a (16 pages)

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
SPRING 2013
Setting the standard of care
How a diagnostic follow-up visit
provides education, resources and support
by Chelsea Brandt
A
little over a year ago, Tony Iero learned that his partner, Paul Myers,
had Alzheimer’s disease. The news did not come as a complete
surprise, but it left him reeling.
“There was no warmth involved when the doctor delivered the diagnosis,”
Iero said. “Paul took the mini mental examination. He didn’t score well and
the neurologist just said, ‘He has Alzheimer’s disease.’ When she said that, it
hit me like a ton of bricks. I was by myself, I was alone.”
No support, suggestions or resources were offered.
After leaving the visit, Iero immediately called Myers’ sister, Elizabeth,
who was surprised that the doctor didn’t provide any suggestions on
support groups or other resources to help patients with Alzheimer’s or their
caregivers. After realizing the lack of information provided by his neurologist,
Iero researched other practices in Philadelphia. This search led to the Penn
Memory Center website.
In the fall of 2011, Paul Myers and Tony Iero had a new patient evaluation at
the Penn Memory Center. They haven’t looked back since.
“I was very emotional at that time, and the staff was very, very helpful
when I called. I felt the warmth—the caring—right away. Not only were we
scheduled to be evaluated by Dr. Wolk, but we were also assigned to a health
educator, Mirna Negròn, and I also had Felicia Greenfield by my side,” Iero
said.
At the Penn Memory Center, Paul Myers and Tony Iero experienced the
diagnostic follow-up visit, a novel intervention provided to all patients and
continued on page 2
The Penn Memory Center health
education team provides specialized,
one-on-one counseling and support
to PMC patients and their families,
including information about the
diagnosis and a discussion of classes,
programs and research opportunities.
Above, clockwise, left to right: Mirna
Negròn, Penn Memory Center
health educator, Ricardo Santos and
Sarah Windt, master’s level social
work interns from the University of
Pennsylvania School of Social Policy
and Practice and Felicia Greenfield,
LCSW, Associate Director for Clinical
and Research Operations.
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
families after an initial evaluation. At
this specialized visit, the patient and
their family meet not only with their
doctor, who delivers the diagnosis and
discusses prescription medications,
but they also meet with a trained
health educator who offers support,
education, guidance and referrals.
How the visit works
Felicia Greenfield, Associate Director
for Clinical and Research Operations
and licensed clinical social worker, has
played a major role in implementing
and shaping the diagnostic follow-up
visit.
“It’s a unique and relatively new
approach to patient care at the Penn
Memory Center that we put into
practice in 2010. We recognized that
education is part of how patients and
families live with a chronic disease.
It’s just as important—if not more
important—as a prescription,” said
Greenfield.
Greenfield notes that the visit is one
part of a comprehensive approach
to care that allows clinicians, health
educators and staff to better connect
with and support patients. “It does set
our center apart from usual practice,
but we think this is the future of care.”
At the diagnostic follow-up visit, the
patient and their family members
meet with their clinician to review the
results of the first visit, including their
cognitive testing and MRI or other
diagnostic imaging scans. After the
diagnosis and treatment options are
discussed the focus of the visit shifts,
and a health educator meets with the
INSIGHT
patient and family.
In addition
to supportive
counseling, each
family receives
educational materials
tailored to their
individual needs,
such as advice on
the prognosis and
staging of the disease
and management
of emotional
and behavioral
difficulties that may
Back to school for lifelong learning
arise. Patients also
receive counseling
To treat Alzheimer’s disease, the education offered
on financial, legal,
at the Penn Memory Center is just as important as
driving, residential
any pharmaceutical prescription.
and community
care service issues.
In addition to the resources provided,
Families are also introduced to
the diagnostic follow-up visit provides
the many research opportunities,
an outlet for patients and families
programs and services available to
to have any of their questions and
them at the Penn Memory Center.
concerns addressed. Penn Memory
Center clinicians and staff understand
Mirna Negròn is the center’s primary
that it is often difficult to hear a
health educator who has provided
diagnosis of Alzheimer’s disease or
social work and supportive services
mild cognitive impairment for the first
at the Penn Memory Center since
time, and health educators are there to
2000. She explains that a typical visit
help families process the information.
covers much more than the patient’s
The ultimate goal is for the health
diagnosis.
educator to become the patient’s direct
link to the Penn Memory Center and
“I talk about healthy diets and the
their clinician.
importance of exercising, and I
encourage patients to be socially,
mentally and physically active. These
are the things people can do to
slow down disease progression and
optimize healthy aging. I try to let our
patients and their care partners know
that they’re not alone and that there
are resources available to them,” said
Negròn.
newsletter of the penn memory center
Even after the visit ends, the center’s
health educators continue to work
with families as needed to provide
information and advice. For Negròn,
maintaining contact with her patients
for any future needs or concerns
that arise is an important part of the
diagnostic follow-up experience.
spring 2013
page 2
“If a patient or family member thinks
of something after they leave or if they
have any questions, they can call me. I
am available for them even if they just
need to talk,” said Negròn.
Helping patients at the diagnostic
follow-up visit
Robert Sweeney, husband of patient
Antoinette Sweeney, came to the
diagnostic follow-up visit with his
daughter Susan and his son Michael.
Though Mrs. Sweeney’s diagnosis
did not come as a surprise to her
family, her lack of insight into her
own problems presented a more
complicated case. Master of social
work intern Sarah Windt was available
to help support the family.
“Situations like these demonstrate the
importance of the diagnostic followup visit and of health educators who
can tailor each visit to the patient
and family’s unique needs,” Windt
observed.
and increased social activities as a way
to help Mrs. Sweeney to accept her
diagnosis.
“I think Sarah’s insight into my wife’s
problem and her suggestions about
what could be done to make those
things better were very, very helpful,”
said Robert Sweeney.
