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Volume 8, Number 3 / March, 1998

PUBLISHED BY THE FLORIDA DEPARTMENT OF ELDER AFFAIRS • E. BENTLEY LIPSCOMB, SECRETARY

In Memoriam Charlotte Brayer

MED SCHOOL FOR ELDERS? Bill proposes co-op between FSU and Mayo Clinic

1922-1998 Elder-law expert Charlotte Brayer, 75, died Feb. 9 after battling cancer, leaving a record of outstanding service to older Floridians and the law. Brayer’s varied career was marked by public service and tireless energy. She worked in the Foreign Service before entering the education field, rising to school superintendent in Attica, N.Y. After retiring, Brayer toured the nation, evaluating law schools for a third career specializing in elder law. She graduated from Florida State University College of Law at age 64. Brayer’s legal career was distinguished. Establishing a Tallahassee practice in 1988, she did most of her work for elders at no charge. Serving from 1991 until her death as a volunteer with the Department of Elder Affairs, she advised state leaders on a wide range of legal issues involving elders. She also wrote frequently for this newspaper. Honored several times by state organizations for her work in elder law, Brayer received the prestigious President’s Award for the National Academy of Elder Law Attorneys in 1997. In 1992, she told Elder Update, “Things don’t have to be left as they are — you can work to bring about change.” Said Elder Affairs Secretary Bentley Lipscomb: “She lived those words. Now Charlotte’s dedication stands as her testament to us all. We’ll miss her.”

By Dave Bruns /Elder Update correspondent oncerned about health care C for Florida’s rapidly growing elder population, state lawmakers want to create a new state medical school that focuses intensively on elder-oriented care. Under a bill by Rep. Durell Peaden, R-Crestview, the new medical school would be a cooperative effort between the prestigious Mayo Clinic and Florida State University. Rep. Peaden’s bill provides for the creation of a four-year medical school focused on recruiting and training medical professionals to treat elders. Students would spend two years in Tallahassee, working in classrooms and learning in local hospitals. Two years of additional training would be coordinated by the Mayo Clinic in Jacksonville. Rep. Peaden said the bill is a response to the aging of Florida’s

“Florida has needed a special focus on elder-oriented medical training for a long time.” — E. Bentley Lipscomb, secretary, Florida Department of Elder Affairs. population, which includes more older people than any other state in the nation. For years, none of Florida’s universities mandated training for would-be doctors in the special health needs of elders — even

though a majority of most physicians’ patients are older people. Even today, training in elderoriented care at existing Florida university medical schools varies widely. Frequently, information Continued on page 19

Special section focuses on Alzheimer’s By David Lee Simmons /Elder Update editor

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t has been called “Florida’s hidden epidemic,” particularly because it cripples a population large enough to form a major metropolitan area. It is Alzheimer’s disease, a terminal memory disorder that affects 4 million Americans and 370,000 Floridians. It is also a disease that most people want to ignore. But as part of a continuing effort by the Florida Department of Elder Affairs to provide more in-depth coverage of the crucial issues facing elders today, Elder Update devotes half of this month’s issue to the disease. This special section is the second in a series of packages, following the inaugural section on osteoporosis back in October.

The sheer magnitude of the affects of Alzheimer’s disease inspired us to increase the size of this special section to 12 pages from the original eight. In this section, entitled, “There is Help, There is Hope,” you will learn about how the disease robs people of their memory, how researchers are fighting for a cure, how to look for the warning signs, and how to seek help. But most of all, you will learn about the valiant effort of the caregivers of those with Alzheimer’s. We hope that by the end, you will better understand the complexity of this sophisticated and elusive killer of memory and life, and be better prepared to join the fight.

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We should remember our forgotten heroes By Lois Erisey Poole

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ar is a very traumatic period in anyone’s life and while all of us decry the act of war we tend to forget most of the men and women who fought to retain peace within our country. We celebrate when treaties are reached; we laud the generals who gather around tables to sign important documents; we have parades to show appreciation to the returning heroes; we search for years to find those missing in action; we have graveside ceremonies to honor those lost, but what about our grass-roots heroes? Most of our veterans have not received medals to pin upon their chests. Most of them never attained the rank of officer in the branch in which they served. Most of them were never called “hero.” Our veterans didn’t shirk their duty when they were called; they followed orders and did the job they were asked to do. Many of them were cold, hungry, wounded homesick 20-year-olds who slogged their way through snow and mud to keep us safe. They never received accolades of glory. They simply picked up their discharge papers, went home and continued with their lives. And even though those few years in their youth were traumatic and imprinted in their minds forever, they always displayed pride when they donned their uniforms. That pride still shows today when the veterans hold their heads high as they stoically follow the colors and march in parades down main street. We owe our lives and our freedom to the common men, unimportant men,

Your Comments Are Important to Us! Elder Update recognizes corporate members of the Elder Floridians Foundation, Inc. Such recognition does not constitute an endorsem*nt by the Department of Elder Affairs of the products or services offered by corporate members Editor, David Lee Simmons Database Manager, Bonni Singer Elder Update (USPS 403-710/ISSN 1060-4545) is published monthly by the Department of Elder Affairs.

POSTMASTER: Send address changes to: ELDER UPDATE Department of Elder Affairs P.O. Box 10118 Tallahassee, Florida 32302 Periodicals postage paid at Tallahassee, FL Information contained herein may not be reproduced or reprinted without permission.

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“disposable” men who plodded their way across Europe and Korea; to the faceless, small town boys who fought from their ships in the Pacific; to the unknown Vietnam jungle fighters and the “expendable” men and women who lived with Lois Erisey Poole sand fleas, burning heat, and fear in the Arabian desert. These are the people, not the mediaexperienced generals and politicians, who put their lives on the line to protect our way of life and keep us safe. These unexceptional men and women with their exceptional patriotism, loyalty, and determination were the power behind our successes. I am proud to know that despite all the negative coverage of the youth of today, our generation produced the men and women of Desert Storm who came equipped with the integrity instilled by their parents and grandparents. When the chips were down, they duplicated the same unwavering support of country and protection for family as did the brave, unrenowned warriors of the past. All our battles have been won by the unheralded, unsung majority who have given us everything we have today. And as long as America maintains its status of being a nation of steadfast, ordinary people, I will feel safe. Because it’s those ordinary people — those grassroots folks capable of extraordinary allegiance when duty calls, who will always be the real wartime heroes.

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The Customers Always Write Dear Editor, I am a long-time subscriber of the Elder Update and wish to tell you that it is one of the most appreciated publications that I receive. Everyone associated with its publication deserves to be complimented for their efforts in producing this periodical. I’ve just finished reading the November issue and wish to provide the following comments: 1. The “Gramps” comic strip is great. Please keep it in. 2. I agree completely with Editor David Lee Simmons’ Letter from the Editor in that issue regarding the content of Elder Update. I appreciate his approach of publishing articles on topics from ALL angles. This is

a responsibility of any publication such as yours. 3. What I found missing in the Dave Stanton article on Page 17 of the November issue (Breaking down 1998 Medicare HMO rates for Florida) was whether the rates shown in the chart are monthly, quarterly or annual rates? Keep up the fine work, Bill, Niceville (Editor’s note: We received this letter after we had published a clarification in the December issue saying that the rates were monthly.) Dear Editor, Recently by following the advice I read in a money magazine I received a shock when I read my bank statement. The advice was

to notify both the bank and the recipient of an electronic transfer of funds. So, I send letters to both parties stating that I was terminating payment by electronic transfer. Lo and behold my bank charged me $27 for a Stop Payment. Naturally I questioned the charge, stating that a no Stop Payment had occurred as the recipient had not requested a transfer of funds. After a futile discussion with the supervisor, as she was adamant, I asked to terminate my account with the bank immediately as other local banks are more amenable to senior citizens. Instant refund of $27. Phyllis, Orlando

Dear Editor, Recently a client served by myself had a fiscal problem. His HMO used a dental contracting group to provide services for its clients. I found that a participating dentist provider overcharged about $530. This was totally unacceptable. Subsequently, a check close to $500 was remitted to my happy client. Much to my surprise this client is donating a portion of his personal portfolio to the facility that is housing our SHINE (Serving Health Insurance Needs of Elders) program as a way of saying thanks to SHINE. Cyrus, West Palm Beach

Prudential Health Care

Prudential Health Care is a corporate member of the Elder Floridians Foundation, which partially underwrites Elder Update.

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Updating the Consumer Directed Care Demonstration project

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hey (the providers) tell you when they are coming and if it’s not convenient, or you don’t feel well, or you have a doctor’s appointment, it’s very difficult to reschedule,” said a 71-year-old woman expressing her desire to have more control over scheduling her personal care worker. This was not the first time that Consumer Directed Care project staff had heard this kind of statement from people receiving services under the current system. And that’s what the Consumer Directed Care demonstration is all about: to see if with proper training and support, the people actually receiving the help can choose the

kind of assistance which will make the biggest impact on their lives. The Consumer Directed Care Project will help people who want to have more choice, more control, and more personal responsibility for managing the dollars budgeted for their care. It will give those who participate the freedom to customize their care to fit their needs, goals and lifestyle. Participants will be given control of a budget to purchase the services, equipment and supplies they need from providers they choose. The goals of the project are to increase choice, satisfaction with care, and the amount of longterm care services obtained.

Wyeth Ayerst

Consumer Directed Care is based on the belief that people receiving help should be able to make choices that work best for them. People who are interested and are randomly selected to manage their own care will be trained and supported by a consultant. Consultants will make sure everyone has the training and resources needed to successfully manage their own care. In addition, a bookkeeping service will be available to help people manage their care budget and tax responsibilities related to hiring their own care providers. The state released a Request For Information (RFI) in November to identify vendors interested in providing the bookkeeping service for project participants. The selection of a bookkeeper provider will be based on a formal proposal process this Spring. Early this year, project staff will develop a training program to prepare both consultants and participants for the demonstration. Regional training of consultants will

be implemented in May and June. Training and resource manuals will be developed for both consultants and participants. Project staff has already begun reviewing training manuals obtained from programs in other states. The Technical Advisory Group had its first meeting in December to provide assistance with the project design and plans for implementation. The group is made up of providers, family members, advocacy group members, and self advocates from around the state. Two of the self advocates have successfully hired and managed personal care attendants in the past, including payroll and employer tax responsibilities. Elders are represented on the Consumer Directed Care Technical Advisory Council by one Area Agency on Aging, five service providers, four consumers and two caregivers. The group is scheduled to meet again in February to work on a training manual for project participants who will manage their own care.

You will find Marriott Senior Living Services properties in the following areas: Boca Raton Naples Stratford Court, 800/464-1947 Brighton Gardens, 941/566-8077 Boynton Beach (opening Feb. 1998) Brighton Gardens, 561/369-7919 Orlando Coral Springs Village Oaks at Conway, 407/896-1825 Park Summit, 954/752-9500 (opening July 1998) Deerfield Beach Palm Harbor Forum at Deer Creek, Coral Oaks, 813/787-3333 305/698-6269 Startford Court, 800/772-2622 The Horizon Club, 800/223-9624 Port St. Lucie Fort Myers Brighton Gardens, 561/335-9990 Calusa Harbour, 941/332-3333 Venice Springwood Court, 941/278-0078 Brighton Gardens, 800/449-5598 Fort Lauderdale West Palm Beach Tiffany House, 954/563-3116 Brighton Gardens, 561/686-5100 Maitland (Orlando) Fountainview, 561/697-5500 Brighton Gardens, 407/645-3990 Winter Springs Village Oaks at Tuskawilla, 407/699-7999 Marriott is a corporate member of the Elder Floridians Foundation, which partially underwrites Elder Update.

