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New York State’s Alzheimer’s Association Chapters saw a 17-year fight come to an end yesterday when Gov. David Paterson signed the Family Health Care Decisions Act. This historic legislation allows family members to step in and make informed, humane decisions about their loved one’s care when no directives have been made.“I could not be more pleased to sign this bill into law today as it will help ensure patients receive medical care more quickly and will help avoid unnecessary suffering,” Governor Paterson said. “After nearly two decades of negotiations, New Yorkers now have the right to make health care decisions on behalf of family members who cannot direct their own care.”

This legislation is particularly important to individuals with Alzheimer’s disease or a related dementia. As the disease destroys a person’s cognitive abilities, making informed decisions about care may not be possible. The FHCDA allows family members to make the decisions which respect the wishes of their loved one. It also encourages New Yorkers to make plans in advance, declaring a health care proxy and defining their wishes in writing.

The Coalition of New York State Alzheimer’s Associations, of which the Central New York Chapter is a member, was a longtime advocate of the act’s passage.

Read, listen and watch coverage of the bill signing:

• 17-year quest for end-of-life law yields reform (Albany Times Union)
• Gov. Paterson Signs New Health Overhaul Law (WRVO)
• Paterson signs law allowing medical decisions without proxies (Your News Now)

Yesterday was one of the biggest days of the year at the Chapter. Our annual Facts & Figures report garners media attention from throughout the 14 counties and is a catalyst in motivating people for our cause. Here’s a rundown of newspaper articles and television reports from yesterday:

• WSYR-TV (Syracuse), which focused on Clay caregiver Tami Schanbacher.
• Syracuse.com/Post-Standard (Syracuse), which featured the report in its news and health sections
• The Observer-Dispatch (Utica), which had a lengthy article feature an interview with Saquoit caregiver Patrick Inserra.
• WKTV-TV (Utica), which featured Janice Durant, a caregiver from Oneida Castle. WKTV is a member of the Alzheimer’s Early Detetction Alliance and reporter/anchor Megan Koskovich is a member of our event planning committees.
• WWNY-TV (Watertown), which featured Limerick caregiver Yvonne Thompson and her husband Cecil. WWNY is also an AEDA member and news anchors Brian Ashley and Anne Richter-Ashley are longtime friends of the Chapter.
• News10Now (CNY), which reported the statistics.
• WAER-FM (Syracuse) conducted an interview with Tully caregiver and Chapter volunteer Kris Terrillion.
• The Ithaca Journal and The Press Sun-Bulletin (Binghamton) ran articles summarizing the statistics and the disease impact on the Southern Tier community.

WRVO-FM also taped a lengthy feature with Chapter CEO Catherine James and a 54-year-old Syracuse woman living with Alzheimer’s that will run this week.

We also put the call out to GO PURPLE! on March 9 and are pleased to see as many people as we did wearing purple in support of the cause, as our friends at WKTV and WWNY did. We are also pleased to report that more than 75 people became our friends on Facebook yesterday, a trend we are looking to continue over the coming weeks. If you are on Facebook and haven’t done so already, become a fan of our page. Once you become our friend, make sure to invite your Facebook friends to become part of the cause.

• 2010 Alzheimer’s Association Facts & Figures Report

Today’s release of the Alzheimer’s Association’s 2010 Alzheimer’s Disease Facts and Figures report shows that 5.3 million Americans, including more than 45,800 Central New Yorkers, have Alzheimer’s disease. The report also reveals that African-Americans and Latinos are twice as likely as whites to develop Alzheimer’s disease.

“Alzheimer’s disease is a significant threat not only for the nation, but also for the people of Upstate New York,” said Catherine James, Chief Executive Officer for Alzheimer’s Association, Central New York Chapter. “This disease does not discriminate based on race or ethnicity, nor has it stopped for the recession.”

Disease Prevalence
Based on Alzheimer’s Association studies, 5.3 million Americans have Alzheimer’s disease. This figure includes 200,000 individuals younger than age 65.

“Younger-onset Alzheimer’s is a growing concern,” James said. “These individuals are productive members of the workforce and active members of the community and a diagnosis of young-onset Alzheimer’s may mean retiring earlier than they had anticipated, or maybe sooner than they could afford to.”

Using the latest population projections from the U.S. Census Bureau, the Alzheimer’s Association, Central New York Chapter estimates that there were 45,836 people living with Alzheimer’s disease in its 14-county area in 2008. This is a 25.78 percent increase since 2000 and a 4.57 percent jump since 2006.