Continuing to develop the
standard of care
Greenfield is working with Negròn
and the School of Social Policy and
Practice interns to adapt the visit to
offer a truly individualized approach
for each patient.
“We’re developing specific
recommendations based on the
patient’s unique cognitive needs,
such as information on driving
evaluations for patients who have
spatial problems or specialized
information on language difficulties
for those having trouble with speech
“I try to let our patients and their care
partners know they’re not alone. There are
resources for them.”
approach to disease management
but also for the innovative care and
support we provide to caregivers and
families affected by this illness—
support that they have not found
elsewhere,” Greenfield said.
Dr. Steven Arnold, director of the
Penn Memory Center, notes that the
diagnostic follow-up visit remains a
special resource.
“Insurers and Medicare don’t
reimburse this. We’re able to offer it
courtesy of grants and philanthropy.
Our goal is to make it part of the
standard of care,” Dr. Arnold said.
“If you’re unfortunate enough to
have to go through dementia, the
Penn Memory Center is probably the
premiere place to go in the country,
and we’re lucky to have them in the
Philadelphia area. It’s been a very
pleasant and rewarding experience,”
said Iero. n
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Windt is part of the center’s
collaboration with the University of
Pennsylvania’s School of Social Policy
and Practice, a relationship that allows
master’s level social work interns to
work with Negròn in administering
the diagnostic follow-up visit.
Windt met with the Sweeneys and was
able to suggest support groups, classes
INSIGHT
“Families have told us that they
chose the Penn Memory Center not
only because of our state-of-theart diagnostics and comprehensive
newsletter of the penn memory center
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Do you have feedback on your
diagnostic follow-up visit at the Penn
Memory Center? Share your thoughts
by contacting Felicia Greenfield, LCSW,
at [email protected]
or (215) 614-1828.
spring 2013
page 3
Scientists, families and patients debate the
link between anesthesia and Alzheimer’s disease
by Lisa Bain
B
efore being diagnosed with Alzheimer’s disease
in her late 70s, Doris Reimann’s active lifestyle
included tennis, two different bridge clubs and water
aerobics. Even as the disease progressed and she moved to
an assisted living facility, she remained active and, in many
ways, self-sufficient. But according to her daughter-in-law,
Mary Beth, that all came to an end in 2011 when Doris fell
and broke her hip.
“She was in so much pain,” recalled Mary Beth. “The
doctors said that without surgery her pain would continue,
so two days later she had an operation to repair her hip. She
woke up groggy, and by the next day her face was drooping
and she could only mumble. We thought she had a stroke.
We kept telling everyone ‘this is not her norm.’ But they all
told us it was the anesthesia and that she would eventually
come out of it.”
A week later, Doris was transferred to a rehabilitation
facility and eventually to a nursing home where she now
lives. She never walked again except in physical therapy.
She doesn’t remember the people in her life or that she was
married for 50 years or that she has two sons. Mary Beth
says her dementia increased tenfold after the surgery.
While not all people experience such drastic cognitive
impairments following anesthesia and surgery, stories
like this are commonly heard by clinicians who care for
elderly patients, said Dr. Steven Arnold, director of the
Penn Memory Center. Even though it often turns out that
patients had memory issues before surgery, family members
naturally want a reason for their loved one’s rapid cognitive
decline and they may seize on surgery as the culprit. Dr.
Arnold gives their concerns credence.
“There is a lot of clinical experience to support this,” he
said. “Something indeed may be going on during surgery
for many people, but what exactly happens, how often does
it happen and does it actually start off or accelerate the
process of age-related neurodegeneration like Alzheimer’s
disease—those are still open questions in my mind.”
INSIGHT
Dr. Olga
Achildi, a fellow
in geriatric
psychiatry at
the University
of Pennsylvania,
has been
combing
through the
medical and
scientific
literature to
When he wakes up, will he be the same?
get a better
picture
of what is
known, and not known, about the effects of surgery and
anesthesia on cognition. Dr. Achildi said that although
there is a widespread perception that cognitive decline often
follows surgery, the scientific evidence for such an effect is
inconclusive. Moreover, many patients report no cognitive
changes following surgery. In people with pre-existing
Alzheimer’s disease, very little is known since such patients
are often excluded from studies.
But Dr. Roderic Eckenhoff, vice chair for research and
professor of anesthesiology at Penn, said that while
there are reasons to link both surgery and anesthesia to
worsening cognition, the surgery itself may play a bigger
role. Dr. Eckenhoff came to this conclusion after studying
the problem in laboratory animals, an environment where
he can separate out the effects of anesthesia and surgery.
Anesthesia had been previously shown to cause lesions
in the brains of mice that mimic those found in brains
of people with Alzheimer’s disease, but the effects on
cognition have been less clear. Anesthesia can also affect the
inflammatory response, exaggerating it in some cases and
dampening it in others. Meanwhile, surgery has been shown
to trigger a strong inflammatory response in the brain,
which can lead to the destruction of brain cells.
Dr. Eckenhoff ’s studies showed that anesthesia alone did
newsletter of the penn memory center
spring 2013
page 4
induce small declines in cognition, but “when we added surgery
to the mix, it became a much, much more prominent feature,” he
said. “And it also could be an interaction between anesthesia and
surgery.”
Dr. Eckenhoff hypothesizes that two “hits” are required to
trigger brain damage following surgery. “You have to come
into it with a pre-existing vulnerability,” he said. In the animal
models he studied, genetic factors represented the first hit that
made the animals vulnerable to the second hit, surgery. In
humans, it is not known why some patients are vulnerable and
others are not. Drs. Eckenhoff, Arnold and Achildi are planning
a study with other Penn researchers to try to find markers of
vulnerability in the blood, spinal fluid or on imaging tests that
will predict who is at risk of complications following surgery or
anesthesia.
