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INSIDE
Winter 2014 • Volume 37
Crisis for Caregivers: Alzheimer’s in New York City p. 21
Thank you to our Junior Committee, who generously sponsored this issue of our newsletter
President’s
Message
New
York
City Chapter
Board of Directors
Princess Yasmin Aga Khan
Honorary Chairperson
Benjamin J. Jenkins
Co-Chair
Jeffrey N. Jones
Co-Chair
Stephen P. Casper
Vice Chair
Pauline Yeung-Ha, Esq.
Secretary
Ari F. Cohen
Treasurer
Directors
Elvira Bisignano
William M. Brachfeld
James E. Craige, CFA
Marianne Dziuba-Fiore
Daniel Finke
Lori Oscher Friedman
Matthew S. Furman
David Geithner
John H. Gernon
Nathan Halegua
Simon Kooyman
Linda LaGorga
John R. Latham
J. Francis Lavelle
Abraham Podolsky
Elaine Thomas
Mark A. Zurack
EMERITUS
Marilyn L. Cohen Susan V. Kayser, Esq.
EX OFFICIO
Steven E. Boxer
Sunnie Kenowsky Irving, D.V.M.
Heath B. McLendon
Ari Naamani-Goldman (Junior Committee)
executive staff
Peggy Chu
Chief Administrative Officer
Lou-Ellen Barkan
President & Chief Executive Officer Carol Berne
Senior Vice President of
Jed A. Levine
Development, Director of
Executive Vice President,
Leadership Giving
Director of Programs & Services
Matt Kudish
Senior Vice President of
Caregiver Services
Steve Maggio
Vice President, Chief
Financial Officer
Nicholas Emerson
Vice President,
Director of Operations
Hillary M. Caceres
Director of Marketing &
Communications
staff
2
Gail Allen
Manager, Physician Outreach
Stephanie Aragon
Manager, Helpline
Ana M. Araujo
Care Consultant
Asif Baksh
Director of IT & Print/Design
Alejandro Berti
Dementia Care Trainer
Danielle Bruzese
Manager of Caregiver Services
Yvette Bynoe
Manager, Concierge Services
Linda A. Centeno
Executive Assistant
Edward Cisek
Director of Program Evaluation
Christian Doucette
Inventory Manager
Candace Douglas
Manager, Constituent Events
Anne Foerg
Manager of Care Consultation
Bart Gentile
Systems Administrator
Lara Green
Manager of Early Stage Services
Nancy Lee Hendley
Jessica Herold
Helpline Associate
Elizabeth Hodges
Constituent Events Associate
Karen Holland
Director of Volunteer Leadership &
Development
www.alz.org/nyc
Marcia Langhoff
Executive Assistant
Fai Lin Lau
Manager, Chinese Outreach
Anastasiya Lee
Russian Outreach, Medic Alert ® +
Safe Return® Associate
Sharon Lee
Marketing & Communications
Associate
Barbara London
Receptionist
Maggie Marra
Helpline Associate
Kerianne Marston
Program Assistant, Early Stage
Services
Makaria Martin-William
Accounts Payable Associate
Sandra Martinez
Manager, Database
Caitlin McCurn
Foundation Relations Officer
Daquan McKie
Office Assistant
Xue Mei
Senior Accountant
Suzanne Metzger
Database Analyst
Maria Mursch
Care Consultant
Serene Nie
Care Consultant
Wendy J. Panken
Manager, Support Groups
Paula Rice
Manager, African American
Outreach
Roberto Reyes
Manager, Latino Outreach
Danielle Robitaille
Manager, Communications &
Public Relations
Elizabeth Bravo Santiago
Manager, Medic Alert ® +
Safe Return ®
Sharon Shaw
Consultant
Hillary Stuchin
Director of Public Policy
Amy Torres
Crissy Vicendese
Development Associate
Juliana Villegas
Spanish Outreach, MedicAlert ®+
Safe Return® Community Associate
Lauren Volkmer
Julie Wang
Manager, Operations &
Administration
Lorna Walcott-Brown
Care Consultant
Alex Wong
Financial Analyst
Ann Wyatt
Residential Care Policy & Strategy
Consultant
Jacqueline Zapata
Medic Alert ® + Safe Return®
Administrative Assistant
in this
EDITION
President's Message
3
From the Program Director
4
Chapter in the News
6
Junior Commitee Outreach
7
Economic Impact of Alzheimer’s
8
From A Different Perspective
10
Caregiver’s Corner
11
Stories That Move Us
13
Development Report
16
Naming Opportunities
17
Support Groups
18
Chapter Events
19
Public Policy
20
Crisis for Caregivers
21
Dear Helpline
22
Managed Long Term Care
23
Diversity Outreach Update
24
Corporate Relations
26
Athletes to End Alzheimer’s
27
50-hour Dementia Care Training
28
N.Y.C.A.R.E.
29
Winter 2014 Calendar
30
Blondes vs. Brunettes®
32
LAK Public Relations, Inc. Public Relations
Jenna Hammond Copy Editor
www.alz.org/nyc
24-hour Helpline: 1-800-272-3900
Join us:
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The Alzheimer’s Association, New York City Chapter
does not endorse products, manufacturers or services.
Such names appear here solely because they are
considered valuable as information. The Association
assumes no liability for the use or content of any
product or service mentioned.
President’s Message
Dear Friends,
U
.S. Senators Chuck Schumer and Kirsten Gillibrand
had been fully briefed about their meeting with
the New York City Chapter of the Alzheimer’s
Association. They knew what to expect.
Lou-Ellen Barkan
President & CEO
[email protected]
We were there to lobby Congress for
increased research funding; to ensure
that appropriations were made for
the National Alzheimer’s Project Act;
and to stress the need for education
and awareness programs, caregiver
resources and early detection.
should have been developing
new, deep and important adult
relationships with their parents, their
worlds turned topsy-turvy. Their
roles reversed. The child was now
the caregiver, the protector and the
provider.
But nothing could have prepared the
Senators for who they saw coming
through the door: young professionals
in their 20’s and 30’s – passionate
and incredibly knowledgeable about
Alzheimer’s and its impact on the
healthcare system, the economy,
social service and, sadly, their own
families. Any preconceived notions
the Senators might have had about
Alzheimer’s being an “old person’s”
issue were quickly dispelled.
I soon learned, though, that this was
not a generation that would stand by
silently as the epidemic gripped their
families and the nation. For them,
this was personal, not business.
professionals in their 20’s
For too many years, Alzheimer’s was
a hidden disease. Nobody wanted to
talk about it. Nobody even wanted to
think about it. And while President
Ronald Reagan’s stunning revelation
in 2004 that he had Alzheimer’s
changed the conversation, it is
the young people of our Junior
Committee who have given this
disease a new strong voice.
about Alzheimer’s and its
I mention this meeting because it
parallels my own experience here
at the Chapter. When I became
President & CEO in 2004, I
anticipated that I would primarily
be working with elderly people
who were taking care of much older
people in the throes of dementia.
But very early in my tenure here,
my expectations and perceptions of
Alzheimer’s, my job and what this
organization was all about were
completely upended by members of
our Junior Committee.
These were young people from all
walks of life and every industry who
all felt the sting of Alzheimer’s. Some
were even losing their moms and
dads to early-onset dementia. At a
time when they
These young professionals have
become a powerful force. From
advocacy to fundraising, their
impact is palpable. Their list of
accomplishments is long. In 10 short
years they have raised more than
$2 million, becoming the Chapter’s
largest single fundraiser. The
Committee’s work has also funded a
manual to improve care for nursing
home residents with dementia. And
they are active in raising Alzheimer’s
awareness by speaking at senior
centers, community organizations,
clubs, congregations and schools.
But nothing could have
prepared the Senators
for who they saw coming
through the door: young
and 30’s – passionate and
incredibly knowledgeable
impact on the healthcare
system, the economy,
social service and, sadly,
their own families.
What happens next in the
Alzheimer’s community is largely
up to young people like our Junior
Committee. I am confident that
in the years to come, as the mantle
of leadership passes from my
generation to theirs, their advocacy
and actions will help lead us toward
great advancements in the search
for effective treatments and a cure
for Alzheimer’s, and in raising
the standard of care for our entire
community.
We salute them and thank them.
Their commitment and sacrifice – all
to honor the people they love – is
inspiring.
www.alz.org/nyc
3
From the Program Director
Dear Readers,
A
s we open the doors in 2014, we say goodbye to two
wonderful staff members. Paulette Michaud, Manager
of Early Stage Services, who retired in October after
16 years of service, and her colleague, Early Stage Manager
Lauren Tiede.
Paulette started her career as
a student intern, writing a
monograph based on interviews
with members of our Early Stage
Support Group. She taught our
Family Caregiver Workshop
and our 50-hour Dementia Care
Training for Professionals program.
It was a natural progression when,
after leading her own early stage
support group, she organized a
new department to expand services
for those in the early stage of
Alzheimer’s. Paulette’s integrity
and reasoned approach ensured that
clients’ needs came first.
We also say goodbye to Lauren,
who is relocating after six years
of working closely with Paulette.
Lauren’s concern for her clients was
evident in every interaction, every
MemoryWorksTM session, every
support group meeting. We wish her
the very best as she embarks upon
the next stage in her life. Both are
consummate professionals and we
will miss them.
In our first winter season in the new
space, we are focused on building
and enhancing our programming.
We will take advantage of The Harry
and Jeanette Weinberg Early Stage
Center and expand its utility for our
clients and their families. To lead the
effort, we’re delighted to announce
that Matt Kudish has been promoted
to Senior Vice President of Caregiver
Services. Matt’s goal is to ensure
that all clients have the opportunity
to understand and participate in all
programs, regardless of whether their
first point of contact is a request for
a referral for a diagnosis, a residential
care program or a MedicAlert® +
Alzheimer’s Association Safe Return®
bracelet.
4
www.alz.org/nyc
In addition to building programs
in Manhattan, we are delighted to
announce that thanks to a generous
grant from the Stavros Niarchos
Foundation, we will expand our
services in Brooklyn and add a Care
Consultant in Queens. We also plan
to start a support group for Spanishspeaking families in the Bronx, and
continue to find new ways to bring
our services to those on Staten Island.
It’s wonderful to announce that
under the tenacious leadership of
our Residential Care Manager, Ann
Wyatt, we are coming to the final
phase of our 30-month Palliative
Care for Advanced Dementia:
Training and Implementation project.
In its first year, the project has already
demonstrated valuable outcomes for
our three nursing home and hospice
partners. We look forward to sharing
the final evaluation and reports.
Following the completion of our
Caregiver Survey, distributed in
partnership with the Manhattan
Borough President’s office, we are
working to create the first New York
City plan to strategically deal with
the growing impact of Alzheimer’s
disease. Our immediate goals
include engaging and educating
the Mayor and members of his
new administration as well as the
Department of Health.
