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ENHARRIET18

Alzheimer's hits a couple after half-century of marriage

Harriet Garzero

An English professor struggles to write a sentence. An accountant cannot balance a checkbook. A mechanic does not understand how to use a fork. A mother no longer recognizes her children. 
The face of Alzheimer's disease may vary. It is an affliction that knows no racial, social or intellectual boundaries, and each individual who suffers from it may display different symptoms and behaviors. But its conclusion remains the same and for those who watch their loved ones suffer from the disease, the journey is one of unending sacrifice, financial struggle and emotional pain. 
There is no cure for Alzheimer's. It is a degenerative, fatal disease and the most common cause of dementia, accounting for 60 to 80 percent of all cases. Alzheimer's is most prevalent in those over the age of 85, but five to 10 percent of all cases occur in those under 65 in what is called early or young-onset Alzheimer's. 
There are more than 35 million people worldwide with Alzheimer's and 5.3 million people in the <a href="/topics/United_States">United States</a>, according to the Alzheimer's Association, with more than 55,000 cases on Long Island. But experts warn that those numbers may actually be double, as many individuals go through this disease without ever receiving an official diagnosis. 
Most worrisome, experts said, are the decades ahead. The Alzheimer's Association estimates that the disease costs this country $148 billion annually. By 2050, as the baby boomer generation ages, the number of Alzheimer's patients is expected to surge to between 11 million and 16 million in the <a href="/topics/United_States">United States</a> and to 115 million worldwide. When those who work in the field of dementia talk about the impact this will have on our health care system, one word is repeatedly used: tsunami. 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys (photos may be extremely emotional) </a> 
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<a href="http://longisland.newsday.com/projects/alzheimers/">&gt;&gt;MULTIMEDIA: Click here to see videos, photos, stories of Alzheimer's patients and caregivers, timelines, and more</a> 
"I don't think the government or society is getting it yet," said Barbara Vogel, program coordinator for the Neuwirth Memory Disorders Program at Zucker Hillside Geriatric Center in Glen Oaks. "And if they don't, we are about to crush the health care system because there's no way they'll be able to provide the array of services that's required to maintain these guys." 
The <a href="/topics/National_Institutes_of_Health">National Institutes of Health</a> spent $412 million on Alzheimer's research in 2008 and estimates spending $423 million in 2009. But federal funding for Alzheimer's research has remained relatively stagnant in recent years and a fraction of what is allocated for other diseases and afflictions even though Alzheimer's is the sixth leading cause of death in the <a href="/topics/United_States">United States</a>. Since 2004, members of both the House and <a href="/topics/U.S._Senate">Senate</a> have attempted to introduce legislation increasing Alzheimer's funding to more than $1 billion. This year's version of The Alzheimer's Breakthrough Act seeks to bump NIH funding for the disease to $2 billion. 
"I believe the difference is our population can't march into Washington, D.C., and stand on the Capitol steps and demand funding," said Eric Hall, president and chief executive of the Alzheimer's Foundation of America. "The people who have the disease aren't coming, and the families are too busy giving care. This population doesn't have a loud bark, which generally gets the attention." 
Part of the problem is that although it has been more than 100 years since German psychiatrist Alois Alzheimer first described the disease, scientists are still uncertain about the cause of Alzheimer's. 
The key components of Alzheimer's appears to be the development of plaques - a buildup of protein deposits between nerve cells called beta amyloid - and tangles - fibrous entanglements consisting of a protein called tau that form inside nerve cells. Although everyone develops scattered plaques and tangles in their brains as they age, it is the overwhelming abundance that is so striking in people with Alzheimer's. These toxic proteins annihilate nerve cells. Although the common perception is that Alzheimer's disease involves memory loss, the death of brain cells eventually affects every function the brain controls, including swallowing and breathing. 
There are three medications now available to slow the progression of some symptoms of the disease, although there are side effects and the drugs' effectiveness varies for each individual. <a href="/topics/Peter_Davies">Peter Davies</a>, director of the Litwin-Zucker Center for Research in Alzheimer's Disease and Memory Disorders in Manhasset, said this is an exciting time in Alzheimer's research and estimates that every pharmaceutical company in the world as well as some biotech companies are working on a form of drug to battle the disease's progression. 
"What I think we will be able to do over the next five to 10 years is slow the rate of progression," Davies said. "So you really have a group of patients on a drug who look a lot like me, still somewhat forgetful, not entirely sharp and there, but relatively functional both in a social and an occupational way." 