What to do if your family
member needs surgery
Six questions to ask your surgeon and
anesthesiologist before surgery with anesthesia
takes place in someone with Alzheimer’s disease
or mild cognitive impairment
Two more unanswered questions are whether certain types
of anesthesia are less likely to cause problems or may even be
protective and whether there are other ways of lowering the
risk of a bad outcome. For example, some research suggests
that injectable forms of anesthesia may be safer than inhaled
anesthetics, possibly because these injectable anesthetics have
anti-inflammatory properties. Others have suggested that using
anti-inflammatory drugs in conjunction with anesthesia may be
protective. Dr. Eckenhoff cautioned that data supporting these
approaches is weak and more research is needed.
For now, both he and Dr. Arnold agree that patients and family
members should talk to their primary care physician, surgeon
and anesthesiologist about their concerns before surgery with
anesthesia takes place. Surgeons and anesthesiologists may not
be aware of the latest research linking anesthesia and surgery to
cognitive decline in people with Alzheimer’s disease. “The more
patients bring it up, the more they will be forced to think about
it and seek answers,” said Dr. Eckenhoff.
Dr. Arnold suggested asking whether the procedure can be
done under minimal or local anesthesia rather than general
anesthesia. “You need enough to get through the surgery, but the
depth of anesthesia and type of anesthesia may have an effect on
cognition, so we think less anesthesia may be better.”
And remember, he said, that the surgery is being done for a
reason: to improve the patient’s quality of life. “You may have to
put up with some side effects.” n
INSIGHT
newsletter of the penn memory center
If the patient has cognitive impairment or
Alzheimer’s disease, let the anesthesiologist
and surgeon know about the diagnosis.
Ask whether the presence of cognitive
impairment changes how they would treat
the condition.
Ask the surgeon whether there are
alternative procedures that would not
require anesthesia.
Ask the anesthesiologist whether there
are alternatives to general anesthesia that
might be safer, particularly for someone
with cognitive impairment.
If general anesthesia is necessary, ask if
there are strategies that would lessen the
risk of suffering the ill effects of surgery
and anesthesia.
Ask the anesthesiologist what is the usual
amount of time it takes to recover from
anesthesia, and prepare yourself that your
loved one may take a little longer than that.
If the surgery is necessary, ask the surgeon
what steps the surgical team uses to reduce
the risk of delirium after the operation.
Lisa Bain is a freelance science writer with over
25 years of experience covering biomedicine,
health and healthcare.
spring 2013
page 5
Announcing an Alzheimer’s diagnosis
One family’s journey from secrecy to openness
by Colette Cassidy
I
still wonder
what went
through my
mother’s mind
the day we first heard the word
Alzheimer’s. We had an appointment
with a neurologist, and we were
waiting to hear if her memory
problems and confusion were actually
being caused by something much more
serious.
“This could be Alzheimer’s,” he began.
Mom looked at me and then back at
him, clearly shocked and surprised.
Neither of us spoke. Seeing our faces
he seemed to backtrack, saying maybe
it was just anxiety. He told us she was
probably fine and that we should come
back in a few months.
It wasn’t until we were in the car that
she turned to talk for the first time.
“You are not to tell anyone about
this!” she instructed, using the stern,
adamant tone she had perfected as an
elementary school teacher. “Well I have
to tell Dad,” I said. She paused and
softened, looked out the passenger side
window, and then she looked back at
me, maybe wondering if there was any
way she could keep this from the man
she had loved since she was a teenager.
“Well I suppose we’ll tell Dad,” she said
quietly, “but no one else!” The teacher
was back.
So I kept my mother’s secret. Only
my father and I knew about the
neurologist’s wavering diagnosis,
and maybe because of that we slid
INSIGHT
in and out of denial ourselves. We
would repeat phrases like, “He said it
might be anxiety,” and we began anew
trying anything that could help her
memory and reduce stress. There were
added vitamins, more exercise, more
vacations, dinners and movies out. On
bike rides or walks when Mom pointed
out shortcuts I’d relay it to my father
and say, “Someone with Alzheimer’s
couldn’t remember shortcuts!” It shows
how little I knew.
Several years of this denial went by.
My mother had been compensating
for years, and my father and I had
unwittingly joined her. If he was at a
business meeting he made sure I could
arrange my schedule to stay home with
her. If we had an event I would get
ready early so I could dress her as well.
When she had trouble remembering
her name we spelled it out for her. We
looked the other way as she struggled
to write the names of her own
children. For a highly educated woman
with meticulous penmanship and
letter writing skills it was like ignoring
the fact that Dr. J had forgotten how to
play basketball.
My brother Neil was the only one who
finally said something. After a trip
with my parents he emailed me with
a question: “Do you think Mom has
Alzheimer’s?” I told him maybe, but
the doctor said it might be anxiety. I
could tell that while I may have been
fooling myself I wasn’t fooling him.
Our cover was blown one fall night
newsletter of the penn memory center
Happiest with her family, 2002
Colette’s mother at her oldest son’s
wedding
when mom’s early onset Alzheimer’s
brought on aggressive and chaotic
behavior. She was belligerent and
demanded that Dad leave their house
because “this guy” was overstaying his
welcome. That night my father and I
realized two things very quickly: we still
had a lot to learn about Alzheimer’s, and
we could not keep my mother’s secret
any longer.
But how would we tell family and friends
that Mom had Alzheimer’s? How do
you convey what Alzheimer’s is, what it’s
capable of and, most importantly, how do
you figure out how to handle it?
We decided a letter was best. Anyone
who has dealt with Alzheimer’s knows it’s
a complicated disease, a moving target.
We felt putting everything in writing was
the best way to share the information
accurately and equally. It would give
spring 2013
page 6
everyone time to absorb the news
before responding, and maybe it would
be therapeutic for my Dad, Mom’s
primary caregiver, to document and
share the story of her decline.
