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Up the Money Spent on Alzheimer’s Research
By Saul Freidman, Newsday.com
February 14, 2009
One of our greatest fears as we age is the fear of losing our minds. That's what compelled me to find a computer the day I began rehabilitation after a stroke six years ago, to test myself on "Free Cell" solitaire. I've been doing that ever since.
So it must be that a most fearsome sickness that comes with age is Alzheimer's disease, an incurable and mysterious thief that slowly and inexorably tangles the brain, steals the mind and eventually kills millions of men and women.
This is an appropriate time to visit this subject, for the Alzheimer's Association next month will hold conferences in Washington and on Long Island, where I'm scheduled to be a speaker. The goal is to teach more about the disease, provide information updates and to urge the new Congress and the Obama administration to understand better and pay more attention to the consequences of this plague that is affecting maybe 5 million people.
I say "maybe" because we don't know how many people are affected, since it can take 10 years for the disease to become evident. Often a conclusive diagnosis of Alzheimer's must await an autopsy. Even now, 25 years or so later, I wonder if President Ronald Reagan's moments of forgetfulness when I was a White House reporter were a sign of Alzheimer's.
Scientists know that the disease involves progressive brain cell failure, but they don't know why. What is known, according to the Alzheimer's Association, is that, while it may occur in relatively young people and that genetics may play a part, "the greatest known risk factor is increasing age. Most individuals with the disease are 65 or older." The likelihood of developing Alzheimer's after age 85 is 50 percent.
Aside from the millions of personal and family tragedies now being played out, we're facing a possible national epidemic of invalidism as 78 million boomers age. Alzheimer's patients often need years of nursing care for even the most basic activities of daily living. If no cure or treatment is found, the Alzheimer's Association estimates that 10 million boomers will be affected, and more than 13 million Alzheimer's patients will need care by 2050.
The United States does not have an accessible and affordable long-term care program. Medicare does not pay for extended nursing care. Few have or can afford long-term care insurance, which you cannot get in the early stages of the disease. There is only the underfunded and highly restrictive Medicaid program that requires a person to become impoverished to get into a nursing home, or get home care.
Thus, loved ones carry the greater burden in caring and paying for the care of Alzheimer's patients. Inadequate as it is for Alzheimer's victims, Medicare is spending $40 billion a year on providing them with medical care; that will grow. And Medicaid spending for Alzheimer's patients is expected to reach $30 billion annually in a few years.
Much of this cost and the tragedies for its victims and their loved ones may be ameliorated if research into the causes and possible treatment of Alzheimer's gets more support. Progress has been made in understanding how the disease progresses and there are treatments that can slow the process. But the mysteries remain: Why does it happen and how can the course of the disease be stopped?
The federal government now spends about $640 million a year on Alzheimer's research. The Alzheimer's Association has been seeking at least $1 billion, about the same amount available for breast cancer research. Thus, the Alzheimer's Association will host its Public Policy Forum March 23-25 in Washington to lobby for more funds to support research and to urge President Barack Obama to make finding a cure a national priority.
The Washington conference also will include sessions on necessary changes in health care and the latest in research advances. Attendees will meet with members of Congress, and a candlelight vigil will be held at the Lincoln Memorial to call attention to this disease.
The Alzheimer's Association of Long Island's conference at the Melville Marriott on March 5 is expected to focus on care giving, Social Security and other financial and legal issues for patients.
The National Institute on Aging, which is part of the National Institutes of Health, has a helpful Web site with everything you'd want to know about the disease at www.nia.nih.gov/alzheimers. Find state-by-state Alzheimer's Associations at alz.org. For Long Island, visit alz.org/longisland.
One thing more: On this, the 13th anniversary of this column, I offer my free, updated list of resources, Web sites and phone numbers for older Americans.
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