At 11,818, Onondaga County has the largest population of people with Alzheimer’s disease. Oneida (7,393), Broome (6,362) and St. Lawrence (2,637) follow. Chenango County has seen the largest net increase in people with the disease since 2000. Cases in the Southern Tier county have risen 38.92 percent over the past eight years. Oneida (38.81) and Cayuga (37.16) follow.

Impact of Caregiving
With family members providing care at home for about 70 percent of people with Alzheimer’s disease, the ripple effects of Alzheimer’s disease can be felt throughout the affected person’s entire family. According to Facts & Figures, caregiving is a $9.4 billion industry in New York State. In 2009, 720,796 caregivers, provided 820,842,714 hours of unpaid care for a loved one with Alzheimer’s or another dementia valued at $9,439,691,215. Only California and Texas have larger caregiving populations than the Empire State.

The economic downturn’s impact on caregiving is noted in a National Alliance Caregiving study cited in Facts & Figures. The survey shows 24 percent of family caregivers report cutting their expenses related to care. Of the 13 percent forced to increase caregiving expenses, the majority reported difficulty in paying for their own needs (65 percent) or saving for retirement (63 percent). Facts & Figures also reveals that more than 40 percent of family and other unpaid Alzheimer and dementia caregivers rate the emotional stress of caregiving as high or very high, compared with 28 percent of caregivers of other older people.

“The latest Facts & Figures report shows the significant impact of Alzheimer’s disease on the individual, the family, and state and federal government,” James said.

Special Report on Race, Ethnicity and Alzheimer’s Disease
Although whites make up the majority of the more than five million people with Alzheimer’s and other dementias, African-Americans and Latinos are at higher risk for developing the disease. African-Americans are approximately two times more likely and Latinos are approximately one and one-half times more likely than whites to develop a form of dementia. There are no known genetic factors that can explain the greater prevalence of Alzheimer’s, however some conditions related to ethnicity may increase the risk. High blood pressure, heart disease and diabetes, which are known risk factors for Alzheimer’s and other dementias in all groups, are more common among African-Americans and Latinos than in whites.

“The Alzheimer’s Association  is committed to increasing awareness about risk factors for Alzheimer’s and other dementias among all Americans,” said James. “Our programs and services team interacts regularly with Alzheimer’s disease in the African-American and Latino communities.”

Although African-Americans and/or Latinos are more likely than whites to have Alzheimer’s and dementia, they are less likely than whites to have a diagnosis of the condition. Delays in diagnosis mean that African-Americans and/or Hispanics are not getting treatment in the earlier stages of the disease when treatments are most effective and they also miss the opportunity to make legal, financial and care plans.

“Early detection, diagnosis and intervention are vital because they provide individuals the best opportunities for treatment, support and planning for their future,” said James. “We know many families miss the warning signs or mistakenly assume symptoms are a normal part of aging. The Central New York Chapter has worked hard to educate our community about those signs that may actually be cause for concern and warrant medical follow up.”

In the time it takes to read this post, someone will develop Alzheimer’s disease. Every 70 seconds, another American joins the 5.3 million people living with this devastating illness.

Since 1982, the Alzheimer’s Association has led the fight to defeat this disease. We are the only organization in American providing support to families touched by Alzheimer’s and funding the research that will lead to a cure.

On March 9, we are asking you to Go Purple! to bring awareness to our cause. It’s easy to do:

• Wear a purple article of clothing.
• Change the color of your e-mail signature to purple for the day.
• Light a candle at our Virtual Rally.
• Register for Memory Walk.
• Become an advocate.
• Subscribe to alzmail
• Encourage your friends, and Facebook and Twitter followers to do the same.

You play an important role in heightening the community’s knowledge of Alzheimer’s disease and our cause.

Thank you for all of your hard work!

The message behind the Bill DiCosimo Quartet’s new album “Threads” is a deeply personal one. The Syracuse-based jazz troupe blends Latin, vocal and instrumental jazz into 12 tracks on their second album, but the message is the backbone of each composition.

DiCosimo, who is also the chair of the music industry department at Syracuse University’s School of Visual and Performing Arts, was the primary caregiver for his father during his journey with Alzheimer’s disease. With his father’s passing in 2007, DiCosimo put his group on hiatus. Three years later, the group reformed, recorded and released “Threads.” The album, released just after the New Year, is dedicated to DiCosimo’s father.

