LIAFLine Winter 2007
19th Annual LIAF “Coping & Caring” Conference
NEWSLETTER OF THE LONG ISLAND ALZHEIMER’S FOUNDATION
INSIDE THIS ISSUE...
Atypical Antipsychotics and Alzheimer’s Disease by Dr. Blaine S. Greenwald and Leslie Gonzalez
• Antipsychotics and AD • Sixth Annual Candlelighting • Rice Sisters Discuss Caregiving • 19th Annual Remembrance Ball • New Chairman for LIAF • Coping & Caring Conferences • Outstanding Service Awards • Caregiver Intervention Study Findings • Dr. Norman Relkin Presents at LIAF • Featured Workshops
recent study supported by The National Institute of Mental Health (NIMH) reports that Risperdal, Seroquel and Zyprexa, so-called “atypical” or “second-generation” antipsychotic drugs often prescribed to Alzheimer's disease (AD) clients, offer only modest benefit. These drugs are called atypical or second-generation to distinguish them from older or so-called ‘conventional’ antipsychotic agents like haloperidol (Haldol) and chlorpromazine (Thorazine) which have a different chemical structure and somewhat different mechanism of action. The finding adds to a nationwide controversy over the use of antipsychotics to treat AD clients, following a 2005 mandate by the U.S. Food and Drug Administration (FDA) that manufacturers post special warnings citing risk of increased mortality or serious side effects. Results of the $17 million study led by AD experts Dr. Lon S. Schneider of the University of Southern California and Dr. Constantine Lyketsos of Johns Hopkins were published in the New
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England Journal of Medicine. The “Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) Alzheimer’s Disease” study tested second generation antipsychotics risperidone (Risperdal), quetiapine (Seroquel), and olanzapine (Zyprexa) against a placebo in 421 AD clients at 45 sites from 2001 through 2005. Although these drugs showed some benefit for some patients, the researchers concluded that adverse effects, such as uncontrolled muscle movements, excessive sedation, worsened mental functioning and confusion, offset the advantages in the study group. Widely prescribed at an annual cost of about $10 billion, the question is whether these newer, popular antipsychotics are worth their higher cost. An estimated 5.5 million Americans suffer from AD, which is regularly associated with changes in personality and behavior. Delusions (false fixed beliefs), hallucinations (perceptions without a stimulus) and aggressive behaviors can be extremely taxing on both clients and caregivers. Such behavioral disturbances are often the key
factor in a family’s decision to place a loved one in residential care. Antipsychotic drugs are widely used with AD and related dementia patients, particularly in nursing homes, to help control serious aggressive behaviors and psychiatric symptoms. This is called “off-label” use of these medications, since none of these drugs are currently FDA-approved for elderly clients with dementia. Janssen Pharmaceutica makes Risperdal; AstraZeneca makes Seroquel; and Eli Lilly and Co. makes Zyprexa. Although the manufacturers say they do not recommend their products for AD, more than a quarter of all AD clients in nursing homes are prescribed these drugs, which were initially developed for schizophrenia. Doctors who prescribe them to their dementia clients are thus relying on their clinical judgment. On the basis of the reports indicating increased mortality associated with second generation antipsychotics, in April 2005, the FDA ordered “black box” warnings citing potential for Continued on page 10
LIAFLine
Executive Director’s View Hello Friends! Happy 2007! We have new leadership at our Board of Trustees. Thomas J. Killeen, Esq., Vice Chairman of the Board, and longtime LIAF Board and Executive Committee Member becomes Chairman, as our friend Syd Jacoff steps down. We thank Syd, now Lifetime Trustee, for his leadership, commitment and long service. We are grateful that he will stay on as a Board and Executive Committee member. Tom Killeen brings his vast experience and great community service record to LIAF. We are delighted that our Founder and Chairman Emeritus Janet B. Walsh has agreed to be Vice Chairman. Janet has always led us forward. Now we are pleased she has taken on a Board Officer role again. 2006 began with a Strategic Plan for LIAF, which we will build on in 2007 – focusing on fundraising to sustain our programs; new technology; enhancing our Advisory Board and community partnerships; and branding in the marketplace. 2007 will feature more professional trainings in Queens with the Spanish Speaking Elderly Council/RAICES, and building on our ongoing client and caregiver support programs, in-home respite and adult day programs. We are most appreciative for our public and private sector funding, and donations from generous individuals, making it possible for LIAF to help our Alzheimer’s community. All the best for a terrific year ahead!
Founder’s Corner Dear Friends, Another year has passed and still we wait for some earth shaking news in the field of Alzheimer’s. I am an optimist so let’s wish for the big news to come this year. In the meantime, LIAF continues to provide the most up-to-date resources and guidance to help navigate the long and difficult journey families must face with Alzheimer’s and related memory disorders. Do not go it alone; join the thousands of families who find answers, comfort and new friends through LIAF. I am grateful to all who helped make this year’s Remembrance Ball a great success. Our Honorees were well-deserving and we celebrated the night in true congratulatory fashion. In 2007, we have the good fortune of honoring one of our Trustees, Peter Scotese; please read about this great man in this newsletter. Looking further into our future we are delighted to be honoring Edward Traviglanti of Commerce Bank in 2008. These wonderful people are truly our heroes. I cannot believe LIAF will begin its 20th year of service to the Long Island Community. Just as if it was yesterday, I remember our launch on January 13, 1988 at my home. Twenty people had RSVP’d for this event and over 50 showed up. There I was in the kitchen making tuna fish sandwiches and recognizing with awe how many people were enthusiastic about the trail we would be blazing. I remain grateful to my fellow Founders: Susan Raven, Brenda Crom-Johnson, Phyllis Corio and Felicia Pasculli-Udell. The Long Island Alzheimer’s Foundation remains a wonderful part of my life and the people I have met along the way have my deep gratitude for sharing and teaching me so much. My best,
Please designate LIAF as your United Way charity.