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A hard-learned lesson on Medicare reimbursem*nt here is nothing more distressing to a SHINE (Serving Health TInsurance Needs of Elders) counselor who loves to help people than those occasions when all the talents, skills, and training cannot undo the consequences of a unwise decision. Such was the recent case for one of Shirley Soule’s volunteers. Shirley is the Orange County SHINE Local Volunteer Coordinator. Medicare beneficiary Ed S. (not his real name), was diagnosed with

prostate cancer and after surgery had a problem with fluid retention in his right leg. The surgeon prescribed physical therapy. Ed did not know exactly how to go about finding a physical therapist, so he did what many of us do. He looked one up in the Yellow Pages and chose the one most convenient to his home. When Ed met with the therapist, he asked the important question, “Do you take Medicare?” Ed remembers

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re you worried that an elder relative or friend

may be the victim of abuse? You can report known or suspected cases of abuse by calling the State of Florida’s hotline at 1/800/96 -ABUSE (962-2873)

the therapist saying, “No, but I’ll file for Medicare reimbursem*nt for you.” So Ed allowed the therapist to treat him and paid for the treatments, expecting Medicare reimbursem*nt, H E R O E S which turned out to total $865. Ed has since learned a hard and expensive lesson: His were admirable but to no avail. therapist was not a MedicareEd asked us to share his story approved physician and never because he knows now where he intended to apply for a Medicare ID went wrong, and he wants others number. He told Ed it was because to benefit from his experience. He’s he had such a small volume of grateful to the SHINE volunteer Medicare patients, and it took too who tried to find a way to recoup long to get paid by Medicare. his money. This should have raised a warning SHINE volunteers are available flag to Ed, knowing what he knows in 54 of Florida’s 67 counties, about Medicare’s payment proceready and willing to educate, dures. The therapist did submit Ed’s counsel and advocate for Medicare claims as he said he would, but beneficiaries. They want to work without a Medicare ID number, the with you to understand and follow claims were repeatedly rejected for Medicare’s rules before an unnecespayment. sarily costly lesson is learned. To And without the cooperation of locate a SHINE counselor in your the therapist to file the necessary area, call the Elder Helpline at Medicare provider information, the SHINE counselor’s advocacy efforts 1-800/96ELDER.

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HINE (Serving the Health Insurance Needs of Elders) is a free insurance counseling program designed for elders and their caregivers. Highly trained volunteers assist elders with their health insurance questions. If you need assistance with Medicare, Medicaid, or health-related insurance, a SHINE volunteer counselor can help. Call 800/963-5337 for the SHINE site nearest you. SHINE has counselors in the following counties:

Florida Power

ALACHUA BAY BRADFORD BREVARD BROWARD CALHOUN CHARLOTTE CITRUS COLLIER DADE SESOTO DUVAL ESCAMBIA FRANKLIN

FLAGLER GADSDEN GILCHRIST GULF HARDEE HERNANDO HIGHLANDS HILLSBOROUGH HOLMES INDIAN RIVER JACKSON LAFAYETTE LAKE LEE

LEON LIBERTY MANATEE MARION MARTIN MONROE NASSAU OKALOOSA OKEECHOBEE ORANGE OSCEOLA PALM BEACH PASCO PINELLAS

POLK PUTNAM SANTA ROSA SARASOTA SEMINOLE ST. JOHNS ST. LUCIE SUWANEE SUMTER VOLUSIA WAKULLA WALTON WASHINGTON

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How to give a lasting tribute A memorial gift to the Elder Floridians Foundation, Inc. is a loving and lasting tribute. Remembering a deceased relative or friend helps to serve the living through the publication of Elder Update. Acknowledgements of memorials and other remembrances are always mailed to the family and no reference is made to the amount of the gift. The name of the individual being honored is published in Elder Update. To acknowledge your gift to the family, please send the appropriate name and address. Memorial gifts may be made by sending your check to Elder Floridians Foundation, Inc., P.O. Box 10118, Tallahassee FL 32302-2118.

Elder Floridians Foundation, Inc. Memorial Gift in honor of…

Josephine Wasch

Mitzi Joyce (Mary Triplett)

Caring For The Hearts of Central Florida Cardiovascular disease continues to be the No. 1 killer of men and women in the United States, claiming the lives of over 41 percent of the Americans who die each year. And, more than 57 million Americans have some form of cardiovascular disease. These are certainly frightening numbers. However, Central Floridians who don’t want to be included in these statistics can look to Orlando Regional Healthcare System for excellence in wellness programs, cardiac treatment and rehabilitation services. Each of the seven ORHS hospitals in Orange, Osceola, Seminole, and Lake Counties provides a full spectrum of the finest in cardiovascular services.

Warning Signs of a Heart Attack The most common symptoms of a heart attack are: • Chest discomfort that feels like heaviness, pressure or tightness • Discomfort radiating to neck, jaw or arms • Shortness of breath • Cold, pale or sweaty skin • Nausea with or without vomiting • Palpitations or dizziness

If you experience these symptoms call 911 immediately! For more information on cardiology services at ORHS call the HealthLine at 407/648-7899.

ORHS logo

by Karen Collins, M.S., R.D. There’s lots of advice around to eat five Q: servings of fruits and vegetables

A new international report A: on cancer prevention from American Institute for Cancer

a day. Will doing that really help protect against cancer?

Research found that staying physically active helps protect against colon cancer, and possibly rectal cancer and breast cancer. Studies repeatedly find regular physical activity vital for reaching and maintaining a healthy weight, which is linked with a lower risk of uterine cancer, and possibly cancer of the kidney and the breast in women after menopause. Regular physical activity also protects against heart disease, boosts energy levels and may help stabilize moods. If your physical activity at work is at a low or moderate level, all it takes is one hour a week of vigorous exercise and just one hour a day of moderate activity (a brisk walk, bicycling, or gardening) to reap many of its benefits. While this represents a change from the couch potato lifestyle many of us hold, it is not an unreasonable goal for something that carries with it so many rewards.

The new report, Food, Nutrition and the PreA: vention of Cancer: A Global Perspective, an international study on diet and cancer by the American Institute for Cancer Research and the World Cancer Research Fund, estimates that if people began eating five servings of vegetables and fruits each day, we could reduce overall cancer rates by 20 percent. In the U.S., that could mean 250,000 fewer cases of cancer each year. Specific cancers that would be especially affected include cancers of the mouth, lung, stomach, colon, rectum and throat, and probably cancers of the breast, cervix, and pancreas. While a variety of substances in fruits and vegetables have been identified in laboratory studies as possible cancer inhibitors, the new report emphasizes that these substances should be consumed in foods, not supplements, since it is not clear which substances and in what forms provide the desired protection. Cancer protection may come from the dietary fiber, carotenoids, vitamin C, folic acid, natural plant “phytochemicals,” or other substances. I’ve seen recent reports that say exercise can reduce cancer risk. Is that true?

Q: Orlando Regional Healthcare System is a corporate member of the Elder Floridians Foundation, which partially underwrites Elder Update.

“Nutrition-Wise” is provided as a public service by the American Institute for Cancer Research (AICR). Questions for this column may be sent to “Nutrition-Wise,” 1759 R Street, N.W., Washington, D.C. 20009. Ms. Collins does not respond to questions personally. AICR also operates a toll-free hotline that offers advice about nutrition and health. The number is 800/843-8114; it operates weekdays from 9 a.m.-5 p.m. Eastern time.

FLORIDA’S HIDDEN EPIDEMIC Alzheimer’s disease presents massive challenge to state By Carrie Morgan /Elder Update correspondent

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rom its discovery in 1906 by German physician Alois Alzheimer to today’s fast-paced Information Age, the disease that erases memory remains an enigma. Starting with minor symptoms, Alzheimer’s disease strikes hundreds of thousands of Floridians, gradually stealing memory, changing personality and causing an irreversible decline in thinking ability. On average, a person with Alzheimer’s disease lives from four to eight years after diagnosis, but can live as long as 20 years or more with the illness.

There is, however, no such thing as an “average” person with Alzheimer’s disease. While some symptoms are common, no one can predict exactly how the disease will affect its victims. “Alzheimer’s disease is Florida’s hidden epidemic,” said E. Bentley Lipscomb, secretary for the Florida Department of Elder Affairs. “Today, an estimated 370,000 Floridians have Alzheimer’s disease or a related dementia — and that number is projected to jump to 500,000 by 2001.” The memory loss that is symptomatic of Alzheimer’s disease is a result of the death of brain cells and

the breakdown of the connection between them. To date, the causes are unknown. In recent years, there have been several findings related to new treatments for the disease, but there is still no cure. Alzheimer’s disease primarily affects adults age 65 and over, but it can strike people in their 40s and 50s. Prevalence rises dramatically with age. Some studies say the disease affects about 3 percent of people age 65 to 74, about 19 percent of people age 75 to 84, and from 33 to 47 percent of people over age 85. While there is no known cure, some treatment is now available.

Families bear the brunt of this disease. More than 70 percent of the people suffering from Alzheimer’s live in their own homes, cared for by family members. These caregivers face the challenge of not only caring for their loved one but also themselves. This special Elder Update edition is the second in a series on diseases prevalent among the elderly and is dedicated to the thousands of Floridians who make constant sacrifices to care for others. These caregivers are true heroes. We hope this special edition helps, in some small way, to make their caregiving easier.

How Alzheimer’s affects the brain By Leilani Doty, Ph.D Special to Elder Update hile researchers still search for a cure for Alzheimer’s disease, they have W begun to understand the way the disease

How

affects the brain. Brain What researchers do know is this: Alzheimer’s disease causes physical Cells changes to brain cells (neurons) that make it Work harder for messages to be formed or sent from one brain cell to the next. The brain has hundreds of neurons, any one of Major Functions which can have thousands of connections with other neurons. Chemical messengers called neurotransmitters of Left Side Cortex travel along their branches, linking each neuron with many others in a vast communications network. in the neurons that are responsible for memory. Expressing words becomes Neurotransmitters are released from the axon, cross the synapse, and difficult when there are changes in the neurons and neurotransmitters which are caught by receptors on the surface of the next neuron, or along its long, are responsible for forming words. thin dendrites. Decision-making becomes difficult due to changes in the neurons responsiChanges that occur with Alzheimer’s disease include: ble for decision-making and judgment, like choosing an item on a menu. Each 1. Cell body weakens and dies. affected person has individual differences because of variations in neuron loss. 2. Axons weaken, die, and tangle. In Alzheimer’s disease, memory, language and other thinking functions 3. Dendrites weaken and die. typically decline early in the disease process because of changes in neurons 4. Storage sites for nerve messenger chemical weaken and die. throughout the cortex — the “thinking” part of the brain. 5. “Road blocks” of amyloid deposits develop. (Leilani Doty, Ph.D. is the administrator for the University of Florida Memory loss occurs when there are problems producing neurotransmitters Memory Disorder Clinic.)

