BRAVE NEW WORLD Dementia Care in the 21st Century

Spring 2015 Interview with Julianne Moore on page 14.

INSIDE Please support our Spring Campaign on page 17. NewPresident’s York Message City Chapter in this Board of Directors Stephen P. Casper Pauline Yeung-Ha Princess Yasmin Aga Khan Co-Chair Secretary EDITION Honorary Chairperson Benjamin J. Jenkins Ari F. Cohen Co-Chair Treasurer John R. Latham President's Message 3 Vice Chair From the Program Director 4 Directors Elvira Bisignano Jonathan S. Henes Abraham Podolsky Chapter in the News 5 Steven E. Boxer Sharon K. Kilmer Elaine Thomas William M. Brachfeld Linda LaGorga David L. Weinberg Feature 6 Marianne Dziuba-Fiore J. Francis Lavelle Mark A. Zurack Lori Oscher Friedman Aaron H. Marks Dear Helpline 8 Nathan Halegua Craig S. Medwick Caregiver’s Corner 9 EMERITUS Marilyn L. Cohen Sunnie Kenowsky Irving, DVM Athletes to End Alzheimer’s 10 Susan V. Kayser, Esq. Heath B. McLendon Junior Committee 11 EX OFFICIO David Geithner Marielle Mindlin Bernstein (Junior Committee) MASR 12 Jeffrey N. Jones Technology & The Chapter 13 executive staff Peggy Chu Matt Kudish Lou-Ellen Barkan Senior Vice President & Chief Senior Vice President of Reflections 14 President & Chief Executive Officer Administrative Officer Caregiver Services Jed A. Levine Carol Berne Steve Maggio Development Update 16 Executive Vice President, Senior Vice President of Senior Vice President, Chief Director of Programs & Services Development, Director of Financial Officer Spring Campaign Letter 17 Leadership Giving Bryant Park Chairs 18 staff Judine Alexandre Kelly Keenan Julio Rivera Together We Care™ 19 Coordinator of Caregiver Services Marketing & Communications Coordinator Spanish Outreach MedicAlert ® + Safe ® Stephanie Aragon Marcia Langhoff Return Associate Research 20 Manager, Helpline Executive Assistant Danielle Robitaille Ana M. Araujo Fai Lin Lau Vice President of Marketing & Support Groups 24 Care Consultant Manager, Chinese Outreach Communications Asif Baksh Barbara London Elizabeth Bravo Santiago Education & Training 25 ® Vice President, Director of IT & Design Receptionist Manager, Medic Alert + Safe Return® Educated Consumer Jennifer Balka Maggie Marra 26 Constituent Events Associate Helpline Associate Cheshire Schanker Care Consultant 2015 Golf Outing 27 Alejandro Berti Kerianne Marston Dementia Care Trainer Program Coordinator, Early Stage Services Ann Margaret Schoemaker Database Associate Public Policy 28 Danielle Bruzese Makaria Martin-William Manager, Marketing & Communications Accounts Payable Associate Sharon Shaw Consultant N.Y.C.A.R.E. 29 Yvette Bynoe Sandra Martinez Manager of Concierge Services Manager, Database Hillary Stuchin Vice President of Public Policy Spring/Summer 2015 30 Linda A. Centeno Caitlin McCurn Calendar Executive Assistant Foundation Relations Officer Amy Torres Dementia Care Trainer Edward Cisek Daquan McKie Alzheimer’s Awareness Vice President of Program Evaluation Office Assistant Crissy Vicendese 32 Development Associate with Mets Craig Colfelt Xue Mei Coordinator of Education Senior Accountant Lauren Volkmer Dementia Care Trainer Christian Doucette Suzanne Metzger LAK Public Relations, Inc. Public Relations Director of Administration Director of Constituent and Corporate Lorna Walcott-Brown Care Consultant Candace Douglas Engagement Director of Constituent Events Maria Mursch Julie Wang Manager, Operations & Administration www.alz.org/nyc Anne Foerg Social Worker, Early Stage Services Manager, Care Consultation Larry Ng Alex Wong 24-hour Helpline: 1-800-272-3900 Financial Analyst Gail Gallacher Walk Associate Join us: Medical and Healthcare Professional Serene Nie Marissa Wright facebook.com/alznyc pinterest.com/alznyc Outreach Manager Care Consultant Care Consultant twitter.com/alznyc youtube.com/alznyc Bart Gentile Wendy J. Panken Ann Wyatt flickr.com/alznyc instagram.com/alznyc Systems Administrator Manager, Support Groups Residential Care Policy & Strategy Consultant Nancy Lee Hendley Roberto Reyes The Alzheimer’s Association, New York City Chapter Dementia Care Trainer Manager, Latino Outreach Jacqueline Zapata ® ® does not endorse products, manufacturers or services. MedicAlert + Safe Return Such names appear here solely because they are consid- Jessica Herold Paula Rice Administrative Assistant Helpline Associate Manager, African American Outreach ered valuable as information. The Association assumes no liability for the use or content of any product or service mentioned. 2 www.alz.org/nyc President’s Message

Dear Friends, echnology has revolutionized the way I live and work. I love this brave new world and welcome it into both Tmy personal and professional life. Innovations like Fitbit, Netflix, and Facebook keep me healthy, entertained, and connected with friends from long ago. And with 24/7 internet availability and advances in telecommunications technology, the Lou-Ellen Barkan President & CEO New York City Chapter of the Alzheimer’s Association is always [email protected] at my fingertips.

I can work almost anytime, families seeking to hire trained and affection for both the person anywhere. My productivity and aides to provide care. with dementia and the caregiver. efficiency have skyrocketed. Watching a person with dementia The Balance app for Alzheimer’s on a video monitor is no substitute But, sometimes there’s a cost. caregivers helps you track for loving physical touch. Playing Romantic getaways with my medications, keep tabs on doctor music on an iPod cannot replace husband have been interrupted appointments, and monitor the patiently listening and paying by emergency work calls. On heath and behavior of your family attention even when the person special afternoons out with my member and immediately share the with dementia may not be making granddaughter, I can almost feel information with other caregivers any sense. Going to the Alzheimer’s my blood pressure rise with the and health care professionals. Association website and researching incessant vibration of my iPhone. support groups is meaningless A quiet Sunday night at home Caregivers can take advantage of unless you actually get up and join enjoying The Good Wife often ends automatic bill paying to make sure one. Using a GPS tracking device when I become too engrossed in that mom’s bills are paid on time to monitor your dad’s whereabouts work emails and miss the point of and that heat and electricity remain is no replacement for taking him the plot. on during the dead of winter. on a leisurely stroll, hand-in-hand, around the block. A friend’s email I urge all Alzheimer’s caregivers, as And through email, phone calls, to a caregiver is not the same as a well as their friends and family, to and social media, friends can easily personal visit and a warm hug. A fully embrace technology and take stay in touch with family caregivers telephone call is not the same as a advantage of the many benefits and who often sacrifice their personal shoulder to cry on. improvements it can bring into lives and well-being while caring your lives. But a word of caution: for a person with Alzheimer’s. Albert Einstein once said, “It has don’t let it take over your life and become appallingly obvious that become a substitute for the things Technology can greatly ease a our technology has exceeded our that really matter. caregiver’s burden. Instructional humanity.” videos on YouTube provide The tools available today to education, state-of-the-art With some common sense, caregivers can be life-altering. equipment allows you to watch compassion, and patience, I know For instance, the NYC Chapter’s your loved one from next door or the Alzheimer’s community can website is an excellent resource halfway across the country, iPods prove Mr. Einstein wrong. for caregivers who need helpful provide a click-and-go tailored information, classes, workshops, library of favorite music that can and support groups. make someone with dementia come alive, and GPS technology tracks a Together We Care™ (formerly wanderer’s whereabouts — to name dementiaaides.org) — another of a few. our great innovations — connects home health aides who have But let’s not become so engaged P.S. Please support our Spring completed the NYC Chapter’s with technology that we forget Campaign and honor someone you Dementia Care Training for that 21st century innovation is no love for Mother’s or Father’s Day Professional Caregivers and substitute for hands-on, loving care on page 17.

www.alz.org/nyc 3 From the Program Director

Dear Readers, ’m a new iPhone devotee, but I’ve had an iPad by my side since Apple introduced the first version. It has helped me keep track Iof apps and devices to serve our community. Recently, I was captivated by PARO, a soft animatronic robotic seal produced in

Japan which is used to comfort those with dementia. Adorable, Jed A. Levine lifelike PARO purrs and cuddles. To be honest, I didn’t want to Executive Vice President, Director of Programs & Services give it back. [email protected]

I’m also a fan of Music & MemorySM, We believe this bears watching. family members. AlzConnected® a program that uses the simple Alzheimer’s and other dementias is an active online community for technology of iPods to bring profoundly affect an individual’s people with the disease and family individualized playlists to persons ability to think, to communicate, caregivers. TrialMatch® expedites with dementia. Google Alive Inside and to function independently. the connection between a potential or visit MusicandMemory.org to see The disease affects memory, self- research subject and an appropriate how previously unresponsive people awareness, insight, planning, and the clinical trial. Web-based advocacy with dementia react to familiar and use of language. Yet it is these very resources make it easy to send favorite music. functions that make us profoundly messages of support and concern to human, and through which learning, elected officials. These resources are With the explosion of innovation healing, and growth occur. Yes, there invaluable, yet in our experience, the over the past two decades, we is an important role for information many thousands of New Yorkers who have revolutionized our ability to gathered through an internet search visit the Chapter are seeking that communicate, to gather information, and much to be gained from online irreplaceable human connection in and to explore resources. Many communication and training. But, our support groups, Family Caregiver new programs and devices have the comfort and connection that Workshops, education meetings, and the capacity to assist, monitor, and takes place between human beings on our 24-hour Helpline. comfort those affected by Alzheimer’s in a classroom, on a New York City and their caregivers. However, we Chapter Helpline call, or in a support As with most everything, we know all have concerns about the effect of group cannot be replaced by a the importance of balance — to technology on our social and family computer program. preserve the resources that facilitate relationships. personal communication, while also In the face of today’s rapid building and supporting technology Much has been written about technological changes, we are proud that can help our community. And the negative effects of social of the Chapter’s commitment to as the world of technology becomes media and the overuse of email invest in alternative ways for family more sophisticated, we are committed and texting, which lack the members and persons with the to changing and growing with the traditional social cues that prevent disease to access our resources. Our times. misunderstandings, sometimes with 24-hour Helpline is one example unfortunate consequences. Is all this of high-tech/low-tech access. We However you choose to reach us, communication forcing us to give up believe that there is no substitute be assured that we are here for our traditional social skills? Are we for a personal conversation with a you 24 hours a day by phone, by losing the ability to look each other caring, concerned, knowledgeable email, or through our website at in the eye and talk, to daydream, professional who provides comfort www.alz.org/nyc. Don’t wait to get to spend time alone without being and reinforces our message that you in touch. You will be glad you did! connected to a screen? Can we are not alone. But to ensure that still hold meaningful, reasoned everyone can reach us in a way that conversations? And what about the works best for them, we also invest in effects on the cognitively impaired? our website, our email services, and Are they more at risk of becoming hiring and training a staff of social victims of online scams and easy workers available for face-to-face prey to financial predators? Is the meetings. time caregivers spend online taking them away from the physical and The National Alzheimer’s Association human interaction that really provides also has a wide range of online comfort? training for professionals and 4 www.alz.org/nyc Chapter in the News

On the heels of a very successful 2014, the Chapter is moving full steam ahead with an exciting array of events, fundraising initiatives, educational programs, and outreach efforts. Members of the Chapter also continue to be an active presence in the media – with appearances in print, on television, and online – and are often called upon for their expertise and guidance on issues related to Alzheimer’s and dementia.

