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6 Cover Story by Mimi Fahs
59Nuestra Nueva Revista En Español
New York City Chapter
Volume 33 v Summer 2009
the Elephant
in the
Room
Calling All Runners! ▪ ▪ ▪ ▪ ▪ NYC Chapter designated an official charity of the
Volume 33 • Summer 2009
2009 ING New York City Marathon ▪ ▪ ▪ ▪ ▪ Not a runner? Come cheer our
team of 50+ on November 1st — running to help end Alzheimer’s!
▪ ▪ ▪ ▪ ▪ Visit www.alznyc.org for details.
in this edition
President’s Message
From the Program Director
Calendar of Events
2010 Census
Aging and Economics: Is the
Stimulus Package on Course?
From the Editor’s Desk
Jazz Benefit Concert
Early-Stage Memory Disorders Forum
Early Stage Services
MedicAlert + Safe Retun
Reflections
Joe Girardi
Dear Helpline
Caregiver Profile
Support Groups
Diversity & Outreach
Della’s Place
Dementia Care Training
Dementia Care Graduations
In Our Own Words
Public Policy Update
Legal Guidance
Education Calendar
Support Group Openings
Residential Care
Caregivers’ Corner
Next Step in Care
If It’s Not Alzheimer’s
Vascular Dementia
Alzheimer’s in the News
Chapter in the News
Volunteer Corner
Women In Action Update
Junior Committee Update
DEVELOPMENT
Ways to Give
Development Report
Cultivation Event
Meet Our Donors
Tributes
HonorGift Tribute Program /
Know Your Charity
N.Y.C.A.R.E.
Cognitive Problems Following
Anesthesia
Clinical Trials:
Columbia University Medical Center
New York University School of Medicine
Mount Sinai School of Medicine Revista En Español
ALZNYC Store
Memory Walk 2009
Memory Walk 2009 registration page
Bulletin Board
new york city chapter
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Board of Directors
Princess Yasmin Aga Khan
Honorary Chairperson
Heath B. McLendon
Chair
Jeffrey N. Jones
Vice Chair
Kenneth Reiss
Treasurer
Directors
Andrew W. Albstein
Peter A. Antonucci
Jeffrey A. Asher, Esq.
Steven E. Boxer
William M. Brachfeld
Susan J. Caccappolo, L.C.S.W.
Lou-Ellen Barkan
President &
Chief Executive Officer
Jed A. Levine
Executive Vice President
Director of Programs & Services
Della Frazier-Rios
Senior Vice President
Director of Education & Outreach
Carol Berne
Vice President, Leadership Giving
Ann Berson
Vice President
Director of Public Policy
Peggy Chu
Chief Administrative Officer
Susan Sugarman
Vice President
Director of Marketing,
Communications & Events
May L. Woei
Vice President
& Chief Financial Officer
Christopher H. Browne
Robert Butler, M.D.
Rose Dobrof, D.S.W.
Dr. Frank Field
Hon. Liz Krueger
Lisa Linden
Richard Mayeux,
M.D., M.Sc.
Norman R. Relkin,
M.D., Ph.D.
Hon. Helene E. Weinstein
Women In Action
Tami J. Schneider
Junior Committee (ex officio)
Meghann McKale
Yvette Bynoe
Maggie Marra
Linda Centeno
Sandra Martinez
Hillary M. Donohue
DaQuan McKie
Office Manager
Manager, Administration
Marketing, Communications &
Events Associate
Eugenia Dorisca
Executive Assistant
Nancy Lee Hendley
Dementia Care Trainer
Karen Holland
Development Associate
Rosemary Irving
Manager,
African-American Outreach
Christina Keller
Director of Volunteer Leadership
& Development
Matt Kudish
Director of Helpline
& Care Consultation
Fai Lin Lau
Manager, Chinese Outreach
Staff
Stephanie Aragon
Coordinator, Helpline
Asif Baksh
Webmaster
Director of Grants & Research
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Ari F. Cohen
Marilyn L. Cohen
Andrew Fenniman
Daniel G. Fish, Esq.
David Geithner
James F. Haddon
Jeffrey Halis
Jack Kamin
Sunnie Kenowsky Irving, D.V.M.
Susan V. Kayser, Esq.
Samuel F. Martini
Joanne Ronson
Richard H. Schneider
Anne McBride Schreiber
Mark A. Zurack
Executive Staff
Lydia Broer
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Leadership Council
Danielle Bruzese
Coordinator,
Education & Outreach
Newsletter Staff
Susan Sugarman
Editor
Linden, Alschuler & Kaplan,
Inc. Public Relations
Contributors
Ronald L. Glassman
Photographer
Kristin K. Levinson
Associate Director, Principal and
Major Gifts
Gregory Lin
Accounting Associate
Barbara London
Receptionist
Niurqui Mariano
MedicAlert + Safe Return
Community Outreach Associate
Helpline Associate
Development Associate
Office Assistant
Xue Mei
Staff Accountant
Paulette Michaud
Director of Early Stage Services
Wendy J. Panken
Manager, Support Groups
Alison Reynoso
Elizabeth Bravo Santiago
Manager, MedicAlert +
Safe Return
Caitlyn Smith
Outreach Associate
Lauren Tammany
Coordinator, Early Stage Services
Amy Trommer
Licet Valois V.
Manager, Latino Outreach
Julie Wang
Administrative Assistant,
Programs & Services
Meghan Washington
Marketing, Communications &
Events Associate
Alex Wong
Staff Accountant
www.alznyc.org
24-hour Helpline: 800-272-3900
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.
Dear Friends,
As the economic freefall of 2008 continues, we know that the long-term effects of this
recession will be with us — as a nation, state and city — for years to come.
The Chapter has been hit hard as reliable sources of funding have disappeared — in some
cases, overnight. Foundations confirm that we’re doing a great job, but admit they don’t have the
funds to help us right now. Similarly, as major corporations struggle, their philanthropic giving
— both individual and corporate – has crept to a halt. We are also feeling the sting as government
struggles with budget crises and deep cuts.
Sadly, unless there is a dramatic change in the marketplace, for the first time, we will not
expand services. Frankly, our overall goal — and I mean NOW, not in the mid- or long-term
— is simply to maintain the quality services we have. Even this outcome is devastating, as more
people are diagnosed with dementia every day, and demand for our services continues to grow.
We always knew that a crisis was coming — that the number of people with AD would
explode — but we anticipated being able to increase our resources over time. Instead, we are
suddenly at risk.
Like many organizations, we are scrambling to sustain ourselves, and in doing, we are striving
to sustain you. So, the question is: what are we prepared to do? And when I say we, I mean
everyone — including the many thousands of you who read this newsletter.
The Chapter has certainly benefited from your tremendous generosity during the good years.
And while lack of money is the primary pressing problem, even in hard times, if you cannot
donate, there is a role for you.
Lou-Ellen Barkan
President & CEO
[email protected]
“…together
we will
Become a volunteer. Call us to find out how you can provide assistance on a long- or shortterm basis.
create a new
Make noise. Become an advocate. Go to our Web site and learn what we’re doing in public
policy. Find out how to make your voice count.
dynamic —
Come to our events. I’m very proud that our “Forget-Me-Not” Gala, honoring Yankee skipper
Joe Girardi, was a success that will help sustain us through the coming months. But this year,
we’re offering more events than ever that will unite our community and help show the world
that attention must be paid:
July 9th — Alzheimer’s Awareness Day with the NY Mets at Citi Field
August 9th — Memory Walk 2009 with the Brooklyn Cyclones (NY Mets Class A team)
September 3rd — Alzheimer’s Awareness Day with the Staten Island Yankees
October 1st — Annual Chapter Meeting at Rockefeller University
October 25th — Memory Walk 2009 at beautiful Riverside Park
November 1st — NYC Marathon — Junior Committee Team
In my determined effort to be optimistic, I am totally confident that together we will create a
new dynamic — a new energy that will sustain us through this difficult period. I know we and
the community can emerge stronger than ever.
a new
energy that
will sustain
us through
this difficult
period.”
Dear Readers,
As I write this in early spring, the news is full of the recession, the depression, the economic
downturn and hard times. I recently returned from our National Public Policy Forum armed
with updated facts and figures that describe the devastating projection of persons who will be
affected by Alzheimer’s and related dementias — taking a terrible toll on the financial health
of our country, in addition to the enormous emotional and social costs. According to the
new report, every 70 seconds another American develops AD. And even though less than 2%
of our Chapter’s operating budget is raised through government dollars, the current scenario
is grim.
Jed A. Levine
Executive Vice-President,
Director of Programs
& Services
[email protected]
“In these
stressful times,
for all the right
reasons, the
NYC Chapter is
committed to
delivering the
same quality
support and
education
services free
of charge…”
I have just testified at what will be the first of many hearings to request funding from
the New York City Council and individual Council Members. Our message is the same
whether we are in Washington, Albany or at New York City Hall: Alzheimer’s doesn’t know
that there is a recession. There will be exponentially increasing numbers of those affected by
Alzheimer’s and related dementias. This country’s health care system will be bankrupted by
the need for care.
We know that Alzheimer’s patients do not get better. As Maria Shriver pointed out in her
eloquent and straightforward testimony in the Senate Hearing on March 25th, no one with
Alzheimer’s goes into remission, and there are no Alzheimer’s survivors. Care needs increase
with time as does the stress on the family and the community. People with Alzheimer’s and
other dementias cost Medicare, Medicaid and other payers of health and long term care three
times as much compared to enrollees who do not have dementia. And the human cost is
monumental.
Many caregivers experience high levels of stress and depression. From the 2009 Alzheimer’s
Disease Facts and Figures:
•More than 40% of the family and other unpaid caregivers of people with Alzheimer’s and
other dementia rate the emotional stress of caregiving as high or very high.
•About one-third of family caregivers of people with Alzheimer’s and other dementias have
symptoms of depression.
•One study of family care provided for people with dementia in the year before the person’s
death found that half the caregivers spent at least 46 hours a week assisting the person; 59%
felt that they were “on-duty” 24 hours a day; and many felt that caregiving in this end-oflife period was extremely stressful. The stress of caregiving was so great that 72% of the
family caregivers said they experienced relief when the person died.
More family and other unpaid caregivers of persons with Alzheimer’s and other dementias
reported that their health was not as good as non-caregivers and that caregiving made their
health worse.
And most importantly, in these economically stressed times, many family caregivers report
that they had to quit work or reduce their hours because of their caregiving responsibilities.
This results in the loss of their own health insurance as well as contributions to their social
security and employer contributed retirement accounts.
In one study almost half the family caregivers had out of pocket caregiving expenses that
were unreimbursed.
In these stressful times, for all the right reasons,
the NYC Chapter is committed to delivering
the same quality support and education services
free of charge to people with the disease, their
family members and other caregivers. We know
the enormous emotional toll when a family
member is diagnosed with AD. We understand
that in these times the need for our services is
going to increase. For the first time in my 19year tenure at the Chapter we may not be able to
expand services or add programs. Our new goal is
stability; to continue to deliver the comprehensive
range of high-quality programs and services that
we have built over the past 30 years; the 24-hour
Helpline and Web site, Care Consultation, Early
Stage Services, Support Groups, MedicAlert +
Safe Return, Education and Training for family
members, home care workers, other professionals
and paraprofessionals, outreach and education
to the diverse communities of our city, and
Emergency and Special Assistance, all supported
by an exceptional staff and a committed group
of volunteers.
Know that we are adjusting our expenses
to save every penny, and as always, to use your
dollars wisely in the service of those who need
our help.
If you are in a position to help, please give as
generously as you can, and if you need our help,
please call or e-mail us at 1-800-272-3900 or
[email protected].
Thank you.
2009
Jul 9 5th Annual Alzheimer’s Awareness Day with the NY Mets
Aug 9 Memory Walk 2009 with the Brooklyn Cyclones at
KeySpan Park
Sep 3 1st Alzheimer’s Awareness Day with the Staten Island
Yankees
Oct 1 22nd Annual Chapter Meeting
Progress in Alzheimer’s Research — Lifestyle Implications
Oct 8 Hispanic Heritage Month Celebration
Oct 22 Interfaith Ceremony of Remembrance
Oct 25 Memory Walk 2009 at Riverside Park
Nov 1 2009 ING New York City Marathon
The 2010 Census:
It’s Coming Soon,
and It’s in Your Hands
Every ten years, or decennial, as it is known, the count of the nation is
required by our constitution.
What Count The census is a count of everyone residing in the United
States: in all 50 states, the District of Columbia, Puerto Rico and the
Island Areas.
Who Everyone All residents of the United States must be counted.
This includes people of all ages, races, ethnic groups, citizens and
non-citizens.
When Every 10 years Every 10 years, and the next census occurs
in 2010. Census questionnaires will be mailed or delivered to every
household in the United States in March 2010. The questions ask you
to provide information that is accurate for your household as of April
1, 2010. The Census Bureau must count everyone and submit state
population totals to the U.S. President by December 31, 2010. The
first Census was conducted in 1790 and has been carried out every
10 years since then.
Where Everywhere in the U.S. The census counts everyone
residing in the United States: in all 50 states, the District of Columbia,
Puerto Rico and the Island Areas. People should be counted where
they live and sleep most of the year.
Why The U.S. Constitution (Article I, Section 2) mandates a headcount
of everyone residing in the United States. The population totals
determine each state’s Congressional representation. The numbers
also affect funding in your community and help inform decision
makers about how your community is changing.
How The Census Bureau will mail or deliver questionnaires to your
house in March 2010. We will mail a second form to households
that do not respond to the initial questionnaire. Households that still
do not respond will be called or visited by a Census worker. (Census
workers can be identified by a census badge and bag.)
Aging and Economics:
Is the Stimulus Package
on Course?
By Mimi Fahs
T
to address and prevent the devastating consequences of
Alzheimer’s disease (AD). People with AD, unfortunately, are
indeed costly to the economy. Many will have used up their
savings. Unpaid caregivers (family, friends, and neighbors)
often will be forced to reduce or stop work to care for AD
patients. Already today, almost 10 million unpaid caregivers
provide over 8.5 billion hours of care, valued at over $94
billion.3 The economic costs of the loss of productive
labor from the market are enormous. As the population of
older adults doubles over the coming decades, continued
economic losses may become unsustainable without better
prevention or control of the progression of AD.
As we know, policy and economics are closely linked.
In today’s economy, with the Obama administration facing
unprecedented budget deficits, it is more important than
ever to understand the economic undercurrents shaping
contemporary policy debates, and the evidence behind
these underlying economic assumptions.1 Yet too often
policy makers fall prey to negative economic myths and
stereotypes associated with aging. Therefore I want to
review four commonly held assumptions about economics
and aging that contrary to popular belief, are completely
false.
Assumption 2: Older Adults Are a Drain on the
Health Care System
he most recent national economic signals
appear to indicate a slowdown in the deepening
recession. This has led to hopeful optimism by
some economists that we are nearing a turning point;
economic growth may return as early as next year. As
a health economist with a passion for understanding the
connection between health and economic productivity, it
seems an appropriate time to review how the aging services
sector is faring, and whether we are positioning ourselves
wisely to benefit from the recovery and to contribute to
increased economic growth.
Assumption 1: Older Adults Are a Drain on the
Economy
The reality: The older (50+) population commands $2
trillion in consumer spending, an amount sure to increase
as the population grows older.2 This rising consumer
demand will stimulate many industries. These industries
include the high-tech industry, where breakthroughs in
products using technology useful to older adults, such as
robotics, will occur, as well as the more traditional “silver
industries” associated with older adult consumers such
as assisted living housing, pharmaceuticals, the banking
system, the travel industry, and long-term care insurance.
It is against this dynamic and productive economic
backdrop that we must develop a national strategic plan
The reality: The health care industry, one of the fastest
growing employment sectors in the country and fueled
by increasing demand associated with aging, will be a
powerful economic stimulus, particularly in large urban
centers, such as New York City.4 In the health care market,
as in all others, expenses to consumers provide income
to producers.5 Thus, increased expenses associated with
health care for a growing population of older adults lead
to job growth and income for health care workers. A
recent study by the Urban Institute finds health care to
be the leading employer in 20 major U.S. cities, and the
Department of Labor predicts tremendous job growth in
health care over the next several decades.6,7
But how high can health care expenditures grow
before we start depriving other sectors of the economy,
such as education or housing? The issue is not one of
absolute growth but of relative growth compared to the
economy as a whole. In fact, according to a recent study,
health care costs can increase 1% faster than real per capita
economic growth with no adverse consequences for the
next seven decades; that is, we would not have to decrease
spending in any other economic sector through 2075. A
2% differential still takes us through the next three decades
with no other spending decreases.8
Assumption 3: Preventive Medicine Is Not Cost
Effective After Age Sixty-five
The reality: Health economists have shown strikingly
cost-effective results ever since preventive medicine for
older people first began to be systematically examined 20
years ago. A recent study of the value of disease prevention
among the elderly demonstrated prevention among
the elderly could be very cost effective. For instance,
hypertension control could reduce health spending by
$890 billion over the next 25 years, while adding 75
million life years; reducing obesity back to 1980s levels
would save more than $1 trillion.9 Yet, although we have
some very intriguing clues, we actually have very little
specific information about disease preventive or lifestyle
changes that might reduce the risk for AD. Further study
is desperately needed, including the association of AD
with obesity, diabetes and vascular disease.
Assumption 4: Increased Longevity Will Cause
Large Health and Social Costs Associated
with Degenerative Disease and Disability and
Economic Decline
The reality: There is a positive association between
increasing longevity and economic growth. A recent
study of developing countries calculated a ten-year gain
in life expectancy translated into nearly one additional
percentage point of annual income growth.10 This
favorable economic finding could apply to our own urban
neighborhoods as well. It is possible to speculate that
decreasing disparities in longevity across neighborhoods
would lead to increased urban prosperity.
Economic wealth is defined by more than market value
of course; it includes social value as well. A recent study
from the University of Chicago estimated that increased
longevity between 1970 and 2000 added more than $3
trillion per year to national wealth.11 This is an enormous
hidden increase in social value that is not considered by
standard market analyses.
Moreover, older people are staying healthy longer.
New data show old-age disability rates declined for all
socioeconomic groups over the past two decades.12 These
findings provide evidence in support of the “compression
of morbidity” hypothesis.13 This hypothesis suggests, as
people live longer, age-related morbidity begins later in
life; that is, morbidity is “compressed” into the later stages
of life.
Yet, without a cure for AD, the benefits of increased
longevity will be severely reduced. Today, the risk of
Alzheimer’s doubles every five years after age 65, with
40% of adults aged 85 years suffering from AD.14 If
current trends are allowed to continue, by 2050 the U.S.
population with AD will triple, to over 13 million, with
serious consequences for the economic growth potential
associated with increased longevity.
Economic Growth: Bridging the Divide between
Public Health and Aging Services
We as a society have a lot to gain by supporting healthy
aging in our communities. With the fastest growing
segment of the population being seniors above the age
of 85, it is essential for our future economic growth to
increase federal support now of research to prevent AD
and federal, state, and local support for communitybased services to help maintain our older seniors living at
home and in their neighborhoods. Public support of frail
seniors will have an economic “multiplier effect.” Today,
businesses lose over $60 billion annually because family
members have to reduce their hours or quit their jobs to
become caregivers. These business losses will soar without
public investment in aging research and services.
As the baby boom generation becomes the aging
boom generation, we have to counter prevailing economic
assumptions, and focus evidence-based policy on achieving
the economic potential of successful aging. The federal
stimulus package includes line item allocations for homeand community-based services (HCBS) programs, but
the package does not contain additional money for Social
Services Block Grants or for low-income energy assistance,
helpful to seniors aging in place. The package does have
$100 million for senior nutrition programs and $500
million for federal health care workforce development
programs. In addition, the federal stimulus package adds
$87 billion to Medicaid funding for states. This is the
equivalent of $1 billion per quarter for New York State
Medicaid programs, helping to avoid cuts in chronic care
and long term care services. But we must consider whether
the complexity and lack of coordination of the current
12 Medicaid-funded long term care programs, combined
with the lack of an effective connection to the rest of the
health care system, is optimal. Efficient and effective aging
service systems, linked to public health systems, are not yet
on Obama’s navigational chart; a coherent aging services
policy has yet to emerge at the national level.
Unfortunately, at the local level, aging services are
suffering devastating budget cuts. In the past year, the
NYC Department for the Aging (DFTA) endured $16.6
million in funding reductions. These include $888,000 for
caregiver support services and the complete elimination
of the Social Adult Day Program. As Bobbie Sackman,
Policy Director for the Council for Senior Center Services,
reports:15
“Looking ahead, Mayor Bloomberg’s Preliminary
Budget for FY2010, which begins on July 1st, would
reduce DFTA’s budget by another $21 million. It would
reduce funding for senior centers by another $5 million,
Case Management by $1.1 million and Home Delivered
Meals by $1.4 million. Elder Abuse Prevention services
would be eliminated entirely. $5.1 million of these cuts,
just announced last month, has yet to be identified.
Finally, the Mayor’s Preliminary Budget does not
include budgetary allocations for programs originally
funded by the City Council. This could mean another
$22.4 million in program cuts, including $4.5 million
and $3 million to address the rising costs of food and
transportation services, $2.4 million for the Geriatric
Mental Health program, $1.5 million for Healthy
Aging, $1 million for Naturally Occurring Retirement
Communities (NORCs) and other funding.
In total, these $60 million in cumulative budget
reductions represent more than one-third of DFTA’s total
City Tax Levy funding. Since more than 90% of DFTA’s
budget goes directly into contracts for senior centers,
case management, meals and other programs offered by
community-based agencies, these cuts have an immediate
and devastating impact on services provided to seniors.”
The best approach to economic recovery is to counter
the prevailing myths of the day, and focus research and
evidence-based policy on improving the health and social
outcomes of older adults and their families. Providers
of aging services have the potential to extend public
health initiatives to many different population groups of
community-based seniors and their families. Exploring
opportunities for collaborations with the public health
and long term care sectors, currently receiving stimulus
funding, may yield positive results. For example, social
adult day programs, senior centers, naturally occurring
retirement communities (NORCs) and caregiver respite
programs could increase the effectiveness of communitybased public health programs in chronic disease prevention
and management through targeted outreach and inreach.
In conclusion, restoring vital community-based aging
services, as well as developing new models for coordinated
public health, long term care, and aging services programs,
are essential and compelling priorities we must address in
order to improve quality of life and to sustain economic
growth in our aging society.
References
1. Fahs MC,Viladrich A, Parikh N. Immigrants and Urban Aging:Towards A
Policy Framework, in Interdisciplinary Urban Health Research And Practice.
Eds. Freudenberg N, Klitzman S, Saegert S. In press. Jossey-Bass 2009.
2. Moody, H. R. Silver industries and the new aging enterprise. Generations,
28 (2004): 75–78.
3. Alzheimer’s Association. 2009 Alzheimer’s Disease Facts and Figures.
Alzheimer’s & Dementia, Volume 5, Issue
4. Lowenstein, R.The health sector’s role in NewYork’s regional economy.
Current Issues in Economics and Finance, 1 (1995): 1–6.
5. Reinhardt, U. E. Does the aging of the population really drive the
demand for health care? Health Aff, 22 (2003): 27–39.
6. Rogers, D., Toder, E., and Jones, L. Economic Consequences of an
Aging Population (Occasional paper no. 6. The Retirement Project).
Washington, D.C.: The Urban Institute, 2000.
7. U.S. Department of Labor, Bureau of Labor Statistics (BLS). Tomorrow’s
jobs. Available at http://www.bls.gov/oco/oco2003.htm. 2007.
8. Chernew, M. E., Hirth, R. A., and Cutler, D. M. Increased spending
on health care: How much can the United States afford? Health Aff, 22
(2003): 15–25.
9. Goldman, D. P., Cutler, D. M., Shang, B., and Joyce, G. F. The value
of elderly disease prevention. Forum Health Econ Policy 9 (Biomedical
Research and the Economy), Article 1. Available at http://www.
bepress.com/fhep/biomedical_research/1. Published 2006. Accessed
June 23, 2008.
10. Bloom, D. E., and Canning, D.The health and wealth of nations. Science,
287 (2000): 1207–1209.
11. Murphy, K. M, and Topel, R. H. The value of health and longevity. J
Polit Econ, 114 (2006): 871–904.
12. Schoni, R. F., Freedman,V.A., and Martin, L. G.Why is late-life disability
declining? Milbank Q, 86 (2008): 47–89.
13. Manton, K. G., Stallard, E., and Corder, L. Changes in morbidity and
chronic disability in the U.S. elderly population: Evidence from the
1982, 1984, and 1989 National Long Term Care Surveys. J Gerontol B
Psychol Sci Soc Sci, 50 (1995): S194–204.
14. Hebert LE; Scherr PA; Bienias JL; Bennett DA; Evans DA. Alzheimer
Disease in the US Population: Prevalence Estimates Using the 2000
Census. Arch Neurol. 2003;60:1119-1122.
15. Sackman, B. A Graying NYC Threatened by Cuts and Consolidations.
New York Nonprofit Press. April 28, 2009.
Marianne (Mimi) C. Fahs, PhD, MPH, is the Rose
Dobrof Co-Director and Research Director of the Brookdale Center for Healthy Aging and Longevity of Hunter
College and Professor of Urban Public Health at Hunter
College. She has over 25 years experience in health
services research, health economics, and policy analysis, focusing on older adults and vulnerable populations.
