InSight Winter 2016 by Penn Memory Center

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

Winter 2016

A New Perspective Discovering value in research participation by Terrence Casey

oseph Jenkins was skeptical when he heard the Penn Memory Center was conducting research in his neighborhood.

A retired SEPTA employee living in West Philadelphia, he had spent his fair share of time participating in other organizations’ surveys and questionnaires about his community without ever seeing a result. There was the bus station shelter he wanted to see installed on a nearby street corner. No action.

Terrence Casey / Penn Memory Center Joseph and Dorothea Jenkins (right) listen as Penn Memory Center intern Tobi Akindoju presents the results of his research at the University of Pennsylvania last summer.

Then there was that neighborhood meeting, where city officials made promise after promise about other improvements to the city. No action.

Inside this issue …

“They never do anything,” he said. “Every time we have a meeting like this, nothing ever happens.”

His wife, Dorothea, felt the same skepticism, recalling a number of hospital visits.

Learning to live with dementia

“Everyone’s coming this way and that way, asking questions and not giving answers,” she said. “It gets so frustrating.”

Picture This: 2015 Thank You Breakfast

But this time, the participation call came from Elsie Shelton (featured in the Spring 2014 edition of Insight), leader of the First Corinthian Baptist Church Community Center. And as Dorothea Jenkins said, they would do “anything for First Corinthian,” including participate in yet another focus group.

Robin Williams and the Stigma of Loss

See what’s brewing at the Memory Café

Cognitive Comedy trial a hit, eight sessions scheduled for Spring

And much more …

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PENN MEMORY CENTER PERELMAN CENTER FOR ADVANCED MEDICINE

215-662-7810

www.pennadc.org

A NATIONAL INSTITUTE ON AGING-DESIGNATED ALZHEIMER’S DISEASE C E N T E R

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Creating An Age-Friendly Community

’This is gonna do something.’

The focus group was led by Tobi Akindoju, a rising senior majoring in economics at Yale University who was spending his summer interning with the Penn Memory Center. He worked closely with Tigist Hailu, coordinator for diversity in research and education. (Learn more about Akindoju in “Solving the Equation” on page 3.)

At the end of the summer, Akindoju presented his findings to an audience of his peers on the Penn campus. In attendance were four members of the First Corinthian focus group, including Joseph and Dorothea Jenkins, who listened closely as Akindoju outlined the problems they had discussed and proposed a plan of action to tackle each one.

Their goal was to determine whether the area surrounding First Corinthian was an age-friendly community and, if not, what steps would need to be taken to make it one. An elderly person’s cognitive health substantially depends on his or her environment, so improvements would help not only the community as a whole, but also the cognitive health of its members.

During his presentation, Akindoju made recommendations to the City of Philadelphia regarding the First Corinthian community, including: • Increasing park use by older adults by decreasing crime, and reducing clutter • Increasing number of fresh food options and providing seniors with transportation (either public or through ridesharing technology like Uber and Lyft)

Eleven First Corinthian members joined the focus group, detailing to Akindoju and Hailu the hurdles they noticed in their daily lives, especially regarding crime and the lack of agefriendly transportation options. “Older citizens in the neighborhood want to see change in their living environments,” Akindoju said. “All that is needed is an investment on the part of the city to make this area more age-friendly.”

• Increasing the number of bus stops and shaded bench areas “When this happened,” Joseph Jenkins said, “I said, ‘wow, this is gonna do something.’” Akindoju has completed his internship, but the Penn Memory Center is continuing to work to turn his research and recommendations into measurable results for the First Corinthian community.

Hoag Levins / Leonard Davis Institute From left: Tigist Hailu, coordinator for diversity in research and education at the Penn Memory Center, Joseph Jenkins, Dorothea Jenkins, Bern Frierson, Tobi Akindoju, Emma Brookins, Elsie Shelton, and Dr. Jason Karlawish, co-director of the Penn Memory Center.

He found that few options for healthy eating, medical care, and exercise could be found within a walking distance of the church, and uneven sidewalks posed a risk for seniors who dared to travel on foot. Transportation was often not available to these seniors either, making it “arguably the most significant problem,” he said. Focus group participants were concerned with their safety in the region, especially in public parks like Malcolm X, located across the street from First Corinthian. “The park is not appealing to me,” one participant is quoted as saying. “There are some services, but for me to go over there and sit, no way, I would have to have a rifle with me.” INSIGHT

Plenty of work is still ahead before the neighborhood can be called an “age-friendly community,” but Joseph Jenkins pointed out that the Penn Memory Center’s efforts and continued communication make the difference. “Maybe you don’t get something done, but if you keep coming back and telling us this, and come back here and see this, I’m fine with that,” he said. But, his wife notes, “we want to get something done, at least.”

