U.S. Health Care System Unprepared for Onslaught of Alzheimer's

Alzheimer's Association
Friday, 15 November 1996

Earl K. Smith had mastered the business world, and expected no major difficulties with the nation's healthcare system. Then his wife, Marilyn, was diagnosed with Alzheimer's disease.

Smith, 65, a former top executive with a Fortune 500 company, took early retirement eight years ago to care for his wife at home. After six years, he moved Marilyn moved into an assisted living facility, where she could get assistance with meal preparation and other activities of daily living. The facility cost Smith $36,000 a year.

When Marilyn's mental and physical deterioration continued, she was moved into a skilled nursing facility. Because this action was deemed "medically necessary," Smith's company medical plan paid for the nursing home. But when Marilyn turned 65, the company plan ceased in favor of Medicare, which does not pay for this type of care for people with Alzheimer's. Smith now pays more than $45,000 per year for his wife's nursing home.

"Paying for care for my wife has been a crazy roller coaster ride," Smith said. "One day I was covered, the next day I wasn't. Sometimes I felt as helpless as she does."

Alzheimer's disease is a health issue that will only grow in coming years, unless checked by research advances. An estimated 7 million Americans will have Alzheimer's disease when the massive baby boom generation reaches age 65, and 14 million will be affected by the middle of the next century.

Yet Alzheimer research is threatened by federal budget cuts. If that happens, discoveries that are right around the corner, with the potential to yield huge savings in health care costs, will be put off and perhaps lost forever, according to Edward Truschke, Alzheimer's Association president and CEO.

"With adequate research funding, we can in coming years develop treatments to prevent many millions of Americans from ever suffering from this disease," Truschke said. "Without those resources, we're going to see millions of Baby Boomers afflicted, their savings emptied, and their spouses and children devastated."

According to Truschke, the U.S. healthcare system is not prepared to handle the onslaught of growing numbers of elderly with debilitating illnesses, such as Alzheimer's disease. Current health care financing provides almost no financial protection for people who face the high cost of caring for someone with Alzheimer's, the most common form of dementia.

"To reduce costs and make the system work better for Alzheimer families, we must break down the arbitrary barriers between health care and social services," Truschke said. "And, we must break down the barriers between acute care and long-term care, to provide people with Alzheimer's the care they need." Recent years have seen an explosive growth in managed care plans delivering health care services to the elderly. According to Truschke, Alzheimer families have reason for concern about managed care, if pressure to keep costs down cuts into needed services. But, programs now in developmental stages can be shaped to provide diagnostic services and treatment for people with Alzheimer's.

"The Association is working with the managed care industry to develop and promote models of effective care for persons with Alzheimer's," Truschke said.

The Association's public policy agenda, as outlined in its 1996 National Public Policy Program to Conquer Alzheimer's Disease, includes the following recommendations:

- Increase the commitment to Alzheimer research

Research is the best hope to delay the onset of the disease and save this country billions of dollars in healthcare costs. Congress should appropriate $350 million for Alzheimer research in 1997. This modest increase of $26 million will help keep pace with inflation and provide support for the most promising avenues of new research.

- Make the healthcare system work for people with Alzheimer's and their families

Certain services, such as case management and caregiver support, are essential to managing Alzheimer's disease. Medicare policies should be clarified to assure that appropriate benefits, including rehabilitation services and diagnostic assessments, are available to beneficiaries with Alzheimer's disease.

- Help families with the high cost of long-term care

People with Alzheimer's must be guaranteed coverage for long-term care under Medicaid. This should include spousal impoverishment protections, an emphasis on community-based care, tax deductions for out-of-pocket long-term care expenses, and uniform standards for private long-term care insurance. In addition, federal nursing home quality standards must be maintained.

"This country must come to terms with the single largest uninsured health care problem in the United States — long-term care," Truschke said. "Families who thought they were financially secure and well insured are quickly bankrupted when Alzheimer's strikes."

The Association will hold its eighth annual public policy forum, "Alzheimer Advocacy: Building the Future," April 20-23, 1996, at the Hyatt Regency Capitol Hill in Washington, DC.

According to Gary Randall, 1996 Forum chair, fighting Alzheimer's must be a joint effort of families, the private and voluntary sectors, and government. The Association is redoubling its effort through its Ronald and Nancy Reagan Research Institute, created in November 1995 to accelerate the discovery and development of treatments and preventions for Alzheimer's disease.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org