Our public partnership will also
help us build our MedicAlert® +
Alzheimer’s Association Safe Return®
registration beyond the current
20,000 enrollees. Our new partner,
Detective McDonough in the missing
persons unit, will help us support our
community, and we will continue
to be an asset to the NYPD as their
leading experts in dementia care.
Jed A. Levine
Executive Vice President,
Director of Programs & Services
[email protected]
Finally, the cover of this winter issue
tells an important story as the issue
is both dedicated to and sponsored
by our amazing Junior Committee
members. Over the past 10 years, as
the Committee has grown in size
and impact, their members have
taken an active role in supporting
our programs, building awareness
and promoting our cause to public
officials at the state and federal level.
Members literally walk the walk (the
Walk to End Alzheimer’s), as well as
run in the New York City Marathon
and spearhead their own gala as
fundraisers. They connect us to
friends, families and colleagues who
need our help. They have become an
integral part of our organization.
Throughout 2013, a truly landmark
year, when we doubled our space,
added staff and enhanced our
programs, the Junior Committee
stood firmly by our side, reminding
us that it is the next generation who
will pay the price if we fail to provide
adequate support for those who need
our help today.
As we anticipate the exciting things
ahead in 2014, we are certain
that one thing will stay constant:
our commitment to those with
Alzheimer’s and those who care for
them.
If you need our help – we are here
24 hours a day at 800-272-3900 or
on the web at www.alz.org/nyc.
Please, if you need our help or know
someone who does, make that call.
You won’t be sorry.
Was last night’s 3 AM call the one that made you
realize Dad needs more help than you can provide?
If you’re suddenly uncomfortable leaving Dad home alone at night, Partners in Care
can help. By asking just the right questions, we’ll determine which of our 11,000
certified home health aides best fits his needs.
Being operated by the Visiting Nurse
Service of New York helps us deliver
the care your loved one needs quickly.
From companionship and meal preparation to
round-the-clock skilled care, we will develop a
personalized plan of care supervised by a
registered nurse. We can often deliver that care in as little as 24 hours.
Put an end to those middle of the night wake-up calls. For private, professional home
care, call Partners in Care at 1.888.9.GET.HELP. You can also visit us on Facebook or
at partnersincareny.org
/PartnersinCareNY
Paid Advertisement
Chapter in the News
Members of the New York City Chapter of the Alzheimer’s Association made a big
splash in the media over the last few months, sharing their professional and personal
Alzheimer’s experiences with reporters at numerous national and local media outlets
including The New York Times, National Public Radio (NPR), and Spanish language
television, Univision.
I
n a special The New York Times supplement called
“Your Money,” Chapter President and CEO LouEllen Barkan discussed her personal experience as a
long-distance caregiver for both her mom and dad. She
also offered advice to other caregivers, including the
importance of planning for your own future and having
an advanced directive and health care proxy. A poignant
companion interview of Lou-Ellen was broadcast on
NPR’s “Marketplace” show.
E
mmy-winning investigative reporter Barbara Nevins
Taylor followed up on The New York Times story and
featured Lou-Ellen’s caregiving story on Taylor’s newly
launched website ConsumerMojo.com.
the Chapter’s Executive Vice President
JedandLevine,
Director of Programs and Services, was also
interviewed by The New York Times in a story about
financial planning in the wake of a terminal illness.
Jed warned caregivers about what to expect. He said
that Medicare coverage for long-term illnesses, like
Alzheimer’s, was less than you might expect.
a
mNew York, a free and widely distributed newspaper,
interviewed Jed for a wide-ranging story about
Alzheimer’s disease and touched on topics including tips
for reducing one’s risk factors, the Chapter’s 24-hour
Helpline, MedicAlert ® + Alzheimer’s Association Safe
Return®, and the Chapter’s Connect2Culture® program.
R
oberto Reyes, the Chapter’s new Latino Outreach
Manager, has also been making the rounds with the
news media. Two important Spanish-language television
shows – Univision’s live morning television show, “Al
Despertar,” and “Dialogo Abierto,” a live Spanish
language television/web talk show – featured Roberto
discussing Alzheimer’s and its impact on the Latino
community. His participation at a Latino outreach event
at Lincoln Hospital was also reported on New York 1
Noticias and News 12 The Bronx. New York Nonprofit
Press also announced his appointment as Latino Outreach
Manager.
A
s thousands of New Yorkers converged on Riverside
Park for the Walk to End Alzheimer’s, the media
joined in the action as well. The Walk was well-covered
by WOR and 1010 WINS radio, WABC-TV and The
New York Times’ Spare Times section. The Brooklyn
Walk, which took place on the Coney Island Boardwalk,
was also featured in a story in the Brooklyn Daily, a
Courier Life publication.
T
he Chapter’s 129-member marathon team raised an
impressive $500,000 – a fact that did not escape the
attention of the New York Nonprofit Press, which reported
on this astonishing accomplishment.
T
he question of how to talk to children about
Alzheimer’s was expertly tackled by the Chapter’s
Matt Kudish, Senior Vice President of Caregiver
Services, and Danielle Bruzese, Manager of Caregiver
Services, in an informative interview that ran in three
publications targeting metro-area parents including Big
Apple Parent, Long Island Parent and Westchester Parent.
The best advice, according to Matt and Danielle, is to be
honest with children and try to explain Alzheimer’s with
words and examples they can understand.
T
he Chapter will continue to work with the media in
the new year on many other stories of importance to
New York City’s Alzheimer’s community.
Jed Levine also hit the airwaves as a guest on WABC
Radio’s “Living Better with Laura Smith,” an hourlong call-in radio show where he discussed Alzheimer’s
and Chapter services. From left: Laura Smith, WABC,
Renata Gelman, Private Care Assistant Director of
Nursing at Partners in Care and Jed Levine.
6
www.alz.org/nyc
Junior President’s
Committee Message
Outreach
Junior Committee Outreach Program
O
n Sunday mornings each
month, a group of Junior
Committee members meet
at the 80th Street Residence, a
memory care assisted-living facility
on the Upper East Side, where they
partner with residents who have
Alzheimer’s and dementia.
Junior Committee Outreach
emphasizes art engagement as a
means to connect with people who
have dementia and facilitate their
self-expression. Making and talking
about art is encouraged by volunteers,
who introduce paint and art history
picture books.
Volunteers learn how to
communicate with people suffering
from memory loss and take part in
debriefing sessions to share their
experiences. Since the program
launched in 2011, volunteer
participation has increased tenfold,
and residents have created wonderful
art that exemplifies life after
diagnosis.
Over the years, art and Alzheimer’s
has been a pertinent topic in the
public domain and at the Chapter,
ranging from educational programs
at NYC museums to scientific
research citing the benefits of
incorporating art in memory care.
Junior Committee Outreach brings
science and humanity together,
offering rewards to both residents and
volunteers. Space is limited.
We look forward to seeing
this program continue for
many years!
To learn more, visit
www.alznycjc.org/outreach.
www.alz.org/nyc
7
The Economic Impact of Alzheimer’s: A Case Study for the Costs
Associated with Caregiving
By John Latham, Board Member
L
et me introduce myself by saying
that I am not a physician, a
research scientist or a caregiver.
However, I married a woman
whose family has been plagued with
Alzheimer’s disease across several
generations. Her family history is the
reason I joined the Board of Directors
of the Alzheimer’s Association, New
York City Chapter. My early passion
for the cause was stimulated by my
interest in understanding how we
could cope better as a family – and
I hoped that I could find a way to
influence and inspire the same passion
in others. My initial objective has been
achieved, but, sadly, my vision of a
cure is still just a dream.
As I thought about the effect of an
Alzheimer’s diagnosis on families, I
asked myself how my own parents
would have coped. They were school
teachers, and our family income never
exceeded $60,000 per year. I grew up
in a community where most people
did not go to college and most felt
lucky if they found a job working
in local manufacturing making $15
to $20 an hour. My personal history
is probably not that different from a
majority of Americans.
To illustrate this, I developed an
income and expense statement for a
married couple with three children.
Bob and Sue are in their early 40’s and
their children are 7, 9 and 11 years old.
Bob has a job at the local loading dock
making about $55,000 per year and
Sue works part-time as bookkeeper
for a local business. She contributes
$16,000 per year to the family income.
Grandma, Sue’s mom, was diagnosed
with Alzheimer’s disease at the age
of 66 and her husband, Grandpa Joe,
is her primary caregiver. Joe and
Grandma live on a fixed income.
Bob and Sue live 1,200 miles away.
Joe understands that Sue’s family and
financial responsibilities preclude her
from actively participating in caring for
her mother.
8
www.alz.org/nyc
Bob and Sue have organized their finances as follows:
ANNUAL INCOME $71,000
House Payment
Home Maintenance/Furnishings Insurance
Insurance
Car Payments
Gas/Oil/Maintenance
Utilities
Life Insurance
Long Term Care Insurance
Rainy Day Fund
Property Tax
Health Insurance
Groceries
Gifts
Clothing
Entertainment
Incidentals
Charitable Contributions
Retirement Savings
Education Savings
Vacation
Income Taxes
$18,000
$1,500
$1,500
$4,000
$1,500
$3,300
$1,800
$4,800
$1,680
$2,000
$2,000
$1,200
$1,500
$1,200
$8,000
$3,000
$2,000
$12,000
EXPENSES
$70,980
WHAT’S LEFT
$20
As you can see in the above chart, this
hardworking American family has
about $20 left at the end of the year
after covering day-to-day expenses and
doing minimal planning for retirement
and their children’s education. You
may have noticed the big hole in the
middle of their financial statement.
The absence of a long term care plan
means they are unlikely to be able
to prepare for a variety of “what if”
scenarios.
For example, what if Bob has a car
accident? What if Sue develops earlyonset Alzheimer’s like many others in
her family? What if one of the children
develops a chronic illness?
When the family receives a call from
Joe with news of Grandma’s diagnosis,
Joe assures his daughter that everything
will be okay and that he can care for
his wife. Joe had a successful career in a
small company, so the family is hopeful
that he has a long term care policy
in place for just this type of event.
Unfortunately, his company dropped
long term care insurance from their
employee benefit options.
Sue knows that she and Bob have to
make some difficult financial decisions.
While her father is in reasonable health
now, he has had health issues in the
past. In the not too distant future, he
will need help to manage Grandma’s
care.
After much discussion, Bob and Sue
decide to re-allocate about $5,000
per year from their retirement savings
into a rainy day fund to provide some
support for Grandma’s home care when
Joe can no longer do this on his own.
Sue increases her work schedule to
increase her income.
