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From The Program Director
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Dear Readers,
A s 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.
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:
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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 19-
year 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
helpline@alznyc.org.
Thank you.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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