Features on people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight from the
P E N N
M E M O R Y
C E N T E R 2018/2019
Easy as ABC Our largest and longest research study asks quite a bit of its participants. But data collected from those annual visits add up to a better understanding of brain health as we age. | page 12
PENN MEMORY CENTER PERELMAN CENTER FOR ADVANCED MEDICINE
215-662-7810
www.pennmemorycenter.org
Letter from the Editor
On people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight.
Dear Reader,
PUBLISHER Jason Karlawish jason.karlawish@uphs.upenn.edu EDITOR Terrence Casey terrence.casey@uphs.upenn.edu 215-898-9979 CONTRIBUTORS Janissa Delzo Dutch Godshalk Linnea Langkammer Joyce Lee Sharnita Midgett OFFICE 3615 Chestnut Street Philadelphia, PA 19104 www.pennmemorycenter.org www.makingsenseofalzheimers.org Follow us on Facebook https://www.facebook.com/ PennMemoryCenter
l Our staff and programs are dedicated to research in Alzheimer’s disease, age-related cognitive problems, lifelong brain health and improving the well-being of our patients and their families. l Produced by the Penn Memory Center, part of Penn Medicine. We welcome and encourage your questions, comments, suggestions and gifts.
INSIGHT
In the pages that follow, you’ll learn more about our popular Memory Café (now entering its fourth year) and our strong relationship with the Curtis Institute of Music. You’ll receive an update on the copper work of our patient and resident artist, Carl Duzen, who was featured in last year’s InSight. You’ll also learn more about why PMC spent time at the opera. Our cover story (pages 12-17) is our biggest InSight story yet, which is fitting for the oldest and most populated research study taking place here: the ABC Study. “The Study Formerly Known as
l The Penn Memory Center is a National Institute on Agingdesignated Alzheimer’s Disease Center (ADC), the only one in our tri-state region.
PRINTING Fort Nassau Graphics http://fortnassaugraphics.net/
Over the last three years, InSight has grown exponentially, still focusing on cutting-edge research taking place at Penn, but also shining a bright spotlight on everything else that makes the Penn Memory Center unique.
NACC,” as we call it, follows more than 400 participants year after year to track their cognitive health through neuropsychological testing, brain imaging, clinical evaluations, and — new in 2018 — smartphone apps. If you enjoy the stories in this edition of InSight, subscribe to our weekly email newsletter, sent every Sunday morning, at www.pennmemorycenter.org. This email takes a deep dive into not just the projects and research of the Penn Memory Center, but also the latest in Alzheimer’s news and research around the globe. Like most other elements of the center, our editorial projects depend on your philanthropic support. Consider making a donation to support this magazine, our weekly newsletter, and other projects (we hear podcasts are a big thing right now). You can learn more on our giving page: www.pennmemorycenter.org/gifts. PMC is a 501(c)3 non-profit organization and contributions are tax-deductible. Sincerely,
Terrence Casey
In this edition: 3...........................................................Time Out Respite Care Program 4.................................................................Three years of Memory Café 6..................PMC, Opera Philadelphia collaborate on Sky on Swings 8.................................Featured Research at the Penn Memory Center 10......................................................................................Staff Highlights 11........................................................................The New Faces at PMC 12............................................................................The ABC Experience 18.................................................................Art of the Mind on Display 19...........................................Creating music with the Curtis Institute 20................................... Co-Director Dr. Jason Karlawish on bio-age 22..........................................Why I support the Penn Memory Center 23...............................................................Thank you to our supporters 28.............................................................................Caregiver Workshop
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Revived ‘Time Out’ program offers affordable respite care by Linnea Langkammer
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wo Philadelphia universities are partnering to offer affordable, inhome respite care to area families caring for older adults. The Penn Memory Center (PMC) and the Temple University Intergenerational Center jointly revitalized Time Out, a support and mentorship program first launched in 1986. Time Out will facilitate meaningful, inhome engagement through intergenerational companionship by connecting elderly individuals with PMC-trained college students. This engagement could include conversation, reading, or mobility assistance, and may also include meal preparation, laundry, and light grocery shopping. It does not include personal care — such as bathing, dressing, feeding, or toileting — nor administering medications or therapies. While private respite care may cost more than $20 an hour, Time Out care providers will be available for $8.50 an hour and up to 10 hours per week. PMC Executive Director Felicia Greenfield, MSW, LCSW, brings to Time Out a history of training students for care work.
their caregivers. Through Time Out, she will train Philadelphia-area undergraduates for part-time work in respite care.
‘We are thrilled to be part of this solution to an unmet need.’
“We are thrilled to be a part of this solution to an unmet need,” Greenfield said. “Intergenerational programming is a powerful way to bring people together.
“Traditional respite care can be cost-proFelicia Greenfield PMC Executive Director hibitive for many Philadelphians, and we are pleased to deliver highAt PMC, she prepares students in the quality, affordable care to families while University of Pennsylvania’s Master of providing meaningful work and training Social Work program for a career work- to the future generation of geriatric pracing in social services for older adults and titioners.” INSIGHT
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Dr. Patience Lehrman, Intergenerational Center executive director, said the program’s goal hasn’t changed in the last three decades. “By engaging college students and matching them with older adults to provide caring companionship, and meaningful engagement, we seek to mitigate isolation and preserve this vulnerable population’s dignity, independence, and overall quality of life.” The Pew Charitable Trusts recently awarded $225,000 to the partnership in support of the Time Out program. Time Out will begin enrolling families and caregivers in early 2019. Visit us at www.pennmemorycenter.org/timeout for the latest information. 2018 / 2019
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On the menu at Memory Café: coffee, tea, and a cappella by Janissa Delzo
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avid 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.” The Dykes, married 49 years, have attended the Memory Café since its inception in December 2015. David typically pulls away from unfamiliar situations, because he’s hesitant about meeting new people, but “not here,” she says. “Everybody is in the same boat.” We’re sitting at a table on the second floor of Christ Church Neighborhood House in Old City following a lesson from professional dancer and choreographer R. Colby Damon, who tailored his class specifically to the unique challenges of those living with Alzheimer’s disease. He’s one of the many performers who have come to entertain guests at the 90-minute cafés for people with memory problems and their partners/families.
INSIGHT
But performers weren’t always a staple of the monthly gatherings. Over the past three years, the social event has come a long way. It once involved just a few guests sitting around tables, chatting between sips of coffee donated from Gia Pronto Kitchen, a café on the ground floor of the Perelman Center for Advanced Medicine.
“It was very bare bones,” says PMC Associate Director of Social Work Alison Lynn, MSW, LCSW. “It’s evolved now into this thing where we have that time for socialization, then we have a performer, often allowing for a Q+A after the month’s performance.” The list of performers and other guests
Watch as the Philadelphia Zoo brings wildlife to our café. Visit www.pennmemorycenter.org/cafe
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that have come to entertain café-goers is impressive: The Philadelphia Zoo on Wheels brought Bandit the African hedgehog and Cooper the ring-necked dove, among other friendly creatures. Photographer Johanna Austin held a portrait session of caregivers and their loved ones, gifting guests the images. The Mütter Museum presented an exhibit featuring crude medical tools used during the Civil War. “The ones that I love best are the unusual ones,” says Dyke. “There was a group of women from the Main Line who sang Bulgarian folk songs phonetically because nobody spoke Bulgarian. They were just wonderful.” As the entertainment has evolved, so has the crowd. On average, about 20 participants attend each month, but there have been many events where that number was closer to 30. Aside from the entertainment, the best part is the opportunity it gives Sue and David to socialize with people who are
Save The Dates
Cafés are held from 10:30 a.m . to noon one Friday of each month at Christ Church Internation al House, 20 N. American Stre et
Friday, January 4, 2019 Friday, February 1, 2019 Friday, March 29, 2019 Friday, April 12, 2019 For more information and upd ates, visit www.pennmemory center.org/cafe
going through similar situations, she says. Lynn agrees and believes it’s especially rewarding seeing patients engaged in presentations, activities and performances, especially when she knows that their caregivers have a tough time keeping them busy. “It brings relief to both the person suffering from memory loss but also from their caregiver watching them enjoy something and being able to bond over that experience,” Lynn says.
Memory cafés were first created in the Netherlands in 1997 by Dr. Bere Miesen, a Dutch psychiatrist, and introduced to the United States about a decade later. The concept was introduced to PMC by Genevieve Gellert, then a social work intern, and green-lit by Executive Director Felicia Greenfield, MSW, LCSW, in July 2015. “They haven’t really been that prominent or pervasive throughout the country,” Gellert said in 2015. “I thought that we could use one in Philadelphia to increase services for those with dementia.” Although the Memory Café has greatly evolved, Lynn — who was Gellert’s cointern and has been leading the sessions since summer 2016 — is hopeful there will be even more growth in the months and years to come. Specifically, she hopes to increase the number of attendees and continue to engage with the Penn community by bringing in student groups to encourage intergenerational programming.