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Solving the Equation by Terrence Casey

Tobi Akindoju, son of a Nigerian preacher, discovered a love for science as a student in an Atlanta magnet school. After an early acceptance at Yale University, Akindoju decided his future would be in medicine. He chose to major in biomedical engineering, which he calls “very hard-core science.” That plan changed just three semesters later. While classmates were spending their second college spring break sunbathing on tropical beaches or sleeping until the afternoon, Akindoju was at work on a community building project in Jamaica, on a trip sponsored by the United Way. His classmates returned to Yale with the sounds of ocean waves breaking in their minds; Akindoju returned with a new perspective on his future.

Terrence Casey / Penn Memory Center Penn Memory Center intern Tobi Akindoju stands before First Corinthian Baptist Church, the focal point of his research.

“I realized that there are a lot of social aspects to health, and a lot of them have to do with people’s socio-economic status, whether or not they’re in poverty,” he said.

covered that “there were some amenities that were lacking that would make a community age-friendly.” Namely, he documented issues with safety and transportation in the area. “I think one of the cooler things about the project was that it was in its very early stages. So they kind of gave me a lot of free range as to what direction I thought would be most effective,” he said.

“I realized that the science part of health is important, but it’s actually not as big of a determinant of how healthy people are as where they live, their access to food, what their “There are a lot of social aspects to health, income is, things of that nature.” and a lot of them have to do with people’s socio-economic status.” By the end of his sophomore year, Akindoju had switched his major to economics while staying the course on his premedical track.

— Penn Memory Center intern Tobi Akindoju

“I came back, and I wanted to find out more about that side of the equation,” he said. The search for that equation’s solution brought him to apply to SUMR— the Summer Undergraduate Minority Research Program — at the University of Pennsylvania. It was here that he was introduced to Dr. Jason Karlawish, co-director of the Penn Memory Center (PMC), and Tigist Hailu, PMC coordinator for diversity in research and education. Their project on a community health map of West Philadelphia piqued Akindoju’s interest. With guidance from his new mentors, Akindoju mapped a section of West Philadelphia not far from Penn and disINSIGHT

One of those directions involved coordinating a focus group at First Corinthian Baptist Church, in the heart of the mapped area.

“Interaction with community members like Elsie Shelton from First Corinthian Baptist Church helped Tobi learn how important community engagement is in public health,” Hailu said. His summer experience — “a perfect match” — has given Akindoju a leg up over his peers since returning to Yale. A year from now, Akindoju will have his economics degree from Yale and his first semester of medical school behind him, but he’s already looking years ahead to working in an urban environment and continuing his research. He credits Karlawish with setting an example he hopes to follow. “It’s really cool to see how he combines his clinical duties with research that’s helping people on a bigger scale,” he said. “I hope my career would end up looking like his.”

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Cognitive Comedy

Using improv activities to improve memory, build confidence by Terrence Casey

es Wolff stood at the edge of the circle, introduced himself, and threw a punch into the air before him. For the next few minutes, anytime his name was mentioned, a punch was thrown. It was all part of an improv exercise at the inaugural Cognitive Comedy workshop, presented by the Penn Memory Center. In this particular activity, participants were challenging their memory by recalling both the names and unique actions from around the circle.

Spring Sessions: All sessions held 10 a.m. to noon January 16 February 20 February 27 March 19 March 26 April 16 April 23

