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Alzheimer's and the Medicare Mirage
Recent newspaper headlines made it sound like Medicare was finally going to help the millions of families struggling to keep loved ones with Alzheimer's at home. They were wrong.
By Chris Woolston CONSUMER HEALTH INTERACTIVE  In the spring of 2002, families struggling with the devastation of Alzheimer's disease finally got some good news -- or so they thought. Newspapers everywhere carried headlines that seemed to point to a new era in Alzheimer's care. Typical examples included "Medicare OK'd in U.S. for Alzheimer's Disease" and "Medicare Is Now Covering Treatment for Alzheimer's." Families naturally assumed that the government was about to help pay for costly home health aides, nursing care and assisted living, and drug treatments for the disease. When they looked a little deeper, however, many discovered that the new era was essentially a mirage. "Those headlines were misleading and unfortunate," says Ben Lipson, a prominent consumer advocate and author of the book Choosing the Right Long-Term Health Insurance. "They created undue false hope for people who don't understand the Medicare system." In reality, there has been no major upswing in Medicare benefits for Alzheimer's patients who need home health care. In fact, Medicare hasn't changed any of its rules regarding the disease. What happened was that in September 2001, the Centers for Medicare and Medicaid Services (CMS) released a memorandum that clarified the existing rules. Specifically, CMS told insurance contractors that they could not automatically deny coverage for therapy or medical treatments simply because a patient has Alzheimer's. Instead, they have to evaluate each claim on a case-by-case basis. This is a major change for Medicare carriers -- companies that review claims for the government, under federal contract -- because many of them had programmed their computers to simply reject all claims from people with Alzheimer's. Too little coverage until the late stage
This means that Medicare carriers can no longer refuse to pay for, say, a hip replacement or stroke treatment just because someone has Alzheimer's. Medicare prohibited this routine discrimination after two years of lobbying by the Alzheimer's Association and the American Bar Association's Commission on Legal Problems of the Elderly, which had obtained state documents showing that people with Alzheimer's were denied medically necessary services. The new policy bans such software programming and instructs Medicare carriers to include the health industry's numerical code for a health condition (known as an ICD-9) for the patient's particular illness or injury rather than submitting only the ICD-9 code for Alzheimer's disease (331.0). This makes it possible for people with Alzheimer's to actually get reimbursed for medical treatment. The new approach went largely unnoticed by the general public until the New York Times covered the story in late March. A spokesman for the Alzheimer's Association says the clarification in rules was a step in the right direction. In the past, he says, patients with Alzheimer's were often denied coverage for physical therapy, speech therapy, or even medical procedures such as surgery for a broken hip. The thinking that people with Alzheimer's couldn't benefit from treatment is obviously false, he says. Although Alzheimer's is progressive and incurable, experts today agree that patients with the disease really do benefit from therapy and medical care that slow the decline in their functioning, especially in the early stages of the disease. Physical therapy, occupational therapy, and in-home care can help them maintain their way of life and delay the need for a nursing home. Unfortunately, such care is still beyond the reach of most families. According to the Alzheimer's Association spokesman, there remain "huge gaps in the coverage." For example, Medicare will pay for a home health aide only if the patient is "homebound" and requires physical therapy, speech therapy, or regular skilled nursing care. What the Medicare rules fail to acknowledge is that in the early and middle stages of the disease, few Alzheimer's patients require skilled nursing care. They need someone to help prepare food, help them bathe, ensure that they don't get lost during a neighborhood stroll; eventually, someone will have to feed and clothe them -- all activities that would allow them to remain at home rather than in a nursing facility. Nonetheless, the agency will not pay for the simple day-to-day supervision that the vast majority of Alzheimer's patients require. What's covered, what's not
While the change in policy will make it easier for Alzheimer's patients to obtain medical treatment, Medicare still does not cover adult day care, 24-hour personal care in the home, room and board in an assisted living facility, or "custodial" care in a nursing home, according to Leslie Fried of the ABA/Alzheimer's Association Medicare Advocacy Project. Here is a closer look at what Medicare will and will not pay for. A more detailed explanation of benefits is available at the Alzheimer's Association website: | • | Evaluation and diagnosis. These are covered under the Medicare part B program. After a $100 deductible, Medicare will pay 80 percent of the doctor's bills.
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| • | Doctors' visits for treatment of Alzheimer's. Again, Medicare will pay 80 percent of doctor's bills after a $100 deductible. You should know that some doctors use an outdated code for Alzheimer's when filling out insurance forms. If the code is 290 (which stands for pre-senile dementia) instead of 331 (Alzheimer's disease), Medicare will only cover half of the doctor's bills. If you suspect there's been a mistake, check with your doctor.