DiCosimo (pictured at right) highlighted three tracks from the album for us. The first song, “Gone From This World,” speaks some about his father, but more to the greater picture of looking into the mirror and helping your fellow man. The title track, and its Spanish version “Hilos,” are written specifically in his father’s memory. DiCosimo said the tracks were his way of expressing the anguish of watching his father’s descent and passing from Alzheimer’s.

Proceeds from the sale of Threads will benefit the Alzheimer’s Association, Central New York Chapter. The album is currently available for download on iTunes and Amazon.com. CD’s or downloadable versions are available at CDBaby.com.

Tickets can be purchased now for A Night to Remember, presented by Brookdale Senior Living. The 2010 event is scheduled for April 9, 2010, from 7-10 p.m., at Valentino’s Banquet Hall in New Hartford.

Tickets are $50 for general admission and $75 for a VIP ticket and can be purchased by phone at 315-617-4025 x117 or online at our secure ticket center. General admission tickets only are for sale at Curves fitness centers in Herkimer, Little Falls, New Hartford and Utica. Guests who purchase a ticket at a Curves location will receive a free aqua massage from Body Solutions Salon & Spa in Whitesboro.

A Night to Remember is aimed at pampering local women, who sacrifice spending time on themselves as they juggle busy personal, family and professional lives. It features local therapists and aestheticians providing massages, manicures and other services. Businesses, including jewelers, artisans and clothing shops, will display their products to the more than 250 people expected to attend. A new VIP ticket level  offers exclusive benefits, including one-hour of early access to exhibitors and activities, a special food and wine pairing and VIP gift. The event is presented by Brookdale Senior Living Clare Bridge Clinton and Villas Sherman Brook. Last year’s event attracted nearly 200 people.

The National Alliance for Caregiving, a partner organization of the Alzheimer’s Association, published its 2009 report on caregiving. This is the first major update to their statistical report since 2004.

The report provides insight into what the American caregiver looks like and their attitudes toward caregiving. There are 43.5 million caregivers in the United States. What is no surprise is the leading condition for which they provide care — Alzheimer’s disease. AD is identified in 15 percent of all caregiving situations.

Among the other figures are:

• The average American caregiver is a 49.9 year old married, white female that works full-time and is college-educated.
• 19 percent of the U.S. population is a caregiver of someone 50 years of age or older.
• 74 percent are employed. More than 60 percent of those have had to leave work early, arrive late, take time off or make another work accommodation due to their role.

The full report is available as a PDF and can be downloaded from the Alliance.

Mohawk Valley Regional Director Julie Darling spoke with Channel 2 today about our own “holiday rush” — families calling our 24-hour Helpline after spending time with their families during a holiday.

Watch it online at NewsChannel2’s website.

The Alzheimer’s Association advocates efforts that increase early detection and diagnosis of Alzheimer’s disease, a degenerative fatal disease that currently affects approximately 5.3 million Americans. Alzheimer’s is a very complex disease and unfortunately today there is no quick and accurate test to determine whether a person has Alzheimer’s disease. The Alzheimer’s Association does not support community-based memory screening in general populations. The term, “memory screening” generally refers to the use of a brief mental status test that gives a numerical score to indicate the presence or absence of cognitive impairment.

Often these brief mental tests result in “false positives” and “false negatives.”  “False positives” occur when a person fails or scores poorly on a test but does not have Alzheimer’s disease or another dementia. This happens most often among ethnic minorities, persons for whom English is a second language and persons with low educational level. “False negatives” occur when a person “passes” or scores well on a test but actually does have Alzheimer’s disease or another dementia. This happens most often for persons with a high educational level.

The Alzheimer’s Association strongly believes any procedure that uses a score on a brief mental status test to indicate presence or absence of cognitive impairment should only be used in a physician office or medical clinic and not in nonmedical, community settings, especially when the test is conducted by individuals without proper training. Accurate diagnosis of Alzheimer’s disease requires a comprehensive diagnostic evaluation by a qualified physician that should include: a thorough review of a person’s medical history, physical and neurological exams, laboratory tests, and imaging tests. Interviews with family members or close friends about changes in a person’s cognitive functioning and behavior should also be conducted whenever possible.  A diagnostic evaluation based on all of these elements provides the best possible assurance that the resulting diagnosis will be accurate and the appropriate follow up will be conducted.

