By Sally Sapega

Editor’s Note: This article was originally published on Penn Medicine News.

Please join the Penn Memory Center for a series of free events featuring one of the most renowned and influential scholars and writers on psychiatry, anthropology, global health, and cultural issues in medicine. Dr. Arthur Kleinman is the author of The Soul of Care: The Moral Education of a Husband and a Doctor, available for pre-order through Penguin Random House.

By Danny Yarnall 

Jessica Nuñez first walked into the Memory Disorders Clinic on July 10, 1995, having recently finished her sophomore year at Thomas Alva Edison High School. She admittedly didn’t know what to expect from her new summer job. 

“I did not know anything about the memory center. I did not know anything about Alzheimer’s disease. I just needed a part-time job in the summertime,” said Jessica, now in her 25th — and final — year at what has become the Penn Memory Center. A research coordinator since 2003, Jessica will be leaving PMC in August to pursue new career opportunities.

By Sharnita Midgett

Carolyn L. Whitaker walks into the Perelman Center for Advanced Medicine for her visit. As a returning participant of the Aging Brain Cohort Study (ABC), she follows the now-familiar routine: 

Melissa Kelley

1. check in with the research coordinator
2. review medical history
3. remove all metal 

She prepares to spend the next few hours in or preparing to go in two MRI scanners, the 3 Tesla (3T) and the 7 Tesla (7T). During the scan, she waits to hear the voice of her coordinator, Melissa Kelley, letting her know how much time she has left in the scanner. For her, this has become her favorite part of the study.

“It allows me to just lay down somewhere from 45 minutes to an hour and just be quiet. It’s like a gift,” she said.

Penn Memory Center co-director Jason Karlawish, MD, was a guest on the latest episode of the Dementia Matters podcast, hosted by Dr. Nathaniel Chin of the University of Wisconsin. The episode was a one-on-one conversation about the changing definition of Alzheimer’s disease.

Chin and Karlawish aimed to demystify some of the surrounding confusion around Alzheimer’s stemming from stigma, explain the interchangeable use of the disease with the broader “dementia,” and discuss the emerging research in biomarker screenings to disclose Alzheimer’s risk in individuals.

“The ‘brand’ of Alzheimer’s has been stretched to its limits,” Karlawish said. “We’ll use ‘Alzheimer’s’ to denote a specific disease, but also it’ll be the overarching term that captures the general problem.”

You can listen to the full episode here or subscribe to the Dementia Matters podcast on iTunes, Spotify, Podbean, Stitcher, or Google Play Music.

By Sharnita Midgett

Driver A is a Penn Memory Center patient who is referred to the Bryn Mawr Driver Rehab Program and fails the driver evaluation. He had an inkling that it was time to stop driving, and after listening to the concerns of family members, Driver A takes the keys out of his pocket and gives them to his family. “You’re right,” he says. “I’m going to stop driving now.” The family comes to a resolution on next steps.

Driver B is also referred to the Bryn Mawr Driver Rehab Program. She fails the test but does not want to stop driving. She is convinced her driving is fine, even after running several red lights, and argues with her family about needing to give up her keys. “I need to drive to take care of my family,” she says. “I don’t want to depend on other people.”

Tom Kalina, MS/OTR, CDRS, certified driving rehabilitation specialist for the Bryn Mawr Driver Rehab Program, sees each of these scenarios frequently when working with driving and dementia.

Kalina has seen cases where people were referred to the program because they were significantly lost by several states away. Sometimes it can take a couple days to find a person who has become lost. 

“These same people might come in for the evaluation and drive fairly well,” he said. 

Dr. Lauren McCollum (center) is a Cognitive and Behavioral Neurology Clinical Fellow in the Penn Memory Center.

By Leah Fein

Penn Memory Center (PMC) researchers found tau, a protein in the brain, may help distinguish Alzheimer’s disease from other forms of cognitive impairment.

Lauren McCollum, cognitive and behavioral neurology clinical fellow; Laura Wisse, PMC Scholar; and David Wolk, PMC co-director presented their poster titled “Cognitive Profiles in Amyloid-Positive MCI & Alzheimer’s Disease with and without Tau” at the American Academy for Neurology Annual Meeting.