LIAFLine The Long Island Alzheimer’s Foundation, Inc. Leslie Gonzalez, Editor 5 Channel Drive, Port Washington, NY 11050 (516) 767-6856 Fax: (516) 767-6864 e-mail: info@liaf.org Internet: www.liaf.org
LIAFLine is the newsletter of the Long Island Alzheimer’s Foundation, Inc. (LIAF). It is supported entirely by contributions and is intended for caregivers, service providers and anyone interested in Alzheimer’s Disease or the Foundation. Articles, news items, correspondence, or other materials of interest are welcomed for publication consideration.
® 2007 The Long Island Alzheimer's Foundation, Inc Material in LIAFLine may be reproduced, with proper reference to source. Any statements of fact and opinion are the responsibility of the authors herein and do not imply an opinion or endorsement on the part of The Long Island Alzheimer's Foundation, Inc.
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LIAFLine
Caregivers
Commemorative Candle Lighting T he Long Island Alzheimer’s Foundation 6th Annual Commemorative Candle Lighting Ceremony was held November 8, in conjunction with National Alzheimer’s Disease Awareness Month. Over 75 people lit a flame of hope for the thousands presently coping with Alzheimer’s disease, and remembered loved ones lost to it. The evening included music, refreshments, and words from Patricia M. Gallatin, LIAF Executive Director; Thomas P. DiNapoli, 16th District Assemblyman; Winsome Bent, Executive Director of The Bristal at North Hills; and reflections by Kathleen Rice, Nassau County District Attorney. Names were recited by Jackie Burris, John Carroll, Bob Gass, Karen Henley, Terri Kamin, Angie Lombardi and Kathleen Rice. Special thanks to The Bristal Communities, site sponsor; Chapin Home Adult Day Health Care Center, community sponsor; Robert Zahn, keyboardist; and vocalists Rachel Gulzband, Maggie Moore and Jackie Weissman of Herricks High School Choir. ❍
Rice Sisters Share Caregiving Strategies S isters Christine M. Rice and Kathleen M. Rice would like to share their personal caregiving story with the LIAF community. Their mother, Christine C. Rice, was diagnosed with Alzheimer’s disease in 1996, and passed away to the disease in March 2006. Their mother’s caregiving experience, headed by daughter Christine, encompassed 10 years. Kathleen Rice, who is District Attorney for Nassau County, NY, spoke eloquently to caregivers at LIAF's Commemorative Candlelighting Ceremony on November 8. She tearfully recalled her mother's personal struggle with AD. Both sisters credit their
mother’s longevity to the warm, caring environment the family provided, and recommend physical activity for those diagnosed. “Keeping them moving, that was as a lifesaving thing for my mother. It keeps the vitality going. It keeps them alive, even in anxiety stages,” Christine said. She recalled when her mother would insist on going to a place of past memory. She would put her mother at ease by taking her for a car ride until her mother’s medication took effect and the anxiety period passed. Both sisters praised the work of Dr. Gisele Wolf-Klein, formerly of Parker Jewish Institute for
Kathleen Rice spoke of her mother at LIAF Candlelighting. Continued on page 6 Winter 2007
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LIAFLine
Events
19th Annual Remembrance Ball his year the Long Island Alzheimer’s Foundation honored six outstanding individuals and one corporation for the generosity and support they have provided throughout the years. We thank you, Blaine S. Greenwald, MD; Arnold P. Levy, MD; David R. Okrent, Esq.; Virginia Belling, RN, MS; Phyllis Ettinger, MA, MED; Madelyn Dubiner, Chair, Caregivers Council; and Verizon Communications, Inc. for your tireless dedication. LIAF is privileged to have such a distinguished group of men, women and a corporation committed to the LIAF community. The 19th Annual Remembrance Ball was held on Friday, November 3, 2006 at the elegant Garden City Hotel. The Ball is LIAF’s biggest fundraiser of the year. This year's gala was a great success with proceeds from 275 attendees and a first time silent auction that raised $331,000. “LIAF Angels” was this year’s theme, and honored were individuals who have selflessly given of themselves to support LIAF’s programs and services. ❍
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Guests browse the new silent auction.
Madelyn Dubiner, LIAF founder Janet Walsh and Bonnie Duran, Daniel Gale Sotheby's International Realty.
Senator Michael Balboni; Virginia Belling; Phyllis Ettinger; Dr. Blaine Greenwald; Ralph Caruso of Nassau County's Department of Senior Citizen Affairs; and Assemblyman Thomas DiNapoli.
Senator Michael Balboni; David Okrent, Esq.; Susan Hayes of Verizon; Dr. Arnold P. Levy; Madelyn Dubiner; Ralph Caruso of Nassau County's Department of Senior Citizen Affairs; and Assemblyman Thomas DiNapoli.
