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Early-Stage Memory Disorders Forum
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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 fi nances, 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 person than before I walked in. But, human contact is
the most important gain. There is no worse company for
memory loss than isolation.”
 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.
Please visit www.alznyc.org/store to order your copy of “Still Alice.”
— Erin Farrell and Susan Sugarman
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