By Danny Yarnall

The My Alzheimer’s Story Project, a seven-city tour gathering interviews with everyday Americans dealing with and researching Alzheimer’s, completed filming in Philadelphia this summer.

Documentary filmmakers Zach Jordan, Peter Schankowitz, and their crew partnered with Penn Memory Center and AARP, and traveled around the country conducting more than 80 interviews for the film. These interviews will also be used by University of Pennsylvania researchers to gain insight into patients and direct individual care.

Jordan’s previous film, Carpe Kilamanjaro (2016) documented his father’s and his own journey as his father battled with Alzheimer’s and served as inspiration for the MyAlzheimer’s Project.

Jordan, 42, sat down with AARP to discuss the takeaways and what he learned meeting with a diverse group of Alzheimer’s patients and their caregivers from Los Angeles to Philadelphia.

“Nobody has ever done anything like this before, so it’ll be very interesting to see how it pans out,” he told AARP.

By Danny Yarnall

PMC scholar Emily Largent, PhD, JD, RN, was a featured guest on the Good Law/Bad Law legal podcast hosted by University of Pennsylvania law school alumnus Aaron Freiwald. The episode’s topic was “aid in dying” — a set of laws that allow terminally-ill patients who meet specific requirements to take medication to end their own life. 

The issue has been thrust into the national spotlight as Maine and New Jersey are set to become the eighth and ninth states to allow aid in dying in the U.S., joining Oregon, Washington, Vermont, Montana, California, Colorado, and Hawaii, as well as the District of Columbia. Largent broke down the ethical and legal debates behind the issue as well as adding her own experience as a nurse and bioethicist in the discussion.

“On one hand, we think the clinicians should really set out the range of options for patients when they’re making decisions about a course of treatment,” Dr. Largent said on the podcast. “…At the same time, I think suggesting hastening death brings it back to being incompatible to the role of traditional medical ethics.”

You can listen to the full episode here.

Dr. Largent was also interviewed in a recent New York Times story on the subject. 

By Leah Fein and Danny Yarnall 

A recent study conducted by Penn Program on Precision Medicine for the Brain (P3MB) researcher Emily Largent, PhD, JD, RN, reveals new information on a hot-button debate in medical ethics.

The study, published in JAMA Neurology, looked at personal perceptions of access to aid-in-dying for Alzheimer’s disease and dementia patients. With new legislation in New Jersey and Maine, by October 2019 roughly 1 in 5 Americans will live in states where doctors can prescribe lethal medication to patients with capacity who have six months or less to live. 

P3MB researchers interviewed 50 older adults, most with family histories of Alzheimer’s and all with elevated levels of the Alzheimer’s disease biomarker amyloid. Amyloid confers “an increased but uncertain risk of developing Alzheimer’s disease,” Dr. Largent told The New York Times. The P3MB researchers found that about 1 in 5 of the individuals expressed interest in aid-in-dying if they became cognitively impaired or were a burden to their families, while another 15 percent described themselves as ambivalent. Two-thirds of the group would not choose aid-in-dying for themselves.  

By Leah Fein

One in 10, or about 5.8 million, Americans are living with Alzheimer’s disease. This number is predicted to rise to about 14 million by 2050. In Pennsylvania alone, the percentage of people living with Alzheimer’s is expected to increase by 14.3 percent in the next five years, according to the 2019 Alzheimer’s Association Facts and Figures.

By Danny Yarnall

The very definition of health is up for debate.

PMC scholar Cara Kiernan Fallon and PMC Co-Director Jason Karlawish recently authored editorials for for the American Public Health Journal  and STAT that support an update to the definition of human health made seven decades ago at the World Health Organization’s (WHO) inception. 

“We thought about the ways current public health initiatives for ‘healthy aging’ reflect a contradiction in terms, and then we turned to the definition of health,” said Fallon, who is also a Bioethics Fellow at UPenn.

The WHO currently describes health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” The pair argues as medical science prolongs lifespan and improves quality of life while living with the disease, “healthy” has taken on a new meaning. They recommend the definition be expanded to include noncommunicable disease and special considerations for the elderly, as more than two-thirds of adults 65 or older live with more than two diseases. 