We also wanted to give as many details
about Alzheimer’s as possible, and
I’m embarrassed to say that despite
the previous years, it was the first
time I went online and researched
Alzheimer’s disease. I remember
feeling foolish as I read the warning
signs provided by the Alzheimer’s
Association and the seven stages of
the disease. My mother had been
progressing through the stages in
an almost methodical fashion, as
if Alzheimer’s was checking off its
accomplishments one by one.
The first letter went to my brothers
and sisters. I detailed the visits to the
neurologist, the following years, and
the night Mom suddenly didn’t know
Dad or have any idea that they had
been married for more than 40 years.
I included all the information I had
on Alzheimer’s—the warning signs,
the stages—realizing that Mom was
already at least in the middle and
maybe even in the later stages of the
disease.
My letter was met with resistance at
first followed by a lot of denial and
some judgment. I heard it all: “She
probably had a stroke,” “You have to
get everything tested, it might be her
thyroid,” “Why haven’t you been going
to more doctors?” “Something like
this doesn’t just happen, take her to
the ER!” I realize that they were trying
to comprehend in one weekend what
I had lived for several years. I think
that’s another reason why the letter was
helpful: it gave people the chance to go
back, read it several times, let it sink
in and perhaps realize that they had
also observed the symptoms. A friend
later said, “Every family member goes
through denial at some point. You have
to let them process it in time.”
A similar letter followed to extended
family and friends. Since a lot of
the reaction was, “What, is she just
forgetful?” another letter went out
detailing the disease. It explained
that along with memory loss Mom
was losing basic abilities, that she
couldn’t be left alone and that
Alzheimer’s affected her mood and
behavior. I would strongly urge
every Alzheimer’s family to write a
letter like this. So many people lack
a basic understanding of the disease,
and it’s important to point out what
your loved one is going through and
specific ways they can help.
When I’ve shared this story in the
past, some have remarked, “It’s a
shame your mother felt such stigma
about Alzheimer’s that she didn’t want
to tell anyone.” I don’t think that was it
at all. I think she was just determined
to hold on to life as she knew it—the
life she had created with her husband,
children and grandchildren. She was
desperately trying to hold on to her
memories. She was a smart, strongwilled woman, and she was going to
give Alzheimer’s the fight of her life.
It was difficult writing those letters,
and it’s still difficult sharing our story.
I still wonder if it’s the right thing to
do, but my family benefitted greatly
from other Alzheimer’s families who
shared the lessons of their journey and
helped us on ours. Mom benefitted
because we were better able to care
for her, keeping her in her own home
until the end. She died 16 months after
those first letters went out, just after
her 69th birthday.
The caregiver, 2010
Always loving and protecting,
Dad took care of her every need.
Little did we know she had less
than two years to live.
Once, before she died, I tried to get a
sense from Mom that sharing her story
was okay. I said, “Mom, we can do
something that may help people who
are very sick, but it means I need to
tell them some personal things. What
do you think?” Ever the civic-minded
woman, she replied instantly, “Well if it
will help others you must do it!”
My mother asked me to keep a secret.
In the end I couldn’t do it. I don’t think
she would mind. n
To learn more about the 7 Stages of Alzheimer’s disease, visit http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp.
INSIGHT
newsletter of the penn memory center
spring 2013
page 7
Take one poem and call me in the morning
The power of language arts to boost memory, imagination and delight
by Deborah Fries
E
veryone who has stopped, mid-sentence, while the right word drifted into
the ether knows that language can be an unreliable social currency. Even
the masterful exercise of language does not ensure its permanence. Poets and
novelists including Iris Murdoch, Agatha Christie, Louis Simpson, Jack Gilbert
and Jack Agüeros have lost the skills and pleasures of verbal engagement as
their dementia advanced.
But for poet Gary Glazner and playwright Anne Basting, whose long-established verbal
therapies have been adopted across the country, language remains an exciting medium
throughout the lives of the people they serve—opening doors to memory, imagination,
delight and connection.
A 1997 grant from
rival for one hour/
Poets & Writers
October’s bright blue
magazine made it
weather.” Glazner has
possible for Gary
collected core poems
Glazner to develop
in Sparking Memories:
and later launch the
The Alzheimer’s Poetry
Alzheimer’s Poetry
Project Anthology,
Project (APP), a
and has gathered
nationwide project
works in Spanish,
that aims to “spark
German, Hebrew and
memories with
Yiddish for use in the
poetry.” Since it was
APP’s programs.
introduced in 2004,
APP has held 300
Another key
programming sessions
ingredient of
Gary Glazner, founder of the Alzheimer’s Poetry
in the U.S. and abroad
this modality is
Project, with a program participant in New Mexico
and has provided
enthusiasm, and
Photo by Margaret Victor
training for more than
Gary Glazner is an
3,000 health care workers and family members who want to enthusiast. When I recently spoke to him by phone from
learn Glazner’s techniques.
his hotel room in Baraboo, Wisconsin, a long day hadn’t
diminished his eagerness to discuss the work being done
At the core of the project are 66 classical poems and rhymes through poetry. A decade after introducing his approach—
that unlock echoic memory, that sensory memory where
which utilizes performance skills, call-and-response
poems learned in grade school and lyrics from 40 years of
readings and the connection of hand-holding—Glazner is
popular tunes are stored. Echoic memory is how the brain
still a believer in its power. Over and over, he sees people
retrieves the words to “How Much is That Doggie in the
experience emotional release and brightened affect as they
Window?” and the marching rhythms of “O suns and skies
are caught up in familiar rhythms and retrievable lines
and clouds of June/And flowers of June together/Ye cannot
of verse. Routinely, he encounters men and women who
INSIGHT
newsletter of the penn memory center
spring 2013
page 8
had formerly retreated into silence surprise family and
caretakers by completing lines of verse, their sense memory
magically unlocked by iambic pentameter.
Glazner is a tireless advocate of improving quality of life
through the arts, and he applauds the successful programs
that are being used by his creative colleagues: Minneapolisbased Kairos Alive! dance company, the “Meet Me at
MoMA” Alzheimer’s Project and programs inspired by
the Canadian documentary, “I Remember Better When I
Paint.” He’s especially impressed by the work being done
at the Center on Age and Community at the University of
Wisconsin-Milwaukee.