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Honors
New Chair of LIAF Board of Trustees ffective Thursday, November 16, 2006, Thomas J. Killeen, Esq., of Farrell Fritz, P.C., was elected LIAF’s new Chairman of the Board. Mr. Killeen succeeds Sydney Jacoff, President of Great Neck Saw Manufacturers, Inc., who was named Lifetime Trustee. A graduate of St. Francis College and St. John’s University School of Law, Mr. Killeen served as Managing Editor of St. John’s Law Review, and as guest lecturer for the University’s Continuing Legal Education Program. He is a member of the New York State, Nassau County and American Bar Associations. Mr. Killeen is affiliated with the Manhasset Board of Education and the Executive Advisory Board of Long Island University/C.W. Post Center for Family Business. He is the founding member and Director of the Long Island Community Chest, Inc., and a member of the Catholic Volunteer Lawyers Initiative for the
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Diocese of Rockville Centre-based Catholic Charities. Mr. Killeen has served on the LIAF Board of Trustees since 1998. He is a member of LIAF's Executive Committee and is Chairman of the LIAF Strategic Planning Committee. ❍
he Long Island Alzheimer’s Foundation will honor Peter G. Scotese at the 20th Annual Remembrance Ball to be held Friday, November 2 at the Garden City Hotel. Mr. Scotese, recognized for his outstanding support of LIAF’s community programs and services, is the retired CEO of Springs Industries, Inc. and has been a LIAF Trustee since 2003. A native of Philadelphia, Peter Scotese studied accounting and business at the Wharton School of the University of Pennsylvania. He
The Long Island Alzheimer's Foundation is seeking advertisers for its LIAFline newsletter, which is distributed to 21,000 families, 10,500 organizations and over 300 medical centers three times a year. In addition, LIAFline is a resource at over 200 public libraries in Nassau, Suffolk, Brooklyn and Queens; and made available at all LIAF events, workshops and conferences. Ad space includes a free web link at www.liaf.org. For more information, call Leslie Gonzalez at 516-767-6856.
Gifts available!
Tom Killeen, LIAF Chairman of the Board, shares a handshake with Syd Jacoff, Lifetime Trustee.
20th Annual Remembrance Ball to Honor Peter G. Scotese
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Advertisers Wanted
served in World War II, and was awarded the Bronze Star and two Purple Hearts. He began a career in textiles beginning in Indian Head Mills of New York, and later joined Springs Industries, Inc. in 1969. During his 12-year tenure at the company, sales tripled and earnings more than quadrupled, earning him the title “Textile Man of the Year” by the New York Board of Trade in 1983. He remains active in a wide range of civic, community, and business activities. ❍
Valentine's Day St. Patrick's Day Easter Basket Plush items Caregivers' Wall Art Framed Works Books, Pins, Media Call 516-767-6856
LIAF Legal Briefs The Latest in Medicare, Medicaid & Elder Law from the Long Island Alzheimer’s Foundation Legal Advisory Board Issues are $20 by Mail $15 at LIAF Reserve your copy today! Call 516-767-6856 Winter 2007
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LIAFLine
Caregivers
Workshop Addresses Caregiver Concerns he Long Island Alzheimer’s Foundation “Coping & Caring” Workshop was held September 21 at the Hauppauge Corporate Center. The newly structured workshop featured two separate panels of physicians, elder law and caregiver experts, who addressed questions from both professional and private caregivers. The morning panel, moderated by Janine Regosin, LMSW, consisted of Elizabeth Geary, M.Ed., LMSW; Dr. Max Rudansky and David Okrent, Esq., CPA. The afternoon panel, moderated by Rita Porwick, MPS, consisted of Dr. Suzanne Fields; Darlene Jyringi, MPS; and Felicia Pasculli, Esq. Steve Englebright, 4th District Assemblyman and Chair of the Committee on Aging, was keynote speaker. About 90 people including 24 exhibitors participated in this workshop, sponsored by Reckson Associates, Novartis, and the Long Island Geriatric Education Center. ❍
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Rice
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Health Care and Rehabilitation, for her sensitivity and dedication to clients, and caretaker Mike Jennings of Parker’s Hospice Program for his outstanding service. Kathleen stressed the need for increased respect for hospice. ‘“We need to establish more longstanding hospice programs, specific to the Alzheimer’s community,” she said. Christine greatly recommended the book, “The 36Hour Day,” for its ability to teach coping mechanisms and caregiver strategies, such as admitting responsibility for “lost” or “stolen” items, such as jewelry, perceived 6
Winter 2007
Reckson Associates sponsored the new location for LIAF's Workshop.
Elizabeth Geary, M.Ed., LMSW; Dr. Max Rudansky and David Okrent, Esq., CPA, address caregiver concerns during the Workshop's morning panel. to be missing. This eased her mother’s tension. “It gave her reassurance,” she said. “She kept her pride.” A key point, Christine added, is to recognize that agitation and harsh words are “the disease” talking, not your loved one. This enabled her to react positively to negative behaviors and not take things personally. Both sisters described support groups as an “absolutely necessary” resource for families coping with Alzheimer’s disease. “The challenge is to strengthen the support of the caregivers,” Kathleen said. A diagnosis within the family can be a devastating blow for adult sons and daughters to accept. An
accountable, supportive environment is ideal, but this is not always the case in every family. The Rice family of ten children, four sons and 6 daughters embraced their mother’s care. Working together, they credit the family bond for taking extra steps to maintain her mother’s wardrobe, personal care, and dignity. “No matter what the relationship is between parents and children. They are still your parents,” Christine said. Kathleen added, “If there’s kids involved, it’s such a positive… to not have children be afraid of it. It teaches them compassion, love and loyalty.” ❍
Events
LIAFLine
Back by Popular Demand
Caregiver Training with Teepa Snow or those who missed out last time, here is your chance to catch LIAF’s next series of professional trainings with Teepa Snow on Monday, March 19 and Tuesday, March 20, 2007. Ms. Snow is the Education Director at the Alzheimer’s Association Eastern North Carolina Chapter, and an expert on how to manage difficult behaviors. Rave reviews describe Ms. Snow’s advanced skill building workshops as engaging and interactive, with hands on demonstrations and audience participation. For all who have requested trainings for caregivers, please register early for these full day workshops. Continued Education Credits (CEUs) will be available for social workers and recreational therapists. To register, please call Stephanie DePalma at 516-767-6856. ❍
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Service Awards
Teepa Snow trains caregivers at LIAF on August 3, 2006.