Seven years later, just as the family has
saved $35,000, Grandma is disoriented
and easily frustrated. She needs help
getting out of bed and is no longer
able to dress and bathe herself. She
cannot be left alone for fear that she
will wander. Joe’s responsibilities as a
full-time caregiver combined with his
own physical challenges have put him
in a state of depression.
Joe’s fixed income is not enough
to cover the cost of daily care for
Grandma, but he knows that soon she
will decline further and they will have
to explore nursing home care, which
is completely out of his financial reach.
He needs help, but is confused about
what to do.
the time was right. We are going to
have someone come every day for a
few hours to help you. I’m also going
to spend a few days with you and Mom
each month. We have enough saved
to do this for 18 months. And in that
time, we’ll review our options and, if
we need it, we can develop a longer
term plan.”
Joe breaks down into tears and says,
“I’m hanging in there.”
This story reflects the economic
burden that an average family faces
after a diagnosis of Alzheimer’s or any
form of dementia. The population
of more than 5.2 million Americans
suffering from Alzheimer’s is projected
to grow to 11-16 million people by
2050. And we can safely say that
approximately 75% of these families
will experience the same financial
challenges that Joe and his family are
enduring.
Sue decides it’s time to tell Joe about
the rainy day fund. “Dad, we have
been setting aside some money each
year so that we could help you when
As a New York City Chapter Board
member, I know that our vision
remains a world without Alzheimer’s.
But I also know that in the absence
One Sunday morning, Sue calls
Joe. Typically, they talk about how
Grandma is doing, but this time it’s
different. Sue hears something in Joe’s
voice. He is desperately asking for help.
She stops him mid-sentence and in a
very caring and compassionate way
asks, “Dad, how are YOU doing?”
of a cure, the best therapy is good
caregiving, which can only be
provided by helping families navigate
a complex health care system, the
challenges of a dementia diagnosis
and the extraordinary financial and
emotional burden that they face. Joe’s
story is a powerful reminder of the
obstacles so many face today and so
many more will face in the future.
John Latham
John Latham is an Insurance
partner in EY’s Financial Services
Office. John has been with EY for
over 23 years and has spent his
entire career serving the insurance
industry in a number of capacities.
For more information regarding the
financial impact of caring for someone with
Alzheimer’s, consider taking our Legal &
Financial Seminar. Upcoming dates can be
found on pages 30-31 or online at
www.alznyc.org/education.
www.alz.org/nyc
9
From a Different Prospective
The Junior Committee:
The Voice of the Next
Generation
By Ari Naamani-Goldman,
Junior Committee President
T
he Junior Committee
is a network of young
professionals who support
and engage each other and the larger
Alzheimer’s community, advocate for
legislation, and raise funds to finance
research and programs. Since 2004,
we have collectively raised more than
$2 million for the New York City
Chapter, and in 2013 we allocated
$175,000. These extraordinary
contributions are the result of
a particular grit unique to our
membership and our commitment
to ensuring the availability of vital
resources.
While the circumstances that draw
members to our work are similar,
the community our members have
built is powerfully distinct. Motivated
by our shared sense of empathy and
urgency, we develop fundraising
events, programs, and leadership
opportunities to maximize our
engagement and support.
The year 2013 saw membership
grow by 35% and our executive
committee expand to eight members.
advocacy chairs Jessica Steinberg
Albin and Marielle Mindlin Bernstein
represented our voices at the White
House; events chairs Liz Johnson
and Erin McLaughlin, professionals
in events management oversaw a
successful gala and a series of smaller
fundraisers; corporate relations
adviser Preeti Ashok Parasharami,
a marketing professional managed
corporate awareness campaign at EY
became a model of storytelling for
the committee; and secretary Maxine
Squires, whose focus on retention
helped generate key communication
developments.
Also joining us in 2013 was
committee science advisor
Andrew Teich, M.D.-Ph.D., a
neuropathologist at Columbia who
gave presentations at our meetings,
led discussions, and contributed five
major articles to help our members
better understand Alzheimer’s and
dementia.
I was delighted to see three of our
executive committee members
honored by the Chapter in 2013
for their contributions: Marielle for
her public policy efforts, Preeti for
her leadership, and Andrew for his
Alzheimer’s research.
Every one of our members imbues
the committee with dedication
and support, and it is with grateful
admiration that I share some of their
contributions here. Our stories are
a powerful means to connect with
others. Please join us and consider
sharing yours.
Get Involved
M
10
embership is free and
open to individuals who
participate in committee
activities. Members become eligible
to vote in funds allocation meetings
and elections by attending four of the
six most recent meetings, programs,
or events. Meetings are open to
prospective members and provide
excellent opportunities to learn
more, get involved, and help us plan
upcoming projects.
The committee reviews research
and program proposals annually to
decide how to spend the portion of
Chapter funds that we raise, and in
2013 we voted to allocate $20,000 to
support MedicAlert® + Alzheimer’s
Association Safe Return®, $22,000 to
support a palliative care pilot, $23,000
to fund this issue of the newsletter,
$25,000 to help finance Orthodox
Jewish education programs, and
$85,000 in special assistance grants.
Fundraising is critical to our
organization, and in relation we
participate in major athletic events—
the New York City marathons, the
Walk to End Alzheimer’s, Blondes vs.
Brunettes—as well as fitness classes,
wine receptions, happy hours and an
annual gala.
We advocate for legislative changes
at the federal and state levels by
participating in meetings and lobbying
efforts in Albany and Washington,
D.C. Our young faces remind our
representatives that Alzheimer’s affects
people of all ages.
www.alz.org/nyc
The committee hosts a support group
for young professionals affected by
Alzheimer’s and dementia. Led by
a licensed clinical social worker, the
group fosters healthy discussions and
valuable insights, and provides access to
resources.
Our outreach volunteer program,
led in partnership with a dedicated
memory loss facility, emphasizes art
engagement as a means to connect
with people who have dementia
and facilitate their self-expression.
Participants interact with residents
individually, take part in debriefing
sessions, and frequently find the
relationships they develop enormously
rewarding.
To get involved visit alznycjc.org.
Caregiver Profile: Preeti Ashok Parasharami
Preeti and her parents, Shobha and Ashok Parasharami, at her college graduation (Colgate University, Hamilton, NY; May 2000).
Matt Kudish
Senior VP of Caregiver Services
[email protected]
P
reeti Parasharami recalls seeing
her mother with dementia
symptoms as far back as 2005.
There were times, Preeti says, when
her mother seemed “off” but it was
easy in the moment to ignore or
explain things as her mother being
distracted, busy or not getting
enough sleep. Once fluent in seven
languages, Preeti’s mother began
having trouble communicating
effectively, mixing up words and
languages in ways she never had
before. Usually adept with numbers,
she struggled to remember their
home security code.
Her mother did not share with
Preeti that she had been diagnosed
with frontotemporal dementia
(FTD) until May 2006. FTD is a
progressive, degenerative disease
resulting from damage to the
frontal and temporal lobes of the
brain that manifests differently
than the symptoms of persons with
Alzheimer’s and other forms of
dementia. Common early symptoms
of FTD can include changes in
personality and behavior, language,
and muscle functions. By the time
Preeti learned of her mother’s
diagnosis, her mother’s ability to
communicate with words was
profoundly affected, as was her
ability to walk independently.
In late 2011, Preeti reached out to
the Alzheimer’s Association, NYC
Chapter to learn more about FTD
and ways she could help enhance
her mother’s quality of life while
supporting her father as her mom’s
primary caregiver. Preeti attended
our Understanding Dementia
seminar and was encouraged to
become involved with the Junior
Committee, the Chapter’s network
of young professionals.
Preeti began attending the Junior
Committee support group for young
adult caregivers in March 2012.
She found the group immensely
supportive and helpful, but wasn’t
ready to get more involved with the
Junior Committee until August.
At her first meeting she connected
with Mikhail Raybshteyn, a fellow
employee at Ernst & Young LLP
(EY), who shared with Preeti that
two EY partners, John Latham and
Ari Cohen, are members of the
NYC Chapter’s Board of Directors.
“Ready to be empowered,” as
Preeti puts it, she and Mikhail met
with John and the firm’s formal
relationship with the Chapter began
to take shape. EY established an
office-wide campaign centered
on Alzheimer’s disease awareness,
education, and community
engagement in both the 2012 and
2013 Walk to End Alzheimer’s™.
The campaign, managed internally
by Preeti and Mikhail, was
supported by employees at all levels
and was an enormous success.
For several years, Preeti regularly
made the trip from her New York
City apartment to the family’s home
on Long Island, doing her best to
balance work and her personal life.
This started to take a toll, and in
October 2012, Preeti talked with her
father about moving back home. It
www.alz.org/nyc
11
was important to her to spend more
time with her mother and she wanted
to be of greater support to her father.
In light of the firm’s involvement
with the Chapter, EY understood and
empathized with Preeti’s situation.
Likewise, the firm was incredibly
supportive as she began to plan her
move back in with her parents,
allowing her to work remotely two
days each week.
Just two weeks after Preeti moved
home, her mother was admitted to
the hospital with trouble breathing
and shortly thereafter required
a tracheostomy. The following
month she moved into a respiratory
rehabilitation facility where Preeti
believes her mother will spend
the rest of her life. Currently
on a ventilator, she is constantly
surrounded by family and love.
Preeti’s father spends 12 hours each
day by his wife’s side talking to her.
Preeti is with her mother as much
as 36 hours each week, though it is
tremendously difficult for her to see
her mom in her current condition.
A home care worker
provides both Preeti and
her father with muchneeded respite and peace
of mind, ensuring her
mother’s comfort and
care.
Despite some hiccups
along the way, they have
figured out how to make
it work as a family.
“I didn’t expect this,
but I think I’m stronger
as a result. And I wasn’t
when I first came to the
Alzheimer’s Association,
NYC Chapter,” Preeti
Diwali, Bhau Bhij: Preeti and her mother preparing for the
says. This newfound
celebration in November 1981.
strength has enabled
we choose to take steps in the right
Preeti to lend her voice
direction and the Chapter provides
to our cause in a profound way,
people with the means to do just
helping to put a younger face on
that.”
dementia, which often garners an
entirely new level of attention. Preeti
To learn more about Preeti’s
believes the Chapter’s programs are
experience, please visit:
a saving grace, not only for her but
alznycjc.org/stories/.
for all caregivers who take advantage
of them. “We get stronger when
Paid Advertisement
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www.alz.org/nyc
In their fight against Alzheimer’s, the Junior Committee has worked hard for 10 years to support the
Chapter, advocate for legislation and awareness, and raise funds to finance research and programs.
Their faces remind us that Alzheimer’s affects people of all ages. Here are some of their stories.