The Alzheimer’s Association has developed a list of the 10 Warning Signs of Alzheimer’s.  If you’ve experienced any of these warning signs, it’s important that you see a physician who is experienced in diagnosing and treating Alzheimer’s.

Ten Warning Signs of Alzheimer’s

1. Memory changes that disrupt daily life.  One of the most common signs of Alzheimer’s, especially in the early stages, is forgetting recently learned information. Others including forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.
2. Challenges in planning on solving problems.  Some people may experience changes in their ability to develop and follow a plan or work with numbers which may include challenges following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
3. Difficulty completing familiar tasks at home, at work at leisure. People with Alzheimer’s often find it hard to complete daily tasks, which may include difficulty driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.
4. Confusion with time or place. People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
5. Trouble understanding visual images and spatial relationships. For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room or they may be unable to recognize their own reflection.
6. New problems with words in speaking or writing. People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”).
7. Misplacing things and losing the ability to retrace steps. A person with Alzheimer’s may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they accuse others of stealing which may occur more frequently over time.
8. Decreased or poor judgment.  People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money or give large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.
9. Withdrawal from work or social activities.  A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping with up a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.
10. Changes in mood and personality.  The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious.  They may be easily upset at home, at work, or with friends or in places outside of their comfort zone.

Launched today, the Alzheimer’s Association Comfort Zone™, powered by Omnilink, is the first comprehensive location management system designed specifically for Alzheimer’s, giving people with the disease more freedom and independence in their community while providing their family some peace of mind. Comfort Zone is a Web-based application that works with various location devices throughout the progression of the disease to proactively communicate the location of the person with Alzheimer’s within two to 30 minutes, based on the family’s selected plan. Comfort Zone also offers families assistance with 24/7 monitoring center services and access to emergency health records from the MedicAlert Foundation.

“We are particularly excited about Comfort Zone because for the first time, we have technological device that is reliable and easy to use,” Catherine James, Alzheimer’s Association, Chief Executive Officer, said. “Comfort Zone is another level of safety that caregivers can use at home to keep an individual out of a facility and in a familiar and safe environment.”

As Americans continue to live longer, prevalence of Alzheimer’s is expected to skyrocket in state from the current number to as many as number by 2050, according to the Alzheimer’s Association 2009 Alzheimer’s Disease Facts & Figures report. In addition to its slow, fatal progression, Alzheimer’s poses immediate safety concerns for people living with the disease and enormous challenges and stress for their 10 million family caregivers. The Alzheimer’s Association, Central New York Chapter estimates that there are more than 45,200 people in our region living with Alzheimer’s.

“As the Alzheimer’s epidemic gains momentum, the Alzheimer’s Association is committed to educating families about how to keep people with Alzheimer’s successfully in the community for as long as possible,” said Beth Kallmyer, MSW, director of Family & Information Services at the Alzheimer’s Association. “Comfort Zone is an interactive safety service that allows people with the disease to be more active and caregivers be more confident whether they are in the same house, down the street, at work or across the country.”

Comfort Zone combines the latest technology with flexibility, allowing families to change devices and plans as a person’s disease progresses and monitoring needs change. Using GPS and cellular technologies with online mapping, Comfort Zone allows the entire family to proactively determine the location of the person with Alzheimer’s. Families log into a secure, password-protected Web site similar to logging into most email systems and proactively establish safety zones. If the person with Alzheimer’s travels beyond the pre-set zones, they receive alerts via text or e-mail within 15 or 30 minutes, depending on the device and service package purchased. These zones and alerts can be adjusted to meet the family’s needs as the disease progresses. Additionally, families can determine location within two minutes by initiating a “Find Me” or a longer “Follow Me” session, which provides updates every two minutes for one hour.

“Omnilink is pleased to partner with the Alzheimer’s Association and power the Comfort Zone application,” said Wain Kellum, CEO of Omnilink. “This is a great opportunity to use our advanced location-based services platform to give families flexible care options and choices throughout the progression of the disease.”

The price of the Comfort Zone service packages varies, beginning at $42.99 a month with a $45.00 activation fee, similar to most cell phone services. For more information or to purchase Comfort Zone, visit the Alzheimer’s Association at www.alz.org/comfortzone or call 1-877-ALZ-4850 (1-877-259-4850).