THIRTEENTH ANNUAL
Outstanding Service Awards Luncheon
Tuesday, April 17, 2007 • 11:30 AM - 2:30 PM The Garden City Hotel, Garden City A salute to those who go above and beyond the call of duty, friendship and responsibility to the Alzheimer’s disease community. Luncheon Honorees to Be Selected in Early February 2007 Join the Long Island Alzheimer’s Foundation to Celebrate the Outstanding Service Award Honorees. TICKET RESERVATIONS ■ Please reserve _____ tickets @ $70 per person (50% tax deductible) ■ Please reserve _____ tables @ $700 per table (50% tax deductible) ■ My company has a matching gift program, please add $_____ from _____________. ■ I cannot attend, but please accept my donation of $_____ to continue LIAF’s mission. Total Amount Enclosed: $________. ■ Check
■ Visa
■ MC ■ AMEX ■ DIS
Card#___________________________Exp._____ Name on Card_____________________________
JOURNAL AD Gold page (7- 1/2 w X 10 h) . . . . . . . . . . . . . .$1,000 Silver page (7- 1/2 w X 10 h) . . . . . . . . . . . . . . .$750 Full Page (7- 1/2 w X 10 h) . . . . . . . . . . . . . . . . .$350 Half Page (7-1/2 w X 5 h) . . . . . . . . . . . . . . . . . .$200 Quarter Page (3-3/4 w X 5 h) . . . . . . . . . . . . . . . .$125 Supporter (2 lines recognition) . . . . . . . . . . . . . . . .$50 All Journal Ads Must Be Received by March 31, 2007. (Journal ads are 100% tax deductible.)
Name: Company: Address: City, State, Zip: Day Phone:
Night:Phone:
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LIAFLine
Research
Caregiver Intervention Postpones Nursing Home Placement Spouses of Alzheimer’s disease clients are less likely to put their loved ones in a nursing home if they receive enhanced caregiver support and counseling, according to a study published in the November 14, 2006, issue of Neurology, the scientific journal of the American Academy of Neurology. Researchers say their findings could potentially save millions of dollars in nursing home care costs. The NYU study by Mary S. Mittelman, Dr.PH; William E. Haley, Ph.D; Olivio J. Clay, MA; and David L. Roth, Ph.D began in 1987, and followed spouse caregivers through nursing home placement and death of the client. The end result: Clients whose spouses received extra support experienced a 28.3% reduction in the rate of nursing home placement compared with usual care controls. The results make it clear that psychosocial interventions are essential components of optimal treatment for people with chronic diseases such as Alzheimer’s disease. Further research on these and other psychosocial interventions may result in even greater benefit to the millions of
older adults with chronic illnesses, and the family members who are essential to their care. Researchers studied 406 spouse caregivers in New York, NY, over a 19-year period. Half of the spouses received standard care, while the other half received enhanced counseling and support, including six sessions of individual and family counseling, support group participation, and availability of ad hoc telephone counseling. The study found caregiver spouses who received the enhanced counseling and support intervention delayed placing their ailing spouse in a nursing home by one and a half years compared to caregiver spouses who received less care. “Interventions that help reduce nursing home placement without overburdening family members will be essential for our society, which is faced with a projected tripling of cases of Alzheimer’s disease in the decades ahead,” said Mary Mittelman, Dr.PH, with New York University School of Medicine. “Given the average cost of $65,000 for nursing home care in the United States in 2006, a delay in placement of one and half years represents about a $100,000
savings per patient.” The study also found increased satisfaction with social support and a greater tolerance for client behavior accounted for 61 percent of the enhanced intervention’s beneficial impact on delaying the placement of clients into nursing homes. “Delaying placement was not accomplished at the expense of the caregiver’s well-being. Caregivers in the treatment group were not only able to keep their spouses at home with them longer, but as a result of the intervention had greater tolerance for patient memory and behavior problems, improved satisfaction with the support provided by family and friends, and fewer symptoms of depression,” said Mittelman. Mittelman says greater access to effective programs of counseling and support could yield considerable benefits for caregivers, people with Alzheimer’s disease and society. The study was supported by the National Institute of Mental Health, the National Institute of Aging, the New York University Alzheimer’s Disease Center, and the Florida Alzheimer’s Disease Research Center. ❍
Support LIAF LIAF would like to thank you for your loyalty. As you know, LIAFLine is our complimentary newsletter, which circulates three times per year. The extensive distribution of LIAFLine tells us here at LIAF that our newsletter is both informative and valuable to our readers, and we strive to continue along that path. It is our intention to continue LIAFLine as a free publication, but as our readership continues to grow, our print and postage costs are also increasing. We turn to you, our loyal readers, to aid us in the continuation of a free LIAFLine. Within this issue you will find a small donation envelope; any assistance would be greatly appreciated. Thank you again for your generous support. ❍
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Coping and Caring
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Alzheimer’s “Coping and Caring” Conference & Expo AN INFORMATIONAL CONFERENCE FOR FAMILIES AND PROFESSIONAL CAREGIVERS DEALING WITH ALZHEIMER’S DISEASE AND RELATED DEMENTIAS. Wednesday, March 21, 2007 Crest Hollow Country Club, Woodbury NY 9:00 AM to 3:30 PM $75 for Family Caregivers, $125 for Professionals Includes Continental Breakfast, Lunch and Program Materials
KEYNOTE ADDRESS: Dr. Norman Relkin, Associate Professor of Clinical Neurology and Neuroscience, New York Presbyterian/ Weill Cornell Medical Center For more information, call LIAF at 516-767-6856 ■ Yes, I will attend the Conference. My payment is enclosed. No tickets will be issued. Your name will appear on a list at the registration table.