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Respite highlights Elder Affairs programs for Alzheimer’s By Carrie Morgan/Elder Update correspondent n no other way is the Department of Elder Affairs’ mission to help Ielders remain in their homes more apparent than in the way it helps individuals with Alzheimer’s disease, their family members and their caregivers. Because the needs of persons with dementia and their caregivers change over time, the variety of services funded through the Department’s programs are geared toward adapting to those changes. For example, those experiencing memory loss may seek the services of one of Florida’s nine memory disorder clinics. There they receive comprehensive assessment, diagnosis and care management suggestions, as well as community referrals. Memory disorder clinics also provide training for health professionals, family caregivers and the public on Alzheimer’s disease and other forms of dementia. Each clinic conducts research related to Alzheimer’s disease and care management possibilities. Some memory disorder clinics conduct caregiver support groups, considered crucial for caregivers to relate their experiences. Because of the dire need for caregiver respite — a period of

Acknowledgments We would like to express our sincere gratitude to all those who helped in the publication of this special section: Co-editors Barbara Doran and David Lee Simmons; staff writers Dave Bruns, Tom McMullen, D’vorah Mitchell, Kelly Silva and Cindy Snowden; and Dr. Fiona Crawford, Leilani Doty, Ph.D., Ira Goodman, M.D., Tom McGough and Carol Waters for their expertise. Special thanks to Elder Affairs special projects coordinator Carrie Morgan for her writing, editing and expertise, and the Elder Floridians Foundation, Inc. for its continuing support. And finally, many thanks to Eisai, Inc. for its generous support of this section.

relief from constant care — the Department offers respite services in all 67 counties in Florida through the Alzheimer’s Disease Initiative. Funding from the program has more than doubled since the Department was founded in 1992 to the current level of $9.3 million. Despite this impressive increase, Florida is still only assisting approximately 1 percent of the estimated 370,000 Floridians suffering from Alzheimer’s. Under the program, a respite worker may come to the home to allow the caregiver some time away, or the person with Alzheimer’s disease may go to a respite facility where meals and socialization are offered. Evening and weekend respite, as well as extended periods of facility-based respite, are available in some areas. Many individuals with Alzheimer’s disease benefit from socialization and interaction at adult day care programs. Model day-care services are designed specifically to meet the needs of individuals with Alzheimer’s disease or related disorders. Model day care provides a safe environment where patients congregate for the day and socialize with other participants, and receive therapeutic interventions designed to maintain or improve their daily functioning. There are model day care programs in Alachua, Dade, and Hillsborough counties. The Department of Elder Affairs offers respite services to low-income minorities affected by Alzheimer’s disease through the FAVOR (Florida Alzheimer’s Volunteers Offering Respite) program. FAVOR services include respite, adult day care, transportation, medical screening and diagnosis, education, and outreach. Financial assistance is available for caregivers of persons with Alzheimer’s. The Home Care for the Elderly program provides finan-

cial assistance to low-income families in which an elder is being cared for by a family member or friend who lives in the same household. In this program, subsidies are provided for support and maintenance of the elder in the home and for additional supplies or services which are needed as part of the direct care. Many families desire a definitive diagnosis of Alzheimer’s disease, which can only be confirmed by autopsy of brain tissue. The State of Florida Brain Bank at Mt. Sinai Medical Center in Miami Beach provides autopsy services. Brain Bank donors provide valuable brain tissue for scientists to conduct research into the causes of Alzheimer’s disease. To become enrolled in the Brain

Bank program, contact the memory disorder clinic nearest you. The Department continues to expand the services offered and explore new ways to meet the needs of Floridians affected by Alzheimer’s disease. For more information on resources, please see the article on Pages 10-11 of this issue. To help the Department meet these needs, the Governor’s office has recommended a $3.8-million increase for respite services. The Governor’s budget also recommends funding for a ninth memory disorder clinic, at the Orlando Regional Healthcare System. The budget also recommends a $1.3 million increase for the Respite for Elders Living in Everyday Families (RELIEF) program.

How do you know if it’s Alzheimer’s disease? By Barbara Doran /Special to Elder Update today’s hurried world, everyone forgets things. It’s normal. But InAlzheimer’s Disease is not a normal part of aging. Normal memory loss is mild, memory can be easily jogged and problems don’t worsen over time. In Alzheimer’s disease and other forms of dementia, memory problems develop gradually and worsen with time. It is crucial to not only look for the warning signs, but also seek diagnosis and treatment as early as possible.

How do you know if it’s Alzheimer’s? Only an autopsy after death can prove someone had Alzheimer’s. However, nine Florida memory disorder clinics screen individuals with memory loss. Evaluation includes giving physical exams, getting a personal history from the person with the memory problem and the family and giving memory and psychological tests. If a loved one is having memory loss, get an evaluation — it’s critical. Some problems mimic Alzheimer’s disease but can be successfully treated or even reversed: depression, alcoholism, drug reactions and nutritional deficiencies.

Who is at risk? Older people are more at risk than younger people. But currently, no single test can predict Alzheimer’s. Continued on next page

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MINOR BATTLES, MAJOR WAR Alzheimer’s research targets small and big picture By David Lee Simmons /Elder Update editor very month, it seems, another study is concluded, another Ediscovery unearthed, another research team encouraged. And so the marathon to find a cure for Alzheimer’s disease proceeds, with research teams competing against time and one another to become the first. The race is an admittedly frustrating one because of the complicated and elusive nature of the disease. The optimism following recent discoveries is undeniable, though it’s probably hard for the caregiver on the front lines to celebrate. After all, while a scientist slaves away researching a genetic link, a caregiver slaves away dealing with a patient’s incontinence. It’s a sobering contrast, but illustrative of how the battle is fought on so many different levels. There is, though, reason for hope,

“If we can delay Alzheimer’s by ten years, that in itself will be wonderful.” — Leilani Doty, Ph.D., administrator, University of Florida Memory Disorder Clinic. particularly after a decade’s worth of tremendous advances. “One of the things we want people to know is that this is the decade of the brain,” said Carol Waters, the executive director and CEO of the East Central Florida Memory Disorder Clinic in Melbourne.“The United States focused on the brain as the research frontier. We have learned more about the human brain in the last seven years than in all of history preceding that.” Florida’s memory disorder clinics

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At what age does it occur? Early-onset occurs at ages younger than 65 years and late-onset occurs at age 65 years and older. Early-onset is rare and generally affects people aged 30 to 60. It progresses faster than the more common late-onset forms.

What are some of the signs of Alzheimer’s? Ten common symptoms are:

1. Memory loss that affects regular performance 2. 3. 4. 5. 6. 7. 8. 9. 10.

in one’s daily routine, such as job skills or household duties. Difficulty performing familiar multi-step tasks. Problems with language. Disorientation of time and place. Poor or decreased judgment. Problems with abstract thinking. Misplacing things. Changes in mood or behavior. Changes in personality. Loss of initiative.

See your doctor when you observe any changes such as the ten warning signs listed above.

are at the forefront of Alzheimer’s research, conducting research to further explore causes and treatments for the disease. The clinics also conduct service-related research to discover optimal methods of care for individuals with Alzheimer’s and their caregivers. Some of the current research includes work on: clinical drug trials to test the value of certain medications; the potential link between ethnicity and the disease; caregiver burden; and the loss of motor skills.

How does Alzheimer’s develop? There are three basic stages in the development of Alzheimer’s disease. In Stage One, or the early stage, the person may or may not be aware of any difficulties. Lists and other reminders, as well as setting up routines, can help their changing ability to remember. Often the person and caregiver do not realize there is a health problem at this point. They may feel that fatigue, extra stress, fickleness, stubbornness or laziness are causing the problems. In Stage Two, or the middle stage, it becomes obvious that “something is wrong” and that a medical evaluation is necessary. Sometimes the person with Alzheimer’s disease may be unaware of the decline. In Stage Three, simple, reflex actions change. The person startles easily at sudden, loud noises; grasps onto objects or people and does not let go, especially during a handshake; and may suck on objects. A person with Stage Three Alzheimer’s is totally dependent on the caregiver. The caregiver provides constant supervision and assistance with all activities of daily living: toileting, dressing, bathing, eating, and moving around. Caregivers absolutely must have regular respite during this stage.

Meanwhile, researchers such as Dr. Fiona Crawford, a molecular geneticist working with a team at the University of South Florida, chip away at finding the starting point of the disease to solve the mystery. Over the course of their research, Crawford, said, “It became clear that Alzheimer’s disease had a number of different starting points, as opposed to cystic fibrosis, where there’s only one gene. Alzheimer’s is much more complicated than that.” Recent genetic research has led to impressive discoveries such as the potential link between the APOE-e4 gene to the risk of Alzheimer’s disease. Researchers in Oregon in a report last August found that, with some qualifiers, those with the HLA-A2 gene were diagnosed with the disease at an average of three years earlier than those who did not have the gene. Other research has studied the possible benefits of everything from anti-inflammatory drugs (NSAIDs), selegeline, vitamin E and estrogen replacement therapy (ERT) to the Chinese herb ginkgo biloba. Two drugs — Aricept and Cognex — have been approved by the Food and Drug Administration to help treat some mild to moderate symptoms of Alzheimer’s. Instead of becoming obsessed with a cure, some say, it’s perhaps more important to appreciate the need to slow the progression of the disease. “Every year of health that we buy is a year of better functioning, higher quality of life, more cost savings to a family and to society,” said Leilani Doty, Ph.D., administrator of the University of Florida’s Memory Disorder Clinic. “If we can delay Alzheimer’s by ten years, that in itself will be wonderful, in terms of the productivity of people, their quality of life, and the reduction of patient and family stress. “That should be our focus, instead of feeling despair that we have not yet found a cure.”

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Answering major questions about Alzheimer’s By David Lee Simmons /Elder Update editor

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n an effort to cover the wide spectrum of issues that are discussed regarding Alzheimer’s disease, we asked three experts to address key questions they receive in their respective fields.

• Carol Waters, a clinician, executive director and CEO of the East Central Florida Memory Disorder Clinic in Melbourne.

Q: What can be done to curb “wandering” with a loved one? A: The first step is always to get an ID bracelet, which is available through memory disorder clinics and the Alzheimer’s Association, among others. Also make sure you have a current photograph of the individual. Look for security equipment for the home, such as buzzers that go off when the door opens. Childproof covers for door handles are also helpful. Sometimes wandering can be controlled by taking people on walks. Walking and other exercise are just as good and necessary for the caregiver as the person with Alzheimer’s. It’s good for preventing depression, and maintaining proper blood pressure.

Q: How do you handle a spouse who insists on keeping a copy of the car keys? A: You need to make somebody else the bad guy — perhaps even your physician if possible. Ask the physician to make a ruling for you, and if the doctor says no, you just remind your spouse that the doctor says no.

A number of automobile dealerships will install a secondary switch for the ignition to the car. If you don’t need the car, have someone take it away and tell your spouse the car is being repaired.

Q: How helpful is exercise for people with Alzheimer’s? A: It’s fantastic. You need to pump that blood and keep that blood moving, because it takes nutrients and oxygen to the brain, it helps dispel depression. It promotes a good appetite. And exercise during the day will help promote sound sleep at night.

• Ira J. Goodman, M.D., neurologist, principal investigator and director of the Orlando Regional Healthcare System’s (ORHS) Memory Disorder Clinic. He is also the director of neurology at ORHS.

Q: How helpful is vitamin therapy? A: We’re not sure. There’s evidence that high doses of vitamin E might be beneficial, but there are a lot of vitamin fads. In some instances, people can tend to bleed when taking heavy doses of vitamin E. No one should go on medication without first discussing it with their physician.

Q: How can someone who wants to volunteer for new research or clinical drug trials get involved? A: The best way is to contact a participating neurologist or a

memory disorder clinic in your area.

Q: Are antidepressant medications helpful for Alzheimer’s patients? A: Yes. There have been some reports that show that antidepressants may help behavior in some people. They help even if you’re having trouble with cognitive (thinking) functions, because difficulty with thinking can cause depression, and being depressed can have a negative impact on your cognitive function.

• Tom McGough, executive director of the Alzheimer Resource Center of Tallahassee, Inc.:

Q: How do you deal with a loved one who seems especially confused in the early evening? A: It’s called Sundowner’s Syndrome, which is fairly common. If people become more confused in the evening, you want to tailor their activities to a level that’s appropriate for that person, such as doing more complicated tasks in the morning and simpler tasks in the evening. Confusion can be brought on by darkness and shadows. Keep rooms well-lit during this time of day.

Q: How do you reassure one spouse who has become very accusatory and thinks the other spouse is having an affair? A: Never argue. The situation is real to the person with Alzheimer’s. Try distractions. Change the subject. Leave them

alone for a few minutes, and use the person’s poor short-term memory to give them a chance to calm down. Go on to another topic when you return.

Q: How do caregivers cope with the sense of loss?

A: It’s important for the caregiver to reach out to other people, and the earlier in the illness the better. Support groups, and others who are going through this, can be very helpful. Too often, the illness continues, support drops off, and the caregiver becomes isolated, burned out, and clinically depressed. Take breaks and get respite. One study found that if caregivers don’t get respite and support, they become clinically depressed within two years.

Q: How do you deal with weight loss? A: Dieticians and doctors say that appetite loss is a natural part of the process. If they don’t have any other diet restrictions, give them foods that can provide some fat: milkshakes, ice cream, cheese sauces on vegetables, frequent snacks. Snacks all day help keep the weight up. It’s very important to push a lot of liquids, such as 6-8 glasses of water or juice a day. Sometimes, they also need encouraging or prompting.

Q: How can children help parents who are caregivers to a spouse? A: Get involved. Don’t just say, “If you need something, holler.” Be assertive: “Mom, what if I came by and sat with Dad while you ran some errands?” Really get in there to relieve and help.