Dr. Fahs pioneered the first cost-effectiveness analysis
of a preventive screening program among older women, contributing to
Congressional passage of Medicare’s inaugural preventive screening
benefit for cervical cancer. Dr. Fahs has an established national reputation, and has served on several national advisory committees, including
the National Advisory Panel on Payment for Preventive Health Services
for the Elderly under Medicare for the Office of Technology Assessment,
United States Congress. Dr. Fahs holds joint appointments as Professor of
Economics and Professor of Public Health with the doctoral faculty of the
Graduate Center of the City University of New York.
The Chapter enjoyed a busy and productive Spring!
Our 2nd “For Those We Love” Jazz Benefit Concert on
April 22nd was a sizzling success (see page 10), and
on May 8th, Lisa Genova, New York Times best-selling
author of Still Alice, was the keynote speaker at our
9th Annual Early-Stage Forum (see page 12). Each
year we recognize volunteers who give of their time
and talents — and this year was no exception. On
May 14th, staff and volunteers gathered at MoMA for a
fascinating tour of the painting and sculpture galleries
followed by a lovely reception (more to follow in our
fall newsletter).
As we head into Summer, stay tuned for research
updates from the Alzheimer’s Association
International Conference on Alzheimer’s Disease
(ICAD), this year from July 11–16 in Vienna, Austria.
Thousands of researchers from all corners of the
globe will share research breakthroughs. Visit
www.alznyc.org for the latest reports. You will also
find information on how you can help in the science
of Alzheimer’s by participating in a research study
— whether you have a memory impairment or not
— there is a study for you.
Join us for Memory Walk 2009! For the 1st time in
our history, we will have 2 Walks — on August 9th
with the Brooklyn Cyclones at KeySpan Park in Coney
Island and on October 25th for our annual Fall Walk
at Riverside Park. Register for one or both and help
us spread the word. Memory Walk is our city-wide
public awareness and fundraising event. Proceeds
from Memory Walk will help us continue to provide
programs and services without charge to all those in
our NYC community affected by Alzheimer’s disease
and other dementias. Register, start a team and
donate at www.alznyc.org/memorywalk.
Another Chapter 1st is our Alzheimer’s
Awareness Night with the Staten Island
Yankees on Thursday, September 3rd at
7:00 pm. Tickets will include an all-youcan-eat ballpark dinner, a baseball cap,
games for the kids, and a post-game
fireworks show. Order your tickets at
www.alznyc.org.
If you would like to support the Chapter by hosting
an event or have an idea for a future event, please
contact me at 646-744-2906 or [email protected].
As always, if you have any newsletter comments or
ideas, please send them to my attention by e-mail or
at the address on the back cover.
Susan
Please join us on
Thursday, October 1, 2009
for our 22nd Annual Chapter Meeting
“Progress in Alzheimer’s Research —
Lifestyle Implications”
The Rockefeller University
Caspary Auditorium
York Avenue at East 66th Street, New York City
To RSVP or for more information, please contact
Karen Holland at 646-744-2926 or [email protected].
“For Those We Love” Jazz Benefit Concert
The 2nd “For Those We Love” jazz
concert was produced by Louise
Rogers and Peter Eldridge to
benefit the Alzheimer’s Association,
NYC Chapter and featured the
Louise Rogers/Rick Strong Duo,
Jane Monheit, Paquito D’Rivera
and New York Voices on April 22nd
at Merkin Concert Hall at Kaufman
Center. The concert was hosted by
Bill Ritter, WABC-TV’s “Eyewitness
News” Anchor.
Contemporary jazz greats
delivered soaring performances
at the 2nd jazz concert “For Those
We Love,” which benefited the
Chapter. The unique fundraiser was
the brainchild of jazz artists Peter
Eldridge and Louise Rogers, whose
mothers were both diagnosed with
Alzheimer’s disease. Also on the
bill were Paquito D’Rivera, Jane
Monheit and the New York Voices.
Bill Ritter
Paquito D’Rivera
New York Voices
Long-time Alzheimer’s advocate
and Chapter supporter,WABC-TV
news anchor Bill Ritter, served as
the evening’s host. Mr. Ritter said,
“Like many here tonight, I have a
personal tie to Alzheimer’s — my father died from this disease 11 years
ago. I’m telling all of you in this room who don’t have a connection
to the disease now that you will at some point in your lives, because the
numbers are growing. We need a bailout for Alzheimer’s.”
After a warm-hearted welcome, Ms. Rogers wowed the crowd with
her pure, agile voice and vocal gymnastics. She sang new and old favorites
backed by her husband, bassist Rick Strong, and fabulous band, Andy Biskin
and Jerry Korman, then shared remembrances about her experience as a
young teen seeing her mother diagnosed with the disease. She dedicated
her performance of “I Thought About You” to her mother.
The evening evolved with a knockout performance from the muchanticipated Jane Monheit, who captured every heart in the crowd with her
first number, a stripped-down duet of the beloved Joni Mitchell song “A
Case of You,” accompanied by Mr. Eldridge on piano and voice.
10
t
Jane Monhei
Grammy Award-winning
jazz legend Paquito D’Rivera,
whose father died of
Alzheimer’s, heated things
up with his sultry saxophone
style. He thrilled the crowd
with soulful improvisations,
adding a brilliant layer to
Ms. Monheit’s bossa nova
rendition, and brought the
house down with his solo
set. His passion invigorated
the crowd, who thanked him
with thunderous applause
after each solo.
Mr. Eldridge, Lauren
Kinhan, Kim Nazarian and
Darmon Meader of the New
York Voices, the Grammy Award-winning vocal group, wove intricate
harmonies over a range of rhythms and dynamics. Their tight and
highly skilled performance was a visual and auditory delight, which
was fascinating and deeply touching at the same time. Another high
point of the evening were the combined forces of Paquito D’Rivera
with the New York Voices.
Lauren Kinhan and Darmon Meader of New York Voices, Louise Rogers, Peter Eldridge,
Lou-Ellen Barkan, Jane Monheit, Paquito D’Rivera, Kim Nazarian of New York Voices and Jay Ashby
Louise Rogers
Not to be overlooked, we were fortunate to have with us the
“instrumental” genius of saxophonist Darmon Meader, trombonist/
percussionist Jay Ashby, Alon Yavni on piano, Paul Nowinski on bass
and Ben Wittmen on drums.
Peter eldridge and his father
Chapter President and CEO Lou-Ellen Barkan closed the
program with gracious thanks to the artists, audience members, and
Mr. Ritter for their highly-entertaining and priceless support.
A “Meet the Artists” reception followed the benefit performance with
an array of food and drink. All of the artists attended, which gave concert
patrons an opportunity to mingle, take photos and give their thanks to the
performers for donating their time and talent in support of the Alzheimer’s
Association.
Many thanks to our benefit concert sponsors — Broadway Baker,
Starbucks Coffee, Park Avenue Liquor Shop, Delmonico Gourmet,
WFAN Sports Radio 66, El Diario and The Queens Ledger.
— Erin Farrell and Susan Sugarman
Go to www.alznyc.org/gallery to view our 2009 Jazz Concert photo album.
11
Taking Control: Knowing How, Knowing When —
L
earning that you or a loved one has Alzheimer’s
disease or dementia can be one of the most
devastating, frightening and confusing times a
person can experience. A million questions run through
your mind. What do we do now? How long will I be able
to work? What kind of medicine should my wife take?
My husband always took care of the finances, how will I
manage? What kind of support is available? How do I tell
my friends? How can we possibly cope with this?
For nine years, the NYC Chapter has sponsored an
important day-long event — The Early-Stage Memory
Disorders Forum — to help thousands of people through
this very scenario. The first of its kind in the nation,
our Early-Stage Forum provides resources and support
for people in the early stage of Alzheimer’s and other
dementias, their families, loved ones and caregivers,
as well as for social workers, doctors, nurses and other
professional service providers. It has become a model for
other Chapters across the nation.
The all-day Forum, held at The Roosevelt Hotel in
Manhattan, provided workshops that examined a wide
range of issues of importance including communication
challenges, legal and financial planning, the importance of
ongoing mental and physical stimulation support groups
and education as well as the latest on treatment options
and research. Workshops for individuals in the early stage,
their caregivers and family members focused on taking an
active role in decision making regarding legal and financial
affairs, learning how to deal with the shifts in relationships,
and how to locate important resources such as support
groups and education. Workshops for professionals focused
on issues such as helping families resolve the decision of
how and when to stop driving and how to deal with the
emotional impact as a professional in the field.
During the morning session, the audience was
welcomed by Board Co-Chair Jeffrey Jones followed by
Chapter President and CEO Lou-Ellen Barkan. About
300 attendees were inspired by the courage and eloquence
of Carl Eden, a member of the Chapter’s MemoryWorks
program, who has been diagnosed with Mild Cognitive
Impairment. In a moving speech about his personal
journey through memory loss, Eden spoke of this group
as a source of inspiration. “I always leave this group and
go on with my private life, feeling more complete as a
12
Keynote Speaker Lisa Genova, Paulette Michaud and Jed Levine
Welcome from Board
Co-Chair Jeffrey Jones
Greetings from Carl Eden
Lisa Genova read excerpts from best-seller
“Still Alice” during her keynote address
9th Annual Early-Stage Memory Disorders Forum
person than before I walked in. But, human contact is
the most important gain. There is no worse company for
memory loss than isolation.”
Lauren Tammany with 2009 Forum Planning Committee Member
Jason Marder and wife Karin
Keynote speaker, neuroscientist and author Lisa
Genova, PhD, provided a compelling fictionalized
glimpse into a woman’s sudden descent into early-stage
Alzheimer’s. Reading excerpts from her New York Times
best-selling debut novel, Still Alice, this Harvard educated
scientist drove home an important message for many in
the audience: it’s important to make the most of every
neuron you’ve got, and that it’s possible to really LIVE
with Alzheimer’s.
Ms. Barkan singled out Chapter staff for their
dedication and professionalism. In particular, Ms. Barkan
noted the contributions of Paulette Michaud, Director of
the Chapter’s Early Stage Services, who Barkan coined
“our own American Idol.”
We wish to thank the following 2009 Forum Sponsors:
Luncheon Sponsor — Elan Pharmaceuticals, Inc.; Gold
Sponsor — Ortho-McNeil Neurologics, Inc.; Bronze
Sponsors — SeniorBridge and The 80th Street Residence.
Due to the generosity of the MetLife Foundation, we were
once again able to offer program materials and simultaneous
translation of the morning program in Spanish.
— Kim Esp
Carol Berne, 2009 Luncheon Sponsor Elan Pharmaceutical’s Stephen Judd,
Jed Levine and Della Frazier-Rios
Anderson Torres, PhD, LCSW-R,
presents morning workshop in Spanish
Please visit www.alznyc.org/store to order your copy of “Still Alice.” To
view the Early Stage Forum photo album go to www.alznyc.org/gallery.
José A. Luchsinger, MD,
MPH, presents afternoon
workshop in Spanish
Elizabeth Fine, LCSW presents workshop with
Robert “Ti” Randall, early-stage person and
care partner Ann Burgunder
13
What About My Dignity?
O
ne of the most popular topics of discussion among our early-stage clients is about
the treatment they receive from their physicians and other health care professionals.
Although some are pleased with their medical care, there are many more who have
become quite disillusioned with their doctors and the quality of care that they provide. In fact,
the most common complaint we hear is about the insensitivity of doctors who repeatedly ignore
their early-stage patients and talk mainly to their caregivers, even though they are sitting side by
side. As one client commented,“It feels like I don’t even exist. I guess they think we’re not capable
of understanding what they’re talking about because we have this diagnosis of dementia.”
What makes this issue even more surprising is that the majority of the medical professionals
our early-stage clients are referring to are those who actually specialize in dementia care. Is
it really too much to expect that these professionals should be attuned to the importance of
maintaining their early-stage patients’ dignity?
Paulette Michaud
Director, Early Stage Services
[email protected]
In recognition of this growing problem, the Alzheimer’s Association has compiled “Principles
for a Dignified Diagnosis,” the first statement of its kind written by people with early dementia
which contains their insights on how to improve the experience of getting a diagnosis. These
principles include the following:
• Talk directly to me, the person with dementia.
I am the person with the disease, and though
my loved ones will also be affected, I am the
person who needs to know first.
• Tell the truth. Even if you don’t have all the
answers, be honest about what you do know
and why you believe it to be so.
• Test early. Helping me get an accurate
diagnosis as soon as possible gives me
more time to cope and live my life to the
fullest potential, and to get information about
appropriate clinical trials.
• Take my concerns seriously, regardless of
my age. Age may be the biggest risk factor
for Alzheimer’s but Alzheimer’s is not a normal part of aging. Don’t discount my concerns because I am old. At the same time,
don’t forget that Alzheimer’s can also affect
people in their 40s, 50s and 60s.
• Deliver the news in plain but sensitive
language. This may be one of the most
important things I ever hear. Please use
language that I can understand and is
sensitive to how this may make me feel.
• Coordinate with other care providers. I may
be seeing more than one specialist — it is
important that you talk to my other providers
to ensure you all have the information so that
14
changes can be identified early on and that I
don’t have to repeat any tests unnecessarily.
• Explain the purpose of different tests and
what you hope to learn. Testing can be very
physically and emotionally challenging. It
would help me to know what the purpose of
the test is, how long it will take and what you
expect to learn from the process. I would also
appreciate the option of breaks during longer
tests and an opportunity to ask questions.
• Give me tools for living with this disease.
Please don’t give me my diagnosis and then
leave me alone to confront it. I need to know
what will happen to me, and I need to know
not only about medical treatment options but
also what support is available through the
Alzheimer’s Association and other resources
in my community.
• Work with me on a plan for healthy living.
Medication may help modify some of my
neurological symptoms, but I am also
interested in other recommendations for
keeping myself as healthy as possible through
diet, exercise and social engagement.
• Recognize that I am an individual and the
way I experience this disease is unique.
This disease affects each person in different
ways and at a different pace. Please be sure
continues on page 15
Safety in These Times
D
uring these tough economic times people are trying to cut costs everywhere possible.
Often times families will try to eliminate everything that does not seem essential
or a basic necessity. Taking these measures seems to be the right path for most,
especially because of the many uncertainties our nation faces. The MedicAlert® + Alzheimer’s
Association Safe Return® Program understands that during this difficult period it can be more
difficult for families to afford to pay the fee for enrollment in the program. The New York City
Chapter wants to ensure that no one is turned away because of inability to pay.
70% percent of people with Alzheimer’s disease or a related dementia will wander at some
point during their disease progression. Wandering is a dangerous behavior that can potentially
lead to death or serious injury if the person is not found within a certain amount of time.
Registering in the program is essential for people with dementia. Statistics indicate
that 99.5% of people that are reported missing and are registered in the program are found
and returned home safely versus 91% for those that are not registered. During these pressing
economic times ensuring the safety of cognitively impaired individuals is crucial. You do
not want to add more to your plate by dealing with a missing loved one. The New York
City Chapter understands that now more then ever people are holding on to every bit of
savings they have. However we do not want this to compromise the safety of the person with
dementia. We want to make sure that everyone who needs the protection of the
MASR Program is enrolled, regardless of their ability to pay. If you can not pay for
the enrollment fee please write or check scholarship in the payment section of the enrollment
form and the fee will be paid by the Chapter’s Special Assistance Fund, and by funds donated
by members of the New York City Council. Families and caregivers can simply not afford for
the person they care for not to be registered.
Niurqui Mariano
MedicAlert +
Safe Return Community
Outreach Associate
[email protected]
Please keep in mind that if you are able to pay the one-time enrollment fee of $44.95 and the
annual renewal fee of $25.00, the Chapter will be able to help more families unable to pay.
For more information about financial assistance, and assistance to all caregivers and professionals who
would like to enroll a person with dementia in the MedicAlert + Safe Return program, you may do so in one
of three ways: via telephone by calling 646-744-2918 or 2920, online at www.alznyc.org or by calling and
requesting an application be mailed to you. Enrollment forms are available in English and Spanish.
Early Stage Services continued from page 14
to couch your explanation of how this disease
may change my life with this in mind.
• Alzheimer’s is a journey, not a destination.
Treatment doesn’t end with the writing of
a prescription. Please continue to be an
advocate — not just for my medical care but
for my quality of life as I continue to live with
Alzheimer’s.
I think the time has come for all professionals who work with people who have dementia to treat them with the
dignity and respect they deserve. It may take a little longer, but it’s clear that they are entitled to nothing less!
If you have an early-stage diagnosis, or you are the caregiver for someone with early dementia, and you would like to know more about
advocacy opportunities, please contact me at 646-744-2911 or send an e-mail to [email protected].
15
Lou-Ellen Barkan interviews
Joe Girardi
LOU-ELLEN BARKAN (LEB): Joe, how did you first become
interested in our work?
Joe Girardi (JG): My father has had Alzheimer’s
for about 15 years. My wife’s grandmother, Lena, had
dementia, but she only
suffered for a couple
of years. My father’s
Alzheimer’s has lasted
for 15 or 16 years. The
progression was slow and
he was able to do a lot
for a long time because
we caught it early and
he was properly taken
care of. He was able to
enjoy life until the last
three or four years and
since then, it’s become
really difficult.
Joe Girardi
When I was in college,
my father asked me when I was getting married. I started
dating my wife, Kim, in my senior year, and after two weeks,
Dad decided we should get married because he wanted
grandkids. Now, my oldest is nine, but Dad only got to
enjoy her for about a year or two.
LEB: Were there resources in the community that helped
you?
JG: There were two things that helped us. Two of my
brothers are doctors and my oldest brother, John, specializes
in geriatric care. They recognized the early signs. Other
family members thought it was just Dad being Dad. When
he was in his forties, Dad used to call us by the wrong
names. There were so many of us and all our names started
with “J.” It’s no wonder he got confused.
About 10 or 15 years after my mother passed away, my
father met a wonderful woman, Judy Shea, who became
his caregiver. She loved him dearly and really helped us.
To this day we call her “Grandma.”
LEB: How did you decide to move your father out of his
home?
JG: When Judy went to work, my Dad’s brother or a
friend would come over, but if there was any gap in
coverage, my father could get into trouble. At some point,
he started walking out of the house and couldn’t find
16
his way back. Then we knew that he needed 24-hour
care and we decided that it was time to place him in a
nursing facility that specialized in Alzheimer’s. They take
wonderful care of him.
LEB: Was he resistant when you moved him?
JG: A little. He fooled the doctors, who believed at first
that he could manage in an assisted living residence. It
took about a week for them to realize that when he got up
in the middle of the night, he never found his room again.
I think my father understood.
The hardest thing about dealing with Alzheimer’s is that
at some point you’re not sure that anything is wrong.
Someone tells the same story three or four times and it
embarrasses you. You think, “Come on Dad, you know,
you already told that story.” Now, I’d give anything to hear
him tell a story three or four times.
LEB: How has your Dad’s illness affected your children?
JG: I think my children have been cheated. I remember
my time with my grandparents. I didn’t know my mother’s
father. Mom was the youngest of 15. Her dad died when
she was seven and her mom died when I was three. But I had
my father’s parents, and they were great. My grandmother
was a wonderful cook. We went over there every Sunday
for lunch. Grandpa used to take us mushroom hunting,
made houses out of matchsticks and roosters out of corn.
My kids haven’t had a chance to do that.
LEB: When did you decide to talk publicly? Was that a
hard decision for you and your family?
JG: Initially, because we were somewhat embarrassed. We
didn’t want people to think there was something really
wrong with my dad because we’re proud of him. But four
or five years ago, I realized that I had a platform to help.
And I also started thinking about what if it happens to
me? Worse, what if it happens to my kids? The important
thing is to solve the problem and if I can make a difference,
whatever it is, we’re going to do whatever we can.
LEB: When you talk, your voice is so powerful — everyone
listens; people interested in investing in research, people
interested in investing in services, people who run nursing
homes. This is great for our cause.
JG: The most important thing is early recognition because
you may be able to slow the disease down while the family
prepares for the later stages. And in the early stage of the
disease, the family can still get fulfillment in their relation
ship with their parents. This is so important because
eventually there’s not going to be much of a relationship.
LEB: Do you worry about yourself?
JG: Absolutely. When I call my kids the wrong names, I
start thinking that I have what my father had. And my kids’
names aren’t that close. In my family, my brothers were
John, George, and Jerry.
I worry because I don’t want to be a burden on my kids
or have them consider me a burden. I want to be there
to help them. For as long as possible, I want to say to my
daughter, “You know what, Serena? I’m taking the kids
from you today. You and your husband go have a couple
of days off.”
LEB: That would be music to anyone’s ears!
JG: It’s so important for people to speak up and reach out.
As you say, in less than 50 years, 1 out of every 5 New
Yorkers will either have Alzheimer’s or be taking care of
someone who does. That’s a lot of people. I say don’t be
embarrassed if you’ve been diagnosed with Alzheimer’s or
if you have a family member with the disease. We all have
to reach out and talk about it. That’s the only way we’ll
help everyone understand the importance of finding a cure
and helping people.
LEB: When you speak out, you’re also encouraging young
scientists to enter the field. Otherwise, they may believe
it’s just an old person’s disease without adequate funding.
In 2010 we’ll all have a chance to be counted during
the 2010 Census. These numbers will drive government
funding and structure — and so many other things for
the next ten years. We are starting a campaign to ensure
that our entire Alzheimer’s community is counted. For
example, we have been saying that over 250,000 New York
City residents have Alzheimer’s, but we think that is an
understated number.
JG: The growth of that number will be a new financial
problem for the health care system, which we’re already
worried about. This really needs to be addressed.
LEB: One scientist reminded me that we’ve already spent
something like $100 million dollars on the Swine Flu, but
this is miniscule compared to the impact of the Alzheimer’s
“pandemic” today — not to mention what lies ahead.
JG: I feel badly for those who don’t have loving caregivers.
This is not an easy disease to deal with, but if we educate
people on the importance of caregiving, it will make the
job easier.
LEB: You were fortunate to have a wonderful caregiver for
your father. We know how important that is, particularly
for those who need to retain a paid caregiver. We have
extensive 45-hour dementia training programs for home
care workers to address exactly this issue. We want
a paid caregiver to do all the things that a loving family
member would do.
JG: You have to have a real passion in your heart for
someone. Very shortly, we’re announcing a new award
named after Dad’s caregiver.
LEB: It’s an honor for me to be working at something that
has such an important affect on other people’s lives — and
it’s a way to honor my own dad. He died in his 80s, but until
he was in his 70s, he was such a terrific athlete that you
couldn’t beat him at any sport. I was there just before he
died. His final recognition of me was in his eyes that day
and it was a gift.
JG: My wife’s father died just after she saw him for the
last time. He had instructions not to be resuscitated, so the
third time he was on the breathing tube, I told her to go
before he passed. He waited to see her.
LEB: He wanted to say goodbye. They leave us with
such a wonderful, rich legacy for our children and
grandchildren.
JG: And the fight to live until it’s your time.
LEB: And to enjoy life. Every morning, when I get up, I say,
“Wow, I’m still here — at 64.”
JG: I say that at 44.
LEB: I’d like to teach my grandchildren to think that way
now.
Joe, thank you so much for talking with us today. The
folks who read our Newsletter will be so grateful to you
for helping us destigmatize Alzheimer’s disease and for
bringing the discussion further into the public’s mind.
Joe Girardi was named the Yankees’ 32nd manager in club history on October 30, 2007, becoming the 17th manager to have also played for the club. He was named 2006 National
League “Manager of the Year” by the Baseball Writers’ Association of America and the Sporting News. He appeared in 39 career postseason games as a player, most among all
current American League managers, and played parts of 15 seasons as a catcher in the Major Leagues with the Chicago Cubs (1989-92 and 2000-02), Colorado Rockies (1993-95),
New York Yankees (1996-99) and St. Louis Cardinals (2003). Joe was a member of three World Series Championship teams in New York (1996, 1998-99) and played in a total of six
postseasons with the Cubs (1989), Rockies (1995) and Yankees (1996-99). He graduated from Northwestern University in 1986 with a bachelor’s degree in industrial engineering.
While at Northwestern, he was a three-time Academic All-American and two-time All-Big 10 selection at catcher. He was elected to the College Sports Information Directors Hall
of Fame on July 1, 2007, becoming the first former Major Leaguer to be enshrined and has also received the 2007 Distinguished Alumni Award from the Northwestern University
Department of Industrial Engineering and Management Sciences. Joe established his own charity, Catch 25, dedicated to providing support to families and individuals challenged
with ALS, Alzheimer’s disease, cancer and fertility issues and providing assistance through scholarships, financial aid and charitable donations for children and adults who may not
otherwise have financial and emotional support. Joe’s father, Jerry Girardi, suffers from Alzheimer’s disease. He and his wife, Kim, have three children, Serena, Dante and Lena.
17
Dear Helpline, My mother has Alzheimer’s disease and is no longer safe at home
alone while I am at work. I would like her to attend a day program and she has agreed. The
program costs $85 per day plus transportation. My mother has some savings, but my brother and
I are concerned that her money will quickly run out and there will be nothing left to pay for her
ongoing care, especially as her needs continue to increase. We are really at a loss. Please help,
— Anxious in Brooklyn
Dear Anxious,
At the end of 2008, many social adult day programs lost their funding and have since
become private pay programs. As a result, many families are in situations similar to what you
have described: there is some money available but the fear of running out quickly or not
having enough to cover the cost of care down the road can sometimes prevent families from
spending that money.
