July 1, 2015.
Submit one hardcopy original and an electronic PDF file (via email) to: Kathryn Jedrziewski, Institute on Aging, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, PA 19104, email@example.com.
Note: If anyone encounters difficulties with the email submission, please contact Kathryn Jedrziewski at the number listed above prior to the due date.
Are you one of the 15.5 million caregivers in the U.S.? This month we thank you as part of #NationalFamilyCaregiversMonth. The Pennsylvania Dept. of Aging also recognizes your commitment to helping others. Take a look at the video they produced featuring caregivers from the #PennMemoryCenter community.
In the October 2014 issue of Medical Ethics Advisor, Jason Karlawish, MD, associate director of the Penn Memory Center, discusses the ethical concerns of preclinical detection of Alzheimer’s disease. “We operationalize our ethic of autonomy through our brain,” Dr. Karlawish says in the article.“So as we talk about labeling people’s brain at risk of decline before they are ill, we are playing with very hot ethical and social issues.”
You can read the article here.
The University of Wisconsin-Milwaukee is leading a study on the impact of the Music and Memory Program, a music program aimed at helping dementia patients. Researchers are studying 1,500 Alzheimer’s and dementia patients who were given iPods at Wisconsin nursing homes through the program. They hope to determine whether music improves mood and behavior, which residents might benefit and then tailor activities accordingly. You can read more here.
The University of Pennsylvania’s Prevention Research Center has been awarded two grants from the Centers for Disease Control (CDC) to advance the CDC’s Healthy Brain Initiative. Penn’s Prevention Research Center, directed by Karen Glanz, PhD, MPH, and Kevin Volpp, MD PhD, conducts innovative public health and disease research aimed at preventing chronic disease and reducing health disparities in Southeastern Pennsylvania. It is one of 26 CDC-supported Prevention Research Centers in the nation.
The “Healthy Brain Initiative Network Collaborating Center” will be led by Jason Karlawish, MD, associate director of the Penn Memory Center and director of the Alzheimer’s Disease Center’s Outreach, Recruitment and Education Core; and Amy Jordan, PhD, co-director of Penn PRC’s Communications and Dissemination Core. “Public Health Communications: Culturally Relevant Messages and Strategies to Promote Awareness about Dementia, including Alzheimer’s Disease” is a collaboration between Drs. Karlawish and Jordan to develop messages and a communication strategy to promote brain health and awareness about Alzheimer’s disease.
“We are thrilled that the CDC selected our proposals for funding,” said Dr. Karlawish. “The Healthy Brain Initiative is an important national effort to promote brain health for older Americans. These awards are a great opportunity for the Philadelphia region and Pennsylvania. They will connect the many smart, talented and motivated leaders in Philadelphia and Pennsylvania with a national effort to promote brain health.”
The goals of the Healthy Brain Initiative Network Collaborating Center are to participate in the Network’s efforts to establish and advance a research and service agenda in cognitive health and healthy brain aging, and support doctoral and postdoctoral education and training in cognitive health and healthy aging. The Center will develop a course “The public health implications of cognitive aging” for the masters in public health program, a certificate program in the Masters in Public Health program, and the “Healthy Brain Initiative Scholars,” for doctoral and post-doctoral students whose research focuses on cognitive health, cognitive impairment, Alzheimer’s disease or dementia.
The Center’s Advisory Board includes leaders in Alzheimer’s disease, aging, and research and health care services for older adults. The members include Brian Duke, Pennsylvania’s Secretary of Aging; Wendy Campbell, President and CEO of the Alzheimer’s Association’s Delaware Valley Chapter; Holly Lange, President and CEO of the Philadelphia Corporation for Aging; and Tinesha Banks, Deputy Executive Director of the Health Promotion Council.