Lani Crescenzi, L.C .S.W., Associate Director of Care Management at
New York City’s Hebrew Home for the Aged
Member since 2011
L
ani Crescenzi was instrumental in developing the Committee’s support group to
help young professionals cope with the impact of Alzheimer’s, but Lani feels that
she herself has benefitted from the group. “Their stories and strength move me,”
she says. “I feel so rewarded every time I leave. It’s not about anything that I do; it’s about
the bonds that people form when they are able to speak openly about a topic that is alien and taboo in their social circles.”
Prominently shaping Lani’s work is her recollection of her grandmother’s struggle to care for her grandfather, who suffered
from dementia. “It becomes a lonely world,” says Lani. “My grandmother’s dedication was admirable, but it stole a part of
her life, and she aged rapidly as a result of the stress.”
Lani is acutely aware of the unique issues and needs facing caregivers in their 20’s and 30’s who are frequently caring
for parents at critical moments in their careers before they have the chance to start their own families. These caregivers,
she says, “don’t always know they need help, don’t always know they can ask for help, and often don’t feel comfortable
accepting help.” The Committee’s support group has fostered breakthroughs. “Amidst the pain of losing my mother,” says
one group member, “Lani helped me find myself. She placed emphasis on self-care, which had seemed foreign to all of us.”
The group has strongly influenced Lani’s volunteerism and fundraising, which includes active participation in the Chapter’s
Blondes vs. Brunettes football league, where support group members remain on her mind.
“If they have the strength to get up every morning and compassionately care for their loved ones,” she says, “then I can find
the strength to help fight for a cure.”
Max Markowitz, Talent Acquisition Manager at OrderGroove, Inc.
Member since 2012
A
t 21, Max Markowitz became a caregiver to his mother Betty, who was
diagnosed with early-onset Alzheimer’s at 59. “My older brother and I were
instantly forced to fast-forward our lives,” he says. “No longer were we talking
about final exams or our careers; the conversation turned to power of attorney, assistedliving facilities, and clinical trials.”
With his mother’s blessing, Max made the difficult choice to move to New York from his native city Dallas in 2009, but
he remains an active caregiver, and travels back and forth every two or three months. “Each trip is a challenge,” he says. “It
feels like I’ve lost a piece of her with each visit.”
Still, Max approaches his role as caregiver with beautiful optimism. “The past five years were filled with challenges
that seemed insurmountable,” he says, “but also emotional highs — my mom walking my brother down the aisle at his
wedding, holding her grandson for the first time, fulfilling her lifelong wish of visiting Israel, and enjoying simple pleasures
like time together or a good laugh.”
“She’s still able to find joy,” he says, “so I know she’s still in there.”
In 2011, Max attended his first Committee support group meeting, whose members, he says, “have been an emotional
outlet, a voice of reason, and a source of strength.” The experience inspired him to participate in more Committee
activities, including Outreach, and to raise funds on the Chapter’s behalf. Max was the top Committee team fundraiser at
the 2013 Walk to End Alzheimer’s, where he was joined by co-workers and friends.
He credits his engagement to the Committee. “The support I’ve received has helped me keep a positive attitude and come
to a healthy level of acceptance,” he says. “It has fostered my passion to join the fight and to offer my voice to the cause.”
www.alz.org/nyc
13
Olivia Lam Cherundolo, Senior Director at Union Bank
Member since 2013
I
n 2012, Olivia mailed over 100 fundraising appeal notes with self-addressed stamped
envelopes. She was blown away by the responses. Friends and family not only made
personal contributions but a few also got their companies to match their donations.
Many of them sent personal notes about their connections to the disease and the impact
of Olivia’s message, as well as words of encouragement. “When I began the process, I didn’t expect any responses,” she says,
“and the fact that I got so many gives me hope in the kindness of humanity and in our ability to make a difference.”
Melissa Dudra, Specialist in Product Management at Alliance Bernstein
Member since 2012
M
elissa lost her Grammy Grinkis after a five-year struggle with dementia, and
her Grandpa Dudra four months later. A high school football coach, one of the
last conversations he and Melissa had was about her upcoming participation in
Blondes vs. Brunettes, which she joined to honor her Grammy and raise awareness about
Alzheimer’s.
“Naturally, Grandpa pulled out a notebook and started coaching,” Melissa says, “giving pointers from his hospital bed to
help my game before tryouts.” Unfortunately, he passed away before the season started, but both he and Grammy were with
Melissa in spirit on game day in 2012 and 2013, as they are whenever Melissa advocates. “They are my inspiration,” she
says.
Most rewarding to her are the committee’s funds allocation meetings. “It’s so great to have a say in allocating money I’m
directly and indirectly connected to,” she adds. “To learn about the successful programs that the Chapter offers and the upand-coming programs that need help getting launched—and to feel that I have a voice and vote in funding groundbreaking
initiatives—is priceless.”
Isaac Brody, C.E.O., Socialike
Member since 2010
F
2010.
ormer Committee treasurer Isaac Brody missed the 2013 masquerade gala — his
wife was giving birth. Their newborn Charlie is named for his great-grandfather,
whose memory Isaac has honored by loyally participating on the Committee since
Isaac’s involvement is instinctive. “It’s just something I feel inside,” he says. “I love being a part of it, and I always feel so
good when I’m there. It’s very easy to donate money, but when you donate time, it’s really something special.” Junior
Committee Outreach has been a particularly resonant experience for Isaac, his wife, and friends of theirs who have joined
them. The art engagement program takes place at a nursing home dedicated to memory loss and pairs volunteers with
residents who have dementia.
“The first time I went, I thought it was going to be very scary,” he says. “But it’s so awesome. It really makes you a better,
more enlightened, and smarter person. You’re talking about real issues when you leave that place.”
Isaac’s zeal is palpable at Committee meetings, where his skills as a social media entrepreneur are always present. “I have
a couple of END ALZ T-shirts, and I love wearing them,” he says. “It sends a message and starts a conversation. That is
something I will always do. To me, it says, I’m on the Alzheimer’s team. I love being part of that team.”
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www.alz.org/nyc
Christopher Adams, Compensation Analyst at NASDAQ OMX
Member since 2009
C
hristopher Adams lost his father to early onset Alzheimer’s 12 years ago, and has
found in the Committee the means to take action. “My inherent reaction is not
to wallow in self-pity,” he says. “Do something about it.”
Chris recognizes that time has afforded him a sharpened approach. “I can look at this
in a businesslike and pragmatic way,” he says, “because I’m not confronted with it on
a daily basis.” Still, he places high value on retrospection at Committee meetings, which balance strategy, education, and
introductions for new members who are often sharing their stories for the first time. “The format,” he says, “allows for
inspiration.”
That momentum has encouraged Chris to turn personal milestones into fundraisers and develop opportunities for
colleagues to join him. In 2013, he established the NASDAQ OMX team for the Walk to End Alzheimer’s. Chris is also
a veteran of the Committee’s Outreach volunteer program, which emphasizes art engagement as a means to connect with
people who have dementia and facilitate their self-expression.
“Outreach keeps it fresh in our minds who we’re doing this for and why we’re doing it,” he says. In a beautiful tribute to his
Jocelyn Levine, Chase Private Equity Professional
Member since 2011
A
lzheimer’s disease has long been an anonymous killer in Jocelyn’s family, claiming
the minds and lives of several relatives without ever being called by name. For
years, it was written off as old age, nondescript dementia, or simply craziness.
Then, about five years ago, her grandmother was formally diagnosed with Alzheimer’s.
She moved into Jocelyn’s parents’ home, where comforting her, moving her, and even
dressing her quickly became a team effort.
After moving to New York, Jocelyn became distanced from her grandmother’s care and a longed for another way to
contribute. She was excited to see Chapter CEO Lou-Ellen Barkan featured in her firm’s speaker series, and to learn about
the many programs and initiatives supported by the Chapter. That same night, Jocelyn signed up online to attend the next
Junior Committee meeting.
For Jocelyn, the greatest thing about the Committee is that it offers a breadth of opportunities. As a participant in the 2013
Advocacy Forum in Washington, D.C., Jocelyn was able to hear from leading experts about the latest trends in Alzheimer’s
research, diagnostics, and treatment. She learned about the organization’s legislative priorities and personally met with
elected representatives on the Hill to encourage them to take meaningful action.
After the Forum, Jocelyn felt charged with the responsibility to share the knowledge she gained with anyone and everyone,
and empowered to take a more active role in the fight against Alzheimer’s. As she and her family know all too well, it is easy
for those in the middle of the battle to become discouraged. The resounding message from experts throughout the field is
that despite tremendous progress, we still have so much to learn about the disease and the brain.
Still, Jocelyn is encouraged and exhilarated by the prospect of earlier diagnosis, more effective treatments, and perhaps even
a cure within the next few decades. She continues to look for opportunities — personally and professionally — to serve the
cause. “Through the combined efforts of millions throughout the world, including those right here in New York,” she says,
“we can bring greater awareness to the disease, greater resources to those affected, and ultimately greater comfort to all. I am
planting the seed for better life and better care for future generations.”
Read more Committee member stories at alznycjc.org/stories.
www.alz.org/nyc
15
Development Report
Carol Berne
Senior Vice President of Development,
Director of Leadership Giving
[email protected]
Dear Friends,
D
uring a time when many
nonprofits are still feeling
the pinch of the economic
downturn, we have been fortunate
to attract donor support to sustain
and grow our programs for people
with dementia and their caregivers.
This is a testament to the expertise
of our staff, quality of our programs
and importance of what we do for so
many in need. We thank the many
donors who have bestowed us with
their trust and financial support.
Some of the new grants have allowed
us to pioneer new approaches to
dementia care; others have helped to
ensure the continuation of our core
programming. We are extremely
gratified by the $348,000 grant from
the Stavros Niarchos Foundation to
expand our programs and services
to Brooklyn and Queens over the
next two years. We were one of
only 10 nonprofits worldwide to
receive funding from this global
foundation in their 2013 fall cycle
under the International Health
and Medicine program. With this
funding, we will be able to establish
a strong and ongoing presence of
direct service in these important
communities, reaching those affected
by Alzheimer’s directly where they
live.
A first-time grant from The PARC
Foundation of $70,000 closed
the budget gap for this phase of
our innovative palliative care
pilot project, helping us to move
forward in creating a paradigm
shift in the way care is provided
in nursing homes for persons with
late stage dementia. Our goal
remains consistent in ensuring that
The Alzheimer’s Association, New York
City Chapter meets the Better Business
Bureau Wise Giving Alliance Standards
for Charity Accountability.
The NYC Chapter is a tax-exempt organization
under Section 501(c)(3) of the Internal Revenue
Code (Tax ID number 13-3277408) and your gifts
are tax deductible to the full extent of the law.
