"The physical exam and the X-ray and the meds, all of which don't have a big impact on preserving a person's independence, are the things that are paid for by insurance, while things like talking and counseling tend to be discounted, and so they're not covered," Kennedy said.
The disease is particularly hard on caregivers, he said, because of behavior changes that often accompany the person's memory problems.
"If people with the illness become aggressive, or they try to push their family members away, or they become so agitated that they can't sleep at night, these are the kinds of issues that can make it very hard for family members to cope," Kennedy said.
Another caregiving expert said that people need to know what their limits are and what they're good at and then share the responsibilities of care so that no one person shoulders the entire burden.
"Maybe one adult child is good with numbers and can handle the finances, while the other can visit Mom two or three times a week," said Kym Hance, director of client and community services at Home Helpers and Direct Link in Saratoga Springs, N.Y. "You don't want people to get to the point where they're so burned out they can't handle it anymore."
A valuable resource for caregivers, Kallmyer said, is the Alzheimer's Association's 24/7 Helpline (800-272-3900). "We average around a quarter-million calls a year, but with 15 million caregivers out there, we aren't as well known as we'd like to be," she said.
More than 30 drugs currently in clinical trials are aimed at slowing or stopping the progression of the disease, Thies noted. But the earliest any of these drugs could be on the market is four to five years from now, and it might end up being closer to 10 or 12 years.
In the meantime, he said, the government needs to significantly increase its level of funding for
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