Credit: Penn Medicine News

By Leah Fein

The music we listen to early in life remains engrained in our brain and can even be recognized throughout the course of Alzheimer’s disease. Memory in Motion aimed to use this power of music to get people living with cognitive deficits and their caregivers up, moving, and having fun. Colby Damon, a former professional dancer with BalletX, led the group.

“Dance gets the heart rate up and the circulation flowing, but the only side effect is having fun,” Damon told Penn Medicine News. “It breaks the isolation, connecting them with music and thereby emotional associations they know and love.”

Jack Witzman (left) was always by his wife Jackie’s side as she participated in a clinical trial at the Penn Memory Center. Jackie has Alzheimer’s disease. (Photo by Terrence Casey)

By Sharnita Midgett

Jack Witzman remembers the first time his wife, Jackie, met the new executive director of Easterseals last summer while he toured the adult daycare. 

Upon meeting him, Jackie got up and started to dance. She was trying to teach him line dancing, and Jack knew that his wife enjoyed the atmosphere. A year later, Jackie became a 2019 Ambassador for Easterseals.  

By Sharnita Midgett

Despite its central role in defining the experiences of those diagnosed with Alzheimer’s disease, stigma in dementia has been understudied.

In a paper published in Current Psychiatry titled Stigma in Dementia: It’s Time to Talk about It co-authored by Penn Memory Center Scholar, Shana Stites, PsyD, MA, MS, the authors highlight the impact of stigma on those with dementia, how it has been studied and addressed in the past, and steps to mitigate stigma in the future. The paper follows a collaboration of the authors for a symposium on stigma that they presented at the 2018 Gerontological Society of America (GSA) Annual Scientific Meeting in Boston.

By Leah Fein

Although voting is a fundamental right in the United States, people with serious mental illnesses (SMIs) often encounter barriers when voting. To better understand these barriers, researchers at Wesleyan University and Yale University conducted a review of current psychological and legal literature.

There are various federal laws that protect voting rights for persons with disabilities, such as the Americans with Disabilities Act and the Help America Vote Act. However, the researchers found that certain state laws regarding voter competence, photo IDs, voter challenges and incarceration practices can unequally effect persons with SMIs. 

More specifically, only 10 states do not have any legal restrictions on voting for people with disabilities based on competence. All other states have a system in place to restrict voting rights of people with disabilities who are determined incapacitated. 

Illustration of amyloid plaques on a nerve cell

By Christine Willinger

Over the past 25 years, biomedical research has revolutionized the diagnosis of Alzheimer’s disease (AD). Once based solely on clinical signs and symptoms, today’s diagnosis involves advanced methods that can detect neurodegeneration far earlier than before, including imaging and biological fluids. 

By Leah Fein and Christine Willinger

Researchers at the Penn Memory Center and their collaborators will present their work at the Alzheimer’s Association International Conference (AAIC), held in Los Angeles from July 14-18.

AAIC is the world’s leading forum for the advancement of dementia science, and the PMC team will share a wide range of research. 

By Cynthia Clyburn

A recent report published by the Economist Intelligence Unit (EIU) and funded by Novartis evaluated the effects of three neurological conditions — migraine, multiple sclerosis, and Alzheimer’s disease (AD) — on people in the workplace.

With increased life expectancy and extended retirement ages, more older adults are part of the workforce. As a result, a growing number of employees are either living with AD or caring for someone with AD.

“Previously, by the time we saw these patients, they would be quite disabled and their history would include how they stopped work,” Penn Memory Center Co-Director Jason Karlawish wrote. “More often than not, now they have milder symptoms [of AD] and people are still at work [as they were diagnosed earlier].”

The Philadelphia Financial Exploitation Prevention Task Force

By Christine Willinger

A 77-year-old widow requests a withdrawal of $20,000 from her bank account. She just purchased a second home and needs the funds for home improvement, she says, and an account manager approves the request. 

One week later, she withdraws $30,000 for the same reason. The request goes through easily. 

Another week goes by; now she requests $100,000 for an “investment.” Concerned, the account manager offers to vet this investment opportunity, but she declines. The request goes through. 

The withdrawals were for neither home improvements nor investment opportunities; she was making payments to a “friend,” made on an online dating site, who claimed to need financial support to visit her in the U.S. 