“Public Health Communications: Culturally Relevant Messages and Strategies to Promote Awareness about Dementia, including Alzheimer’s Disease” is a collaboration between Dr. Karlawish and Dr. Jordan that will identify key issues related to communicating about cognitive health and Alzheimer’s disease. As part of this project, the investigators will design and develop public health messages focused on promoting cognitively healthy behaviors. Messages will be relevant for the two most common ethnic groups in the Philadelphia area, African Americans and non-Latino Whites.
Dr. Jordan, Associate Director of Policy Implementation for the Annenberg Public Policy Center at the University of Pennsylvania, has a wealth of experience developing and disseminating public health messages. She explains that “effective messaging to promote healthy behaviors must be done with a solid framework of evidence that supports the targeted behavior and the messages people see. With the support of the CDC, we will be part of a national effort to begin this for brain health. This is a great opportunity to have a national impact.”
These grants are part of the CDC’s Healthy Brain Initiative, inaugurated in 2005, that addresses the public health challenges of cognitive aging and Alzheimer’s disease. The goals of the Initiative’s Road Map for State and National Partnerships, 2013-2018 include developing and disseminating culturally relevant public health messaging about brain health and Alzheimer’s disease.
A total of $12.3 million was awarded to 21 Prevention Research Centers for 56 Special Interest Projects to design, test, and disseminate effective applied public health prevention research strategies. The UPenn Prevention Research Center received 4 awards. To view a complete list of the 2014 awards, click here.
Darina Petrovsky, a predoctoral student at the University of Pennsylvania School of Nursing, and the leader of the Penn Memory Center Choral Group, spoke to WRTI Radio (90.1 FM) about the benefits of singing as a group, including developing new friendships and reducing stress.
You can listen to her interview here, and also hear clips from the group’s performance in May at the Watermark at Logan Square.
Do you know someone who is interested in joining the group? Our fall session is just beginning. Please contact firstname.lastname@example.org for more information.
Two years ago, at a conference in Miami on Alzheimer’s disease, after a session about risk factors and biomarker prediction models, a colleague remarked to Jason Karlawish, M.D., how the singer Leonard Cohen has been saying onstage that when he turns 80, he will resume smoking. As he pondered that comment, Alzheimer’s biomarkers and our zeal to foresee our future, Dr. Karlawish began to think of an essay to take on the question, “When should we set aside a life lived for the future and, instead, embrace the pleasures of the present?”
The essay was published last week in the New York Times, and you can read it here.
In the current issue of The Pennsylvania Gazette you’ll find Penn Memory Center‘s Dr. Jason Karlawish’s review of Nobel Prize winning researcher Stanley Prusiner’s memoir, “Madness and Memory: The Discovery of Prions—A New Biological Principle of Disease.” The memior traces Prusiner’s journey from his Midwestern boyhood to his 1997 Nobel Prize in Physiology/Medicine for his work determining prions as among the causes of neurological diseases.. Prusiner is now director of the Institute for Neurodegenerative Diseases and professor of neurology at the University of California, San Francisco.
In the review, Dr. Karlawish asks, “In the life of the scientist, is there life outside of science?”
You can read the review here.
Starting in 2015, Medicare will pay monthly fees to doctors who manage care for patients with two or more chronic conditions. This is a policy change initiated by the Obama administration.
In an interview in the New York Times, Marilyn B. Tavenner, the administrator of the Centers for Medicare and Medicaid Services said, “Paying separately for chronic care management services is a significant policy change.” The article noted that care coordination could pay for itself by keeping patients healthier and out of hospitals.
“This is great news for our patients at the Penn Memory Center,” says Jason Karlawish, MD, Associate Director of the Penn Memory Center.
“Persons with Alzheimer’s disease and other cognitive disorders typically have other common medical illnesses as well. Taking care of them requires organizing and coordinating information, and communication among disciplines and the patient’s family. It’s a rewarding part of practicing medicine but it’s time intensive.”
You can read the New York Times article here.