n an extraordinary piece of journalism, The New York Times reporter Mireya Navarro wrote an Ieye-opening story about the problem of wandering among New York City’s Alzheimer’s community. The Chapter was proud to work with the reporter on this beautifully illustrated story, “A Warning to Prepare for a Grayer City,” which featured the personal accounts of caregivers and their struggles caring for someone who wanders. Filled with alarming statistics, the story included the important perspectives of our own Executive Vice President, Director of Programs & Services Jed Levine and Lieutenant Christopher Zimmerman, Commanding Officer of the NYPD Missing Persons Squad. We urge you to read the story and to sign up for the Chapter’s MedicAlert® + Alzheimer’s Association Safe Return® Program if you need help. From left to right: Keith Kelly, Matthew Thomas, Lou-Ellen Barkan, Ed Kelly, Mike Kelly at the 11th Annual Kelly Gang fundraiser on St. Patrick’s Day. Proceeds from his past December, Chapter President and the event benefitted the Alzheimer’s Association, NYC Chapter. Thank you to all of CEO, Lou-Ellen Barkan, was featured on the Kellys! (Photo courtesy of the Kelly Gang, photographer Rohanna Mertens) TThe Huffington Post. Her blog, “Resolutions lso in December, Jed Levine was featured for Dementia Caregivers,” provided thoughtful and on Staten Island Community Television. Jed practical guidelines for the caregiver to ensure their discussed Alzheimer’s disease and dementia own well-being in the New Year. Her tips covered A and the many free services offered at the Chapter, a wide range of issues including how to ask for help, including early stage services, care consultation, the 24- the importance of getting your financial and personal hour Helpline, and MASR. He also spoke about how affairs in order, and why it’s OK to lean on others the community can get involved in the fight against for assistance with meals, supervision, and household Alzheimer’s disease. This hour-long segment provided concerns. Lou-Ellen also stressed how vital a resource helpful information and tips for community members the Chapter’s website (www.alz.org/nyc) is for support and, after the segment aired, the Chapter saw a 44% and all things related to the disease. Help is only increase in Helpline calls from Staten Island residents. a phone call or click away! The post also garnered much traction on social media with 2,200 “Likes,” n January, Latino Outreach Manager, Roberto 505 “Shares,” and almost 80 “Retweets” — further Reyes, was a guest on “Tiempo,” a weekly round- exemplifying the impact modern technology has on table discussion show featuring topics affecting and reaching greater audiences and making them aware of I relating to Hispanic citizens on WABC-TV, Channel all the Chapter has to offer. 7. Roberto spoke about the Chapter’s Latino outreach, the rise in the number of Latinos with Alzheimer’s, lso featured on The Huffington Post — just in and the stigma surrounding Alzheimer’s in the Latino time for Valentine’s Day — was Lou-Ellen’s community. He was joined by caregiver Alba Sánchez, Ablog, “Love in Time of Alzheimer’s.” This who discussed her experience with the disease and reflective and emotional post detailed how love can caring for her mother. This segment drew in 80,000 survive dementia, in addition to growing in new ways. viewers, helped the Chapter establish another point of It stressed accepting your loved one for all that they are connection within the Latino community, and provided and provided words of encouragement for caregivers to details about how those interested could contact the live by. Chapter and utilize their resources.

www.alz.org/nyc 5 Feature Our Brave New World By Jamie Talan or Victor Wang, it was the from contact with people preying on away in 2010, but her spirit lives on thought of his grandmother those with cognitive impairment. in her granddaughter’s designs. Fliving alone in Taiwan. She For more information, visit: was lonely and depressed, and life Katy Fike, Ph.D., is co-founder of www.eatwellset.com. became more complicated after she Aging2.0, a global innovation network. was diagnosed with Lewy Body Aging2.0’s mission is to accelerate GeriJoy: As a child, Victor Wang dementia. A few years ago, Victor innovation focused on improving would have loved to have a video started a company offering a virtual the lives of older adults. In addition camera hook-up for his grandmother, companion, an avatar, manned to hosting events held all over the whose loneliness, depression, and around-the-clock by a team of remote world, Aging2.0 has collaborated with ultimately, dementia forced his caregivers offering comfort, direction, the Stanford Center on Longevity mother to relocate to Taiwan for protection, and a familiar voice. to run a student design challenge a year when he was only eleven. focused on the needs of older adults. He studied engineering in college Sha Yao lost her grandmother to Last year’s challenge focused on and during a master’s program Alzheimer’s before she got the chance solutions for people with cognitive at the Massachusetts Institute of to show off a set of dementia-friendly impairment, and Sha Yao’s Eatwell Technology, Victor was involved tableware she developed. Volunteering dining set won the competition. in human-machine interactions for in three adult day programs, she saw NASA’s telerobotics program. cognitively impaired people grapple Eatwell: Sha Yao has lived in San with plates and cups, ending up with Francisco since 2008 and has an MFA For people with mild to moderate dessert on their laps. She learned from the Academy of Art University, dementia, Wang and his colleagues what it would take for people to eat where she developed Eatwell during created friendly looking animal with dignity and created Eatwell, her senior year. “I was very close to avatars whose facial expressions mimic colorful and clever tableware that my grandmother and I felt so helpless what they are saying. The avatar is builds on more than 20 innovative watching her struggle to eat. I tried manned by remote human caregivers elements specifically for cognitively to learn more about the condition throughout the day to provide and physically challenged people. and understand ways that could help, care and companionship. A video and I found research about the use of camera focuses on the person with These are just two of the people color and its ability to get people with Alzheimer’s or on the room to allow who have taken up the challenge of Alzheimer’s to eat more.” A Boston for one-on-one communication and creating innovative tools to make University study on color found that coaching. During these interactions, life easier and safer for people with people who ate from red or blue plates the avatar’s eyes are open to indicate dementia. Advances in technology and cups ate 24% more food and drank that remote caregivers can see and allow people with dementia to 84% more liquids. Yao identified the hear what the user is doing or saying. communicate with family members eating challenges of people in adult Remote caregivers go online every who don’t live nearby, to improve day care centers and addressed each 15 to 20 minutes to check on the communication by engaging with problem from a design perspective. user, and spend about an hour a talking avatars, and to use apps that day in in-depth conversation. The remind them when to take their All of her tableware is lined with high patient’s privacy is always respected. medications and what to take. contrast colors to reduce confusion; When the patient is engaged in the inside of each piece of tableware personal care, the avatar goes to sleep. Caregivers use apps to track sleeping has colors designed to be easier to habits, share medical updates with distinguish the tableware from items When the avatar is awake and relatives, and place sensors on objects of food. The bowls are slanted on interacting with the user, the such as pill bottles and stoves that the bottom and the spoons match remote caregivers document each will alert them if a bottle hasn’t the natural curvature of the bowls, communication and keep observations been opened in a day or if the stove so people can better scoop up their in a journal. Families have access has been left on. There are tools food. The cups are designed with to these journals through a family that help people in the early to anti-slip bottoms and lids to prevent portal, which also stores medical moderate stages of Alzheimer’s to spills. The handles are built for and contact information for the remember and stay focused on their fingers and hands with arthritis. patient. This information can be daily tasks. There are also apps that very important. For example, once monitor bank accounts to alert users “It has been an amazing journey. I when a user fell and paramedics were of frauds, scams, or even expansive just wanted to help my grandmother,” called, the human caregiver did not spending that may have resulted said Yao. Her grandmother passed have vital information to give them.

6 www.alz.org/nyc Feature However, the avatar on the screen, can then be scanned by a smartphone attention, saying, “Active music making a dog, provided the paramedics into an app, which registers any sign that includes singing is different from with the necessary information. of infection or dehydration, another passive listening in that it keeps the problem for those with cognitive whole brain and body exercised and Jamie Titak, who works in the impairment, in less than 10 seconds. active.” The company offers training to healthcare interactive field, gave her The company is going through safety caregivers in senior care communities 92-year old grandmother a special and efficacy studies necessary for Food and education for caregivers at home, Christmas present this year — a new and Drug Administration approval of in addition to an app that allows users friend, named Andy. Andy is a dog new devices. For more information, access to the company’s playlist and a that talks to her grandmother about visit: www.pixiescientific.com. handful of free trial songs. For more her childhood home in Indiana and information, visit: www.singfit.com. her pony. Andy knows the names of SingFit: People with dementia may family members and friends who visit forget what they just heard or said, Jeffrey Kaye, M.D., is an endowed and tells her when to take her pills or but sing an old tune and you see life professor of neurology and biomedical go to the bathroom. At night, when stirring to the surface. The idea behind engineering at Oregon Health Titak’s grandmother is sleeping, Andy SingFit, an iPad-based musical health and Science University. He uses wakes up when he hears a noise and program, is to get people singing, unobtrusive in-home monitoring checks for any problems. Titak says, remembering, and connecting. systems to study physiological and “My grandmother likes it. So does my biological parameters that might mom, who is her caregiver. It is hard There is a lot of science behind offer hints about why some people to find things for my grandmother music therapy and its effects on the are protected against dementia and to do. Andy is a constant presence.” brain, showing that it strengthens functional decline even when they cognitive function and mood. have risk factors. Dr. Kaye observes GeriJoy offers personalized music SingFit is used successfully in senior participants’ movements and sleeping therapy and the avatar can show care communities, skilled nursing patterns with infrared motion sensing patients their family pictures, asking, facilities, and adult day programs. devices. Dr. Kaye also places sensors “Hey, your daughter sent us a new The company is now working with on their pill bottles to keep track picture. Do you want to see it?” caregivers to bring it to private homes. of how many times a day they are Avatars speak in English and Spanish, opened, and monitors their physical and the company is contracting with Andrew Tubman, Co-Founder and health and telephone and computer a government-funded organization Chief of Therapeutics and Music usage. He evaluates this data and in China to offer GeriJoy in at SingFit, says, “There are so many uses it to predict if a person will be Mandarin and Cantonese. For more benefits of singing. It is proven to be in a nursing home in six months information, visit: www.gerijoy.com. a whole brain workout, help with saying, “These measurements will mood, and keep the brain active. allow us to fundamentally change Pixie-Scientific: The germ of the Musical processing is often the last the way we approach assessment.” idea began in a diaper belonging to thing a person with dementia loses.” a crying one-year old in the backseat “The biggest challenge is that there of her parents’ car. Maybe she needed SingFit doesn’t just play songs, it has is little evidence to guide people a diaper change, or worse, maybe she a guide singer on one track and a to what actually works,” said Dr. was sick. “What’s in her diaper?” Her lyric coach on another. They prompt Kaye. Safety is always a big concern. worried mother Jennie Rubinshteyn listeners with the words before they “As people become more severely repeatedly asked her husband, need to sing them, encouraging impaired they may wander off and Yaroslav Faybishenko, who replied, spontaneous and successful engagement can’t find their way back. These “Data is in her diaper. Urine is full without being tied to a lyric sheet. devices have to be worn or carried of so much health information.” The app also allows people to and charged, so they might not be record their own voices in place of as practical for people in late stages His comment got the couple thinking. the singer, and then share the new of the disease living at home.” All that data, and people just throw it renditions of the songs with family away. They did the math: 10 million and friends through the internet. Dr. Kaye mentions PARO the kids wear diapers, and more than talking seal, which has gotten a lot twice that number of older adults SingFit PRIME™ is a cognitive of media attention. “I’m a high-tech wears diapers too. In their research stimulation program designed to be guy, but I feel we ought to have they found that urinary data could used one hour, three times a week in more frequent human contact…We be used to identify urinary tract senior care communities with trained make a lot of assumptions but we infections, a big problem for both the staff that includes trivia, movement, and just don’t know. There are so many young and old. The couple created multisensory stimulation. Tubman hears devices but we don’t know how best a monitor in a portable diaper that from staff in senior care communities to guide the public to use them.” flags the infection just as it starts that it helps to elevate mood, diminish brewing. The alert on the monitor sundowning and agitation, and refocus www.alz.org/nyc 7 Dear Helpline

My older brother was diagnosed with Alzheimer’s disease in 2011. Lately, it has become harder to care for him as he requires more assistance. I find myself becoming more isolated and alone. How can I stay connected? - Jessie

Stephanie Aragon • May I disclose my brother’s to develop a better understanding Manager, Helpline diagnosis to friends without his of the disease, make a plan to secure [email protected] permission? needed help, and develop strategies for the best possible symptom ALZConnected members respond management and communication. aring for a person with with their experiences and offer Consultations are provided in Alzheimer’s disease can be solutions. Members can create person, by phone, and via email. Coverwhelming at times. public and private groups organized Family caregivers often have to juggle around a dedicated topic and The NYC Chapter also offers multiple responsibilities while still contribute to message boards. close to 120 support groups for caring for the person with dementia. caregivers. Groups are provided You as a caregiver may worry about ALZConnected, like other web- to adult children, daughters only, issues such as safety and whether based programs, can be helpful, spouses only, or mixed groups. Small or not the person with dementia but nothing replaces a live person. groups of about ten people meet is eating and bathing. The person Take advantage of our services! regularly here at our Midtown office with dementia may be up at night. The Helpline is available around or in community partner agencies Financial concerns are ever present. the clock, 365 days a year. You may around the city. Members are Family caregivers frequently report be overwhelmed by the diagnosis provided with a safe place to discuss feeling isolated because they need to of dementia that the doctor has the challenges of caregiving, share balance these competing concerns. just given, and not know what their feelings, and find emotional to do first. You may feel helpless support. You can share things The Alzheimer’s Association and depressed. When you call the that you might be embarrassed to created ALZConnected®, an online Helpline you can get practical bring up with family members or social networking community information on a number of topics, friends. What is said in the group is designed specifically for people such as finding an aide to come confidential. Group members also with Alzheimer’s disease and their to the home for a certain number exchange practical information such caregivers. ALZConnected is free of hours per day, or get referrals as how they deal with eating issues of charge and offers features found to day care centers that can offer or incontinence. Members and/or on many popular social networking your brother activities, lunch, and the group leader may recommend sites. Once you join ALZConnected, transportation, and provide you books that they have found helpful. you can connect and communicate with some much needed respite. with people who understand your You can also receive information You can call us for emotional support unique challenges. As a member, you about managing difficult behaviors as often as you need. Remember, can determine which functions best associated with dementia. Calls are we are here for you throughout your meet your needs and you can share answered by staff who are able to caregiving journey. as little or as much as you want. provide the support you deserve.