LIAF is providing on-site respite for those who need it.
■ Yes, I want an exhibit table to display my organization’s materials.
Name
■ Exhibit Table @ $200 (includes meals and materials for one person). ■ Electricity $50 ■ Additional person(s) at exhibit table @$25 each (Limit of 2). ■ I cannot attend. Enclosed is $15 for program materials. ■ I cannot attend. Please accept this contribution of $________ to support your work. Total Amount Enclosed: $ ________ Number of people attending: _____
■ YES
Name: Daytime Phone: Organization: Address: City/Town: State:
Zip:
Make checks payable & mail to: LIAF, 5 Channel Drive, Port Washington, NY 11050 Deadline for registration is March 15, 2007.
LIAFLine
Treatments Antipsychotics
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increased risk of death in elderly dementia clients taking such antipsychotics including the aforementioned Risperdal, Seroquel, Zyprexia; plus aripiprazole (Abilify), clozapine (Clozaril), ziprasidone (Geodon), and olanzapine/fluoxetine (Symbyax). A black box or blackbordered warning, is a type of eye-catching graphic that appears on prescription drug information, wherein that drug may cause serious or even life-threatening adverse effects. It is the strongest warning that the FDA requires. In a number of trials of Abilify, Risperdal, Seroquel and Zyprexa among approximately 5000 aggregate subjects, many reports showed statistical increases in mortality. The rate of death was about 4.5 percent, compared with a rate of 2.6 percent in placebo clients. Causes of death included heart failure, sudden death, or infections, particularly pneumonia. Antipsychotics have also been shown to increase the risk of diabetes and stroke. These drugs fall into different classes based on chemical structure, and because the mortality risk was seen in all of them, the FDA required Clozaril, Geodon, and Symbyax, a combination product used to treat bipolar disorder, to also carry the same warning. Late last year, another article appeared in the New England Journal of Medicine that reported that the older, conventional antipsychotic medication is at least as likely to increase the risk of dying among elderly patients as the secondgeneration agents, and that conventional antipsychotics should not therefore be viewed as ready replacements for atypicals discontinued because of the FDA warning. As such, the increased 10
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risk may be an antipsychotic “class” effect, and must be balanced against the perceived usefulness of these agents by treating clinicians. “I can’t agree with it (the negative publicity) all. I think these drugs have an important place in controlling agitation for some patients. Many doctors use them,” said LIAF Medical Advisory Board member Dr. Arnold P. Levy of Long Island College Hospital, who did note Zyprexa’s particular notoriety for weight gain. “The concern is metabolic syndrome… but even with that, I had a family demand that I put their loved one back on this drug. These drugs work for some patients. You draw from your experience; you inform the patient and family about the risk/benefit ratio, and with their agreement you use clinical judgment. You need to use discretion as to what works for what people.” “I think they may have been dispensed too liberally,” said Dr. Max Rudansky of Huntington Hospital. “There is a ‘gray zone’ for first level behaviors. It still has a role, particularly at the point of hallucinations or delusions. I think the issue was indiscretion, especially with nursing homes that oversedate. So there was a pulling back.” Dr. Rudansky recommended more discrimination in usage and discussion with caregivers to prescribe in a more judicious way. He compared keeping clients home using Seroquel or Zyprexa versus placement in a facility. “In my experience, they are still best to use when (the client) is very paranoid.” All experts agree that extra care should be taken first to
ensure that agitation is not related to environmental, medical or social factors that can be addressed non-pharmacologically. Staff in adult care and skilled nursing facilities may need additional training in behavioral techniques to calm residents without medication. ❍
Memory Lane Club Openings The Memory Lane Club, LIAF’s social model adult day services program, has several openings in its weekday program. Memory Lane Club hours are Monday and Wednesday from 10 AM to 2 PM, and Tuesday, Thursday and Friday from 10 AM to 4 PM. The Memory Lane Club is closed on Saturdays and Sundays. For more information, please call 516-767-6856.