“For people who are getting older, it’s very important not only to exercise your mind, but to be aware that you’re capable of new things by not just what you’re doing but by watching what others do,” Wolff said. In another exercise, Wolff and others improvised their way through a series of situational prompts. “You had to think on your feet, and in a way that struck a funny bone,” said Wolff, who added the team effort boosted his confidence. Cognitive Comedy is the brainchild of local comedian and volunteer Leah Lawler, who held two trial sessions in 2015. “I had an inkling that long-form improv keeps you sharper and improves not only cognition and memory, but confidence, trust, and agreement,” Lawler said. “In the trial classes, everyone described a feeling of connectedness, or a ‘new family’ from the group. It takes you out of your own head and creates group mind.” Based on participants’ feedback, Lawler and the PMC have decided to expand Cognitive Comedy to a free, seven-session workshop in 2016. All sessions will be held at Ralston House, 3615 Chestnut Street. The workshop will conclude with an improv performance in May at the Memory Café (more information available on the back cover). Register for the free, seven-session workshop today by contacting Tigist Hailu at 215-573-6095 or tigist.hailu@uphs.upenn.edu. INSIGHT

newsletter of the penn memory center

Credit: Julie Kertesz/Flickr

Do you have a passion, talent, or skill that you would like to share with others? Research tells us that cognitive stimulation and social engagement are key components to successful aging. The Penn Memory Center is pleased to provide a platform for our patients and community to come together and learn from one another. If you would like to volunteer to lead a book club or a discussion group, teach knitting, lead a yoga class, or share another skill with others at the Penn Memory Center, we are happy to host, promote and provide some administrative assistance to transform your interest into action. Interested volunteers should contact Felicia Greenfield at 215-614-1828 or felicia.greenfield@uphs.upenn.edu. winter 2016

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Living With Dementia Guidance in a Global Classroom by Deborah Fries

cross the nation, most dementia patients are receiving daily care not in nursing homes or hospitals, but in home settings with unpaid and untrained family members. And though caregivers often seek additional information from professionals, their responsibilities can keep them from leaving the home for classes. That is why Drs. Laura Gitlin and Nancy Hodgson created “Living with Dementia: Impact on Individuals, Caregivers, Communities and Societies.” The course is a free MOOC (massive open online course) offered through Coursera. In the course of five weeks, a mixed community of healthcare professionals and at-home caretakers develop a foundational knowledge of the impact dementia is having on individuals, caregivers, communities, and societies worldwide. At the Johns Hopkins School of Nursing, Gitlin and Hodgson found success with the program, providing more than 50,000 participants in 169 countries with a framework of the pathophysiology of Alzheimer’s and related dementias. The course maintains a primary focus on needs, such as the need to maintain one’s personhood while losing cognitive function; the needs of the caretaker to have an arsenal of strategies for caregiving and coping; and the needs of community to successfully accommodate and include its vulnerable elderly. Gitlin, who directs Johns Hopkins’ School of Nursing Center for Innovative Care in Aging, said the emphasis on caregiving has made the online course resonate with a broad audience. Module 3 is devoted to specific, non-pharmacological strategies that can be used to reduce stress from long-term care in the home. Progressive simplification — such as reducing the contents of a medicine cabinet to only essentials and streamlining daily grooming routines — is one of several practical approaches presented in a series of video lectures. From changes to the environment, such as decluttering and adding high-contrast visual cues, to simplifying daily activities, the advice in these videos are most likely to be adopted and implemented by women, most often the primary caregiver in home-based, long-term care. Not surprisingly, women have comprised more than 65 percent of the Hopkins’ MOOC participants. The guidance given in the giant global classroom of the MOOC can be adopted by a caretaker in Paducah or Pretoria, INSIGHT

which makes it especially useful in a world where dementia is a growing burden, with changing prevalence rates that have soared in low and middle-income countries. Hardest hit by imploding rates are Latin America, the Caribbean, Western Europe and East Asia. Only 10 countries, including the United States, have developed national plans to deal with its impacts. Whether taken for educational credit, professional development or personal support, such courses build upon existing knowledge and aim to create momentum for creative solutions. They inform policy-making and help to create what Gitlin calls “an elder workforce” — those folks who will design dementia-friendly communities, and, ultimately, redefine living with dementia.

Living with Dementia:

Impact on Individuals, Caregivers, Communities and Societies For health professionals, students, family caregivers, friends of and affected individuals, and others looking to learn about dementia and quality care www.coursera.org/course/dementiacare 5 weeks of study / 3-5 hours per week

Gitlin said the course content — left online in February for participants to revisit — will remain current for two to three years. Plans are underway to produce several new videos for occupational therapists who work with dementia patients and to make the existing Living with Dementia content, as well as subsequent versions, available on demand. When the second offering of the Hopkins MOOC ended in February 2015, small groups from around the world vowed to continue their work together. Participants had forged new relationships and acquired new tools. They’d downloaded the 23 course videos in excess of 300,000 times. They’d created 1,200 action plans to address a need they’d identified in their own community — most in response to the needs for building awareness and providing support for caregivers. Archived course discussion groups from months ago are part of the group’s continued commitment to working together. They address questions like what to do for a polylingual patient, what to do for a mother who is having difficulty swallowing, how to participate in the forums as a person living with the disease, and what to do in the middle of nowhere with no resources.