16
www.alz.org/nyc
persons with late stage dementia,
regardless of the setting, have
access to palliative care. The Helen
Hoffritz Charitable Trust increased
its commitment with a new $90,000
grant over two years for continued
support of our Special Assistance
Fund, earmarked especially for
medical needs. This special fund
makes one-time relatively small
grants that can make all the
difference in improving the quality
of life for an overwhelmed caregiver
and for the person with dementia.
Jarvie Commonweal Services,
which helped to launch our Chinese
Outreach Program back in 20082009, awarded a new $20,000 grant
to help deepen our relationship
within the Chinese-speaking
community. And the Bank of
America Charitable Gift Fund –
General Fund, Bank of America,
N.A., Trustee awarded a first-time
grant of $15,000 to help integrate
SMART board technology into our
training and education programs for
caregivers. This invaluable teaching
tool will be particularly important
for our 50-hour Dementia Care
Training Program and our Family
Caregiver Workshops.
These donations represent just a
sampling of the many gifts we were
proud to have received before the
end of 2013. In the next issue I will
continue to focus on some of these
new and major donors. Please know
that all gifts, regardless of size, are
important to us and are crucial
to sustaining and growing our
programs to meet community need.
In closing, I wish to thank the over
800 donors who have supported our
year-end campaign. With another
month to go we have already raised
over $410,00, a 23% increase over
2012. We anticipate meeting, and
exceeding, our $500,000 goal.
Know Your Charity
The following organizations ARE NOT afﬁliated
with the Alzheimer’s Association:
American Health Assistance Foundation
Alzheimer’s Foundation of America (AFA)
Long Island Alzheimer’s Foundation (LIAF)
Staten Island Alzheimer’s Foundation (SIAF)
Alzheimer’s Disease Resource Center (ADRC)
Ways to Give
Giving by Check
Please make checks payable to the
Alzheimer’s Association, New York City
Chapter. For your convenience, a selfaddressed postage paid envelope has been
provided in this newsletter.
Online/Credit Card
Visit www.alz.org/nyc and click on Donate
or call 646-744-2908 or 2921. We accept
MasterCard, Visa and American Express.
Appreciated Securities
Gifts such as stocks or bonds may offer
substantial tax advantages. Full fair-market
value deduction is allowed provided the
security has been held more than one
year (long-term capital gain property);
otherwise, the deduction is limited to the
donor’s adjusted tax basis.
Bequests
By remembering the Alzheimer’s
Association, New York City Chapter
in your will, you can have a significant
impact on improving the quality of care
for those affected by Alzheimer’s disease.
Your bequest may have estate tax planning
benefits as well. The following is sample
bequest language for discussion with your
attorney:
I, _____________(first and last name,
city, state, zip), give, devise and bequeath to
the Alzheimer’s Association, New York City
Chapter, with offices located at 360 Lexington
Avenue, 4th Floor, New York, New York
10017, (insert written amount of gift, percentage
of the estate, or residuary of estate, or description
of property) to be used for (insert “its unrestricted
use” or name of NYC Chapter program or
research program.)
Life Insurance and Retirement Plans
The Alzheimer’s Association, New York
City Chapter can be named a beneficiary of
your retirement plan or insurance policy.
Tribute Gifts
Tribute gifts provide a special opportunity
to honor the memory of a family member,
friend or colleague, or to recognize an
individual or a life occasion.
Corporate Giving
Payroll deductions, matching gifts, and
event sponsorships are ways to support the
Chapter.
Please note that gifts and bequests made by
NYC donors are shared between the NYC
Chapter and the National Alzheimer’s
Association unless the donor specifically
requests that the gift be restricted for
research or for a New York City Chapter
program.
Please contact Carol Berne, Senior Vice
President of Development, Director of
Leadership Giving, at 646-744-2905 or
[email protected] if you would like
additional information.
Naming Opportunities
Dedications
J
oan Faust (left) presents Chapter CEO, Lou-Ellen
Barkan, with a generous contribution in memory of
Joan’s husband, Stanley Faust. The family’s donation
will be used to dedicate a Memory Chair on the 3rd Floor,
and also a Family Caregiver Workshop, in honor of Stanley
Faust.
The donation represents gifts from the Faust family and
includes The Gruber Foundation, Joan Faust, Alex and
Sheryl Gruber, Jason Katz, Robert Faust, Harmon & Dee
Zacune, Jennifer Morris, Lori Williamson, Peppi Elona,
and Julie Jacobson.
B
oard Co-Chair, Jeffrey N. Jones (back, right), and
his mother, Regina Jones (front, left), celebrate
the dedication of the Aloysius J. and Marie B.
Streb Early Stage Community Room that Jeff named in
honor of his grandparents. They are joined by Chapter
CEO, Lou-Ellen Barkan; Executive VP and Director
of Programs and Services, Jed Levine; and Director
(retired) of Early Stage Services Paulette Michaud.
Memory Chair Naming Opportunity
P
lease consider dedicating a Memory Chair
in our new program space as a special
tribute to someone you love. For $5,000
you can honor and commemorate a loved one
with Alzheimer’s disease or show appreciation to
an extraordinary caregiver by claiming a personal
space in the heart of the Chapter’s program center.
These personal gifts not only create a comfortable
and warm atmosphere for program participants,
but support the Chapter’s ongoing and future
programs in areas such as training and education,
support groups, care consultation, and early stage
services.
For more information, please contact Crissy
Vicendese at 646-744-2927 or visit:
www.alznyc.org/memorychair
Paid
www.alz.org/nyc
17
Support Groups
Junior Committee Support Group
by Alexis Cibrano, Junior Committee Member
T
he Junior Committee’s support group
provides young caregivers with a safe space
to make their needs known, to practice selfcare, and to connect with a network of people who
relate to their unique set of challenges.
The group is a testament to the physically,
emotionally, and financially destructive ripple effect
that Alzheimer’s causes, and I have been taken
aback by the large number of young professionals
who have reached out in need of support.
The Alzheimer’s Association, NYC Chapter
holds 120 support groups in all five
boroughs.
Contact our Support Group Manager,
Wendy Panken, LCSW, at 646-744-2917
or [email protected] for the most upto-date information and to discuss your
situation.
For many members, the group is the impetus for
social action. They convert their pain into passion,
become ambassadors, and participate in countless
committee and Chapter initiatives. They work
bravely to eliminate the stigma associated with
Alzheimer’s.
“The Junior Committee support group has
empowered me,” says one member. “It has given
me the tools to cope and the strength to step up and
make a difference.”
For more information on the JC support group,
visit alznycjc.org/support.
Alexis Cibrano is a licensed social worker in private
practice. In addition to her role as facilitator of the Junior
Committee’s support group, Alexis is a brunette player in
the Chapter’s Blondes vs. Brunette football league.
SAVE THE DATE
The Alzheimer’s Association, New York City Chapter invites
you to the Charles Evans Annual Lecture on the Art and
Science of Caregiving
Who Am I Now?
The Existential Dilemma
of Caregiving
Monday, May 5, 2014
The Times Center
242 West 41st Street (between 7th & 8th Avenues),
New York City
RSVP by April 28, 2014
For more information, contact
Crissy Vicendese at 646-744-2927 or
www.alznyc.org/CaregivingLecture
18
www.alz.org/nyc
This Event is Free of Charge
Chapter Events
Masked ‘Til Midnight
T
he Junior Committee hosted
their first annual Masked
‘Til Midnight Gala at the
Upper East Side’s historic Harold
Pratt House on Friday, October
25th. Special guests included Dascha
Polanco, Vicky Jeudy and Selenis
Leyva of the hit Netflix show
“Orange Is the New Black”. Junior
Committee members and their
guests spent the evening exploring
the mansion; bidding on auction
items; and enjoying cocktails,
canapes and confections provided by
Remy Martin, Butterfield Catering,
Tito’s Handmade Vodka, Bronx
Brewery, Don Julio, Rioja Wine,
Magnolia Bakery, Pasticceria Rocco,
and Francois Payard Patisserie; and
dancing the night away with DJ
Miles.
Thanks to the dedication of Gala
Chair Liz Johnson; planning
committee members Vicki Bran,
Taryn Cronise, Kevin Dong, Melissa
Dudra, Lexi Fischer, Ari NaamaniGoldman, Natalie Knox, Julianne
Michelle, Laura Riley, Cassie Sklarz,
and Lauren Skonieczny; our main
event sponsor Remy Martin; and all
our guests; the masquerade raised
over $45,000 to fund research,
programs and services benefiting
New York City’s Alzheimer’s
community.
www.alz.org/nyc
19
Public Policy
The Importance of Federal Funding for Alzheimer’s Disease
by Andrew Teich, M.D.-Ph.D.
Junior Committee Science Adviser
T
here has never been a better
time to focus one’s career on
Alzheimer’s disease research.
Decades of hard work are finally
paying off, and there are many
new exciting leads that have given
the field a much-needed boost of
enthusiasm. For these reasons, when
I finished my clinical training at
Columbia University I decided to
turn my focus to Alzheimer’s disease.
In addition, my grandfather passed
away from Alzheimer’s disease, so
there is also a personal reason for my
interest.
However, research takes money,
and today there isn’t a lot of money
available in Washington, D.C., I
myself have had some difficulty
getting funding to start my own
laboratory, so the funding crisis
in Washington, D.C. has directly
affected my career. Many of my ideas
on how to investigate Alzheimer’s
disease are currently in limbo
until I can get more funding. The
Alzheimer’s Association has awarded
me a New Investigator Award, and
this money has been instrumental
in allowing me to pursue my most
promising leads.
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Although the Alzheimer’s
Association grants really are lifesaving for researchers such as myself,
the federal government must
continue to supply the backbone of
funding for the Alzheimer’s field.
This is because only the federal
government can provide the number
of large grants that are necessary for
researchers like myself to fully build
and maintain a laboratory. Current
federal funding for Alzheimer’s
disease research is an inadequate
$500 million per year, which is
supposed to cover all Alzheimer’s
disease research for the entire nation.
Furthermore, in an era of budget
cuts, the overall trend is for funding
to go down, not up.
Alzheimer’s disease is the sixth
leading cause of death in the United
States, and one in three seniors dies
with Alzheimer’s disease or a related
dementia. The cost to our healthcare
system is tremendous and the solution
to this problem is clear. Medical
research directly benefits patients.
Through medical research, we have
made progress on AIDS, cancer, and
a variety of other diseases. We now
have the tools to make progress on
Alzheimer’s disease, too. What this
nation needs is a commitment to
making Alzheimer’s disease research
a top priority.
The commitment is certainly there
in the American public. Every person
I talk to, from every walk of life,
agrees immediately that Alzheimer’s
disease should be a federal priority.