A study published in JAMA Neurology on August 11, 2014, suggests that minimizing apoE gene levels in the brain may be an approach to developing a treatment for Alzheimer’s disease. In the study, researchers found that a man with no apolipoprotein E, or apoE, in his body was cognitively normal and showed no neurological signs of Alzheimer’s. Those with a mutation of the gene called apoE4 have a higher risk of developing Alzheimer’s. You can read the study here.
The Philadelphia Inquirer reported on ARTZ Philadelphia’s programming for people with dementia, and the organization’s relationship with the Penn Memory Center. The organization’s goal is to serve, through arts and culture, people with Alzheimer’s and other forms of dementia. The Penn Memory Center is working closely with the organization to spread the word about its museum tours and arts activities. You can read the Philadelphia Inquirer article here.
Alzheimer’s disease experts are testing an unusual approach to the disease: giving the brain what may be a more efficient source of energy. In people with Alzheimer’s and other dementias, the brain loses its ability to properly metabolize glucose early in the course of disease. Several sites are now testing AC-1204, a vanilla-flavored white powder that supplies a type of triglycerides. Steven Arnold, MD, director of the Penn Memory Center, said he was skeptical of the “alternative energy” argument. “Why dying cells can use this energy source better than glucose has never been clear to me,” he told the Philadelphia Inquirer.
You can read the Philadelphia Inquirer article here.
USA Today, citing a Finnish study presented on Sunday, July 13, 2014 at the Alzheimer’s Association International Conference in Denmark, says that everyday health activities can reduce someone’s risk of memory decline. The study is the first to examine the impact of the combination of eating well, exercising, keeping mentally and socially engaged, and managing obesity, high blood pressure and diabetes; other studies have looked at pieces of healthy lifestyles, but not the combination.
You can read the USA Today article here.
An article in the June 2014 issue of Managed Care examines the U.S. Preventive Services Task Force’s recent recommendation declaring that there is currently insufficient evidence to recommend early cognitive screening.
Author Susan Worley interviewed a number of experts in the field of Alzheimer’s disease treatment and research including Jason Karlawish, MD, professor of medicine, medical ethics, and health policy at the University of Pennsylvania, and Associate Director of the Penn Memory Center.
“Cognitive screening in a general population is obviously wrong,” says Dr. Karlawish. “Screening really must be focused on an older population. The lower we set the age, the more we increase the chance of false positive detection. I’m in favor of screening when the probability that you are going to pick up cognitive impairment is reasonably high, and that is in the setting of practices that care for older adults. Among geriatricians, I would say, it is a fairly standard practice to assess your patients’ cognition.”
You can read the article here.
American seniors have lost an estimated $2.9 billion in financial scams in the last decade, and financial institutions need to do more to protect them, experts suggested at a meeting on Monday. June 16.
Jason Karlawish, MD, professor of Medicine and Medical Ethics and Health Policy, told the Philadelphia Inquirer that this is a public health problem and called for a “reboot” of the financial services industry.
“Who are these people selling stuff to seniors as their job?” he asked at a panel on financial abuse of the elderly, sponsored by the United Way in Center City. Though he hates the terms, he said, such people should become “senior certified” or “senior friendly.”
You can read the Philadelphia Inquirer article here.
Myrna Roach and Donald Jackson are the Penn Memory Center’s first two participants in the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study (the “A4 study”), a historic prevention trial which is testing whether a new investigational treatment, called an amyloid antibody, can slow memory loss caused by Alzheimer’s disease.
“There’s a family history of Alzheimer’s disease,” says Ms. Roach, “so I’m interested in helping to find a cure for it, maybe in my lifetime.”
For more information about the A4 trial, click here.
The A4 study is underway to see if an experimental drug can protect healthy seniors whose brains harbor silent signs that they’re at risk. On June 9, a Rhode Island man was hooked up for an IV infusion at Butler Hospital in Providence, the first treated. The $140 million study, funded by the National Institutes of Health, Eli Lilly & Co., and others, will track if participants’ memory and amyloid levels change over three years. The study is enrolling participants at more than 60 sites, including the Penn Memory Center. In an AP article published in June, Dr. Jason Karlawish, Associate Director of the Penn Memory Center, and a designer of the study’s psychological precautions, calls the research “an opportunity to study the future of the way we’re going to think about, talk about and live with the risks of Alzheimer’s disease.” You can read the AP article here.
