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My grandfather has Alzheimer’s disease and the Chapter has been very helpful in providing us
with a great deal of information & support. I’d like to give back but don’t know what my options are. What can I do?—
Grateful In Manhattan
Dear Grateful,
It’s wonderful to hear you are interested in giving back
and getting involved. There are a number of ways for you to
do so. Here are a few possibilities to help get you started.
At the Chapter
The NYC Chapter regularly recruits volunteers for
a variety of opportunities. To learn more about current
openings, please click here.
Advocate
The Association is always in need of people interested
in becoming more involved in championing our advocacy
efforts. Advocacy can include visiting elected officials to
speak about the need for more comprehensive services and
increased funding for research. Advocacy can also include
organizing grass-roots-level work to spread the word about
Alzheimer’s disease and other dementias to help increase
awareness and visibility. If you are interested in learning
more about the Chapter’s advocacy efforts, please contact
our 24-hour Helpline at 800-272-3900 or click here to register online and become a local advocate.
Clinical Trials
When a person with dementia participates in a clinical
trial, they are a member of one of two groups: they receive
either an experimental medication or a placebo. Both
groups are vital to the understanding of how effective new
medications are in treating the symptoms of dementia.
Without participants in both groups, it’s incredibly difficult
to understand the efficacy of these new medications.
Talking with the person for whom you’re caring about their
willingness to participate in a clinical trial may be a way for
you to give back. Your role will certainly be different from
theirs, but most if not all clinical trials require a caregiver
to be involved to bring the person with dementia to their
appointments, ensure medication compliance, and report on the effects of the medication on the person while at
home. You can find more information about current
clinical trials here.
Longitudinal Studies
If you would like to be more actively involved, consider
joining a longitudinal study, which enrolls people without a
diagnosis of dementia. These studies help scientists to work
toward new breakthroughs for treatment or prevention, as
well as to improve ways to diagnose the disease and monitor
its progression. The more we learn about healthy brain
aging, the richer is our understanding of brains affected
by dementia. These studies enable scientists to potentially
identify new risk factors and possible causes of the disease.
Participating in a longitudinal study is a long-term
commitment, but can help some of these new treatments,
preventive strategies and diagnostic tools become a reality.
One such study is the Einstein Aging Study at the Albert
Einstein College of Medicine. For more information about
the study, visit www.einstein.yu.edu/eas/. You can also
contact Mindy Katz at mindy.
katz@einstein.yu.edu.
For studies at NYU,
Columbia University or
Mount Sinai School of
Medicine, see the NYCARE
section of this newsletter.
If you’re currently caring
for someone with this disease,
spend some time evaluating if
this is the best time for you to
commit to volunteering with
the Association. You may
have enough on your plate.
However, if you choose to become more involved, we thank
you for your support and your commitment to the fight to
end Alzheimer’s disease. For more information about any
of the options here, you can also call our 24-hour Helpline
at 800-272-3900.
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