This is a real case described by Nancy Heffner, CRCP, Director of Compliance at Lincoln Investment Planning and panelist at this year’s World Elder Abuse Awareness Day event, held by the Philadelphia Financial Exploitation Prevention Task Force.

01 Siemens MAGNETOM Trio by Image Editor. CC-BY-2.0 via Flickr.

By Christine Willinger

Measuring blood flow in the brain with MRI may help predict decreases in brain volume due to Alzheimer’s disease (AD), according to a recent study published by Penn Memory Center researchers in the journal Hippocampus. 

By Janissa Delzo

David Dyke has a hard time remembering details and dates.

“But he knows when this is,” Sue Dyke says of her husband, a patient at the Penn Memory Center. “It’s written down in his calendar, he knows it’s time to come to the Memory Café.”

By Leah Fein

Music is a shared language, the sounds often allowing for complex sharing of emotions and experiences.

The piece begins with sounds of anticipation, moves to excitement and stress, and ends in feelings of relief. With the help of musicians from the Curtis Institute of Music, Penn Memory Center (PMC) community members translated their emotions of moving into music.

By Linnea Langkammer

Faster cognitive decline in individuals with Parkinson’s disease (PD) is associated with a gene once thought to only be connected to frontotemporal dementia (FTD), new research from the University of Pennsylvania finds.

Versions of the gene, TMEM106B, have long been associated with a higher risk and disease severity in a subtype of FTD called FTLD-TDP. But emerging evidence demonstrates TMEM106B may play a role in other neurodegenerative diseases, like PD and Alzheimer’s disease (AD).

By Leah Fein

The use of dietary supplements will not improve brain health or prevent cognitive decline, dementia or Alzheimer’s disease, according to a new report from the Global Council on Brain Health (GCBH).

Dietary supplements are products that contain a “dietary ingredient,” like vitamins and minerals. Supplements can come in many forms too, such as pills, powders, liquids, and food bars.

“It’s tempting to think you can pop a pill and prevent dementia—but the science says that doesn’t work,” said Sarah Lenz Lock, AARP senior vice president for policy and GCBH executive director. “The good news is, we know what will help to keep your brain healthy: exercise, a healthy diet, plenty of sleep, challenging your thinking skills, and connecting with others.

“Rather than buying a dietary supplement, spend your money on new walking shoes or a salmon dinner.”

The Penn Memory Center continued its new Empowering Caregivers speaker series this year with Jerry Rothkoff, Esq., who presented “Elder Care Issues and the Law.”

Empowering Caregivers gives caregivers access to area experts who present on a variety of intensive topics, from in-home activities to end-of-life care.

All sessions are full. We appreciate your enthusiasm

Penn Memory Center Co-Director Jason Karlawish, MD, recently lead a discussion about ways to keep an aging brain healthy at a packed house at the Ralston Wellness Center.  

From debunking the Alzheimer’s-preventing ability of Sodoku and cognitive supplements to recommending a heart-healthy, Mediterranean diet, Dr. Karlawish spent the majority of the hour answering questions from the crowd.

As a foundation to the discussion, Dr. Karlawish explained commonly-heard terms, such as mild cognitive impairment and “memory center,” and clarified the distinction between dementia and Alzheimer’s disease.

Healthy aging requires adults to challenge your brain and stay both physically active and socially engaged, according to the Global Council on Brain Health, of which Dr. Karlawish is a member.

On May 7, the National Alzheimer’s and Dementia Resource Center hosted the webinar titled “The messages We Send: Stigma Toward Persons Living with Dementia and How to End It.” 

Rev. Cynthia Huling-Hummel, D. Min., and Penn Memory Center Scholar Shana Stites, PsyD, MA, MS, led the seminar about the types of stigma that can affect persons with dementia.

During the seminar, Dr. Stites describes the powerful role of language in creating stigma of dementia and how people can counteract this stigma through use of strengths-based and person-centered language when talking with and about persons with dementia. Dr. Huling-Hummel, who was diagnosed with Alzheimer’s disease in 2011, shares her own experience related to these issues as well.

From watching this seminar, viewers can expect to acquire person-centered language strategies to help end stigma surrounding dementia.