Terrence Casey / Penn Memory Center Left: Café guests listen as three students from the Curtis Institute of Music perform at an early Memory Café. Top Left: Café guests listen closely as Curtis students perform in late 2018. Above: Cooper the ring-necked dove visited Memory Café in October 2018. INSIGHT
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“I think that it’s a wonderful thing for people to be able to participate in,” says Dyke. “If you were sitting here looking at people, you see how much they enjoy being here.” 2018 / 2019
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Sky on Swings takes an operatic approach to life with Alzheimer’s with Alzheimer’s disease.
by Dutch Godshalk
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here is something deceptive about the set design for Sky on Swings, an original opera that debuted at the Perelman Theater in Philadelphia in September. The stage is barren, not much more than two walls and a floor—everything painted white. Occasionally, there is a table and some chairs, but mostly the set is empty. But this vacant set belies the complexity of Sky on Swings. Around halfway through the production, the stage comes alive with swirling lights, billowing curtains, intersecting shadows—and orchestral music so ornate it’s practically a set piece all its own. From the minds of composer Lembit Beecher, librettist Hannah Moscovitch, and director Joanna Settle, Sky on Swings depicts the fragmented experiences of two modern women living
This premise may sound like a tough watch—one of those stories that is sure to take a piece out of you. And, to an extent, it does do that. But Sky on Swings is the rare Alzheimer’s story that acknowledges the emotional, psychological, and familial challenges of dementia while also insisting that there is life after diagnosis. Full and enriching life. What begins as tragedy slowly develops into something closer to romance. Sky on Swings follows Martha (played by mezzo-soprano Marietta Simpson) and Danny (fellow mezzo Frederica von Stade), two women at different stages of Alzheimer’s who meet in a nursing home. Or, as Danny says in a fit of exasperated rage, where, “I’ll lose my f---ing mind and die.” “I think I’ve used more F-bombs in [Sky on Swings] than I’ve used in the
last 20 years,” said von Stade, a worldrenowned singer and six-time Grammy nominee. She described Danny as a high-powered scientist who “depends on her mind for her life. She’s immediate and aggressive.” Danny is newly diagnosed with Alzheimer’s when the show begins, and she is still very much going through the stages of grief, begrudgingly moving toward acceptance. “What’s happened to her is not more brutal by any means,” said von Stade, “but there’s really no acceptance of it. The only acceptance she can find is through her relationship with Martha.” The more stoic of the two, Martha, played with poise and gravitas by Marietta Simpson, has been living at the nursing home for many months by the time Danny arrives. At a more advanced stage of Alzheimer’s, Martha has accepted the disease more than her new friend. But she’s no less frustrated by it. At times, she unravels, overcome by despair. During one sequence, Martha’s search for a pack of matches escalates into a manic episode, with Simpson frantically repeating the words, “I know, I know, I know, I know I can find it.” As her confusion and turmoil intensifies, a tempest of light and sound erupts onstage: colors flash, curtains swell, and the music grows chaotic and brambled. It’s an effective sensory display of a mind in disarray.
Terrence Casey / Penn Memory Center PMC Co-Director Jason Karlawish, MD, third from left, meets with the Sky on Swings cast and creative team in 2017. Visit www.makingsenseofalzheimers.org to hear Dr. Karlawish and Sky on Swings Librettist Hannah Moscovitch discuss PMC’s role in the creative process. INSIGHT
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The orchestral music of Sky on Swings — created by composer Lembit Beecher — achieves the remarkable goal of 2018 / 2019
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Dominic M. Mercier / Opera Philadelphia Martha (mezzo-soprano Marietta Simpson) and Danny (Frederica von Stade) enter a surrealist landscape together.
capturing Danny and Martha’s frail and complex interior lives. One of the novel ways the music conveys the discord of the women’s thoughts and memories is by “finding moments that are slightly suggestive of other styles of music,” said Beecher. “Buried within a lot of the score there’s some Mahler and Bach,” and other works. Shades of other pieces of popular music floating in the score like partial memories. “But I always tried to keep it at a level where, even if you’re looking for it, you wouldn’t be quite sure what it was,” the composer added. “I never wanted to get to a point where someone listening would say, ‘Oh right, I know that.’ Because I think that’s [what it’s like] being in the world of Alzheimer’s, where things sound sort of familiar but you have no idea why.” Throughout Sky on Swings, “the orchestral music begins to stretch out or disintegrate,” evoking a sense of mental deterioration, Beecher said. However, as the score becomes more scattered and fragmented, “the music for the two leads becomes kind of an anchor. There is something really beautiful about the strengths of their voices as a constant.” INSIGHT
The idea of “capturing” the experience of Alzheimer’s disease — and to what extent that can be done accurately in an opera — was discussed early and often during the production process, Beecher said. To learn more about the disease, the composer, along with librettist Hannah Moscovitch and director Joanna Settle, read many papers, watched videos online, and spoke with Penn Memory Center Co-Director Jason Karlawish, MD. (Visit www.makingsenseofalzheimers.org to hear Dr. Karlawish and Librettist Hannah Moscovitch discuss PMC’s role in the creative process.) That being said, “I do think we realized at some point that the piece ultimately had to be about two characters. It wasn’t going to say everything there was to say about Alzheimer’s. The thing that was most striking in all the research I did, and in speaking to people, was just how much variation there is. How every case is unique,” said Beecher. “We wanted the focus of the piece to be the experience of Alzheimer’s, and to try to get into the emotional and psychological state of someone who has Alzheimer’s. Ultimately, science can only tell us so much,” he added.
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Frederica von Stade agreed: “There are common denominators, but the experience and the degree of dementia is different for every single person that has it. Above and beyond everything, this is a story about two women and their kids.” What the cast and crew eventually fully realized was just how prevalent Alzheimer’s disease is in modern America. Being so weighted with pain and trauma, some patients and loved ones choose not to talk about the disease— which can make it seem rarer than it is. But with 5.7 million Americans currently living with Alzheimer’s, the disease and its effects are nearly ubiquitous. Learning this was instructive and powerful for the crew, Beecher said. “We were doing a talk about [Sky on Swings] a week or two ago,” he recalled, and, at one point, director Joanna Settle said, “You know, people often wonder about your qualifications when you’re doing a piece about a specific topic. But with something like Alzheimer’s, all you really need to do is lift up your head. It’s all around you.” “That’s incredibly true,” said Beecher. 2018 / 2019
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Why Enroll in PMC Research? If you want to help speed up the search for Additionally, you can enroll in the PMC Brain treatments for brain diseases, research is the Health Research Registry, a confidential dafastest way to find treatments that work. tabase of volunteers who are at least 60 years old and have normal memory, mild cognitive At PMC, we conduct numerous studies relat- impairment or Alzheimer’s disease. It serves as ed to Alzheimer’s disease, mild cognitive im- our primary research recruitment resource. pairment (MCI), cognitive aging, and lifelong brain health. Some of our currently enrolling To learn more, contact Terrence Casey at 215studies are detailed below. Eligibility varies for 898-9979 or terrence.casey@uphs.upenn.edu each clinical trial. or visit pennmemorycenter.org/registry.
The Longitudinal Early-Onset Alzheimer’s Disease Study The Longitudinal Early-onset Alzheimer’s Disease Study (LEADS) is a non-treatment national research initiative for adults diagnosed with earlyonset cognitive decline and cognitively normal adults. Researchers will collect data from both groups in order to better understand early onset Alzheimer’s disease and other causes of early onset cognitive decline. The study will look at the relationship between clinical, cognitive, imaging, genetic and biomarker tests to better understand early onset cognitive decline. This study is open to individuals age 40 to 64 with a diagnosis of MCI due to Alzheimer’s disease (AD) or probable AD dementia OR individuals age 40 to 64 with normal cognition. Participants must have a reliable study partner who can provide information to our research staff about the participant’s functioning and accompany the participant to study visits for the duration of the study. Participants must be willing and able to complete an MRI scan, PET scans, and other study procedures.
The PEGASUS Study The PEGASUS study is a Phase II clinical trial for older individuals with a diagnosis of probable Alzheimer’s disease (AD) or mild cognitive impairment (MCI) due to AD. The primary objective of this study is to evaluate the safety and tolerability of the study drug, AMX0035. AMX0035 is an investigational drug and is not FDA-approved. The study will measure the effect of the medication on biomarkers (biological markers) associated with neurological damage by assessing cerebrospinal fluid (CSF) from all volunteers. Eligible individuals are age 55 to 89 with a diagnosis of probable AD or MCI. Participants must have a reliable study partner who knows the participant well and sees him or her often, who will attend some study visits, and who will provide information about the participant during the study. Participants must be willing and able to complete all assessments and procedures, including two MRI scans and two lumbar punctures.