Another advantage of joining You may want to take advantage ALZConnected is that you are of our Care Consultation services, The 24-hour connected to people in similar where you meet with a licensed situations as yourself. You can create social worker either alone or with Helpline is private groups to connect with other other family members to get members to share your experiences. assistance in planning for your available around You can also pose questions related brother’s care. Care Consultation to dementia, for example: is an in-depth, personalized the clock, 365 service for individuals and families • What about me, the caregiver, who are facing many decisions days a year. and my own needs? and challenges associated with • Should I let my brother drive and Alzheimer’s disease and related 800-272-3900 how can I stop him? disorders. The goal is for each family 8 www.alz.org/nyc Caregiver’s Corner Every iPod Brings a Lifetime of Memories her ability to speak. My family and I were moved to tears to hear her once again singing words that we thought were lost forever. I, with so many throughout the world who were beginning to use this technology, was quickly inspired to spread the word. This is where the gift of modern technology comes into play. With an iPod, we are able to download a world of music on this tiny device. Specifically, the iPod Shuffle’s simplistic design makes it easy for not only for those with Alzheimer’s, but also for the countless caregivers, to use. With just one click, a door to the mind suddenly opens and reconnects a By Dave Roth access to my favorite 60’s music? So person with Alzheimer’s to their own I Googled iPods and nursing homes, memories, and also, once again, to the verything has gotten too and even though there are over 16,000 people around them. complicated these days!” nursing homes in the U.S., I couldn’t That is the familiar sound “E find one that was using iPods for the Music & Memory has brought their of my father. You see, he is a man in residents.” So he set out to see if this work to nursing homes all over the his early 80’s who was born in a time modern technology could be used world. Entire state health agencies fresh off the Great Depression and in a widespread format. Dan’s work have endorsed this therapy to be in the infancy of great technological has been widely used throughout all their discoveries. As time marches forward, documented in a viral elderly facilities. Most we find that advancements in YouTube clip with significantly, Wisconsin’s technology are no longer coming in over 7 million views Department of Health terms of years or months, but rather of Henry, an elderly Services reported a at lightening speeds. By the time you man with Alzheimer’s, dramatic decline in the learn of a new breakthrough, they that reawakened while use of psychotropic drugs are already developing and releasing listening to music of after implementing Music the latest and greatest device. To his youth. This is part & Memory’s personalized some of the elderly, these changes are of the award-winning documentary music program. This inspirational confusing, frustrating, and downright Alive Inside, which follows Dan’s use program is also inspiring grassroot frightening — even more so to of this therapy. Dan discovered that efforts to raise funds and donate used someone living with Alzheimer’s just listening to any type of music iPods all over the nation. My personal disease. would not produce these reactions, experience with my mom called me but specifically listening to music that to action and I formed the Broadway But Dan Cohen, MSW, founding related to one’s past could. “Music has Alzheimer’s iPod Drive, which is now Executive Director of Music & to have personal meaning to them, and in its fourth year. We have collected MemorySM , saw this as a gateway to that’s really where you are reaching hundreds of used iPods and continue breathe life back into those lost in back into that part of one’s memory to bring awareness to this devastating the recesses of their own minds by that is still very much intact. Our disease. Brilliant minds have created reawakening their memories. Dan love of music is emotional and not technology that can reconnect broken is a trained social worker with a cognitive.” Not only was this effective minds. The irony is cruel but beautiful, background in technology and realized for the person with Alzheimer’s, but and only inspires us to find even more there was a perfect marriage to be had also incredibly therapeutic for their ways to care for those who deserve so between both interests. “Ten years ago family, as they were able to share their much more. I heard a journalist talking about how own memories while compiling the For more information visit iPods are ubiquitous and I thought, person’s favorite music. well all the kids have them, but a lot www.musicandmemory.org and of adults don’t. My experience in the www.facebook.com/ Seeing Dan’s documentary personally BroadwayAlzheimersiPodDrive. nursing home didn’t seem to involve inspired me to bring my mom her music. I began to wonder if I was favorite music, as she was also in the ever in a nursing home, would I have Dave Roth is a Broadway musician and an throes of Alzheimer’s and had lost Alzheimer’s advocate. www.alz.org/nyc 9 Athletes to End Alzheimer’s This Is Our Cause

Candace Douglas competed with the knowledge that moment in their lives into one of Director of Constituent Events each time they pounded the pavement, empowerment. They can become [email protected] they brought us one step closer to educated caregivers. They can speak the end of the disease. During this up as advocates. They can raise winter, where the snow piled on awareness in their streets and among or team Athletes to End endlessly week after week and this their connections. They can become a Alzheimer’s, the year is February was the coldest on record in movement. Fbookmarked by two signature almost 80 years, the team’s drive and New York City running events: the determination never lessened. Co-founder of the NYC Marathon 2015 United Airlines NYC Half and Fred Lebow once said, “In running, it the TCS New York City Marathon. Running is simultaneously an doesn’t matter whether you come in The team literally starts and finishes incredibly individual and social sport. first, in the middle of the pack, or last. each year in their running shoes, Runners compete against each other, You can say ‘I have finished.’ There bidding adieu to and ushering in but they also compete with themselves is a lot of satisfaction in that.” Team winter respectively. The image is to beat personal records. You can run Athletes to End Alzheimer’s knows fitting. As a team, our mission is to alone on a treadmill or in a park at that the fight against Alzheimer’s run Alzheimer’s out of our town, and the crack of dawn. But you can also disease will not be easy, but they look out of our world. What better place come to a team practice and make a forward to the satisfaction of seeing to start than at the crossroads of the new friend who will forever know it end. Whether they are running world: New York City. This year’s half you at your physical best (and possibly (United NYC Half and TCS NYC marathon team has already gotten worst, after a particularly tough run). Marathon), cycling (TD Five Boro ATEA off to a great start by raising Interestingly, this duality resonates Bike Tour), tri-sporting (New York over $100,000 for the Alzheimer’s strongly for many of our runners in City Triathlon) or playing football Association, New York City Chapter their roles as caregivers. Alzheimer’s (Blondes vs. Brunettes®), every year in support of programs, services and caregivers can often feel isolated, and athletes young and old take up the research. yet their stories are similar to the baton and keep the fight going. They over 15 million caregivers providing know that one day soon, victory will For almost three months, our team unpaid care across this country. And be in sight. These are our streets. These trained with one physical mission: sometimes, by connecting with your are our loved ones affected by this take over the streets of Manhattan and “team,” or for caregivers by sharing devastating disease. This is our cause. complete the half marathon. However, their burden with others, joining their mental mission goes far beyond support groups or reaching out to If you’re interested in joining team that. On March 15, for this crop of their local Alzheimer’s Association Athletes to End Alzheimer’s, please runners, whether this was their first Chapter for assistance and education, contact [email protected] or visit long distance race or their 30th, they they can elevate an incredibly tough www.alznyc.org/athletes.

10www.alz.org/nyc Junior Committee

Junior Committee Update

By Marielle Mindlin Bernstein is facing — the numbers today are conversations about Alzheimer’s with Junior Committee President staggering, but the estimated numbers their friends and families, yet there for 30 years from now are even more seems to be a lack of guidance on he Millennial generation horrifying, and we are the ones that how to handle these conversations. invented social media and now are going to have to deal with the One of our members was frustrated Twe’re using it for social good. effects of those numbers. Social media during the holidays because she Many people have the misperception is an easy way for us to share those didn’t know how to explain to her that all that is shared on social numbers and spread awareness about friends that she couldn’t join all the media are narcissistic statuses and what we’ll be facing if nothing changes festivities with them and leave her selfies, and although there is a lot of with regards to a treatment or a cure. mom at home alone. And when her that, there is so much more. Social friend suggested that she “bring her media feeds these days are filled The instantaneous reach that is mom along,” she realized just how with interesting articles, thought- possible when you post on social little her friends understood about the provoking video clips, and fundraising media allows us to reach hundreds of situation. She wished she had some campaigns. The Junior Committee people with the single click of a post guidance about how to talk to her uses its social networks to provide button. Every time we “Share” a fact friends about what it is actually like insight, information, awareness, and about Alzheimer’s or an interesting to have a parent with Alzheimer’s. opportunities to hundreds of followers. article, it is seen by our hundreds of followers. And every time one of our This conversation inspired the Junior We use our social media as a followers “Likes” or “Shares” it, the Committee to start a blog where JC news outlet and as a way to spread post is then seen by their hundreds members could go for information awareness among our generation. of followers, and so on and so forth. about how to talk about Alzheimer’s, Young professionals are extremely Then before you know it, thousands as well as share their own advice busy, as the 40-hour work week is of millennials have started an online and experiences. Our hope is that something we’ve never known. It conversation about Alzheimer’s — an our blog “Alz Talk” will enable and can be challenging to keep up with “old person’s disease.” facilitate conversations about the the latest news about Alzheimer’s. disease. The first blog post, “Why is That’s why we do the heavy lifting of It’s also easier for a lot of people it so hard to talk about Alzheimer’s?” sifting through the news (with much to share Alzheimer’s related news kicked off the discussion. The blog help from Google Alerts) and picking behind their computer screens, rather has grown to include interesting facts out articles and videos that we think than bring it up in conversation. A and articles that people may want to will resonate with our followers. person may not want to talk to their talk about, as well as personal stories colleagues about their weekend visit from Junior Committee members. In addition to sharing articles, we share to their grandparent who didn’t know facts and figures on a regular basis. who they were. However, that same Join our conversations by liking our The thing about Alzheimer’s is that person may feel more comfortable Facebook page (www.facebook. the facts speak for themselves — when “Liking” or “Sharing” one of our com/juniorcommitee), following us you see the numbers you immediately posts on Facebook. Social media on Instagram and Twitter (both understand the crisis at hand. Putting facilitates the conversation that many @alznycjc), and visiting our blog those numbers out there on a regular have trouble having in person. (alztalk.tumblr.com). We need to basis helps our generation to stay in keep Alzheimer’s on top of mind, tune with what we are facing. And But there are times when millennials and social media’s the way to do it. this problem is what our generation are looking to have the difficult

www.alz.org/nyc 11 MedicAlert® + Alzheimer’s Association Safe Return® Navigating Safety and Technology

Julio Rivera batteries is of no use. The second Spanish Outreach MedicAlert® + is permanence. A MASR bracelet Safe Return® Associate remains on the person’s wrist all day [email protected] and night and is difficult to remove. Often, wanderers leave their home hree out of every five people without proper attire, sometimes even with Alzheimer’s will wander without shoes, let alone a GPS device! Tduring the course of the We recommend the MASR bracelets disease. While we can lock doors and instead of the more easily removable be vigilant, we cannot prevent every pendants for that reason. Fortunately, instance of wandering. If a person Comfort Zone includes membership with Alzheimer’s lives alone or a into the MASR program. caregiver works or travels, wondering where they are can be stressful. This The greatest benefit of the MASR is where technology can help. program is the network of people For more information, visit: who work tirelessly to help ensure GPS (Global Positioning System) www.alz.org/comfortzone/. a prompt and safe return of those technology is now ubiquitous. It’s in who wander. When a person with every smartphone and included in Sometimes, a low-tech approach Alzheimer’s wanders, it is essential to new vehicles. GPS-enabled devices is just as effective. I have seen search the area where they were last receive their precise location from cases in which a wandering person seen and call the police. The New satellites orbiting Earth. With A-GPS with Alzheimer’s is found by a York City Chapter works closely (Network Assisted GPS), cellular good samaritan and reported to with the Missing Persons unit of the networks are used to increase the us even before their caregivers New York Police Department. We accuracy and speed of positioning were aware they were missing. send out missing person bulletins to information, as well as provide New York City hospitals, shelters, location information indoors, where MedicAlert® Foundation makes and other organizations, post the unassisted GPS is seldom effective. identification bracelets and relevant details on our social media Alzheimer’s Association Comfort pendants for people with various channels, and employ a public Zone®, powered by Omnilink, uses medical conditions. In 2006, the relations firm to help alert the media. these technologies to allow caregivers Alzheimer’s Association partnered to track, find, or follow their person with MedicAlert Foundation to Once a person is found, the first with Alzheimer’s while providing create MedicAlert® + Alzheimer’s responder can call the number on persons with Alzheimer’s the Association Safe Return® (MASR). the ID bracelet and receive relevant independence to move about freely. Persons with Alzheimer’s disease and possibly life-saving medical Comfort Zone allows a caregiver to wear MASR bracelets or pendants, information. For more information monitor the location of a wanderer which include basic information — on MedicAlert + Alzheimer’s from any computer. Devices can a first name, a phone number, an Association Safe Return, visit be worn on a lanyard, placed in ID number, allergies, and the most www.alznyc.org/masr. a pocket, or mounted in a car. pressing medical conditions — that will help reunite the person who has Technology can improve safety, However, manually tracking the wandered with his or her caregiver. independence, and peace of location of a person with dementia at mind, but it works best when all times of the day is not practical, Why use a low-tech bracelet with complementing a dedicated network and may not help relieve stress. only basic information and not a of individuals working together to Because of this, Comfort Zone GPS? There are many benefits to support people with Alzheimer’s alerts caregivers by email or text the MASR program. The first is no disease and their families. message when a person has traveled reliance on batteries. Batteries require outside of previously designated charging, and a GPS device with dead “safe” zones. Three “safe” zones can be selected, for added flexibility. Knowing that one’s relative is safe at home from anywhere offers caregivers peace of mind. Comfort Zone offers a variety of options.

