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
J
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.”
04
His wife, Dorothea, felt the same skepticism, recalling a
number of hospital visits.
05
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.”
10
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.
11
Robin Williams and the Stigma of Loss
12
See what’s brewing at the Memory Café
Cognitive Comedy trial a hit,
eight sessions scheduled for Spring
And much more …
continued on page 2
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
continued from page 1
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.”
newsletter of the penn memory center winter 2016
page 2
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.”
newsletter of the penn memory center
winter 2016
page 3
Cognitive Comedy
Using improv activities to improve memory, build confidence
by Terrence Casey
L
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 [email protected].
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
[email protected].
winter 2016
page 4
Living With Dementia
Guidance in a Global Classroom
by Deborah Fries
A
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.
newsletter of the penn memory center
winter 2016
page 5
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?
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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.
I
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.
[email protected] 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
A
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 [email protected]
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
winter 2016
page 8
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.
w
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.
newsletter of the penn memory center
winter 2016
page 9
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
winter 2016
page 10
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.
O
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
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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
[email protected]
EDITOR
Terrence Casey
[email protected]
215-898-9979
OFFICE
3615 Chestnut Street
Philadelphia, PA 19104
www.pennadc.org
www.makingsenseofalzheimers.org
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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
[email protected].