For more information on these studies, contact Laura Schankel, MS, (left) at 215-349-8727 or laura.schankel@pennmedicine.upenn.edu or Grace Stockbower, MPH, (right) at 215-746-3949 or grace.stockbower@uphs.upenn.edu. INSIGHT
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Generation I and II Studies
The Generation I and II studies are clinical research studies for individuals ages 60 to 75 with an increased genetic risk of developing clinical symptoms of Alzheimer’s disease. The Generation I study is for cognitively normal individuals who have two copies of the APOE4 gene. Participants are enrolled through an online registry called the Alzheimer’s Prevention Registry. Interested participants can visit www.endalznow.org/genematch to join. The Generation II study is for cognitively normal individuals who have at least one copy of the APOE4 gene. Participants can be enrolled at the Penn Memory Center. Participants may receive study drug CNP520 or a placebo (a substance with no therapeutic effect). CNP520 is not FDAapproved and is investigational. For more information, contact Jonnie Handschin at jonnie.handschin@uphs. upenn.edu or by calling 215-746-2559. INSIGHT
The Medial Temporal Lobe Study
The MTL study seeks to better understand age-related changes in brain structure and function and to compare this with the earliest changes of Alzheimer’s disease. This study will take place over three years. Participants must be ages 21-59, fluent in English, cognitively normal, and able to undergo two MRI sessions over two years. Study procedures include two MRI scans at baseline and at a two-year follow-up and computerized cognitive testing at baseline, one-year follow-up, and two-year follow-up. For more information, contact Jacqueline Lane at (215) 662-7057 or at jacqueline.lane@uphs.upenn.edu.
Risk Evaluation and Education for Alzheimer’s Disease – the Study of Communicating Amyloid Neuroimaging
REVEAL-SCAN is a non-treatment clinical study in which subjects can learn two distinct results: the result of an amyloid PET scan and a personal estimated risk of developing Alzheimer’s disease dementia by age 85. Researchers study how participants interpret, cope, and adapt to the information by measuring health behaviors and habits over time in the study. Adults ages 65 to 80 with normal cognition who have a first-degree relative affected by Alzheimer’s disease or dementia may be eligible to participate. For more information, contact Melissa Esparza at 215-882-4421 or at melissa.esparza@uphs.upenn.edu.
The Alzheimer’s Disease Neuroimaging Initiative 3 Study ADNI3 is a non-treatment, longitudinal, clinical research study that will study subjects for up to five years to determine the best ways to measure disease biomarkers, as well as pathology and functional and cognitive decline if it occurs. Those who are ages 65-85 and have normal cognition are eligible for the study, as well as those who are ages 55-90 who have a diagnosis of MCI or AD. Participants must be willing and able to have regular imaging and biomarker collection, and must have a reliable study partner. For more information, contact Jessica Nuñez at 215-662-4379 or at jessica.nunez@uphs.upenn.edu.
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Penn Memory Center Staff News Penn Memory Center received the ARTZ Philadelphia’s Caring Community Award at a community exhibition and reception in October. The Caring Community Award is offered to organizations that have worked with ARTZ Philadelphia and are notable for their promotion of quality of life enhanced specifically by interaction with the arts. In April, the Center for Advocacy for the Rights & Interests of the Elderly (CARIE) presented its annual Spirit of CARIE Award to legendary Philadelphia Inquirer sports columnist Bill Lyon, to Jason Karlawish, MD, Co-Director of the Penn Memory Center (also Mr. Lyon’s physician), and to the Penn Memory Center.
Shana Stites, PsyD (center), a Penn Memory Center Scholar, was awarded the Dale Schenk Alzheimer’s Association Research Roundtable Grant Award in February. “As the field moves toward earlier detection of Alzheimer’s, Dr. Stites’ research will help inform changes in policies and practices for interventions designed to improve the quality of life of persons who have been identified as being at risk for Alzheimer’s but who have not yet developed symptoms,” said Heather M. Snyder, PhD (right), Senior Director of Medical and Scientific Operations at the Alzheimer’s Association. PMC Postdoctoral Scholar Karolina Lempert, PhD, organized and chaired a symposium at the Society for Neuroscience conference in November in San Diego, CA, titled, “Human Cognition and Behavior: Decision Making and Cognitive Aging.” INSIGHT
PMC Scholar Laura Wisse, PhD, was selected to present the 2018 Sanjeev Kumar Memorial Lecture at the annual Biomedical Postdoctoral Council Symposium in November. In her lecture, Dr. Wisse discussed her work on the effects of Alzheimer’s disease and aging on the hippocampus using a newly developed postmortem atlas. Dawn Mechanic-Hamilton, PhD, ABPP/CN, PMC Director of Cognitive Fitness Programs and Neuropsychological Services, was principal investigator on a Penn Institute on Aging pilot grant and Co-Investigator on an Association for Frontotemporal Degeneration pilot grant to develop and test an app for increasing goal-directed behavior in individuals with mild AD and mild bvFTD. She published papers on detecting and understanding cognitive, motor and sensory change in aging and mild cognitive impairment, and she developed a monthly seminar series for advanced neuropsychology trainees. Mahdieh Hosseini completed the Penn Minority Scholar in Aging Research program this past summer. She worked with PMC neurologist Roy Hamilton, MD between her first and second years of medical school, studying how neurostimulation can help improve language skills in patients with language problems due to neurodegenerative disease. Victor Ekuta is a current Penn Minority Scholar in Aging Research. He is working with Dr. Roy Hamilton and Dr. John Medaglia to explore the potential application of transcranial magnetic stimulation to aphasia recovery. This year, Alison Lynn, MSW, LCSW, earned her license in clinical social work. Lynn is now the Associate Director of Social Work. Other new titles in 2018: — Grace Stockbower, MPH, is Research Project Manager. — Terrence Casey is Communications and Marketing Manager. — Joyce Lee is Communications Assistant.
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New faces at the Penn Memory Center PMC Scholars
From left: Cara Fallon, PhD, MPH, Mohamad Habes, PhD, Emily Largent, PhD, JD, RN
Research Coordination
Minority Scholars in Aging Research
Physician Assistant
Victor Ekuta (left) and Mahdieh Hosseini
Sharon Best, PA-C, MHS
Social Work
Clinical Fellow
Lauren McCollum, MD
Clockwise from top left: Sarah Bujno, Nora Garland, Laura Vargas, Matt Volpe Clockwise from top left: Mara Abera, Matthew Ferrara, Jonnie Handschin, Sean Lydon, Mitali Purohit, Laura Schankel, MS
Patient Services
Neuropsychology Lauren Bennett
Communications
From left: Janissa Delzo, Linnea Langkammer, Sharnita Midgett
Intern Clockwise from top left: Kendra Andrew, Keisha April, JD, Sarah Friedman, MA, Jillian Tessier
Jeanine Gill
With thanks to our student interns this year: Adam Adnane, Erin Alessandroni, Olivia Bernal, Mariya Bershad, Maya Cantu, Carlos Carmona, Salena Cui, Rachel Fromer, Stephanie Gallagher, Anna Gurian, Kimmy Halberstadter, Emmanuel Henry-Ajudua, Danielle Kennedy, Audrey Krall, Danielle Lorenz, Gary Mapp, Kaleah McIlwain, Ana Morena, Damien Sears, and Kristen Shelle
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The ABC Experience
With hundreds of participants returning year after year, the Aging Brain Cohort is by far our largest, longest study. by Linnea Langkammer and Joyce Lee
S
andra Shulan is sitting next to her partner, Harry, in the Penn Memory Center (PMC) waiting room at the Perelman Center for Advanced Medicine. She isn’t nervous. In fact, she’s quite looking forward to it. Her first ABC study visit. Marianne Watson, then the study clinician, greets Shulan and leads her through the glossy white hallways. Together, they enter an exam room with high ceilings and a wall of windows overlooking a railway. The windows fill the room with natural light. The ABC (Aging Brain Cohort) study is the largest and longest of the studies conducted at PMC. A longitudinal observational study, ABC sets out to better understand Alzheimer’s disease, mild cognitive impairment, and healthy brain aging.
Linnea Langkammer / Penn Memory Center Florence Collins-Hardy (left) with her husband, Robert. Collins-Hardy has been an ABC study participant since 2014.
much of their medical data. Some data resulting from medical tests, like an abnormality on a magnetic resonance imaging (MRI) brain scan, will be Data from the ABC study is shared revealed to the participant. But othwith researchers across the naers, like biological markers from tion via the National Alzheimer’s a positron emission tomography, Coordinating Center, established (PET) scan still undergoing invesby the National Institute on Agtigation, may not be. It’s imporing in 1999. tant for the participant to understand this, going into the study. Shulan’s first ABC visit begins Sandy Shulan with the daunting pile of con“Will Harry be your study sent forms. There’s a lot for her to go partner?” Watson asks. “Yes,” Shulan over today: detailing the annual visit, replies with a warm smile. scheduling brain scans, and perhaps most importantly, managing her exFor the ABC study, a person who pectations. knows the participant well is critical because that person can speak to the Specifically, the ABC study is a reparticipant’s memory and thinking search study, first and foremost. It asks skills, mood, and functioning. What’s research participants to contribute key, if the participant does experience INSIGHT
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cognitive decline over the course of participation in ABC, is that the study partner is able to point out signs of decline and, in more severe forms of dementia, speak up for the participant. Despite the focus on health data and logistics, Shulan and Watson’s conversation soon turns more personal. Shulan does not have Alzheimer’s disease, but she wonders if she’ll develop it in years to come, if she’ll inherit it from her mother. “Maybe I was losing my mind, which was always so sharp,” Shulan says. “My mom could never admit she had Alzheimer’s... but I’m not like that.” Shulan discusses what she describes as the dulling of her cognition, like for-
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Happy trails, Marianne! Marianne Watson, RN, retired in July 2018 after serving the Penn Memory Center as senior research nurse since its inception 25 years ago. At the time of her retirement, Watson was the only person to have met and engaged with every single research participant in the ABC study (formerly “NACC”). “The NACC program and the Penn Memory Center is very much Marianne,” PMC Co-Director David Wolk, MD, told research participants at the annual Research Partner Thank Joyce Lee / Penn Memory Center You Luncheon earlier this year. “Marianne has been such an Marianne Watson (center) poses with Penn Memory integral part of it over the years, and many of you identify Center Co-Directors Jason Karlawish, MD, (left) and David Wolk, MD, at her retirement celebration. our program most with her.”