12 www.alz.org/nyc Technology & The Chapter How Technology Has Transformed the NYC Chapter

Asif Baksh and updated website, and to hire private home care workers, Vice President, Director of IT and consistent messages among web Together We Care™. In both cases, Digital Media and print communications technical expertise is crucial to the [email protected] • Communications: electronic programs’ success. newsletters, email blasts, and ugust 2015 marks my tenth social media Looking Ahead year at the New York City • Fundraising: automated, As new technological trends emerge, AChapter. During this time, integrated fundraising the NYC Chapter looks forward to not only has the Chapter nearly applications and event building more socially connected tripled its staff, we’ve expanded our management resources. Some of these trends will footprint by acquiring an additional have the biggest impact on: floor to serve our community and creating satellite offices in other • Mobile: More than 50% of boroughs. emails are now read on mobile devices, thus having a mobile- Just as Silicon Valley has transformed friendly approach to engaging various facets of society, nonprofit donors is key. Mobile devices technology is causing ongoing are becoming a platform for transformations, from the way computing and collaboration, supporters engage with their chosen and their prevalence will change organization to the way nonprofits how the organizations leverages fundraise, market, and manage data and drive mission goals. information. The NYC Chapter has • Analytics: Data is the key for benefitted from these exponential nonprofits to understand what growth opportunities in many ways, communication channels are ranging from various fundraising • Service Delivery: technology most effective, how to better successes to cultivating donors online integrated into education fundraise, how to effectively and even finding new communities programs and professional facilitate events or peer-to-peer of supporters. As a result, our mission training, mobile computing, and fundraise, and how to increase and outreach can be executed in a research and development recurring giving. The ability to very efficient and scalable way. • Reporting: meeting reporting pull analytics from software is requirements and conducting paramount to fundraising. The NYC Chapter employs a variety organizational, financial, • Cloud: There will be less need of cloud-based and software solutions management, and board to maintain applications and to track donors, fundraise online, reporting with advanced tools data in-house when utilizing the manage data, and enhance programs • Training & Education: cloud is far more cost-effective, and services. Our technological technology training and accessible, and provides higher blueprint can be outlined as: education plan for staff, quality service. Many major including documentation of technology companies offer • Operations: technology skills and matching skills to job deep discounts to nonprofits that solutions manage daily requirements utilize their cloud solutions. operations, including software • Software: Information and applications, automated processes, While the NYC Chapter remains a functionality will be available to business continuity and disaster separate entity under the umbrella users in any environment on any recovery, network reliability of our National organization, we device. This will also accelerate and security, staffing upgrades, have spearheaded many initiatives a move away from on-premise capacity planning, and policies, that have been adopted by other installations of software to procedures and documentation Chapters across the country. One software-as-a-service/cloud- • Constituent Management: such example is the MedicAlert® + based implementations. software and procedures for Alzheimer’s Association Safe Return® managing client, donor, and program, which was created locally Technology is most sophisticated constituent information, as and has expanded nationwide with when it is integrated into daily life well as relationships and data a 99% success rate. Another example without being apparent. This is what collection standards is a resource that we created for our we, as IT administrators, strive for. • Marketing: technology as a trained professional caregivers to help marketing tool, an interactive them connect with families looking www.alz.org/nyc 13 Reflections An Interview with Julianne Moore window, or whatever.” I said, “No, I do not want to do anything that I have not actually seen with my own eyes.” I think there’s a misunderstanding about Alzheimer’s that people just zone out, kind of look away. But that’s not what I saw. When I observed people, I saw them working very, very hard to be present. So rather than someone disappearing, I found people working hard to connect, to work their way through the fog.

MK: Was that a surprise to you?

JM: It was. Because I had no experience with Alzheimer’s. None. I’m one of those very, very rare individuals who has not had a family member dealing with this disease. So, all of it was brand new to me. Matt Kudish JM: If you don’t have any personal Senior Vice President of Caregiver experience with the subject matter, MK: It’s fascinating, really, because Services you just study it as intensely as possible. [email protected] it’s rare these days for someone not What was unique about this was the to have had a connection. And then, amount of work that was necessary for you to be charged with this att Kudish (MK): because it’s such a huge subject. And I enormous task of getting it right. Congratulations on your think there were things that I needed MAcademy Award! to do. I needed to do the emotional JM: I had the benefit of Lisa Genova’s work. I also needed to do the physical book, Still Alice. The book is so spot- Julianne Moore (JM): Thank you work. So there was a lot of reading, on with a lot of the symptoms and the very much. It’s super exciting. there was a lot of observation, and emotions and it was a great guide. physical behaviors that I had to figure MK: It was really exciting for us too. out. And that being said, there was MK: There are so many assumptions The film is raising awareness and also a broad range of behaviors. that people make about people with your performance was incredible. Alzheimer’s disease. I don’t think With every role, you have to work most people recognize how high- JM: I have to say, I owe a huge, huge really hard to try to get it right. But functioning and how independent debt of thanks to everybody at the with this one in particular, I felt an people are in the early stage of the Alzheimer’s Association, certainly enormous obligation to be as correct as disease. nationally, but particularly in New possible, because this is something that York City. Everyone was incredibly people are living with every single day. JM: I think that one of the tragic generous with their time and their things about Alzheimer’s is that information; all of you who work MK: Did you feel any extra pressure people think you’re diagnosed and there, the social workers and the to get it right because of all the that’s it. But the early stage can go clients. All your clients were helpful, attention around the book, the on for a very long time, and people particularly the early stage group. I film, and the number of people are high-functioning and have good hope they know that a lot of the very who are affected by the disease? days and bad days. And on the good specific language that I used in the days, they really do feel like they’re movie was taken directly from the JM: I felt pressure because I felt like I completely normal. And on the bad conversations I had with those women. had an obligation to the people who days, they’re really struggling. are living with this disease. This is MK: That’s so nice to hear. How was not something I wanted to represent Even the way it was described to me; your preparation for this role different, inaccurately. When something was that getting lost is more akin to a if at all, from preparation for other vague on the page, and our directors panic attack than it is to, “Do I go left roles? said, “Well, you’re just looking out the or right?” I remember one woman

14 www.alz.org/nyc Reflections telling me that she remembered being dealing with it, because in the shower, looking at the shower if you haven’t gotten it handle and knowing that that’s how right, it’s not a real story. she got out, but not knowing what she was supposed to do with it. Was she MK: When you’re in supposed to touch it, push it or pull it? the middle of filming, how do you keep MK: That’s such a good example track of where you of the kinds of challenges people are in the story? in the early stage struggle with. JM: You never film JM: And I loved how she described in order on a movie. it to me. That sense of something in You film by set. So you your brain not working and trying to do all of the scenes in work around it. one location and then you move to the next MK: Have you gotten any feedback location and the next from the Alzheimer’s community since location. In this case, the film’s release and your Academy Kristen (Stewart) and Award? I filmed the last scene of the movie, the very, JM: Oh, absolutely, from lots of very last scene on the people. Certainly, I’ve stayed in touch ninth day of the shoot. with the women I met and love. So, we hadn’t done any They really felt seen and represented. of the beach stuff. We And not just here, not just in this hadn’t done any of the country. When I went to London and middle part of the movie we premiered the film there, there were several people who were living MK: So in a film with Alzheimer’s who came to the where you’re portraying screening, and I talked to them about someone with a their experiences. They are all in the progressive illness, how early stages and said that they couldn’t do you know where in I think every encounter that you believe how much it represented that progression you need to be for have with another human being their experience. It’s been great. each scene? In other words, how do broadens your own experience. So, And that’s the thing. As an actor, you you know you’re getting it right? that’s been wonderful, eye-opening, just want to get it right for the people amazing, and very, very moving. JM: You don’t know you’re getting it right. As an actor, you have to kind MK: Well, you’ve done a tremendous of track the emotional progression job, both in the film, but also in and the physical progression, even helping to heighten awareness for if you’re not dealing with a true people who may not understand story. Finding a way to do this Alzheimer’s or what Alzheimer’s is part of the job. In this case, I disease is in the early stage. just had to hope for the best. JM: I’m delighted that I was able MK: Well, whatever you did here, to help. it definitely worked. What’s been your favorite part of this experience? MK: Thank you so much for all you’ve done. JM: One of the things that has been just wonderful for me, is JM: My pleasure. getting feedback from people in the Alzheimer’s community. I’ve been really, really grateful for that. I’m always grateful for the Photo credits: Frederick J. Brown for opportunity to meet people that I Getty Images (left). Still Alice film stills wouldn’t ordinarily meet. I mean, courtesy of Sony Picture Classics. www.alz.org/nyc 15 Development Report