Anne Basting, executive director of the center, has spent
more than 15 years developing methods for incorporating
the arts into long-term care, with a special focus on
transcending cognitive limitations. Her approach, evident
from the title of her 2009 book, Forget Memory: Creating
Better Lives for People with Dementia, does not rely on
memory.
Basting is a scholar, educator and playwright who in 1998
developed an engaging improvisational method that taps
into participants’ imagination rather than memory. The
TimeSlips Creative Storytelling Project relies on visual
imagery and facilitators to encourage people to express
themselves and connect with others. The stories amuse
and reflect the tellers’ understanding of human nature.
Although group storytelling produces a particular kind of
fun, Basting’s technique does not only succeed in a clinical
setting.
“Family caregivers can learn the basic components of using
the imagination
quite easily
without having
to take on any
single program.
The TimeSlips
training is easy to
do and designed
for one-on-one as
well as groups, and
family members
Anne Basting, creator of the
are doing it as well.
TimeSlips Creative Storytelling
There is an initiative
Project, at Luther Manor senior
happening through
living facility in Milwaukee
the National Center
Photo by Alan Magayne-Roshak, UWM
for Creative Aging
Photo Services
that is bringing
these basic tools
from a variety of programs together for family caregivers.
They are holding meetings in May, and I imagine their work
will be done in a year,” says Basting.
If caregivers choose to engage their loved ones through
poetry or storytelling, Basting notes in Forget Memory
that connection requires an awareness of how these
processes work: “They invite us into the present moment,
deep listening and occasional silence—a place that
feels increasingly foreign in our multitasking culture of
distraction.”
For those interested in learning techniques used by the
Alzheimer’s Poetry Project and the TimeSlips Creative
Storytelling Project, both programs offer affordable online
training for families, volunteers and clinicians. n
Learn more about how creativity can make a difference
www.alzpoetry.com – The Alzheimer’s Poetry Project: resources and video with registration for online training
www.timeslips.org – Ideas and photos to start stories at home with online training and facilitation guidance
www.youtube.com – Search “UWM Spotlight on Excellence: Anne Basting” to watch a TimeSlips group in action
www.storycorps.org/initiatives/mli – StoryCorps’ Memory Loss Initiative with a downloadable toolkit and CD
www.ursinus.edu – Berman Museum tours at Ursinus College are designed to spark discussion
INSIGHT
newsletter of the penn memory center
spring 2013
page 9
Growing with dementia
How dementia transforms patients and the families who care for them
by Colleen Davis
There is no way to erase the sadness of slowly losing a
parent to dementia. But families who work together
to survive the challenges of the disease may earn the
solace of strong, respectful relationships that outlive the
illness. This is the story of one family that tackled not
only difficult care decisions, but also barriers from the
past, to emerge as a stronger whole.
S
ince 2011, when I began writing
about dementia care, I’ve heard
too many sad stories. Some were of
siblings who did little or nothing to
assist their ailing parents. Others were
of controlling siblings who took charge
of all decisions and locked others out
of caring for their parent.
Situations like these create
extraordinary pain for family members
who are grieving the losses inflicted
by dementia. Although most explain
they’re trying to do what’s right, it’s
easy for some to either sit still, or take
action, without realizing how their
behavior affects other family members.
The best story would tell how—after
their relative is gone—everyone
involved could look back on their
loved one’s dementia journey and
say their contribution was useful.
Families with a history of sparring may
find this ending difficult to imagine.
However, negotiating a collaborative
process for delivering parental care
can give families a chance to forge new
relationships that will sustain them
through challenges and craft a tale that
ends with dignity for all.
INSIGHT
One family’s story
My family may be lucky. My mother
only had two children, so we had
fewer parties conferring over difficult
decisions. When Mom was first
diagnosed with dementia, my sister
and I were equally unprepared for
her illness because she had always
been so healthy and organized.
Yet, even with just two of us, we
sometimes disagreed about the
right thing to do.
The portrait of a lady
The author’s mother, Janet Davis,
in a portrait by artist Randall Sellers
completed in early 2012.
There is something about a parent’s
illness that knocks siblings back into
their childhood roles. When the
parent is no longer there to mediate,
relationships become even more
complicated. Most adult children
see caregiving problems from the
perspective of their former family role.
The eldest child expects to be relied
on to manage crises and has a sense of
duty shaped by the way he or she was
raised and the responsibilities he or
she was asked to fulfill many years ago.
This “manager” impulse gets even
stronger if the parent has assigned
the child the legal duties of Power of
Attorney. The title is imposing, and
newsletter of the penn memory center
it’s a job that most people assume
with trepidation. Holding the Power
of Attorney, however, doesn’t mean
shouldering all burdens. Doing
everything alone can add even more
stress to care management, and this
can threaten family harmony.
Building a network of support
All family members have at least one
resource they can offer not only to
their loved one with dementia but to
each other. If one sibling is raising
children and has no time to visit, they
may still be able to cook a few meals
and help out the person who provides
spring 2013
page 10
daily support to the parent. Brothers
who feel they lack nurturing skills can
still help out with grocery shopping or
even car maintenance for a sibling who
is primary caregiver. When faced with
the responsibility of taking a loved
one to all doctor’s visits, even getting
a car inspection can feel like a huge
imposition.
In our family, my sister lived hours
away. I was the one who had space
in my house and a flexible job that
allowed me to care for Mom at
home. My sister was able to use
her experience in the health care
field to help follow up on specialist
appointments, MRIs, blood work
and prescriptions. Hours of her time
were spent tracking down lost bills
and resolving insurance claims. Her
attention to these matters gave me
more time to focus on meeting Mom’s
daily needs.