Meet the ABC Team David Wolk, MD
Principal Investigator PMC Co-Director
Felicia Greenfield, LCSW
PMC Executive Director 215-662-4523 felicia.greenfield@uphs.upenn.edu
Sharon Best, PA-C, MHS
Research Physician Assistant 215-662-4373 sharon.best@uphs.upenn.edu
Matthew Ferrara
Clinical Research Coordinator 215-615-3159 mferra@pennmedicine.upenn.edu
Hannah McCoubrey
Psychometrist 215-573-0844 hannah.mccoubrey@uphs.upenn.edu
Mitali Purohit
Psychometrist 215-360-0272 mitali.purohit@uphs.upenn.edu
Alison Lynn, LCSW
Associate Director of Social Work 215-360-0257 alison.lynn@uphs.upenn.edu
INSIGHT
getting an actor’s name with friends. But clinicians assure her, for now, it’s a sign of normal aging. Watson wraps up her interviews with both Shulan and her partner, who comes in later for his portion of the visit. For two and a half hours, they go through a lot: Shulan’s family history with Alzheimer’s disease, her current complaints of cognitive strain, and the battery of neuropsychological testing. After the marathon, everyone is ready for lunch.
Diving into the Data “The ABC study asks a lot of its participants, but each part is necessary,” David Wolk, MD, principal investigator for the study, explains. “For us to really get to the underlying aspects of Alzheimer’s disease, we need to take a closer look at the medical data provided by the research participants: cognitive tests, the brain scans, the reports from the study participants and partners. That’s where our research begins.” For these reasons, an MRI scan is one of the most fundamental requirements for the ABC study. Additional studies throughout the year may also include PET scans, lumbar
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punctures, and further cognitive testing. Terraine Smith, five-year veteran of the ABC study, says she doesn’t see requirements like the MRI as burdensome. When she goes in for her scans, the technician plays music for her. “They know I love Barbara Streisand,” she laughs and says. During an MRI scan, a strong magnet creates detailed images inside the body, allowing doctors to differentiate between forms of dementia and normal aging. Although the tight space and loud noise may deter some participants, MRI scans are vital for understanding the brain. Beyond the MRI, Smith has participated in all the tests and studies ABC has asked of her. She has even enjoyed the long wait before a PET scan. PET scans use a radioactive tracer that is injected and binds to specific molecules in the body. After the tracer is absorbed, which takes about 60 to 90 minutes, the body is scanned for the presence of these molecules. For the ABC study, the tracers used are for amyloid and tau
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Continued on page 16 page 13
ABC Main Study
Annual V
Jim arrives at PM who is his study assistant, who is sent, when he ca agreements to pa naires, a blood d about his memor about Jim’s mem in total. Jim and for his annual vis
Recruitment
Jim attends a health fair in West Philadelphia, where Alison Lynn, associate director of social work, is representing Penn Memory Center. Jim receives information on healthy brain aging from Alison and learns about the latest research studies on cognitive aging and decline. Jim becomes interested in joining these research initiatives, so he signs up for the PMC Research Registry. (The social work team also recruits patients with MCI or dementia from PMC into the ABC study.)
Enrollment
Jim receives a call from Matthew Ferrara, clinical research coordinator who works on the ABC study. Matthew answers many of Jim’s questions about the study, including why his data is important for researchers, and schedules Jim for an appointment to come in for his first ABC study visit.
Aging Brain Cohort (ABC) Study The Aging Brain Cohort study is a study that collects ongoing individual data from volunteer participants across the United States for scientists around the world. It is an invaluable resource for research into Alzheimer’s disease, mild cognitive impairment, and brain health. The study was formerly known as the National Alzheimer’s Coordinating Center (“NACC”) study, and is funded by the National Institute on Aging (NIA). The ABC study recruits adults who are at least 65 years old with normal cognition, mild cognitive impairment, or mild to moderate Alzheimer’s disease or related dementia. Participants are recruited with a study partner, a person who knows the participant well and can give researchers reliable information on the participant. Here, we outline what one participant (“Jim”) goes through within the ABC study. Jim is a 75-year-old with normal cognition, an active lifestyle, and a deep commitment for participating in Alzheimer’s disease research studies as his father had Alzheimer’s disease dementia. Read about Jim’s journey through the ABC study. Infographic / Joyce Lee
Lumb
A lumbar samples ce inserted b amyloid a in early st tailed con ABC visit, Sanjeev Va
ABC Subs
Visit
MC for his first ABC visit. He is accompanied by his wife, partner. They meet Matt and Sharon Best, physician a clinician for the ABC study. Jim’s visit starts with conan ask questions about what goes on in the study and signs articipate. Jim’s visit schedule consists of health questiondraw, cognitive testing, a neurological exam, and interviews ry and thinking skills. His wife is also asked questions mory, mood, and functioning. The visit takes about 3 hours his wife leave with a commitment to come in every year sit.
MRI Scan
Shortly after his first ABC visit, Jim is contacted by clinical research coordinator Melissa Kelley for magnetic resonance imaging (MRI) scans. She explains to Jim how these MRI scans are critical in helping researchers and clinicians track the brain changes that occur in cognitive aging and decline. Jim comes in for both a 7T and a 3T MRI scan (Tesla or “T” is a measure of magnetic strength), and agrees to follow up on these scans every two years.
PET Scans
Amyloid and tau PET scans provide clinicians with enriched information on cognitive decline. Clinical research coordinator Jacqueline Lane contacts Jim after his ABC MRI study visit to explain the PET scan studies. A positron emission tomography (PET) scan can indicate if levels of amyloid and tau protein are elevated in the brain. Elevated levels may be present in people without cognitive symptoms, but as these scans are still the subject of ongoing research, cognitively normal individuals may not obtain the results of their scans yet. Jim decides to undergo these scans and makes his appointments with Jackie.
bar Puncture
puncture (also known as an “LP” or “spinal tap”) erebrospinal fluid (CSF) through a hollow needle between the vertebrae. An LP can detect levels of and tau proteins in CSF, which may show changes tages of Alzheimer’s disease. After Jim has a denversation with Matt and Sharon about LPs at his , he schedules an appointment with neurologist Vaishnavi, MD, PhD to complete the procedure.
studies
Brain Donation
At the ABC visit, Sharon Best explains the importance of brain donation and Jim agrees to consider donating his brain when he dies. Brain tissue samples from people whose data (e.g. brain scans, cognitive tests) were collected when they were living are critical for researchers like pathologist Edward Lee, MD, PhD to visualize the changes in the brain with cognitive aging and decline. Penn’s Brain Bank is an important resource for researchers at Penn and other institutions to study neurodegenerative disease.
Other Studies
Jim also participates in other ABC-related studies. For example, the Metaphor study examines changes in language abilities with age, while the Learning & Decision-Making study looks at economic choices in older adults. Additionally, the Memory Game study is piloting an app to track memory skills. These studies help researchers like neuropsychologist Dawn Mechanic-Hamilton, PhD, examine innovative measures and tools to track, understand, and target cognitive decline.
MTL Study
As Jim has normal cognition, he is asked to participate in the MTL study by clinical research specialist Arun Pilania. This study involves computer-based tasks that engage the medial temporal lobe (MTL), a brain region involved in memory processes. This data, along with MRI scan structural information, helps researchers more closely examine the MTL and its relationship to memory impairments in neurodegenerative disease.
Researchers look to apps for tracking cognition
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proteins, which accumulate in the brain in Alzheimer’s disease. Smith reflects on her experience with the PET scans. “You have to wait a bit after the injection,” she says. “I got some time to relax, personal time. Then I went to sleep.”
Joyce Lee / Penn Memory Center PMC intern Mariya Bershad reviews the app with a research participant. by Joyce Lee
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ew to the Penn Memory Center in 2018 is the Memory Game app, an initiative led by Director of Neuropsychological Services Dawn Mechanic-Hamilton, PhD and Co-Director David Wolk, MD. It’s part of an ambitious, innovative project looking at how apps can test and track cognitive skills in the progression of neurodegenerative disease. The duo launched this project to build on traditional cognitive testing and find reliable, sensitive ways to detect cognitive changes, even before clinical symptoms are apparent. In the U.S., increasing numbers of older adults are owning and using smartphones. As a result, “there’s been increasing interest in the field to use apps to test cognitive skills,” Dr. Wolk said. The Memory Game app structure is based on the card game Concentration, and the gameplay is simple. Players are shown cards depicting images of common items. After a few seconds, the card faces are hidden. Players must INSIGHT
rely on their memory to match card pairs showing the same images. This “gamification” is important. “The goal is to get patients to play it a lot, and enjoy playing it as well,” Dr. Wolk said. Behind the scenes, the app is busy collecting data. The memory skills tested by the app aim to be sensitive to some to the earliest manifestations of Alzheimer’s disease.