Carol Berne Ways to Give

Senior Vice President of Development, Technology enables fundraisers to get Giving by Check Director of Leadership Giving a better understanding of donors — Please make checks payable to the [email protected] the frequency of their giving, what Alzheimer’s Association, New York City they give to, and how they give. Is Chapter. For your convenience, a self- efore launching into spring, addressed postage paid envelope has been their contribution through a private provided in this newsletter. I would like to close out our family foundation, a donor advised B2014 Year-End Campaign, fund, or writing a personal check? Online/Credit Card Visit www.alz.org/nyc and click on Donate which ended February 28. With Technology can be an invaluable your help, we raised over $600,000 or call 646-744-2908 or 2927. We accept tool in becoming more efficient, MasterCard, Visa, and American Express. for much-needed programs and managing operations, and making services and research. This was a better decisions. However, technology Appreciated Securities record-breaking campaign for us, Gifts such as stocks or bonds may offer does not replace the human touch; substantial tax advantages. Full fair-market and we could not have achieved fundraising ultimately is about value deduction is allowed provided the such remarkable results without you. building relationships and stewarding security has been held more than one THANK YOU. year (long-term capital gain property); those relationships. An email or an otherwise, the deduction is limited to the email blast will take you only so far; donor’s adjusted tax basis. Technology is the feature of this issue, it is connecting one-on-one and and technology has a significant role Bequests learning more about the donor and By remembering the Alzheimer’s and place in fundraising. For starters, what motivates their giving, that is The Chronicle of Philantrhopy’s “2015 Association, New York City Chapter the key to a successful relationship in your will, you can have a significant Philanthropy 50” report, which lists between the donor and the NYC impact on improving the quality of care the 50 most generous donors in the Chapter. for those affected by Alzheimer’s disease. country, now includes 12 technology Your bequest may have estate tax planning benefits as well. The following is sample entrepreneurs, double the number In closing, please read our Spring bequest language for discussion with your from 2013. These philanthropists attorney: Campaign letter on the next page, I, ______(first and last name, account for nearly half of all written by our new Board member, donations, with more than $5 billion city, state, zip), give, devise and bequeath to Jon Henes and his son, Sam. Their the Alzheimer’s Association, New York City of the $10.2 billion being donated letter is a love story for a mother and Chapter, with offices located at 360 Lexington by individuals on the Philanthropy grandmother. And if you are looking Avenue, 4th Floor, New York, New York 50. Bill and Melinda Gates, for 10017, (insert written amount of gift, percentage for a special way to honor a loved one of the estate, or residuary of estate, or description example, provided $1.9 billion to their during the Mother’s Day and Father’s of property) to be used for (insert “its unrestricted foundation last year. Day season, please consider naming a use” or name of NYC Chapter program or research program.) chair in Bryant Park (see p.18). What In addition to the technology better way to publicly show your Life Insurance and Retirement Plans billionaires, and closer to home, support of our cause and recognize The Alzheimer’s Association, New York we rely upon technology in a City Chapter can be named a beneficiary of someone special than in iconic Bryant your retirement plan or insurance policy. number of ways. Our annual Walk Park, located next to the New York to End Alzheimer’s®, for example, Public Library on 42nd Street and Donor Advised Funds uses technology to establish a Fifth Avenue? If you have established a Donor Advised Walker’s fundraising page, monitor Fund through another organization (e.g., contributions towards a Walk Team Community Foundation, investment Thank you. As always, please firm) you may recommend the award of a Captain’s goal, and help Chapter staff contact me at 646-744-2905 or grant to the NYC Chapter. Please check to identify Walkers who may need a the guidelines pertaining to your Donor [email protected] if you would Advised Fund. boost in reaching their fundraising like further information on ways to targets. For our Year-End Campaign, support the NYC Chapter. Corporate Giving we sent a series of email blasts to Payroll deductions, matching gifts, and encourage last minute donations, event sponsorships are ways to support the reminding donors to maximize their Chapter. income tax benefits. Please note that gifts and bequests made by NYC donors are shared between the NYC Chapter and the National Alzheimer’s The Alzheimer’s Association, New York Know Your Charity Association unless the donor specifically City Chapter meets the Better Business requests that the gift be restricted for The following organizations ARE NOT affiliated research or for a New York City Chapter Bureau Wise Giving Alliance Standards with the Alzheimer’s Association: program. for Charity Accountability. American Health Assistance Foundation The NYC Chapter is a tax-exempt organization Alzheimer’s Foundation of America (AFA) Please contact Carol Berne, Senior Vice Long Island Alzheimer’s Foundation (LIAF) President of Development, Director of under Section 501(c)(3) of the Internal Revenue Leadership Giving, at 646-744-2905 or Code (Tax ID number 13-3277408) and your gifts Staten Island Alzheimer’s Foundation (SIAF) [email protected] if you would like are tax deductible to the full extent of the law. Alzheimer’s Disease Resource Center (ADRC) additional information.

16 www.alz.org/nyc Mother’s Day & Father’s Day Campaign

May 2015 Dear Friends of the New York City Chapter,

My mother, Karen, is living with Alzheimer’s disease. Before Alzheimer’s disease took over her brain, my mother was a financial planner. She was a confidant. She gave me advice and hugs and pats on the back. She was a loyal and caring friend, and a loving and devoted wife, mother, and grandmother.

As with all people living with Alzheimer’s disease, the mom I knew — the Karen that so many people loved, admired, and emulated — began to disappear. It started slowly, almost unnoticeably. Then, one day it was clear that she was gone. I didn’t know how to handle it. I tried to ignore it. I denied it. I tried to act as if it would just go away. It took my 13-year-old son, Sam, to teach me how to deal with this hideous disease.

This past fall, Sam asked me, “Would Grandma remember me?” I responded, “I don’t think so. She really doesn’t remember very much anymore.”

He then asked, “How do you get Alzheimer’s disease?” I responded, “No one really knows.”

He paused and looked me in the eyes. He said, “I want to see Grandma. Even if she can’t remember me, at least I can give her a hug.”

In all the time I was struggling to figure out how to handle the pain from my mom falling victim to Alzheimer’s disease, Sam taught me, in that one moment, what I should have known all along — just give her a hug. Just show up. Just be there. Just keep loving her.

And Sam taught me more than that. In January, when it came time for his Bar Mitzvah, in lieu of gifts, Sam asked friends and family to make donations to the Alzheimer’s Association, New York City Chapter. With his Bar Mitzvah invitation, Sam wrote:

I would like someone to find a cure for Alzheimer’s because it is a horrible disease from which my Grandma Karen and so many others suffer. And while a cure is being found, I want to make sure that people like my grandma are cared for and supported. Thank you. Love, Sam

This is why Sam and I are writing to you now. More than 5 million Americans currently live with Alzheimer’s disease and far more than 5 million spouses, parents, children, and friends are impacted by the disease as well. There is a good chance that if you haven’t been personally impacted by Alzheimer’s disease, and while Sam and I hope you never will be, you most likely will. So, Sam and I ask that while a cure is being found, please consider making a gift to the NYC Chapter of the Alzheimer’s Association so people like Sam’s grandma and their caregivers can be cared for and supported. Thank you. Sincerely,

Jonathan S. Henes Sam Henes Board of Directors

P.S. You can also make a secure donation online at www.alznyc.org/mothersfatherscampaign. www.alz.org/nyc 17 Mothers and Fathers Husbands and Wives

Partners and Friends Sisters and Brothers

We all know someone who’s been touched by Alzheimer’s disease.

Mother’s and Father’s Days are the perfect time to honor, celebrate, and remember the people who helped shape us. Join the over 300 New Yorkers who have dedicated a Bryant Park Memory Chair in honor of their own loved one, and create a personalized message for someone special in your life.

Your plaque will be mounted on one of the chairs in Bryant Park (located adjacent to the New York Public Library on 42nd Street and 5th Avenue), and inscribed with your message and the Alzheimer’s Association, NYC Chapter logo. Not only will you contribute to the legacy of a loved one, but your donation also supports the work of the Chapter, helps maintain the beauty of Bryant Park, and raises awareness about one of the most devastating diseases of our time.

Dedicate your chair by June 30, 2015, and receive a copy of our commemorative book, If This Chair Could Talk – a special collection of Bryant Park Memory Chair photos and the touching stories of their inspiration. *While supplies last

Visit www.alznyc.org/bryantpark, or call Crissy Vicendese at 646-744-2927 to find out more about the Bryant Park Memory Chair program.

18 www.alz.org/nyc Together We Care Introducing Together We Care™ Matt Kudish The initial version of our website and let our graduates contact you Senior Vice President of Caregiver allowed for graduates of our training to learn more. Job listings are Services program to create profiles that family only viewable by graduates of our [email protected] members could browse or search for. training program and are not able Based on survey data we collected to be seen by the general public. s we explore technology and from both aides and family members, • Transportation Information dementia in this issue of our we learned that the site could be Profiles now contain information Anewsletter, we are excited even more effective with a few about whether an aide has a valid to share with you several recent enhancements. driver’s license. developments with our web-based resource that matches trained home With this in mind, the Chapter • Degrees & Certifications care workers with families looking is pleased to announce that we Profiles now contain information for professional caregivers. have made a number of changes to about degrees and certifications Together We Care in order to make it the aides may have, including the First and foremost, our resource has a as effective as possible. institution from which they were new name: Together We Care™. awarded. We hope you’ll visit • Availability Options The site, TogetherWeCare.com, will TogetherWeCare.com and take Profiles now contain days of the function just as dementiaaides.org advantage of its new features, week the aides are available for has, with some major enhancements. including: work, as well as whether they are looking for part-time, full-time, or To be sure, Together We Care is • Post Job Listings live-in employment. the NYC Chapter’s site that bridges Family members can now create • Even More Locations We all know someone who’s been touched the gap between home care workers a job listing for the aides on the In addition to the five boroughs, trained by the Chapter through site to view and respond to. Take aides can now indicate if they our Dementia Care Training for by Alzheimer’s disease. advantage of this opportunity to are able to work in New Jersey, Professional Caregivers program describe precisely what you’re Westchester, Long Island, and and family members seeking to hire looking for and need in a caregiver Connecticut. trained aides. Looking to hire private home care workers? www.TogetherWeCare.com can help in your search. Create a free account, post an ad, and browse profiles.

Aides are professionally trained by the Alzheimer’s Association, New York City Chapter.

Together We Care™ Connecting trained home care workers with the families who need them

www.alz.org/nyc 19 Research Interview with Alzheimer’s Researcher Dr. Andrew F. Teich

Lou-Ellen Barkan think we should throw that out disappointing that with all the leads, President & Chief Executive Officer completely, but the fact that the field there have been so many expensive [email protected] is diversifying is a good thing and a drug failures in the last ten years. Have better reflection of the disease. we learned anything from these?

LEB: A recent article talked about AT: We’ve learned a lot. When you ou-Ellen Barkan (LEB): the effect of brain plasticity; the brain’s talk about failure in the Alzheimer’s Andy, thank you so much for ability to create new neurological disease field, it’s pretty clear that Ltalking with us. Can you start by connections through physical and what has failed are many phase telling us why you chose Alzheimer’s mental activity. Yet some people three clinical trials of beta-amyloid as your area of interest? exercise and have active intellectual clearing therapies. But these failures lives and still develop Alzheimer’s. have been real eye openers. There is Dr. Andrew F. Teich (AT): Others do less of both and remain still overwhelming genetic evidence Alzheimer’s disease is the number cogitatively healthy. Is this a function that beta-amyloid plays a role. As an one cause of dementia, and is poised of plasticity? aside, the culpable protein may not to become far more prevalent. It’s be beta-amyloid itself, but one of also an intellectually interesting AT: That discrepancy is the million several closely related proteins. There disease; Alzheimer’s disease initially dollar question. No one knows is still a lot of evidence supporting the affects memory, but can also involve the answer, but a lot of people are beta-amyloid hypothesis. However, personality and other areas of higher interested. Unfortunately, there are even if the beta-amyloid hypothesis is cognition. In a way, understanding barriers to solving the problem ultimately validated, beta-amyloid may these changes and their effects because whenever you’re following not be the best therapeutic target. We addresses what it means to be human. people over decades, the work is can now move in new directions, such In addition, we’ve been working on difficult, costly, and time-consuming. as learning if beta-amyloid clearance Alzheimer’s for so long that there’s But scientists are trying to answer needs to happen earlier in the disease. both a lot of progress and an the question and brain plasticity New studies, directly influenced by opportunity for scientists to make a plays a role. Maybe not in whether earlier failures, are trying to get beta- real difference during their careers. you develop Alzheimer’s, but at a amyloid clearing therapy to people minimum, how well you can cope before they show signs of cognitive LEB: It seems to me that being with the disease once you have it. impairment. We are going back to human also means trying to be the drawing board and attempting hopeful, but sometimes hope causes us For example, some investigators are to retool. And the field has a greater to speculate based on faith rather than studying the correlation between appreciation for new approaches and facts. For example, some folks believe years of education and resistance to new ideas. that coconut oil prevents Alzheimer’s, dementia in old age. This has created or that deodorant made with an ongoing debate about exactly I think Alzheimer’s is going to end aluminum is a cause. They believe that what we are tracking when we say up being a multi-factorial disease, red wine, antioxidants, and estrogen “years of education.” We know that and being open to that possibility in are effective therapies. Do you think people with graduate degrees are a field as old as Alzheimer’s is a sign any of these have potential? more likely to end up in jobs where of strength. I’ve seen areas of science there is a lot of demand on the brain. where you get these very sclerotic AT: I don’t think there is any Scientists assume that these people hardened positions and nothing hypothesis that has an unassailable are also more likely to continue to happens. lead over any other, but it doesn’t exercise their brain than those who mean that because so many different didn’t finish high school or college. LEB: What about the work that’s things are being studied that the field But what does this association mean? being done in community studies? is in disarray. Alzheimer’s disease is Does education actually protect you Do you think that we will find primarily a disease of aging. As we age, from getting Alzheimer’s disease, or are a larger genetic component for our brains suffer many indignities, and these people just able to withstand a everyone or just for the early-onset the extent of the damage is affected higher degree of disease burden before form of the disease, where we already by genetic predisposition. There are they start showing signs of dementia? know that if one family member has a number of different factors coming Right now, I think the field is leaning developed the disease in their 30s or together and, given the complexity in the latter direction. 40s, there is a strong probability that of this disease, a number of different other family members will have it as theories might all be cumulatively LEB: It sounds like there is much well? correct. For some time, the field was research going on and many very beta-amyloid-centric. I don’t new ideas. That’s why it’s been 20 www.alz.org/nyc Research