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News

& Events

News & Events Non-memory symptoms more likely Dr. Hamilton wins teaching award in younger Alzheimer’s patients Dr. Roy Hamilton, a clinician with the Penn Memory Center, has A study in the April 2015 issue of Alzheimer’s & Dementia led by researchers from University City College London and the U.S. — including Dr. David Wolk, co-director of the Penn Memory Center — found that one in four persons under 60 did not report memory loss as a first sign of Alzheimer’s disease. The researchers analyzed data from the NIH-supported NACC study — a national database of participants attending across the United States — to show these notable differences between how Alzheimer’s presents in older adults compared to younger adults. In explaining the importance of the study, Wolk said “these findings that symptoms other than memory loss may be how the disease presents in Wolk younger adult are not only vital for helping to diagnose Alzheimer’s, they also suggest differences in how Alzheimer’s develops and progresses, differences that could have an impact on developing treatments.”

Stigma more closely connected to symptoms than diagnosis A patient’s medical future is a greater cause of stigma than an actual diagnosis of Alzheimer’s disease, according to a study. The negative beliefs associated with Alzheimer’s — that patients will become unruly in social situations or abandon personal hygiene, for example — are related to the prognosis rather than the diagnosis, researchers said. “Alzheimer’s disease label was generally not associated with more stigmatizing reactions,” the study’s authors wrote. “In contrast, expecting the symptoms to get worse…resulted in higher levels of perceived structural discrimination, higher pity, and greater social distance.” The stigma-focused study, conducted in part by Karlawish Penn Memory Center research coordinator Kristin Harkins and Co-Director Dr. Jason Karlawish, is one of the first of its kind. Authors hoped to show the range of Alzheimer’s impact on patients, Harkins said. The next step would be looking specifically at what this study called preclinical Alzheimer’s, observable by medical professionals but not the general public. Patients with preclinical Alzheimer’s “are seemingly well, many of them employed and otherwise engaged in social, cultural and political spaces,” the study’s authors wrote. However, “the more that the preclinical AD label is associated with future, severe deterioration, the more patients with this label may experience certain stigma outcomes.”

been selected as the recipient of the Leonard Berwick Memorial Teaching Award. The award, given to “a member of the medical faculty who in his or her teaching effectively fuses basic science and clinical medicine,” is typically given to a junior faculty member at the University of Pennsylvania.

Hamilton is an assistant professor of neurology, co-director of the Laboratory for Cognition and Neural Stimulation and is the associate director of Penn’s Clinical Neurosciences Training Program. Hamilton said that he fits the “general mold” of the award, but believes he was selected for his focus on mentorship and outreach to minorities. Hamilton

For 10 years, Hamilton served as curriculum director of Penn’s Neuroscience Pipeline Program, which focuses on mentorship and outreach for underserved high school students in West Philadelphia. He also helped to found and develop a curriculum for the university’s Summer Mentorship Program in Medicine for talented but disadvantaged high school students. He also serves as Assistant Dean for Diversity and Inclusion for the Perelman School of Medicine. The Penn Memory Center, where Hamilton sees patients, also has a focus in reaching out to minority communities, specifically older African-Americans, with the goal of educating and raising awareness about brain health and importance of participating in Alzheimer’s disease research.

AARP launches international group promoting ‘brain-healthy lifestyle’ A new independent organization — the Global Council on Brain Health (GCBH) — will bring together scientists, doctors, scholars, and policy experts from around the world to promote a “brain-healthy lifestyle.” The GCBH is an independent collaborative convened by AARP working together with Age UK — the United Kingdom’s largest charity dedicated to helping everyone make the most of later life. Karlawish has joined GCBH’s Governance Committee, which will serve as the hub of the organization’s hub-and-spoke structure. The spokes will be comprised of specialists focusing on single issues such as exercise, sleep, diet, stress, and medications. “People are eager for credible, unbiased and evidence-based information to guide how they should spend their time and effort and money to maintain their brain health,” he said. “The partnership with Age UK and membership from across the globe are especially exciting. An international problem needs an international partnership.”