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Early planning key for families dealing with Alzheimer’s By Barbara Doran /Special to Elder Update egal and financial affairs can Lcomes become difficult as a family to terms with Alzheimer’s disease. It is important to face the fact that someone will need to assume management of these responsibilities and act soon after diagnosis, while the affected individual can still make legal decisions and still know where his or her assets are. Families should consider using an attorney trained in elder law to assist in organizing legal and financial matters. What types of legal and financial issues should be addressed? Some are listed below.

Legal matters/ advanced directives Durable power of attorney: This is a directive which gives broad power over the affected individual’s life, for example, to move a person from their home, use their assets or sell their property. A durable power of attorney is an easy way and inexpensive way to transfer legal and financial authority from one person to another trusted family member or friend. This is a private transaction and does not include court supervision or oversight, although an attorney may be needed to assist with drafting. The power is valid until a court adjudicates a person incapacitated. A living will: This outlines, in advance, information about end-oflife medical treatment. The affected person can indicate his preference on decisions such as whether he wishes to have antibiotics, hydration, tube feeding or respirators to sustain his life. Guardianship: This is a court decision that an individual lacks capacity in certain areas and another individual or family member is designated to assume responsibility. In this case, the

court outlines what the powers of the guardian are and what reporting is required by the court. With court supervision there is less opportunity for financial and legal abuse than with the durable power of attorney, but it can be much more expensive to establish. Tax and estate issues: Guidance should be sought from an attorney or certified public accountant (CPA) on these issues.

Family Business Social Security: Decisions need to be made about where the check is sent, whether the representative payee should be changed, and if the individual is under the age of 65, whether he or she is eligible for Social Security disability. Health insurance: The individual who is in charge should have information regarding medical insurance and Medicare, Medicaid, long-term care insurance and nursing home placement. As the disease progresses there will be greater need for these resources.

Changing independent lifestyle Two difficult decisions concern retiring from work, and giving up driving. As the person becomes increasingly confused or disoriented, the ability to function adequately at work becomes compromised, eventually leading to retirement. Retirement with a disability can be complicated and financially difficult. An attorney can be helpful in sorting through the procedures and paperwork. The loss of a job can also be depressing and counseling should be sought, if needed. Deciding when to stop driving is another difficult decision because the individual may not wish to give up this privilege. But, continuing to drive puts both the affected person and others on the road at risk. Many times physicians

can counsel the individual, and prescribe that they stop driving. It may become necessary to take away the car keys, disable the car, or even sell the car.

Paying for long-term care The cost of nursing homes and ALFs ranges from expensive to exorbitant — ranging from $25,000 to $50,000 a year. Paying for long-term care requires planning, creativity and ingenuity. It may precipitate conflict and resentments among family members. That’s why you should start planning for it early — ideally, shortly after your loved one is diagnosed. Payment options include: • Self-financing. Affected individuals may have enough financial assets to pay for their long-term care. Of course, the person’s assets may be tied up in a home and in various investments and insurance policies. You may have to do some detective work to locate them all. • Life insurance. You may be able to use the person’s life insurance policy to raise cash. Contact the Alzheimer’s Association or an insurance broker for more information. • Reverse Mortgage. Reverse mortgages allow people age 62 or older to convert their home equity into monthly income that can be used to cover care-giving costs. Reverse mortgages are available through many banks, the Federal Housing Administration (FHA), and the Federal National Mortgage Administration (Fannie Mae). For more information, contact your bank, or consult the U.S. Government listings in your phone book for FHA or Fannie Mae. • Long-Term Care Insurance. Some consumer groups complain that long-term care insurance policies rarely pay out as purchasers hope. Shop very carefully, read the

fine print, and talk with several brokers before you buy. • VA benefits. If the person is an armed services veteran, placement in a Veterans Administration facility might be possible. For information, contact the Veterans Administration or the Alzheimer’s Association. • Family. Family members might decide to pool their resources and pay for nursing home care. • Medicare. Medicare pays for up to 150 days of nursing home care in cases of serious illness in those who need intensive rehabilitation. Alzheimer’s disease does not qualify because currently there is no possibility of rehabilitation. However, if a person with Alzheimer’s also has some other condition, like a stroke, Medicare financing may be possible for a time. For more information, contact a Medicare office, social worker, the person’s physician, or the Alzheimer’s Association. • Medicaid. Medicaid is a federal safety-net program administered by the states. It pays for health care, including long-term nursing home care, for those who have no other financial resources. For more information on Medicaid, contact the nursing home you’re considering, or ask to speak to a SHINE (Serving Health Insurance Needs of Elders) counselor at the Department of Elder Affairs. Alzheimer’s is a disease of losses. You lose the person you know and love as they grow unable to recognize you and the events that have formed the fabric of his life. They lose their independence and self-reliance. These losses are inevitable. Planning makes it somewhat easier and less complicated. It pays to address these issues early, frankly and with long-term benefit in mind.

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THE LONG GOODBYE recent death of my Family Themother-in-law, Bea Doran, ended five years of Alzheimer’s caregiving caregivers for our family. While people say we were face wide some saints for caring for her in home, we know we range of our aren’t a family of saints much as we were two challenges soamong hundreds of thou-

By Barbara Doran Special to Elder Update

sands of others who care for family members with Alzheimer’s. As a family, we loved Bea and Glen Doran, above; Bea at right her and felt blessed that circ*mstances allowed us Initially Pat cared for Jack at to care for her. We learned the home. As the years passed Pat entire spectrum of caregiving that a began to start each day facing the family provides for a person with mess from the night before that Alzheimer’s, from the challenges Jack would continually cause in his of early stages all the way to what room, the closet and the bathroom. inevitably is a long goodbye. Eventually the emotional exhausThe same could be said for tion she suffered forced her to seek others who touched our lives, institutional care for Jack. like Pat and Jack Jimison and When she reached the point of Marion and Joe McGlasson. Our burnout, her children successfully collective stories are filled with encouraged her to seek help. The diagnosis and denial, despair lesson learned: “Do it before your and optimism, love and loss, own health gets bad,” she said. frustration and hope, exhaustion Through Pat, I met Marion and renewed energy, life and McGlasson, whose husband, Joe, death and, finally, life after death. began suffering from memory loss About four years ago, my after heart bypass surgery in 1980 husband, Glen, and I made the at the age of 60. Marion retired in decision to move his mother, 1987 to take care of him. Bea, from Texas into our home. Marion faced terrible times Shortly afterward, I heard Pat during the ten years she cared for Jimison speak about the 13 Joe at home before his institutionyears of the care she had been alization. She couldn’t close doors, providing her husband, Jack, who even to go to the bathroom, was diagnosed with early onset of because he had to be able to see Alzheimer’s at age 54. her. He was very suspicious. She Pat said at first Jack understood had to cover or remove mirrors the disease and what was happenbecause he was confused by his ing to him. Turning his disease into own image, which he thought a mission, he helped Pat establish was an intruder. the Alzheimer’s Resource Center in When Marion also reached Winter Park. Jack had experience the point where she could no with the situation since his father longer handle Joe by herself, she had suffered from Alzheimer’s for searched for an appropriate setting 15 years, six of which were in a for him. Joe couldn’t get care in a nursing home. Jack’s disease veteran’s facility, and his episodes followed the same course, only of aggressive behavior and escape longer in its duration.

risk caused regular nursing homes to reject him. Nursing homes with locked units had no available space for him. Ultimately Joe was placed in a geriatric facility that also served psychiatric patients. He was the frequent victim of injury since he was incapable of recognizing danger and didn’t know how to avoid it. He frequently banged his head against the wall, which Marion believes was a response to his increasing frustration about his confused thought processes. He was treated unsuccessfully with anti-psychotic drugs. Eventually the behavior stopped on its own when his brain deterioration worsened and his awareness level dropped. Joe remained there two and a half years before his death. Marion warns against placing mental patients with Alzheimer’s patients, citing neglect as a big reason. There was, however, one sweet lasting memory. Because Joe had been a great dancer, Marion

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taped some music and played it for him. “He was so demented he didn’t know who I was, or who he was,” Marion recalled. “He wore a diaper, had to be fed, but he could still walk. I put on the music and saw his toe moving. I started singing.” He called out the name of the Simon & Garfunkel tune, “Cecilia.” Marion asked him, “Would you like to dance, handsome?” He stood up and held out his arms and they danced. Joe never missed a step. Marion quotes the French author Madame de Stael who said, “We understand death for the first time when he puts his hand upon one we love.” Marion believes the same is true for Alzheimer’s — we understand it for the first time when it happens to one we love. Though women are predominantly the caregivers, men also provide care. In our case Glen, Bea’s son, was her primary caregiver, and he learned much along the way. “If you are looking for a happy ending, it is hard to find,” Glen said. “You have to look for little things — what you read into a glance, or unexpected things.” Like the day our family was playing dominoes and Bea knew exactly how to play the game, even if she

Pat and Jack Jimison

didn’t know who we were or where Currently, Pat faces the she was. It was like being in touch challenge of dealing with a living with the old Bea that we knew will. Every day Pat must make sure before. that no interventions occur which One day, after we placed Bea prolong or extend life. When Jack into adult day care, a nurse saw stopped eating last November, Pat Bea and asked us if she had Alzheimer’s. “I could just about tell by the way she looks, bless her heart,” the nurse said. “My aunt had Alzheimer’s and it took four families to care for her!” It reminded me of the phrase, “It takes a community to raise a child,” which definitely holds true for Alzheimer’s. Marion and Joe McGlasson We soon realized that it takes good neighbors, churches and synagogues and her children agreed to honor which extend their ministry into the living will. the community through volunteer When Jack started eating again and adult day care programs. And after the nursing home provided it takes charitable groups such as appetite enhancers, Pat stopped the Easter Seal and United Way and practice in late December — and Alzheimer’s groups such as the Jack is still eating on his own Alzheimer’s Association and other today. He is in late stages of the Alzheimer’s community resources. disease, unable to communicate or Because the disease’s impact recognize anyone. changes with each stage, people “There is so little left of him,” need different types of support Pat said. “What are the ethical to adapt. “If you have a terminal and moral implications of life decidisease, you want to know how sions for people with Alzheimer’s long you have to live,” and where do you go for help or Marion McGlasson pointadvice?” ed out. “But you can’t do During the last two weeks of that with Alzheimer’s.” Bea’s life, we asked the same quesOr, as Pat Jimison tion. I called Bea’s HMO to see if said, “In the early stages they offered legal or family counyou are adjusting to the seling to help us deal with a living idea that there’ll be no will. The HMO encouraged the use vacations, you’ll have to of living wills, but didn’t provide learn to write checks, and the necessary support. pay bills. The support The questions swirled: “To needed at that stage isn’t what extent should we go to ‘force’ the same as what is needed food and liquid when Bea clearly at the later stages.” would not take it on her own?” Emotions also change, “How could we watch her literally providing a cross between starve or dehydrate to death as we a roller coaster ride and a cared for her in our home?” Even downward spiral. though we knew that she had “At different times I longed for death for several years, have thought, ‘This is as we felt that somehow we would be bad as it is going to get,’” giving less than the best care if we Pat says. When I heard didn’t sustain life. this, I asked myself, “Did I We found ourselves facing really say that a year ago?” two philosophies of life and death.

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First, there is the medical model which uses surgery, medication, and intervention to preserve and extend life. But there is also the acceptable alternative of hospice, which accepts death as a natural outcome of life and allows nature to take its course. Fortunately, Bea passed away before we had to face a series of decisions and declining health. For that we are blessed. Pat deals with a different challenge as she adjusts to Jack living in a nursing home. “I don’t know if I love him more than ever before, or just feel sorry for him,” she said. “I look at him and my heart breaks. It’s a different kind of pain now — a long goodbye. With Alzheimer’s you are always losing them.” While Pat is still caregiving and working to establish the state’s ninth memory disorder clinic in Orlando, Marion and Glen and I have moved into the next stage of the disease: life after death. Marion says as a widow she sometimes feels like a fifth wheel, but her days are full as she actively serves on statewide groups to speak for those who are victims of violence, neglect and abuse. She also volunteers her talents with music therapy in assisted living communities. In her personal life, she enjoys birding and a rigorous walking regime. Our experience is so recent, we are still sorting through Bea’s things. We come across a picture or hear a familiar phrase and we stop and give in to a little sadness. We’re still finding our way as we respond to someone who hasn’t heard of her death asks about her. There is no easy way out of this disease — as Glen said, you have to notice the little things like Joe’s toe tapping and the last dance steps, a dominos game and the glimpse of a smile. For more on caregiving, consider these two critically acclaimed books: The Alzheimer’s Sourcebook for Caregivers by Fiona Gray Davidson (Lowell House, $23.95) and The 36-Hour Day by N. Mace (Warner, $6.50).