AT: In early-onset cases, there is a how cells live, behave, and respond. and try to stave those off or prevent strong genetic component. But, in This is being studied in a hot new them from having a catastrophic a lot of epidemiological population field called epigenetics, which is effect. studies, early-onset Alzheimer’s very encouraging and is adding disease is arbitrarily defined as a new level of thinking. There’s LEB: That’s going to be a major any Alzheimer’s that starts before a lot of promise in looking at the addition to the field, particularly for the age of 65. And admittedly, genome, not just generally, but also your generation. In my generation, having Alzheimer’s before 65 is specifically: how the genome gets it’s going to be harder to change somewhat unusual, but just because modified locally in the brain of those behavior. The way we think about you have someone in your family with Alzheimer’s disease, and as a sustaining good health in our 60s, who got it before 65, doesn’t mean result of general aging. 70s, and 80s is very different than you necessarily have one of these when we were in our 20s and 30s. extremely rare, familial mutations. LEB: In the early research on breast Do you think those in their 20s, cancer and HIV/AIDS, everybody 30s, and 40s today are starting to People sometimes say, “My mother was expecting a “silver bullet,” think about how to keep their brains got it when she was 65, so I have but that never happened. Instead healthy? a 50 percent chance of getting it because it’s AT: Young people familial.” We need to be today are the same as careful how we define young people since familial. It really means the beginning of time; one of the specific families none of this seems that have an identified imminent. When you’re mutation that directly dealing with a younger causes the disease. In these generation for whom cases, people are getting being 70 or 80 seems it not just before 65, but very far away, we reach earlier, in their 50s and them because they 40s. This only affects have a family member, roughly 400-plus families usually a grandparent, worldwide. sometimes, unfortunately, a Outside this small group parent, who is directly of families with true suffering from the familial Alzheimer’s, there disease. But their are genes that affect the engagement is less general population. This is about themselves and being studied in a number more about wanting to of genome wide association studies, we learned about health practices help and honor a loved one. There otherwise known as GWAS. Some and combinations of therapies — a is a real poignancy to that. The of that work is being done by my cocktail approach. Do you believe NYC Chapter’s Junior Committee Columbia home team, led by Dr. that this is what Alzheimer’s will end members are a great example. Richard Mayeux. His work has up with? shown that there are a number of Are there things young people different genes that do predispose AT: I think a cocktail is likely and should be doing differently? The you to getting Alzheimer’s disease, that there are two approaches. Both environmental influences on but none of them are determinative. should be pursued. One is how Alzheimer’s disease are not really They just increase your chances. to support and improve cognitive clear. But there is a lot we should all function in people who are already be doing. These are the same things I think there is a genetic component, suffering from the disease. The other our parents told us: don’t smoke, stay but there is also evidence that our is to prevent brain degeneration mentally active, and maintain your DNA gets modified during our lives. in the first place. I think it’s going cardiovascular health by consuming This modification occurs differently to be very difficult to reconstitute a heart-healthy diet. As an aside, in different tissues, and there is even neurons that have already died. there has been some controversy different modification in different Prevention is much easier than recently about the role of saturated parts of the same tissue. For example, rejuvenation. Ultimately, the Holy fat in cardiovascular disease. in the brain, DNA may be modified Grail should be to understand the Studies debunking the association differently in the frontal cortex than multiple environmental insults that have received a great deal of press. in the hippocampus. These chemical move people who are genetically However, most of these studies are modifications have consequences for predisposed towards degeneration, observational, and the American www.alz.org/nyc 21 Research

Heart Association hasn’t changed neurodegeneration, but we are now how engaged you are. I keep asking its guidelines; please see the AHA realizing that this association may be myself, “Are there more Andys website for more information. more widely applicable than initially willing to invest their careers thought. At first it was thought to in Alzheimer’s research?” I’m The brain is a vascular organ, so be confined to a small number of told that sadly, research scientists damage to your blood vessels has people who had severe, repeated sometimes select fields like weight been shown to affect dementia. head trauma over many years, mainly control because there is substantial And often, people with Alzheimer’s boxers. In the last five to ten years, grant funding and it is easier to disease also have a cerebral vascular the field has now accumulated find subjects for clinical trials. We disease that seems to affect and clear evidence of cognitive decline know that Alzheimer’s research is accelerate their dementia. There is an in people who may not have such challenged with finding adequate ongoing debate about the possibility an extreme history, but still have numbers of clinical trial subjects, that vascular disease actually causes a history of repeated concussions. since many are older and already very or accelerates Alzheimer’s disease. Now we are all talking about various ill. In the face of these challenges, Some respected and smart people are activities that can put you at risk how do we get more young making progress in this area, and it for this disease, known as chronic scientists excited about this work? may turn out to be meaningful. But traumatic encephalopathy (CTE). We regardless of whether it’s directly know football players are at risk, but AT: You hit the nail on the head contributory to the disease itself or in addition to contact sports, some when you talked about funding. simply exacerbates the symptoms, members of the military, having been Given its prevalence, Alzheimer’s maintaining cardiovascular health is exposed to multiple blast exposures, disease has always been underfunded. one thing we should all be doing for may be predisposed to CTE. You could speculate all day, but our hearts and general well-being. I believe one of the big reasons is While many CTE symptoms are because people who have Alzheimer’s LEB: Isn’t that also the case for similar to Alzheimer’s disease, disease are often very frail and brain trauma caused by a fall or head it’s currently thought to be not in a position to advocate for injury? My doctor once told me that pathologically different. What is themselves like those with breast if I want to live longer, I should avoid happening in the brains of these cancer or HIV/AIDS. The inability falling down. For your generation, is people is being fiercely debated. It’s of our community to yell and march there a proven relationship between clear that some of them have a unique has handicapped our ability to raise head injury and contact sports like degenerative condition different awareness and cost us critical funding football and soccer? There is more from Alzheimer’s disease. However, support. awareness, but are people taking this many of these people may in fact seriously enough for themselves and also be predisposed to Alzheimer’s When scientists ask themselves, their families? disease and other neurodegenerative “What am I going to do with my diseases. In any case, it’s obviously life?” they have to weigh a passion for AT: We’ve known for quite some best to avoid brain trauma. a specific line of investigation with time that there is a relationship life decisions concerning themselves between repeated head trauma and LEB: It’s such a pleasure to hear and their families. They don’t want to end up unemployed because of vanishing research support. Researchers are already afraid they may not be employed in ten years, so when you discuss Alzheimer’s disease, and they see the funding isn’t really there, they say, “Well, if I’m going to go into research, I’m definitely going to take on something where I’m most likely to stay employed.” These are very smart, capable people making life decisions and they need to feel that Congress has their back. Nobody expects a blank check, but at the same time, if you work hard and you publish and you do well, funds should be there for you. Following the January 12, 2015 presentation “Alzheimer’s Disease: Current Challenges, Future Hope” (From Left: Chapter Executive VP, Jed Levine; presenter, Dr. Andrew F. Teich; LEB: Years ago, a group of scientists host, Ken Berger; Chapter President & CEO, Lou-Ellen Barkan; host and Board member, told us that we have enough Jeffrey N. Jones; and Board Co-Chair, Stephen P. Casper) 22 www.alz.org/nyc Research buildings and that philanthropic renewed, it’s a more significant data that life is not just about today. It’s an dollars are better spent in the lab. Is point than having somebody cheer ongoing cycle of growth; having a that true? Are all of our labs big and them on and say, “Don’t worry, it’s all family, paying rent, and doing work modern enough? going to work out.” they enjoy. Our job is to raise funds to make all of those things possible AT: It’s not spending money on The larger discussion should be how for you and your colleagues. new buildings that is the problem. NIH funding works. Since the NIH It’s that unless we have funding, began awarding research grants, it’s Andy, thank you so much for taking we’ll have facilities without research been a competitive process. The the time to talk with us today. It’s scientists to fill them. Buildings are major career grant is a five-year grant been both inspiring and informative, great if you have the people to work called the R01. At the end of five and we hope to be with you on in the labs. Columbia’s Zuckerman years, the NIH evaluates you and the day you announce a cure for Mind Brain Behavior Institute is a if you’ve made sufficient progress Alzheimer’s! terrific example because we have as judged by your peers, you are enough grant-funded neuroscientists renewed for another five years. This Dr. Teich graduated with a B.A. from to fill it. But there may be other system worked as long as funding was Cornell University in 1998, and then instances where donations are used to increasing or at least keeping par with pursued both an M.D. and a Ph.D. in support infrastructure that cannot be inflation. But when funding didn’t neuroscience at Columbia University supported by funded scientists in this keep par with inflation and we still College of Physicians and Surgeons. He age of austerity. kept churning people out of graduate continued at Columbia for a residency programs and bringing in post-docs in anatomic pathology and a fellowship As an aside, there was a huge ramp- from other countries, the whole in neuropathology. He was subsequently up in infrastructure spending at system came to a slow-motion crash. hired onto the faculty at Columbia where research institutions across the nation he is currently an Assistant Professor in the late 1990s and early 2000s, It would be great to wave a magic of Pathology and Cell Biology and an when the National Institutes of wand and say, “NIH funding will Attending Physician in the Division of Health (NIH) was at its peak budget. be restored to its 2003 level and Neuropathology. In his present position at The thought was build it and they we won’t have this problem again.” Columbia, Dr. Teich diagnoses diseases will come. Universities built huge Maybe we need a gatekeeper who related to the brain and spinal cord and research centers and once they had follows the scientists and keeps also runs a laboratory where he studies space, they hired scientists who wrote the process competitive, as well as Alzheimer’s disease, with an emphasis grants, and boom, they had their reassures scientists that, if you are on identifying new targets for therapeutic research center. But without funding, above board and doing good work, intervention. Dr. Teich has received several it doesn’t make sense. you will be funded. Reducing the honors for his ongoing work, including the uncertainty of funding would solve Gerstner Scholar Award from Columbia LEB: How can we influence the new the biggest problem. University, the Margaret M. Cahn generation of scientists to work on Research Award from the Alzheimer’s Alzheimer’s? LEB: When I first worked in politics, Association, and an R03 GEMSSTAR I was stunned by how much time award from the NIH-National Institute AT: I think young people who are people have to spend fundraising. on Aging. He also holds a New in graduate programs are extremely Sadly, it sounds like scientists have Investigator Research Grant from the observant. If, as they are making much of the same challenge and Alzheimer’s Association. decisions, they see mid-career it shapes the field they select. But faculty having trouble getting grants scientists, just like all of us, realize

Paid Advertisement www.alz.org/nyc 23 Support Groups Technology Can’t Replace Face-to-Face Support

Wendy Panken Face-to-face groups offer a sense of than on each other. She attributes Manager, Support Groups community that caregivers need. this to how long it takes to become [email protected] As Alzheimer’s progresses and the familiar with each other’s voices. person with the disease has more For this reason, during the first few difficulty with his or her memory, months she asked each member to he New York City Chapter’s finding words, conversing, and say his or her name before speaking. Support Group program relating, Alzheimer’s caregivers Over time, the group became close- Toffers Alzheimer’s caregivers report that their social lives slow knit as members increasingly relied over 120 support groups each month down. Friends and family visit less on each other for mutual support throughout the five boroughs. regularly and the loneliness and and guidance. The Chapter’s support groups have invisibility set in. Many caregivers traditionally been offered in both the also become homebound with their Initially, Ginny was hesitant about Chapter office and in community relative who has Alzheimer’s, and leading a telephone support group, settings. To make this possible, the leaving home and going to a group as she felt she had become dependent Chapter enters into partnerships enables them to have a few hours to on the visual and physical cues of an with community organizations who focus on their own needs. in-person group. “It took me a year co-host Alzheimer’s support groups to settle into this group, whereas throughout the metropolitan area. The importance of caregivers in a face-to-face group I become meeting directly with each other in acclimated within a couple of Whether they are spouses, partners, secure and consistent support groups months. In a sense I was learning to or adult children, Alzheimer’s cannot be overstated. The effect of be blind, because I had to find other caregivers generally prefer meeting actually seeing each other grapple cues to get to know people without face-to-face with others because with their feelings is an invaluable external factors such as their facial they look forward to the social healing experience. This experience expressions, clothing, or hairstyles. aspect of attending a support group. brings group members close to each I was shocked by a photo I received other in a way nothing else does. from a group member, since I had Caregivers go to support groups It alleviates the feeling caregivers pictured her entirely differently. But to share aspects of their caregiving have of being totally alone and after meeting for about five months, experience they feel they cannot invisible in their sadness and grief. I said to the group, ‘I feel I can see share with friends or family To quote a former group member, all of you,’ and a group member members. It is often reported that “Where else can I cry? Who else replied, ‘And we’re all beautiful!’” friends and family not involved in but my fellow group members can caregiving ask questions or offer possibly understand what I’m going Bottom line, Ginny has shown us suggestions that, unbeknownst to through?” Other group members that new kinds of groups can them, feel critical, judgmental, and have similarly credited their group provide comfort for caregivers. shaming. experience with changing their lives However, the value of caregivers for the better. seeing each other and being able to relate directly as mentioned In partnership with several previously cannot be overstated. community organizations, the It is widely acknowledged that the Chapter does offer telephone support experience of meeting in-person groups for Alzheimer’s caregivers with others greatly enhances the who, for one reason or another, capacity of group members to relate cannot leave home. These groups more openly and honestly in the obviously function somewhat end, and to cope better with their differently and produce somewhat responsibilities as caregivers. different results.