What needs to happen now is for
our elected representatives to hear
that this is a priority. Unless we tell
them, they won’t hear it. One of the
most poignant aspects of Alzheimer’s
disease is that many of the patients
can’t really advocate for themselves.
The disease robs people of their
mental faculties, in a way that
doesn’t happen with cancer or many
other diseases. So despite their vast
numbers, many Alzheimer’s patients
can’t make it to the town halls of
this country with their story. This
story needs to be brought by their
advocates, their families, and their
friends. Please join me in reaching
out to Congress and making it clear
that we want progress in Alzheimer’s
disease research. With your help, we
can get there.
Andrew Teich, M.D.-Ph.D., is an Assistant
Professor at Columbia University in the
Department of Pathology and Cell Biology,
where he is leading a research effort to identify
new therapeutic targets for Alzheimer’s
disease. Dr. Teich also serves as a clinical
neuropathologist, and teaches both medical
students and residents.
Crisis for Caregivers
Crisis for Caregivers: Alzheimer’s in New York City
O
n Sunday, December 15th, The Alzheimer’s Association, NYC
Chapter and the Office of Manhattan Borough President, Scott
Stringer, presented “Crisis for Caregivers: Alzheimer’s Disease
in NYC”. The report summarizes the results of a caregiver survey and
confirms the extraordinary social, economic and emotional burden
that family caregivers face. We look forward to working with the new
administration to put together a citywide plan for Alzheimer’s disease and
related dementias. This report is the beginning of preparing our roadmap
for the future, sending a message of hope for New Yorkers who need help.
The report lays out a series of recommendations that, if implemented, will
put New York City on par with the 42 states and District of Columbia
(including New York State) that have already recognized these challenges
and developed or are developing comprehensive plans to address
Alzheimer’s disease within their communities. Important points and
recommendations from the report include:
• 40% of those who answered the survey said they spend 40 hours or
more per week providing care to a family member or friend with
Alzheimer’s.
• A majority of respondents have encountered barriers to accessing
services including high priced care, a lack of available services, or
services that don’t meet their needs.
• Create an interdisciplinary task force to oversee the creation of a comprehensive citywide Alzheimer’s strategy.
• Expand and promote “one-stop” centers for information and referrals for people with Alzheimer’s and their
caregivers.
• Enhance the training requirements for health care providers including home health aides.
• Invest in public education campaigns focused on recognizing the early signs of Alzheimer’s disease.
• Create an Alzheimer’s unit within the Department of Health and Mental Hygiene to gather data about NYC’s
Alzheimer’s population.
• Expand Medicaid home care service options in New York State to better accommodate the needs of people with
Alzheimer’s disease.
• Expand funding for caregiver support services and programs that keep people with Alzheimer’s disease in
community settings as long as possible.
To read the full report, please visit www.alznyc.org/crisisforcaregivers.
The Crisis for Caregivers Report and related press conference
resulted in coverage across all NYC media outlets including:
•
•
•
•
•
•
•
•
•
•
The Daily News
New York Post
NY1
NBC New York
ABC Eyewitness News
WCBS 880
WPIX 11W
Epoch Times
Sing Tao Daily
The World Journal
From Left: Caregivers Marcy Brownson, Sharon Corso,
DonnaMarie Arrigo, Keith Amparado and President
and CEO, Lou-Ellen Barkan, speaking during the press
conference with then Manhattan Borough President Scott
Stringer on December 15.
www.alz.org/nyc
21
Dear Helpline
Dear Helpline,
I am in my late 20’s and my mom was recently diagnosed with Alzheimer’s disease.
I moved back in with my parents to help my dad care for my mother and I feel like
I’ve entered a completely different world. Most of my friends are graduating from
college or getting engaged, they do not understand what I am going through and I
cannot talk to them about this. How do I get through this?
- Sam
Stephanie Aragon
Manager, Helpline
[email protected]
Dear Sam,
Y
ou and your friends may be
on different paths but rest
assured the path you’re on
is not a road less traveled. Today it
is more common than ever before
for younger adults to be involved in
caring for a parent with dementia.
More people are being diagnosed at
earlier ages.
Some people, like you, feel alone
in their new role as caregiver.
I encourage you to join one of
the Chapter’s support groups for
younger adult children. Meeting
with people your age will make
you feel less alone. There is nothing
like talking with a group of people
who truly understand where you are
coming from. In these groups you
will be able to discuss what you are
experiencing in your new role and
share the feelings you cannot share
with your friends.
Caregivers of all ages find support
groups invaluable. Group members
support each member’s efforts to
carve out personal time and to
continue living life. As a result, in
22
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these groups younger caregivers
have supported each other to be in
romantic relationships, start new jobs,
make travel plans, get married, and
have children. Helping each other
through this very difficult disease has,
when all was said and done, changed
their lives for the better.
It is also crucial you and your parents
settle their legal affairs. Has your
mother completed a Durable Power
of Attorney, a Health Care Proxy and
a Living Will? The New York City
Chapter offers a Legal and Financial
Seminar, free of charge, in which
an elder law attorney discusses the
aforementioned documents and other
important considerations. Addressing
legal and financial issues as early as
possible will help prevent difficult
situations in the future. You can find
the dates and times of upcoming
seminars in our calendar, which starts
on page 30 of this newsletter.
Be sure to also familiarize yourself
with the insurance coverage your
mother has. Does she have long term
care insurance? If so, speak with one
of the representatives of the insurance
company to discuss services for which
your mother may be eligible. Is your
mother eligible for Medicare? Do
her income and assets qualify for
Medicaid? Look at all of your care
options and have conversations about
what care your mother may need. We
have Care Consultants at the Chapter
with whom you can meet to discuss
these issues in greater detail.
Most importantly, take care of
yourself, carve out the time to be
with friends and to do activities you
enjoy. Remember, Sam, taking care
of yourself fully — emotionally,
physically, mentally, and spiritually
— means you will be better able to
care for your parents through this
journey.
24-hour helpline
800-272-3900
[email protected]
Managed
Long Term
Care
President’s
Message
Mandatory Managed Long Term Care Plans for Nursing Home
Residents on Medicaid
Jed A. Levine
Executive VP, Director of Programs
& Services
[email protected]
I
n possibly the most significant
development in nursing home
care since the passage of the
federal Nursing Home Reform
Law in 1987, New York is
transforming the way frail elderly
and disabled individuals access
nursing homes. The state is going
to begin its plan to mandate that
everyone on Medicaid who needs
nursing home care access this care
through a private Managed Long
Term Care (MLTC) insurance
plan. Originally slated to begin in
January, this plan is scheduled to
start in March 2014 in New York
City and September 2014 in the
rest of the state.
This law will affect everyone who
accesses nursing home care through
Medicaid (the overwhelming
majority of nursing home
residents). Roll out of the transition
will take at least two years and will
not affect people who are already
in nursing homes, whose care will
continue to be paid via traditional
Medicaid “fee for service.”
Under fee for service, Medicaid
pays nursing homes directly for
a resident’s care, and individuals
can access any nursing home that
accepts Medicaid – over 600 in
New York State and approximately
160 in NYC. Under mandatory
MLTC, people will have to join
a private insurance plan and those
who need nursing home care will
have to access it through a plan.
Rather than choosing to go to any
nursing home, individuals will be
given a choice of nursing homes
by their plan. Given the enormous
ramifications of this change, our
colleagues at the Long Term Care
Community Coalition (LTCCC)
undertook a study to identify
the present state of MLTC plans’
relationships (i.e., contracting for
services) with nursing homes and
assess how this may be useful for
consumers in identifying potential
strengths and weaknesses as the
state mandates the inclusion of
residential care in MLTC.
In relation, LTCCC’s report,
“Mandatory Managed Care in
New York State Nursing Homes”
provides useful resources, including
a list of the MLTC plans and the
nursing homes in their networks.
It also discusses the current state of
access and quality of nursing homes
as New York embarks on this
game-changing shift to mandatory
managed care for nursing home
residents. These data are presented
in easy to use charts providing
information on important issues
such as MLTC nursing home
network adequacy and quality for
every New York county.
The report includes rankings
of MLTC plans, from best to
worst, on various criteria. The
study found that under current
MLTC–nursing home contracting
patterns, “A whopping two-thirds
of the MLTC facilities are clearly
understaffed based on their own,
unaudited reports to NY State.
Sixty four (64) nursing homes
currently in MLTC across the state
have recently been the subject
of published reports of serious
abuse or neglect. These homes
reveal the kinds of situations that
unsuspecting individuals will be
sent to by their MLTC plan unless
safeguards are put in place.”
This law will affect
everyone who
accesses nursing
home care through
Medicaid.
To that end, the report presents
recommendations for New York
State on how to both protect
individuals and families who will
rely on nursing home care in the
years to come and ensure that the
enormous public funding spent on
this care will be used appropriately.
Currently, there are no quality
requirements whatsoever for
MLTC plans regarding the homes
to which they send their members.
Any facility with a license is
deemed sufficient by the state for
MLTC contracting requirements.
The full report can be accessed at
www.nursinghome411.org.
You can also call our 24-hour
Helpline or speak to a Care
Consultant at 800-272-3900 if you
have specific questions or concerns.
Acknowledgment: Thanks to Richard
Mollot and his colleagues at LTCCC
for their permission to adapt this
information for our use.
www.alz.org/nyc
23
Latino Outreach
Roberto Reyes Jr.
Manager, Latino Outreach
[email protected]
O
n October 15, 2013, the
Alzheimer’s Association,
New York City Chapter
collaborated with Lincoln Hospital
and hosted Alzheimer’s Disease in
the Latino Community in the Bronx
as part of the Take Care New York
initiative. Dr. José A. Luchsinger, a
lead researcher in Alzheimer’s disease
from Columbia University, was the
keynote speaker. Dr. Luchsinger
discussed the prevalence and risk
factors of Alzheimer’s disease within
the Latino community. Studies
show Latinos have a one in five
higher propensity to suffer from
Alzheimer’s disease than their white
and African-American counterparts.
Dr. Luchsinger dispelled myths about
the disease and answered questions
related to his research.
and neighboring states attended.
The conference had a panel of
geriatricians, researchers, community
leaders, and agencies dedicated to
improving care and the quality of life
for people with dementia, and their
caregivers.
On November 14, 2013, the
Alzheimer’s Association, New York
City Chapter as part of B.L.A.N.
(Brooklyn Local Aging Network),
put on an all-day conference where
Jed Levine, Executive Vice President,
Director of Programs & Services, was
the keynote speaker. The conference
was designed to reach people in the
borough of Brooklyn, however,
people from all five boroughs
Chinese Outreach
Fai Lin (Fanny) Lau
Manager, Chinese Outreach
[email protected]
T
he concept of Alzheimer’s
disease is a difficult one for
the Chinese community
to accept, especially the idea that
Alzheimer’s can happen to adults
under the age of 65. There is a
growing number of people diagnosed
with Alzheimer’s disease in their
40’s, 50’s and early 60’s, which we
call younger-onset Alzheimer’s.