One option might be to see if the program you are interested in having your mother attend
offers a sliding scale option. Some programs are able to provide reduced rates based on the
person with dementia’s financial situation. To find out if the program offers a sliding scale, call
the program directly and speak with an administrator.
Another possible option worth considering is Community Medicaid. Community
Medicaid guidelines are strict in terms of income and resources, but there are things that
can be done in order to become eligible. Remember, however, that Medicaid only covers
medical model adult day, and not social model programs. That said, some managed Medicaid
programs do provide coverage for social programs as well. Speak to the staff at the program
you are interested in bringing your mother to and see if they have contracts with
any managed Medicaid providers.
The 24-hour Helpline is
A third option is for you to contact the Alzheimer’s Association’s 24-hour
always available to answer
Helpline at 800-272-3900. The New York City Chapter has financial assistance
your questions and help you
grants available to those who qualify. The application process is just that—a
through difficult times.
process—and will involve an assessment of your current situation as well as the
We can be reached 24 hours
financial status of the person with dementia. Also included in the assessment is the
a day, 7 days a week, 365
development of a long-term plan to ensure that the person with dementia’s needs
days a year at 800-272-3900
are still able to be met even after the grant has been completed. Calling in advance
or [email protected].
is always a better option than waiting until you are in a more desperate situation.
Remember, too, that grants are limited and awarded only once annually. If a grant
is awarded, because it is only a short-term solution, you may want to consider sharing the cost of
the program between your mother’s personal finances and the Association grant. This way, half
of the bill can be paid by your family (using your mother’s savings) and the other half can be paid
with the Association grant. This way, Mom can attend the program twice as long and you can,
hopefully, take some of the pressure and concern off of you and your brother.
If you would like more information about any of these options, please call our 24-hour
Helpline.
18
Meeting in the Middle
D
ynamics between siblings are unique to each
family and often very complicated. Sometimes
siblings get along great. Sometimes lifelong
conflicts exist and arranging care for a parent with dementia
reignites past tensions. Other times just the stress of being
a caregiver takes its toll on sibling relationships. Whatever
the situation may be, navigating through these waters can
sometimes be treacherous.
David, 50, and Chris, 46, had not been in touch for
several years. The only time they spoke was when it
pertained to their parents, who live together in their own
home in Queens and both suffer from dementia. Despite
little communication, the siblings are both involved in their
parents’ care. If one sees the other’s car in the driveway, he
keeps on driving. And vice versa. This has been going on
for over a year.
During a recent visit David began to feel his parents
needed additional help in the house. Surprisingly, Mom
agreed. Dad was less easy to convince but after a while he
admitted that a little help might not be such a bad thing.
David called Chris and they decided to explore their
options.
Chris called the 24-hour Helpline and a volunteer
told him about a number of different options including
housekeeping, personal care, and home attendant services.
Chris said his parents have some money saved up and that
he’d like to contact some agencies but didn’t know where
to start. The Helpline volunteer sent him an information
packet along with the Chapter’s Home Care Sources
booklet to assist them in their search.
A few weeks later, the 24-hour Helpline received
another call from Chris. He realized his parents’ savings
would not last much longer if they had to pay privately
for home care and had called his brother to discuss their
options. David and Chris had a heated discussion that
soon turned into an argument over which agency would
provide the service and how many
hours of help their parents would
need each week. The call was
referred to a Care Consultant who
initially spoke with each sibling
separately by telephone. After
several calls with each, David and
Chris agreed to a family meeting
with the Care Consultant in the
hopes of coming to some sort of
agreement on a plan.
During the initial meeting,
each sibling shared his perspective
Matt Kudish, MSW
of the situation. There was little
Director, Helpline &
interaction between David and
Care Consultation
Chris during the meeting; each
[email protected]
directed most of what he said to
the Care Consultant. However, at the end of the meeting,
they agreed to come back the following week. Their
assignment for the next meeting was to each make a list
of the types of help they felt their parents needed in order
to remain safely at home for as long as possible. And they
each agreed to speak with Mom and Dad to get their input
as well.
David, Chris and the Care Consultant met several times
over the next few weeks. David and Chris shared their
lists. The Care Consultant encouraged them to speak to
one another and soon they were communicating with one
another directly and calmly. They eventually determined
that four hours a day, three days a week would be a good
beginning. And they agreed they would use Mom and
Dad’s money to pay for half of the cost and that they would
split the remaining half.
David and Chris are still not speaking unless it’s about
Mom and Dad, but they were able to meet in the middle
to ensure their parents get what they need and what they
deserve.
Alzheimer’s Association care consultants are here to assist you and your family when dealing with difficult situations. If you would like
to meet with a care consultant, please call the Chapter at 646-744-2900 or our 24-hour Helpline at 800-272-3900. Care Consultation
services are available at no charge. Caregivers featured in this series have agreed to share their stories. Names have been changed
to protect their anonymity.
19
Support Groups — More Necessary Than Ever
The economic crisis that started in the summer of 2007 has created serious difficulties for
caregivers in the Chapter’s support groups. “It’s like dementia,” a caregiver said to me. “It seemed
to come out of nowhere, although when you think about it, there were signs of it for years we
could deny or ignore. And it’s awful to think about how long it could last.”
In November 2008, the NYC Department for the Aging (DFTA) announced it was going to
eliminate funding for about a dozen social adult day programs. By January 2009, those programs
closed. The result is many caregivers can’t find a social adult day program that is affordable and
open five days a week.
In the Madison area of Brooklyn where Sophie Finkelman leads a group, she reports that
caregivers in her group recently learned some programs won’t be operating in the summer
at all.
Wendy Panken, LCSW
Manager, Support Groups
[email protected]
The social adult day program at the Self Help Clearview Senior Center in Bayside, Queens
lost its DFTA funding and closed after 20 years. However, caregivers were so desperate to keep
the program going a few days a week that they volunteered to pay higher fees, according to Ellen
Sarokin, Senior Social Worker and support group leader at the Self Help Clearview program.
Trish Spoto, former director of the Health Enhancement Program (HEP) and support group
leader at Lenox Hill Neighborhood House in Manhattan (another program shut down after 13
years), says most caregivers haven’t been able to find another program. “The burden on them has
definitely increased,” she said.
The destruction of social adult day programs is a major loss for all caregivers. These
programs give caregivers the opportunity to go to jobs, take care of their own needs and
attend to other problems with the peace of mind that their relatives with dementia are being
supervised observed and occupied by staff trained in dementia care. Being occupied during
the day may help a person with dementia sleep through the night. Every Alzheimer’s caregiver
knows what a blessing that is.
A 2007 public policy report of the American Association of Retired People (AARP) revealed
that the national value of unpaid family caregiving was $375 billion, which exceeded the $311
billion spent on Medicaid that year. Family caregivers are the foundation, the bedrock, of the
long term healthcare system in the United States and are praised for their dedication and personal
sacrifice. They deserve all the help they can get. Cutting essential programs, like social adult day
programs, is a slap in the face to caregivers.
Fortunately, the Chapter’s 120 caregiver support groups as well as the training and supervision
offered to group leaders are all free of charge. Support groups are essential to caregivers and we
plan to be around for a long time.
For more information, please contact Sharon Shaw at 646-744-2932 or [email protected] or with
me at 646-744-2917 or [email protected].
20
African-American Outreach
In celebration of Black History Month, the Citywide Mental Health Coalition for the Black
Elderly held its Forum at the Chapter for a second year. Ninety attendees gathered to hear
Dr. Georges J. Casimir, Associate Director of Geriatric Psychiatry at SUNY Downstate Medical
Center, speak on The Cultural Aspects of Memory Loss in African-Americans. Attendeees commented
on his ability to communicate, with clarity, the complicated factors involved in treating dementia.
“Community Resources for the Patient with Dementia: Availability, Access and Utilization” followed,
presented by Lorna Walcott-Brown, MS, Director of Social Services for the Brooklyn Alzheimer’s
Disease Assistance Center (ADAC), and Sharon E. McKenzie, PhD, from NYU School of Medicine,
Alzheimer’s Disease Center. A lively Q&A discussion followed. The audience of professional
providers and other community members responded with great interest. This coalition, of which
the Alzheimer’s Association, NYC Chapter is a member, is an important affiliate of the Chapter
throughout the five boroughs. Its goal is to ensure that treatment of African-American elders
is culturally competent and that adequate education about the availability of services in their
communities is provided. The dynamic partnership of African-American Outreach and the
Citywide Mental Health Coalition for the Black Elderly is widely recognized and received.
Rosemary Irving, LCSW
Manager, African-American
Outreach
[email protected]
As we mentioned in our last issue, the Chapter celebrated Black History Month with a special
luncheon for African-American sorority and fraternity members. Several requests for outreach
presentations resulted. Among them were Friendship Baptist Church in Harlem — Women’s Health Forum,
and Equal Employment Opportunity Commission’s (EEOC) — Women’s History Month Celebration. We
also received a request from the National Council of Negro Women. Several sorority chapters have asked us to
notify them of our programs and services. There is a growing interest to learn more about Alzheimer’s disease
and other dementias as well as the Alzheimer’s Association.
During the Spring season, African-American Outreach renewed it efforts to churches throughout the five
boroughs. If you would like us to come to your church group or other group meetings, please call us.
African-American Outreach is interested in hearing from you. Please contact me at 646-744-2922 or by e-mail if you
are a member of or know organizations where we could speak about Alzheimer’s disease and the resources available
at the NYC Chapter.
Chinese Outreach
I am pleased to announce the NYC Chapter has received funding from the Van Ameringen
Foundation, Inc., for development of a Chinese-language information package for Chinese
consumers and family caregivers. This packet will help the Chinese community to better
understand Alzheimer’s disease and other dementias, as well as highlighting services and resources
available to them. We are also compiling information for a Chinese/English brochure on
Alzheimer’s and dementia, co-sponsored by the Queens Public Library, which will be included
in the information package.
On March 8th, the Chapter’s first Chinese-language support group was held in Manhattan’s
Chinatown. Fourteen participants shared their feelings and experiences in caring for a loved
one with Alzheimer’s disease or a related dementia. The Chinatown support group will be held
on the 2nd Sunday of every month. A second Chinese-language support group in Bensonhurst,
Fai Lin Lau, MSW
Manager, Chinese Outreach
[email protected]
21
Brooklyn began in June 2009.
In addition to support groups, two seminars in Chinese were held in Sunset Park,
Brooklyn: Legal & Financial Planning on April 18th, and Medicaid Home Care on May 9th.
Family members of those affected by the disease had a chance to learn about legal issues
and the Medicaid system, free of charge. We hope to continue to extend services to the
Sunset Park community, which has a large Chinese population.
There is no doubt the economic crisis has affected consumers and family caregivers
in the Chinese community. Due to budget cuts, funding for social services for the
elderly has been reduced or eliminated. For example, some of the social adult day care
programs were eliminated or now require participants to pay their own fee.
Many family caregivers are losing their jobs, homes and savings due to this economic
crisis, adding to the stress of caring for a loved one. Many resources are needed in the Chinese
community, especially for those with a language barrier. The Chinese Information Package will be a valuable
resource for people with Alzheimer’s disease and other dementias, their family members and caregivers.
To obtain information about Chinese-language seminars, trainings and support groups, please contact me at 646-744-2951
or by e-mail at [email protected].
Latino Outreach
Our History
Latino outreach at the Chapter was initiated in the 90’s as a result of the increased
number of Latinos seeking services. At the beginning, there was limited ability to
help individuals who did not speak English. There were times when calls were
answered by one of the administrative assistants who served as interpreter between
the caller and the Helpline counselor.
By the mid 90’s, the NYC Chapter attempted to create a Latino Task Force or
Advisory Group to better understand the needs of the NYC Latino community
affected by Alzheimer’s. This group aimed to raise awareness about the disease not
only among relatives, but also Latino professionals.
Licet Valois, MSW, MPS
Manager, Latino Outreach
[email protected]
In the late 90’s, the need to support individuals from various ethnic groups was
growing. It was then that the Chapter launched an initiative to meet the needs of
other communities. The first support group for family caregivers in Spanish ran for
a period of 8 years.
In 2001, the Chapter’s priority was to expand services to the underserved and
diverse communities. Latinos were the largest group and had the greatest number of
seniors. Therefore, a bilingual/Spanish-speaking worker was hired to manage a new program: Diversity &
Outreach, offering services to an ethnically diverse population with an emphasis on the Latino community.
Some of the services included community presentations, educational seminars, care consultation, media
presentations — all dependent upon positive relationship building with leaders of the community.
In 2005, the Diversity and Outreach Program expanded with the addition of African-American Outreach.
22
Since then, the Latino Outreach Program has expanded its programs and services throughout New York
City’s five boroughs.
Today, presentations in Spanish are conducted to increase awareness and dispel myths about dementia at
senior centers, churches, community centers, mental health clinics, housing facilities, adult day care centers,
hospitals, nursing homes, assisted living facilities, libraries and other social and community organizations.
Latinos are learning that although there is no cure, quality of life for people with dementia can be enhanced
and they don’t just have to live with the disease.
We are also proud that we offer training to home care workers and family members in Spanish, and know
that the demand for these trainings is only going to increase.
Considering that Latinos, like other groups, have specific immigration issues, we formed alliances with
some of the Hispanic Consulates (Mexican & Colombian) to reach out to the immigrant community at
large. This strategy allows us to visit the consulates on a regular basis and disseminate information through
literature and presentations, answer questions and provide support at many levels during various events. We
also counsel long-distance caregivers, many of whom were silently witnessing the deterioration of their loved
ones overseas without fully understanding the disease nor having any guidance.
We also have a presence internationally. In Colombia, we made contact with some of the local associations,
contributed literature and made presentations for staff at nursing homes and community centers. Consequently,
the work of the NYC Chapter was recognized in local magazines and newsletters.
Locally, we see an increase in the number of people on our mailing list, doubling over the last 2 years. As
we go into the community to disseminate information, more people contact us needing our help or wanting
to learn.
People contact us seeking guidance about taking their family member for an evaluation, legal advice, and
finding an adult day care program that has the capacity to serve Spanish speaking individuals. They also want
to learn about the process of applying for home care services, how to access supportive counseling, and information about participating in a support group. We were pleased that in 2008 we added a full-time bi-lingual
Helpline Associate, and launched an outreach program to the Chinese community.
We are proud to have developed En Español, the Chapter’s 16-page quarterly newsletter in Spanish, which
contains information for and by caregivers, professionals and people with a diagnosis. The information
covers many topics, including behavior management, treatment, research and caregivers’ personal stories. It is
distributed through the numerous community resources and agencies we are in touch with on a regular basis,
as well as to individuals on our mailing list. We are most grateful to The Achelis Foundation for its generous
support of En Español. We are also able to circulate and publicize relevant information in Spanish through
our e-Newsletter and Web site www.alznyc.org/espanol.
When it comes to working with the Latino community, we strive to ensure that individuals are connected
with the appropriate services and resources. We have come a long way and, despite these difficult economic
times, our goal is to continue to provide quality service to all who need us.
Please feel free to contact me at 646-744-2949 or by e-mail if you need assistance or additional information. Also, if
you would like to receive the Chapter’s Revista En Español, please contact our 24-hour Helpline at 800-272-3900 or visit
www.alznyc.org/espanol to sign up for our mailing list.
23
Let’s Close the Gap on Dementia Care Training
B
Della Frazier-Rios, RN, MS
Senior Vice President,
Director of Education
& Outreach
[email protected]
y nature of the illness,
people with Alzheimer’s
disease or other forms
of dementia will at some point
be recipients of long-term care
services. About 70% of people with
dementia receive these services
at home. The primary providers
of these services (in addition to
family members) are the legions of
home care workers who are either
working independently or through
an agency.
In NYC, there are currently at
least 100,000 jobs in home care and
community-based direct care, with a
projected demand for nearly 30,000
new and replacement positions over
the decade ending in 2012.1
Many (probably most) of these workers are caring for
a person with dementia (PWD).
I am reminded by Nancy Lee Hendley, Chapter
Dementia Care Trainer, that home care aides who work
with a PWD perform one of the most difficult jobs
imaginable. They are often alone with the PWD for
many hours with very limited support. Yet the amount
of dementia care training that most home care workers
receive is woefully inadequate to prepare them to care for
this very vulnerable and misunderstood population.
To make up for this serious omission, the NYC Chapter
offers a 45-hour Dementia Care Training Program for
home care workers. The primary goal of this program is
to prepare a workforce that will ensure quality care in the
homes of people with dementia. This specialized dementia
training provides the basic skills necessary to enable aides
to manage the symptoms of Alzheimer’s disease and
related dementias – improving the quality of life for the
PWD and their family. This program helps the workers
understand the person in their care and offers pathways to
mutual respect.
24
Phyllis Ettinger, President and CEO of Royal Health
Care Services, in a recent conversation about some of her
aides who have attended this training, said that “families
ask all the time” if the aide that will be assigned to care
for their relative is trained to take care of someone with
dementia. Phyllis went on to say the training is “certainly
worthwhile and gives the aides a huge advantage in their
work and in their lives.”
Phyllis then added, “I believe the training program has
a major impact on retention. I don’t get those ‘Get me out
of here’ phone calls from aides because they understand
what’s happening with their clients and are better able to
manage constructively.”
You have probably seen our quarterly feature, In Our
Own Words, in which the aides describe the impact of the
training on their client, the client’s family and even their
own personal relationships (see page 27 in this issue). One
quote that was so telling: “If I had this training before, I
wouldn’t have had to leave my last job.” We’re confident
that this training has a positive effect on reducing turnover
rates. Turnover is very costly, not only with regard to the
aide losing income, the agency losing a client to another
agency, but perhaps most especially to the PWD. They lose
a consistent caregiver who knows and understands them,
one who has spent time to form a bond. Instead, care
is handled by a series of strangers thereby increasing the
PWD’s emotional stress and increasing the risks to their
well-being, all of which is associated with gaps in care.
Because of the need for and the success of this program,
in 2007, with a grant from the NewYork Community Trust
Co., Alison Reynoso, Dementia Care Trainer, developed
and subsequently delivered this training in Spanish for
Spanish-speaking home care workers.
The 45-hour Dementia Care Training Programs in
both English and Spanish are offered several times a year.
References
1. Seavey, D., Dawson, S., Rodat, C., Addressing New York City’s Care Gap,
c2007.
Lessons Learned
“I
didn’t think this was rocket science, but it sure is difficult,” remarked a family member,
who attended a recent Family Caregiver Workshop. What he was referring to was his
realization that in order to improve his quality of life and the quality of life of his family
member – he needs to change the way he thinks, solves problems, and communicates, because
the person with dementia (PWD) is incapable of changing.
We live in a fast-paced environment, we talk fast, we rush out of the house in the morning to
meetings, to doctors’ appointments, always juggling multiple things…. but this is not the world
of the PWD. Caregivers attending the 10-hour workshops — which are conducted during
the daytime, in the evenings, and on Saturdays — learn to understand things from the PWD’s
perspective and provide care utilizing a person-centered approach (building their self-esteem
and retained skills). Topics explored during this interactive training include: Understanding
Dementia; Strategies for Effective Verbal and Non-Verbal Communication with the PWD, Physicians,
Family Members, Home Health Aides and Other Health Care Personnel; All Behavior Has Meaning;
Caring for the Caregiver; How to Advocate forYour Family Member; Safety in the Home; and Developing
Creative and Meaningful Activities (and we actually find our creative selves in class). In addition,
participants receive written materials for each course module, which they can utilize later as
a reference guide or share with other family members, home health aides or friends of the
family.
Amy Trommer
[email protected]
What follows are key lessons from the training shared by family members. “The sessions
have helped me look through a different lens that will change as the PWD changes.” “I now
know the importance of learning to be wrong, rather than blaming the PWD.” “I understand
the need to be flexible and to adopt the ‘So What Attitude,’ it really doesn’t matter if my
family member is not bathing everyday.” “I now know my job is a detective, I need to better
understand and uncover my mother’s behavior and help ease her life.” “I now understand how
frustrating it is for my family member to lose her independence.” “I now try to think as the
PWD does.” “Now that I know the PWD lives in a much slower world, it is critical to simplify
things.” “I know that I am not alone and what my PWD is experiencing is not unusual.”
“Each PWD is unique.” “…I understand the importance of staying calm, not proving my
point, reasoning or arguing.” “I have learned to accept what is… and how critical it is to take
care of myself and ask for help from others.” “I have learned new ways to relate to my Mother
which makes me feel empowered.” “This seminar is informative, helpful and enlightening…
and even enjoyable for a heart-breaking situation.”
Is it difficult to incorporate lessons learned during the course of the training in everyday
life? Absolutely! Are caregivers reporting that they are gradually adapting their behaviors and
putting lessons learned into practice? Definitely, and most importantly family members are
noticing improved relationships with the PWD.
For more information about the Family Caregiver Workshops, please call the 24-hour Helpline at
1-800-272-3900.
25
A Reason to Celebrate!
February 26, 2009 Graduates
Mmah Bangoura, Marianita Barriga, Shanta Brijlal,
Daphney Chevrin, Jasmine German, Hermine Green,
Christine Iferi, Grazyna Puzio, Jacqueline Ryan,
Elaine Servis, Ernestine Simon, Ravena Simpson,
Shirley Tate, Judith Wilson, Neirys Wolmart
It was a true pleasure to celebrate the
completion of the 45-hour Dementia Care
Training by honoring the graduates on
February 26, 2009. The impact of the training
on the graduates was expressed by one person
as “A gift with a lift.” I wish each graduate
well as they continue to make a difference in
people’s lives.
—Nancy Lee Hendley
April 7, 2009 Graduates
Gloria Feliz, Sonia Disla, Luz Gutierrez, Beatriz Carrasco,
Carmen Mercado, Gloria Morales, Monica Ortega,
Carolina Luciano, Francisca Bueno, Luisa Melo,
Narciso Frica (Nelson), Miguelina Nuñez, Simona Lerebours,
Nilda Rosado
April 7, 2009 became a very special day
for the 14 home health aides who successfully
completed our 45-hour Dementia Care
Training in Spanish. These professionals
showed great initiative, were always eager to
learn and demonstrated exceptional warmth
and compassion to those under their care. We
value their commitment and their efforts; that is
a great reason to celebrate! Congratulations!
—Alison E. Reynoso
In NYC, tens of thousands of people with dementia are living at home and being cared for by Home Care Aides. The work
of caring for people with dementia requires specialized skills and exceptional sensitivity. To prepare home care workers to
become part of this much-needed, capable workforce, we at the NYC Chapter offer a variety of training programs.
— Della Frazier-Rios, Senior Vice President, Director of Education and Outreach
26
In Our Own Words
I interviewed Alejandro Berti, a music therapist currently working at a nursing home in Manhattan. I was privileged to
accompany Alejandro at his work and observe the way that he relates to persons with dementia. Alejandro graduated from
the 45-hour Dementia Care Training in December of 2008.
Alejandro: I first met Ilene (a person with dementia)
in July of 2008. She loved to socialize. She used to go
dancing at the Savoy in Harlem. I would often dance with
her at birthday parties and musical events. She was a good
dancer. Following a hospitalization,
Ilene experienced a severe decline. She
became wheelchair bound and struggled
to say even one word.
In my role as a music therapist I try
to connect to the people I work with
in any way that they can. Some of the
people are still verbal. Others can dance
or sing. Some prefer to watch TV. I
adjust the way that I am to match their
needs.
Nancy: Can you give me an example?
Alejandro: One person in my group
needs to get up and walk into the
hallway occasionally. I always have
a chair available for that person in the group so that she
knows that she is included. She can be in the group how
she can. (Not necessarily the way I want her to be.)
Nancy: Back to Ilene.
Alejandro: Ilene is loved by all of the staff. She has such a
great personality. In her current condition, just saying my
name seems to take all of the energy that she can muster.
You can tell that she wants to speak, to communicate. You
see it in her eyes, in the way that she engages her whole
body in the effort to speak.
Nancy: What happened when he played it for her?
Alejandro: Ilene lit up. She followed Bob around the
room with her eyes.
Later that day Ilene’s daughter
and granddaughter were visiting. I
mentioned to them that Ilene had
chosen the song Stardust during our
session. Ilene’s daughter smiled as she
recalled, “That was my parent’s song.
They fell in love with each other while
they were dancing to Stardust.”
Even when a person is severely
compromised, you can reach them. You
can make a relationship. If I only had a
sing-along every day and I didn’t bother
about their names, lives or their past
experiences, it wouldn’t mean anything.
It would be just a sing-along. The
relationship would be missing.
Nancy: How do you preserve yourself?
Alejandro: I like playing Frisbee in the park. I play music
at home. I talk with my girlfriend about work. We share
these kinds of stories every day. She also works in a nursing
home as a music therapist.
My work keeps me going. I have learned how to truly
appreciate their responses, to savor the moments like the
one with Ilene. I leave work with a sense of satisfaction.
I know that at least while I am there things get a little bit
better in a way. I know that I make a difference.
For a holiday the hospital hired four accordion players.
I went with one of the players named Bob who sang
some popular songs from his repertoire. Unaware of the
difficulties that Ilene was experiencing, Bob asked her if
there was a special song that she would like to hear.
Nancy: And the future?