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If life expectancy is less than six months, hospice can help D’vorah Mitchell and Cindy Snowden /Elder Update correspondents lzheimer’s disease is a terminal A diagnosis. For families and friends, it is a long journey that eventually ends in the death of a loved one. Hospice can provide comfort to both the Alzheimer’s patient and the patient’s family. It’s a unique way of caring for terminally ill patients and their families. The care team includes a nurse, social worker, physician, chaplain and one or more volunteers. The primary focus is making the patient as comfortable and pain-free as possible. There’s no question that the services provided by hospice can be beneficial to Alzheimer’s victims and their families. But physicians face a challenge in referring patients with Alzheimer’s disease for hospice care.

The difficulty is in determining the life expectancy of the Alzheimer’s patient. Federal regulations require a terminally ill patient to have a life expectancy of six months or less to be eligible for hospice care. But individuals with Alzheimer’s disease can live as long as 20 years after the initial diagnosis. In the absence of another terminal illness such as cancer, it’s difficult to know when the Alzheimer’s patient is living his or her last six months. Possible indications of impending death for the terminally ill Alzheimer’s patient include a limited vocabulary of about a half-dozen words, inability to sit up, inability to smile, difficulty swallowing and the presence of

other medical conditions such as aspiration pneumonia. Despite the difficulty in determining when an Alzheimer’s patient has six months or less to live, the services provided by hospice can be invaluable to the patient and the patient’s family. Benefits of hospice care include: • Preparedness for dying: The hospice care team can teach family members about the signs and symptoms of approaching death and can help them cope with anticipatory grief and anxiety. • Pain reduction: Hospice medical personnel are experts at pain and symptom management for the terminal patient. • Choice of surroundings: Most hospice patients are cared for in their own homes, depending upon

Research Committed To Making Memory Lane Last a Little Longer

the needs of the patient and the wishes of the patient and the family. Hospice care is also provided in nursing homes. • Respite services: Hospice volunteers are available to help the primary caregiver by providing brief respite care, running errands, or performing other light chores. • Ongoing bereavement support: Hospice provides bereavement support and counseling to the family for a year after the patient dies. • Hospice services are available to anyone, regardless of ability to pay. For more information call Florida Hospices, Inc., at 850/222-4239 or the National Hospice Organization toll-free at 1-800/658-8898.

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Assistive living devices enhance everyday routine By Dave Bruns /Elder Update correspondent

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amilies coping with Alzheimer’s disease rarely can be considered fortunate, but those living near facilities built especially for Alzheimer’s sufferers may be luckier than most. Some facilities feature helpful aids, from patient-prompting “memory boxes” outside their rooms to the circular interior “brick sidewalks” that lead patients gently around a skylight. However, even if you’ve made the choice to care for your loved one at home, your family can benefit by using tools developed by Alzheimer’s researchers.

Helpful assistive devices include photos on doors, “memory boxes” (above) and winding sidewalks to allow for “wandering” (right).

Many modifications are inexpensive. If you’re a do-ityourselfer, you can make some modifications yourself. Even hiring a professional may be less expensive than moving a person with Alzheimer’s disease to a full-time care program. Several modifications can help the person with Alzheimer’s deal with loss of memory. They use cues to remind him or her of appropriate behavior: • A hallway memory (or “curio”) box securely covered with Plexiglass or other clear plastic can include items that

reflect a room’s function — a miniature pillow and blanket outside a bedroom, a roll of toilet paper and toothbrush outside a bathroom, or a plate and flatware outside the kitchen. The memory box can also be used to help patients identify their own rooms by the use of personal items. • Make things visible. Consider replacing a bathroom door with a curtain that can be easily drawn back, allowing a person to see the toilet. People with Alzheimer’s disease often suffer from incontinence because they can’t remember

where the bathroom is once the urge becomes pressing. • At night, use light to accent desired features. For example, accent bathrooms by leaving lights on. • People with Alzheimer’s disease can lose their place in a family’s regular meal routine. Opening kitchen doors and using small fans to circulate cooking aromas can help remind them that it is time to eat. • Make light switches more noticeable by painting the plastic shields around them with a color that contrasts with the wall covering. • Closet clothes rods mounted perpendicular to the wall allow you to hang a day’s clothing in the order in which it is put on — an aid to loved ones whose sequencing abilities are failing. • Cover or remove mirrors and other highly reflective surfaces such as metal pans or waxed furniture to avoid distress. Patients may not recognize their faces in the reflection. • An enclosed garden with open weave or mesh walls at least five feet in height can allow an Alzheimer’s patient to wander in and out of a house freely — so it won’t be as necessary to constantly say “No!” • Circular walkways allow freedom of movement for the person without added confusion and the stress of having to change directions. • If the person is a “wanderer,” often covering the door with a curtain will help. If the person does not see the door, it might be “out of sight, out of mind.” (Elder Update correspondent Sylvia Peaco*ck contributed to this article.)

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WHERE TO GO FOR HELP Resources offer wide range of assistance By Kelly Silva /Elder Update correspondent

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s Alzheimer’s disease becomes more visible, a greater number of organizations and programs arise to assist those in need. Here are some of the many organizations that offer assistance to those with Alzheimer’s disease and their families.

ALZHEIMER’S DISEASE INITIATIVE PROGRAM

Run by the Florida Department of Elder Affairs, this program oversees nine memory disorder clinics (MDCs), three model day care centers, a Brain Bank, and respite services in all 67 counties. The MDCs provide diagnostic and supportive services, training for professionals and caregivers, research, and support groups. They are located in various regions of the state. Contact the MDC in your area for more information. The Wien Center Mt. Sinai Medical Center (Miami Beach) 305/674-2543 University of South Florida Memory Disorder Clinic (Tampa) 813/974-3100 University of Florida Department of Neurology (Gainesville) 352/392-3491 East Central Florida Memory Disorder Clinic (Melbourne) 407/768-9575 University of Miami Memory Disorder Clinic (M-801) 305/243-4082 Mayo Clinic Department of Neurology (Jacksonville) 904/953-7103 North Broward Memory Disorder Center (Pompano Beach) 954/786-7392 Senior Health Services West Florida Regional Medical Center (Pensacola) 904/494-4885 Orlando Regional Medical Center Memory Disorder Clinic 407/237-6336

The Model Day Care program provides adult day care, socialization, meals, and supervision

of an Alzheimer’s patient in a protective setting. The programs are committed to discovering and implementing the latest, most innovative methods of caring for those suffering with Alzheimer’s disease. Contact the program in your area for more information. Al’z Place (Gainesville) 352/375-3000 Villa Maria (North Miami Beach) 305/651-0034 Easter Seal Society of Dade County (Miami) 305/325-0470 Adult Day Care Services (Tampa) 813/272-6261

Respite programs are located in all of Florida’s 67 counties. For more information on local respite services, contact the Elder Helpline in your area. The Elder Helpline numbers are published on page 21 of the Elder Update. FAVOR PROGRAM

FAVOR (Florida Alzheimer’s Volunteers Offering Respite), offered by the Department of Elder Affairs, provides volunteer-based respite for low-income minorities with Alzheimer’s disease and their caregivers. Contact the site in your area or your Elder Helpline for more information. Alzheimer’s Community Care Association of Palm Beach and Martin Counties (Pahokee) 561/924-7283 Catholic Charities Diocese of St. Petersburg (Citrus County) 352/686-9897 City of Jacksonville, Adult Services Division 904/630-0966 Christian Service Center (Orlando) 407/423-5311 Hillsborough County Aging Services (Tampa) (813) 272-7108 Little Havana Activities and Nutrition Centers (Miami) 305/858-2610 James E. Scott Community Association (Miami) 305/635-8069

Neighborly Senior Services (Clearwater) 813/573-9444

Alzheimer’s Support Network (Naples) 941/262-8388

Neighborly Senior Services of Manatee (Bradenton) 941/748-3001

Alvin A. Dubin Alzheimer’s Resource Center, Inc. (Fort Myers) 941/437-3007

OTHER DOEA PROGRAMS

Brevard Alzheimer’s Foundation, Inc. (Melbourne) 407/729-8536

Several other programs offer services to the elderly, including those affected by Alzheimer’s disease. The Home Care for the Elderly (HCE), Community Care for the Elderly (CCE), Medicaid Waiver, and Older Americans Act (OAA) programs offer various in-home and community-based services such as adult day care, housekeeping, and respite. For more information on these programs contact the Elder Helpline in your area. The Department of Elder Affairs’ Alzheimer’s Training Manual provides comprehensive information on how to deal with many of the issues covered in this special section, and is available for $15. To obtain an order form to purchase your copy, write to: Carrie Morgan, special projects coordinator, Department of Elder Affairs, 4040 Esplanade Way, Room 260T, Tallahassee, FL 32399-7000. INDEPENDENT ALZHEIMER RESOURCE CENTERS

These centers offer a variety of services including caregiver counseling, training, case management, wanderers’ ID programs, and respite services. They are also an excellent source of local information. Alzheimer’s Community Care Association of Palm Beach and Martin Counties 561/683-2700 Alzheimer Resource Center of Tallahassee, Inc. 850/561-6869 Alzheimer Family Services, Inc. (Pensacola) 850/478-7790 Alzheimer Resource Center, Inc. (Orlando) 407/843-1910 800/330-1910

ALZHEIMER’S ASSOCIATION

The 13 Alzheimer’s Association chapters statewide provide many services to those with Alzheimer’s disease and their families, including respite, day care, support groups, training, wanderers ID programs, and research. To locate the chapter nearest you, contact the main office toll-free at 1-800/272-3900. LONG TERM CARE OMBUDSMAN COUNCILS

The Long Term Care Ombudsman Council (LTCOC) is a federally mandated program responsible for investigating and resolving complaints made by or on behalf of residents of nursing homes, assisted living facilities, and adult family care homes. The program also promotes policies and practices to improve the quality of life, health, safety, and rights of residents. The LTCOC is a good source of information when choosing a residence for loved ones. Please contact the statewide office tollfree at 1-800/511-7023 for more information. AREA AGENCIES ON AGING

The State of Florida is divided into 11 Planning and Service Areas (PSAs), each served by an Area Agency on Aging (AAA). Contact the AAA in your area for information on local aging programs. The numbers are available in each issue of Elder Update, or you can call the Elder Helpline toll-free at 1-800-96ELDER. OTHER STATE RESOURCES

Listed below are other resources helpful to those with Alzheimer’s disease and their families. Continued on next page

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Web offers much for Alzheimer’s caregivers By Tom McMullen /Elder Update correspondent

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here are thousands of Web sites with information regarding Alzheimer’s disease. The list below concentrates on caregiver sites. In some instances a more general address has been given from which caregiver specific sub-sites may be selected:

Alzheimer Caregivers - Directory of Service Sites http://www.mcg.edu/News/ 96features/alzheimer.html Emphasizes the plight of the often neglected caregiver. Offers thoughtful insights into the caregiver’s dilemma. Alzheimer’s.com http://www.alzheimers.com Comprehensive website covering research treatment, caregiver tips and more. Alzheimer’s Companion Magazine http//www.alzheimerscompan ion.com/ A magazine dedicate to providing compassionate information for family, friends and professional caregivers of persons with Alzheimer’s disease. The Alzheimer’s Disease and Related Disorders Association http://www.alz.org Abundant information from the largest national voluntary health organization. An award winning bookmark no caregiver should live without! Http://pw2.netcom.com/~lehdoll/ solidGOLD.html Real answers, coping strategies, techniques, tips, effective methods. Caregiving - Caregiver’s Journal http://www.caregiving.com/jon line/c_main.htm A newsletter to help caregivers.