Births!!! Welcome Back Stephanie DePalma, Director of Day Programs, after your newest addition, Samantha Rose DePalma Born August 11, 2006 Congratulations Tori Cole of LIAF's In-Home Respite Program, on the birth of Olivia Ryan on September, 4, 2006 Congratulations Barbara Vogel, Director of Social Services Staff, in Welcoming Your New Granddaughter, Sophie Pearl, born November 27, 2006
Help LIAF
Serve You Better... W
e at LIAF are keeping warm with thoughts of spring and all that comes with it. Although we realize that warmer weather is still a few months away, we are thinking ahead by beginning our spring-cleaning early this year. First on the cleaning agenda— updating our mailing database. LIAF realizes that our readers’ lives are continually changing and your family’s lifestyle or address may have changed as well. We hope that you have found our newsletter valuable in the past and would like to continue receiving it. If changes need to be made to your address or if for any reason you would like to be removed from our mailing list, please indicate so on the form below and return to LIAF. Also, to better serve our readers, LIAF is now offering to send a reminder email when a new issue of LIAFLine is posted on our website. For those people who prefer to obtain their newsletter from the Internet, our reminder email will be sent directly to your personal email account. (Note: If you choose to receive our email reminder, you will no longer be sent a hard copy. Otherwise, paper copies will continue to be sent out in their traditional fashion.) If you would like to begin receiving our LIAFLine reminder, please fill out the attached mailer below and return it to LIAF. ❍
■ My new address is indicated below. ■ I no longer have the need for LIAFLine, please remove me from your newsletter mailing. ■ I would like to be removed from all LIAF mailing lists. ■ I would like to be sent an email to remind me to download LIAFLine from your website. (I will no longer receive a hard copy in the mail) (Please Print Legibly) Name Organization (if applicable) Address City Phone
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LIAFLine
Happenings
Dr. Norman Relkin Presents at LIAF Dr. Norman Relkin, Associate Professor of Clinical Neurology and Neuroscience at New York Presbyterian Hospital/Weill Cornell Medical Center in Manhattan, presented his Phase 1 findings of an investigational treatment for Alzheimer’s disease at LIAF on October 24. The clinical research study tests intravenous immunoglobulin (IVIg), which contains antibodies that are delivered through the blood, to determine its effects on the symptoms and progression of AD. Targeted is A-beta 42, a protein fragment made by the brain that accumulates to form amyloid deposits. In AD, these deposits attack the connections between nerve cells. In his research, the human antibodies in immunoglobulin removed brain plaque and were successful in preserving memory. The Phase 2 study is a great commitment for clients and their families. Qualified candidates must already have a diagnosis of AD with symptoms in the mild to moderate range, and in good general health with no history of heart attack or stroke. Clients
must have taken at least one approved Alzheimer’s medication, must be willing to participate in a placebo-controlled study, and have someone accompany them twice a month for six months, for study visits. Dr. Norman Relkin is the scheduled keynote speaker at the LIAF “Coping & Caring” Conference & Expo on March 21, 2007. ❍
Pictured at right, Dr. Norman Relkin discussed an investigational treatment for Alzheimer‚s disease at LIAF on October 24, 2006.
LIAF Gives
This holiday season, the Long Island Alzheimer Foundation collected several hundred pounds of non-perishable food for Long Islanders who are less fortunate. Naisha Venson of Island Harvest visited LIAF on December 11, 2006, where she spoke to Al'z Club members about ending hunger and reducing food waste. Pictured are Harold Doliner, right, presenting a total of 7 boxes of food to Naisha Venson, left, of Island Harvest. ❍
Please Place Your Stamp Here
5 Channel Drive Port Washington, NY 11050
LIAFLine
Services
Workshops An estimated 150,000 individuals on Long Island suffer from Alzheimer’s disease. This number is much higher when you include the additional family members also affected by the heartbreaking disease. To help the public understand this disease, LIAF offers expert speakers, free of charge, to libraries, senior centers, and assisted living facilities on the following topics: All about forgetfulness A discussion of what is normal when it comes to “forgetting” and “remembering” as we age, reversible causes of memory loss, the importance of diagnosis, how to get a loved one to see a doctor, what to do when a loved one resists assistance, tips on successful aging, and independent activities of daily living. Understanding & Coping with Behavioral and Communication Changes Overview of behavior problems, including wandering, bathing, sundown syndrome, sleeping disturbances, hostility, the problemsolving approach to problem behaviors, guidelines to dealing with behavior problems, and how to communicate (verbally and nonverbally) with a person with memory problems, and dementia. The Geriatric Assessment Process Planning for current and future needs, adult day care, nursing homes, assisted living, home care, home safety, and easing the transition from home to nursing home or assisted living. Optimal Nutrition and the Aging Process The influence of nutrition on aging, improving quality of life in later years, nutrient needs of seniors, preventive nutrition therapy, relieving symptoms of menopause and diseases of age, supplements, exercise, and planning balanced, easy-to-prepare meals.
Elder Law Medicaid issues, estate planning, wills, transferring of assets, guardianship and other legal issues. Stress Reduction – the Emotional Health of the Caregiver Special needs of spouse and adult children caregivers, what is “stress,” how to recognize signs of stress, positive ways to relieve stress, and holistic health. Alzheimer’s Diagnosis – What to Do? Effects of Alzheimer’s on the family and how to cope, communication, choosing a living situation, day care (social and medical models), and maintaining dignity and respect. Financial Options for Long Term Care Long-term care insurance, reverse mortgages, and viatical settlements. Alzheimer’s 101 A question and answer session for caregivers. Bereavement Issues Progression of Alzheimer’s, dealing with loss, disenfranchised grief, and end of life decisions. Workshops are offered free of charge as a public service. For more information, please contact Stephanie DePalma at 516-767-6856. ❍
All About Forgetfulness
Dr. Gisele Wolf-Klein, LIAF Medical Advisory Board member and Doctor of Geriatric Medicine at North Shore/Long Island Jewish Hospital, presents to the Hispanic community at Raices Corona Senior Center in Corona, NY on December 19, 2006. Memory screenings were also held as part of this free Workshop.