After a moment or two Ilene gathered up her whole
body, and with great effort uttered something that sounded
like “Shasduss.” Bob and I looked at each other and tried to
figure out what Ilene might be trying to say. Bob guessed,
“Stardust.” She nodded her head with a look of grateful
relief.
Alejandro: I learned the physical aspects of the disease
process. I learned to wait, to be patient. I learned to take
a pause, to breathe, to sense the energy of what is going on,
to be present, and to take care of myself. I also learned that
having good manners can help to build trust with these
people.
Alejandro: I want to work with this population for the
rest of my life.
Nancy: What did you get out of the 45-hour training?
27
Federal and State Alzheimer’s Advocacy
Federal Update
With the passage of the
stimulus plan (American Recovery
and Reinvestment Act), New York
State will get an estimated total of
$24.6 billion over two years.
The FMAP (Federal Medicaid
Assistance Percentage) portion of
the stimulus plan is expected to
provide NYS with $11 billion
which advocates look to the
governor spending for Medicaid
purposes only. The FMAP money
Ann Berson, MUP
should help deal with the already
Vice President,
high and rising Medicaid costs,
Director of Public Policy
and Governor Paterson was active
[email protected]
with the National Governor’s
Association in seeking Medicaid relief. The governor’s
press release indicated 70% will be retained by the state
with localities getting 30%.
In early March, Governor Paterson, Senate Majority
Leader Malcolm A. Smith, and Assembly Speaker Sheldon
Silver announced that county governments and the City of
New York would receive an estimated total of $2.7 billion
in fiscal relief through FMAP reimbursements
for Medicaid over 27 months. Of this amount,
NYC will receive an estimated $1.9 billion.
Mayor Bloomberg, however, said NYC is owed
$2.1 to $2.8 billion. A spokesman for the state
budget division said NYC was getting a fair and
equitable amount.
Congress added $10 billion for the National
Institutes of Health (NIH) through the American
Recovery and Reinvestment Act. This is the
largest funding increase in NIH in five years. The
Alzheimer’s Association Advocacy and Public
Policy Division in Washington, DC is optimistic
that part of the funding will support research to
cure, prevent, and effectively treat Alzheimer’s
disease. Thousands of advocates had participated
in The Advocacy and Public Policy Division’s outreach
efforts to Congress in support of passage of the NIH
funding. Senators Arlen Specter (R-PA) and Tom Harkin
(D-IA) actively championed the NIH funding increase.
28
The Alzheimer’s Association 21st Annual Public Policy
Forum was held March 23-25 in Washington, DC. There
were over 500 registrants. The Forum focused on making
Alzheimer’s a state and federal priority and on what actions
need to be taken. In this context, a major event was the
release of the National Alzheimer’s Strategic Plan at a
hearing of the Senate Special Committee on Aging. The
report presented the key conclusions of the Alzheimer’s
Study Group co-chaired by former Speaker of the House
Newt Gingrich and former Senator Bob Kerry, President
of the New School in NYC.
The Alzheimer’s Study Group report found that an
overwhelming crisis is faced that “without a means of
prevention, better treatment, or cure, Alzheimer’s disease is
projected to afflict 10 million Americans from the Baby
Boom generation and contribute cumulative costs of almost
$20 trillion to Medicare and Medicaid between 2010
and 2050.” A key recommendation is the establishment
by 2010 of an Alzheimer’s public/private partnership in
the form of an outcomes-oriented and project focused
Alzheimer’s Solutions Project Office within the federal
government. The office would undertake a major effort
to end Alzheimer’s and bring the scale of what needs to be
done through research to national attention.
Opening Session Advocates from New York State
At another event, Maria Shriver, a journalist and
member of the Kennedy family, described herself as “a
child of Alzheimer’s” in speaking of her father, Sargent
Shriver, who has Alzheimer’s disease. Ms. Shriver spoke
of an effort with which she was involved to bring national
attention to Alzheimer’s. She is the Executive Producer
along with HBO’s Sheila Nevins of HBO’s The Alzheimer’s
Project. This project, initially aired in May, involved four
documentaries devoted to cutting edge science, issues
of care giving, living with the disease, and children and
grandchildren of Alzheimer’s. Those in attendance at the
Forum were privileged to see part of the deeply moving
caregiver broadcast.
On March 25th advocates made Congressional visits
and discussed the Association’s priorities with their senators
and members of the House of Representatives. The federal
legislative priorities for 2009 are as follows:
1. Increasing fiscal year 2010 Alzheimer research funding
at the National Institutes of Health (NIH) by $250
million with a goal of reaching $1 billion per year in
funding in fiscal year 2011.
2. Establishing the Alzheimer’s Solutions Project Office
within the federal government backed by an appropriate
scale of investment.
3. Phasing out Medicare’s two-year waiting period so
individuals under the age of 65 with Alzheimer’s are
eligible for Medicare immediately after they receive
their determination of eligibility.
State Update
As the state budget deficit ballooned to as much as $16
billion, Governor Paterson, Assembly Speaker Sheldon
Silver, and Senate Majority Leader Malcolm A. Smith
sought ways to deal with the budget gap for fiscal year
2009-2010 (April 1, 2009 – March 31, 2010). At the end
of March, as reported in the New York Times, they presented
an agreement to close the gap through new taxes, federal
stimulus monies, and a slowdown in the growth of health
care spending.
The health care and long term care proposed changes
and reductions in the state budget for 2009-2010 had led
to intense advocacy efforts by providers of service and
advocates alike. The proposal for cutting Medicaid home
care funding by $475 million was met with particular
concern by the Home Care Association and other
organizations as the cuts would have a major impact on
provision of existing home care and New York’s home care
safety net. Our NYC Chapter had heightened concerns
for people with Alzheimer’s with regard to access to and
availability of home and community and residential care.
In the final budget proposal, the home care cuts were
substantially rejected.
NYC advocates and our Chapter participated with
advocates in expressing concerns regarding Governor
Paterson’s proposal to establish Regional Long Term
Care Assessment Centers throughout the state. While
supportive of the concept, many advocacy groups were
concerned that this would lead to an attempt to restrict
access to and reduce hours of care provided by the New
York City Medicaid personal care/home care program,
by far the largest program. These actions could lead to
institutionalization of people with Alzheimer’s who would
otherwise be able to remain at home, often at less cost.
New York State has long sought to reduce the costs
of the New York City personal care/home care program
that serves some 47,000 people, half of whom suffer from
dementia. The State was seeking to deal with disparities in
hours of personal care among New York City boroughs for
people with the same diagnosis and between the New York
City program and upstate, as upstate has vastly less personal
care available. Our concern in part was that disparities
can result from a number of factors. Older caregivers can
generally provide less care than their younger counterparts.
Activities of daily living (bathing, feeding, and dressing)
will differ depending upon the stage of the disease.
Trained personnel will be required as well as standards and
appropriate assessment tools. We are concerned as well
that hours of personal care are not reduced to the lowest
common denominator.
The final budget calls for a demonstration program to
be set up involving two sites one of which will be in one
New York City borough and the other in another region
of the state consisting of one or more contiguous counties.
The assessment centers will take over the role of the local
department of social services currently assessing the long
term care needs of clients and authorizing services. The
demonstration will apply to new applicants applying in these
areas after 1/1/2010. The development of the assessment
centers will be closely followed by our NYC Chapter and
concerned advocacy groups and organizations.
As one of its legislative agenda priorities for 2009,
The Coalition of New York State Alzheimer’s Association
Chapters sought restoration of funding for the Alzheimer’s
Coordinating Council and Alzheimer’s programs enabling
Chapters to continue to provide caregiver supports and
29
community based care, thereby delaying premature nursing
home placement.
$75,000 and $150,000 reappropriated from previous years
for the Alzheimer’s Coordinating Council.
The final state budget included funding for the
Coalition Chapters for fiscal year 2009-10 as follows:
$274,000 for the Alzheimer’s Community Assistance
Program (AlzCap); $246,000 for Education and Outreach;
This is my last Public Policy column for the newsletter.
After 17 years I will be retiring from the Chapter, and I
want to wish you all my best in the time to come.
NO COMPUTER?
Here’s How To Reach Your Elected Officials
For those of you who choose not to communicate via e-mail or do not know your State
Assemblyperson or State Senator, there are ways you can reach them to advocate or to express
your concerns on issues.
To advocate to a member of the Assembly, call 518-455-4000 and ask to be connected
to the general switchboard. Tell the person who answers that you are trying to identify your
representative. Once you give your zip code, you will be transferred to your Assemblyperson’s
office. You may have more than one possibility. Ask to be connected to one of them
and that office will guide you.
To identify and call your State Senator, call 518-455-2800. The Senate operator will ask for
your zip code in order to identify your State Senator. This operator will provide the telephone
number or connect you directly to the State Senator’s office.
If you want to write your Assemblyperson, send the letter to:
NYS Assembly
Albany, NY 12248
You can write to your State Senator at:
NYS Senate
Albany, NY 12247
Another option for identifying your elected officials is to call the League of Women Voters
of the City of New York at 212-725-3541. Once you provide your address, they will identify
your representative.
The following are addresses for writing to Governor Paterson, Mayor Bloomberg, and New
York Senators Schumer and Gillibrand:
30
Honorable David Paterson
Governor of New York
Executive Chamber
State Capitol
Albany, New York 12224
Honorable Michael R. Bloomberg
Mayor of the City of New York
City Hall
New York, NY 10007
Honorable Charles E. Schumer
United States Senate
Washington, DC 20510
Honorable Kirsten E. Gillibrand
United States Senate
Washington, DC 20510
New York State’s Power of Attorney Gets a
New Look and Better Control
The Durable General Power of Attorney (known as the “POA”) is a vital tool for families
who are caring for an elderly or disabled relative, especially when cognitive impairment and
dementia is an issue. The Power of Attorney is a highly recommended tool which allows the
disabled individual to appoint a surrogate to make legal and financial decisions when then are
unable to do so themselves. The word “power” in the title of the document clearly indicates that
this is a legal tool to be taken very seriously. A Power of Attorney allows the appointed agent
to perform many legal and financial functions for the grantor, including such tasks as: banking,
insurance, real estate, taxes, business, stocks, bonds, safe deposit boxes, and retirement accounts.
The agent under a POA can handle and appoint a successor agent. This broad range of abilities
has led to abuse, putting the frailest and neediest at risk.
In order to reduce the incidence of fraud or misuse of the Power of Attorney, NY State
introduced a new Power of Attorney document effective September 1, 2009. The new law
provides new safeguards and options. Please note, anyone who has executed a Power of Attorney
using the prior NYS form does not have to be concerned that their existing Power of Attorney
will no longer be valid. All POA’s signed before September 1, 2009 will still be valid and
accepted. After September 1, 2009 the following new features must be included in the NYS
Power of Attorney in order to be accepted by financial institutions within the state. The changes
to be implemented are as outlined below:
Judith D. Grimaldi,
CSW, JD, CELA
1. A Power of Attorney may be executed by anyone over the age of 18 and will be
considered “durable” unless noted otherwise.
2. In order for the POA to be valid, the grantor must sign the document before a
notary, and the appointed agents must also sign before a notary thus accepting the
position as the agent. The document is unusable until the agent signs to accept. A lapse
in time between the signing of both parties will not invalidate the power even if the grantor
becomes incapacitated before the agent signs the form. The logistics of getting all the required
signatures becomes very important.
3. Gifting powers are separated in a special “gifting rider” in the new Power of
Attorney. In the prior document, the power to make gifts was one of the many listed powers.
The gift was limited to the amount exempt for federal gift tax purposes and the language limited
the gifts to a certain group including spouse, children and descendants. The prior form did not
include gifts to the appointed agent.
The new gift rider acknowledges that gifting could fundamentally change the grantor’s estate
plan and specifically outlines options for gifting. The rider notes that in granting these powers to
the agent it could “significantly reduce your property or change how your property is distributed
at death.” Because of the seriousness of this power it must not only be notarized but
also signed by two witnesses. This gives the Power of Attorney the same weight as a Will as
it would have the same ability to change one’s estate plan. The rider also expands the amount
of the gift to any amount and allows gifting to the agent with a caution that the agent must
act in the best interest of the grantor. The rider gives the grantor the opportunity to give
instructions about the gifts and their purpose.
31
Summer 2009
wednesday JULY 1
tuesday JULY 14
monday AUGUST 10 EASING THE TRANSITION FROM HOME TO
A RESIDENTIAL CARE FACILITY
Time: 6:00 – 8:00 p.m.
Place: Chapter Office
UNDERSTANDING DEMENTIA: WHAT YOU
NEED TO KNOW AND WHERE TO GO
Time: 5:30 – 7:00 p.m.
thursday JULY 2
wednesday JULY 15
(Meeting held in Queens)
Time: 12:30 – 2:00 p.m.
Place: Samuel Field YM-YWHA
Cape Conference Room
59-28 Little Neck Parkway
Little Neck, NY
Time: 5:30 – 7:00 p.m.
EDUCATIONAL MEETING
Accepting the Challenge — Maximizing your
ability to be helpful
DVD by the Alzheimer’s Association,
Eastern North Carolina Chapter
Time: 6:00 – 7:30 p.m.
Topic: Ways of Helping
⦁ Visual, verbal and tactile cues
⦁ Recognizing the need
⦁ Providing the appropriate
assistance
SpeakerS:Chapter Education Staff monday JULY 6
LEGAL & FINANCIAL SEMINAR
Time: 12:00 – 1:30 p.m.
wednesday JULY 8
UNDERSTANDING DEMENTIA:
WHAT YOU NEED TO KNOW AND
WHERE TO GO – In Spanish
Time: 5:30 – 7:00 pm.
monday JULY 20
Time: 5:30 – 7:00pm
monday JULY 13 EDUCATIONAL MEETING
Accepting the Challenge — Communication
DVD by the Alzheimer’s Association,
Eastern North Carolina Chapter
Time: 6:00 – 7:30 p.m.
Topic: Communication
⦁ How you speak
⦁ What you say
⦁ How you respond
Speakers:Chapter Education Staff
32
Time: 5:30 – 7:00 p.m.
thursday JULY 23
Time: 5:30 – 7:00 p.m.
monday AUGUST 3
Time: 12:00 – 1:30 p.m.
wednesday AUGUST 12 UNDERSTANDING DEMENTIA:
WHERE TO GO – In English
Time: 5:30 – 7:00 p.m.
Place: Riverstone Senior Life Services
99 Ft. Washington Avenue
New York, NY 10032
friday AUGUST 14 friday JULY 10
Time: 12:00 – 1:30 pm.
tuesday AUGUST 11 thursday AUGUST 6
Time: 12:30 – 2:00 p.m.
Little Neck, NY
MEDICAID HOME CARE SEMINAR:
A PRACTICAL GUIDE TO THE SYSTEM
Time: 5:30 – 7:00 p.m.
Note: Prior attendance at a Legal &
Financial Seminar required.
Time: 12:00 – 1:30 p.m.
saturday AUGUST 15
Time: 1:00 – 2:30 p.m.
Place: Riverstone Senior Life Services
99 Ft. Washington Avenue
New York, NY 10032
monday AUGUST 17 LEGAL & FINANCIAL SEMINAR
Time: 5:30 – 7:00 p.m.
Summer 2009
wednesday AUGUST 19 wednesday SEPTEMBER 9
Time: 5:30 – 7:00p.m.
Time: 5:30 – 7:00 p.m.
monday AUGUST 24 LEGAL & FINANCIAL SEMINAR – In Spanish
Time: 5:30 – 7:00 p.m.
friday SEPTEMBER 11
Time: 12:00 – 1:30 p.m.
thursday AUGUST 27 LEGAL & FINANCIAL SEMINAR
Time: 5:30 – 7:00 p.m.
wednesday SEPTEMBER 2 EASING THE TRANSITION FROM HOME TO
A RESIDENTIAL CARE FACILITY
Time: 6:00 – 8:00 p.m.
monday SEPTEMBER 14 EDUCATIONAL MEETING
Time: 6:00 – 7:30 p.m.
Topic: Occupational Therapy for Everyday
Activities
⦁ How can OT techniques be
helpful for the caregiver?
⦁ Learn techniques for safe
movement.
⦁ Get answers from a professional.
Speaker: Sharon Martinez
thursday SEPTEMBER 3 UNDERSTANDING DEMENTIA: WHAT YOU
Time: 12:30 – 2:00 p.m.
Little Neck, N.Y.
MEDICAID HOME CARE SEMINAR:
A PRACTICAL GUIDE TO THE SYSTEM
Time: 5:30 – 7:00 p.m.
Note: Prior attendance at a Legal &
Financial Seminar required.
wednesday SEPTEMBER 16 UNDERSTANDING DEMENTIA: WHAT YOU
Time: 5:30 – 7:00 p.m.
monday SEPTEMBER 21
Time: 5:30 – 7:00 p.m.
thursday SEPTEMBER 24
tuesday SEPTEMBER 8 UNDERSTANDING DEMENTIA: WHAT YOU
Time: 5:30 – 7:00 p.m.
(Meeting held in Brooklyn)
Time: 6:30 – 8:00 p.m.
Place: Prospect Park Residence
1 Prospect Park West
Brooklyn, NY
Time: 5:30 – 7:00 p.m.
Come Join One of Our
Family Caregiver Workshops!
The Family Caregiver Workshop is a 10-hour
seminar devoted to the needs of the family
caregiver. The goals of the workshop are to:
• Provide knowledge about Alzheimer’s
disease (AD) and insight into the thoughts
and experience of the person with dementia
• Inform caregivers about communication
changes in AD
• Assist caregivers in developing practical skills
to enhance ongoing communication
• Present ways to understand the behaviors
associated with AD and helpful strategies
for managing them
• Encourage self care
• Provide emotional support to caregivers in
a safe and nonjudgmental environment
• Offer access to available resources
Attendance is required at all meetings
during a particular workshop session.
Prior attendance at an
“Understanding Dementia:
What You Need to Know and
Where to Go” meeting is
strongly recommended.
please note:
ALL MEETINGS ARE FREE OF
CHARGE AND SUBJECT TO
CHANGE.
Please call 1-800-272-3900 for more
information and to reserve a seat.
Reservations are mandatory for
all meetings.
The NYC Chapter Office is located at
360 Lexington Avenue, 4th Floor,
(between 40th and 41st Streets)
New York, NY 10017
Please be prepared to present
picture ID to the security guard in
the building lobby.
We wish to thank the following for
their generous donation of space for
the meetings:
CAPE at the Samuel Field YM-YWHA
Riverstone Senior Life Services
Prospect Park Residence
33
The NYC Chapter sponsors over 120 family caregiver support groups. Some groups are for spouses or adult children, others are mixed — made up of all caregivers.
Generic groups are for caregivers of all long-term illnesses. Before attending a support group, call the group leader and schedule a personal interview. We
recommend you attend “Understanding Dementia: What you Need to Know and Where to Go” at the Chapter office. Call the Helpline at 800-272-3900 to register.
Most support groups are open for new members, however, the following groups are actively seeking members. Call Wendy Panken, Support Group Manager at
646-744-2917 or visit our Web site at www.alznyc.org for a complete list of support groups.
Bronx
Adult Children’s Group
Riverdale Senior Services
(Netherland Ave & Kappock St)
DAY: 1st & 3rd Mondays
TIME: 6:00–7:30 PM
CONTACT: Wendy Bolton.............718-884-5900 x19
Mixed Groups
Montefiore Medical Center (Bainbridge Ave)
DAY: 1st & 3rd Wednesdays
TIME: 5:00–6:15 PM
CONTACT: Mark Goodwin....................718-920-5605
Schervier Nursing Care Center (Riverdale)
DAY: every other Wednesday
TIME: 1:30–3:00 PM
CONTACT: Abigail Nathanson..............718-548-1700
Spouses’ and Partners’ Group
Hebrew Home at Riverdale
DAY: 1st & 3rd Tuesdays
TIME: 11:30 AM–1:00 PM
CONTACT: Susan Kunkel......................718-581-1249
Brooklyn
Adult Children’s Groups
Prospect Park Residence (Park Slope)
TIME: 6:45–8:00 PM
CONTACT: Joan Griffith Vega...............718-788-3468
TIME: 6:45–8:00 PM
CONTACT: Justine McGovern...............917-443-5109
Kings Highway Reformed Church (Quentin Rd)
DAY: every other Tuesday
TIME: 6:30–8:00 PM
CONTACT: Sophie Finkelman................718-646-2973
Mixed Groups
Bensonhurst Senior Assistance Center
TIME: 6:30–8:00 PM
CONTACT: Mary Hume.........................718-236-3205
Brooklyn Alzheimer’s Disease
Assistance Center (Lenox Road)
TIME: 2:30–3:30 PM
CONTACT: Lorna Walcott-Brown..........718-287-4608
Catholic Charities (73rd St, Bay Ridge)
DAY: 2nd & 4th Wednesdays
TIME: 6:00–7:30 PM
CONTACT: Rudys Nieves......................718-680-6344
Marks Jewish Community House
(Bay Parkway)
DAY: 1st & 3rd Thursdays
TIME: 2:00–3:15 PM
CONTACT: Inna Zaslavskaya.................718-943-6380
(For all Russian-speaking caregivers)
Metropolitan Jewish Adult Day Program
(16th Ave)
TIME: 6:00–7:15 PM
CONTACT: Deborah Martinez...............718-621-8650
DAY: 1st Saturday of each month
TIME: 1:00–2:00 PM
CONTACT: Nicole Tseng.......................718-621-3600
(For all Chinese caregivers)
Sephardic Community Center
(Ocean Parkway & Ave S)
DAY: 3rd Tuesday of the month
TIME: 3:00 – 4:30 PM
CONTACT: Linda Eber..........................718-954-3154
Spouses’ & Partners’ Groups
Alzheimer’s Aging and Resource Center
(Sheepshead Bay)
2 groups
TIME: 11:00 AM–12:30 PM
TIME: 1:30–3:00 PM
CONTACT: Henni Fisher........................718-646-7001
Bedford Bay Senior Center (Sheepshead Bay)
DAY: Tuesdays
TIME: 10:00–11:30 AM
CONTACT: Tobi Abramson....................516-484-3188
Prospect Park Residence (Park Slope)
DAY: 2nd & 4th Thursdays
TIME: 3:00–4:15 PM
CONTACT: Wendy Panken....................646-744-2917
Manhattan
360 Lexington Avenue (40th & 41st Sts)
TIME: 6:30–7:30 PM
CONTACT: Gina Ghods..........................917-923-3114
Day: 1st & 3rd Tuesdays
TIME: 6:00–7:15 PM
CONTACT: Judith Gabay.......................212-475-3460
Day: 1 & 3 Thursdays
TIME: 6:00–7:15 PM
CONTACT: Judith Gabay.......................212-475-3460
st
rd
CNR Health Care Network (Prospect Place)
DAY: 2nd & 3rd Thursdays
TIME: 6:00–7:15 PM
CONTACT: Barbara Burrell.........718-362-1444 x2011
DAY: every other Friday
TIME: 12:30–1:45 PM
CONTACTS:Pat Estess.........................718-858-0918
Sophie Finkelman............718-646-2973
Long Island College Hospital (Hicks St)
TIME: 7:00–8:30 PM
CONTACT: Bonnie Weinstein...............718-834-0731
DAY: every other Monday
TIME: 6:00–7:30 PM
CONTACT: June Aronson......................212-319-6188
TIME: 12:30–1:45 PM
CONTACT: Lorraine Ruggieri.................212-362-6500
For more information, please call Sherri Partridge, Director of Volunteer
34
TIME: 6:30–8:00PM
CONTACT: Nancy Shamban..................212-242-6935
(For long-distance caregivers)
Atria (West 80s)
TIME: 7:30–8:45 PM
CONTACTS:Ruth Lippin.......................212-666-1062
Cabrini Apartments (East 19th St)
TIME: 6:15–7:30 PM
CONTACTS:Diane McKenna...............212-995-6483
Hank Weit........................212-679-7229
Cornell Medical Center/Health Outreach
(East 76th St & 1st Ave)
TIME: 6:15–7:30 PM
CONTACT: Lara Bettger........................212-746-2338
C.V. STARR (Upper East Side)
TIME: 6:00–7:30 PM
CONTACT: Ken Onaitis.................212-879-7400 x116
Jewish Community Center (West 76th St)
TIME: 6:30–8:00 PM
CONTACTS:Rita Golub.........................212-580-0037
Sunnie Kenowsky............212-371-6039
Lenox Hill Neighborhood Center (East 70th St)
DAY: Tuesdays
TIME: 6:30–8:00 PM
CONTACT: Christopher Chin......212-744-5022 x1266
St. Vincent’s Manhattan Medical Center
(West 12th St)
DAY: every other Thursday
TIME: 2:30–4:00 PM
CONTACT: Kathy Triche........................212-604-7332
Mixed Groups
DAY: 2nd & 4th Tuesdays
TIME: 6:30–7:45 PM
CONTACT: Gene Estess........................718-858-0918
TIME: 6:00–7:30 PM
CONTACT: Trish Spoto..........................212-744-5905
(For caregivers taking care of relatives in the late
stages of dementia)
TIME: 6:00–7:15 PM
CONTACT: Adeena Besdin...................212-337-9598
Susie Lang..........................917-494-3922
Abyssinian Baptist Church
(West 138th St & Adam Clayton Powell Blvd)
TIME: 6:15–7:30 PM
CONTACT: Janet Mitchell.....................917-399-6964
Atria (West 80’s)
TIME: 6:30–8:00 PM
CONTACT: Melorra Sochet...................917-532-4549
DOROT (West 85th St)
TIME: 10:00–11:30 AM
Leadership
& Development
at 646-744-2928.