In her dedication to the ABC study, Smith has even had an lumbar puncture (LP). During an LP, a hollow needle is inserted between the vertebrae in the spine to remove a sample of cerebrospinal fluid. The sample is then analyzed for amyloid and tau protein levels. Smith says she can understand why some people are hesitant to undergo the procedure, but said it wasn’t a problem for her. Above all, Smith’s efforts are contributing to the important data Dr. Wolk and his team are collecting to advance Alzheimer’s disease research. Continued on page 17
Compared to pencil-and-paper tests, there’s a distinct advantage to apps. Not only can the game continuously increase in difficulty, it can also collect and store large amounts of data, and analyze finer measures like reaction times. And if players take this game home and play it once every few days, then the data collected can reflect how they perform on a day-to-day basis. The app is being piloted in the Aging Brain Cohort (ABC) study. So far, about 26 ABC study participants have tried out the game, and a majority of them have said they enjoyed playing it. To learn more about the app, visit www.pennmemorycenter.org/app.
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Damari McBride / MyTypicalDay.org Terraine Smith also participated in PMC’s Typical Day photo elicitation study. 2018 / 2019
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Reasons and Representation In 1999, Florence Collins-Hardy’s husband was diagnosed with frontotemporal dementia (FTD). That was when she first became involved with the PMC. After he passed away in 2005, Collins-Hardy stayed connected with the PMC community and eventually enrolled in ABC herself. Collins-Hardy is steadfast to her commitment to the study: “to the end and then some,” she says. For Collins-Hardy, this commitment has led her to agree to donate her brain to the study. “It’s the only way to connect the biological to my psychological tests,” she explains. Brain donation is an essential part of the ABC study. This, compiled with the cognitive tests, MRI and PET scans, and LPs, will provide researchers with better understanding of the brain in aging and neurodegenerative disease. Whether an individual has Alzheimer’s disease upon entering the study, develops it during, or remains cognitively normal throughout, the brain sample can reveal how the disease works at a detailed, biological level. Collins-Hardy’s other reason for enrolling in the study is simple: “We need more people of color in research,” she explains. “I tell other people of color...
Joyce Lee/ Penn Memory Center ABC participant Doloris Bonds (center) and her daughter meet with physician assistant Sharon Best, PA-C, MHS, at the Perelman Center for Advanced Medicine.
get involved in research. It’s going to help us to have medications suited for us.” Collins-Hardy is enthusiastic and even has a speech prepared to convince others to join the research effort. Smith says she feels similarly. She says her contribution is small but that she is compelled to help her fellow man. “It’s the only thing I can do, so why not?” Smith also enjoys her interactions with the research coordinators and clinicians: “They make me feel like a human,” she says. After explaining her reasons for participating in ABC, Collins-Hardy notes, “My experience at PMC has
Our Guide to Healthy Aging 1. Eat a Mediterranean diet: More fish, vegetables, fruits and legumes, fewer sweets and less red meat 2. Exercise: 30 minutes per day, three or four times per week, at a moderate or vigorous intensity 3. Stay engaged socially: Keep in touch with friends, family, and your community. 4. Stay active mentally: Read more, or try to learn a new skill or language. Don’t invest in brain games or crossword puzzles unless you enjoy them! INSIGHT
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been wonderful, meeting different people. But it’s also informative. They keep you up to date on new meds and improvements. I can’t say enough positive things.” As part of the ABC study, participants join the broader PMC community. This includes regular informational updates from the team, such as weekly newsletters and annual magazines, in addition to an invitation to the Thank You Luncheon held every year for participants to learn about the latest in Alzheimer’s disease research. It’s a way for PMC to give back to the participants that give to the study.
After the Diagnosis In the course of participation in the ABC study, if a participant is later diagnosed with Alzheimer’s disease or another neurodegenerative disease, he or she can be brought into the PMC clinical realm. ABC participants also have access to PMC’s team of social workers and growing suite of programs such as psychotherapy, Cognitive Fitness classes, and Memory Café. “If something happens with my brain, [PMC is] the first to help,” Smith says. 2018 / 2019
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Shaping Copper, Making Meaning: An Art of the Mind exhibition by Carl Duzen
by Joyce Lee
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ramed copper artwork hangs in the hall outside the Penn Memory Center clinic. Some, like “Family Circle,” evoke memories of love and devotion. Others, like “Chalices,” awe viewers with vibrant, playful shapes, and colors, shades of copper pulled from the inside of an abandoned television or other electronics. “Carl Duzen: Shaping Copper, Making Meaning” is the Penn Memory Center’s latest ‘Art of the Mind’ exhibition and a celebration of creativity from PMC patient Carl Duzen and his wife, Susan Jewett.
Terrence Casey / Penn Memory Center From left: Dr. David Wolk, Susan Jewett, Carl Duzen, Dr. Jason Karlawish. Below: One of Duzen’s works on display at the Perelman Center for Advanced Medicine.
At the exhibition’s grand opening, Duzen’s neurologist, Dr. David Wolk, shared the story of when he first met the couple four years ago. When Dr. Wolk, now PMC co-director, learned of Duzen’s hobby of deconstructing old TV sets, he wondered if he should be concerned about it as a physician. But soon he found that this “work,” as Duzen called it, brought great pleasure to the retired physics teacher.
“In the same way that a powerful prescription can change people and make them better,” Dr. Karlawish hopes that this ‘Art of the Mind’ exhibition may also be able to touch and transform those who come to see it.
“He really had the eye to see that there was a real texture, patterns, and colors that came from the materials he was collecting, that were just really intriguing to look at,” Dr. Wolk said. “And it was his wife who said: ‘Well, we can actually form portraits of this found art.’” The opening of the exhibition drew a crowd of the couple’s close friends and members of the PMC community.
Addressing the audience with her husband by her side, Jewett said, “This is a terrible disease, as all of you know and as we’re finding out. They call it a rough road. But what no one ever says is that the disease leads you to meet people and institutions, to deepen friendships with neighbors and longtime friends. These are like golden moments along that road.” The display of works draws attention not just to the diagnosis of Alzheimer’s disease, but also beyond, what living with it can be like. As PMC Co-Director Dr. Jason Karlawish said in his opening remarks, “Alzheimer’s disease is a brain disease, but it is a problem of the mind. And by that I mean each of us has to make sense of this most unusual disease — what it’s like to have it or to live with someone with it.”
“The way we do that is through the world around us,” he said. “That gives us the language, the stories, the images that help us interpret what’s going on to ourselves and the ones we love.”
Duzen and Jewett are the subjects of an upcoming documentary by independent filmmaker Mike Attie in partnership with Teya Sepinuck, founder and artistic director of Theater of Witness.
See more of the exhibition and hear from the artists: Visit www.pennmemorycenter.org/duzen INSIGHT
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An ongoing duet with the Curtis Institute
C
“The first year, Arlen would go with another graduate student and play for patients, interact with them, and hear about what kind of music they like,” Javian said.
Violist Rimbo Wong, then a student at the Curtis Institute of Music, worked with PMC to bring free classical performances to West Philadelphia. With her involvement in “Project HOME,” she hoped to shatter the stereotype that classical music is for exclusive audiences.
Hlusko’s passion was for finding creative ways for music to serve and enrich her community. She also performed at the 2015 PMC Research Partner Thank You Breakfast and at a Memory Café in 2016, kicking off a growing list of Curtis students who performed classical music and created a relaxing environment for attendees.
by Sharnita Midgett
lassical music has filled the homes of Penn Memory Center patients since 2016, thanks to a unique partnership with a worldclass conservatory.
PMC and Curtis have collaborated since 2015, sharing successful programs such as Memory Café, caregiver retreats, the annual Thank You Breakfast and Luncheons, Creative Expression Through Music, and Project HOME. “The partnership between Curtis and the Penn Memory Center is a cherished one and yet another creative means for people to help understand, cope with, and make meaning out of their experiences,” said PMC Executive Director Felicia Greenfield, MSW, LCSW. Curtis is a Center City-based conservatory that trains students to be not just world-class performers, but also leaders who will make a profound impact within local and global communities.
“It has been a joy and a privilege to be a part of this program,” Volpe said. “Each class session, I was inspired by the positive engagement of the participants and the collaborative vocal and rhythmic creations of the whole group.” As the relationship between Curtis and PMC continues to develop, Javian looks forward to further involvement in research related to art’s impact on patients and caregivers and how music can improve quality of life.
A more recent collaboration with Curtis has been Creative Expression Through Music. The interactive program showcased the expressive power of music composition and had participants take on group singing, drum circles, active listening, and the creation of new musical works. PMC social work interns Matthew Volpe and Sarah Bujno worked with Curtis Fellow Nicholas DiBerardino to offer a four-session pilot program this past fall, and they are ramping up to research the impact of music composition within PMC’s patient population this spring.