As our mother’s illness wore on, we
set up times for regular phone calls to
trade observations on her changing
symptoms. We added Mom’s best
friend as part of our “consultation”
group and kept her informed of what
was happening so she could share
information with Mom’s other friends.
Every “big appointment” at the Penn
Memory Center became a family
event. A nice lunch or a walk followed
each doctor’s visit. Decisions about
medication and treatment were made
collectively, usually after we each did
research on our options. If we couldn’t
be together to discuss a crucial matter,
my sister and I used Skype. The most
important part of the process was
taking the time to talk.
INSIGHT
Breaking barriers
Talking may not come easily at first.
Caregivers can often feel overwhelmed
and become possessive, feeling like no
one else could have added insight
about their loved one’s problems.
Overachievers may also feel a need to
manage everything. At the other end
of the spectrum, those with no legal
responsibilities may fear their offers
of help will be rebuffed because family
dynamics have always relegated them to
the sidelines. Regardless of the family’s
history, there is no better time for
lowering these barriers than the moment
when dementia sets in.
Involving everyone in the care process
allows each family member to create some
good memories before the disease takes
its final toll. Our mother’s losses brought
us great grief and sadness, but dementia
did not end our family joy. Together, my
sister and I had many shared celebrations.
She spent three-day weekends with mom
and me whenever her work schedule
allowed, and we invited friends to join us.
When my mother’s illness outstripped
my ability to care for her at home,
together my sister and I looked at
residential facilities. After two years of
caring for Mom the prospect of moving
her gnawed at my heart, but we were able
to find a place that put my mom very
close to my sister. She was able to pick
up where I left off by making daily visits
and paying scrupulous attention to all
aspects of her care.
In the end, both of us grew stronger by
working towards the common goal of
providing the best possible care for our
mother. These bonds offer the truest
example of a silver lining. n
newsletter of the penn memory center
Don’t let caregiving
become a “family feud”
Five tips for creating successful
caregiving relationships
Create a long-term care plan
as a family team by consulting
with medical, financial and legal
professionals. The Alzheimer’s
Association is a good resource for
getting recommendations.
For families who are geographically
dispersed, a weekly online chat
through Skype or Google Hangouts
is a good way to connect.
If one person is providing a large
measure of support remember
to give that primary caregiver a
sympathetic ear.
When you are stressed or angry,
avoid talking about sensitive issues
like money or legal matters.
Treat each other with respect. Try to
find even small ways that everyone
can contribute regardless of their
income, time commitment or
distance.
Colleen Davis is a freelance writer
and author of a website for caregivers
of loved ones with dementia,
betweenthepondandthewoods.com.
spring 2013
page 11
With gratitude, we
recognize these
recent donors
Gifts received from mid-November 2012
through early March 2013
Gifts of $100,000
In memory of
• Dr. Luigi Mastroiani
Julius H. Caplan Charity
Foundation
Gifts of $25,000
The Hofmann Family Fund
Progress against Alzheimer’s disease
depends on your support for our
research, programs and patient care.
Gifts $1,500-2,500
Dr. Raman Mitra
Mark Gilman
The Snowden Foundation
Gifts $1,000-1,499
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 be cut back.
This hard reality makes your tax-deductible gifts and
bequests even more vital now to aid our research and
nurture our advances.
We are especially appreciative of those who have
made gifts in these harsh economic times. 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 Irene Lukoff at
(215) 573-0187 or [email protected]. Thank you.
INSIGHT
Gifts $500-999
Rosemary Woodland
Steve and Misun Min
George Nofer
In memory of
• Stanley Borzelleca
Michele Fillippo
Marissa and John Czop
Linda and Michael Sulock
Anne Marie and Evelyn
Pastorius
Pasquale and Mildred
Giambrone
Eugenia Romano
Dennis and Susan Yankosky
Elizabeth Czop
Eugenia Riley
Sharon and Anthony Sandor
Donald Riley
Mary Fabris
Dorothy Seldis
Amelia and William Irwin
Elizabeth Cecil
Gifts $250-499
In memory of
• Betty Stephey
James Malloy
Gary and Carol Miller
Phyllis and Rudolf Wertime
Kathy and Russell Gehrt
Robert and Jane Wingerd
Marjorie Bogosian
Gary and Bonnie Davis
Charles and Diane De Mirjian
Gary and Nancy Gembe
Robert and Carolyn Scott
Nancy Scott
Harry and Eileen Stephey
Carrie Pure
William and Brenda Blair
June and Lucille Balukjian
Kenneth Hummel
In honor of
• Dr. Steven Arnold
Stephen Kieran
Neil and Barbara Ensley
newsletter of the penn memory center
spring 2013
In memory of
• Charles Kominsky and
Carl Segal
Dr. Michael Amesquita
In honor of
• Dr. Christopher Clark
Mr. and Mrs. Gerald Clark
In honor of
• Dr. R.J. Pignolo
Nancy Lonsdale
In honor of
• Etta Mendelssohn
Carol and Ieuan Mahony
In memory of
• Gerard Thomas
Dr. Peter Thomas
page 12
In memory of
• Glenys Maia
Michael Ferro
Douglas Duer
Mr. and Mrs. Robert Wilt
In memory of
• Graydon Cass
Patricia R. Miller Revocable
Living Trust
Margaret Cass and Patricia
Miller
In memory of
• J. Peter Hynes
Suzanne and David Auten
Shirley Kennedy
Charles Lang
In memory of
• Glenys Maia
Michael Ferro
Douglas Duer
Mr. and Mrs. Robert Wilt
Gifts $100-249
Mr. and Mrs. Harold
Schwartz
In memory of
• Beanche Manning
Mr. and Mrs. Melvin
Manning
In memory of
• Helen Foster Morgan
Natalie Macy
In honor of
• J. Clay Smith, Jr.