By Leah Fein

The World Health Organization (WHO) recently released a set of guidelines to reduce the risk of dementia globally, essentially advising to take care of your heart to take care of your brain. 

Dementia is a loss of cognitive functioning — thinking, memory, reasoning, and behavioral abilities — to the extent that it interferes with a person’s daily life and activities. Dementia has many causes and no cure, which is why the WHO emphasized the need for adopting healthy behaviors.

“The scientific evidence gathered for these guidelines confirm what we have suspected for some time, that what is good for our heart, is also good for our brain,” WHO Director-General Tedros Adhanom Ghebreyesus said in a statement.

By Leah Fein

Your spouse can identify serious memory problems more accurately than you can.

That’s the takeaway from the Philadelphia Inquirer’s recent interview with Dawn Mechanic-Hamilton, Penn Memory Center (PMC) Director of Cognitive Fitness Programs and Neuropsychological Services, about her research, which found no relationship between progressive cognitive decline and people’s perceived memory concerns.

However, Dr. Mechanic-Hamilton, along with PMC Co-Director Dr. David Wolk and medical student Leah Zuroff, did find that proxies, like a spouse, were much better at correctly identifying cognitive changes that progressed to mild cognitive impairment or dementia.

By Leah Fein and the Netter Center for Community Partnerships

The founding partners of the intergenerational Dance for Health program were honored last week with the 2019 Provost-Netter Center Faculty-Community Partnership Award. This award recognizes and supports outstanding, sustained, and productive university/community partnerships.

Terri H. Lipman, PhD, CRNP, FAAN, is the Assistant Dean for Community Engagement, the Miriam Stirl Endowed Term Professor of Nutrition, and Professor of Nursing of Children at the School of Nursing, and maintains a clinical practice as a pediatric nurse practitioner in the Division of Diabetes and Endocrinology at the Children’s Hospital of Philadelphia (CHOP).

Dr. Lipman and Inthedance, LLC co-founders David and Serena Williams Early began Dance for Health program in 2012 with a goal of increasing access to physical activity and encouraging balance and body movement through dance. Since its inception, Dance for Health has engaged 700 participants and has demonstrated a positive impact on cardiovascular health, anxiety, memory, and social support.

Monday, May 20th, 2019
Noon to 1 p.m.
Ralston Wellness Center
3615 Chestnut Street, Philadelphia, PA

Join Penn Memory Center Co-Director Jason Karlawish, MD, for a free discussion on how your lifestyle affects your brain as you age. Learn what activities are effective in protecting your brain health and how and when to do them.

Healthy aging requires adults to challenge your brain and stay both physically active and socially engaged, according to the Global Council on Brain Health, of which Dr. Karlawish is a member. Learn more about these strategies at “Healthy Brain Aging.”

The program and lunch are free, though registration is required. Call 215-386-2984 or email contact@ralstoncenter.org to RSVP.

By Janissa Delzo

If you learned you had an increased risk of developing Alzheimer’s disease, would you ever consider physician-assisted death (PAD)?

This is the question asked of participants in a Penn Memory Center study published this week in JAMA Neurology. About 20 percent of individuals who had learned they had elevated beta-amyloid, an Alzheimer’s-linked protein, reported that they would consider PAD “if they became cognitively impaired, were suffering, or were burdening others.”

The team lead by author and PMC scholar Emily Largent first interviewed 50 individuals from the Anti-Amyloid Treatment in Asymptomatic Alzheimer’s study 4 to 12 weeks after they were informed of elevated beta-amyloid in their brain; some had broached the subject of PAD without prompting by researchers. At a 12-month follow-up, 47 participants were asked about PAD.

Under current U.S. laws, persons with dementia are not eligible for PAD. However, in seven states and Washington D.C., those who are competent and terminally ill are eligible.

“There are ongoing ethics and policy debates around whether to extend physician-assisted death to patients with neurodegenerative diseases, including Alzheimer’s,” said Largent. “This was a unique opportunity to gauge interest in PAD in people who recently learned they were at increased risk for dementia.”

One participant called for more research into the topic.

“You should not have to suffer, and if you do not remember anything and you are just a burden, then that is not any kind of life,” the participant told researchers.