Did you know?

Know what?

ore m find an the c You s and ts … n new st eve e lat

Caregiver Class, Cognitive Fitness preparing for spring sessions

… on the web at www.pennadc.org

The One I Know

A Making Sense of Alzheimer’s Project by Terrence Casey

The Penn Memory Center offers a six-week psycho-educational Caregiver Class every spring and fall for those caring for a family member or other loved one with dementia. Caregivers of people with Alzheimer’s disease or other dementias may experience feelings of sadness, anger, confusion, hopelessness, or frustration. This course is designed help caregivers develop skills to better help their loved one — and themselves — cope with the many changes of living with dementia. Greenfield

Research supports that certain memory and thinking deficits can be compensated for by engaging in specialized cognitive training. Practicing these techniques can help optimize independence, improve overall health, and maintain normal daily activity. The Cognitive Fitness program combines facilitator-led computer-based brain stimulation exercises, compensatory strategies, education, and supportive coaching. Contact Felicia Greenfield at 215-614-1828 or felicia.greenfield@ uphs.upenn.edu for more information. Enrollment for Cognitive Fitness and Caregiver Class will begin soon.

Panel of university experts reimagines end-of-life care When facing their own mortality, people tend to reevaluate their top priority in life. Is it enough simply to exist? Or is a life without happiness or comfort worth the pain and suffering that comes with terminal illness? This was one issue tackled by a recent panel of University of Pennsylvania medical experts during “Reimagining the End of Life.” “The end of life leads to lots of existential questions,” said Dr. Ezekiel Emanuel, Vice Provost for Global Initiatives and Chair of the Department of Medical Ethics and Health Policy at Penn. For example: “Have I lived a meaningful life?” But for many patients, end-of-life priorities are not complex, Karlawish said. “You see consistently across studies…a focus on present pleasures,” he said. For some, that may be healthy hobbies like crossword puzzles; for others, it could be unhealthy habits from the past like smoking. In his experience, Karlawish saw that many patients sought to organize their affairs well before the end was in sight. “Seventy-five percent wanted help planning for the future,” said Karlawish, who has argued that this planning goes beyond physical health and includes financial planning he calls “whealthcare.”

Terrence Casey/Penn Memory Center Terrence Casey (right) is joined by relatives, including “Jo,” circa 1994.

n many ways, I consider myself lucky to have been young when my grandmother was diagnosed with Alzheimer’s disease. Spared the heavy burden of understanding her prognosis, I was able to create memories as any child would of the woman we called “Jo,” a Scottish term of endearment. Jo died in 2006, and her final years were tremendously difficult on the family. But the struggles of those years live in the shadow of our lasting memories of our beautiful grandmother, mother and wife. It was this gift that was the inspiration behind a new Making Sense of Alzheimer’s project we’re calling “The One I Know.” The first submission — “Remembering Chopin” — is my own. You can find it on our website, www.makingsenseofalzheimers.org. Even late in life, Jo recognized and responded to my playing Chopin on the piano (no matter how poorly I performed). To this day, I cannot sit on a piano bench without seeing her closed eyes and peaceful smile in the corner of the room. We’re inviting you to share your favorite memories of an older adult with memory problems (not necessarily Alzheimer’s disease). We encourage participants to share photos, videos, or audio recordings to help tell the story. If you’re interested in participating, contact me at terrence. casey@uphs.upenn.edu or by calling 215-898-9979. New submissions will be added to the site monthly.

Progress against Alzheimer’s disease depends on your support for our research, programs and patient care.

With gratitude, we recognize these recent donors

In memory of Salvatore Paul Simonetta Sr. Ms. Erica Robertson

Gifts received up to Dec. 1, 2015

Mrs. Laura Ashton Mr. Carl C. Duzen Mr. and Mrs. E. Ralph Hostetter Ms. Susan Jewett Mr. John J. Keating Mr. and Mrs. Howard Kellogg Mr. and Mrs. Michael W. Munley Ms. Frances Park-Li Rothman

Gifts of $15,000

Mr. William B. Eisen and Ms. Yvonne Bach

Gifts of $1,000

Mr. Steve Downing In memory of Ruth Folio Ms. Joyce Leftly In memory of Josselyn Craig Marsh Mr. and Mrs. Llewellyn G. Pritchard Ms. Mary E. Pierce