Andrea Williams
In memory of
• John Cornell
Suzanne Cornell
Eileen Ruggiero
Gifts to $99
In memory of
• Sherwood Shook
Donna Searer
Sarah Clark
Ruth Helm
Mr. and Mrs. Brent Peterson
Mr. and Mrs. George
Maalouf
Almeda Henry
Mr. and Mrs. Alfred Beers
Edith Ferris
Dave Harvey
Chuck Walter
Mr. and Mrs. Michael
Iacocca
Mr. and Mrs. Stephen
Schecter
In memory of
• Mary Curtin
Dr. Patricia Curtin
In memory of
• Dr. Eli B. Harmon
Edward and Diane
Hermenau
Joanne Draghetti and Barry
Salussolia
Samuel and Gae Burchill
In memory of
• Morris Tragerman
Steven Weiss
In honor of
• Rella Seidenfeld
Gregg Geffen
In memory of
• Katharine Harkins
Mr. and Mrs. James
McCracken
In memory of
• Bernice Kane
Lillian Cosenza
In memory of
• Dr. Henry Louis
Ferguson
Mary and Polly Dunn
In memory of
• Elizabeth Coyle
Sandra McCoy
INSIGHT
In memory of
• George Lane
Lynne Santaniello and
Jonathan Nutt
In memory of
• Jacqueline Bilker
Michael Bilker
In memory of
• Nicholas Dimitri
Dale and Selma Drucker
In memory of
• Peg Sheneman Tatum
Anne McLaughlin
In memory of
• Ruth Failer
Marc Price
In memory of
• Susan Cation
D. Brady Franklin
Your gifts make our efforts possible.
w
hen contemplating your own final arrangements or those of a
loved one, please consider an obituary request that, instead of
flowers, donations for Alzheimer’s research at the Penn Memory Center
be made to:
“Trustees of the University of Pennsylvania” (write “ADC-PMC” on the
memo line)
And mailed to: Penn Memory Center (Attn: Chelsea Brandt)
3615 Chestnut Street
Philadelphia, PA 19104
Questions? In memory of
• Joseph O’Brien
Kathryn O’Brien
In memory of
• Emily Camardo
Mr. and Mrs. Frank
Camardo
Call Chelsea Brandt at (215) 615-0975
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
spring 2013
page 13
News
& Events
McKeown Foundation donation provides
support for PMC caregiver programs
by Chelsea Brandt
he McKeown
Foundation
has donated $11,000
to support caregiver
programs at the Penn
Memory Center. Led
by the infectious
enthusiasm of
President and CEO
Joe McKeown, the
foundation’s mission is Left to right: Suzanne Sawyer, Chief
to foster care, support
Marketing Officer of Penn Medicine, Felicia
and research for
Greenfield, LCSW, Dr. Steven Arnold, Joe
Alzheimer’s disease.
McKeown and Dr. Jason Karlawish
After losing their
patriarch, William J. McKeown, Jr., to Alzheimer’s disease in 1991, the family
has worked tirelessly to spread awareness and garner support for the cause.
“I’m fortunate to have my wife, daughters and family. My nieces, Michelle
and Maggie, were so close to their grandpop. All six of my siblings are
involved,” Joe McKeown said.
The Foundation’s premier event is the annual William J. McKeown, Jr. Golf
Classic “Fore” Alzheimer’s. This year’s Fore will take place May 20 at the
Commonwealth Country Club in Horsham. On April 9, the foundation will
also hold the “Score Against Alzheimer’s Event,” at Kitchen Bar Restaurant
Café in Abington.
The McKeown Foundation’s events are a sight to be seen—Joe McKeown
sums them up by describing them simply as “a wow.” The awareness and
support they raise for Alzheimer’s disease not only sustain programs
dedicated to Alzheimer’s care and research, but they also uphold the
memory of William J. McKeown, Jr. As the founder of one of Philadelphia’s
largest beverage distributing firms, McKeown, Jr. was committed to charity
involvement. The foundation strives to uphold this legacy.
Photo by Mary Tong
T
The Penn Memory
Center is pleased to
welcome Nicholas
Tsopelas, MD, as
the center’s newest
clinician. Dr. Tsopelas
is board certified
in geriatric psychiatry, and prior to
joining the Penn Memory Center he
completed fellowships at the Mount
Sinai Medical School and at the
Harvard School of Medicine. Born
and raised in Athens, Greece, Dr.
Tsopelas brings a global perspective.
“I see Alzheimer’s disease as a global
problem. With the population living
longer we need more resources and a
way to tackle the disease,” Dr. Tsopelas
said.
Research Coordinator
Jessica Nuñez has
been awarded as the
recipient of the 2012
Healthcare Hero
award through Penn
Medicine. Jessica
received the nomination from Lori
and Keith Crammer, a participant and
informant couple formerly involved in
the bapineuzumab, or Bapi, study. For
Jessica, receiving the Healthcare Hero
award was a welcome pat on the back
for her work as a coordinator at the
Penn Memory Center. “After working
here for so many years it shows that
people trust me with their loved one’s
care,” Nuñez said.
On December 5,
Steven Arnold,
MD, Director of
the Penn Memory
Center, presented
the lecture “Beta-
“My grandfather was very generous and frequently gave back to the
community. I like to believe we are continuing that tradition by using our
family’s experience to help those currently facing the same struggles,” said
Michelle Jenkins, granddaughter of the late William J. McKeown, Jr.
For more information on getting involved visit www.mckeownfoundation.org.
INSIGHT
newsletter of the penn memory center
spring 2013
page 14
Amyloid Neuropathology in
Cognitively Normal Individuals:
Preclinical Alzheimer’s Disease
or Cognitive Resilience?” at the
51st Annual American College of
Neuropsychopharmacology (ACNP)
Meeting in Hollywood, Florida. The
ACNP drew a crowd of 1,700 guests
and experts to the forum, which
allowed for the exchange of current
research related to brain behavior-drug
interactions.