For the families in the throes of caregiving, the how and why of Alzheimer's matter less than the here and now. Trying to get a definitive diagnosis is often the first stumbling block. Experts say there is a dire need for more early diagnosis, but primary care physicians - often the first stop for patients - are rarely trained in dementia. In fact, they say, medical schools rarely offer more than a lecture on Alzheimer's. Similarly, nurses and home health aides are often unaware of the progression of the disease or how to approach Alzheimer's patients. 
"There needs to be education," said Darlene Jyringi, program director at the Alzheimer's Disease Assistance Center of Long Island at Stony Brook University Medical Center. "From the aide right through the physicians . . . there is a need for training." 
According to the Alzheimer's Association, there are 9.9 million unpaid caregivers in the <a href="/topics/United_States">United States</a> providing care valued at $94 billion. Depending on the individual and at what stage the person is diagnosed, the disease can last anywhere from two to 20 years, experts said. Once an Alzheimer's patient moves beyond the early stages, caregiving can become emotionally and physically strenuous. Loved ones suffering from the disease may wander, become aggressive or violent and eventually require 24/7 care, including medication management, dressing, toileting and feeding. 
"Of all of the diseases, I think dementia is the one that will tear families apart over time because even if you can handle it at one point in the disease, it doesn't mean you can handle it at another point and another point," said Teepa Snow, a dementia care specialist and trainer who travels the country giving presentations to caregivers and professionals. 
The strain often leads to caregivers becoming ill themselves, oftentimes dying before the patient. Emotionally, caregivers also bear the weight of having a loved one lose all memories of a spouse or child, experience a change in personality and slowly lose control of their functions. 
"We refer to this illness as a journey of grief," Vogel said. "The families mourn the entire journey with this illness, every time they see another decline." 
On Long Island as in many communities, some families are also part of the "sandwich generation" of caregivers, those trying to raise their own families while caring for a parent. 
"Previous generations didn't face this same challenge," said Elizabeth Geary, director of Day Haven Adult Day Services in Ronkonkoma. "While they might have provided care for grandma at home, grandma died at a much younger age and the caregiving didn't go on for years and years and years. It's a whole different challenge for families now." 
Caregivers also struggle financially. Placing a loved one in an assisted living or nursing facility can cost from $6,000 to $14,000 a month on Long Island. Trying to keep a patient at home can be less expensive but still a hardship, at tens of thousands of dollars a year, experts said. Medicare pays for limited home services after hospitalization, and middle-class families often earn too much to qualify for the more extensive coverage provided by Medicaid. The only other options, experts said, are either spending down to meet Medicaid requirements or private-pay, which can quickly wipe out long-collected savings and retirement accounts. The current recession, which has forced the closure of certain community-based programs, such as adult day care, has only heightened the need for more services. 
"At the end of the day the problem is that families who are caring for someone with Alzheimer's disease need support on a daily basis," said Fred Jenny, executive director of the Long Island Alzheimer's Foundation in Port Washington. "These are services that enable their loved one to stay in the community. They can't defer that care until we get better economic times. So it's not like delaying buying a car. When you need the services, you need the services." 
Those who advocate for more services and funding said they take comfort in seeing an increase in awareness of a disease often referred to as a "silent epidemic." But they also caution that caregivers require more assistance starting now, before the numbers rise and the need reaches catastrophic proportions. 
"I think in another couple of years we might be able to say something more positive because the research is moving in a positive direction," said Mary Ann Malack-Ragona, executive director and chief executive of the Long Island chapter of the Alzheimer's Association in Ronkonkoma. "But right now there's not a lot of hope that we're going to be able to fix any of the issues and they [caregivers]know, there's a realization that these issues are only going to get worse because the disease process is going to continue to get worse." 
<a href="http://longisland.newsday.com/projects/alzheimers/?DOM_id=alzheimers-reporters-cp">&gt;&gt;MULTIMEDIA: Click here to go behind the scenes with reporter Denise Bonilla and photographer John Williams</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more</a> 
<a href="http://longisland.newsday.com/templates/simpleDB/?database=editfeed&amp;table=alzheimers_resources&amp;q="> Click here to search our resource guide for Alzheimer's groups, topics and Web sites</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-alzheimer-s-a-z-1.1488801"> Click here for Alzheimer's A-Z: Answers to all your questions</a> 
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ENINTROFULL