Caregiving Books http://www.alzheimersbooks.com /103.Caregivingbooks.html Descriptions of books related to caregiving. Offers recommendations. There is an e-mail link for inquiries. Caregiving - Online Support: Resources http://www.caregiving.com/sup port/html/resource.htm Helps to find information and support on the World Wide Web. REACH (Resources for Enhancing Alzheimer’s Caregiver Health) http://www.edc.gsph.pitt.edu/ reach/abstract.html This site was started in 1995 by the National Institutes of Health. Its purpose is “to develop and test new ways to help families manage the daily activities and the stresses of caring for people with Alzheimer’s Disease or a related disorder.” Continued from previous page Adult Financial Assistance Located in the Economic SelfSufficiency office of the Department of Children and Families, this unit determines the financial eligibility for supplemental payments for eligible nursing home, adult family care home, and assisted living facility residents as well as eligibility for the medically needy program. 850/488-3271.

REACH Bibliography http://www.edc.gsph.pitt.edu/ reach/biblio.html A list of references to publications related to REACH (lists invaluable journals, abstracts, and other publications of specific interest to the caregiver). The Caregiver’s Companion: Words to Comfort and Inspire http://www.alzwell.com/ comfort.html Stories from the author’s experience. Contains practical advise and a collection of inspirational poems. Not for everybody, but probably just right for some. Sympatico: HealthyWay Magazine: Help for Caregivers http://www.bc.sympatico.ca/Cont ents/Health/HEALTHYWAY site From this site you have links to more than 8,600 other sites.

also administers the Florida Medicaid program and provides state health care information. Call to obtain a list of Alzheimer’s Day Care Centers in the state of Florida. 1-800/342-0828. Assisted Living Unit - 850/487-2515. Elder Helpline - Florida’s referral system for anyone seeking information or services related to elders. Call the 800 number for the number in your area. 1-800/96ELDER.

Adult Services - This division of the Department of Children and Families is responsible for Protective Services for the Elderly, the Community Care for Disabled Adults, and the Home Care for Disabled Adults programs. 850/488-2881.

SHINE (Serving Health Insurance Needs of Elders) — A program offered through DOEA that provides free Medicare and health insurance counseling and information. 850/414-2000.

Agency for Health Care Administration (AHCA) - This is the state agency responsible for the inspection, regulation, and licensing of health care facilities. The agency

Suncoast Alzheimer’s Information Line - Provides information for Alzheimer’s disease victims and their caregivers. 1-800/633-4563.

10 Easy Ways to Help An Alzheimer Family http://med-amsa.bu.edu/ Alzheimer/10ways.htm This document was created by the Alzheimers Association. Transitions Health Care Services http://www.comnet.ca/~ratrace/ TransitionsLinks.htm Among the listed links is Caregivers Survival Resources. From the remaining links there are scores of related sites (palliative care, hospice, home care, last rites, etc.) This is a useful and informative site. If you would like to explore further, or expand the scope of the offerings on the World Wide Web, please access your favorite search engine and search for “Alzheimer caregiver” or “Alzheimer AND caregiver. Other terms may be similarly added to refocus the terms of your search.

NATIONAL RESOURCES Eldercare Locator - A nationwide directory assistance service designed to help older persons and caregivers locate local support resources for aging Americans. 1-800/677-1116. Alzheimer’s Disease Education & Referral Center P.O. Box 8250 Silver Spring, MD 20907-8250 1-800/438-4380 Alzheimer’s and Related Disorders Association 70 E. Lake St. suite 600 Chicago, IL 60601 1-800/621-0379 Alzheimer’s Family Relief Program 15825 Shady Grove Rd., Suite 140 Rockville, MD 20850 1-800/437-2423 Alzheimer’s Association, Inc. 919 N, Michigan Ave. Chicago, IL 60611-1676 1-800/272-3900

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Dealing with long-term care and placement By Carrie Morgan and Cindy Snowden /Elder Update correspondents

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hen her father was diagnosed with Alzheimer’s disease the same year that her mother died, Melinda Ross put her home up for rent and moved back to the house where she grew up. Melinda and her sister became the primary caregivers for their father and spent a year witnessing his rapid descent into dementia. The 24-hour nursing care their father required depleted his life’s savings at the rate of $8,000 a month. The anniversary of their mother’s death sent their dad on a downward spiral that left them facing one of the most difficult decisions they would ever make: whether to place their father in a nursing home. For most Alzheimer’s caregivers, there comes a time when they simply do not have the facilities, skill, energy, and support to provide round-the-clock supervision and daily activities necessary for people with Alzheimer’s disease. Sometimes caregivers must move the loved one into a nursing home or other appropriate longterm care settings. This is often a wrenching decision. Caregivers struggle with the fear that no one can take care of their loved one as well as they can. While that may be true, a good facility can provide the needed care.

When to start planning: At diagnosis The sooner you begin planning for long-term care, the better off you and your loved one are in the long run. Both you and the affected person should start getting used to planning ahead early on. Talk about your feelings. Talk with other family members, clergy, and people who have dealt with these difficult decisions. Talk with people who have already placed family members in nursing homes or assisted living facilities (ALFs) and provided arrangements for late-stage care. The earlier you begin exploring choices, programs and facilities, the earlier you are likely to find the right

Clare Bridge in Tallahassee is one of many facilities specifically geared toward housing people with dementiarelated illnesses.

choice, the best program, and the nicest facility for your family member. Many issues, such as program activities and cultural sensitivity, should be considered in order to meet the affected individual’s and family needs.

Finding a good long-term care facility When it comes time to consider placement in a residential program such as an assisted living facility (ALF) or nursing home, educate yourself. “Learn as much as you can about the options for placement,” Melinda Ross said. “Empower yourself to make this decision an informed one.” First, find out what types of longterm care facilities are available in your area. Talk to friends, social workers, clergy, local senior citizen organizations, and local Alzheimer’s organizations to develop a helpful information network. Once you have listed possible facilities, call and ask some general questions over the phone, discuss subjects such as openings, any waiting lists, brochures or information packets, costs, available financial arrangements and special features of the facility. Telephone interviewing and what you learn by mail may narrow your list somewhat. The next step is to evaluate potential facilities yourself. Melinda Ross recommends that caregivers visit facilities and talk to the family members of other residents: “They’ll tell you the truth

about the care their loved ones receive.”

How to evaluate a long-term care facility Here are some questions and considerations for evaluating a nursing home or assisted living facility when you visit. • Is it conveniently located? • Is it licensed and accredited? • If your relative has special dietary needs, can he or she be accommodated? Is food available only during mealtimes? Or is snacking possible? • Notice the resident-to-staff ratio. The lower the ratio, such as one staff member to three residents, the better the care (usually.) Pay attention to how staff interact with residents. Ask if staff are trained to deal with people who have progressive memory disorders. • Who develops the care plan? Can you participate? • Check out the daytime program. Do residents watch TV all day? Or does the facility have organized activities? Do clergy, students, and outside volunteers visit the facility? • Ask about visiting policies. When can you visit? Can you have any privacy with the resident? Can you take the resident off the grounds? The more “open” the facility, the better. • Look around and see how many residents are restrained. Sometimes restraint is necessary, but only a small proportion of residents, if any, should be restrained.

• How are routine medical and dental care handled? Do health professionals visit the facility? Or are residents taken to physicians and dentists? Can they be taken to their own providers? Ask about medical emergencies. Is there a physician on call? Which hospital(s) does the facility use? • Ask about end-of-life decisions. If your loved one has a living will and does not wish to be kept alive with heroic, technological measures, will those wishes be respected? What are the steps to activate a living will? • Ask about disaster planning, smoke detectors, fire alarms, and the evacuation plan. • Get all information about fees in writing. What is included in the base fee? Are there any “extras”? Are fee increases possible? How does the facility work with Medicare? Medicaid? Long-term care insurers?

Moving your loved one to a facility The actual move is often more traumatic for caregivers than for affected individuals. Should you tell the person about the move? That depends on both you and your loved one. Alzheimer’s sufferers who still have enough cognitive function to know what is happening to them often feel better about being informed. Others whose impairment is more severe may be incapable of understanding changes and should be told one or two seconds beforehand with a smile, relaxed attitude and gentle conversation as they are guided through the move. The transition from one environment to another can be particularly hard on cognitively impaired people. When Ross and her sister recently moved their dad from a nursing home to a specialized Alzheimer’s assisted living facility, they both took time off from work. “Family members should be there during the transition as much as possible,” Melinda Ross said. This can help ease fear of the unknown for the resident, and help family members feel comfortable with the new facility.

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Questions & Answers Lately I have noticed it is getting more difficult to see my TV and read the newspaper. The last time I went to the eye doctor was nine years ago. After I pay all my bills and buy my medications, I do not have enough money to get new glasses. Are there any programs that may help me?

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Since Medicare does not pay for routine eye exams or eyeglasses, your plight is one we hear often. Eye care coverage is one of the benefits that make many Medicare HMOs advantageous over Medicare fee-for-service. Aside from personal insurance, other eye care resources include the following: The Lions Club, a fraternal organization, assists people needing eye care and glasses. Each Chapter contracts with local optometrists and ophthalmologists who provide services to qualified recipients. Your local Chamber of Commerce or Elder Helpline may be able to assist in locating an officer or member of the Lions Club nearest you. If you live in Southeast Florida, you may wish to call the College of Optometry at Nova Southeastern University in Ft. Lauderdale at 954/262-1000. Services are provided by students who are supervised by professional, teaching optometrists. Costs are $25 for an exam and one pair of single vision glasses. There is an additional charge for bi-focal lenses. If a person is eligible, Florida

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Medicaid provides eye care services performed by licensed, Medicaid-participating ophthalmologists, optometrists and opticians. Services include eyeglasses (maximum two pair per year), eyeglass repairs as required, and contact lenses. Contact the nearest local office of the Florida Children and Family Services Public Assistance Unit to receive further information or to apply. The best starting point for information and referral for senior services is the Elder Helpline. Information Specialists at the Helpline may know of neighborhood clinics and service organizations in your area that offer eye care assistance. Calling 1-800/96ELDER (1-800/963-5337) will connect you with the Elder Helpline in your area. My husband has had peptic ulcers for the last five years. The doctor just keeps prescribing antacids which do very little good. Is there any other help?

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Most people who have peptic ulcers believe the condition is one they will simply have to live with for the rest of their lives, but there is good news. Peptic ulcers are caused by an infection, not stress or psychosomatic troubles, as was once believed. And the infection can be cured! In 1984, an Australian doctor, Barry Marshall, took an H. pylori co*cktail to prove his theory that ulcers were caused by the H.

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Come visit the Department of Elder Affairs ON THE INTERNET http://www.state.fl.us/doea/doea.html

pylori bacteria. The treatment is called a co*cktail because it is a mixture of drugs, including an antacid and an antibiotic. Five antibiotic-antacid drug regimens have now been approved by the U. S. Food and Drug Administration (FDA). According to a 1994 survey, the National Institutes of Health found that fewer than 2percent of doctors prescribe antibiotics for ulcers. Congress recently asked the Centers for Disease Control (CDC) to get the word

out. A campaign addressing the cures for ulcers caused by H. pylori bacteria has been developed by the CDC, and pamphlets and other educational materials are being sent to doctors and pharmacies nationwide. For more information, people can call, tollfree, 1-888/698-5237. (This information is provided by Sylvia Peaco*ck, Information Specialist, Department of Elder Affairs, Information Clearinghouse.)