Gifts of $500

Connelly Foundation Mr. and Mrs. E. Ralph Hostetter Mr. Brian Bergin Rigney

lzheimer’s disease threatens to become the largest and most costly public health crisis ever faced by our nation. Yet federal and other funding for our efforts continues to lag. 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.pennadc.org. To view the list, click on “Gifts” and then “Our Proud Donors.” 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, Jason Karlawish and David Wolk

INSIGHT

Gifts of $250-$499

Mr. Daniel Criel Mr. Gregg A. Geffen Mrs. Nancy S. Lonsdale Mrs. Beatrice C. Showers In honor of John and Ruthe Buzby Mr. John S. Buzby, Jr. In memory of Eileen Curnane Mr. and Mrs. John P. Neary In memory of Antonia Hamilton Ms. Anna L. Stepanova The Murthy Foundation In memory of Josselyn Craig Marsh Ms. Barbara Quinn

newsletter of the penn memory center

Gifts of $100-$249

In memory of Howard Arnold Mrs. Gudrun Weis Arnold In honor of Steven E. Arnold, MD Mr. and Mrs. R. Neal Ensley In memory of Jacqueline Bilker Steven D. Ivins, Esq. In honor of Lori Bilker and Greg Kong Mr. Steven Lotwin In honor of John M. Bruza, MD, and Jason Karlawish, MD Mr. Graeme Clapp and Ms. Anne Wright In honor of Amy Charles Ms. Nadine Flexer In honor of Diane Cornell and Margaret Flinner Ms. Suzanne D. Cornell In honor of William Ebert Mrs. Nancy B. Sutter In memory of Carmencita Kasulis Mr. and Mrs. Louis J. Vetere

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In memory of Josselyn Craig Marsh Ms. Constance P. Buckley Mr. and Mrs. Robert L. Readinger, Jr. Ms. Jeanie L. Sundquist In memory of Stephen Michella Ms. Nadine Flexer In honor of Tisha Pisasale Ms. Diane Mecoli In memory of Donald V. Rhoads, MD Mr. Samuel Cohen and Ms. Amy Cohen Mr. and Mrs. John R. Hass Mr. and Mrs. Thomas Lloyd Dr. and Mrs. William Mebane III Mr. and Mrs. Francis Strawbridge III In honor of Dr. Gerard D. Schellenberg and Dr. Mary T. Ersek Miss Mary Susan McGorray In honor of Marianne Watson Ms. Mary C. LeFever In memory of Joyce Zeller Ms. Evelyn Franzen Mr. and Mrs. William Hartnett Ms. Denise S. Rennis

Gifts up to $99

Mrs. Edith A. Ferris Ms. Vivian Golden Mr. and Mrs. Michael A. Iacocca Mr. and Mrs. Edward J. Jankowsky Mr. Zeeshan R. Kahn Ms. Marilyn Sutton Loos Mr. Victor Kodzo Ofori Mr. and Mrs. George L. Reed Mrs. Maria Touchton INSIGHT

Mr. and Mrs. Lloyd C. Whittaker Ms. Evelyn Yaari In honor of Charles Alexander, MD Mr. and Mrs. James C. Catrickes In memory of Donald Gentner Mr. Michael P. Felker and Mr. Stephen R. Sacks Ms. Patricia L. Hayes Ms. Nancy S. Morgan Mr. Gary O’Cock Mr. Arthur W. Schuller Mrs. Lucia Taylor In honor of Jason Karlawish, MD Mrs. Norma L. Terrell In memory of Akram Ali Khan Ms. Zeeshan R. Khan In memory of Robert Lewis Nadine Flexer

In memory of Anthony Rapp Ms. Erika L. Sharpe In Memory of Donald V. Rhoads, MD Mrs. Elizabeth M. Baer Mr. and Mrs. Robert A. Barr, Jr. Mr. and Mrs. John K. Berman Ms. Carol J. de Fries Ms. MaryLea Klauder Ms. Nicole I. Krippel Mr. and Mrs. Richard Taylor In memory of Salvatore Paul Simonetta Sr. Mr. and Mrs. William M. Hoare, Jr. Mr. and Mrs. Joseph H. Lang