Alzheimer's tsunami poised to hit Long Island

ENHENLEY11

Mom and her teens care for dad with early onset Alzheimer's

Alzheimer Henley

ENPARENTS

Ravages of Alzheimer's turn children into parents

Thomas Rowe

ENBOB01

Alzheimer's: A devoted husband says goodbye

Alzheimer's Schreibman 7

ENGLORIA01

Love, long bus rides and Alzheimer's 

Gloria Richmond

The job of caregiver is one of endless struggle, and those who work with Alzheimer's caregivers say it is a struggle that is too often ignored by policy-makers. 
Now, with experts predicting a surge in the number of Alzheimer's cases in the coming decades, advocates worry that the needs of patients and caregivers could overwhelm the health care system. 
"We don't have enough infrastructure right now to handle what we have," said Eric Hall, president and chief executive of the Alzheimer's Foundation of America. "If we're not ready for what we've got ... when do we start building an infrastructure for what we know is coming?" 
The six families profiled in Newsday's recent Alzheimer's series represent only a tiny fraction of those struggling against the disease while grappling with government services and the health care system. 
There are about 5.3 million Americans with Alzheimer's - 55,000 on <a href="/topics/Long_Island%2C_NY">Long Island</a> - and nearly 10 million caregivers. Estimates are that by 2050, Alzheimer's cases will surge to as much as 16 million. 
Alzheimer's is a degenerative, fatal disease and the most common cause of dementia. It is most prevalent in those over 85 - where it may strike 1 out of 2 people - but 5 percent to 10 percent of all cases occur in those under 65 in what is called early- or young-onset Alzheimer's. 
There is no cure but researchers hope in the next 10 to 15 years to find new ways to stave off the disease's progression. 
"What are we going to do for the next 15 years or more?" asked Hall. "How do we support those people?" 
Change from ground up 
Those in the field want to see change from the ground up, starting with physicians. 
"The field has now reached about 7,000 certified geriatricians for a country that needs at least 14,000 and will need in excess of 30,000 within the next two or three decades," said Dr. Gisele Wolf-Klein, director of geriatric education for the North Shore-LIJ health system. 
To that end, Wolf-Klein said many geriatricians are acting as mentors to other doctors, teaching them about elder care. Hall said his group is also creating an advisory board to make curriculum recommendations to medical schools. 
Mary Ann Malack-Ragona, head of the <a href="/topics/Long_Island">Long</a> Island chapter of the Alzheimer's Association in <a href="/topics/Ronkonkoma%2C_NY">Ronkonkoma</a>, is working with the New York State <a href="/topics/Department_of_Health">Department of Health</a> to examine a possible additional level of care for dementia patients. Right now, hospitals and facilities such as nursing homes are unable to care for a dementia patient who exhibits aggression. Instead they are often sent to psychiatric wards. 
Malack-Ragona is also part of the state's Alzheimer's disease coordinating council. The council was formed in response to town-hall forums held by the state <a href="/topics/Department_of_Health">Department of Health</a> last year to assess caregivers' needs. Some issues they are looking into include: increased home health care training, mandated cognitive testing as part of a physical exam, and streamlining the process of Medicaid assistance. 
The Alzheimer's Association estimates 9.9 million people in the United States are unpaid caregivers providing care valued at $94 billion. For families, the cost of caregiving can be devastating. Assisted living and nursing facilities cost $6,000 to $14,000 a month on <a href="/topics/Long_Island%2C_NY">Long Island</a>. 
Keeping a patient at home can run tens of thousands of dollars a year. Medicare pays for limited home services after hospitalization, and many families earn too much to qualify for Medicaid coverage. 
Slow response so far 
Advocates say response to the Alzheimer's crisis on both federal and state levels has been slow. Long-term care and cognitive issues were largely absent from the debates over health care reform, experts say. One of the more ambitious bills that has not been acted on would create an Office of National Alzheimer's Project within the <a href="/topics/White_House">White House</a>, coordinating research and care. 
On <a href="/topics/Long_Island%2C_NY">Long Island</a>, Malack-Ragona is trying to raise money to create an Alzheimer's resource center. The center would include a cafe, recreation area and classroom space for training programs. She hopes to have doctors, lawyers and social workers available. Malack-Ragona said the association has raised $1 million but still needs another $2.5 million. 
Fragmented network 
The eldercare network is still extremely fragmented, said Fred Jenny, executive director of the Long Island Alzheimer's Foundation in <a href="/topics/Port_Washington%2C_NY">Port Washington</a>. Caregivers remain isolated, he said, and often wait for a crisis before reaching out for help. 
"What ultimately happens is the family member can't cope and the person needs to be placed," Jenny said. "We don't have enough nursing home beds and assisted-living beds to take care of everyone who's going to need that care. So we're going to have to put a lot more emphasis on being supportive of the family caregiver and giving them assistance in maintaining their loved one in the community." 
TO READ Newsday's series on Alzheimer's disease and caregivers, and to see photographs and video of the six families profiled in the series, go to newsday.com/<a href="/topics/Alzheimer%27s_Disease">alzheimers</a>. The Web site also contains nearly two dozen articles on various aspects of the disease, a comments section, a link to our <a href="/topics/Facebook_Inc.">Facebook</a> page where people can leave tributes to loved ones and a searchable database of hundreds of local resources and links to Web sites containing more information about Alzheimer's. 
TO FIND help locally, call the Long Island Alzheimer's Foundation at 516-767-6856; the Long Island chapter of the Alzheimer's Association 631-580-5100, or its 24-hour helpline at 800-272-3900; or the Alzheimer's Foundation of America 866-232-8484. 
TO TAKE PART in the Nov. 22 C.A.R.E Day Symposium at the Sid Jacobson Jewish Community Center in <a href="/topics/East_Hills%2C_NY">East Hills</a> - an all-day educational program for professionals in the field of aging and those who are caring for a loved one with dementia - call 516-484-1545. 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-the-henleys-1.1488712">&gt;&gt;PHOTOS: Click here to see the impact of early-onset Alzheimer's on one young LI family, the Henleys </a> 
<a href="http://longisland.newsday.com/projects/alzheimers/">Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more</a> 
<a href="http://longisland.newsday.com/templates/simpleDB/?database=editfeed&amp;table=alzheimers_resources&amp;q="> Click here to search our resource guide for Alzheimer's groups, topics and Web sites</a> 
<a href="http://www.newsday.com/news/health/alzheimers/alzheimer-s-on-long-island-alzheimer-s-a-z-1.1488801"> Click here for Alzheimer's A-Z: Answers to all your questions</a>

