Even though nearly 50 million people in the U.S. rely on Medicare to help pay for their health care, millions of older people who have Alzheimer's disease may find that the insurance comes up short when they need it most -- when they need long-term care.
About 5 million Americans on Medicare are living with the life-crippling disease, according to the Alzheimer's Association. For people with Alzheimer's and their families, needs for care typically far exceed the scope of Medicare coverage, leaving them with few options.
The disconnect between coverage and needs are part of the long-term care catastrophe looming for many in the U.S., where the current population of elderly is expected to double to an estimated 88 million by 2050. The Robert Wood Johnson Foundation estimates that only 3 in 10 people ages 65 and older won't need long-term care. And for those afflicted with a disease like Alzheimer's, the need for that kind of care is even more critical.
One possible option to bridge the coverage gap, long-term care insurance, only pays for 12 percent of those costs nationwide. People without long-term care insurance largely look to Medicare to pick up the costs when a disease like Alzheimer's leaves a loved one unable to take care their daily needs.
The problem? Much of the care provided at long-term facilities isn't covered by Medicare.
An Issue of Custodial Care
The basics of Medicare coverage confuse many people. If care isn't deemed "medically necessary," then Medicare won't pay for it, according to Linda Adler, founder and CEO of the patient advocacy group Pathfinders Medical.
"The part that people have a challenge with is understanding what constitutes a medical issue and what constitutes assistance or custodial care," she says. Adler and others who represent patients are seeing growing demand as people, like those with Alzheimer's, are faced with mounting costs, limited resources and often confusing insurance coverage.
Custodial care is often what Alzheimer's patients need most. The nonmedical care -- either at home or in a long-term care facility -- makes day-to-day life more manageable. Medicare doesn't cover assistance with bathing, dressing, eating and preparing meals, changing bed linens and help using the toilet.
Often, in the case of Alzheimer's, a patient will become physically ill and require hospitalization for something like pneumonia or a broken hip. After inpatient treatment at the hospital, Medicare will cover some of the costs for a limited period of skilled nursing and custodial care at a nursing or rehabilitation facility. But when this period, usually 100 days, runs out, the patient is no longer covered.
"There was a time when the family could come together and care for elders at home," Adler says. "But families now are different in many ways, and often when patients are in need of basic care, they are unable to get it from traditionally available sources."
Most families depend on all working-age adults to contribute to the household income, so when a debilitating illness strikes, few can quit their jobs to care for a loved one. With Alzheimer's, however, putting an elderly family member in long-term care -- without the help of long-term care coverage -- can be a near impossibility.
Costs of Alzheimer's Disease
In 2014, costs associated with Alzheimer's care are expected to reach $214 billion, making it the most expensive condition in the country, according to the Alzheimer's Association. The amount needed to provide care for one Alzheimer's patient ranges from $21 an hour for a home health aide to $239 a day for care in a nursing home.
Without insurance coverage for these costs, families can easily go into medical debt. Or they could try to reduce the patient's assets in an effort to qualify for Medicaid, which has more liberal coverage for long-term care of low-income Alzheimer's patients.
Adler says people must consider their options and make plans before it becomes an emergency. Talking with older family members about their wishes before they are incapacitated by a disease like Alzheimer's is crucial.
"People need to understand Medicare, long-term care insurance, the different types of coverage available and the different housing options within their communities," she says.
Waiting for a crisis will only make it more difficult to find the right services when it's crunch time.
"There is a lot of great educational support out there and services that can help you find available senior housing, the right coverage for your needs and other options for additional assistance," Adler says.
Family history may indicate an increased risk of developing Alzheimer's, but there is currently no way to know for certain if your parent, your spouse or you will develop the disease. Planning for the possibility of Alzheimer's may not be near the top of everyone's to-do list, but playing the wait-and-see game could be a costly gamble, particularly if you're counting on Medicare to cover long-term care costs.