CONTACT:
Reva Mager.........................212-769-2850
Health Outreach (East 76th St)
DAY: Wednesdays
TIME: 2:00–3:30 PM
DAY: Tuesdays
TIME: 6:00–7:30 PM
CONTACT: Connie Gemson...................212-746-4365
Morning Tree at Morningside Gardens
(Broadway & 124th St)
DAY: 2nd & 4th Mondays
TIME: 5:00–6:00 PM
CONTACT: Elizabeth Fine......................917-612-0467
Council Senior Center (West 72nd St)
DAY: Fridays
TIME: 12:00–1:30 PM
CONTACTS:Les Gerber........................212-873-9689
Letitia Maun.....................917-566-4068
Mixed Groups
BFFY Alzheimer’s Day Center (Flushing)
DAY: Tuesdays
TIME: 10:00–11:30 AM
CONTACT: Noreen Niles.......................718-358-3541
East 75th Street (1st & 2nd Aves)
TIME: 12:30–1:45 PM
CONTACT: Judith Young.......................212-988-1809
HANAC/The Church on the Hill
(35th Ave/Flushing)
DAY: 2nd Wednesday of the month
TIME: 2:00–3:30 PM
CONTACT: Vivian Papmichael...............718-728-3586
Educational Alliance (Grand St)
DAY: Wednesdays
Riverstone Services for the Elderly (West 163rd St) TIME: 1:30–2:30 PM
DAY: Thursdays
CONTACT: Karen Leibowitz.........212-358-8489 x305
TIME: 11:00 AM–Noon
HealthCare
Chaplaincy (East 60th St)
CONTACT: David Currier.......................212-927-5600
DAY: 2nd & 4th Wednesdays
TIME: 4:00–5:15 PM
TIME: 11:00 AM–12:00 PM
CONTACT: Reva Hoffman.....................718-548-9267
CONTACT: Carmen Nunez
(West 70’s)
JASA
(For all Spanish speaking caregivers)
TIME: 1:30–3:00 PM
S.A.G.E. (7th Ave between 27th & 28th Sts)
DAY: Mondays
CONTACT: Kristina Osorio....................212-273-5318
TIME: 1:00–2:30 PM
th
CONTACT: Catherine Thurston....212-741-2247 x227 Lenox Hill Neighborhood House (East 70 St)
DAY:
Wednesdays
(For gay & lesbian caregivers)
TIME: 11:00–12:30 PM
St. Vincent’s Manhattan M.C. (West 12th St)
CONTACT: Christopher Chin......212-744-5022 x1266
DAY: Wednesdays
TIME: 2:30–4:00 PM
CONTACT: Kathy Triche........................212-604-7332 TIME: 1:30–3:00 PM
CONTACT: Trish Spoto...............212-744-5022 x1221
Times Square Area (8th Ave & 42nd St)
NYU Medical Center (1st Ave & 31st St)
DAY: 2nd Thursday of the month
DAY: Mondays
TIME: 12:30–2:00 PM
CONTACT: Norma Loeb.........................516-857-8293 TIME: 10:00 –11:30 AM
CONTACT: Ronit Notkin........................212-263-2047
(For all Lewy Body dementia caregivers)
St. Vincent’s Manhattan Medical Center
st
rd
VA Medical Center (1 Ave & 23 St)
(West 12th St)
DAY: Tuesdays
TIME: 2:00–3:00 PM
CONTACT: Abby Miller..............212-686-7500 x3625 TIME: Noon–2:00 PM
CONTACT: Kathy Triche........................212-604-7332
Village Nursing Home (W. 12th St & Hudson Ave)
Queens
TIME: 3:45 – 5:00 PM
CONTACTS:Nancy Siegel....................212-337-9472
Daughters’ Groups
C.A.P.E./Samuel Field YM/YWHA
(Little Neck Parkway)
DAY: Tuesdays
TIME: 12:30–1:30 PM
TIME: 7:00–8:30 PM
CONTACT: Sharon Shaw.......................646-744-2932 CONTACT: Judy Scott...........................718-224-0566
DAY: 1 & 3 Wednesdays
TIME: 6:45–8:15 PM
CONTACT: Alice Moorhead..................212-861-1567
st
rd
DAY: 2 & 4 Thursdays
TIME: 6:00–7:30 PM
CONTACTS:Susan Caccappolo...........917-297-5580
nd
th
West 56 St (Broadway)
DAY: Thursdays
TIME: 12:15–1:30 PM
CONTACT: Deborah Rubin....................212-757-4202
th
Spouses & Partners’ Groups
TIME: 4:30–5:45 PM
CONTACT: Jill Goldman........................212-305-7382
(For spouses of patients with fronto-temporal
dementia and with early-onset AD)
DAY: Thursdays
TIME: 12:30–1:45 PM
CONTACT: Sharon Shaw.......................212-222-8924
Catherine Sheridan Senior Center
(Jackson Heights)
DAY: Every other Thursday
TIME: 2:30–4:00 PM
CONTACT: Licet Valois..........................646-744-2949
JASA (Far Rockaway)
TIME: 10:00 - 11:15 AM
CONTACT: Denise Wright....................718-713-3415
Kew Gardens Community House
TIME: 6:00–7:00 PM
CONTACT: Wendy Kwan..............718-592-5757 x230
DAY: 2nd & 4th Mondays
TIME: 6:00–7:00 PM
CONTACT: Bari Goltzman.............718-592-5757 x218
Queens Community House (Forest Hills)
TIME: 1:00–2:30 PM
CONTACT: Laurie Avery...............718-592-5757 x237
Queens Public Library (Jackson Heights)
TIME: 6:00–7:15 PM
CONTACT: Licet Valois V.......................646-744-2949
(For all Spanish-speaking caregivers)
Spouses & Partners’ Groups
Granat Alzheimer’s Center
Parker Jewish Institute
DAY: 1st & 4th Wednesdays
CONTACT: Martha Wolf.......................718-289-2105
Hillside Hospital Geriatric Center (Glen Oaks)
CONTACT: Barbara Vogel......................718-470-8447
Samuel Field YM/YWHA (Little Neck Parkway)
DAY: Wednesdays
TIME: Noon–1:15 PM
CONTACT: Alissa Pizzutiello........718-225-6750 x331
DAY: Tuesdays
TIME: 9:15–10:30 AM
CONTACT: Nancy Graham...........718-225-6750 x331
TIME: 12:45–1:45 PM
CONTACT: Nancy Graham...........718-225-6750 x331
Hillside Hospital Geriatric Center (Glen Oaks)
DAY: Wednesdays
TIME: 3:00–5:00 PM
CONTACT: Barbara Vogel......................718-470-8447
Self Help Clearview Senior Center (Bayside)
DAY: Tuesdays
TIME: 10:15–11:15 AM
CONTACT: Ellen Sarokin.......................718-631-1886
New Parkway Hospital (Forest Hills)
Day: every other Thursday
TIME: 7:00-8:30 PM
CONTACT:Lorraine Greenberg.............516-942-4515
SNAP Caregiver Program (Queens Village)
CONTACT: Marcia Friedland.................718-740-6519
Samuel Field YM/YWHA (Little Neck)
DAY: Tuesdays
TIME: 12:45–1:45 PM
CONTACT: Alissa Pizzutiello.......718-225-6750 x331
Sunnyside Community Services (39th St)
DAY: Tuesdays
TIME: 5:30–6:30 PM
CONTACT: Joanne Lehman..........718-784-6173 x431
TELEPHONE SUPPORT GROUPS
DOROT’s Caregivers’ Connections
CONTACT: Fran Rod..............................973-763-1511
35
New York State Budget 2009-10:
Results and Implications for Long-Term Care
O
n April 3rd, the New York State Legislature
passed the 2009-10 state budget. Although the
infusion of federal Medicaid stimulus money
from President Obama’s economic recovery plan would
have been more than enough to restore all of Governor
Paterson’s proposed Medicaid cuts to long-term healthcare,
only about 40% of those funds are being invested in health
care in the budget.
The budget will create pilot Long Term Care
Assessment Centers, authorize 6,000 assisted living
program beds and decertify 6,000 nursing home beds over
five years and create workgroups to inform new payment
methodologies for nursing homes and home care. Some
of the major cuts include elimination of 2008 and 2009
“cost of living” increases for all providers, as assessment
tax on home care providers and alterations to Medicaid
reimbursement for nursing home services.
Thankfully, there was restoration of $173 million of
nursing home cuts and $121 million of home care cuts
originally proposed by the Governor. While there is still
a substantial reduction in revenues from 2008-09, the
magnitude is much less. Given the challenging economic
and fiscal environment, these results are an achievement.
These results would not have been achieved without
the strong and sustained advocacy efforts of the long-term
care industry and the families and caregivers who depend
on them. Legislative advocacy is critical in ensuring that
providers can deliver the best quality care to their residents,
patients and clients. Throughout the budget process,
trustees, staff, residents, patients, volunteers, students as
well as family members and caregivers should all be part
of advocacy efforts. Legislators need to hear from their
constituents and your voice does make a difference. The
next time—and there will be a next time—the organization
that cares for your family member reaches out and asks
you to participate in an advocacy campaign, jump at the
chance!
Once again, long-term care facilities will examine their
programs and operations and assess ways in which they can
work more efficiently and economically in the face of this
loss of revenue. Many facilities anticipated these cuts and
reforms and were very conservative when planning for
2009-10. But if the economic situation does not improve,
Governor Paterson may call the State Legislature back to
Albany this summer to review the budget and possibly
enact more cost-cutting measures.
If this occurs, more advocacy will be needed so please
respond to your long-term care facility’s request for phone
calls, emails and letters.
The effect of the budget cuts on people with dementia
and their families will be significant. Even though our
patients are heavy users of long-term care services, they
don’t usually require complex skilled nursing tasks such
as ostomy or wound care. Our patients need supervision,
engagement and assistance with personal care. These
cuts make people with dementia even less attractive to
nursing homes, which will receive reduced payments
for “lower acuity” care. If the reduction in rates for
the “Home Attendant” program and other Medicaid
home care programs persist, it might very well threaten
the existence of the very programs that so many of our
families depend on.
We are well aware of the need to reduce spending.
However, it is imperative that the budget not be balanced
on the backs of people with Alzheimer’s disease and other
dementias: a heavily Medicaid dependent population that
is projected to grow in the next decades.
— Pat Beilman
Jewish Home Lifecare
Pat Beilman is Vice President for Public Affairs at Jewish Home Lifecare where she has been coordinating advocacy efforts for the
past 10 years.
36
Read Like a “Nutrition Expert”
W
Esther Trepal, RD, MS, CDN
Registered Dietician
God’s Love We Deliver
hen it comes to nutrition and Alzheimer’s
disease, it’s not hard to find information
from newspapers, magazines, TV and the
internet. Stories are everywhere. No, it’s not hard finding
the articles. The hard part is trying to figure out if the
information makes any sense.
This article on selenium did not specify. Food sources
are complex and include many vitamins, minerals and
other nutrients. Selenium may be powerful when in this
“food environment.” As a single supplement, it may not
be as effective. Keep this in mind before adding a selenium
supplement to your regimen.
A recent article on selenium and Alzheimer’s disease
showed that people with low selenium levels did not
perform as well on a cognitive test as people with higher
levels of selenium. Does this mean selenium can improve
a person’s ability to think and reason? Should people with
Alzheimer’s take a selenium supplement? Here are five
questions you can ask to help you separate the good stories
from the bad – and the maybes.
Question No. 4: Does the study look valid?
This is a tricky question, but using common sense,
you can come to some conclusions. For example, a test
performed with 20 people is not going to be as convincing
as one that had 2,000, as this selenium study did. Another
important point is how the study was conducted. In the
selenium example, the people had blood work done to
test their selenium and then were given a test for their
cognitive functioning. Both seem reasonable. But other
studies may not have such hard-and-fast measures. Studies
that conduct diet recalls of what someone ate in the past
are not as reliable. You might also consider the results of
the study and whether they were significant or not. In
other words, maybe the people with low selenium scored
lower on the tests, but not enough to make a difference
in their lives.
Question No. 1: Who are the subjects of the study?
Are they similar to me?
Studies done with animals or in a laboratory are the least
reliable. The results just may not be true in humans or in
real life. In the study mentioned above, the subjects were
people 65 years and older and lived in a rural community
in China. What is your ethnicity? Do you live in a rural,
suburban or urban area? What country do you live in?
How old are you? Other important questions are: Were
these men or women? Did they have any other serious
medical problems? Were the ages distributed evenly or
were they skewed to the lower or upper end of the age
range? An older age group would likely not perform as
well on a cognitive test.
Question No. 2: What was the goal of the study?
How does it apply to me?
The researchers wanted to see if people with low
selenium levels had a lower ability to perform cognitively.
Notice that the study didn’t answer the question of
whether low selenium caused the cognitive decline. Maybe
there is something else in foods that made the difference.
Or maybe people who eat foods high in selenium have a
different lifestyle that caused the difference.
Question No. 3: Were the nutrients obtained from
food or supplements?
Question No. 5: How do the conclusions of the study
stack up against similar studies?
One scientific study does not provide all the answers.
It is helpful to keep notes on what you read and then
compare. Over time, you will see if a trend is developing
and which way it is going.
Conclusion: Reader beware! Information you read
in the general press might be overstated and not describe
the nuances of clinical trials or observational studies. The
press tends to simplify and exaggerate the findings of studies
to make good headlines. And your mother’s warning, “If
it’s too good to be true, then it is probably so,” holds true
here as well. Do your homework, learn how to read the
results of a study and call the Alzheimer’s Association if you
have any questions about claims for a food or supplement
preventing, treating or curing Alzheimer’s disease or other
dementias.
This is the 13th in a series of articles on the nutritional and feeding needs of persons with AD.
GLWD is a non-profit agency in NYC that provides meals to men, women and children affected by HIV/AIDS, cancer, AD and many other serious
illnesses who are unable to shop or prepare meals for themselves. Experienced nutritionists provide nutrition education, information and counseling in
individual and group sessions to clients, their caregivers and other service providers. In partnership with GLWD, the NYC Chapter is pleased to offer this
service to people with dementia and their families. For more information, please call our 24-hour Helpline at 800-272-3900. For individualized nutrition
information, GLWD’s nutrition department can be reached at 212-294-8103, 1-800-747-2023 or www.glwd.org.
37
A Family Caregiver’s Guide to the ER
T
hroughout its 15 years on TV, Michael was a big fan of “ER.” But when his mother, Shirley,
recently diagnosed with Alzheimer’s disease, fell in her bathroom, he didn’t know what to
do. Should he call 911? Should he take her to the Emergency Room on his own? Which
one? What should he bring to the ER? Once there, what should he expect?
ERs — or Emergency Departments, as some are called — are often chaotic places. To learn how
to get your family member the right care, “Emergency Room (ER) Visits: A Family Caregiver’s
Guide” is a good place to start. One of the 16 family caregiver tools in English and Spanish on the
United Hospital Fund’s Next Step in Care Web site (www.nextstepincare.org), this guide takes
you step by step through the ER process. “It tells you what to bring and what not to bring, and
explains the various staff members and their roles. Equally important, it offers advice about how to
avoid an unnecessary ER visit,” said Carol Levine, director of the Fund’s Families and Health Care
Project, which created the Web site and guides.
For people with dementia, probably the most common reason for an ER visit is an accident or
trauma, or a sudden complication of another chronic illness. Although it’s difficult to anticipate such
events, understanding some key points should help:
•If you call 911, be prepared to answer the operator’s questions about the patient’s condition.
• You can ask the ambulance’s Emergency Medical Technicians (EMTs) to take the patient to your
preferred hospital, but they may not be able to comply. If the emergency is life-threatening, they
will go to the nearest ER.
•In anticipation of an eventual crisis, assemble a Hospital Emergency Kit, which should at a
minimum include copies of your family member’s health insurance card and identification, an
up-to-date list of medications, personal health record, health care proxy, and advance directives.
The guide provides a complete list of items to include.
•In the ER, after (or sometimes before) registration, a triage nurse will decide whether your family member needs immediate treatment or can wait.
•Make sure that everyone who talks to your family member understands his or her memory or
behavior problems. Explain that you are the family caregiver will help them get the information they need. Don’t be put off by references to HIPAA (the federal privacy law). This law
should not be used to inhibit conversations between you and medical staff about your family
member’s care.
You will undoubtedly spend a lot of time waiting. Several people will ask questions, take your
family member’s medical history, order tests, wait for the results, and then decide what to do. While
you are waiting,
•Try to be patient, and keep your family member as calm as possible.
•Don’t leave your family member alone; explain why you are needed to the doctor or nurse.
•Ask for periodic updates from the nurse.
•When the ER visit is finally over, make sure you receive and understand follow-up instructions.
Remember Michael? He made the right decision and called 911. Shirley withstood the experience
well, and he learned that making preparations before a crisis is well worth the effort.
For more information, please visit www.nextstepincare.org.
38
V
ascular dementia is widely
considered the second most
common type of dementia. It
develops when impaired blood
flow to parts of the brain deprives
cells of food and oxygen.
The diagnosis may be clearest
when symptoms appear soon after
a single major stroke blocks a large
blood vessel and disrupts the blood
supply to a significant portion of the
brain. This situation is sometimes
called “post-stroke dementia.”
Symptoms
◾ Memory problems may or may not be a prominent symptom, depending
on whether brain regions important in memory are affected.
◾ Confusion, which may get worse at night.
◾ Difficulty concentrating, planning, communicating and following instructions.
◾ Reduced ability to carry out daily activities.
◾ Physical symptoms associated with strokes, such as sudden weakness,
difficulty speaking or confusion.
◾ Magnetic resonance imaging (MRI) of the brain may show characteristic
abnormalities associated with vascular damage.
Treatment
There is also a form in which
a series of very small strokes, or
infarcts, block small blood vessels.
Individually, these strokes do not
cause major symptoms, but over
time their combined effect becomes
noticeable. This type used to be
called “multi-infarct dementia.”
■Because vascular dementia is closely tied to diseases of the heart and blood
vessels, many experts consider it the most potentially treatable form.
Symptoms of vascular dementia
can vary, depending on the specific
brain areas deprived of blood.
Impairment may occur in “steps,”
where there is a fairly sudden,
noticeable change in function,
rather than the slow, steady decline
usually seen in Alzheimer’s disease.
■No drugs have been approved by the US Food and Drug Administration (FDA)
to treat vascular dementia.
The person may have a past
history of heart attacks. High blood
pressure, high cholesterol, hardening
of the arteries, diabetes, or other
risk factors for heart disease are
often present.
■Monitoring of blood pressure, weight, blood sugar and cholesterol should
begin early in life. Managing these risk factors, avoiding smoking and
excess alcohol, and treating underlying diseases of the heart and blood vessels could play a major role in preventing later cognitive decline for many individuals. In some cases, active management of these factors in older adults
who develop vascular dementia may help symptoms from getting worse.
More Information
■Alzheimer’s Society, United Kingdom: Vascular Dementia
www.alzheimers.org.uk
Vascular dementia resources from the UK Alzheimer’s Society, including an
information sheet on “What is vascular dementia?” and an 18-page booklet
on “Understanding vascular dementia.”
■Medline Plus: Multi-Infarct Dementia
www.nlm.nih.gov/medline
Medline Plus is a consumer health information service of the U.S. National
Library of Medicine and National Institutes of Health (NIH). This Medline
Plus encyclopedia article provides basic information about symptoms,
causes and treatment of the disorder.
39
To read the articles below in their entirety, please
visit www.alznyc.org/newsletter
When Should Alzheimer’s Patients Stop Driving?
Researchers creating tests to help determine when
to hand over the keys
April 6, 2009, Washington (Associated Press) — Scientists
are creating tests to show when it’s time for people with
early Alzheimer’s disease to stop driving.
It’s one of a family’s most wrenching decisions, and as
Alzheimer’s increasingly is diagnosed in its earliest stages, it
can be hard to tell when a loved one is poised to become
a danger.
Factor in that much of the country lacks public transportation, and quitting too soon restricts independence for
someone who otherwise may function well for several years.
“That’s a real cost to the individual and family and
society,” says Jeffrey Dawson of the University of Iowa.
“You have to have some sort of trade-off between the
individual’s independence along with the safety of the
driver and with other people on the road.”
Typically, specialists say, patients gradually scale back
their driving, avoiding busy freeways or night trips or leftturn intersections. Alzheimer’s Association adviser Sue
Pinder, 58, recently gave up big-city driving even though it
meant fewer visits to a daughter in Dallas.
Shortly after Pinder’s diagnosis in 2004, she signed a
form designating her husband to decide when she’ll quit
driving altogether. He gave her a GPS system for her last
birthday. It helped Pinder navigate unfamiliar streets when,
to be near another daughter, the couple recently moved to
West Monroe, La., from a nearby town.
“That’s helped a lot where I don’t have to worry, I can
concentrate on my driving and not the directions,” Pinder says.
The road test
Working on ways to help similar patients, Dawson’s team
in Iowa developed an intricate behind-the-wheel exam: A
35-mile drive through rural, residential and urban streets in
a tricked-out Ford Taurus able to record just about every
action the driver takes, much like an airplane “black box”
does. Lipstick-size video cameras were positioned to show
oncoming traffic, too.
Researchers recruited 40 people with early-stage
Alzheimer’s who still had their driver’s licenses to take the
road test, and compared how 115 older drivers without
40
dementia handled the same trip.
The results, reported in the journal Neurology, are
striking. On average, the Alzheimer’s drivers committed 42
safety mistakes, compared with 33 for the other drivers.
Lane violations, such as swerving or hugging the center
line as another car approaches, were the biggest problem for
the Alzheimer’s drivers. They performed 50 percent worse.
Overall errors rose with increasing age whether or not
the driver had Alzheimer’s, an extra 2½ mistakes for every
five years of age.
But some Alzheimer’s patients drove just as well as
their healthier counterparts, stresses Dawson, a biostatistics
professor. Here’s the key: Researchers also checked whether
any of a battery of neuropsychological tests given beforehand
accurately predicted who would drive worse — and some did.
Multitasking skills
Flunking simple memory tests didn’t make a difference.
Standard neurologic tests of multitasking abilities did, ones
that assess if people’s cognitive, visual and motor skills work
together in a way to make quick decisions. Examples include
showing patients geometric figures for a few seconds and
having them draw the shape from memory, or drawing
paths between a sequence of numbers and letters.
Alzheimer’s patients who scored average or better on
those types of written tests were likewise no worse behind
the wheel than other older drivers — but those who scored
worse than average tended to commit about 50 percent
more errors on the road, Dawson says.
More research is needed but the ultimate goal is an easy
doctor’s-office exam to help guide when patients should
give up the keys.
But as Alzheimer’s worsens, patients often vehemently
deny that they’re a hazard, says Dr. Gary Kennedy, geriatric
psychiatry chief at New York’s Montefiore Medical Center.
“I can be the bad guy,” he tells families, sometimes
reporting patients to the Department of Motor Vehicles for
a driving test or advising relatives to disable the car.
“Giving up the car is not like going into the nursing
home,” Kennedy counsels patients, trying to recruit relatives
or friends to schedule rides. “If as a society we recognize
this as a danger, we need to help them compensate.”
Free Drug Discount Card Offered by New York State
lowered dementia risk.
4/17/2009, NewYork Prescription Saver — Hit hard by the
economic downturn? Looking for relief from paying the full
cost of your prescription drugs? New York State announces
the NewYork Prescription Saver, a free prescription discount
card that will help save on the cost of prescription drugs. The
card is for New York State residents who are 50 to 64 years
old, or persons with a disability regardless of age. Income
eligibility limits are up to $35,000 single and $50,000
married. Those with Medicaid coverage are not eligible.
“We have years and years of drug exposure data that
was extremely accurate. We did not expect these findings,”
Larson says.
Visit https://nyprescriptionsaver.fhsc.com for more information.
Anti-inflammatory Drugs Don’t Cut Dementia Risk,
They Raise It
By Mary Brophy Marcus
April 27, 2009, USA TODAY — Millions of people
who use non-steroidal anti-inflammatory drugs (NSAIDs),
such as naproxen and ibuprofen, shouldn’t bank on the
drugs helping them ward off dementia.
A study in this week’s Neurology suggests that NSAID
users do not have lower rates of dementia and that increased
use of the pain relievers may actually raise the risk of
cognitive decline.
Duke aging expert Murali Doraiswamy says that the
latest results aren’t a revelation to him and that previous
trials evaluating Vioxx, aspirin and prednisone, among
other anti-inflammatory medications, did not show
reduced risks cognitive decline. “Any benefits noted in
prior studies were likely due to an epiphenomenon — the
people taking NSAIDS were younger, healthier and better
educated, all of which biased the results.”
The study doesn’t disprove the theory that inflammation
is a factor in Alzheimer’s, though, says Jason Karlawish,
associate director of the Penn Memory Center at the
University of Pennsylvania. “Negative studies like this that
fail to prove the hypothesis leave thousands of questions to
be answered,” Karlawish says.
The new data highlight the need for early detection
and better biomarkers, says Alzheimer’s Association vice
president Bill Thies. “If you could tell who’s going to need
dementia drugs at age 40 and study them, you may have a
totally different result.”
