By STEPHEN NOHLGREN
© St. Petersburg Times, published June 8, 2001
It's hard to imagine a scarier diagnosis a doctor can give a patient than Alzheimer's disease. There's no curing it. The patient and their families are doomed to a miserable, lonely decline.
Ideally, the awful message gets delivered with the best bedside manner a doctor can muster, with lots of information, so families can accept their new lot and begin to move on.
Unfortunately, families say, that rarely happens. A study released Thursday by the National Alzheimer's Association demonstrates a yawning gap of communication between doctors and patients when it comes to breaking the bad news.
Doctors say they are providing the information patients need. Patients say they aren't getting it:
Only 38 percent of families surveyed said their doctor told them what to expect from the disease. But 83 percent of doctors said they provided that information.
Four caregivers out of 10 said they received adequate information about medication. Nine doctors out of 10 said they gave it.
One patient out of five said they were told about support groups. Three-quarters of doctors said they passed along the word.
Patients may be in such shock that they simply don't absorb what their doctors are telling them, said Orien Reid, chairwoman of the association. Doctors should elicit questions from families to make sure they understand, and should repeat important information on follow-up visits.
"It's important for physicians to think of this as a long-term relationship that they are going to have with the family," Orien said. People need to know about medication, finances, behavior management, driving and other issues that can't be effectively crammed into that first, upsetting session. Dr. Richard Orlan, a Largo geriatrician, said he usually blocks out 30 minutes to break a diagnosis. Patients and families need to know about diet, medication, life-style changes and community resources.
But such discussions don't come easily to doctors, Orlan said.
"When doctors train, they want to do things where they can make an intervention and cure somebody," Orlan said. "This is a death sentence. This is like an oncologist telling someone they have cancer and he can't fix it."
The Alzheimer's Association's Tampa Bay chapter offers educational materials, counseling, support groups and some financial assistance to people with dementia and their families. About 100,000 people in the Tampa Bay area suffer from dementia.
"This is not a one-time process but must be an ongoing communication throughout the course of the disease," said executive director Gloria Smith. "Doctors and families don't have to go through this alone."
-- For more information, call the Alzheimer's Association at 800-772-8672.