Ms. Dolores Simonetta Mrs. Patricia L. Walsh Mrs. Joan G. Winokur In memory of Mimi Spolansky Mr. and Mrs. Jeff L. Redel In memory of Mary Starbard Judy A. Somers, MD In honor of Henry Sullivan Scott A. Dash, PhD In memory of Joyce Zeller Helen E. A. Bertas Mr. and Mrs. Harvey Maroney Ms. Anne B. Trivelis

Your gifts make our efforts possible.

hen contemplating your own memorial arrangements or those of a loved one, please consider an obituary request that, instead of flowers, directs donations for Alzheimer’s research at the Penn Memory Center to:

In honor of Patricia Ludwig Mrs. Elizabeth Hausner

“Trustees of the University of Pennsylvania” (write “ADC-PMC” on the memo line)

In honor of Gerry Markovitz Mr. and Mrs. Sidney Gable

and mailed to:

In memory of Josselyn Craig Marsh Ms. Gloria H. Benson Ms. Kathryn Cox Mr. and Mrs. Steven R. Freeman Mrs. Marion S. Haney Ms. Kathleen McDaid Mr. and Mrs. Joseph Pensabene Ms. Jeanne L. Reilly Mr. and Mrs. Stephen F. Shank In memory of Paul Myers Mr. Thomas Steiner and Ms. Prudence Dalrymple

Penn Memory Center (Attn: Terrence Casey) 3615 Chestnut Street Philadelphia, PA 19104

Make a gift online It’s easy, quick and secure. Visit our website at www.pennadc.org and click on “Gifts.” You’ll be directed to the online donation form.

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An Annual ‘Thank You’

PMC thanks research partners with breakfast by Terrence Casey

After another year of studying neurodegenerative diseases with the help of hundreds of volunteers, the Penn Memory Center (PMC) thanked about 200 of those research participants and their family members with an informational breakfast. The annual event, held at the Inn at Penn October 24, brought research participants face-to-face with the clinicians and coordinators working on PMC studies. “It was truly gratifying to see so many patients and their families at the breakfast, which demonstrates their commitment to develop better treatments and care for Alzheimer’s disease, as well as reaffirming that this goal requires a team effort,” said PMC Co-Director Dr. David Wolk.

Terrence Casey / Penn Memory Center Top: A Thank You Breakfast guest addresses the Penn Memory Center panel during the Q+A session. Middle left: The Penn Memory Center Choir opens the day’s events with a selection of American tunes by Aaron Copeland. Above: Penn Memory Center staff members sign in guests at the Inn at Penn. Left: Dr. John Trojanowski addresses his fellow panelists (from left) Felicia Greenfield, Dr. Dawn Mechanic-Hamilton and Dr. David Wolk during the Q+A portion of the breakfast.

INSIGHT

newsletter of the penn memory center

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Robin Williams’ Last Act and the Stigma of Loss by Jason Karlawish

Editor’s Note: This is an edited edition of a column originally published on www.forbes.com/sites/jasonkarlawish, where PMC Co-Director Dr. Jason Karlawish is a contributor.

ne year after the comedian Robin Williams’ suicide, his widow declared that her husband’s suicide was not, as had been suspected, a devastating symptom of a depression. He was, she insists, “killed” by Lewy Body Dementia. Her remark suggests it was the rational act of a person suffering from both progressive losses to his capacity and the concern of further losses.

Suffering so severe that a doctor should prescribe a medication to end the patient’s life has countless forms but one common denominator: the loss of dignity. Many laws that permit assisted suicide have “dignity” in their title, and a study of Washington state’s law found “loss of dignity” was among the most common reasons people sought death with dignity.

has a greater effect on stigma than the Alzheimer’s disease label has substantial implications for public policy and messaging. The U.S. has embarked on a national Alzheimer’s plan. Alzheimer’s is a “catch-all” term as the plan covers the other neurodegenerative diseases such as Lewy Body Disease. One of the goals is prevention, an approach that requires early diagnosis, and initiatives like detection of “any cognitive impairment” in the annual Medicare wellness visit will foster this goal. As we pursue prevention,

“Stigma is in our hands. Treatments to we’ll be labeling persons with alter the natural history of neurodegen- neurodegenerative diseases at a stage erative decline will help to reduce it.” when their disease is largely ahead of

Rational suicide is morally challenging, and it’s gaining acceptance. With the passage of California’s “End of Life Act,” fifteen percent of Americans now have the legal right to end their life rather than suffer the advanced stages of a disease. The core conditions to what proponents call “physicianassisted death” and opponents call “physician-assisted suicide” are that the person is judged terminal, capable of making the choice and able to execute the act. Williams likely was not terminal. His decision to end his life will stir debate over why doctor-assisted death is limited to persons who are terminal. Proponents of expanding it to nonterminal stages of a disease argue it should be available for persons whose disease could last for years before death, years during which the person will experience unwanted suffering while incapable of either making the choice or being able to end their life. They INSIGHT

point to the Netherlands’ euthanasia law that includes “unbearable and hopeless suffering” as justification.

