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Alzheimer's Caregivers Suffer Crossed Wires

Family members often miss doctors' messages, survey says

THURSDAY, June 7 (HealthScout) -- The doctor is talking, but do you know what she's saying? If the subject is Alzheimer's disease, the answer probably is no.

Alzheimer's advocates say a new survey reveals a "huge communications gap" between what primary-care doctors tell family caregivers of Alzheimer's patients and what those loved ones are hearing.

The telephone survey shows that while most doctors say they're forthcoming with information about the course of Alzheimer's and the treatment options, most caregivers say they're not getting the information.

Judy Riggs of the Alzheimer's Association, which commissioned the survey, says the problem isn't lack of instruction. Instead, she says many caregivers appear to be suffering from information overload.

"When you get a diagnosis of Alzheimer's disease, it's like getting hit by a Mack truck. It's unrealistic to think that people are able to receive and absorb everything they need to know at one time," Riggs says.

Caregivers would be better served if doctors were able to ration their advice like pills, she says. "What we are suggesting is that information is like medication: It has to be dosed. People need to get the right amount at the right time."

She says that means a diagnosis of Alzheimer's disease should be merely the first phase of an ongoing relationship between the doctor and the caregivers. "Physicians need to be taught how to manage the new relationship and help families understand what to expect" as the disease runs its course, she says.

The Alzheimer's Association estimates that 4 million Americans now suffer from the disease. As the population ages, that number is expected to swell to 14 million by the year 2050. The association says 19 million Americans report a family member with Alzheimer's, and 37 million say they know someone with the disease.

The new survey was reported today at a meeting of the American Medical Association (AMA) in New York City. At the meeting, the AMA also announced new guidelines to help doctors better identify people over-stressed by the demands of caring for Alzheimer's patients and to improve communication with caregivers.

The need for doctors who treat Alzheimer's patients to take more time with the patients' family members is critical, says Pamela Saunders, a Georgetown University researcher who has examined patient-provider communication in Alzheimer's cases.

"Whether it's realistic or not, we need to try to do it. Doctors and patients have disparate goals, and we have to find a way to get this information across," Saunders says.

The survey, conducted by Roper Starch Worldwide, involved interviews with 500 geriatric specialists and 376 Alzheimer family caregivers. While 91 percent of doctors said they talked with caregivers about Alzheimer's medications and what to expect from them, 42 percent of the caregivers said they didn't hear that.

Eighty-four percent of doctors said they told caregivers what to expect as the disease progressed, but only 37 percent of caregivers said they received the briefing. Nearly 100 percent of doctors surveyed said they gave specific recommendations to caregivers about how to perform their new roles, but only 59 percent of caregivers said they were given such advice. And while 81 percent of doctors said they gave tips on how to manage the troubling behavior of Alzheimer's patients, only 23 percent of caregivers said they received the information.

The survey was sponsored by Janssen Pharmaceutica and Ortho-McNeil Pharmaceutical, which co-market the dementia drug Reminyl.

Marilyn Yager, executive director of the Kenneth B. Schwartz Center, a Boston group that studies doctor-patient communication issues, says the results "may be slightly worse than we expected, but they're not necessarily surprising."

"We think the situation is pretty bad. We know that how doctors and nurses perceive the communication with patients is different from the way patients perceive it," even among the best-intentioned providers, Yager says.

What's crucial to determine is why the words that left the doctors' lips entered caregivers' ears so wide of their mark, she says. "What was it about how they communicated? It could be everything from the words they used to body language," both of which can influence how a person interprets a message, Yager says.

She says it's also possible that caregivers don't know enough to be able to listen to and understand their doctors. "There's a lot of variables we still need to look at."

What To Do

If you're caring for someone with Alzheimer's disease, and you don't feel your visits to the doctor are as informative as they could be, Saunders offers these tips: Always go with a written list of questions and highlight one or two of them in case the doctor's pressed for time.

You also should ask for advice in writing on, say, a prescription sheet. Try to get the names of organizations that offer support and counseling for Alzheimer's caregivers so you can turn to them when you can't reach your doctor. And see if your doctor will communicate with you by e-mail, since that might make things easier, Saunders says.

For more on Alzheimer's disease and how to cope with it, visit the Alzheimer's Association. Alzheimer's Disease International also has information for caregivers.

If you're interested in seeing what clinical trials are available, take a look at Veritas Medicine.

SOURCES: Interviews with Judy Riggs, deputy vice president for public policy and programs, Alzheimer's Association, Chicago; Pamela A. Saunders, Ph.D., assistant research professor, Georgetown University Medical School, Washington, D.C., and Marilyn Yager, executive director, Kenneth B. Schwartz Center, Boston
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