“We had high hopes that these non-steroidal arthritis
drugs might play a role, in part because other studies had
been promising,” says study author Eric Larson, executive
director of Group Health Center for Health Studies, a
Seattle-based HMO.
Early Alzheimer’s Diagnosis Reduces Costs
Researchers followed 2,736 members of Group
Health who were an average age of 75 at the study’s
start. Participants were tracked for 12 years to see if
they developed dementia, including Alzheimer’s disease.
Participants’ pharmacy records were evaluated for use of
prescription and over-the-counter pain relievers, and they
were questioned about their NSAID use as well.
“The future of this disease is to intervene decades
before someone becomes symptomatic. This analysis says
you can save literally billions of dollars in long-term care
costs if you can intervene at an earlier stage,” study coauthor David Weimer of the La Follette School of Public
Affairs said in a statement. “What you don’t know costs a
lot of money when it comes to this disease.”
Results showed 351 people had a history of heavy
NSAID use at the study’s start, while 107 people became
heavy users during the follow-up period. Heavy users
took at least one NSAID a day for at least 16 months of a
two-year period.
The researchers analyzed two types of interventions
following diagnosis — patient drug treatment and caregiversupport programs.
During the study, 476 people developed dementia, and
heavy NSAID users had a 66% higher risk of developing
the condition than those with low or no use.
Larson says he was surprised at the outcome because
inflammation is thought to play a role in dementia and
because other studies suggested anti-inflammatory pills
May 25, Madison, Wis. (UPI) — The way to fight
Alzheimer’s disease is to intervene decades before someone
demonstrates symptoms, U.S. researchers suggest.
The study, published in Alzheimer’s & Dementia: The
Journal of the Alzheimer’s Association, found each intervention
provides positive net savings, with the greatest benefits
achieved using a combination of both.
Currently, Medicare does not support caregiver-intervention programs and even accounting for implementation
costs, the analysis suggests it would result in net savings to
governments by reducing the care burden on medical systems.
41
S
hining a spotlight on how the Chapter helps families
here in NewYork City is part of the important work
we do. Raising awareness in a variety of mediums
illustrates how our programs and services directly affect
individuals with the disease, their family members and
caregivers, and how vital our work is in the everyday lives
of those dealing with Alzheimer’s disease. The work of the
Chapter has been highlighted in several media outlets.
The Chapter was enormously proud when, in
February, our support group leaders were named “New
Yorkers of the Week” by New York 1. The piece, which
ran all weekend long, included interviews with Jed Levine,
the Chapter’s executive vice president and director of
programs and services; Elana Sinsabaugh, caregiver and
support group member; as well as support group leader
Sophie Finkelman. This is a well-deserved accolade.
Lou-Ellen Barkan, Chapter president and CEO was
recently quoted in a story about clinical trials in The Staten
Island Advance that also included new facts and figures
released by the Alzheimer’s Association. You may have
also heard Jed on Q104.3 this past January as he spoke on
Sonsetin Sunday about the services the Chapter provides
Alzheimer’s in the News continued from page 41
The Wisconsin Medicaid program spends almost $500
million each year on nursing home care for 11,000 dementia
patients — a tiny fraction of the estimated 160,000 affected
people in the state, but caregiver support is sparse, Mark
Sager of the University of Wisconsin-Madison School of
Medicine and Public Health said.
Low Blood Sugar a Dementia Risk for Diabetics
Severe low blood sugar episodes affect brain health
• Balanced approach to diabetes control best
By Julie Steenhuysen, April 14, 2009, Chicago (Reuters)
— Older diabetics whose blood sugar drops to dangerously
low levels have a higher risk of developing dementia, U.S.
researchers said on Tuesday.
The study by researchers at Kaiser Permanente in
Oakland, California, suggests that aggressive blood sugar
control resulting in blood sugar so low it requires a trip to
the hospital may increase dementia risks in older adults with
type 2 diabetes.
families dealing with Alzheimer’s disease. In addition,
he was interviewed about the proposed budget cut for
Medicaid home care programs by The Riverdale Press this
March.
Peter Eldridge of New York Voices was interviewed on
WBGO about the April 22nd jazz benefit concert, “For
Those We Love.” The Chapter has also been included
in important calendars throughout the city about the jazz
concert and “Stella Rising,” both benefitting the Chapter,
in addition to the 9th Annual Early-Stage Memory
Disorders Forum and the 2009 “Forget-Me-Not” Gala.
As always, the Chapter’s invaluable support groups are
routinely covered in local community papers across the
City and Jed’s “Ask the Alzheimer’s Expert” column can
be seen in The Queens Courier. If you have a question,
please send it to Jed at [email protected].
Lou-Ellen Barkan said, “The more people hear the
stories we have to tell, the more people we can help.”
Colleen Roche, Managing Director
—
Linden, Alschuler & Kaplan, Inc., Public Relations
“We know that having blood sugar that is too high
is not good,” Rachel Whitmer, a Kaiser research scientist
whose study appears in the Journal of the American Medical
Association, said in a telephone interview.
“You want to keep that blood sugar at a good level, but
you don’t want to go too low,” she said.
Several studies have found that diabetics have a higher
risk of developing Alzheimer’s disease — the most common
form of dementia — than do the general population. And
others have shown that diabetics who take insulin and pills
to help control their disease have a lower Alzheimer’s risk.
“The very current issue here is balance of blood sugar
control,” Whitmer said. She said a number of things such as a missed meal can
cause severe low blood sugar in diabetics, but the chief
cause is too much insulin, which can happen in people who
take insulin injections or with oral diabetes drugs such as
sulfanylureas or glimepiride that cause the body to make
more insulin.
To read the entire article, visit www.alznyc.org/newsletter.
42
New Volunteer Phone Bank
T
ouching on the theme of this quarter’s newsletter, it is clear that the economy is on
everyone’s mind. This is why we have begun a new volunteer project — a phone bank.
We have started to have volunteers call individual donors to simply say, “Thank you.”
We want to make sure that our donors know how much we appreciate their support in this
tough time, and to also offer our support to them. Since February we have had three successful
phone bank sessions, with 825 donors called and 245 donors reached. We feel that this is a very
important project and we will continue this every month.
Interested in Volunteering? Check out our Opportunities Below!
Upcoming Special Events:
Thursday, July 9th — Alzheimer’s Awareness Day at Citi Field — Volunteers needed to help
‘man’ tables and pass out brochures and purple bracelets.
Sunday, August 9th — Memory Walk 2009 with the Brooklyn Cyclones at KeySpan Park
— Please join us for our 1st Memory Walk in Brooklyn! Volunteers needed to help with set-up,
registration, clean-up, poster and brochure distribution, and community/corporate outreach.
Thursday, September 3rd – Alzheimer’s Awareness Day with the Staten Island Yankees
— Volunteers needed to help ‘man’ tables and pass out brochures and purple bracelets.
Christina Keller
Director, Volunteer
Leadership & Development
[email protected]
Sunday, October 25th – Memory Walk 2009 at Riverside Park — Volunteers needed to
help with set-up, registration, food distribution, clean-up, poster and brochure distribution, and
community/corporate outreach.
Health Fairs: “Man” an Alzheimer’s Association, NYC Chapter table at Health Fairs. Answer
basic questions on Alzheimer’s disease to senior groups, corporate offices, community centers,
and schools. Volunteer training is provided by the Alzheimer’s Association. English and Bilingual Spanish or Chinese volunteers needed.
Translation Services: Translate
written materials, such as newsletters, Web site stories, and various letters and informational
packets from English to Spanish, Chinese or Russian.
Speakers Bureau: Make presentations about Alzheimer’s disease to senior groups or
community centers. Volunteer training is provided by the Alzheimer’s Association. English and
Bi-lingual Spanish or Chinese volunteers needed.
Volunteer Phone Bank: Help us provide personal “thank you” calls to those who have
donated to the Alzheimer’s Association. Volunteers will be trained and provided with scripts.
Volunteers must be comfortable making phone calls.
If you or someone you know is interested in volunteering, please feel free to contact me at 646-744-2928
or by e-mail.
43
Health Fair Season Kicks Off
A
s summer commences, so does the busy season for citywide health and
wellness fairs. We have, as usual, been receiving countless requests for our
organization’s presence at these fairs, and we make every effort to get
out to as many as possible. The fairs are a fun, interactive way for our volunteers
to interface with members of the community and to educate others about
Alzheimer’s disease. They aid us in creating and maintaining a local presence in
communities throughout each of the five boroughs, and they are integral to our
outreach efforts.
Caitlyn Smith
Outreach Associate
[email protected]
With the increased demand for our attendance at these fairs and given how
important the fairs are to our educational goals, we must supply more volunteers
for more events. We can always use more health fair volunteers! If you are
interested in working with us to fight Alzheimer’s disease and learning what you
can do to help, please contact Christina Keller, Director of Volunteer Leadership
and Development, at [email protected].
O
ur Women In Action committee, a dynamic group
of women who raise awareness and money for
the Alzheimer’s Association, NYC Chapter, was
instrumental in making our 2009 “Forget-Me-Not” Gala a huge
success!
With tremendous energy and zeal, Women In Action members
secured a record-breaking number of fabulous auction items, all
donated by individuals and companies supporting our work.
Women In Action events include dinner dance galas, luncheons,
and Broadway benefit performances, affording our members the
pleasure of varied social and cultural experiences.
If you are interested in learning more about Women In Action,
please contact Susan Sugarman,Vice President, Director of
Marketing, Communications & Events at 646-744-2906 or
[email protected].
44
O
n May 7th, President Meghann McKale, Vice
President Christina Cohen, Event Chair
Scott Chabina, and members of the Junior
Committee (JC) welcomed over 300 young professionals,
activists, and philanthropists to our 7th Annual Spring Gala,
Collective Consciousness.
We were joined by Elisabeth Hasselbeck, one of the
hosts of ABC’s popular talk show The View and a longtime Alzheimer’s advocate, who took time out of her
busy schedule to serve as the Gala’s Honorary Chair. Ms.
Hasselbeck presided over a
festive evening that featured
music by DJ Berrie, a resident
DJ at major clubs around
the country, a Consciousness
cocktail, and memorial flower
arrangements that guests
had purchased in memory
of loved ones. Author Lisa
Genova also attended the
gala and signed copies of
her bestselling book Still
Alice. All proceeds from the
d
Meghann McKale an
gala will go to benefit the
Elisabeth Hasselbeck
NYC Chapter. For more
information and pictures of the event,
please visit www.alznycjc.org.
Members of the JC, including Meghann McKale,
former Community Service Chair Kim Rossi, Jeff
LeBlanc and Kristen Czenszak, also attended the 21st
annual Alzheimer’s Association Public Policy Forum,
which was held in Washington, D.C. They joined
advocates from across the country to attend a Senate
Special Committee on Aging hearing, where former
Speaker Newt Gingrich, former Supreme Court Justice
Sandra Day O’Connor, whose husband suffers from
Alzheimer’s, Maria Shriver, whose father Sargent Shriver
also suffers from the disease, and former Senator Bob
Kerrey presented a special report on Alzheimer’s disease
and its varied costs to Congress. The JC members also
met with their local representatives to discuss how
Scott Chabina, Meghann McKale, Lou-Ellen Barkan, amd
Christina Cohen
Alzheimer’s disease can affect young people and to
advocate for greater funding for research.
Finally, the JC is maintaining our active volunteer
schedule. Under the direction JC Community Service
Chair Jessica Meksavan, the JC has been making regular
JC members having fun visiting residents at Jewish Home Lifecare
visits to the Jewish Home Lifecare in Manhattan, playing
games and working on puzzles with the residents who
suffer from Alzheimer’s. We decided that the residents
might enjoy some more activity and, on April 26th, we
presented them with a Wii console that was purchased
with funds raised at the JC’s Winter Wii Happy Hour.
We hope that this is the first of many Wiis we are able to
donate to nursing homes around the city.
— Hannah Major-Monfried
Junior Committee Chapter Liaison
The Junior Committee meets on the second Tuesday of each month at 6:45 pm at the NYC Chapter office. For more information on
what we do or to join our mailing list, please visit www.alznycjc.org or e-mail [email protected].
45
Checks
Please make checks payable to the Alzheimer’s Association,
New York City Chapter and mail to:
Alzheimer’s Association, New York City Chapter
360 Lexington Avenue, 4th Floor
New York, NY 10017
For your convenience, a self-addressed postage paid envelope
had been provided in this newsletter.
Credit Card
Visit www.alznyc.org and click on Make a Donation.
We accept MasterCard, Visa and American Express.
Please be assured we have a secure server.
You may also make a credit card gift by calling 646-744-2908 or 2910.
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 all those affected by Alzheimer’s disease. Your bequest may
have estate tax planning benefits as well.
Here is sample bequest information you can take to your attorney:
I, ____________________(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) for
its unrestricted use and purpose.
Vehicle Donations
Cars, truck, motorcycles and recreational vehicles are gladly accepted throughout
the United States. Even if your vehicle will not start, we may accept it. To start the
donation process, please contact Sandra Martinez at 646-744-2908 or by e-mail at
[email protected].
Life Insurance and Retirement Plans
You may also choose to remember the Alzheimer’s Association, New York
City Chapter by naming the Chapter the beneficiary of your Retirement Plan
or Insurance Policy.
Tribute Gifts
Gifts to the Alzheimer’s Association, New York City Chapter 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 through an employee contribution program
(please remember to designate the Alzheimer’s Association,
New York City Chapter on your campaign form)
⦁ Matching gifts
⦁ Sponsorship of Memory Walk
⦁ Forming a Memory Walk Corporate Team
⦁ Support of our “Forget-Me-Not” Gala
⦁ Volunteering (your company may have a special contributions
program available for volunteers)
46
NAMING OPPORTUNITIES PROGRAM
A way to recognize donors who wish to honor and pay tribute to a loved one.
Below are selected naming opportunities:
Reception, Welcome Area and Main Lobby
$500,000
Board Room/Conference CenterNamed
24-hour Helpline CenterNamed
Program Centers
(Safe Return Center; Training and Education Center;
Diversity and Outreach Center; Support Group Center;
Care Consultation Center; Early Stage Center; Volunteer Center)
$250,000/each
Public Policy Department
$100,000
IT Department
$100,000
Marketing and Communications Department
$100,000
The Bistro
$100,000
Executive Vice-President
$100,000
Program Directors/Managers
$50,000 - $75,000/each
(Training and Education Director; Public Policy
Director; Helpline & Care Consultation Director;
Early Stage Services Director; Care Consultants; Diversity
and Outreach; African-American Outreach Manager;
Latino Outreach Manager; Volunteer Director; IT Manager)
Resource Areas
(Administration; Helpline; Reception)
$50,000/each
Program Workstations
(Helpline; Safe Return; Training and Education)
$25,000/each
Rotation Exhibitions
Main Lobby (elevator area)
$50,000/exhibition
Initial InstallationNamed
Board Room/Conference Room
$25,000/exhibition
Public Areas
$25,000/exhibition
Support Group Chairs
$10,000/each
Training Center Chairs
$10,000/each
Please contact Carol Berne, Vice President, Leadership Giving, at
646-744-2905 or [email protected] if you would like additional
information about these gift opportunities.
The Alzheimer’s Association, 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.
I am hoping that when you read this
newsletter the economic picture has
brightened. As our President and CEO notes
on page 3, like many charities, our Chapter
has been affected by the economy. However,
this has not prevented us from carrying out
our essential programs and services. And
equally important, it has not prevented us
from seeking support in creative ways.
What I want to focus on is that despite the
challenging economic environment, the New
York City Chapter continues to be a vital safety
net for New Yorkers affected by Alzheimer’s
disease and related dementias. There has been
a dramatic increase in the number of calls to
our 24-hour Helpline; there is a “wait list”
for Family Caregiver Workshops designed to
teach family members coping skills and how
to manage the challenging behaviors associated
with dementia; our seminars on legal and
financial planning, Medicaid home care, and
research updates are filled to capacity. We have
just about outgrown the space we moved into
just 2 ½ two years ago. How can we not move
forward successfully?
Equally important is the dedication of
staff responsible for ensuring and sustaining
quality programming. Our care consultants
knowledgeably counsel a family, not just once,
but through the long duration of this terrible
disease. They make sure that families receive
the care that they deserve. Our MedicAlert +
Safe Return staff present, often after hours, our
Medic Alert + Safe Return program to social
service agencies, community organizations
and our own NYPD to ensure that persons
with dementia who wander are found safely.
And, our Early Stage Services Director has
developed two new programs this year to
engage persons in the early stage in social and
cognitively stimulating activities and provide
new avenues of support and education for
their family members.
Like many development professionals, I read
financial reports and follow funding trends.
While this is a very challenging time, experts
suggest that those non-profits that survive
will 1) have a diversified revenue stream and
a variety of opportunities to give; 2) engage
leadership that is prepared to address and adapt
to changes in the coming year and 3) have
built solid and longstanding relationships with
donors and friends.
Carol Berne
Vice President,
Leadership Giving
[email protected]
I believe that our Chapter has the expertise
to safely see us through this storm. For those
who have met Lou-Ellen Barkan and our
Trustees, you know that the organization
is in very good hands; run cost-effectively
and managed for stability. And for those of
you who know Jed Levine and members of
the program staff, you know that you have
been wisely counseled by a compassionate,
committed and knowledgeable team. And, I
know that our friends, both old and new, will
step up and support our work so that no one
will face Alzheimer’s disease alone.
As you know, our programs and services
are provided without charge. As always, please
contact me if you would like to make a gift, or
need further information. And thank you, as
always, for your help.
47
O
n February 25, 2009, the NYC Chapter
continued its series of evening programs
entitled “The Next Generation.” Board CoChair Heath McLendon and his wife Judy welcomed
guests to their home to hear from scientists engaged in
cutting-edge Alzheimer’s research.
The presenting scientists were Mary Sano, PhD,
Professor of Psychiatry and Director of the Alzheimer’s
Disease Research Center at Mount Sinai School of
Medicine, and her colleague, Hillel Grossman, MD, CoDirector of the Clinical Core of the Alzheimer’s Disease
Research Center at Mount Sinai School of Medicine
and the Clinical Director of Mount Sinai Memory and
Aging Center.
A lively reception preceded a welcome by Heath
McLendon and an introduction by Lou-Ellen Barkan,
Chapter President and CEO. Drs. Sano and Grossman
then presented “Developing New Treatments for
Alzheimer’s Disease,” a thorough discussion of how
new drugs are created; how clinical trials proceed
— knowing what to test for, safety, methodology and
steps in evaluation; Alzheimer’s disease treatments today
— including symptomatic treatments, cholinesterase
inhibitors (Aricept, Exelon, Razadyne), a glutamate
regulator (Namenda), and vitamins; and what we can
expect tomorrow — there are 600
compounds in clinical investigation
now.
Lou-Ellen Barkan,, Bonnie Pfeifer Evans and Carol Berne
Paul Tumpowsky, Jeffrey Asher, and
Board Co-Chair Heath McLendon
The scientists also addressed
the question of what one can do
to minimize cognitive impairment:
treat treatable conditions, keep
informed, support research by
participating in trials and encourage
others to do the same.
Heath McLendon, Lou-Ellen Barkan, Judy McLendon, Dr. Mary Sano,
Dr. Hillel Grossman and Jed Levine
If you would like to attend an upcoming event, please contact Karen Holland, Development Associate at 646-744-2926 or
[email protected].
48
HFTP “Tees off” in Support of
NYC’s Alzheimer’s Community
Ken Rabb and
Stuart Post
A public interest attorney, Ken Rabb’s life was
turned upside down seven years ago when he was
diagnosed with young-onset Alzheimer’s at the age
of 52. This rare form of the disease accounts for up
to 10 % of Alzheimer’s cases and affects people under
the age of 65.
Now in the mid-stages of the disease and six years
after his diagnosis Ken — once an amateur artist —
has turned what used to be a hobby into a flourishing
full-time endeavor. He even exhibited his work in a
local Harlem café, Tanto Dulce, with sales benefitting
the NYC Chapter. Ken and his partner, Stuart Post,
have donated over $500 from the sale and support of
his work.
Ken’s artistic process, which was once belabored
with technical precision, has developed into one
that is more organic, free and creative. His exhibit
comprised nearly 40 pieces—from wall paintings to
hand painted Chinese soup bowls.
Stuart has been a long-time Chapter supporter and
Memory Walk top fundraiser several times running. He
recalls when Ken was an intensely intellectual person.
Now his art gives him reason to smile often.
For the 4th consecutive year, the NYC Chapter has been the fortunate
beneficiary of the Hospitality Financial Technology Professionals, NYC
Chapter’s annual Charity Golf Tournament. On September 16, 2008,
union members, supporters and avid golfers spent another glorious day
at The Saint Andrews Golf Club in Hastings-on-Hudson. At the
conclusion of the tournament, with smiling faces filling the clubhouse,
golfers and supporters shared cocktails and dinner while raising additional
money for the Chapter during a silent auction and raffle.
On January 27, 2009, Susan Sugarman, Vice-President, Director of
Marketing, Communications & Events, joined the membership at their
monthly meeting and was presented with a “huge” check — literally &
figuratively — for $23,000. We are sincerely grateful to HFTP of NYC
for its continued support of our NYC community affected by Alzheimer’s
disease and other dementias. We look forward to continued partnerships
in 2009.
Stuart has been very creative and sensitive in designing Rabb’s home care. He didn’t simply
want an aide. A unique part of Ken’s experience is his relationship with Jane Hart, his paid
caregiver. Jane’s interest in his artwork mirrored the
close-knit relationship the two have come to share
over the past two years. According to Jane, “Stuart
uses the word ‘peer,’ someone who goes to museums,
who reads books like Kenny read when he read
books.” Jane considers her work with Ken among
the most rewarding things she has ever done and has
been more than happy to step into the role of “studio
assistant.” Ken continues to be healthy and robust, so
he and Jane can spend hours exploring the city, going
to all five boroughs.
Stuart knows that despite his best efforts, there is
going to come a time soon where he can’t change the situation. “I can’t hug Ken and say
everything will be all right. Everything is not going to be all right.” But for now, they are all
enjoying life one day at a time.
49
Carl Stith
Mr. Dimitri B. Smaragdas
Mrs. Betty Bock
Mr. Albert Matican and Family
Horace Booker’s Wife
Mr. Horace Booker
Mrs. Olga Stonehill
Marc Nakdai
Ms. Belle Calderon
Ms. Rita Calderon
Joseph Tobin
Ms. Margaret Tobin
Gillian A. Davis
Anonymous Donor
Ms. Hilary Van Norstrand
Ms. Maureen A. Constable
Mr. Leonard Boxer
Mr. and Mrs. Alan Helene
Allan and Arlene Lazare
Mr. Robert Rich
Mr. and Mrs. Jeffrey Schwartz
Mrs. Carol Farrell
Mr. and Mrs. Joseph Marino
Essie Winston’s Husband
Ms. Essie B. Winston
Mr. Donald Braithwaite
The staff of the Hunter College
Libraries
Petronila Fortunato
Laureano Fortunato
Milton Wolff
Ms. Lesley D. Adler
Ms. Ruth Braunstein
Ms. Susan Braunstein
Mr. & Mrs. B. Freidus
Fred and Emilie
Martin and Grace Soloway
Melvin and Lois Gelfarb
Marvin and Rochelle Lipkowitz
Jean Gibbs
Ms. Cindy G Doonan
Mr. Norton Goodman
Sylvia and Milton Cohen
Ms. Pauline Hall
Ms. Mary Alice Brodie
Ms. Florence Harmon
UBS Foundation USA
Mrs. Sandy Hoffman
H. M. Brenner
Kathy and Aaron Siegel
Ms. Judith Weissman
Mrs. Josephine Jantzen
Mr. Fred J. Jantzen
Mrs. Selma Katy
Ms. Sandy Blass
Mr. David Kuperberg
Goldberg Weprin Finkel Goldstein LLP
Anne A. Lawton
Kelly Anastos
Ms. Denise Le Boucher
The Executive Committee of the
Board of Management of
The Century Association
Mr. John E. Lehman
Lois & Marvin Broder
Ms. Kate Mulgrew
Ms. Christina J. Limbach
Ms. Rose Pellani
Ms. Meredith Bernstein
Mr. David Hyde Pierce
Ms. Teressa Esposito
Mr. Rupert Holmes
Ms. Beverly Poyerd
Ms. Diane Siegel
Mrs. Anna Quadrino
Mr. Bill Russo
Mr. Kenneth B. Rabb
Mr. Abraham Clott
Ms. Margaret M. Flint
Mrs. Marcia E. Langford
Ms. Diane H. Pazar
Mr. Aaron Spolin
Cynthia Marsland Zinser
Mr. Ira Resnick
Jordan and Eileen Siev
Ms. Louise Rogers
William S. Harwell, M.D.