In Gratitude for Our Support Group Somewhere there are people to whom we can speak with passion Without having the words catch in our throats Somewhere a circle of hands will open to receive us all, Eyes will light up as we enter, voices will celebrate with us Whenever we come into our own power. Community means strength that joins with strength to do the work that needs to be done, arms to hold us when we falter. A circle of healing, a circle of friends, where we can be free. (Excerpt from “Dreaming the Dark” by Starhawk, submitted by Judi Talit, Adult Children Support Group) Winter 2007
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LIAFLine
Donations Memorials In Loving Memory Of:
Larry Dinkin's Mother
Kay Kouris
Sylvia Reynolds
Evelyn Vallone
Mildred Kuhn
Anthony Ripo
Florence Volpe
Lillian GerhardtStanco
Margherita DiPrima
Amelio LaBella
Anna Rizzuto
George Walsh
Rae Getzel
Sabina Dooling
Harry Leather
Anthony Romano
Jane DuVernoy
Beloved Mother Eleanor
Geraldine Lennon
Bud Rosenberg
Joan & John Wardrop
Joseph Grunder
Beloved Mother
Marguerite Feuer
Bertha Leskow
Simone Rosenberg
Hyman Weber
Barbara Himler Essie Hirsch
Father Marvin, Husband, Father, Grandfather Pedro & Children of Arlene
John Fiore
Barbara Litwin
Sidney Rosenblatt
Samuel Weinstein
Marie Fischetti
Eleanor Losquadro
Georgina Lucy Ross
Gustav Werner
Joseph Keegan
Josephine Loughlin
Hanan Rubin
Jeanette Williams
Eva Lamonte
Irma Lubin
Mary Ida Rurney
Theresa Wolf
Jeanne E. Leonard
Anne Wolff
Frances Lester
Joan Marie Fitzgerald Blanche Fox Angela "Jill" Franzini
John Angus MacDonald, Grandpa
Charlotte Satz
Lawrence Attard Madeline Aversano
Maria Fullam
Joseph Marzano
Elizabeth Schecker
Harold Francis Baldauf
Sylvester Gabler
Helen Mayers
Anthony Gallo
Fay Schnall
Maurice McCarthy
Edwin Baldwin
George Gardellis
Sidney Schnall
Rose Mehlman
Agnes Bartik
Estelle Gass
Andre Schoonebeck
Mary Mendelson
Ed's 60th Birthday
Priscilla Bashatsoulis
Lucy Gatoff
Bella Schwimer
Pearl Merenstein
Roslyn Berger
Harry Shapiro
Carmen Moffett
Alfred Shatkin
Robert Abrams
Molly Peck
Fay Bernstein
Rocco Nicholas Gentilissa
Toba & Joel's Anniversary
Sally Gibbons
Nancy Moore
Helen & Irving Siegel
Gertrude Abroff
Gloria Romuno
Regina Biscarra
Rhoda Siers
Antoinette Aimetti
Catherine Ruff
Bernice Bogash
Louise Gilchrist
Burton Morgan
John Giordano
Beloved Mother
Edward Skiseng
Mary Bonamassa
Hyman Glick
Frances Motisi Chrysantee Mustakas
Marie Bacik
Donald Schulman
Marie Brigante
Sara Gonzalez
Ray May Stein Tucker
Warren Alields's 70th Birthday
Regina Rule
Monica Bonagura
Victoria Bailos
Nellie Shek
Rosetta Buggs
Edward Gorski
Louis Stenglein
Jean Negri
Jeanne Sullivan
Ted Siegel
Anna Calcagno
Miceal Greene
Sam Barkan
Fred Nieder
Mitch Bland
Anthony Richard Campanella
Louis Grilli
Beatrice Tartamella
Pat Nigro
John Tassi
Alana Siev's Bat Mitzvah
Arthur Guest
Mary Borgs
Marion O'Brien
Maraquerite Hall
John Tatta
Janice Bourquin
Marianne Spina
Joseph Campise
Martin Okrend
Florence Hansen
Sal Tepper
Mitch Brand
Philip Spina
Raymond Casazza
Jean Passman
Marion Harvey
Rita Carroll
Emanuel Pearlmutter
Donald Bennett Thompson
Andrew Stathis
Veronica Caspary Sydney & Elaine Cass
Barbara Henley
Mary Percoco
Chapin Home Residents
Arthur Stecklow's 60th Birthday
Bert Hetchkop
Cecelia Peters
Linda Cronin
Dolores Zaffuto
Dorothy Chakoain
Seymour Hoheiser
Lucy Chapero
Charlotte Plambreck
Timothy Patrick Horan
Arthur Popper
Dominic George Ciesco Dorothy Cimino
Clara Horyczun Theresa Hucke
Adele Cohen
Brian Hunt
Dorothy Cohen-Maltz
Mary Izbicki
Theresa Compolongo
Mary James
Frances Mary Costello Michaelina Covino Angela Croce Helen Cronin Antonio D'Aquila Doris De Batt Chaim Demel Frances DeStefano
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Michael Henley
Winter 2007
Shirley Jersky Anna & Leo (Johnny) Johnson Jack Judge Anne Kapicic Bety Kaufman Lorraine Kendel Lillian Kessel Beverly Klein
Mother Bessie Trachtenbroit Mary Traina (Aunt Mary)
Francis Raab
Rocco Ralph Tumbarello
Carmina Racanelli
Mary Carmela Vacca
LLoyd Reeder
Angela Valensisi
Marcia Rendell
Marie Antoinette Valentino
Muriel & Sidney Resnick
Inge Levi
Robert Scharff
Honorariums In Honor Of:
Mary Lombardi Irma Lubin Rose Macero Edna McMahon Carol Meinhold Nettie Obodov
Marjorie Schreibman
Madelyn Dubiner Matt Dubiner Caroline "Omi" Engelmann Phyllis Etinger Bernard Fleischer Bob Gallagher
Josef Valgoi
To make a donation in memory or in honor of someone, or to celebrate a special occasion, please send your contribution to: LIAF • 5 Channel Drive, Port Washington, NY 11050 A personalized tribute card will be sent to the individual being honored or to the family of the person being memorialized. See coupon on opposite page.