On December 11,
Melissa Livney, PsyD,
clinical psychologist
at the Penn Memory
Center, and George
and Betsy Ulmer, a
couple participating
in Alzheimer’s research at the Penn
Memory Center, were featured
on NBC Nightly News with Brian
Williams in the segment “Caregivers
neglect their own health in order
to look after others.” The number
of Alzheimer’s patients, and in turn
caregivers, in the United States is
growing, and the segment focused on
the stress that Alzheimer’s disease can
cause for caregivers. “People need to
give themselves permission to take
care of themselves,” said Dr. Livney.
“That’s what we focus on.”
On February 7, 2013
Gov. Tom Corbett
signed an Executive
Order establishing
the Pennsylvania
Alzheimer’s Disease
State Planning
Committee at the University of
Pennsylvania’s Perelman Center
for Advanced Medicine. One in 12
INSIGHT
Pennsylvania families are affected by
Alzheimer’s disease in Philadelphia,
and the committee will work to
create a state plan to address the
growing Alzheimer’s disease crisis in
Pennsylvania. “Since Pennsylvania is
the fourth ‘oldest’ state in the nation,
it is critical that we unite to find a cure
and help those who are living with
Alzheimer’s disease, as well as those
who care for them,” Gov. Corbett said.
John Trojanowski,
MD, PhD, and Jason
Karlawish, MD,
both represented
the University of
Pennsylvania at the
11th International
Congress on Alzheimer’s and
Parkinson’s Disease in Florence,
Italy. Dr. Karlawish presented the
lecture “Disclosing Imaging Data
to the Unaffected” on March 5
and Dr. Trojanowski presented the
lecture “Tau-Focused Therapies for
Alzheimer’s Disease and Related
Tauopathies” on March 8, both to
international audiences.
The Perelman School
of Medicine and
the Department
of Medical Ethics
and Health Policy
at the University
of Pennsylvania
announce the creation of the Penn
Neurodegenerative Disease Ethics and
Policy Program. The new program
will support research, education
and training to identify and address
the ethical and policy implications
of advances in the diagnosis and
treatment of neurodegenerative
newsletter of the penn memory center
diseases. Jason Karlawish, MD,
Associate Director of the Penn
Memory Center and an international
leader in the neuroethics of aging, will
serve as the program’s inaugural director.
Karlawish describes the program as
“first of its kind. I’m honored to serve
as the inaugural director.”
Roy Hamilton,
MD, Penn Memory
Center clinician, has
been awarded the
2013 University of
Pennsylvania Dr.
Martin Luther King,
Jr. Commemorative Award for
Community Service. The award
reflects his exemplary work in
education and outreach programs
aimed at providing mentorship to lowincome students. “We’re collectively
trying to help students and trainees
overcome the barriers that separate
them from success when they transition
from one step of career to the next,”
said Dr. Hamilton.
On April 8 and 9 the
Institute of Medicine
held a workshop
titled “Accelerating
Therapeutic
Development for
Nervous System
Disorders towards First-in-Human
Trials.” Jason Karlawish, MD, was in
attendance at the workshop, which
explored opportunities to accelerate
the discovery and approval of new
therapeutics for nervous system
disorders in light of recent doubts
on the ability of animal models to
accurately predict effectiveness in
humans.
spring 2013
page 15
PENN MEMORY CENTER
PERELMAN CENTER FOR ADVANCED MEDICINE
PRSRT STD
US POSTAGE
3400 CIVIC CENTER BOULEVARD
PAID
PERMIT NO. 352
2ND FLOOR, SOUTH PAVILION
BELLMAWR, NJ
PHILADELPHIA, PA 19104
The Penn Memory Center is pleased to announce
new eight-week Cognitive Fitness classes
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, DESIGNER & WRITER
Chelsea Brandt
[email protected]
215-615-0975
WRITERS
Lisa Bain
Colette Cassidy
Colleen Davis
Deborah Fries
OFFICES
3615 Chestnut Street
Philadelphia, PA 19104
3400 Civic Center Blvd.
2nd Floor, South Pavilion
Philadelphia, PA 19104
WEB www.pennadc.org
l The Penn Memory Center is
a National Institute on Agingdesignated Alzheimer’s Disease
Center (ADC), one of only 30 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 wellbeing 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
The Penn Memory Center is pleased to announce new dates
and updates for Cognitive Fitness, an educational program
designed for older adults who want to improve their memory
and thinking.
Starting in June 2013, Cognitive Fitness classes will be
shortened from 12 weeks to a new eight-week format, and
tuition decreases will also take effect. These changes will
make the course even more accessible to those with busy
schedules who still want to learn the strategies, habits and
behaviors that have been shown to boost memory and
optimize brain health for older adults with normal memory,
those with concerns about their memory or for people with
mild cognitive impairment (MCI) who want to improve their
memory and thinking.
Put your cognitive
wheels in motion with
Cognitive Fitness.
The new eight-week program is based on empirical research
and will provide education on lifestyle choices shown to
be beneficial for successful aging. It combines strategies to help make up for memory
loss, specialized cognitive stimulation software designed to enhance speed and accuracy
of thinking and individualized wellness plans. Goals of the program include increased
independence, sharpened focus and memory, improved communication in relationships
and the practice of effective coping mechanisms.
Early enrollment for summer 2013 is now open. The summer course will run from
June 3 through July 26 and will take place at the Perelman Center for Advanced Medicine
at the University of Pennsylvania from 10 a.m. to 1 p.m. on Tuesdays and Thursdays. Other
upcoming classes will be offered:
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Fall 2013: September 16 – November 4*
Winter 2013: November 11 – January 10*
Winter/Spring 2014: January 27 – March 21*
*Two class locations will be offered for each session. One will take place at the Perelman
Center for Advanced Medicine at the University of Pennsylvania, and another course will be
offered at a soon-to-be-announced location in the Philadelphia suburbs.
For more information or to register, contact Felicia Greenfield at (215) 614-1828 or
[email protected].