Terrence Casey / Penn Memory Center Arlen Hlusko in 2015
“The students are not only incredibly talented, they are engaged and enthusiastic, always willing to share their personal stories and teach us a thing or two about their beautiful instruments,” Greenfield said. Mary Javian, Curtis Chair of Career Studies, has coordinated students’ work at PMC. She recalled how cellist Arlen Hlusko had contacted PMC about ways to connect with patients with Alzheimer’s disease. INSIGHT
Linnea Langkammer / Penn Memory Center Students from the Curtis Institute of Music perform at the December 2018 Memory Café.
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Bio-Age will change who we are (and if we have to take off our shoes at the airport)
by Jason Karlawish, MD
Editor’s Note: This column originally appeared on Forbes.com. It has been edited for print. You can find the complete edition and more columns at forbes.com/sites/jasonkarlawish.
H
appy birthday to you!”
Every year, on one and only one day of the year, these words are sung to you. Every year, you celebrate your birth and, as well, count your age. We use the count of the Earth’s rotations around the sun like the rings on a tree stump to measure how old we are. This celestial number is a powerful influence. It sets expectations: crawl by one, walk by two, finish school sometime around 18 to 25 years. Then come expectations for raising a family, working, and, perhaps most fraught, planning what to do with the time one has left. Implicit in that planning is an expectation that health will decline, that diseases of aging will set in. These individual expectations translate into social policies as well. We use chronological age to set when to retire, to receive social security insurance, and to keep our shoes on as we pass through airport security (75 years). Chronological age is a kind of account against which we bankroll our lives. But is charting our age by counting the number of times the Earth takes to orbit around the star that heats it the best way to answer the question, “How old am I” Or, to put it personally, “Am I really 51?” The answer to this question shapes me, my behaviors, and the ways society treats me. INSIGHT
Chronological age seems too simple. In his essay “As Old as the Century: V.S. Pritchett at 80,” the 80-year-old V.S. Pritchett concluded, “Yet, behind our acting there is also the knowledge that age does not march mathematically year by year with the calendar. One’s real age stands still for large blocks of time.” The “acting” he was reflecting on is our increasingly desperate performances to buttress ourselves from the allied forces of frailty and dementia. All the world’s a stage. The problem is that we don’t know how many scenes there are left before the final act. The aging narrator in Andre Aciman’s “Call Me By Your Name” sums up our dilemma: “I suddenly realized that we were on borrowed time, that time is always borrowed, and that the lending agency exacts its premium precisely when we are least prepared to pay and need to borrow more.” The fact is we’re engaged in a kind of existential accounting gimmick. We use our chronological age to intuit how many chronological years we have left. For centuries, this worked well enough. But then, over the past 100 years, some-
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Lee Simpson
thing changed. We’re living many more chronological years. At 65 years of age, U.S. women and men have life expectancies of 19.7 and 17.0 years, respectively. We’re living longer, but are we living better? That is, have our 20th century advances in biomedical technology simply extended the period of sickness, or are we in fact healthier than we used to be? If the answer is that we’re healthier, then today’s 65-year-old is in some sense “younger” than a 65-yearold in, say, 1988. Patients feel this. Some tell me how, for example, at 84, they’re living on borrowed time. Others at that same age say they don’t feel they’re as old as they are. They feel like they’ve got more to spend. Each has a sense of Pritchett’s “real age.” A paper in the April 2018 issue of Demography, suggests that we can calculate this real age. Our biological age, or what I’ll shorten to “bio-age” to juxtapose it with “chrono-age,” may be better than the count of our chronological age to understand how “old” we are and to tell us how much time we have left.
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What’s bio-age? It’s the age that best corresponds to how old our organs are. It’s a kind of measure of the time to when a healthy organ becomes impaired. Using data drawn from two cohorts spread over 20 years of time, Morgan Levine from Yale University and Eileen Crimmins from the University of Southern California show that our bio-age has been decreasing. As we accumulate fewer biological years, we live more chronological years. In other words, 60 is the new 50. If you’re feeling like you’re in a graduate-level demography / philosophy / mathematics mash-up seminar, bear with me. These complicated calculations and twists on the meanings of age and aging are conveying a powerful and simple message. Using a measure of our bio-age to plan our lives and social policies such as retirement might be more sensible than counting our years spinning around the sun. Bio-age is calculated. Levine and Crimmins used measures taken from six physiologic systems, four of which we’re quite familiar with — the kidney, heart, liver and lung. The other two are metabolic (think diabetes) and inflammation. Plug these, together with the person’s chronological age, into the Klemera and Doubal algorithm, and out comes the number — the “bio-age.” Their data on tens of thousands American adults’ health came from the 1988 to 1994 and the 2007 to 2010 waves of the CDC’s National Health and Nutrition Examination Survey, known as NHANES, pronounced “n-haynes.” NHANES is an annual survey of randomly selected Americans that includes physical exams, interviews, and blood tests to provide an objective assessment of the health and nutritional status of adults and children in the United States. The authors discovered that, between INSIGHT
these two epochs, our bio-age has been declining. In 2010, on the day a nonHispanic white man blew out 60 candles on his birthday cake, his bio-age was the same as that of a non-Hispanic white man who was blowing out 55 candles on his cake in 1990. The old are in fact younger.
Levine and Crimmins used is that it enters the results of simple tests (five of the six tests are routinely gathered in annual medical exams) into a formula. This calculation, which once took months of punch card computing, is now executed in the strike of the “Enter” key on the keyboard beneath your right pinky.
In a prior study, Levine has shown that bio-age is a better predictor of mortality than chrono-age. To further support that this isn’t just some bio-numerology, she and Crimmins divided their data into bins described by common habits and characteristics known to increase illness and the risk of death such as smoking, obesity, hypertension, and high cholesterol. These explained differences in bio-age. The bio-age of a non-Hispanic white man of 60 chronological years who is obese and smokes is about the same as it was 20 years ago.
With bio-age now so easily accessible, just as chrono-age once organized our lives, bio-age will transform how we think of ourselves and the ways we ought to live .
Bio-age predicts mortality better than chrono-age and it reflects changes in our health. That’s a powerful measure. So why don’t we use it? When I was in medical school, and a careful history was the bedrock of medicine, I was taught that the opening line of my summary of a patient’s history of illness should include an assessment of whether the patient “appeared his stated age.” For example: “This is a 73-yearold woman with four days of shortness of breath and fever who appears older than her stated age…” I assessed this essentially by looking at the patient, by trying to see aging beneath the skin. It was not until the last 20 years that we had the tools to measure biological age, including advances in biochemistry and genetics and, even more importantly, technologies that allow rapid analyses of massive data sets. An internet search shows there are many ways to measure, and monetize, your bio-age. What’s notable about the approach
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“This is a chrono-73 and bio-66-yearold woman with four days of shortness of breath and fever…” Her physicians might provide her more “aggressive” care than they would to a patient whose bio-age is greater than her chrono-age. A chrono-65 / bio-70 will have very different expectations of aging than, say, her friend who’s a chrono-65 / bio-60. They’ll make different decisions about when and how to plan savings, retirement, and where to live (how close to family or other potential caregivers). As we celebrate our bio-age (candles on a whole grain salad?) social structures organized around chrono-age will seem less and less sensible, such as chronoages for retirement, who sits at the front of the bus, and whether you can keep your shoes on as you step into the security scanner. We’re going to become a tribe of actuaries. Perhaps the most powerful reason to celebrate our bio-age is that it shows there is an accessible set of things we can do to be, pardon, younger: walk, skip the donuts and sodas, don’t smoke, check your blood pressure. Bio-age also shows the politicians the benefits of social policies that improve health, such as smoking cessation campaigns and access to health care, and the harms of their failures to address threats like obesity and inequities in access to health care. 2018 / 2019
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With gratitude, we recognize our donors Progress against Alzheimer’s disease depends on your support for our research, programs and patient care.
