Editorial
EDITORIAL: Take Alzheimer's tsunami seriously
For two years, Newsday reporter Denise Bonilla and photographer J. Conrad Williams Jr. followed the lives of six families caring for loved ones suffering from Alzheimer's. Their stories and images were a wake-up call to Long Islanders that an Alzheimer's tsunami is fast approaching.
This tidal wave threatens to afflict tens of thousands of families, tripling the number of Alzheimer's cases in coming decades - a dismal forecast that only research can slow or halt. With medical breakthroughs, there's hope. But what those afflicted most require is the selfless love of caregivers.
There's no better example than Dorla Walker's love for her 82-year-old father, Thomas Rowe. She has taken him into her Baldwin home to bathe, feed and change, though he often acts aggressively - as many Alzheimer's patients do as the disease progresses. Largely because of this behavior, Rowe has been in and out of nursing homes - 33, by his daughter's count, in the past six years. At the last one, Walker says, they would not bathe him.
This revolving-door of care often becomes a "journey of grief." That's the term used by Barbara Vogel at Zucker Hillside Geriatric Center in Glen Oaks. Families mourn every time they see another decline.
The journey also threatens to crush the health care system, as caregivers struggle to tend to afflicted loved ones at home, where 70 percent of Alzheimer's patients receive care.
That's certainly the case on Long Island, where 55,000 patients suffer from this degenerative, fatal disease. Nationally, the number of Alzheimer's cases is expected to grow from 5.3 million to 16 million during the next 40 years. The health care costs are already reaching $100 billion a year.
Yet as the Alzheimer's Study Group recently reported to Congress: "Without a means of prevention, better treatment or cure, Alzheimer's disease is projected to afflict 10 million Americans from the Baby Boom generation and contribute cumulative costs of almost $20 trillion to Medicare and Medicaid between 2010 and 2050."
Twenty trillion dollars - a mind numbing number, equivalent to 25 stimulus bills - in 40 years. And that estimate doesn't begin to calculate the costs to families. They have few options, because Medicare does not provide long-term institutional care. Medicaid covers nursing-home care, but only for the poor.
Health care reform legislation moving in Congress won't change that, but some provisions for long-term health insurance under debate hold great promise for at-home caregivers. In the bills recently approved in the House and about to be debated in the Senate, affordable long-term care insurance would be provided through the Community Living Assistance Services and Supports Act, an idea promoted by the late Sen. Edward Kennedy (D-Mass.). Through this program, workers would purchase affordable government insurance for long-term care through payroll deductions, eventually providing them benefits of $50 to $75 a day to help pay for home-care aides, meal services and visiting nurses. Critics argue, however, that the CLASS Act would enable too many young people to opt out, eventually creating a massive unfunded liability.
More important would be a huge increase in federal funding for Alzheimer's research. Research promises to be the most cost-effective weapon to slow the advance or to stop the spread of this disease. The Alzheimer's Study Group notes that for every dollar the federal government spends on the costs of Alzheimer's care, it invests less than a penny to find a cure.
Changing that ratio is the aim of the Alzheimer's Breakthrough Act, which would increase federal National Institutes of Health funding to $2 billion a year, up from about $428 million. That's vitally needed.
Peter Davies, director of the Litwin-Zucker Center for Research in Alzheimer's Disease and Memory Disorders in Manhasset, says there are hundreds of clinical trials going on right now to test new drugs, many using new knowledge of brain chemistry to target toxic proteins suspected of killing nerve cells. An encouraging example comes from Cold Spring Harbor Laboratory, where a team of researchers led by Hiro Furukawa used the light-source technology of Brookhaven National Laboratory to identify the molecular structure of a crystallized protein associated with Alzheimer's. The discovery can help researchers better target this toxic protein.
Though these research developments are promising, caregivers need more support now. For them, resources are in short supply.
Adult day care facilities - places where family caregivers can bring patients for part of the day and get relief to rest or to run errands - are in particular demand. But due to inadequate funding, such centers closed recently in Amityville and Levittown. The Long Island Alzheimer's Association is searching for a site for a new adult day care center near Ronkonkoma, thanks to a $1-million gift.
Meanwhile, families caring for Alzheimer's patients at home need more trained professionals to support them. Home health aides and companions are all in short supply.
Legislation recently introduced by Sen. Kirsten Gillibrand (D-N.Y.) could make a difference. Her Alzheimer's Treatment and Caregiver Support Act would provide federal grants to public and nonprofit organizations to improve patient treatment services and support services for caregivers, and would use federal dollars to extend hours of adult day care.
Also needed are better neighborhood support systems, such as Project Independence, which was established in New Hyde Park by the Town of North Hempstead. Project Independence assists seniors aging at home, whether or not they are suffering from Alzheimer's, coordinating weekly medical visits, meal services, arranging transportation, visiting nurses and even providing advice about home repairs. Recently, Hunt-ington decided to provide similar services to Greenlawn neighborhoods the town identified as a "naturally occurring retirement community." Many more such neighborhood support systems are vitally needed.
More research dollars, more resources for caregivers, affordable long-term care insurance - all will be required to deflect this tidal wave of misery. While it's one thing to admire the selfless love of caregivers like Dorla Walker, we must also respond to how desperately they need our help. hN
