Alzheimer's doctors, caregivers not on same page

By Susan Deutchman Lilly
CNN Medical Unit

NEW YORK (CNN) -- There's an apparent communication gap between people who care for Alzheimer's patients and the patients' doctors, a new survey finds.

Results from the telephone survey conducted by the Alzheimer's Association were released at an American Medical Association briefing Thursday morning in New York.

It found that people who care for Alzheimer's patients often underestimate how much they need to know about the disease. Moreover, important information about the disease apparently isn't getting through to many caregivers.

For instance, 57 percent of caregivers in the survey said they want information about what to expect as the disease progresses, but only 38 percent said the doctor provided that information.

Among doctors, however, 83 percent said they provided information about how the disease would progress, and 84 percent said caregivers wanted such information.

In another illustration, 52 percent of caregivers reported they want to know how the disease will impact the patient's ability to do daily tasks and how to cope, but only 28 percent report getting this guidance from the doctor.

Again, 88 percent of doctors said caregivers want the information and 90 percent said they provide it.

The findings are based on telephone interviews conducted this year with 376 caregivers who have a family member, relative or close friend with Alzheimer's disease and 500 primary care physicians.

The American Medical Association also announced a new caregivers' assessment questionnaire to help deal with stresses associated with being a caregiver.

The questionnaire is designed to help identify caregivers at risk by helping them analyze their own behavior and health risks so that, with their physician, they can make the best decisions to benefit themselves and the Alzheimer's patient.

Alzheimer's affects more than 18 million people worldwide. There is no cure for the disease, which causes dementia and confusion and eventually leads to death.