Kenneth J. Rosa
Ms. Carol McBride
Mr. Murray Rosenwasser
Mr. Toby Fish
Mrs. Esther Meth
Barbara and Phil Waxer
Lillian and Rubin Weser
Tom and Carol Sculco
Mr. and Mrs. Robert Chen
Ms. Naomi R. Simons
Owens Funeral Home
50
Mrs. Cynthia Evedne Brown
McDonald
Fay Rose and Andrew
Doris Abarno
Dennis and Mary Treubig
Mr. Herbert Abrams
The Cohen Family (Marilyn, Howard,
Andrew, Lauren, Jeff & Merrie)
Mr. Jerry Abrams
Ms. Leslie J. Cooper
Joseph Amacio
Mr. Jack Feldman
Hilda Amador
Ms. Andrea Schneider
Mrs. Ruth Amsterdam
Gerald and Karen Prezioso
Claire Andrews
Mr. and Mrs. Leonard Mishler
Mrs. Evelyn Angel
Mr. Frank Cortese
Mrs. Patricia Anglum
Diane and Jordan Aqui
Mr. and Mrs. James Wagler
Ms. Regina Antler
Barbara Alexander & Tom Stiles Fund
Hope and Bernie
Anthony J. Antonucci
Dr. Toni C. Antonucci
Mrs. Anne Askin
Jennifer Askin
Mrs. Ruth Bruno
Mr. Dennis Fandler
Mr. Cornelius Buckmon, Jr.
Mr. Bill Russo
Pauline Caggese
Henriann John and JC
Mary Campasano
New Providence Middle School/
High School Math Teachers
Mr. Vincent Cavataio
Ms. Roberta F. Edwards
Mrs. Katherine Cheng
Helene Lerner
Leonard Church
Tom Brensic and Lloyd Lederkramer
Lincoln Guild Housing Corp.
Lucy Cirigliano
Ms. Ann Oliva
Daniel Cohen
Mr. and Mrs. Michael Dreizen
Leonard M. Cohen
Mr. and Mrs. Daniel Mandel
Mrs. Audry Condon
Ms. Ingrid T. Hewitt
Mrs. Helen Crosby
Gerald and Karen Prezioso
Ms. Angela Minasi
Rebecca Morrison and Joan Tana
Ms. Mollie Moskowitz
Dr. and Mrs. Jeffrey L. Oberman
Dr. and Mrs. Walter S. Peterson
The Queens College Library
Mr. Manuel Sanudo
Dr. Suzanna Simor
Mr. Jeffrey Zahn
Xiaofeng Zhou
Mrs. Sonya Friedman
Anne McBride Schreiber and
Jordan Schreiber
Mrs. Florence De Pascale
Carl and Rosemarie Oliveri
Mr. George Gardner
Mr. Brian Gardner
Mr. Maurice De Picciotto
Ms. Joyce C. Schnapp
Mr. John DePetro
Joanne and Salvatore Giallanza
Bernard Derris
Leslie and Fanshien Mellis
Judy and Nat Rothman
Beth Gleick
Paul M. Cohen
Dot Roberts
Mrs. Rosaria Cacciola Duwe
Ms. Stephanie M. Annunziata
Michael and Nicoline Colalillo
Mrs. Donna Bavetta Ermete
Ms. Evanthia Rackages
Ms. Theodora ( Teddi ) Tsaousis
Mr. Abraham Ettin
Ms. Ruth Ettin
Judy and Robert Saccente
Ms. Maria Falla
Mr. and Mrs. Bruno Ferraris
Mrs. Anita Fay
Mrs. Robert A Smith
Sandy Felberbaum
Mrs. Audrey S. Felberbaum
Mary P. Daley
Ms. Josephine Mallo
Mrs. Selma Barkan
Mr. Joseph D’Ambrosio
Mrs. Robin F. Hirsch
Mr. Frank Fernandez
AXA Foundation
Fran & George Cassidy
Ms. Cindy Salerno
Leonard C. Bartkus, Sr.
Mr. Thomas J. Giuffre
Mrs. Anna Dargis
Ms. Laura Giordano
Julia Bauer
Ms. Margaret Lynch
Mr. Gerald Davis
Mr. and Mrs. Robert R. Shaw
Toby Baum
Ms. Susan Wexler
Mrs. Geraldine Arnold Davis
Mrs. Barbara Freeden
Ms. Barbara Bautz
Ms. Nancy A. Bautz
Concetta de Innocconlis
Mr. and Mrs. Giovanni Iocco
Marilyn R. Becker
Miss Jennie Newbery
Piero M. De Luise, M.D.
Louise Magro Abitabile
Mr. Wayne W. Anderson
Mr. Hugo F. Arana
Gelsomina Artuso & Orlando
Marie, John, Weanda, Leslie,
Tish, Pat, Loutta, Linda, Barbara,
Margaret, Kate, Jess, Helen, Lori V.
Kathy, Deani and Marianne
Dr. Neil M. Calandrillo
Cherri and Howard Dorris
Ms. Anita Fusco
Richard and Paula Getnick
Ms. Mary A. Hanley
Herbert and Lucille Huebscher
Dr. & Mrs. William Jannetti
Mrs. Shoshana Kaufmann
Ms. Galina Letnikova
Madeline, Michael & Steven Lewis
Ms. Suzanne Li
Mrs. Sylvia Birdie
Mrs. Rosemary Mollo
Ms. Shirley Blauvelt
Ms. Jane Morrison
Ms. Freda R. Blay
Johnson & Johnson Family of
Companies
Mrs. Marian Gerstein
Ms. Barbara L. Gerstein
Agnes Dowler
Mr. Charles Tomasullo
Mrs. Beverly Baer
Annette and Pete
Vivian Biernot
Jill and Gregg Patnales
Judy Gersten’s Mother
Ms. Annette Schehr
Elsie Ginsberg
Mr. and Ms. Franklin Thier
Jean Feldman
Mr. Jack Feldman
Murray Berkowitz
Sandy and Mattie Roter
Hugo Garin
Mrs. Annmary Passantino
Mrs. Elizabeth Dissenstein
Henry and Mary Pratt
Mr. Francis Daleo
Len and Ellyn Novick
Mr. William Bennett
Arnie and Sheila Berliner
Manny Gallo
Leslie and Susan Gerber
Mrs. Lenore ( Leenie ) Dick
Elaine and David Wolpin
Mr. Harvey Feldman
David Kim
Dr. Uri B. Zeev
Ms. Laura Befi
Ms. Rosanna Robustelli
Mr. Edward Gallagher
Mr. Matthew Baum
Mildred Giamanco
Mr. Philip T. Gambino
Rose and Cathy Lentini
Ms. Tamara Lourdin
Ms. Rosanne Milano
Mr. Joseph Di Natale
Mr. and Mrs. George Ash
Fiorello D’Agata
Mr. Stephen D’Agata
Salvatore Attardo
Ms. Audrey Casatelli
Ms. Melissa Musman
Mr. Meyer Fuchsberg
Ms. Rosalie Fuchsberg
Geri Feuer
Kenneth and Judi Burnstein
Brenda and Elliot Kleinman
Say Filardo
Our Lady of Grace Columbiettes
Marion Fine
Ms. Jennifer Alderman
Ms. Faye F. Fisch
Scott and Cindy Barlow
Mr. Jeff Christian
Randi and Stuart Epstein
Ms. Edith Hilton
Ms. Alice M. Lamberson
Mrs. Deborah Prince
Mrs. Elina Ravinova
Mary and Jerry Saviola
Seymour and Ruth Solomon
Mr. Kevin Walsh
Ms. Sue Weiss
Marcella Fitzgerald
Helen Sultanik and Dorothy Prager
Mr. Irwin Flaum
Eileen and Bob Croland
Nadine and Steven Posnansky
Mrs. Jole Framarin
Italian Trade Commission
Pearl H. Goldberg
Ms. Ina Gail Goldberg
Ms. Estelle Goldblatt
Mr. Larry M. Goldblatt
Ms. Frances Golub
Ms. Sarah H. Wieser
Mrs. Joyce Good
Mr. Ira P. Hersh
Mr. Ralph Goodman
Mrs. Carole Rosenwasser
Ruth Goodman
Howard and Gayle Rotto
Mimi Gottlieb
Ms. Marilyn Brodie
Mr. Louis Gover
Ms. Blanche Ricci
Ms. Dorothy Grant
Mrs. Susan Lewis
Mr. Richard Graziano
Ms. Marie Jacucci
Seymour Greenstein
Jerry and Laura Silverberg
Lee Grilli
The GCCM Team
Ms. Mona K. Butler
Ms. Elizabeth Gallagher
Greg and Heidi Gromek
Mr. Seth Hulkower
Mrs. Lynda Nicolino
Pure Energy Resources, LLC
William and Millicent Tufano
Mr. Edward Grimm, Sr.
Mr. Harry T. Nullet
Mr. William Joseph Gross
Sherman Boxer
Lynne and Michael Leonard
Kate and Leslie Grosshandler
Dr. and Mrs. Sherwin J. Berger
Ms. Beatrice Weisel
Harvey Grossman’s Mother
Mrs. Golda Pincus
Aaron Gural
Mr. and Mrs. Jay Anderson
Mr. and Mrs. Michael Dreizen
William Felder
Lee & Jeffrey Feil Family
Foundation, Inc.
Burton and Judith Resnick
Mel and Judith Schwartz
Mr. Sonny Handler
Anne McBride Schreiber & Jordan
Schreiber
Mrs. Louise Harwell Rogers
William S. Harwell, M.D.
Gene Hathaway
Mr. Joel Moss
Mr. Robert Haufler
Mr. and Mrs. Andrea and Norman
Sommella-Olton
Harry Helfenbaum’s Father
Ms. Janet Scott
Mr. Irwin Hersh
Lewis and Sheila Abrahams
Anita Horan
Ms. Karen S. Fisch
Norman Horowitz
Ms. Lynda Marsh
Mrs. Lillian Hyman
Mr. and Mrs. Anthony DePalma
Ms. Joyce Posner
Ms. Selma Iger
Ms. Joan Schlissel
Mrs. Maria Inniss
Ms. Paige E. Edwards
Mr. Joseph Iulo
Ms. Eleanor L. Fanelli
Ms. Ines Jacullo
UBS Foundation USA
Ms. Elaine Weinberg
Mrs. Anne Jaffe
Meralee and Art Silverman
Felicia Kainer
Christopher and Nancy King
Mr. Kaplan
Stephen and Paula Karasik
Ms. Phyllis Kaplan
Ms. Meryl C. Peskin
Jack Kelly
Ms. Rosemarie Goodnough
Mrs. Louise M. Kennedy
Mr. A. J. Rosen
Friends in the Office of the Registrar
Josephine H. Kent
Gail Eichhorst
Geraldine Kincaid
Suzanne Mirra, M.D.
Mr. Robert King
Rolf and Ann Marie Haag
M. William Klein
Dr. Janice F. Klein
Ms. Rhoda Kronenberger
Norman and Shirley Hyman
Isaac Krupenia
Mr. Neil Ross
Mrs. Blanka Kutinow
Sam and Marilyn Rosenfarb
Mrs. Alexandria La Forte
Ms. Elizabeth Marra
Mr. Ambrose Lacey
Mr. James M. Carr
Peter LaMann
Ms. Amber N. LaMann
Mrs. Racelle Larkin
Mr. Josan Russo
Mrs. Helen Leap
Pat & Tom Connolly
Mrs. Kathleen Leddy
Ms. Mary Ann Zimmermann-McKinney
Morris Levinsohn
Judith and Marty Baron
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51
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The New York City Chapter
honorgift
tribute program
Mr. Melvin S. Zuckerman
Mrs. Jane Troy
HonorGift Selection
In Memory Of • Autumn Sanctuary
In Honor Of • Ballooning Over Country 1
On the Special Occasion Of
Ballooning Over Country 1
It’s easy to order an
HonorGift tribute card:
• Phone us at 646-744-2900
HonorGift tributes provide
a special opportunity to honor the
memory of a family member, friend
or colleague, or to recognize an
individual or life occasion.
Our HonorGift tribute cards
feature the beautiful images
of artist, Linda Mears.
Each HonorGift you send shows
the recipient you care and that you
support the NYC Chapter.
Ballooning Over Country
Autumn Sanctuary
A minimum gift of $30 is required for all HonorGift cards.
For bulk orders (i.e., for graduations, weddings, etc.) please contact
Hillary Donohue at [email protected] or call 646-744-2948.
Know Your Charity!
Please know that unless you see
your donation is not going to the
New York City Chapter of the
Alzheimer’s Association.
The following organizations ARE NOT affiliated
with the Alzheimer’s Association:
American Health Assistance Foundation
Alzheimer’s Foundation of America – AFA
Leeza’s Place
Long Island Alzheimer’s Foundation – LIAF
Staten Island Alzheimer’s Foundation – SIAF
If you have any questions, please call the
New York City Chapter at 646-744-2905.
New York, NY 10017
www.alznyc.org
52
New York Consortium for Alzheimer Research and Education
Columbia • NYU • Mount Sinai
A
The New York Consortium for Alzheimer 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.
Cognitive Problems Following Anesthesia
lmost all patients and their family members are
apprehensive when surgery is needed. When
the patient is elderly and has dementia there are
many additional concerns including the post-operative
effect of general anesthesia. We interviewed Dr. Alex
Bekker, Professor of Anesthesiology and Neurosurgery
at NYU School of Medicine, to learn about the impact
of surgery and anesthesia on older adults, highlighting
those with memory impairment.
Interview with Dr. Alex Bekker:
Are there cognitive problems associated with
anesthesia on older adults?
The majority of patients typically come through
surgical and anesthetic experiences quite intact.
However about 10% of people of over age 65 have
some problems postoperatively (i.e. following surgery).
There are two types of problems: 1) delirium, which
is a sudden decline in attention, focus, perception and
thinking, causing a person to appear confused and out
of touch with his or her surroundings; and 2) post
operative cognitive dysfunction (POCD) which includes
problems with memory, attention, concentration and
planning (also known as executive function).
When do these problems occur and how long
do they last?
The onset of delirium is usually within 1 to 3 days
after surgery and may last up to a week. If it lasts
longer, a thorough diagnostic evaluation should be
done to identify any treatable causes. POCD is usually
reported later, often after a patient has left the hospital.
It sometimes isn’t noticeable until the patient attempts
to return to routine activities, which may now seem
more difficult to do. People with POCD often recover
after several months or even a year after surgery.
Is an elderly person with intact memory at risk
for dementia after surgery?
While most people recover, in some cases the
cognitive deficit may persist and may herald the
beginning of serious cognitive decline and dementia.
One theory is that those who have a serious post
operative problem may have had a pre-existing deficit
that the surgical experience, including the stress, the
anesthesia and the hospital environment may uncover.
How do surgery and anesthesia affect people
with dementia?
Those with dementia are at an increased risk of
complications following surgery. They may awaken
more slowly and are more likely to experience
confusion and delirium. This might translate into
longer stays in the post surgical recovery room and
longer hospitalizations as well.
What causes these problems?
Many things may contribute to confusion and
cognitive problems postoperatively. Some medications
that are used to avoid symptoms such as nausea
following surgery have an “anti-cholinergic” effect.
This is the opposite of the effect of cholinergic drugs
such as donepezil (Aricept) that are often used to treat
Alzheimer’s disease. Drugs used in surgery for post
operative pain control may also worsen confusion.
What can be done if the patient exhibits
Delirium or Postoperative Cognitive
Dysfunction (POCD)?
It is important for individuals and their families
to report changes in memory and thinking to their
physicians either during the hospital stay or after they
go home, as certain medications may make delirium or
POCD worse. If cognitive changes develop suddenly, the
patient should be taken to the Emergency Department
immediately because conditions such as stroke may be a
consequence of the surgical and anesthetic experience.
What should an older adult scheduled for
surgery discuss with the surgeon or
anesthesiologist?
It is important to report existing memory or cognitive
problems or illnesses such as Alzheimer’s disease. It is
also important to report past problems following surgery
or anesthesia as these problems may recur. Finally it is
important to report all current medications, including
over-the-counter or “herbal/natural” remedies. The
doctor will advise the patient about whether to
continue or stop taking these medications, and will
53
Cognitive Problems Following Anesthesia
provide information about post operative pain control
medication and risk of side effects, including the
possibility of confusion or cognitive problems.
What types of anesthesia are associated with
more negative outcomes in people with
dementia?
There are no studies which clearly demonstrate
the advantages of a particular type of anesthesia. Some
data suggests that intravenous anesthetics, such as
dexmedetomidine are less damaging to the brain than
inhalational agents. Laboratory studies indicate that
inhalation anesthesia may promote processes that lead
to synthesis of proteins associated with Alzheimer’s
disease but further study is needed. There are some data
which suggest that titration of medications to specific
patient’s need using devices to measure the level of
anesthesia may improve the outcome.
To what degree can a patient be involved in the
choice of anesthesia?
Because some anesthetics are particularly appropriate
for some surgeries and because of the patient’s general
state of health, the anesthesiologist may not be able to
accommodate all patient wishes but it is important to
ask whether there is a choice. Communication between
patient, doctor and family is always key.
COLUMBIA UNIVERSITY MEDICAL CENTER • TAUB
INSTITUTE for research on Alzheimer’s
Disease and the Aging Brain • CLINICAL TRIALS
Treatment Studies
Effect of Gamma-Secretase Inhibition on the
Progression of Alzheimer’s Disease (AD)
This is a Phase III research study of the effect of LY450139,
an oral compound, on the progression of Alzheimer’s
disease. Men and women age 55 and older with mild
to moderate AD may be eligible to participate. For more
information, please contact Lynda Mules at 212-305-2077.
GLAD: The Gammaglobulin Liquid for Alzheimer’s
Disease (AD) Trial
This is a Phase III research study of intravenous immune
globulin (“IGIV”) in mild to moderate AD. Men and
women who are 50 to 85 years old with mild to moderate
AD may be eligible to participate. For more information,
please contact Ruth Tejeda at 212-305-7661.
Study of Bapineuzumab (AAB-001) Administered by IV
Infusion in Alzheimer’s Disease (ICARA)
This is a Phase III research study of bapineuzumab
administered by IV infusion which researchers hope will
attach to the amyloid protein in the brain and help the
body to remove it. Individuals diagnosed with mild to
moderate probable AD who are 50 to 88 years old may
be eligible to participate. For more information, please contact
Evelyn Dominguez at 212-305-2371.
Study of Bapineuzumab (AAB-001) Administered
Subcutaneously in Alzheimer’s Disease (AD)
This is a Phase II research study of bapineuzumab
54
administered by injection. Men and women with mild
to moderate AD who are 50 to 89 years old may be
eligible to participate. For more information, please contact
Study of CAD106 in Mild Alzheimer’s Disease (AD)
This is a 52-week Phase II research study to evaluate
the safety and tolerability of CAD106 administered
by injection, which researchers hope may prevent the
formation of plaques in the brain. Men and women with
mild AD who are 40 to 85 years old may be eligible to
participate. For more information, please contact Lynda Mules at
212-305-2077.
Study of ACC-001 Administered Subcutaneously in
Alzheimer’s Disease (AD)
This is a Phase IIa research study of ACC-001
administered by injection. Men and women with mild
to moderate AD who are 50 to 85 years old may be
eligible to participate. For more information, please contact
Study of Memantine in Frontotemporal Dementia
This is a Phase IV research study to determine if
memantine is effective in slowing the rate of behavioral
decline in frontotemporal dementia. English-speaking
men and women who are 40 to 80 years old and who
have been diagnosed with frontotemporal dementia
(FTD) or semantic dementia (SD) may be eligible. For
further information, please contact Lynda Mules at 212-305-2077.
Metformin in Amnestic Mild Cognitive Impairment
(MCI)
This is a 12-month research study of metformin, a
medication effective in the prevention and treatment
of diabetes. We are testing metformin in people with
MCI. We are seeking people over the age of 55 who are
overweight or obese and have memory complaints. For
more information, please contact Dr. José Luchsinger at 212-305-4730.
Antipsychotic Medication Treatment of Psychosis and
Behavioral Dyscontrol in Alzheimer’s Disease (AD)
This research study uses risperidone (an FDA-approved
antipsychotic medication) to treat people with AD who
suffer from hallucinations, delusions, agitation, and/or
aggression. Treatment continues over 48 weeks. Each
participant must have a caregiver to assist with adherence
to treatment and provide information. For further information,
please contact Karine Cunqueiro at 212-543-6132.
Antidepressant Treatment Studies for Combined
Depression and Memory Complaints
We are conducting medication treatment research studies
for individuals age 50+ with both depression and mild
memory and/or concentration difficulties. The studies
offer neuropsychological testing for memory and
psychiatric evaluation of mood. Treatment is provided
for eligible individuals at no cost for at least 6 months. For
more information, please contact Amma Baker at 212-543-5067.
Other Studies
Brain Imaging Study Measuring Changes in Cerebral
Blood Flow and Cognition with Age
We are seeking healthy individuals and people with
memory complaints or with Alzheimer’s disease, age 55
to 85, to participate in a research study using Arterial Spin
Labeling (ASL), a technique that uses MRI to measure
cerebral blood flow in the brain. The study consists of
three visits and includes an MRI and memory testing,
and participants will be compensated. Please contact Brittany
Holmes at 212-305-7846 for more information.
Genetic Linkage Study
We are seeking families of all nationalities and backgrounds
for a study that seeks to identify genes that may increase
the risk for developing Alzheimer’s disease (AD). If your
family has at least two living siblings diagnosed with AD
who are 60 years old or older, please call Jennifer Williamson
at 212-305-4655.
Predictors Study
This research study is for people who are 55 to 90 years
old who have been diagnosed with Alzheimer’s disease
and/or Dementia with Lewy Bodies. Participation
includes initial medical evaluation and testing to assess
memory and cognitive functions. This longitudinal study
requires bi-annual visits which include memory testing
and answering questions about daily activities. For more
information, please call 212-305-1987.
Memory Problems II: Course and Predictors of
Outcome
This research study for people with and without memory
complaints who are 55 to 90 years old includes medical
evaluation by physicians who specialize in memory
disorders, and testing to assess memory and intellectual
functions. Visits and monitoring will take place annually
for 7 years. At the initial visit only, an MRI scan, two
PET scans and a lumbar puncture will be performed.
Participants will receive reimbursement. For more information,
please call 212-543-5025.
African American Genetics Study and Health and
Cognition Study among African American Women
The African American Genetics Study, for people over the
age of 60, looks at genetic risk factors for Alzheimer’s
disease among African Americans. The Health and
Cognition Study among African American Women investigates
issues of aging, cardiovascular health and cognition among
African American women 40 years or older. Both studies
involve an interview to include memory and thinking
tests, questions about your health and experiences, and
a blood draw. For further information, please call Raquel Cabo at
212-305-1893.
Brain Donation Program “Give the Gift of Knowledge”
Brain donation allows valuable information to be
obtained regarding normal aging and diseases that affect
memory. To learn more about this program for yourself or a family
member, please call Arlene Lawton, RN at 212-305-9086.
Lucy G. Moses Center for Memory and Behavioral
Disorders
Changes in memory and thinking abilities can occur from
a variety of conditions, not just Alzheimer’s disease. Taub
Institute specialists offer a thorough multidisciplinary
evaluation of memory and thinking difficulties at two
locations: The Neurological Institute, 710 West 168th Street, New
York; and Columbia Presbyterian Eastside, 16 East 60th Street, New
York. For appointments, call 212-305-6939.
55
NEW YORK UNIVERSITY SCHOOL OF MEDICINE
SILBERSTEIN INSTITUTE • CLINICAL TRIALS
TREATMENT STUDIES
Clinical Trial of Anti-Amyloid Antibody
Bapineuzumab in Mild to Moderate Alzheimer’s
Disease (AD)
This 18 month phase III “immunotherapy” study is
testing the safety and effectiveness of Bapineuzumab,
an experimental antibody treatment that may reduce
beta-amyloid, one of the important toxic proteins that
contribute to the development of AD. We are enrolling
patients with mild to moderate AD who receive
intravenous doses of either drug or placebo to see if
further progression is slowed.
For more information, please call Erica Maya or Jessica Lerer at
212-263-5845 or 212-263-5708.
Clinical Trial of Gamma-Secretase Inhibition for
Slowing Progression of Alzheimer’s Disease (AD)
This trial is testing the effectiveness of a gamma secretase
inhibitor compound (Lilly LY450139) in reducing the
production of beta-amyloid, thereby possibly slowing
the rate of disease progression. Eligible participants with
mild to moderate AD receive either experimental drug
or placebo for 23 months. All participants in the study,
whether on active drug or placebo, eventually receive
the experimental drug for the latter half of the trial.
212-263-5845 or 212-263-5708.
Clinical Trial of Anti-Amyloid Antibody Treatment
with IGIV in Patients with Mild to Moderate
Alzheimer’s Disease (AD)
This trial is testing the safety and effectiveness of
Intravenous Immune Globulin (IGIV, Baxter) or placebo
in participants with mild to moderate AD. This treatment
may interrupt the processing of a protein in the brain,
beta amyloid, which is thought to play an early role in
the pathology of AD. This 18 month study will enroll
patients with mild to moderate AD. Participation involves
regular visits, repeated MRIs, and biweekly infusions
both at NYU and eventually in the participants’ homes.
212-263-5845 or 212-263-5708.
Clinical Trial of Dimebon for Slowing the Progression
of Alzheimer’s Disease (AD)
This trial is testing the effectiveness of a novel antihistamine
compound (Dimebon) as a potential treatment of mild
to moderate AD. Eligible participants who are diagnosed
with AD will receive one of two doses of Dimebon or
56
placebo for 12 months. Study participation involves
approximately 10 visits to the study center over 12
months with repeated safety and memory evaluations.
212-263-5845 or 212-263-5708.