This contradicts the accepted
understanding of Alzheimer’s by the
Chinese population. The Chinese
community still believes that
24
www.alz.org/nyc
Alzheimer’s disease only happens in
the elderly population. The Chinese
translation of the term Alzheimer’s
disease is “Senior Senile Disease”.
The name is still unchanged today.
During a presentation in the
community, I had an opportunity
to meet an audience member who
was diagnosed with Alzheimer’s
disease at the age of 59. He collects
Social Security Disability Insurance
because he cannot continue to work.
He takes medication for Alzheimer’s
disease. However, he does not
believe that he has Alzheimer’s
disease. His sisters brought him to
the presentation because they wanted
me to tell him that younger-onset
Alzheimer’s disease is becoming more
common. Now, we have more than
200,000 people with younger-onset
Alzheimer’s disease in the United
States. After our conversation, he
better understood the disease and that
he was not alone and could seek help
as needed.
It takes time for Chinese people
to adapt to a new perspective on
Alzheimer’s disease. I believe that
more educational workshops,
presentations, media campaigns,
health fairs and one-to-one care
consultations are needed to help the
Chinese population change their
outlook on Alzheimer’s disease.
African American Outreach
Paula Rice
Manager, African American Outreach
[email protected]
A
s a result of outreach efforts
at senior centers, faith based
institutions and health fairs,
more and more African American
residents are recognizing the value
of educational workshops and
seminars offered by the New York
City Chapter. They are learning that
educating oneself about this disease
makes the caregiver journey less
problematic. This knowledge allows
caregivers to anticipate symptoms of
the disease stages so that a strategy
of care can be implemented. Being
knowledgeable about the pathology
of Alzheimer’s disease removes
the “crisis mode” in which many
caregivers often find themselves.
A member of an African American
support group explained, “The more
I learn about this disease, the easier
it is to care for my husband. Before
I attended the Family Caregiver
Workshop I would wake my
husband every morning, help him
dress, then tell him he had to take
his medication. He would become
combative and argumentive, insisting
nothing was wrong with him and
he didn’t need medication. After
the workshop I learned another
approach. I wouldn’t mention the
medication; instead I would just
prepare his breakfast and place his
medication next to his plate and
would join him at the table. To
my surprise, he would just take the
pills along with his meal. I couldn’t
believe how easy it was. For almost
a year we had begun our day with
a frustrating argument, but now we
begin our day on a more positive
note. It’s less stressful for me and
we can spend more quality time
together. I’m so grateful for the
workshop, it’s changed my life.”
This caregiver’s experience created
a domino effect in the support
group, encouraging other members
to take advantage of the valuable
resources offered by the Alzheimer’s
Association. As more testimonies
similar to this woman’s surface in
the community, a greater awareness
develops and families learn that help
and support is just a phone call away.
Call our 24-hour Helpline at 800272-3900 to learn more about how
we can assist you.
Do You Have A VOICE ? JOIN THE CAUSE!
B
W
ECOME AN ADVOCATE & SPEAK OUT!
Help us let elected representatives know just how important
an issue Alzheimer’s disease is by becoming an advocate today!
•
HAT IS AN ADVOCATE?
As an advocate you will:
• Generate action from our elected officials
• Stay on top of policy and legislative issues through
alerts and updates
• Help elevate Alzheimer’s awareness
For more information, please contact Hillary Stuchin at [email protected]
or 646.744.2902 or visit us online visit www.alznyc.org/advocate.
www.alz.org/nyc
25
Corporate Relations
Corporate Initiatives in the Workplace
A
lzheimer’s disease is a rapidly growing epidemic that cannot be ignored,
particularly in the workplace, where an increasing number of employees
are balancing career and caregiving responsibilities. And with other
workplace lifecycle discussions on child care, personal health and retirement,
Alzheimer’s and elder care largely go unmentioned.
Why Engaging Employees Matters:
•65% of employed caregivers for
people with Alzheimer’s reported
having to go in to work late, leave
early or take time off due to
caregiving demands
80%
65%
40%
20%
20%
0%
Had to go in late,
leave early or
take time off 1
Vice President, Director of
Operations
[email protected]
•Alzheimer’s disease impacts 6.6
million employees who provide
elder care1
100%
60%
Nick Emerson
Had to take a
leave of
absence1
13%
11%
Had to go from
working full to
part time1
Had to quit
work1
•Many caregivers of people with
Alzheimer’s reported making
major changes to their work
schedules because of caregiving
responsibilities
1 2012 Alzheimer’s disease Facts and Figures. (2012) Alzheimer’s
Association National Office; Chicago, IL; Alzheimer’s Association
Advocacy: Washington, D.C. http://www.alz.org/facts.
A special THANK YOU to some of the organizations in 2013 that showed that IT DOES MATTER:
Mikhail Raybshteyn and Preeti Parasharami, who are active on the Junior Committee,
spearheaded an #ENDALZ campaign that focused on community engagement, awareness
and education. The EY - Building a Better Working World team also raised more than
$51,000 and was honored for being the Top Fundraising Team at the Manhattan Walk.
First a participant in the annual Walk to End Alzheimer’s, then an avid rider in the
Five Boro Bike Tour, for over half a decade, Mike Schnitzer has raised funds and taken
advantage of Bloomberg’s generous matching gift program to raise over $80,000!
Marcia Kessler and Louis Impellizeri, co-chairs of Credit Suisse’s U.S. Family Network
Eldercare Initiative, through Credit Suisse’s Employee Volunteer Program, amassed a dozen
employees to participate with us for our Walk to End Alzheimer’s to qualify for a $3,000
grant!
Interested in getting your company involved in a ....?
Lunch & Learn | Casual for a Cause Day | Marketing & Awareness Campaign | Employee Giving Campaign | Athletic
Event (NYC Half Marathon, NYC Marathon, NYC Triathlon, Five Boro Bike Tour) | Forget-Me-Not Gala Sponsorship |
Walk to End Alzheimer’s Team or Sponsorship | Health Fair | Private, Cultivation Event | Idea of Your Own?
Please email me at [email protected].
26
www.alz.org/nyc
Athletes to End Alzheimer’s
Athletes to End Alzheimer’s Raises a Record
$500,000 for the 2013 New York City Marathon
Nick Emerson
Vice President, Director of
Operations
[email protected]
O
n Sunday, November 3rd,
I awoke to temperatures
slightly above freezing
with blustery winds and even a little
rain, ready to join and run with
the 129-person Athletes to End
Alzheimer’s team. At 5:30am, we
gathered for what would be our first
team memory of the day, taking a
group photo while sporting purple
glow necklaces before heading down
to the Start Village in Staten Island.
From there, we would embark
upon the 2013 ING New York
City Marathon, an epic 26.2 mile
journey throughout the five boroughs
of New York City. If you’ve never
run the world-renown New York
City Marathon, then words cannot
describe the feeling of starting this
epic journey by running over the
Verrazano Bridge, filled with 50,000
anxious runners, steps reverberating
all around on the traffic-free bridge
followed by the myriad of spectatorfilled neighborhoods of Brooklyn.
Or running through Queens
into Manhattan over the serene,
meditative silence of the Queensboro
Bridge, leading to the deafening roar
of the crowd on 1st Avenue.
The support and love of the crowds
of spectators throughout the day
could only compare to running
into an Olympic stadium or onto
a football field for a championship
game. Whether it was in the Bronx,
where the crowds spilled over each
other on the streets, or traversing
back into Manhattan, greeted by
the soul and sounds of a gospel choir
in Harlem, or those final miles of
wall-to-wall spectators in Central
Park, each person along the route felt
like your own personal cheerleader
as they yelled out, “Go Team
Alzheimer’s!”
And finally, after the agony of the
those last few uphill miles, we
were able to embrace the sheer joy
of crossing the finish line and the
absolute and indelible elation of
sharing this experience with our
friends, teammates, family and all of
New York City. On that one day, no
matter where any of us were from,
or how pretty or ugly our races
were, everyone gathered together to
celebrate each and every one of us,
the marathoners.
And celebrate we did.
Our team of runners, ranging in
age from 22 to 66 years old, raised
over $500,000, flying in from
Oregon, California, Hong Kong,
Florida, Michigan, Louisiana and
Pennsylvania to join the many
more living in the New York City
metro area. Our Athletes to End
Alzheimer’s marathon team had been
raising awareness and training for six
months culminating on this historic
day. For over 40 runners, this day
had been two years in the making
because they came back to run with
us again, undeterred by last year’s
last-minute cancellation. Many lives
have been touched by this disease
but hopefully many more are being
helped by the amazing support of this
incredible team.
Alzheimer’s does not end with a
finish line, a medal or a happily
ever after, but with the help of our
amazing athletes, we are working to
change that and to honor the passion,
dedication and strength displayed by
people with Alzheimer’s and their
caregivers every day.
To learn more about the NYC
Marathon, or any of our upcoming
events including the NYC Half
Marathon, the TD Five Boro
Bike Tour, Blondes vs. Brunettes
powderpuff football game, NYC
Triathlon, Ironman or to
participate in an athletic event of
your own, feel free to visit us at:
www.alznyc.org/athletes
www.alz.org/nyc
27
50-hour Dementia Care Training for Professionals
Congratulations, Graduates!
April 2013
Pamela Burnham
Suecia N. Buzziz
Jeff Constantakis
Carmen G. Delgado
Charmaine Melita Ellis
Shirley Evans
Mary Fukuo
Gaydon Lofton-Burton
Bette Goodman
Cheryl Griffith
Ehab Ismail
Kerry Longdon
Sheriffa McDoom
Gloria Maraga
Intesar Museitef
Milagros Pena
V. Gail M. Pettinger
Carlene Primus
Pamela Ramdeen
Nilka Sessions
Cheryl Toussaint
Janice Felix Williams
September 2013
Patricia Barnwell
Sharon Criales
Esmine Dehaney Brown
Carol Griffith-Allen
Shauna Magalia Hall
Enose Jolivert
Mpoelola Kuponiyi
Amalia A. Lewis
Milagros Manon-Og
Carol Pompey
June Rover
Denson Scotland
Leasa Stevenson
Noliyanda Williams
Charito Wise
Congratulations to the recent graduates of our 50-hour Dementia Care Training for Professionals!
The 50-hour training is a seven-week course available free of charge to aides.
This training prepares direct care staff in all aspects of Alzheimer’s and dementia care.
This popular training has made a significant difference in the lives of persons with dementia, their family members,
and those who are paid to care for them.