There are many ways to arrive at the loss of dignity, but most travel on a common road, a road called stigma. Arguably, the greater the stigma – beliefs that create feelings of distance, shame and otherness — the greater is the threat to the dignity of persons with the disease. The more we understand the causes of stigma, the better we can preserve dignity. My colleagues and I have studied how the public experiences stigma towards persons with Alzheimer’s disease, the most common neurodegenerative disease. Their perceptions of stigma set the cultural tone. Our hypothesis was that the prospect of worsening decline more so than the cause of the decline (the label Alzheimer’s) would drive stigma reactions. That is, stigma in persons with Alzheimer’s disease is driven by the fact that it will get worse. And that’s what we discovered. The finding that perceived prognosis

newsletter of the penn memory center

them. The ways we talk about living with Alzheimer’s disease, about the future after an early diagnosis, will shape whether we feel stigma and therefore a threat to our dignity and so our desire to be dead.

Stigma is in our hands. Treatments to alter the natural history of neurodegenerative decline will help to reduce it. We need to clean up our language as well. “Zombie,” “living dead” and “death twice” may fire up the need to take national action against Alzheimer’s, but we pay the price of stigma. Such words should be as offensive as racial slurs. We should also deepen our conversation about how to live with the threat of cognitive decline. My colleagues and I launched www.makingsenseofalzheimers. org. Words and images will not cure neurodegenerative diseases, but they can help us make sense of this problem of the mind. What if Robin Williams’ last act was not his suicide, but, like his candid humor about his depression and substance abuse, a comic monologue about his losses?

winter 2016

page 11

PENN MEMORY CENTER

NON-PROFIT ORG

PERELMAN CENTER FOR ADVANCED MEDICINE

U.S. POSTAGE

3400 CIVIC CENTER BOULEVARD

PAID PERMIT NO. 2563

2ND FLOOR, SOUTH PAVILION

PHILA, PA. 19104

PHILADELPHIA, PA 19104

See What’s Brewing at the Memory Café On people and efforts that bring the knowledge we seek on Alzheimer’s disease and lifelong brain health ever closer in sight. PUBLISHER Jason Karlawish jason.karlawish@uphs.upenn.edu EDITOR Terrence Casey terrence.casey@uphs.upenn.edu 215-898-9979 OFFICE 3615 Chestnut Street Philadelphia, PA 19104 www.pennadc.org www.makingsenseofalzheimers.org Follow us on Facebook https://www.facebook.com/ PennMemoryCenter l The Penn Memory Center is a National Institute on Agingdesignated Alzheimer’s Disease Center (ADC), one of only 29 such centers in the United States, and the only one in our tri-state region. 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. PRINTING Fort Nassau Graphics http://fortnassaugraphics.net/

by Terrence Casey

The Penn Memory Center is pleased to invite our patients and friends to a new, free pop-up café. This program is exclusively for people with memory problems, including Alzheimer’s disease, and their partners/families. “The challenges of living with memory loss can sever social connection at a time when it is needed the most,” said Felicia Greenfield, LCSW. “Memory café gatherings are a way for people with memory loss and their companions to come together to make new friendships.” More than a dozen people gathered at Christ Church Neighborhood House Dec. 4 to kick off the inaugural Memory Café meeting. “We were thrilled with the turnout for our first café, and we hope to see it grow in popularity,” said PMC intern Genevieve Ilg, who organized the event. “We are thankful for the generous support from Christ Church and Gia Kitchen that made our café a reality.”

Terrence Casey / Penn Memory Center

Hours of Operation: 10:30 a.m. to noon Friday, February 5, 2016 Thursday, March 24, 2016 Friday, April 8, 2016 Christ Church Neighborhood House, 20 N. American Street, Philadelphia, Pa. For more information, contact Genevieve Ilg at 215-360-0257 or genevieve.ilg@uphs.upenn.edu.