As elder law attorneys, we see a lot of clients and families who are concerned about Alzheimer's. When a family member has Alzheimer's, it can be all-consuming, between providing care for the patient, trying to care for one's own family, and working to pay for family needs. Because dealing with Alzheimer's in one's own family is so overwhelming, it's easy to not think about the toll that the disease is taking on the nation as a whole.
On January 27, 2017, PBS aired a special called "Alzheimer's: Every Minute Counts." The title refers not only to how precious time is with our loved ones as they slip further into this disease, but to the urgency of finding a cure.
Alzheimer's disease is a degenerative brain disease which gradually steals memory and eventually destroys all ability to function. Every sixty seconds in the United States, and every four seconds around the world, a person is diagnosed with Alzheimer's. Thus begins a journey for the patient and their family that may last for years, in which only the ending is certain.
The PBS film explores the experiences of three families dealing with Alzheimer's, interspersed with commentary from health care workers, elder law attorneys, economists, and other professionals dealing with the rapidly increasing number of Alzheimer's cases.
Much of the film is set in Florida. In part because it is a favored retirement destination, Florida is the epicenter of the Alzheimer's epidemic. The state expects to have as many as 750,000 cases in the next 15 years. "Memory care" residences in the Tampa area average $4,000-$6,000 per month or more. Many families are surprised to learn that private health insurance and Medicare do not cover this and other types of long-term care. The cost of care may seem high, but is unsurprising when you factor in the cost of living space, utilities, meals, and the level of nursing care and support this population needs.
Patients often must "spend down" their assets in order to pay for nursing home care. Eventually, they will qualify for Medicaid, but the process is rarely smooth without careful planning.
What frequently happens is that patients must "spend down" their assets in order to pay for nursing home care. Eventually, they will qualify for Medicaid to pay for their care costs. Unfortunately, this process is often not a smooth one. Medicaid may not cover the entire cost of the memory care residences that are ideal for Alzheimer's patients. That means that either families must come up with the difference, or must find their patient a less expensive long-term residence that likely offers less support.
There is another potential problem, too: Medicaid is a federally funded program, administered by the states, and paid for by taxpayer dollars. As such, it is a finite resource. Because more and more people need and qualify for Medicaid, there may be a wait to receive benefits—in some cases as long as five years. If a long-term care resident's Medicaid doesn't come through before her family's resources run out, again, she may have to leave her residence.
Medicaid limitations don't only affect patients and their families. Florida's spending on Alzheimer's has increased 600% since 2006. This has created a strain on the state's budget that will only get worse as the Baby Boomer generation continues to age. It's reasonable to believe that other states are feeling similar budgetary pain.
The cost of medical care (not nursing home care) is another significant economic concern. There is no treatment for Alzheimer's, and many patients end up in the emergency room for conditions or injuries that may or may not be related to the disease. Because Alzheimer's patients often cannot clearly communicate their symptoms and medical history, it's usually necessary to run more medical tests to diagnose their current problem than other patients must undergo. Obviously, this is costly to families, insurers, and hospitals.
People with Alzheimer's are admitted to hospitals twice as often as people the same age who do not have Alzheimer's. In addition, they stay in the hospital longer and are readmitted more frequently.
People with Alzheimer's are also admitted to hospitals twice as often as people the same age who do not have Alzheimer's. The cost for their admissions is almost three times as high, largely because of the increased need for medical tests. In addition, Alzheimer's patients stay in the hospital longer and are readmitted more frequently than those without the disease. According to a professional in the PBS film, currently one in five Medicaid dollars goes to pay for medical care for Alzheimer's patients. That number is projected to rise to one in three dollars.
Medical concerns go beyond just the care of Alzheimer's patients. The stress of caregiving can cause medical issues that send family members to the hospital. If they are admitted, the Alzheimer's patient may need to be admitted as well, just so they will be cared for.
The stress of caregiving manifests in other ways as well. With no other options for respite care, some families resort to "granny dumping:" dropping the Alzheimer's patient off at the ER and leaving, forcing the hospital to do a "social admit" because the family has disappeared and the hospital can't safely discharge the patient. Medicare does not reimburse for these admissions. And while it may seem despicable that family members would drop a helpless patient off at a hospital just to get a break for a few days or a week, it speaks to how overwhelming and exhausting caring for someone with Alzheimer's can be.
The experts in the film were united in their conclusion that unless something changes, the financial costs of Alzheimer's will cripple the healthcare economy and the U.S. economy in general. It is worth noting that compared to other major diseases, Alzheimer's receives significantly less federal funding for research. Deaths are down from breast cancer, prostate cancer, HIV/AIDS and heart disease, which receive more generous federal funding. Deaths from Alzheimer's, by contrast, are up 71% since 2000. Much more research, and billions of dollars, are needed to eradicate this disease.
Alzheimer's touches most families. If yours is not yet one of them, you're fortunate—but you can't count on your luck holding forever. Contact an experienced Michigan elder law attorney to discuss planning for whatever the future may hold.
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