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| • | Psychiatrists, psychologists, and social workers. In general, Medicare will not cover counseling or other mental health treatments for Alzheimer's disease. However, it will pay half of the cost of treating certain psychological conditions that strike many Alzheimer's patients, such as depression, agitation, and aggression.
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| • | Prescription drug therapy. All Medicare drug plans are required to have at least two cholinesterase inhibitors and the drug memantine on their list of covered drugs. Cholinesterase inhibitors boost the levels of brain chemicals involved in memory, judgment and other mental processes. Memantine regulates brain chemicals used in processing, storing and retrieving information. Plans may differ on the copays they require for the drugs, and some plans may require that a patient get prior approval before filling a prescription for a drug.
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| • | Physical therapy. Medicare will pay for physical therapy as long as it is "reasonable and necessary." In order to meet that standard, the therapy has to be a part of a written treatment plan. It also has to come from a skilled therapist, not a standard home health care aide. If Medicare decides that the therapy is no longer helping, coverage can be cut off. If this happens, have a talk with the doctor. If he or she still sees some benefit in therapy, you can appeal.
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| • | Home health care. As previously mentioned, Medicare will only pay for skilled nursing care. Medicare will not pay home health workers who help patients with day-to-day tasks such as cooking, bathing, and dressing, which is exactly what most Alzheimer's patients need to keep them out of a nursing home.
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The program also won't cover home care for any patients who aren't confined to their homes. (Of course, many people with Alzheimer's require care and supervision long before they become housebound.) Medicare is, however, a little flexible in its definition of housebound. If it takes a "considerable and taxing" effort for a person to leave the house, he or she can still qualify for benefits. | • | Hospice. Medicare does cover hospice care for anyone expected to die within six months. Hospice coverage is much more inclusive than regular coverage. Among other things, it will pay for doctors' services, nursing, various forms of therapy, home health aides, counseling, and even prescription drugs.
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In short, don't count on Medicare to cover the costs of caring for your loved one. "Many people grossly overestimate the benefits of Medicare until they have to access it," Lipson says. Families who don't already have long-term health care insurance and can't afford round-the-clock nursing -- in other words, most families -- frequently have to take on caregiving duties themselves, he says. "We have 27 million informal caregivers in this country," he says. "They have to interrupt their own lives and lose their job income." Meanwhile, the Alzheimer's Association and many family members of people with the disease continue to push for expanded Medicare coverage of Alzheimer's disease. The association believes that increased coverage of home-based care could actually save money in the long run by delaying the need for nursing homes. For families of Alzheimer's patients, that would be a real piece of good news. -- Chris Woolston, MS, is a health and medical writer with a master's degree in biology. He is a contributing editor at Consumer Health Interactive, and was a staff writer at Hippocrates, a magazine for physicians. He has also covered science issues for Time Inc. Health, WebMD, and the Chronicle of Higher Education. His reporting on occupational health recently earned an award from the northern California Society of Professional Journalists.
References
Interview with Ben Lipson, a consumer advocate and author of Choosing the Right Long-Term Health Insurance.
Interview with Alzheimer's Association spokesman, who requested anonymity.
Alzheimer's Association. Frequently asked questions about fee-for-service Medicare. February 2002. www.alz.org/involved/advocacy/med-faq.htm
Medicare. Has Medicare's coverage for people with Alzheimer's disease changed? http://medicare.custhelp.com/cgi-bin/medicare.cfg/php/enduser
Medical Review of Services for Patients with Dementia: Change Request 1793. Program Memorandum Intermediaries/Carriers, Department of Health and Human Services (DHHS); Centers for Medicare and Medicaid Services (CMS). Transmittal AB-01-135, September 25, 2001. Fact Sheet About Recent Change Affecting Medicare Coverage. ABA/ALzheimer's Association Medicare Advocacy Project.
Important things to consider when choosing a Medicare drug plan for people with Alzheimer's disease. Alzheimer's Association Fact Sheet. Updated November 2006
FDA-approved cholinesterase inhibitors. Alzheimer's Association Fact Sheet. Updated October 16, 2006
Memantine (Namenda). Alzheimer's Association Fact Sheet. Updated January 10, 2006.
Reviewed by Michael Potter, M.D., an attending physician and associate clinical professor at the University of California, San Francisco. He is board-certified in family practice.
Our reviewers are members of Consumer Health Interactive's medical advisory board.
To learn more about our writers and editors, click here.
First published June 27, 2002
Last updated March 17, 2008
Copyright © 2002 Consumer Health Interactive
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