Nearly two-thirds of respondents said they would not consider physician-assisted death, citing personal, religious, or philosophical objections.

Largent’s team interviewed 30 individuals who did not have elevated beta-amyloid. When asked to consider a hypothetical situation in which they did, their responses regarding PAD or suicide were similar to those with elevated amyloid.

PMC Co-Director Jason Karlawish, MD, and Research Program Manager Kristin Harkins, MPH, are also co-authors on the paper. To read the full research letter, titled “Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer’s Disease Biomarker,” click here.

By Linnea Langkammer

Researchers have identified and named a distinct brain disorder that mimics some features of Alzheimer’s disease (AD) and may have led to incorrect diagnoses in the past.

The disorder, known as LATE (Limbic-predominant Age-related TDP-43 Encephalopathy), develops when the naturally-occurring protein TDP-43 misfolds, causing AD-like symptoms. Scientists described LATE in a report published on April 30, 2019, in the journal Brain.

The Penn Memory Center continued its new Empowering Caregivers speaker series this year with Future Works Consulting’s Sharon Buckmaster, PhD, who presented “When, Why, and How to Move to a Memory Care Facility.”

Empowering Caregivers gives caregivers access to area experts who present on a variety of intensive topics, from in-home activities to end-of-life care.

All sessions are full. We appreciate your enthusiasm.

By Felicia Greenfield, Executive Director

The Penn Memory Center team says goodbye and good luck to the latest corps of social work students, who have successfully completed their internships.

Sarah Bujno, Nora Garland, Laura Vargas, and Matt Volpe helped develop and maintain psychosocial support programs for patients and caregivers at PMC since the beginning of the academic year. Their last day is May 1, 2019.

The National Alzheimer’s and Dementia Resource Center is hosting a webinar series, sponsored by the Administration for Community Living. A presentation, titled “The Messages We Send: Stigma Toward Persons Living with Dementia and How to End It,” will be led by Penn Memory Center scholar Shana Stites, PsyD, MA, MS and Rev. Cynthia Huling Hummel, D.Min., who is living with early stage dementia.

Webinar participants will be able to:

• Describe and define types of stigma around dementia;
• Describe and give examples of the role of language in stigma around dementia;
• Define what it means to use a strength-based approach with persons who have dementia; and,
• List three examples of person-centered language to counter stigma around dementia.

The presentation is on Tuesday, May 7 at  2 p.m. ET. It’s free and open to the public, but registration is required.

By Janissa Delzo

Penn Memory Center (PMC) Co-Director Jason Karlawish, MD, and PMC Scholar Cara Fallon, PhD, MPH, presented at the 2019 Alzheimer’s Disease-Related Dementias (ADRD) Summit.

The duo gave an 11-minute talk titled, “Stigma: Considerations of Ethics and History.” Karlawish kicked off the conversation by informing the audience of their goal: “to help understand how stigma is embodied in nomenclature.”

He went on to detail that stigma is “both a mark and a process” and has three types: self-stigma (internalized stigma), public stigma (externalized/enacted stigma), and spillover stigma (stigma by association). He also discussed the ethical implications of stigma.

Fallon, a historian, then took the mic and educated the audience about the history of terms used for intellectual and development disabilities in the U.S.

Karlawish and Fallon acknowledge that a change in words alone will not end stigma. Rather, beliefs and attitudes need to change. The language will “both lead and follow,” he said.

To view a video of the first day of the summit, click here. Karlawish and Fallon’s presentation begins at 6:31:37.

The ADRD Summit took place March 14-15, 2019 at the Natcher Auditorium on the National Institutes of Health campus in Bethesda, Maryland and was sponsored by the National Institute of Neurological Disorders and Stroke.

By Sharnita Midgett

A group of young scientists in Minnesota recently welcomed Penn Memory Center Co-Director Jason Karlawish, MD, into their classroom.

High school students in the Shattuck-St. Mary’s School bioscience enrichment program have been reading Karlawish’s 2011 historical novel Open Wound to enrich their study of the digestive system. Program Director Maren LaLiberty, MD, invited Karlawish to Skype in with the classroom before the students finished the book.

“There are certain aspects of anatomy and physiology that can really only be illuminated by stories,” LaLiberty said.