The health of the caregiver
Also included in that amount is the increased price caregivers pay for their own health care. On average, caregivers spend 8 percent more on health care than non-caregivers — about $800 more per year, says Brent Fulton, an economist at the University of California, Berkeley, and a coauthor of the Shriver Report. The health effects of stress could be to blame. Half of all female caregivers report emotional and physical stress related to responsibilities to their loved ones with Alzheimer's, and two out of three female caregivers say they are scared that they, too, will someday develop dementia, according to the Shriver Report.
Seeing Alzheimer's up close — both the disease and its effect on loved ones — has left McCormack with a fear of the disease so strong that she knows what she'll do if she ever exhibits symptoms. "I'm hoarding my [pain] pills," McCormack says. "And if I ever think I'm getting Alzheimer's, I'm taking them. That's how serious it is. I would never put my daughter through this. Never. It has been the worst experience of my life."
Alzheimer's sticker shock
The cost of caring for someone with Alzheimer's disease hits caregivers like an aftershock. Most caregivers are unprepared for the financial realities of long-term care, according to a recent AARP study, "Planning for Long-Term Care: A Survey of Midlife and Older Women." More than half of women haven't planned for their long-term care needs, and 40 percent don't know what long-term care entails. And only one in four women is aware that Medicare does not cover these services. So the diagnosis is bad enough, but then they have to start at square one to figure out how to provide care in the case of a disease whose effects worsen steadily over time.
In the beginning, medication is the only treatment required, and that's usually covered by Medicare Part D or supplemental insurance. But as Alzheimer's worsens, the problems often aren't medical. When mom can no longer bathe herself, or dad starts wandering at night, there's no prescription to write or test to perform — and therefore no Medicare coverage.
"Medicare basically provides funding for health care," says John Bowblis, Ph.D., an economics professor specializing in health care policy at the Farmer School of Business at Miami University in Ohio. "If you think about dementia care, dementia is not health care. It's dealing with activities of daily living: bathing, clothing. And at this point you basically only have two options. One is to go with informal care, where a family member takes care of the person. Or, using your own private funds, you hire someone to also watch the person with dementia."
This reality shocks many caregivers and patients alike. As well as this: Home health aides cost an average of $21 an hour, and assisted living facilities charge on average $38,000 a year, according to the MetLife Mature Market Institute. Neither cost is routinely covered by Medicare as long-term care.
"I think so many people think about how much money they're going to accumulate when they're working, and then how do they spread it out," says Sandra Timmermann, director of the MetLife Mature Market Institute. "They often forget about the risk involved of health care costs, in particular long-term care costs."
Many Alzheimer's patients would benefit from the assisted living model, where they live independently in an apartment community and get assistance with meals, housekeeping and some personal care. But it's largely a private-pay industry, says R. Tamara Konetzka, an expert on aging and health policy at the University of Chicago. "It's a great option for people who can afford it. But there is a large segment of the population that needs that level of care that can't afford private assisted living. And so there is this big hole."
Medicaid will cover nursing home care, adult day care and, in a few cases, assisted living, says Bowblis. But that's only once the patient's assets amount to $2,000 or less (the home is generally not included if the spouse or other relatives live there). So by the time an Alzheimer's patient receives assistance with care, his or her assets have been depleted, and in many cases caregivers, too, are feeling the financial pinch.