According to Ginny Abrams, a group leader who leads both kinds of Interested in joining a groups, her telephone support group support group? Visit is a bit more leader-centric and yields more consistent attendance, alznyc.org/supportgroups since it’s possible for group members or call our 24-hour to call in from wherever they are. In Helpline at 800-272-3900. Ginny Abrams leading a telephone a telephone group, Ginny says, the support group members tend to focus more on her 24 www.alz.org/nyc Education & Training Technology & Training

Nancy Lee Hendley Tic Tac® mints) alongside the client. The Chapter is committed to Dementia Care Trainer The aide “took” the Tic Tacs, and continuing to facilitate live, in- [email protected] the person with dementia took her person trainings because we believe actual medication. Creative solutions this is the most effective way to like this example are remarkable provide education to professionals s we know, there are a and noteworthy As trainees are so that they can provide enhanced multitude of online trainings able to see the significance of their care for persons with dementia. This and YouTube videos designed contributions, their confidence said, we acknowledge the benefits A and pride in their work increases. that technology can bring to the to educate professional caregivers about Alzheimer’s and dementia care. training room. The training team While there are some advantages to In-person training allows students at the Chapter has found Smart learning online, as a Dementia Care to process specific challenges Board technology to be extremely Trainer here at the Chapter for the related to their current assignments. useful as an enhancement to our past nine years, I would like to make a Trainees can strategize with one work. Smart Boards allow trainers case for several important advantages another and the group as a whole to add flexibility and personal focus of in-person experiential training. to discover innovative solutions to to their presentations. The Boards precise challenges that they face. serve as tools, allowing trainers to Professional caregivers greatly benefit from being in a setting with their peers. Many caregivers are isolated as “Learning should be refreshing and vitalizing. It becomes they work in people’s homes caring so only through stimulating exchange with peers with whom for one client with dementia. This one holds discussion. In this way learning becomes many leaves them to face the challenges and difficulties that often accompany sided and takes on a cheerful lightness. Whereas there the disease alone. It is well known is always something ponderous and one sided about the that dealing with people who have Alzheimer’s disease requires learning of the self-taught.” — The I Ching teamwork. Teamwork is often missing in the case of a professional caregiver. When professionals participate in Because the training is ongoing, readily refer to an image, concept, the Dementia Care Training for trainees try different approaches or exercise from a previous session. Professional Caregivers (DCTPC), and report their failures and their This allows the group to review they are given a forum to voice their successes. This allows for the constant ideas, build upon group participation, struggles and concerns — sometimes assessment and adjustment that is and refresh their minds of already for the first time. The supportive necessary in working with people presented important concepts. The environment created by the trainers who have Alzheimer’s disease. Smart Boards give easy access to and trainees allows for a free online resources and websites such exchange of ideas and the possibility The DCTPC provides multiple as ThisCaringHome.org, Music & to discuss the challenges and successes opportunities for hands-on exercises Memory, The Alzheimer’s Store, and of this most difficult work. One and activities. Some of these activities videos by Teepa Snow, Naomi Feil, graduate of the DCTPC remarked demonstrate to the trainees what it and many others. The trainers are that the group environment was might feel like to be a person with enthusiastic about the prospect of important to her because it provided dementia in certain situations. Our further enhancing trainings through “opportunities to express ourselves trainees learn by physically practicing the use of ever-advancing technology. — all of our opinions were valued.” the most effective ways to approach a person with dementia so as to An additional way that the Chapter Throughout the training, professionals have more successful encounters. has begun to utilize technology who have worked in this field for a We know that actual experiences, is through the development of substantial period of time, some as are in fact, known to be the best and Together We Care™. Our web- long as twenty years, are encouraged most beneficial practices in adult based resource matches families to share their knowledge and education. Research has shown that looking for home care professionals expertise. Their real-life experience when students interact with others with graduates of the DCTPC. is recognized and appreciated. Many through concrete experiences, of the tips and tools that they share the information is more likely to A healthy balance of in-person come directly from their experience. resonate. These types of exercises training and the use of technology As an example, one trainee solved enhance the likelihood of one being allows the Chapter to engage the the problem of her client not taking able to incorporate lessons learned “best of both worlds” to provide medication by joining her in taking in the classroom into their work. the highest level of education “medication” (in this case, it was and training in dementia care.

www.alz.org/nyc 25 Educated Consumer Is It Time to Buy Into Brain Training? What Every Consumer Should Know

By Cynthia R. Green, Ph.D. President, Memory Arts LLC Founder and Lead Trainer, Total Brain Health

rain training seems to be industry for overstating the benefits an assessment tool designed to track the latest fitness fad. From of software-based brain training.3 your cognitive performance over BTV commercials offering time. to make your brain “brighter” What do we know from the to “test your memory now” ads science? While this is a young field, Usability is Key. Another popping up on your Facebook feed, there is growing and significant critical factor to consider is the evidence of this growing obsession evidence that such products may appropriateness of the brain training with preserving our neurons benefit daily cognitive performance product for the person using it. abounds. Consumer indicators skills such as attention, speed of While some brain training products further support this trend. A 2014 processing, executive control and may be independently accessed AARP survey found that 93% of memory. However, it may be that during the early stages of a memory those asked feel that maintaining the benefit comes from performing disorder or used with assistance, in brain health is very or extremely intellectually demanding activities general, most of the brain fitness important.1 This is no secret to against the clock, which software currently on the market is the brain fitness industry, where characterizes most of these training designed for a younger, cognitively the digital space alone is expected products. This suggests then that well population and isn’t particularly to grow from an estimated $100 any time-challenge activity, even a user-friendly for someone facing million U.S. dollar market share in board game played with a timer or intellectual changes. Early research 2005 to an astounding $6 billion working on the crossword puzzle in brain training for memory U.S. dollar market share by 2020.2 against the clock may help us stay challenged adults is promising; sharper with practice. In addition, however, the findings to date are But does it really work? What there is little to no evidence that very limited and primarily come should the educated consumer know brain training products reduce our from intensive laboratory-based before buying into brain training? long-term risk for dementia. Best trials. In addition, individuals who And are there any benefits for those bets? Get in the habit of challenging were not computer literate prior to a who face memory challenges or your thinking with timed activities, diagnosis face the additional task of carry a diagnosis of dementia? What whether that brain training is learning how to use the technology, is worth taking a look at? Here is software-based or simply pulling which can prove quite difficult. some advice to guide you as you out your old Boggle set and playing consider whether to invest your against the timer. If you would like to try brain time and money in brain training training software for someone products. If you want to check out brain with memory challenges, touchpad training software, most companies technology using app-based training Look to the Science. One of offer a limited version or trial products offers perhaps the best the most significant issues with the subscription for free. Look to option, as the interface is more current brain training offers is the web- or app-based products, which intuitive and accessible. This is actual data behind the claims that tend to be less expensive and are particularly true for individuals with they make. Some companies have easily cancelled. Elevate (www. mild changes, or for those who asserted benefits that go well beyond elevateapp.com), an app-based brain were previously familiar with such what the science demonstrates, training program which focuses on technology. In addition, some of for example, suggesting that using “real world” training, was recently the available apps focus on their programs can make your brain named 2014 App of the Year by multisensory engagement, such as “20 years younger” or significantly Apple. Peak (www.peak.net) is music, which provides alternative reduce dementia risk. These another brain training app that methods for cognitive stimulation. misleading claims recently brought made Apple’s list. Lumosity (www. In addition, technological solutions together an international group of lumosity.com) remains perhaps that support independent function, leading brain science scientists, who the most popular and successful of such as medication reminders, published a consensus statement the software-based products, and timers, location reminders and the under the auspices of the Stanford is very user friendly and has a new like, while not necessarily “brain Center for Longevity and the option to assess your skills. You training,” can be a great tool for Max Planck Institute for Human may also want to consider Brain mild-to-moderately challenged Development criticizing the Baseline (www.brainbaseline.com), individuals. The Alzheimer’s

26 www.alz.org/nyc Educated Consumer

Society in the UK (www.alzheimers. maintain our everyday cognition and 1 AARP. Brain Health Research org.uk) offers a very useful review lower dementia risk. Good physical Survey. Accessed 2/20/2015. www. of assistive technology for use in health habits including regular aarp.org/content/dam/aarp/research/ dementia.4 exercise and maintaining a healthy surveys_statistics/health/2015/2014- weight, participating in intellectually Brain-Health-Research-Study- Despite the scientific and usability challenging activities, taking care of AARP-res-gen.pdf limitations of brain training our emotional well-being, and staying 2 software for memory-challenged socially active have all been linked to Sharp Brains. Executive Summary: adults, many consumers still wish better brain health over our lifetimes. Infographic on the Digital Brain to try the products, as there is a While we may take this “healthy Health Market, 2012-2020. Accessed sense that they “do no harm.” It is lifestyle” advice a bit for granted, 2/21/2015. www.sharpbrains.com/ important, however, to ensure that the science behind it is strong and executive-summary/ the experience is worthwhile to the growing. A recent finding presented 3 Stanford Center on Longevity. A user and does not become simply at the Alzheimer’s Association ® Consensus Statement on the Brain a demoralizing and frustrating International Conference found that Training Industry from the Scientific exercise (which is in fact harmful in a multi-modal intervention including Community. Accessed 2/20/2015. its own way). Dakim BrainFitness exercise, cognitive engagement, www.longevity3.stanford.edu/ Silver (www.dakim.com) is a brain and lifestyle changes significantly blog/2014/10/15/the-consensus-on- training product offered through improved cognitive performance in the-brain-training-industry-from- senior living facilities that has a a group of adults at-risk for memory the-scientific-community/ touchscreen application, although disorders.5 This large-scale study it is not specifically designed for is ongoing, but shows that while 4 Alzheimer’s Society. Assistive clients with memory disorder. brain training may capture our technology – Devices to help SingFit (www.singfit.com) is a imagination, in fact it is how we live with everyday living. Accessed wonderful app designed by a music day-to-day that might matter most. 2/20/2015. www.alzheimers.org. therapist that uses music for cognitive uk/site/scripts/documents_info. stimulation and engagement. Cynthia R. Green, Ph.D. is a clinical php?documentID=109 Memory Apps for Dementia (www. psychologist and leading expert on brain 5 memoryappsfordementia.org.uk) health. Known for her ability to provide AAIC Press Release. Two-Year offers regular updates of training and scientifically solid, practical information on Clinical Trial of Multifaceted other touchscreen applications. cognitive wellness, Dr. Green is a sought- Lifestyle-Based Intervention Provides after speaker and author whose latest Cognitive Benefits for Older Adults Balance is Key. Finally, it is critical collaboration with National Geographic, at Risk of Dementia. Accessed 2/20/2015. www.alz.org/aaic/ to keep in mind that despite the Your Best Brain Ever, was named a releases_2014/mon-730pm-finger.asp hype, brain training is only one of “2013 Top Guide to Life after 50” by the many ways we must engage to The Wall Street Journal.