A
lzheimer’s disease threatens to become the largest and most costly public health crisis ever faced by our nation. This hard reality makes your tax-deductible gifts and bequests even more vital now to aid our research and nurture our advances. We recognize donors here and on our website at www.pennmemorycenter.org/gifts. Planned giving, matching gift programs, and a range of tax-advantageous structured giving approaches are also available. To learn more about how your support can strengthen and advance the work of the Penn Memory Center, please contact Elizabeth Yannes at (215) 573-4961 or elyannes@upenn.edu. Thank you, Dr. Jason Karlawish and Dr. David Wolk Penn Memory Center Co-Directors
Gifts received between October 10, 2017 and December 1, 2018
Penn Memory Center Gift Fund General Donations
Anonymous Mr. and Mrs. Gerson J. Alexander Artis Senior Living of Lower Moreland Drs. Michael and Nancy Childs Mr. R. Bartholomew & Ms. J. Converse Mrs. Margaret A. Beretzki Ms. Geraldine M. Boyle Ms. Beth Burns Mr. John H. Byrne, Jr. Mr. & Mrs. David A. Canan Mr. William F. Cassidy & Mrs. Judith Cassidy Dr. & Mrs. Henry S. Cecil Ms. Kathleen M. Chavis Dr. Byung C. Choi Mr. Norbert Seifert & Ms. Wilma M. Chung Mr. & Mrs. James B. Crabtree Mr. Daniel Criel Mrs. Robin K. Cudrin Henry T. Dechert, Esquire & Mrs. Nancy Dechert Mr. and Mrs. Robert DeGeorge Ms. Bonnie Noel Devlin Mr. Joseph H. Donahue Mr. Harold W. Dorman Mr. Walter J. Draving Dr. & Mrs. Jerry Drew Mr. Ronald C. Dumbar Mrs. Catherine P. Durkin Mr. & Mrs. Sheldon Faktorow Mrs. Edith A. Ferris Ms. Hortensia Formoso Morrie G. Gold, MD Ms. Paula Goy-Severino Ms. Nancy W. Greytok Mr. Barry L. Grossbach & Mr. Michael D. Hardy Mr. Harry R. Hicks Mr. & Mrs. Thomas W. Hofmann Ms. Bernadett M. Hohenadel Mr. and Mrs. Michael A. Iacocca Ms. Izorie V. Irvin Mr. & Mrs. Thomas P. Jackson Ms. Rosalie Jacobs Mr. & Mrs. Edward J. Jankowsky Mr. Zeeshan R. Khan Dr. & Mrs. Soo S. Ko Mr. & Mrs. William Lawrence Mr. Carter R. Leidy, Jr. Continued on Page 25
INSIGHT
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Dear Reader: My name is Mike Childs, and I’m a former organic research chemist and chemistry instructor at Temple University. By 2014, at the age of 64, my life was becoming increasingly confused, forgetful, and some days downright goofy. My wife, Nancy, and I were devastated by my diagnosis of mild cognitive impairment (MCI), which is often, but not always, an early stage of Alzheimer’s. Fortunately, we went to the Penn Memory Center at Penn Medicine — the region’s only National Institute on Aging-designated Alzheimer’s Disease Center where patients can be evaluated, diagnosed, and treated. One of the many frustrations is that the diagnosis itself is vague and uncertain. As a research scientist, I was hungry for information, confirmation of the diagnosis, and dare I dream, some sort of action to mitigate this disease. At the Penn Memory Center, I was met with compassionate clinicians, empathetic staff, and knowledgeable trainees. The Center provided suggestions for optimizing my daily routine and offered opportunities to participate in cutting-edge research to learn more about this insidious disease. Maybe it’s a drug, maybe it’s a placebo, but definitely it’s science that leads us closer to understanding, and someday diminishing, this devastating disease. On this challenging journey, I cannot imagine where my life would be today without my wife, my family, my friends, and my Penn Memory Center team. They’ve given me the energy to resist this disease that has allowed nearly five years of fuller life with my family. These extraordinary opportunities for patients and their families, in care and research, are available to others seeking assistance at the Penn Memory Center. It is imperative that the Penn Memory Center continues its work in advancing Alzheimer’s disease and brain-aging research, education and training, and patient care. Grant funding only goes so far, which is why gifts from patients, families, and friends are vital to finding the answers we need. I am very appreciative of the support and education that Nancy and I continually receive from the Penn Memory Center. Their services are funded by ongoing, unrestricted donations from friends like you, and can advance only with your help. Your donation to the Penn Memory Center’s research and patient care programs improves the quality of life for you, your friends and family, and the community. Thank you for your consideration, and best wishes for a happy holiday season!
Sincerely, Michael Childs, PhD Resident of Cape May, NJ P.S. Make your gift today in honor or memory of a loved one. You can make your gift online by visiting www.pennmemorycenter.org/gifts. Your tribute will be displayed in the next issue of InSight unless indicated otherwise.
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In Memory of Patsy Rowe B and Aunty Tot Ms. Janifer M. Burns
L
ooking for more ongoing and unique giving opportunities at the Penn Memory Center? Contact Elizabeth Yannes in the Penn Medicine Development office at 215-573-4961 or at elyannes@upenn.edu.
Terrence Casey / Penn Memory Center Above photo: Janet Caplan (far left) listens as Penn Memory Center Co-Director David Wolk, MD, speaks at a fundraising event in 2018. INSIGHT
Mr. & Mrs. Eli Caplan
In Honor of Eli Caplan
Alice L. George, Ph.D. Sara Lee Silberman Trust
In Honor of Janet Caplan
Mr. and Mrs. Joseph Field Mr. Ofer J. Shlomo
In Honor of Barry Elson, Esq.
Mx. Celeste Acinapura Mr. & Mrs. Scott Barsky Mrs. Linda Bitetti Mr. Ronald Calvy Mr. Ted Cohn Mr. Robert A. Cornaglia Ms. Geraldine De Santis Ms. Lori Driscoll Mrs. Barbara Gatta Ms. Mary Beth Edwards
the penn memory center annual magazine
Mr. & Mrs. Martin Krimsky
In Memory of Martin Landes Ms. Nadine Flexer
In Memory of Milan Lipensky
Mr. & Mrs. Eli Caplan 2018 / 2019
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Continued from page 22
Mrs. Robin D. Librizzi Mrs. Dolores A. Lubin John P. MacDuffie, Ph.D. Mr. and Mrs. Jack G. Mancuso Mr. and Mrs. J. K. Mccammon Ms. Catherine E. McDevitt Mr. & Mrs. James McKenna Mr. George McKeon Ms. Jill Migliore Mr. & Mrs. Steve T. Min Gerald C. Montella, Esq. Ms. M. M. Mullen-Fortino Mr. & Mrs. Robert Nolan Dr. and Mrs. James H. Norton Mr. Victor Kodzo Ofori Ms. Beth R. Oknin Ks. Karen R. Ott Mr. & Mrs. John Peakes Mr. and Mrs. Brent L. Peterson Mrs. E. Reeve Peterson Mr. Robert M. Peterson Dr. Hermann W. Pfefferkorn Dr. & Mrs. Steve J. Phillips Mr. Isidore Ricciuti Mr. Brian Bergin Rigney Mr. James Rittwage Ms. Laura L. Rothkopf Ms. Frances Park-Li Rothman Ms. Julie Rpouvina Arthur H. Rubenstein, MBBCh Mr. John N. Rudolph, Jr. Ms. Michele Sands Mrs. Cornelia H. Seidel Ms. Pamela S. Sellers-Hoelsken Ms. Aelaina N. Sellers Mr. & Mrs. Jerome Shulman Mr. Andrew J. Speizman The Honorable Walter Stapleton Mr. & Mrs. William Sutton Mr. & Mrs. Jeffrey Sutton Mrs. Betty Franks Sykes Mr. Howard Tischler Ms. Grace Um Mr. & Mrs. Carl S. Viola Ms. Deborah A. Weinstock Ms. Elaine Young
Your gifts make our efforts possible. INSIGHT
Honorees In Honor of Ralph Caliri
Mrs. Bonnie Boucher Ms. Susan Ciaverelli Mrs. Penny T. Irwin Ms. Sandra M. Keiser Ms. Andrea L. Purcell Mr. & Mrs. Carl Schneider Ms. Maxine Temkin
In Honor of Mona Cheung
Mr. Jeffrey T.H. Cheung
In Honor of Julia Moore Converse Ms. Amy Converse
In Honor of Prudence Dalrymple and Ron Dunbar
Dr. Allen Myers & Dr. Ellen Myers
In Honor of Dr. Mary Ann Forciea Ms. Margaret C. Mcnally
In Honor of Dr. Jason Karlawish and Dr. David Wolk Mr. & Mrs. Daniel Leder
In Honor of Joseph Kalkbrenner, Jr. Mrs. Laurie Kalkbrenner
In Honor of Michele Langer and Dr. Alan Cohen Mr. & Mrs. Eugene Block
In Honor of Bernard Ledieu
Mr. & Ms. Bernard Ledieu
In Honor of Lillian Ludwig
Ms. Patricia J. Ludwig
In Honor of Edith Potts
Mr. & Mrs. Thomas Potts
In Honor of Steven Rosengarten
In Honor of Dave Grabel’s 80th Birthday
Mr. & Mrs. Bruce Goldenberg
In Honor of Felicia Greenfield, LCSW, Grace Stockbower, MPH and Dr. David Wolk
Mr. Neville Kallenbach & Ms. Martha Repman
Mrs. Rosalind Nathanson
Alan R. Cohen, MD
In Honor of Dr. Roy Hamilton and Anthony Rostain Mr. & Mrs. Martin Krimsky
In Honor of Dr. Jason Karlawish
Mr. & Mrs. James C. Catrickes Mr. Ford Jeffrey Levy & Ms. Cindy Shmerler Levy Mr. & Mrs. Thomas B. Morris, Jr. George H. Nofer, Esq.
the penn memory center annual magazine
In Honor of Theodore Suba
In Honor of Dr. Sanjeev Vaishnavi Dr. & Mrs. Julius J. Deren Mr. and Mrs. Joel Silver
In Honor of Marianne Watson, RN Ms. Mary C. LeFever Mrs. Betty Franks Sykes
In Honor of Margaret White and Kenneth Williams Ms. Pamela J. White
2018 / 2019
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In Memoriam In Memory of Gloria Jean Amen
Mrs. Margaret M. Conlon Ms. Jean Difurio Ms. Nancy A. Fanelli Donegan Ms. Bernadette R. Sorochen
In Memory of Eric Leonard Dodge Mr. & Mrs. Jeffrey S. Bader
Mrs. Patricia Allison
In Memory of Joseph Elliott
In Memory of Donald L. Gumprecht
Mrs. Gudrun Weis Arnold Ms. Usha R. Tandon
Mr. & Mrs. James E. Engelbrecht Ms. Jane L. Johnston Mrs. Patricia Perry Mr. & Mrs. Jennifer M. Rutecki Mr. & Mrs. L. K. Sailer Ms. Lisa Slager Mr. & Mrs. Dain F. Sutton
In Memory of Dr. Norman Berger
In Memory of Dr. Francis M. Felice
In Memory of Howard Arnold
Ms. Joan Berger
Mrs. Helen Felice
In Memory of Ruthe Buzby
Mr. John S. Buzby, Sr.
