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Alzheimer's Disease: Find Out How You Can Help, or Get Help, During World Alzheimer's Month

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Alzheimer's Association/John BurwellAlzheimer's Association/John BurwellMore than 35 million people worldwide are living with Alzheimers, a fatal disease without a way to prevent, cure or even slow its progression. With the help of NYPL, Alzheimer's Association, New York City Chapter would like to raise awareness about this devastating disease. September, World Alzheimer's Month, is your chance to join the global fight against Alzheimer's disease. Visit alznyc.org/worldalzheimersmonth for more information and show your support by wearing purple with a purpose on Alzheimer's Action Day —September 21.

We've asked Jed Levine, Executive V.P. and Director of Programs & Services for the Alzheimer's Association's New York City Chapter, to write a guest blog post on this important topic.

"Helpline. How can I help you?"Alzheimer's Association/Chris KirzederAlzheimer's Association/Chris Kirzeder

When our Helpline staff completes a call, this is what they hear: "I'm so glad I called." "I wished I had called five years ago." "Stefanie, (or Maggie, or Ann, or Matt), you are so helpful and kind." "You are the only one who really took the time to listen." "I left a message and you called back. In five minutes!"

From the beginning, the New York City Chapter was committed to having a human and a humane response to every person who called. We knew that Alzheimer's didn't go to sleep at ten, or take the weekend off, so our goal was to ensure that family caregivers had our support 24/7. In the first decades of the Helpline, dedicated volunteers supported the staff and answered calls from home on nights and weekends. As the calls got more frequent and the callers became more sophisticated, the questions required increasing expertise. Today, our Helpline is staffed entirely by professionals, including Amy Torres, who recently joined us to provide expert guidance on residential and other long term care issues.

In 2004, when the National Alzheimer's Association expanded their Helpline, we partnered with them to ensure that professionals would answer the phone. Today, if you call after business hours, a staff member at the National Contact Center in Chicago answers the phone, provides immediate assistance, and sends the Chapters a report so we can follow up the next business day with information and support.

One principle has guided the Helpline for over 25 years; the power of the human connection. When a family member or a person with early stage dementia is in need of guidance, information, or is in emotional distress, one of the most powerful tools is being able to talk about it with a caring, knowledgeable professional. Our Helpline staff has intimate knowledge of necessary resources that support caregivers and persons with dementia; from where to order incontinence supplies, to the intricacies of the arcane and ever-changing Medicaid regulations. Our staff is familiar with every caregiving challenge, and has the time and expertise the think through creative solutions. One recent example was a caller who was having difficulty getting her father to eat. A simple suggestion to use sweetener on his food solved the problem, and now he is eating, enjoying it, and gaining much-needed weight.

We know our Helpline staff is resourceful, practical, smart and caring, but their greatest gift is knowing how to listen. Family caregivers and people with the disease need to talk. Talking helps clear the air, gives breathing space, helps release some of the tension and worry family caregivers carry with them all the time; whether they are aware of it or not. Talking heals a wounded heart. Talking allows people to take the next steps. It's very hard to develop a care plan, if you are filled with feelings of fear, sadness, anger and guilt. Talking and being heard helps everyone feel understood and not alone. Too often, friends and family members pull away. Family caregivers feel there is no one to talk to, no one who will understand. We will listen. We will understand.

In addition to our 24-hour Helpline, we sponsor over 120 support groups for caregivers and people in the early stages of Alzheimer's disease in the five boroughs offered at various times. All the support groups are free of charge, just like any of our programs and services. We love the wonders of modern day technology and social networking and we've made sure that Chapter staff has every state-of-the-art technological resource available, but in the end, nothing replaces the power of the human-to-human, voice-to-voice connection. That is the true value of our Helpline.

If you need our help, give us a call today. If you know someone who is struggling, give them this number; 800-272-3900. We are here to help 24 hours a day. Seven days a week. Our help will make a difference.

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