Med School for Elders continued from page 1

about elders’ special health concerns is scattered through many different kinds of courses. Also, not all students make elder-oriented health training a priority. A year ago, the University of South Florida medical school became the first state university to build mandatory elder-oriented training into its curriculum — but it still only requires students to take 16 hours of geriatric training out of a total of about 5,000 hours of training. Meanwhile, Nova Southeastern University’s College of Osteopathic Medicine requires its students to take extensive elderoriented training. Elder advocates have been pushing for a greater focus on elder health training for decades. Florida’s Silver-Haired Legislature established better geriatric training as one of its first priorities when it was formed in 1977. Florida’s Pepper Commission, named for the late U.S. Rep. Claude Pepper, fought for such training as well. In 1997, a task force set up by the Florida Department of Elder Affairs issued a report on establishing a geriatric model of care. “Florida has needed a special focus on elder-oriented medical training for a long time,” said DOEA Secretary E. Bentley Lipscomb. “As a Florida State alumnus, I am particularly proud

that Florida State University has stepped forward to meet this critical need.” Lipscomb noted that Florida has a higher proportion of elders in its population than any other state. Nationally, only about 12.5 percent of the population is age 65 or older — but 19 percent of Florida’s population is 65-plus. In some popular retirement areas in Central and Southwest Florida, elder percentages run much higher — as high as a third of the population. Further, Florida is aging rapidly— the state’s 85-plus population is growing three times as fast as the overall population. These rapid increases in elder populations pose special health challenges. For example, recent studies suggest that anywhere from one-third to one-half of all persons aged 85 and older are at some stage of Alzheimer’s Disease. About half of all nursinghome patients are thought to suffer from depression. A majority of older women, and about onethird of all older men, suffer from loss of bone density because of osteoporosis. Yet the state has a shortage of trained geriatricians and a severe lack of specialized training in elder health care for physicians in family practice emergency and internal medicine.

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Calendar of Events Feb. 28-March 15 Polk County — 6th Annual Polk Senior Games. Open to all elders 50 and older. About 2,000 expected to attend. Events held throughout the county. Call: 941/533-0055.

March 21 Boca Raton — Fifth annual “Spring Snow,” to benefit the deho*rnle Alzheimer’s Pavilion in Deerfield Beach. Black tie. $100. co*cktail reception, 6 p.m., dinner, dancing, raffle to follow. Boca Raton Marriott, 5150 Town Center Circle. Call: 954/420-0704.

26 – 29 Fort Myers — Reunion of the Florida Chapter of the Second Air Division Association, 8th Air Force Veterans of World War II. Sheraton Harbor Place. Call: Fred K. McConnell at 941/549-2747, or write: Fred K. McConnell, P.O. Box 482, Cape Coral, FL 33910.

28 Clearwater — “1998 Spring in Bloom” fashion and show and luncheon, to benefit The Hospice of the Florida Suncoast. $25 general admission, $36 patron seating. 11 a.m. Harborview Center, 300 Cleveland Street. Call: Audrey

Presbyterian Retirement Communities Pick-up Presbyterian Retirement Communities is a corporate member of the Elder Floridians Foundation, which partially underwrites Elder Update

Piotter at 813/588-1302 or Amy Schowalter at 813/586-4432. Reservation deadline: March 17.

29 Sarasota — “Silver Celebration,” benefitting Senior Friendship Centers. The Friendship Center, 1888 Brother Greenen Way. Call: Peg Palmer at 941/955-2122.

MONDAY St. Petersburg — Alzheimer’s support group, for caregivers. 6 p.m. Neighborly Senior Services Lealman Adult Day Care Center. 3455 58th Ave. N. Call: 813/573-9444. Winter Park — Children of Aging Parents (CAPS) support group, Group II. Third Monday only. 7-8:30 p.m. Miller Center, 2010 Mizell Ave. Call: 407/6295771.

TUESDAY Hollywood — National Association of Federal Retired Employees, Chapter 162 meeting. Third Tuesday only. 2 p.m. MultiPurpose Center, 2030 Polk St. Call: 954/921-1714 or 954/923-7965. Oviedo — Children of Aging Parents (CAPS) support group, Group III. Fourth Tuesday only. 11:30 a.m.-1 p.m. Center for Heatlth & Wellness. Call: 407/629-5771. Sebestian — Bereavement support group. Second and fourth Wednesday only. 6:30 p.m. Our Savior Lutheran Church, 1850 6th Ave. Call: 561/567-8144, ext. 380. Winter Park — Children of Aging Parents (CAPS) support group, Group I. Fourth Tuesday only. 4-5:30 p.m. Miller Center, 2010 Mizell Ave. Call: 407/6295771.

WEDNESDAY Orlando — NYSUT-Teacher Retirees in Florida. First Wednesday only. Golden Corral, Hwy 436 & Grant St. 11 a.m.

THURSDAY Boca Raton — National Association of Federal Retired Employees. Second Thursday only. 1 p.m. Boca Community Center, 150 N.W. Crawford Ave. Call: 561/395-0542 or 561/499-5456. New Port Richey — “Helping the Elderly with Legal Problems.” 1-4 p.m. Half-hour appointments, twice a month. West Central Florida Chapter of the Alzheimer’s Association, 6640 Van Buren St. (Claude Pepper Senior Center). Call: 813/848-8888.

FRIDAY Sunrise — Broward Chapter 1698 of the Retired Federal Employees. Second Friday only. 9:15 a.m. Nob Hill Recreation Center, 10400 Sunset Strip. Call: 954/726-0489.

Fernandina Beach — Alzheimer’s Support Group, fourth Friday only. 2:30-4 p.m. Nassau County Council on Aging. 1367 South 18th St. Call: 904/261-0701.

SATURDAY Daytona Beach — Meeting of Volusia County Retired Educators Association, Unit I, District IV, fourth Saturday only. 11:15 a.m. Stacey’s Restaurant, Daytona Beach Outlet Mall. Call: 904/322-7788.

SUNDAY St. Augustine — Celebrity Chef Breakfast, second Sunday only, fundraiser for the St. Johns County Council on Aging. 9 a.m.-1 p.m. St. Johns County Senior Center. 11 Old Mission Ave.

Florida flooding: Are you prepared? million policy holders in Florida loods can happen anytime and (44 percent of the nation’s policies) Fdestruction anywhere causing major in 408 communities across the and devastation. The emotional and financial distress is magnified when victims realize most homeowners and business insurance policies do not cover losses due to flooding. Even if your home is located outside a flood-prone area, it is important to be covered by flood insurance. You do not have to live close to the water to become a flood victim. More than one-third of all flood claims come from outside high-risk areas. In 1968, Congress established the National Flood Insurance Program (NFIP) administered by the Federal Emergency Management Agency (FEMA). This federal program was created to provide affordable flood insurance to residents in local communities which are susceptible to flooding. Currently, the National Flood Insurance Program serves over 1.5

state. To participate, a community must adopt and implement floodplain management regulations to reduce future flood damage. Florida’s geographic locale in reference to the top of the aquifer makes the state particularly vulnerable to flooding. Are you prepared for a flood? You can protect your home and finances through the National Flood Insurance Program. Primary residences insured for 80 percent of their value, or the maximum amounts available, receive replacement cost coverage. Contact your insurance agent or company and ask about the National Flood Insurance Program and whether your community is participating. For additional information call 1-888/CALL-FLOOD, ext. 304 (TDD# 1-800/427-5593) or visit FEMA’s Web Site at http://www.fema.gov.

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Florida Elder Helpline Directory (County-by-county listings)

A Starting Point

Alachua..............352-336-3822 Baker.................904-259-1388 Bay ....................850-769-3468 Bradford ............904-964-4545 Brevard..............407-631-2747 Broward ............954-714-3464 Calhoun .............850-674-4163 Charlotte ............941-637-8019 Citrus .................352-746-1844 Clay....................904-284-5977 Collier................941-774-8443 Columbia ...........904-755-0235 Dade ..................305-670-4357 DeSoto ...............941-494-5965 Dixie ..................800-262-2243 Duval .................904-798-9503 Escambia ...........850-432-1475 Flagler ............1-888-252-6110 or 904-437-7222 Franklin .............850-697-3760 Gadsden.............850-627-2223 Gilchrist .............800-262-2243 Glades................941-946-1821 Gulf....................850-229-8466 Hamilton............904-792-2136 Hardee...............941-773-6880 Hendry...............941-983-7088 Hernando ..........352-796-0485 HighlandsAvon Park .........941-452-1288 Lake Placid .......941-465-1199 Sebring .............941-382-1288 Hillsborough......813-273-3779 Holmes ..............850-547-2345 Indian River.......561-569-8555 Jackson Marianna ..........850-482-5028 Graceville..........850-263-4650 Jefferson ............850-342-0271 Lafayette.............904-294-2202 Lake...................352-326-5304 Lee.....................941-433-3900

1-800-96-ELDER ( 800-963-5337 )

Information and referral is available at your nearest Area Agency on Aging or Elder Helpline. The Elder Helpline is the starting point if you are seeking information about aging issues, looking for an aging service provider, or wanting to volunteer. Elder Helplines are called by different names in different communities; for example, Senior Connection (Broward County) or Age Link (Lee County). You can contact the Elder Helpline nearest you by calling either the county number listed below or the statewide helpline number, 1-800-963-5337, Monday through Friday, 8 a.m. to 5 p.m. Florida Area Agencies on Aging (Listings for Area Agencies on Aging)

NORTHWEST FLORIDA AREA AGENCY ON AGING 6500-B Pensacola Boulevard Pensacola, FL 32505 850-484-5150 (Escambia, Okaloosa, Santa Rosa, and Walton Counties) AREA AGENCY ON AGING OF NORTH FLORIDA, INC. 2639 N. Monroe St., Suite 145-B Tallahassee, FL 32303 850-488-0055 (Bay, Calhoun, Franklin, Gadsden, Gulf, Holmes, Jackson, Jefferson, Leon, Liberty, Madison, Taylor, Wakulla, and Washington Counties) MID FLORIDA AREA AGENCY ON AGING 5700 S.W. 34th St., Ste. 222 Gainesville, FL 32608 352-378-6649 (Alachua, Bradford, Citrus, Columbia, Dixie, Gilchrist, Hamilton, Hernando, Lafayette, Lake, Levy, Marion, Putnam, Sumter, Suwannee, and Union Counties) NORTHEAST FLORIDA AREA AGENCY ON AGING 590 S. Ellis Road Jacksonville, FL 32254 904-786-5111 1-888-242-4464 (Baker, Clay, Duval, Flagler, Nassau, St. Johns, and Volusia Counties) TAMPA BAY REGIONAL PLANNING COUNCIL AREA AGENCY ON AGING 9455 Koger Blvd. Hendry Building St. Petersburg, FL 33702 813-577-5151 (St. Petersburg) 813-224-9380 (Tampa) (Pasco and Pinellas Counties)

WEST CENTRAL FLORIDA AREA AGENCY ON AGING 5911 Breckenridge Pkwy., Suite B Tampa, FL 33610 1-800-336-2226 or 1-813-623-2244 (Hardee, Highlands, Hillsborough, Manatee, and Polk Counties) SENIOR RESOURCE ALLIANCE 1011 Wymore Rd., Suite 207 Winter Park, FL 32789 407-623-1330 (Brevard, Orange, Osceola and Seminole Counties) AREA AGENCY ON AGING OF SOUTHWEST FLORIDA 2285 First Street Fort Myers, FL 33901 941-332-4233 (Charlotte, Collier, DeSoto, Glades, Hendry, Lee, and Sarasota Counties) AREA AGENCY ON AGING OF PALM BEACH/TREASURE COAST, INC. 8895 N. Military Trail, Suite 201-C Palm Beach Gardens, 33410 561-694-7601 (Indian River, Martin, Okeechobee, Palm Beach and St. Lucie Counties) AREA AGENCY ON AGING OF BROWARD COUNTY 5345 N.W. 35th Ave. Ft. Lauderdale, FL 33309 954-485-6370 (Broward County) ALLIANCE FOR AGING 9500 S. Dadeland Blvd., Suite 400 Miami, FL 33156 305-670-6500 (Dade and Monroe Counties)

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Leon ..................850-575-9694 Levy ...................800-262-2243 Liberty ...............850-643-5613 Madison.............850-973-2006 Manatee .............941-742-5818 Marion...............352-629-7407 Martin................561-283-2242 Monroe..............305-292-4520 So. Florida ........800-273-2044 Nassau Fernandina ......904-261-0701 Westside ...........904-845-3332 Okaloosa ...........850-833-9165 Okeechobee.......941-462-5180 Orange...............407-623-1380 Osceola..............407-623-1380 Palm Beach in-county..................930-5040 out-of-county ....561-547-8677 Pasco in-state..............800-861-8111 out-of-state .......813-576-1533 Pinellas ..............813-576-1533 Polk ...................941-534-5320 Putnam ..............904-329-8963 Santa Rosa Holly, Navarre, Gulf Breeze .......850-939-5923 North ...............850-623-0467 Sarasota North ................941-955-2122 Englewood........941-475-4056 North Port.........941-475-4056 Seminole............407-623-1380 St. Johns .........1-888-252-6110 or 904-794-0740 St. Lucie.............561-465-1485 Sumter ...............352-793-5234 Suwannee ..........904-364-5673 Taylor ................850-584-4924 Union.................904-496-2342 Volusia...............904-253-4700 Wakulla..............850-926-7145 Walton ...............850-892-8168 Washington ........850-638-6216

If you need information about, or referral to, a service provider outside the state of Florida, call the national Eldercare Locator Service at 1-800-677-1116. An information specialist is ready to assist you Monday through Friday from 9 a.m. to 11 p.m. EST. For people with Telecommunication Devices for the Deaf (TDDs), all Elder Helplines, as well as the Eldercare Locator Service, can be accessed through the Florida Relay Service at 1-800-955-8771.