HELP LIAF HELP OTHERS! I Wish to Make a Donation of $_______ to LIAF
Kindly send an acknowledgment to:
(A minimum gift of $10 is suggested) Contributor Name:
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❒ In Honor of ❒ In Memory of
Please make checks payable to: Long Island Alzheimer’s Foundation, Inc. 5 Channel Drive • Port Washington, NY 11050
Contributions to LIAF are tax-deductible to the full extent of the law. A copy of our most recent financial statement can be obtained from the NYS Office of the Attorney General, Charities Bureau, 120 Broadway, New York, NY 10271.
LIAF Product Order Form 5 Channel Drive, Port Washington, NY 11050
Newly Updated Edition Alzheimer's Directory of Services for Long Island
A Comprehensive, one-of-a-kind guide to resources and services available in Nassau, Suffolk, Brooklyn and Queens to individuals and families dealing with Alzheimer's disease and related dementias.
Publication Title
Qty
Cost
Total
Name:
About Alzheimer’s Disease
1.00
Address:
Caring For Someone With Alzheimer’s Disease
1.00
City/St/Zip:
About Choosing A Nursing Home
1.00
Telephone: (
About Entering A Nursing Home
1.00
About Paying for Nursing Home Care
1.00
About Hospice
1.00
About Dementia
1.00
Advance Medical Directives
1.00
About Do-Not-Resuscitate Orders
1.00
Life-Sustaining Treatments
1.00
Alzheimer's Directory of Services for Long Island Directory Print
50.00
Total Cost
)
Item “Caring Poster by Miriam Cassel” LIAF Cookbook Living With Alzheimer’s Video Series The Light of the Heart Meditations for Self-Healing CD by Judy Talit Guidelines to the Caregivers Audiotape
Cost 20.00 20.00 15.00
A Walk Down Memory Lane CD The 36-Hour Day When Meme Came to Live at My House Information Booklets - Total
15.00 15.00 5.00
Qty
15.00 5.00
(enter total in order form on right)
Total Cost (Prices include shipping & handling.)
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CHANGE SERVICE REQUESTED
NONPROFIT ORGANIZATION U.S. POSTAGE
PAID RED BANK, NJ PERMIT NO. 558
5 Channel Drive Port Washington, NY 11050
CALENDAR Upcoming Events... ■ March 19 & 20, 2007 Caregiver Trainings with Teepa Snow Locations TBA ■ March 21, 2007 19th Annual LIAF Coping & Caring Conference & Expo Crest Hollow Country Club Woodbury, NY ■ April 17, 2007 13th Annual Outstanding Service Awards Luncheon The Garden City Hotel Garden City, NY ■ June 18, 2007 14th Annual Golf Classic Sands Point Golf Club Port Washington, NY ■ July, 2007 Regatta to Remember Manhasset Bay Yacht Club Port Washington, NY
LIAF Products and Services ■ A Telephone Hot-Line open Monday through Friday, 9 AM to 5 PM. ■ A Resource and Referral Center, the largest of its kind on Long Island, has the latest information about Alzheimer’s disease, including fact sheets, pamphlets, books, magazines, newsletters, article reprints, videos, audiotapes and lists of support groups, nursing homes, day care programs, and related community organizations. ■ Staff Social Workers assist families with much-needed information, counseling, support, referrals and linkages to community-based programs. ■ Early Stage Program that includes weekly support groups plus Al’z Club, a weekly intellectual stimulation and socialization program. ■ The Memory Lane Club, a social model adult day services program, meets five days a week and provides Alzheimer’s clients with stimulating recreational and social activities and much-needed respite for their caregivers. ■ LIAFLine, a Free Informative Newsletter, with a distribution of close to 30,000. Includes articles about research, caregiving, medical developments and other important topics. ■ Support groups for caregivers. ■ Alzheimer’s Companions, an In-Home Respite Program offering companionship and cognitive stimulation to Alzheimer’s patients while caregivers take time off.
■ A Caregiver’s Friend, a telephone “buddy” program pairing trained volunteers with caregivers to offer reassurance, support and education. ■ Living With Alzheimer’s, an awardwinning trio of educational video programs, provides caregivers and health professionals with a thorough and supportive look at coping with Alzheimer’s disease. ■ Annual “Coping and Caring” Conferences and Free Workshops provide caregivers with timely information that can help the Alzheimer’s patient receive the proper medical treatment and help the caregiver cope with the stress of caregiving. ■ In-Service Training for medical, health, nursing home and home care professionals. ■ Alzheimer’s Disease Directory of Services for Brooklyn, Queens, Nassau and Suffolk, a comprehensive publication that assists caregivers with locating services, support groups, community services, nursing homes and other related organizations. ■ Guidelines to the Caregivers, an audiotape with many excellent caregiver tips. ■ The Happy Days Club a socially and physically engaging program aimed towards individuals in the moderate stages of Alzheimer’s disease. ■ A Speakers’ Bureau provides community groups with knowledgeable speakers. ■ Periodic International Research Symposia that assemble the world’s foremost Alzheimer’s researchers to collaborate on new treatments.