A new study, conducted by the American Alzheimer’s Association, shows that many general practitioners are reluctant to tell their patients that they have Alzheimer’s disease, when the diagnosis is established. When the researchers asked people treated for this disease if their general practitioner had informed them as soon as they were diagnosed, 45% of them answered in the negative. In comparison, 90% of people with one of the main cancers (breast, colorectal, lung and prostate cancer) said they were informed as soon as they were diagnosed.
A scary disease
“With Alzheimer’s disease, it’s like we’re back in the 70s, in doctors’ offices,” said Beth Kallmyer, vice president of the Alzheimer’s Association. “At the time, the word cancer was taboo and we didn’t talk about it at the doctor’s or at home. It has changed a lot since then, but now it’s Alzheimer’s disease that is scary”.
To justify their reluctance to state the diagnosis of the disease, doctors cite the fear of causing emotional distress in their patients as well as the lack of time and resources to fully explain what the diagnosis means. They often wait until the disease is more advanced and the signs are obvious to start talking to their patients about it.
“Of course, we are pleading for more transparency in practices, but I understand the fears of some colleagues because it is easy to put a label on a disease. The patient will say to himself, “I have Alzheimer’s disease, so what is the point of following a treatment. Might as well look for a care center right away,” says Dr. Robert Wergin, president of the American Academy of Family Physicians.
What the Alzheimer’s Association regrets, which stresses: “Patients have the right to know that they have this progressive and fatal brain disease. Telling the person with Alzheimer’s the truth about their diagnosis should be normal practice. would also allow these patients to participate, if they wish, in clinical trials, which relate to the beginnings of the disease.
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