Upcoming Clinical Trials
We will soon be seeking to enroll participants in two new
trials involving anti-amyloid investigational drugs, one
administered intravenously to AD patients and another
orally to MCI patients.
early Ad Diagnosis
Longitudinal Study of Normal Aging, Mild Cognitive
Impairment (MCI) and Alzheimer’s Disease (AD)
Participants receive a comprehensive diagnostic evaluation
and are re-evaluated every year. The goal is to improve
early diagnosis and better understand the clinical course
and causes of age-related cognitive decline and AD.
For more information, please contact Emma Shulman, CSW at
212-263-5756 or Thet Oo, M.D. at 212-263-8088 or
[email protected].
Positron Emission Tomography (PET) and Memory Study
This NIH-funded program uses advanced brain imaging
techniques to measure the metabolic function of the
brain so as to predict future cognitive impairment. This
longitudinal imaging study uses a new amyloid imaging
scan and a proven glucose metabolism scan to better
understand the differences between successful aging
and the progression to memory impairment and AD.
Participants include individuals between 40-90 years
with and without memory problems.
For more information, please call Schantel Williams at
212-263-7563.
Cerebral Spinal Fluid (CSF) Study
This NIH supported project study seeks to improve early
AD diagnosis based on analysis of cerebrospinal fluid
(CSF). We evaluate whether the amount and type of
amyloid and tau proteins (proteins associated with AD)
and isoprostanes (markers of oxidative stress) that are
found in the CSF are related to memory changes and the
brain shrinkage seen in MRI studies. These markers may
be useful to screen early AD and to potentially follow
progression and track response to treatment. Participants
include normal individuals over 40 and individuals with
memory problems, mild cognitive impairment and AD.
For more information, please call Dr. Kenneth Rich at 212-263-7563.
PET-Amyloid Diagnostic Clinical Trial
The goal is to test a new method (Bayer Healthcare) for
early detection of AD. When AD begins, a protein (betaamyloid) forms plaques in certain parts of the brain.
Since the drug ZK 6013443 binds to this protein, it is
made radioactive and used as a tracer with an imaging
method called positron emission tomography (PET).
This method provides brain images showing whether
there is amyloid in the brain. We are enrolling healthy
individuals over 55 without memory problems.
For more information, please contact Marla Guzman at
212-263-7563.
FDG-PET Study on Family History of Alzheimer’s
Disease (AD)
We recently discovered that children of mothers with
AD appear to be predisposed to reductions in brain
glucose metabolism, and may also be at increased risk
for developing AD (compared to children of AD fathers
and children of parents without AD). This NIH funded
study is recruiting cognitively normal individuals ages
25-85 with either a maternal or paternal family history
of AD, as well as individuals with no family history. The
project measures brain activity using a technique called
positron emission tomography (PET). The PET uses
a tracer (FDG) to measure brain glucose metabolism.
Participants receive a comprehensive medical exam and
also are offered medical, lifestyle and risk consultation.
For more information, please contact Dr. Lisa Mosconi at
[email protected] or Rachel Mistur at
[email protected]. You can also reach us at
212-263-7563.
helping caregiverS
Counseling and Support for People Caring for a
Parent with Alzheimer’s Disease (AD)
The purpose of this NIH-funded study is to determine
the effectiveness of a comprehensive counseling and
support intervention for people who care for parents with
AD. Participants are randomly assigned to one of two
interventions. All have access to resource information
and support from experts as needed. Those in the
enhanced group meet with a counselor individually and
with other family members.
For more information, please contact Olanta Barton at 212-263-5710
Early Stage Support Group Evaluation of Outcomes
This study offers facilitated support group meetings to
people in the early stages of AD and an assessment of
their benefits. Previous studies suggest these groups may
alleviate depression and social isolation, enhance coping
skills, improve self esteem and provide education and
mental stimulation in a safe environment.
For more information, please call Ursula Auclair, LCSW at
212-263-2245.
Memantine (Namenda™) and Individualized
Alzheimer’s Care
The goal of this 1 year study for middle- or late-stage
AD is to determine the added value of an individualized
patient management program in patients receiving
Memantine. All patients receive Memantine and followup evaluations at no charge and are randomly assigned in
a group receiving compensation or a group receiving an
individualized program consisting of caregiver training
and support as well as home visits to get the patient
exercising, doing enjoyable activities and cognitive
stimulation.
For more information, please contact Dr. Sunnie Kenowsky at
212-263-7164 or [email protected].
other studies and programS
The Multicultural Program
Our Multicultural Aging and Memory Evaluation
Program offers a comprehensive, multidisciplinary
evaluation for elderly individuals with memory
complaints or symptoms of AD. The mission is to
provide diagnostic services to the ethnic minority and
underserved populations, to promote their access to
the latest research programs, and provide culturally and
language-appropriate support services.
For more information, please contact Dorothy Patterson or
Dr. Sharon McKenzie at 212-263-3201 or Milena Perez at
212-263-1027 (Spanish).
Brain Donation Program
The NYU ADC team is very grateful to donors and their
families for participation in our Brain Donation Program.
Brain autopsy provides a definitive diagnosis for families
while contributing to important research on the causes
and treatment of brain aging and AD. Volunteers with
and without memory impairment are eligible.
For more information, please contact Lynne Leung at 212-263-5108
57
MOUNT SINAI SCHOOL OF MEDICINE
ALZHEIMER’S DISEASE RESEARCH CENTER
CLINICAL TRIALS
CONCERT: A Phase 3 Study Evaluating Dimebon in
Alzheimer’s Patients on Donepezil
Mount Sinai researchers will be participating in a phase
3 study being conducted nationwide to evaluate how
well and how safe a study medication, Dimebon, is in
combination with donepezil (Aricept®) in patients
diagnosed with mild-to-moderate Alzheimer’s disease
(AD). Study participants will receive active study drug or
placebo (inactive pill) for 12 months, the duration of the
study, while continuing to take the prescribed donepezil.
For more information, please contact Andrew Vigario at 212-241-5692
or [email protected]. MSSM #09-0279; MSSM approved
through 3/23/10.
Investigational Clinical Amyloid Research in
Alzheimer’s
Volunteers are being sought to participate in a clinical
study to evaluate the safety and effectiveness of an
investigational drug to help control the progression
of Alzheimer’s disease. Study participants will be
randomized to investigational product or placebo. For
more information, please contact George Marzloff at 212-241-1514
or [email protected]. GCO #08-0241, 08-0242; MSSM
approved through 2/6/10.
EPIX PRX-03140 202 Combination
There is a new phase 2 study to evaluate the efficacy
and safety of an experimental drug, PRX-03140, in
combination with donepezil-treated patients with
Alzheimer’s disease. Volunteers will receive either active
study drug or placebo for approximately 6 months,
the duration of the study, while continuing to take the
prescribed donepezil. For more information, please contact
Danielle Charney at 212-659-8883 or [email protected].
GCO #08-0962; MSSM approved through 10/6/09.
EPIX PRX-03140 203 Monotherapy
There is a new phase 2 study to evaluate the efficacy
and safety of an experimental drug, PRX-03140, for the
potential treatment of Alzheimer’s disease. Volunteers
will receive active study medication, donepezil, or
placebo for approximately 4 or 7 months, the duration
of the study. For more information, please contact Danielle
home assessment methods – a telephone, electronic kiosk,
or mail-in forms — and their memory and thinking skills
will be assessed using their particular method monthly,
quarterly, or annually for a 4-year period. For more
information, please contact Jessica Egan at 718-584-9000 ext 1704.
GCO #91-208(13); MSSM approved through 8/31/09.
Trial of a Nutritional Supplement in Alzheimer’s
Disease
A study investigating whether an antioxidant formula
containing resveratrol can help memory and thinking
of Alzheimer’s disease patients. Some study participants
will receive the formula (8 oz. of grape juice twice a day
with medication in it) and some will receive a placebo
(sugar pill). For more information, please contact Danielle Charney
at 212-659-8883 or [email protected]. GCO #05-1394;
MSSM approved through 4/30/10.
Antipsychotic Discontinuation in Alzheimer’s Disease
This study examines the treatment of participants’
behavioral and psychiatric symptoms (e.g., agitation,
aggression, pacing, paranoia, hallucinations) with
risperidone, a medication known to improve these
symptoms. For more information, please contact Andrew Vigario
at 212-241-5692 or [email protected]. GCO #06-0930;
MSSM approved through 8/31/09.
Brain Tissue Donation Program
The goal of this program is to improve existing treatments
and to develop new treatments for AD, which is not possible
without the generosity and altruism of individuals who
partner with Mount Sinai by participating in our brain
donation program. Therefore, men and women, with and
without memory impairment are eligible to provide their
“intent” to consent for this program. For more information,
please contact Karen Dahlman, Ph.D. at 212-241-1844. GCO #84-119
and #79-141, MSSM IRB approved through 3/31/10.
Note: Spanish-speaking participants are welcome in all studies. All
study participants receive reimbursement for any related expenses.
Participants without AD receive monetary compensation for their time.
Charney at 212- 659-8883 or [email protected]. GCO
#08-0961; MSSM approved through 10/6/09.
If you are interested in any of the above research studies, please
contact the Alzheimer’s Disease Research Center at 212-241-8329. Mount Sinai also has Satellite clinics specializing in AD and other
Memory Disorders located at: The Home-Based Assessment Study
Participants are randomly assigned to one of three in-
Elmhurst Hospital in Queens: 718-334-3983
Bronx VA Medical Center: 718-584-9000 ext. 5199
58
Estamos contentos de compartir, que despues
de nuestra primera edición, hemos recibido
comentarios favorables acerca de la información
diseminada. Esperamos seguir escuchando de
usted.
En esta edición usted encontrara:
◾ Mensaje de la Presidenta
◾ Mensaje del Vicepresidente
◾ Articulo Principal:
La Vajez y la Economía
◾ Actualidad en el Programa Latino
◾ Noticias y Eventos
◾ Línea de Ayuda Telefónica
◾ MedicAlert + Safe Return
◾ Entrenamiento
◾ De Nuestros Corazones
◾ Hoja de Datos:
Sexualidad
◾ La Esquina del Cuidador:
La Reina de Mis Sueños
◾ Punto de Vista:
¿Que Significa Ser Un Cuidador?
◾ Taller Interactivo
◾ Servicios en Español
◾ Boletín de Noticias
Si usted desea recibir nuestra revista en español
llámenos a nuestra línea de ayuda al teléfono
800-272-3900 para ser registrado en nuestra
lista de correo.
Queremos reconocer la generosidad de la Achelis Foundation por apoyar nuestra Revista.
59
Legal Guidance continued from page 31
4. Special Powers are also included in the updated
form. Specific mention of health care and billing payment
has been added to records and reports, this allows access
to health records and complies with strict HIPAA
requirement. In addition to the powers found in the
prior form, insurance companies, family, government, civil
and military benefits are now mentioned and directed to
accept the Power of Attorney.
5. Changes affecting the appointed agent
include establishing compensation for the agent and the
introduction of a “Monitor.” For the first time the law
states that agents may be paid for the services provided
under the Power of Attorney. The payment is not fixed but
described as “reasonable reimbursement for expenses and
services rendered.” In drafting the Powers of Attorney, the
grantor now must decided whether to pay the agent and
at what rate. The agent must declare this compensation
as taxable income. This could have a Medicaid impact
as compensation to an agent under a Power of Attorney
would not be considered a transfer.
6. The grantor may appoint a Monitor to act as an
optional safeguard. The Monitor is an appointed individual
who would receive a copy of the Power of Attorney and
could request all records of transactions made using the
Power of Attorney. This should be carefully considered in
creating the new Power of Attorney, and may cause some
grantors to amend their present document to include this
option.
7. Instructions to the Agent: The Power
of Attorney remains revocable and the new power
specifically outlines the following procedures: a written
format for revocation, the need to act according to the
grantor’s instructions, a caution to avoid conflicts of
interest, direction to keep good records of all transactions,
payments and receipts, instructions to clearly identify
yourself as an agent when signing, and finally a rule
stating a good fiduciary never commingles assets with the
grantor. The standard of care for the agent is the “prudent
person’s standard of care” and the agent may be liable for
any acts or omissions not in the grantor’s best interest.
This appointment is given seriousness and weight.
8. Acceptance of the Power of Attorney:
Banks, financial institutions and other parties must accept
the Power of Attorney if the statutory form is used and
properly executed. This includes the Statutory Major
Gifts Rider. The new law specifically focuses on having
the New York State form be universally accepted by all
sources in order to eliminate the need to execute multiple
copies of the documents to satisfy the requirement of each
individual financial institution.
In general, the Power of Attorney is a vital tool in long
term care and financial planning. The September 1, 2009
revision both strengthen the appointed agent’s ability to
effectively use this document for the grantor’s needs, while
protecting their individual’s rights and financial well being.
Consult with your elder law attorney or financial advisor
before signing this most useful legal tool.
JUDITH D. GRIMALDI, CSW, J.D., CELA, partner in the law firm of Grimaldi & Yeung LLP, located in Brooklyn, New York. She represents the rights of
the elderly and disabled in Medicare, Medicaid and Trusts & Estates, with special focus on family caregivers and homecare. Ms. Grimaldi is a certified Elder Law Attorney, Certified Social Worker, Chair of the Health Issues Committee of the NYS Bar Association’s Elder Law Section and a Board
Member of the N.Y. Chapter of NAELA. She has been AV rated by Martindale-Hubble, as well as being named one of New York’s Best Lawyers by
New York Magazine in 2008 & 2009.
60
Shop the
Unit Price QuantityTotal
Echo for Alzheimer’s
“Forget-Me-Not” Go Green shopping tote (cotton canvas)
“Forget-Me-Not” beach bag (cotton canvas)
“Forget-Me-Not” beach hat (cotton canvas)
$20.00
$30.00
$25.00
Apparel
for the
Perfect Gifts!
“Forget-Me-Not” silk scarf by Echo Design (36” x 36”)
“Forget-Me-Not” silk tie by Echo Design
20th Anniversary Memory Walk silk scarf by Echo Design (36” x 36”)
NYC Chapter Fleece Vest please circle size: S M L XL
Bracelets
Alzheimer’s Awareness Purple Wristbands — Pkg of 10
“Forget-Me-Not” Sterling Silver bangle
size: standard
large
“a reason to hope” Sterling Silver bangle
size: standard
large
Both bangle bracelets
size: standard
large
“a reason to hope” Sterling Silver cuff bracelet for men
“a reason to hope” Sterling Silver cuff bracelet — cuff bracelet for children
“Forget-Me-Not” Pendants
Sterling Silver pendant with Sterling chain
Vermeil pendant with gold-filled chain
Sterling Silver pendant
with Sterling chain
Small flower
Vermeil pendant
with gold-filled chain
Small flower
“Forget-Me-Not” Earrings
Sterling Silver pierced drop earrings
Vermeil pierced drop earrings
Sterling Silver pierced post earrings
Small flower
Vermeil pierced post earrings
Small flower
“Forget-Me-Not” Cuff Links
Polished cuff links
$98.00
$45.00
$98.00
$40.00
$10.00
$70.00
$70.00
$125.00
$75.00
$50.00
Polished
Polished
Antiqued $25.00
Antiqued $30.00
Polished
Antiqued $15.00
Polished
Antiqued $20.00
Polished
Polished
Polished
Polished
Antiqued
Antiqued
Antiqued
Antiqued
Sterling Silver
“Forget-Me-Not” Pins & Combs
Vermeil
Sterling Silver stick pin Polished
Vermeil stick pin Polished
Enameled pin/pendant
Sterling Silver pin/pendant
Silver Plate pin/pendant
Enameled pin
Sterling Silver rope chain 22”
Hair Comb (special introductory price) Gold
Hair pin Gold
$30.00
$35.00
$25.00
$30.00
$35.00
Antiqued $15.00
Antiqued $15.00
$20.00
$50.00
$20.00
$20.00
24”
$20.00
Silver
$10.00
Silver
$5.00
Gift Items
he NYC Chapter
T
has created a beautiful
collection of jewelry &
in partnership with Echo
Design, our “Forget-Me-Not” silk scarf, tie,
Go Green shopping tote, beach bag and hat, and
the gorgeous 20th Anniversary Memory Walk silk
scarf designed by Charles Fazzino.
Visit the
at www.alznyc.org.
Orders may be placed on-line, by phone at
646-744-2900, or by mail using this order form.
20th Anniversary Memory Walk Limited Edition framed 3D Artwork (25” x 25”) $1,600.00 $1,200.00
20th Anniversary Memory Walk Poster — signed by Charles Fazzino
$40.00
$25.00
“Forget-Me-Not” Note Cards — Box of 12
$15.00
Memory Walk 2008 Note Cards — Box of 12
$15.00
NYC Chapter Note Cards — Box of 12
$15.00
“Fliers” Note Cards — Box of 12
$15.00
NYC Chapter Travel Mug
$12.00
“Forget-Me-Not” Umbrella
$10.00
Memory Walk 2008 Mousepad
$10.00
Sub-Total:
NY State Residents Add 8.375% Sales Tax:
Tax Deductible Contribution:
SHIPPING & HANDLING CHARGE OF $6.00 IF MAILED (pick-up available)
Total Amount:
Please make your check payable to Alzheimer’s Association, NYC Chapter or charge my credit card:
(Visa, MasterCard, Amex) #: Exp. Date:
Signature:
Name:
Address:
City:
State:
Phone: (home)
(work)
Mail this order form to:
E-mail address:
Alzheimer’s Association, NYC Chapter
ALZNYC STORE
New York, NY 10017
Shipping Address: Volume 33 • Summer 2009
Zip:
@
same as above
Name:
Address:
City:
State:
Zip:
61
For the first time ever, in celebration of our 21st Annual Memory Walk,
the New York City Chapter has planned TWO Memory Walks for 2009.
So join us for one or both!
Everybody needs to register, even the kids!
With
At Riverside Park, Manhattan
Sunday morning, October 25th
Join us for our annual Fall 2-mile walk
through beautiful Riverside Park on
Manhattan’s Upper West Side.
at
Sunday afternoon, August 9
th
1-mile walk around the warning track
Bring the entire family for entertainment,
fabulous views, yummy breakfast,
exercise and remembrance.
followed by
The kids will love our fun-filled KIDZ KORNER,
your 4-legged walkers will be wagging all the
way to the Doggie Dugout to receive their
Memory Walk 2009 Doggie Bandana.
Brooklyn Cyclones vs Jamestown Jammers
Top Fundraising Team will receive tickets for a free ride on
Coney Island’s landmark Wonder Wheel!
And back by popular demand, we will once
again have the Evercare Family Tent for
those who wish to attend but are caring for a
family member unable to Walk the Walk.
Fun for the kids — of all ages!
More to follow in our Summer issue.
Top Fundraiser will be invited to throw the Opening Pitch.
When you walk, you raise critical funds that benefit the care, support and research efforts of the
Alzheimer’s Association. Your steps move us closer to better treatments and a cure.
When you walk, you raise awareness that encourage people to seek an accurate and early diagnosis.
When you walk, you support a better life for those living with Alzheimer’s — and the millions more who
must manage the financial and emotion burdens of life as a caregiver.
Register • Start a Team • Donate • Volunteer
www.alznyc.org
To become an Official Sponsor of Memory Walk 2009,
please contact Meghan Washington at 646-744-2939 or [email protected].
Our goal for 2009 is $1,000,000. We can reach it with your support!
62
✃
Please fax completed form to Alzheimer’s Association, Memory Walk 2009 at 212.490.6037
or mail to Alzheimer’s Association, Memory Walk, 360 Lexington Avenue, 4th Floor,
New York, NY 10017. One registrant per form. You may copy this form.
Walk Location: □ August 9 — KeySpan Park
□ October 25 — Riverside Park
My goal is to raise
to help end Alzheimer’s!
(The recommended minimum goal is $200.)
All registered walkers who raise $100 will receive the Official Memory Walk 2009 T-shirt.
Join Us for One or Both of
NYC’s 21st Annual
Name
Address
City
(
)
Phone (day)
Sunday afternoon,
August 9
with the
Brooklyn Cyclones
KeySpan Park, Coney Island
1-mile walk around the
stadium warning track.
To enter the stadium everyone
must have a ticket.
To receive a ticket:
Raise $100+ for a bleacher seat,
Memory Walk 2009 T-shirt, hot dog
& soda, and free parking.
Raise $200+ for a field-level seat,
Memory Walk 2009 T-shirt, hot dog
& soda, and free parking.
Sunday morning,
October 25
Riverside Park
Entrance at West 97th Street
& Riverside Drive
Early Bird Registration!
Register Online
by August 15th
and you will receive
a special prize at the Walk!
Go to
www.alznyc.org/memorywalk
or call the Memory Walk Hotline
646.744.2997
✃
for more information
Volume
33 •32
Summer
2009
Volume
• Summer
State
(
Zip
)
Phone (night)
E-mail
Company
My employer has a matching gift program: □ YES □ NO
If you are a member of an Official Team, complete the following:
Team Name
Team Captain’s Name
How many years have
I will be walking as a □ Team Captain □ Team Member □ Individual you participated in the
Want to start an Official Memory Walk Team? Call 646.744.2997
Memory Walk? ______
Enclosed is my personal donation of: □ $500 □ $200 □ $100 □ other $
□ Check payable to the Alzheimer’s Association, NYC Chapter
□ Charge the following: □ Visa □ MasterCard □ American Express
Credit Card Number
Exp. Date
Signature
Date
Please donate the value of my fundraising prizes back to the Alzheimer’s Association: □ Yes □ No
Please send me additional materials:
□ Brochures English: (indicate quantity):
□ Brochures Spanish:
□ Posters English:
□ Posters Spanish:
□ Information on volunteer opportunities
□ Information on Alzheimer’s disease
□ Information on advocating for people affected by Alzheimer’s
Assumption of Risk, Release and Permission
In consideration of being allowed to participate in Memory Walk, I hereby expressly assume all risks of personal injury, death
or property loss arising in any way out of my participation. I represent that I am physically fit and able to participate in
this event. I hereby release and agree not to sue Alzheimer’s Association, its chapters, their respective officers, directors,
volunteers, employees, sponsors and agents, from or in connection with any and all liability and claims arising out of my
participation in this event. I grant full permission to the organizers of this event to use and publish my name and image as
a participant in photographs, video, online, or via other media or recordings.
*Signature Date
If Participant is a minor or acts in accordance with a legal guardian, the parent or guardian must sign
and agree to the below:
I am the parent and/or legal guardian of Participant, and I hereby consent to his/her participation. I have read the
foregoing agreement, and I hereby agree on behalf of myself and Participant to its terms.
63
NON-PROFIT ORG.
U.S. POSTAGE
PAID
LITTLE ROCK, AR
PERMIT No. 1884
New York, NY 10017
Change Service Requested
www.alznyc.org
646 744 2900
800 272 3900 — 24-hour Helpline
B u l l e t i n
B o a r d
Sign up now
Monthly Educat
Leader
p
u
o
r
G
t
r
o
Supp
eminarsgistration requires a
Training S
Re
nd all
Caring for a Loved One with
Early-Stage Dementia:
A Workshop by Telephone
You will learn about the challenges of
providing effective care for someone
in the early stage of Alzheimer’s or
other dementias. Tips and strategies
will be offered to help you cope in your
caregiving role.
WHEN: 4 Thursdays
November 12, 19, December 3, 10
Presented by Paulette Michaud, LCSW,
Director of Early Stage Services
This series is in partnership with
DOROT, Inc. For more information,
contact Fran Rod at 973-763-1511.
64
g
or
at
e
itment to att
r,
F all T raining 09 comm
. To registe
g
0
in
2
in
,
a
6
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f
e
o
b
w
re
4 days
■ Octo
.
n about futu
23, 2009
w
■ October 0, 2009 for informatio
w . alz ny c
g
in
o
g
3
n
r
o
e
r
b
o
■ Octo
shops,
r support
er 6, 2009 work
n groups fo
■ Novemb
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is
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Sharon
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, please call
w inter
rs
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d
a
le
0
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p
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22
GP,
■ January 9, 2010
, LCSW, C
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a
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S
2
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B
a
u
n
■ Ja
5, 2010
-744-2932.
■ February 2, 2010 at 646
ork State
1
ASW-New Y .
N
y
b
d
■ February
ve
ro
p
has been ap
umber A-915
This program hours under approval n
ct
for 22.0 conta
NEW for 2009!
Walks in Brooklyn &
Manhattan
ional Meetings
Monday, July 13th
“Accepting the Ch
allenge — Commun
ications”
Speakers: Chapte
r Education Staff
Monday, August 10th
“Accepting the Ch
allenge —
Maximizing Your
Ability to be Helpfu
l”
Speakers: Chapte
r Education Staff
Monday, Septembe th
r 14
“Occupational Th
erapy for Everyday
Activities”
Speaker: Sharon M
artinez
Fo
r more information,
see pages 62 & 63
Caring for a loved one with
Alzheimer’s Disease (AD)?
We want to better understand the experience
of Latino family caregivers of patients with
Alzheimer’s disease.
If you are Latino, caring for a loved one with AD,
and interested in discussing your experience,
please contact
Dr. Caroline Gelman at 212-992-9731 or
at [email protected].
You will be compensated $40 for your participation.
visit our Education
Calendar
on pages 32 & 33.
h
Go Greencwit
alzny
nment and
For the enviro
in these
to save money
es, please
economic tim
l
ing an e-mai
consider send
g
e, mailin
with your nam
mail address
address and ee-News) to
(subject line:
yc.org
abaksh@alzn
iving our
to begin rece
ews
quarterly e-N
inbox!
r
u
delivered to yo

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