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Florida AARP seeks volunteers for its Tax-Aide program as AARP celebrates its 30th anniversary. Local volunteers will be trained under the auspices of the IRS in basic income tax preparation with an emphasis on the new laws affecting elders. A minimum commitment of four hours per week from Feb. 1 through April 15 is required at a work place near your home. For more information, call AARP toll-free at 888/227-7669.

FLORIDA POWER & LIGHT CO.

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Volunteer Help Wanted Alachua County

Dade County

SantaFe Community Care needs volunteers to deliver meals to homebound elderly in Gainesville one day a week. Volunteer Coordinator also needed. Call Karen Warren at 352/336-3822.

The Center for Independent Living of South Florida (CILSF) seeks volunteers to work as teacher’s aides in a classroom of 25 young adults with severe physical and intellectual disabilities. Hours are needed from 8 a.m.-noon or 10 a.m.2 p.m., Monday-Friday. Also, the center is looking for the following volunteers for specialized work: a retired architect or someone with similar background to help Dade businesses comply with the Americans with Disabilities Act; someone with the knowledge of how to bring together community resources to provide home modifications and ramps for people with disabilities who fall through the cracks and are in danger of being warehoused in institutions because they can’t afford to make their home accessible.

Broward County The Alzheimer’s Family Center is recruiting volunteers for the Volunteer Companion/Sitter Program to provide in-home respite care one day a week. For more information, call Rochelle Donohue at 954/9717155.

Clay County

Pick-up Florida Power & Light Co. is a corporate member of the Elder Floridians Foundation, which partially underwrites Elder Update.

ELDER UPDATE

The Clerk of the Circuit Court has a variety of volunteer positions available in a program ideal for retirees and professionals who, for whatever reason, are no longer in the work place and want to make a valuable contribution to their community. Hours and days are completely flexible. Call Syd Perry at 904/529-3602.

Marion County The AARP’s Tax-Aide program is seeking volunteers to provide free tax assistance to low- and moderate-

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income people. Write to: AARP, 33516 I. Picciola Drive, Fruitland Park, FL 34731.

Martin County The Martin County Health Department needs volunteers for the following programs: Pediatrics, Environmental Health, Family Planning, Christmas for Seniors Program, Flu Vaccine Assistance and a Historian. Call Tom Powers at 561/221-4037.

Palm Beach County The Palm Beach County Division of Senior Services is looking for dedicated volunteers who want to help homebound elders. Volunteers with special skills (home repair, yardwork, painting, etc.) are particularly needed. Call Janet Villasmil at 561/355-4683.

Sarasota County The Sarasota Memorial Hospital has a wide variety of volunteer opportunities, including the Cardiac Units, “Early Birds,” and at the Intensive Care Open Heart Reception Desk.” For more information, call 941/917-7277.

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MEDICARE/MEDICAID FRAUD Medicare fraud has become one of the nation’s fastest-growing crimes, according to the FBI and other authorities. In Florida alone, the tab is estimated at $1 billion annually, roughly a tenth of the state’s total Medicare billings. Who suffers when Medicare is defrauded? You do — because it’s your tax dollars that end up in the pockets of swindlers, and it is these frauds that have prompted Congress to propose reductions to Medicare. Here is a recent news story related to Medicare and Medicaid fraud in Florida:

Homestead medical center cited for Medicaid fraud A

South Florida medical center used illegal recruiting tactics for Medicaid patients and failed to bill much of the medical care to the state medical insurance program, according to Medicaid fraud investigators with the Florida attorney general’s office. Allied Medical Center of Homestead offered patients free cable television installation and

By Lois Herron AARP Florida State President The AARP Florida State Legislative Committee (SLC) is a volunteer body composed of AARP members from across the state. The SLC is authorized by AARP to initiate, coordinate and monitor AARP involvement with state legislatures. Their work includes determining the legislative priorities, developing, organizing and monitoring state legislative strategies; and providing advocacy

cash allowances along with their physical examinations and prescription drugs in return for getting the patients’ Medicaid card numbers. Investigators from the attorney general’s Medicaid Fraud Control Unit, working with other state agencies, raided Allied in January, placing one secretary under arrest and interviewing doctors and

promising further arrests. Juanita Rodriguez, a 26-year-old secretary, was arrested on 11 counts of Medicaid fraud. The facility was subsequently shut down. In interviews with more than 60 people whose Medicaid accounts were billed for treatment at Allied, one investigator told The Miami Herald that most of

them said they have never been to the facility. Others said they had received $25 each in exchange for providing family members Medicaid billing numbers, according to investigator Tom Watterson. While Watterson said he didn’t know the total amount of fraud or the number of patients involved, he told the Herald, “It was a busy place. I can tell you that.”

on important bills. The SLC is chaired by Cecil N. Smith from Gainesville. The SLC is supported in its work by a Capital City Task Force (CCTF) which strengthens AARP’s presence in Tallahassee and helps promote and advocate AARP legislative interests in lawmakers. Duties of the CCTF members include tracking bills, attending legislative hearings, testifying before legislative committees, preparing legislative updates and researching issues. The CCTF is chaired by Walter Young from Tallahassee. The AARP/VOTE program educates the public about important public policy issues and where candidates for public office stand on them. The AARP/VOTE Coordinator serves as an ex-officio member of the SLC. Each year the Florida State Legislative Committee selects legislative priorities that are consistent with the policies adopted by AARP’s Board of Directors. These priorities are based on the needs of the state’s residents and developed

from feedback from member surveys, general member communications and AARP-sponsored hearings and events. Throughout the year, the SLC may work on other legislative and regulatory proposals as they arise. The 1998 Florida SLC Legislative priorities are as follows: • Support through legislation the creation of a Managed Care Consumer Assistance Program that will provide enhanced consumer protection; consumers’ involvement in performance assessment of plans; consumers’ involvement in the plans’ decision making; and the creation of an ombudsman program within managed care. • Support through legislation the expansion of long-term care programs in Florida to increase funding of community and homecare programs that will allow citizens to age with dignity in their own homes and communities. • Monitor the implementation of telecommunication laws and participate actively in the debate on deregulation of the electrical industry to ensure universal and

affordable service to all Floridians. • Support the recreation and funding of the system of public financing of campaigns for the election of the governor and cabinet members as well as achieving reduced campaign expenditure and more equitable campaign finance laws and enforcement. • Support and cooperate with the Florida Retired Teachers Association in their legislative priorities. (For additional information or to volunteer, contact the AARP Florida State Office at 813/576-1155.)

is available in both braille, and on cassette tape. To order your copy, call 850/239-6000.

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ELDER UPDATE

Elder Affairs publishes strategic plan for 1998-2003 By Sandi Smith /Elder Update correspondent

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s the state agency with the primary responsibility for Florida’s elders, the Department of Elder Affairs is developing policy to balance growth in the number of frail elders with anticipated pressures on the state budget. To address these issues, the agency has developed its strategic plan for 1998-2003. This summary highlights the major directions the department will take in the next five years.

Strategic Issue One: Targeting of long-term care resources Florida’s elder population of 3.4 million represents 24 percent of the state’s residents and will

grow to more than 4.5 million by 2010. At the same time, the number of severely disabled elders will increase by 42.5 percent. With tight public resources available to fund long-term care services for this growing population, impaired elders will have difficulty receiving the support necessary to remain in their own communities and maintain their quality of life. Therefore, the state must identify individuals who will benefit most from home and community based long-term care and find ways to make care accessible and affordable to them. The goals, then, would be: Home and community-based services are provided to those most in need;

Bill would reimburse scam victims sooner

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lorida lawmakers could bring timely relief to more than 1,000 Florida citizens victimized by largest investment frauds in state history. The Florida Legislature will consider a bill that creates the Investment Fraud Restoration Corporation. This corporation would assist Comptroller Robert F. Milligan in compensating approximately 1,000 Florida citizens — mostly retirees. (sooner than previously legislated.) These citizens were bilked out of nearly $20 million by GIC Government Securities during the mid-1980s. “This corporation would be able to issue bonds and take other measures that would speed the compensation of these victims,” Milligan said. In 1985, the state shut down GIC’s operations after complaints from investors. Investigation by the Comptroller’s Office revealed that the company had been selling worthless securities, using money from new investors to pay dividends to previous clients, and diverting funds to pay company expenses and person accounts. GIC owner Lonnie Kilpatrick and four brokers were eventually convicted on a variety of charges. But investors were never able to receive full compensation for their losses. In 1996, legislation initiated by Milligan was enacted, with the support of the securities industry, to increase securities registration fees from $20 to $40 and use $10 of the higher fee for a compensation fund. The additional fees generate approximately $1.7 million per year. Money is distributed annually to pay GIC claims as funds become available. But there is only enough money to make partial payments to victims on nearly $8 million in claims. The creation of the Investment Fraud Restoration Financing Corporation would allow victims to be paid sooner than the seven years currently estimated. Funds from the increased fees would be used to service the debt incurred by the payment. Legislation also extends the time to file claims until Dec. 31, 1998 to help those previously unaware of the earlier deadline.

elders will live in the least restrictive setting; and elder functional status is maintained or improved.

Strategic Issue Two: Managing a changing service delivery environment Crucial to addressing the conflict between the increasing demand for long-term care and the decreasing ability of government to provide these services is an analysis of the current service structure. The state system should critically evaluate its effectiveness and develop ways to foster innovative and more productive alternatives to traditional models of care. The goal: Long-term care resources are used in the most efficient and effective way.

Strategic Issue Three: Responsible aging and independent functioning Another means of reducing reliance on public-funded long-term care services is to better prepare people under 60 years of age to take more responsibility for their own care. The next 15 years present an opportunity to educate the looming explosion of baby boomers about

aging responsibly. It will be important for these individuals to maintain their health, plan for their retirement and anticipate their long-term care needs. Communities will also need to develop adequate support systems to enable the elderly to live as independently as possible. The goals: • Elders will maintain or improve their economic independence. • Elders will maintain or improve their nutrition. • Elders and their families will be better informed to make decisions about health, housing, social services, and/or long-term care options. • Elders and their families will take more responsibility to provide for their own long-term care needs. • Create an environment in Florida that fosters independent functioning in the community by individuals with impairments. • Elders will maintain or improve their home environment. • Elders will maintain or improve their social interaction. Copies of the plan are available by writing to: Bureau of Planning and Research, Department of Elder Affairs, 4040 Esplanade Way, Suite 315, Tallahassee, FL 32399-7000.

Moving? Address Change? Receiving Multiple Copies? Please let us know! We want to cut unnecessary postage costs. Allow six to eight weeks for your address to be changed.

Send this label with your corrections to: Bonni Singer, Database Manager, The Florida Department of Elder Affairs, P.O. Box 10118, Tallahassee, FL 32302 Corrections:

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Please note: if the U.S. Postal Service changes your zip code, Elder Update will automatically make the change. You do not need to send in a correction.

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