In a Portland Tribune (Ore.) article about predictive tests for neurodegenerative diseases, Jason Karlawish, MD, professor of Geriatrics and Medical Ethics and Health Policy, says most physicians don’t want to be bothered with predictive tests. Karlawish directs the Neurodegenerative Disease Ethics and Policy Program at the Penn Memory Center. Karlawish says even the most predictive tests such as a genetic test for Huntington’s are inexact. They don’t tell those who test positive when they will get the disease. One study of people learning they tested positive for a gene associated with Alzheimer’s, according to Karlawish, did not show significant numbers of them lapsing into long-term depression or becoming markedly anxious.
You can read the article here.
The University of Pennsylvania Institute on Aging (IOA) and Alzheimer’s Disease Core Center (ADCC) awarded two one-year pilot grants focusing on Alzheimer’s disease (AD) and related neurodegenerative disorders.
“Does Chronic Insomnia Lead to Accumulation of Beta Amyloid?” Philip Gehrman, PhD’s pilot study, will measure beta amyloid and other metabolites in five individuals with chronic insomnia and compare them to five good sleepers. Dr. Gehrman, Assistant Professor in the Department of Psychiatry at the Perelman School of Medicine, University of Pennsylvania, says that the results of the study may help investigators understand how chronic poor sleep may increase the risk for dementia, and inform the development of interventions designed to reduce the likelihood of dementia.
David R. Roalf, PhD, a Research Associate at the the University of Pennsylvania Perelman School of Medicine, Department of Psychiatry, will be focusing on early indicators and detection of cognitive impairments. His pilot study, “Within-individual Variability as a Biomarker of Incipient Dementia in Mild Cognitive Impairment,” will measure neurocognitive variability in individuals with Alzheimer’s disease, Mild Cognitive Impairment and healthy aging to better understand the utility of the fluctuations in neurocognitive ability as an indicator of neurological integrity and its viability as an early indicator of cognitive impairment in MCI.
An Associated Press – NORC Center for Public Affairs Research poll of Americans shows becoming a caregiver to a frail spouse causes more stress than having to care for a parent or an in-law.
While 8 in 10 people who’ve been caregivers called it a positive experience, it’s also incredibly difficult. And while 7 in 10 who cared for a spouse said their relationship grew stronger as a result, nearly two-thirds said it caused stress in their family compared with about half among those who cared for a parent.
You can read more about the poll here.
The Penn Memory Center Choral Group, led by Darina Petrovsky, a Penn Nursing Science PhD student, gave a fantastic performance at The Watermark at Logan Square. Over the course of 4 months, the group rehearsed a selection of Eastern Orthodox Easter music, Russian folk songs and American favorites. The performance closed with a rousing sing-along of America the Beautiful. Click here to see photos.
Caring for a person with Alzheimer’s disease, and keeping them safe, can be challenging. The National Institutes of Health (NIH)‘s ADEAR center offers a booklet for caregivers with suggestions for creating a safer space for people with Alzheimer’s disease.
Step 1? Think prevention.
You can download the booklet here.
The AARP Bulletin reports on reaction to a potential blood test for Alzheimer’s disease. While some experts heralded the news, others worried that, until effective treatments are available, learning that you’re likely to develop Alzheimer’s could cause more harm than good. There’s already good evidence that simple lifestyle changes can help slow the likelihood of developing dementia, says Jason Karlawish, MD, professor of Medicine and Medical Ethics and Health Policy, and Associate Director of the Penn Memory Center, who was not involved in developing the test. “A heart-healthy diet, physical activity, and social and cognitive stimulation can help preserve cognitive function,” he says. People who learn that they are at high risk of developing Alzheimer’s may be more motivated to make healthy changes.
Click here to read more.
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.