Toward a solution
"Long-term care is arguably the largest unfunded health-related need we have in this country," says Konetzka. "There's just no universal way to fund this. And so we end up with a patchwork that varies from state to state."
But moves to alleviate this problem are in the works.
The Community Living Assistance Services and Supports (CLASS) Act, passed as part of health care reform, would set up a long-term insurance program funded by premiums voluntarily deducted from worker's paychecks. The program would cover a variety of services meant to keep people living independently, from in-home help with activities of daily living to respite care for caregivers. But that program won't start until October 2013.
Long-term care insurance, available for purchase on the open market, could help bridge the gap for the growing numbers of families that will be coping with an Alzheimer's diagnosis, as the number of people over age 65 affected by Alzheimer's is expected to reach up to 16 million by 2050. However, only 7 million Americans now opt for long-term care coverage, according to the Shriver Report.
One of the problems with long-term insurance is that to qualify for coverage, you need to apply long before you need it, says Timmermann. "Obviously you can look to long-term care insurance, but the person who purchases it has to be in good health to pass underwriting," she says.
Another idea often brought up, Konetzka says, is compensating informal caregivers for at least some of the $150 billion in uncompensated assistance provided annually to Alzheimer's patients. Caring for people with early stages of dementia in the community costs less than providing them institutionalized care, such as in assisted living. So in theory, providing the support to keep people in the community longer would save Medicaid money in the long run.
"We rely on informal caregivers to hold these costs down," says Konetzka. "And people prefer to be taken care of by a loved one. So there is a lot more we could be doing to support them."
Payments would theoretically help ease the burden on the 20 percent of caregivers who had to take a leave of absence from their jobs to attend to their loved ones, the 10 percent who lost job benefits, and the 8 percent who chose early retirement because of their responsibilities, according to the Shriver Report.
Other ideas include giving caregivers more support services, such as easier access to adult day care so they can remain in the workforce longer.
"We assume that it's better to be taken care of by informal caregivers, but they often don't have the training they need to know what they are supposed to do in certain situations," Konetzka says. "And then there are things like respite care so that caregivers can have a few days off if they are reaching the end of their capacity and need a break."
Unfortunately, none of these solutions will help McCormack, who is dealing with the challenges of her own age and health status as well. Her mother, now 91, is living in a nursing home in Buffalo. The severe weather forced McCormack, who has had four knee-replacement surgeries, to move back to California for her own health. It's been months since she's seen her mother, and until her mother's house sells there will be no money for her to fly out to visit.
And while the financial cost has been substantial, it's the emotional cost that has been Alzheimer's true toll on McCormack.
"She's alone," McCormack says. "She's halfway around the country. I grieve for my mother who is still alive."
Cynthia Ramnarace, from Rockaway Beach, N.Y., writes about health and families.