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 United States, 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 United States 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.
"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 National Institutes of Health 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 United States. Since 2004, members of both the House and Senate 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. Peter Davies, 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 United States 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."
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