In Memory of Rani Chatterjee
Mrs. Susan Middleton Ms. Laura Nebel Mr. Sandip Saha Ms. Lois Santer Mr. & Mrs. Mihir Sinha Mr. & Mrs. Edward Weiman
In Memory of John Cornell
Diane J. Cornell, Esq.
In Memory of Josselyn Craig Marsh Ms. Barbara Quinn
In Memory of Eloise Cummins Ms. Linda Pontell
In Memory of Eileen Curnane
Mr. and Mrs. John P. Neary
In Memory of James Davis
Ms. Bernadette R. Sorochen
In Memory of Virginia Daye
Ms. Nanette S. Cunningham Mr. Walter S. Daye INSIGHT
In Memory of Judith Gross
In Memory of Salvatore Fiorilli Ms. Sally Ann Krakora
In Memory of Claire Fitzgerald
Ms. Barbara Rosenstock
In Memory of Albert Fonda
Dr. & Mrs. James E. Wheeler Ms. Ellen Krupp Ms. Kathleen M. Langley Mr. William Prentice Ms. Angela C. Silva
In Memory of Barbara Fordyce
Ms. Jamie L. Indiveri Ms. Elizabeth M. Louie Mr. and Mrs. James Lynn and Family Mr. and Mrs. Steven L. Pettine Ms. Janet Pincus Ms. Lynn E. Quinn Mr. and Mrs. David Ramsey Ms. Karen M. Trahey Mr. and Mrs. Keith S. Weisgerber
In Memory of Dorothy Ganie
Mr. James H. Edwards
In Memory of Kenneth K. Glen, Sr. Ms. Jane L. Johnston
the penn memory center annual magazine
Mr. William Gumprecht
In Memory of Donald K. Hanson
Mr. & Mrs. Donald K. Hanson
In Memory of Katharine Harkins Ms. Heather H. Moyer
In Memory of Elizabeth Naismith Harlacher Anthony C. Harlacher, DMD
In Memory of Dr. Arthur Heller Seth M. Dubry, MD
In Memory of John Hippensteal
Mrs. Dorothy E. Loturco Mr. & Mrs. Robert A. Bender Ms. Elizabeth P. Casilio Mr. Robert J. Hippensteal Mr. & Mrs. John M. Medei
In Memory of Donna Kalkbrenner Ms. Mary Kate Tuohy
In Memory of Carole Kates
Mr. & Mrs. Leonard B. Shore
In Memory of Doris S. Keating Mr. John J. Keating
In Memory of Akram Ali Khan Mr. Zeeshan R. Khan
In Memory of Elliott Leavitt
Mr. Richard S. Pzena & Ms. Robin Buchalter 2018 / 2019
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In Memory of Betty Joyce Liss
Mrs. Dolores A. Lubin
Dr. James Pfrommer Mr. & Mrs. Frank L. Setzman Ms. Rhona Shane Mr. Steven Sidewater & Ms. Judy Munroe Mr. Andrew Unger Mrs. Barbara J. Wolf
Mr. Walter Crum Mr. Kevin P. Reilly Mrs. Moreley Lyddane
Mr. & Mrs. Eugene Lera
Ms. Kim Hasili Mr. & Mrs. Joseph M. Hupka Ms. Cara Joftis Mr. & Mrs. Edward M. Manion Ms. Paula J. Ney Ms. Nancy J. Pettineo Ms. Jennifer O’Brien Ms. Christina O’Rourke Ms. Josephine Ohioma Ms. Yemisi Oluwatosin Mr. & Mrs. William F. Rhoads Ms. Patricia Ryan Mr. and Mrs. Gerald A. Tone Ms. Barbara Walsh Mrs. Kyran Wilson
In Memory of Thomas O. Malcolm
In Memory of Jane Murray
In Memory of Mary E. McMackin
In Memory of Linda Ravitz
Ms. Prudence Dalrymple
Ms. Maura J. Kenney
Ms. Janet Albert Mr. S. Peter Albert & Ms. Janice Albert Ms. Silvie Altshuler Mrs. Ann Altus Mrs. Arthur Axelrod Mr. & Mrs. Herman Axelrod Mr. Elliot Braunstein Ms. Diane DeBell Mr. David Eskra Mr. Steven Frankel Mr. Ali Garber Ms. Mary T. S. Gibson Ms. Barbara Goodfriend Mr. Russell Karten Ms. Sherrie R. Kendall Ms. Jane L. Johnston
In Memory of Thomas Steiner
In Memory of Dr. Donald L. Nathanson
In Memory of Angelo Joseph Recine
In Memory of Cary Tye
Dr. & Mrs. Jerry Drew
In Memory of Joseph Lubin
Mr. Stuart A. Malcolm
Ms. Kelly L. Mellion
In Memory of Joseph Macri
In Memory of Gloria Parenti
Mr. Robert F. McMackin
In Memory of David Moore, Sr. Mrs. Colleen Barth Mrs. Lisa H. Dziepak Ms. Terri J. Peters
In Memory of Helen Foster Morgan Ms. Natalie M. Macy
In Memory of Ethel Mulvihill
Mr. & Mrs. Robert Benjamin Mr. & Mrs. Norman Block Mr. Elliot Curson Mr. Steven Etkins Mr. & Mrs. Adam Dale Friend Mrs. Elyce Klein Richard Philip Kluft, MD Mr. & Mrs. Paul Lichtman Dr. Marilyn Luber Ms. Elizabeth Maslow Mr. & Mrs. William B. McLaughlin III Karen K. Miura, MD Dr. Allen Myers & Dr. Ellen Myers Ms. Gail Ehrlich Peters INSIGHT
In Memory of Andrew Steward Ms. Diane K. Erwin
In Memory of Jean Sullivan
Mr. Edward B. Ryder IV
In Memory of Gerard Thomas Peter Thomas, DO
In Memory of Edith Tucker
Ms. Bobbi T. Reeves
Ms. Diane K. Erwin
Mr. & Mrs. Bruce A. Goodman
In Memory of Joanne Ruser
In Memory of George M. Ulmer, Jr.
In Memory of Eleanor D. Ryan
In Memory of Marting Van Arsdale
Ms. Margaret Russell
Dr. & Mrs. Denis M. Bane Ms. Eileen Campbell Mr. Steven M. Eisenstein & Lisa M. Longo, Esq. Mrs. Catherine Frank Dr. Janice Gaska & Mr. Peter Harvison
the penn memory center annual magazine
Ms. Elizabeth P. Ulmer
Ms. Diane K. Erwin
In Memory of Kenneth Williams
Mr. & Mrs. Bruce G. Fine
2018 / 2019
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PENN MEMORY CENTER C/O TERRENCE CASEY 3615 CHESTNUT STREET, ROOM 242 PHILADELPHIA, PA 19104
NON-PROFIT ORG U.S. POSTAGE PAID PERMIT NO. 2563 PHILA, PA. 19104
Empowering Caregivers a series presented by:
Spring Series 5:30 p.m. to 7:30 p.m. on one Thursday per month at 241 Ralston House, 3615 Chestnut Street, Philadelphia Every day at the Penn Memory Center, we hear our patients’ caregivers describe the emotional, physical, and legal challenges they face tending to their loved ones. We’re here to help. In 2019, we are offering a speaker series. Caregivers will have access to area experts who will present on a variety of intensive topics from in-home activities to end of life care. Each talk is free and capped at 30 guests. Priority will be given to those caring for patients of the Penn Memory Center. RSVP is required.
To RSVP, contact Felicia Greenfield, MSW, LCSW at felicia.greenfield@uphs.upenn.edu or 216-662-4523 and note which workshop(s) you’d like to attend.
February 7 Meaningful Activities to Engage Your Loved One Rachel Wiley, OT Day by Day Home Therapy March 14 Bathing, Grooming, Dressing, and Other Activities of Daily Living Rachel Wiley, OT Day by Day Home Therapy April 18 When, Why, and How to Move to a Memory Care Facility Sharon Buckmaster, PhD Future Works Consulting, LLC May 16 Elder Care Issues and the Law Jerry Rothkoff, Esq. Rothkoff Elder Care June 20 Hospice and Palliative Care Penn Care at Home