ENCARE12

Alzheimer's could overwhelm health care system, experts say

The Numbers 
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An estimated 33 million people worldwide have Alzheimer's disease. Of these, an estimated 5.3 million are in the <a href="/topics/United_States">United States</a>, 330,000 in New York State, and 55,000 on Long Island. Between 5 and 10 percent of these cases are early or young-onset Alzheimer's. These numbers are only the diagnosed cases. 
In the <a href="/topics/United_States">United States</a>, someone is diagnosed with Alzheimer's every 70 seconds. By 2050, there will be an estimated 11 million to 16 million people in the <a href="/topics/United_States">United States</a> suffering from the disease. Alzheimer's is the sixth leading cause of death in the <a href="/topics/United_States">United States</a> and costs the country an estimated $148 billion each year in medical expenses. 
Nationwide, there are 9.9 million unpaid caregivers taking care of Alzheimer's patients. In 2008, these caregivers provided 8.5 billion hours of care valued at $94 billion a year. According to a 2002 study, it costs businesses $36.5 billion in indirect costs for employees taking care of a person with dementia. 
As many as 1.4 million of these caregivers are considered "long-distance" caregivers, living an hour or more away from the patient. 
In 2008, the average cost of home medical care was $144 for an eight-hour day. The average cost of adult day services was $64 a day. The average cost of an assisted living facility was $36,372 a year. The average cost of a nursing facility was between $69,715 to $77,380 a year. 
According to a 2004 study, the average per-person payment that year for health care and long-term-care services for Medicare beneficiaries with Alzheimer's or dementia is $33,007 - three times that of a person without dementia. 
As of 2005, Medicare costs for beneficiaries with dementia was $91 billion. It cost $21 billion in 2005 in state and federal Medicaid costs for nursing home care for those with dementia. 
From a 2009 report of The Alzheimer's Association, 
headquartered in Chicago.

ENFACTS11

On LI, 55,000 reported Alzheimer's patients

Alzheimer's on Long Island: The Garzeros

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