Topics include:
• Understanding the disease process
• Enhancing communication
• Significan of self care
• Person centered care
• Implementing home safety
• Managing behavior challenges
• Creating meaningful activities
• Successful family interactions
• Encouraging cultural awareness
• Identifying elder abuse
For more information or to register, please contact our 24-hour Helpline at 800-272-3900 or visit www.alz.org/nyc.
28
New York Consortium for
Alzheimer’s Research and Education
The New York Consortium for Alzheimer’s Research and Education (n.y.c.a.r.e.) is the
joint effort of the Alzheimer’s Association, New York City Chapter and the Education
and Information Cores of the Alzheimer’s Centers — Columbia University, College of
Physicians and Surgeons; Mount Sinai Medical Center; and New York University School
of Medicine — funded by the National Institute on Aging.
The Genetics of Alzheimer’s Disease: Putting it into Perspective
I
f you are part of the younger
generation of New Yorkers with
firsthand experience of Alzheimer’s
disease in a family member, you
may wonder about your own risk of
dementia. When questioning whether
there is a genetic predisposition for
AD in your family, there are three
important things to keep in mind.
Alzheimer’s disease is a multifactorial
condition: Alzheimer’s disease has been
associated with both environmental
and genetic causes. AD occurs
when a protein called beta-amyloid
builds up in the brain. Beta-amyloid
overproduction causes plaques to
form, which interfere with the normal
functioning of the brain cells to the
point where the cells eventually die.
Age remains the biggest risk factor
for AD. Additionally, cardiovascular
diseases, such as high blood pressure,
heart disease, stroke, diabetes and high
cholesterol are believed to increase
a person’s risk for AD. Having a
family history of AD can increase a
person’s risk above that of the general
population, however, the only genes
definitively linked to AD have been
identified in the early-onset forms of
the disease.
The established genetic forms of AD
are rare: early-onset Alzheimer’s disease
is a rare, genetic form of AD that is
inherited in an autosomal dominant
manner. It comprises only 1% of all
cases of AD and it affects individuals as
early as 40-50 years of age, although it
can occur as early as the third decade
of life. Mutations in three different
genes have been found to cause
EOAD: presenilin 1 and 2 and amyloid
precursor protein. All three of these
genes are involved in the production
and regulation of beta-amyloid in
the brain. These genes have not been
linked to late-onset Alzheimer’s disease
(LOAD), which is the more common
form seen in one in eight adults over
65 years old in the U.S.
EOAD is suspected when multiple
individuals in a family are affected,
and when the age of onset is below
60. Genetic testing may be considered
when EOAD is suspected in a family.
However, there are some important
things to note: 1.) Testing is best
done on the individual who is having
symptoms of AD; 2.) Testing is for
information only – at this time, there
is no treatment that would become
available should someone test positive
for one of the three early onset genes;
3.) Knowledge of one’s genetic status
can have psychological and emotional
effects, especially in individuals who
are pre-symptomatic. Pre- and posttest genetic counseling is recommended
for individuals considering genetic
testing in order to fully discuss and
understand the implications.
Research involving late-onset AD is
promising: Researchers have not yet
identified a gene or set of genes that
definitively cause the more common
late-onset form of AD. However,
there is one gene, apolipoprotein-E
(ApoE), that is considered to be a risk
factor for AD when a certain form
of it (ApoE-4) is inherited. ApoE-4
makes an individual more susceptible
to developing AD compared to
individuals that don’t carry this specific
form of the gene, but having ApoE-4
does not mean someone will definitely
develop AD. This gene impacts the
age of onset of AD depending upon
how many copies are inherited:
If one copy is inherited, the risk
increases three-fold; if two copies are
inherited, the risk appears to increase
almost 10-fold. The degree of risk
varies among ethnic groups. Testing
for APOE is commercially available
and physicians can order this test;
however, since carrying ApoE4 is not a
definitive cause of AD, testing must be
approached with caution. The position
of the Alzheimer’s Association and
the American Academy of Neurology
is that ApoE testing has little clinical
utility at the present time and is not
generally recommended for presymptomatic individuals.
Current research has identified over a
dozen candidate genes that have been
associated with late-onset AD. Most
recently, a genome-wide association
study (GWAS) was performed in
over 70,000 individuals with and
without AD. GWAS is an analysis
that examines thousands of small
changes across different regions of
the human genome to see if there are
genetic variations that occur more
frequently among individuals with a
particular disease versus those without
the disease. The most recent GWAS
reported that there were 11 different
genes significantly associated with
LOAD. Further studies are warranted
to determine exactly how these genes
influence the pathways leading to
AD. In addition to GWAS findings,
researchers are currently collaborating
on a national level to sequence DNA
from individuals from large families
with AD. This will be the largest
undertaking in the genetics of AD
and will establish a library of sequence
information that can then be analyzed
to see if there are specific regions of the
human genome linked to AD.
In addition to trying to identify genes
that may be causing AD, other research
efforts are focused on finding genes
that may modify the onset of AD or
genes that may protect against AD.
And still other studies are aiming
to isolate environmental factors that
may play a role in contributing to
the underlying genetic causes of the
disease. Similar to what has been done
with cancer treatments, where therapies
targeted to specific disease-causing
pathways provide higher efficacy and
lower toxicity, the ultimate goal of AD
research is to uncover the underlying
mechanisms of AD so that effective
therapeutic options may become
available to patients and families living
with AD.
www.alz.org/nyc
29
FEBRUARY
3 Monday
Legal & Financial Seminar
Time: 12:00 – 1:30 p.m.
Borough: Manhattan
6 Thursday
Understanding Dementia: What You Need
to Know and Where to Go
Time: 12:30 – 2:00 p.m.
Borough: Queens
Note: This meeting is for family caregivers only.
Medicaid Home Care Seminar: A Practical
Guide to the System
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
Note: Prior attendance at a Legal &
Financial Seminar is required.
10 Monday
Educational Meeting
Time: 6:00 – 8:00 p.m.
Borough: Manhattan
Topic: Driving and Dementia: Balancing
Safety and Independence
Speaker: Caregiver Panel + Moderator Nancy Lee Hendley, Dementia Care Trainer
11 Tuesday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
12 Wednesday
to Know and Where to Go - IN SPANISH
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
14 Friday
Time: 12:00 – 1:30 p.m.
Borough: Manhattan
18 Tuesday
Placing Your Relative in a Nursing Home
Time:
5:30 – 7:00 p.m.
Borough: Manhattan
MARCH 19 Wednesday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
Time: 1:00 – 2:30 p.m.
Borough: Brooklyn
27 Thursday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
Registration is REQUIRED.
All meetings are free of charge.
RSVP online for Monday Educational
Meetings at www.alz.org/nyc
Please call our 24-hour Helpline
at 800-272-3900 to register
for our other meetings.
3 Monday
Time:
12:00 – 1:30 p.m.
Borough: Manhattan
6 Thursday
Time: 12:30 – 2:00 p.m.
Borough: Queens
Guide to the System
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
10 Monday
Educational Meeting
Time: 6:00 – 8:00 p.m.
Borough: Manhattan
Topic:
Behavior is Communication
Speaker: Alejandro Berti, Dementia Care Trainer
11 Tuesday
We hope you like our new
calendar design. You may
notice that specific locations
of upcoming meetings are no
longer listed. This allows us
to include information about
even more upcoming meetings
and events. You will receive
location information during your
registration call.
We wish to thank the following
for their generous donation of
space for the meetings:
Time: 12:00 – 1:30 p.m.
Borough: Manhattan
CAPE at the Samuel Field
YM-YWHA
Riverstone Senior Life Services
Heights & Hills
Presbyterian Senior Services
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
12 Wednesday
to Know and Where to Go -for Healthcare
and Social Service Professionals
Note: This meeting is not for family caregivers
14 Friday
Time: 12:00 – 1:30 p.m.
Borough: Manhattan
Time: 11:00am – 12:30 p.m.
Borough: Bronx
Time: 1:00 – 2:30 p.m.
Borough: Bronx
30
www.alz.org/nyc
MARCH
APRIL
15 Saturday
3 Thursday
16 Wednesday
Time:
1:30 – 3:30 p.m.
Borough: Manhattan
Film: Please call for film titles
Time: 12:30 – 2:00 p.m.
Borough: Queens
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
16 Sunday
Guide to the System
Movies & More: A Film and Discussion
Series
New York City Half Marathon - Athletes to
End Alzheimer’s
Time:
7:00am – 1:00pm
Borough: Manhattan
17 Monday
Time:
5:30 – 7:00 p.m.
Borough: Manhattan
18 Tuesday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
19 Wednesday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
Time: 6:00 – 7:30 p.m.
Borough: Brooklyn
27 Thursday
Time:
5:30 – 7:00 p.m.
Borough: Manhattan
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
7 Monday
Time:
12:00 – 1:30 p.m.
Borough: Manhattan
8 Tuesday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
11 Friday
Time: 12:00 – 1:30 p.m.
Borough: Manhattan
Time: 1:00 – 2:30 p.m.
Borough: Brooklyn
Time: 5:30 – 7:00 p.m.
Borough: Upper Manhattan
21 Monday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
23 Wednesday
Time: 5:30 – 7:00 p.m.
Borough: Upper Manhattan
24 Thursday
12 Saturday
Time:
5:30 – 7:00 p.m.
Borough: Manhattan
to Know and Where to Go - IN CHINESE
Time: 11:00 a.m. – 12:30 p.m.
Borough: Queens (Flushing)
14 Monday
28 Monday
Legal & Financial Seminar - IN SPANISH
Time:
5:30 – 7:00 p.m.
Borough: Manhattan
Educational Meeting
Connect2Culture is the
Chapter’s cultural arts program
which, in partnership with
major NYC cultural institutions,
provides meaningful activities
for caregivers and persons with
dementia.
Visit a museum and explore art,
participate in our We Sing! singa-long program, or dance with our
ballroom partner Rhythm Break
Cares at a social tea dance.
Time: 6:00 – 8:00 p.m.
Borough: Manhattan
Topic: Film “Bathing Without A Battle”
Speaker: Come watch this educational film
and speak with Home Health Aides for helpful
tips.
15 Tuesday
Time: 5:30 – 7:00 p.m.
Borough: Manhattan
www.alznyc.org/c2c
www.alz.org/nyc
31
NON-PROFIT ORG.
U.S. POSTAGE
PAID
360 Lexington Avenue, 4th Floor
New York, NY 10017
CHANGE SERVICE REQUESTED
www.alz.org/nyc
646 744 2900
800 272 3900 — 24-hour Helpline
St. Joseph, MI
PERMIT No. 244
This Spring We’re Tackling Alzheimer’s
Sign up for Blondes vs. Brunettes® NYC 2014 today.
www.bvbnyc.org

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