www.alz.org/nyc 27 Public Policy 2015 Ushers in Alzheimer’s Advocacy Success

Hillary Stuchin who has Alzheimer’s Director of Public Policy disease and a pillar of the [email protected] medical community. In his address, Dr. Satcher inspired Forum attendees o far, 2015 has been an incredible in a call to action, saying year for Alzheimer’s advocacy “Let’s get it together; Sefforts. From Capitol Hill to let’s band together; let’s Albany and City Hall, Alzheimer’s educate and motivate. disease is being recognized as a major Let’s get the right public issue and health crisis that policies in place to deal can no longer be ignored, thanks with this problem.” to the commitment and enthusiasm of advocates and supporters. Echoing Dr. Satcher’s call for increased funding On February 24, the New York State for Alzheimer’s research New York State Advocates hold annual Rally Day in Albany Coalition of Alzheimer’s Association and enhanced care Credit: NYS Coalition of Alzheimer’s Association Chapters Chapters, of which the New York services, the Alzheimer’s City Chapter is a member, held Association’s 2015 Federal its annual Rally and Legislative Priorities include the Visit Day. Nearly 200 Alzheimer’s passing and enactment of Association advocates, Ambassadors, the HOPE for Alzheimer’s and Chapter staff from across New Act (S.857, H.R. 1559) York State traveled to Albany to urge and $300 million in elected officials to support increased additional funding for funding for Alzheimer’s care and Alzheimer’s research at support services statewide. These the National Institutes efforts paid off. On April 1, New of Health (NIH). Both York State took a major step forward items are consistent in its support with the inclusion with recommendations of $50 million for care, support, laid out in the National and respite services statewide. This Alzheimer’s Plan. funding — the largest one-time New York State Advocates meet with Senator Chuck Schumer increase by any state — is committed New York City Chapter Credit: NYC Chapter to serving all New Yorkers living Ambassadors, advocates, Junior with or caring for a person with Committee members, and impact on our lawmakers, at any level Alzheimer’s or related dementias. This staff then stormed Capitol Hill of government, without the efforts support helps address the dire need to meet with our Congressional of our advocates and supporters. for services, which until now had representatives. In each meeting, been funded at just over $1 million Congress Members and their staff We have seen amazing success in statewide. met our requests with great support recent years. Since 2012, Congress and encouragement. Advocates and the President have increased the To further inspire support, this time shared their personal accounts of budget for Alzheimer’s research at on the national stage, more than 1,000 caring for family members with the NIH from just over $400 million Alzheimer’s advocates and Alzheimer’s Alzheimer’s disease and the impact to nearly $600 million. While this Association Champions travelled to the NYC Chapter has had on their incremental funding is not as high as Washington, D.C. in late March for lives as caregivers. A highlight of our we need it to be, it does show that our the annual Alzheimer’s Association Capitol Hill visit was meeting Senator lawmakers are listening and starting Advocacy Forum. The Forum, a Chuck Schumer, who personally to understand the monumental impact three-day event, features influential pledged his continued support. of Alzheimer’s disease. They know speakers who are committed to that if they do not support efforts to enhanced care services and increased The achievements of Alzheimer’s find a means of prevention, treatment research funding to find a means advocates and supporters cannot or cure, our national spending on of preventing, treating, or curing be overstated. While the New the disease — currently $226 billion Alzheimer’s. This year’s keynote York City Chapter is committed to annually — will skyrocket to $1.1 speaker Dr. David Satcher, the 16th enhancing care and support services trillion annually by 2050. Even in a Surgeon General of the United States, in addition to increasing research divisive climate, Congress can come is thoroughly committed to our cause funding for Alzheimer’s disease, together on issues that impact us all. as the primary caregiver for his wife we could not continue to make an 28 www.alz.org/nyc N.Y.C.A.R.E.

Technology and Advances in Alzheimer’s Research s the number of people affected by Alzheimer’s disease increases, due to the aging population, the need for A better therapies has become increasingly urgent. Technological advances are also increasing, so it is natural to ask: how can these advances accelerate the development of Alzheimer’s research? Indeed, researchers are harnessing new technologies to improve research methods in several ways. These techniques may provide less invasive diagnosis, in addition to better markers of progression, allowing determination of the effects of experimental therapies to be seen earlier and requiring fewer research subjects. Several such advances are discussed here.

New York State Advocates hold annual Rally Day in Albany New image analysis methods using Magnetic Resonance Credit: NYS Coalition of Alzheimer’s Association Chapters Imaging (MRI) can provide measures of brain shrinkage globally and in different regions of the brain. Computer programs can allow serial analyses providing a measure of brain changes over time in research studies. New MRI techniques such as Magnetic Resonance Spectroscopy may allow determination of changes in brain chemicals in research studies. Imaging technologies using Positron Emission Tomography (PET) are providing better diagnostic tools. Modern “molecular imaging” using radiopharmaceuticals that bind to beta-amyloid protein or tau protein, are able to visualize, using PET, deposits of these abnormal brain proteins in the brains of living individuals. Now available both commercially and for research are three different PET amyloid-imaging Paid Advertisement agents (florbetapir, florbetaben, and flutemetamol), and additional amyloid-imaging agents are under testing — as well New York State Advocates meet with Senator Chuck Schumer as agents that are believed to image abnormal tau deposits. Tackling Alzheimer’s Through Technology Credit: NYC Chapter These techniques potentially can substitute for more invasive procedures such as brain biopsy. Accuracy of diagnosis is much improved by having information as to whether Alzheimer’s pathology is or is not present in a person affected with cognitive impairment. In addition to providing better diagnostic information, following PET molecular images may provide information as to progression or regression of Alzheimer’s changes in the brains of research participants. Balance is an essential tool for caregivers of Alzheimer’s Biochemical techniques now allow for exquisitely sensitive patients as it enables you analysis of proteins in blood or cerebrospinal fluid. Using these to coordinate care among measures provides greater diagnostic certainty, much like multiple caregivers in molecular imaging. These measures also have the potential to real-time. Track physical, allow for “molecular markers” of progression of the disease. behavioral and emotional These markers allow researchers to determine small changes in changes and share them with brain biochemistry that may not be evident on questionnaires other caregivers and doctors or pen and paper testing. These biochemical tests hold the instantaneously. Coordinate promise of allowing research answers to be obtained in studies care and medications, learn of shorter duration and few participants, accelerating the pace of about the latest Alzheimer’s research. research and information, and much more.

Technological advances in the laboratory may also provide BY THE NATIONAL ALZHEIMER’S CENTER additional treatment possibilities. It is now possible to isolate For caregivers of Alzheimer’s patients from blood or a small skin biopsy “stem cells” that can balanceapp.org differentiate into nerve cells in a dish. These cells hold the promise of possibly allowing replacement of cells lost to degeneration. Paid Advertisement CREATED BY THE HEBREW HOME AT RIVERDALE www.alz.org/nyc 29 Spring/Summer 2015 Calendar

Understanding Dementia Seminar: Please call our What You Need to Know and Where to Go 24-hour Helpline at Sessions provide family members and friends 800-272-3900 with information about Alzheimer’s, other types of dementia and resources, and services available. to register for meetings. Registration is required. Upcoming Dates in English: Space is limited. May 20 5:30 – 7:30 p.m. Manhattan May 20 6:00 – 8:00 p.m. Brooklyn May 27 6:00 – 8:00 p.m. Upper Manhattan Placing Your Relative in a June 4 12:30 – 2:30 p.m. Queens Nursing Home June 9 5:30 – 7:30 p.m. Manhattan June 12 Noon – 2:00 p.m. Manhattan Sessions educate caregivers about the June 17 1:00 – 3:00 p.m. Brooklyn steps involved in nursing placement, paying June 17 5:30 – 7:30 p.m. Manhattan for care, easing the transition, and being a successful advocate for the resident. July 2 12:30 – 2:30 p.m. Queens July 10 Noon – 2:00 p.m. Manhattan Upcoming Dates: July 14 5:30 – 7:30 p.m. Manhattan June 16 5:30 – 7:00 p.m. Manhattan July 15 5:30 – 7:30 p.m. Manhattan July 21 5:30 – 7:00 p.m. Manhattan July 15 6:00 – 8:00 p.m. Brooklyn August 18 5:30 – 7:00 p.m. Manhattan

August 6 12:30 – 2:30 p.m. Queens August 11 5:30 – 7:30 p.m. Manhattan Legal & Financial Seminar August 14 Noon – 2:00 p.m. Manhattan An attorney specializing in Elder Law discusses important topics caregivers Upcoming Dates Just for Professionals: should understand before meeting with June 3 3:00 – 5:00 p.m. Manhattan a personal attorney. Topics include Power of attorney, Guardianship, Medicaid Upcoming Dates in Spanish: Eligibility, Long-Term Care Insurance, August 12 6:00 – 8:00 p.m. Upper Manhattan Health Care Proxy, and more.

It is recommended that you attend an “Understanding Medicaid Home Care Seminar: A Dementia: What You Need to Know and Where to Go,” seminar prior to attending this meeting. Practical Guide to the System Upcoming Dates in English: Caregivers are guided through the application May 18 5:30 – 7:00 p.m. Manhattan process for Medicaid home care service. May 28 5:30 – 7:00 p.m. Manhattan

Prior attendance at a Legal & Financial Seminar is June 1 Noon – 1:30 p.m. Manhattan required. June 15 5:30 – 7:00 p.m. Manhattan June 25 5:30 – 7:00 p.m. Manhattan Upcoming Dates: June 4 5:30 – 7:00 p.m. Manhattan July 6 Noon – 1:30 p.m. Manhattan July 9 5:30 – 7:00 p.m. Manhattan July 20 5:30 – 7:00 p.m. Manhattan August 6 5:30 – 7:00 p.m. Manhattan July 23 5:30 – 7:00 p.m. Manhattan August 3 Noon – 1:30 p.m. Manhattan 30 www.alz.org/nyc Spring/Summer 2015 Calendar

All meetings are free of charge and Family Caregiver Workshops subject to change. You may notice that specific locations of upcoming meetings During this 10-hour workshop, caregivers are not listed. You will receive location information during your learn to view the world from the registration call. perspective of the person with dementia. We wish to thank the following community partners: They also learn how to communicate more CAPE at the Samuel Field YM-YWHA effectively with the person for whom they Riverstone Senior Life Services are caring and receive new insights on Heights & Hills how to manage the challenging behaviors Presbyterian Senior Services often associated with Alzheimer’s disease, as well as the importance of self-care.

Monthly Educational Meetings Upcoming Series Dates: Upcoming Dates (all meetings from 6:00 – 8:00 p.m.): June 2, 9, 16, 23 – Manhattan Noon - 2:30 p.m. June 15 The Moral Challenges of Alzheimer’s Disease: Ethical July 7, 14, 21, 28 – Manhattan Issues from Diagnosis to Dying Noon - 2:30 p.m. (Spouses only) • What are the ethical issues faced by family members of persons with dementia? July 8, 15, 22 & 29 – Manhattan • How can we address these issues? 5:30 p.m. – 8:00 p.m. Speaker: Stephen G. Post August 5, 12, 19, 26 – Manhattan July 13 Noon - 2:30 p.m. Using Personalized Music to Improve Quality of Life • Why personalized music? What is the science and August 6, 13, 20, 27 – Manhattan benefits behind it? 5:30 p.m. – 8:00 p.m. • How to create a personalized playlist and gain support of a nursing home or assisted living facility. Upcoming Series Dates in Spanish: Speaker: Dan Cohen May 22, 29 & June 5,12 – Brooklyn August 10 1:00 p.m. – 3:30 p.m. Family Conflicts in Caregiving An Alzheimer’s Event Like No Other! • Recognizing different styles of communication AttendanceThe G isl orequiredbal F ata mall iworkshopsly Reun ini oa nseries. • Understanding the role of mediation services and A day-long festival devoted to families and Alzheimer’s setting appropriate boundaries June 6, 2015 Speaker: Ana Araujo at The New York Hall of Science 47-01 111th Street, Queens, NY Activities! Music! Celebrities! Fun! to raise money for the Alzheimer’s Association NYC Chapter

Presentations by Henry Louis Gates Jr., Dr. Oz , and more RSVP online for Monthly Educational Meetings at Comedy by Nick Kroll and Michael Ian Black Music including Sister Sledge performing www.alznyc.org/educationreg “We Are Family” live Plus Games, Contests, Food, & World Record Attempts

Sign up and/or Volunteer at GlobalFamilyReunion.com Upcoming Events We Sing & Dance An Alzheimer’s Event Like No Other! May Join us for an afternoon of singing and dancing with staff The Global Family Reunion 18 members from Rhythm Break Cares and the Alzheimer’s Association, New York City Chapter! Refreshments will be A day-long festival devoted to families and Alzheimer’s served. Please call our 24-hour Helpline at 800.272.3900 to June 6, 2015 register. at The New York Hall of Science June Mind & Body 47-01 111th Street, Queens, NY 2&11 “Mind and Body for Caregivers” incorporates gentle chair-yoga, as well as breathing and relaxation techniques for caregivers. Purchase tickets at Please call our 24-hour Helpline at 800.272.3900 to register. www.alznyc.org/globalfamilyreunion www.alz.org/nyc 31 NON-PROFIT ORG. U.S. POSTAGE PAID 360 Lexington Avenue, 4th Floor St. Joseph, MI New York, NY 10017 PERMIT No. 244 CHANGE SERVICE REQUESTED www.alz.org/nyc 646 744 2900 800 272 3900 — 24-hour Helpline