Bring Dementia Out of the Shadows of Stigma

John was in great shape and very articulate about his situation. Indeed, it was one of the few times in my over 25 years of working with this disease that I have encountered anyone who was so aware of his own diagnosis. But as we talked for the next hour about the disease, his apprehensions and his fear of becoming incapacitated, it was clear he was scared. He was also angry, saying, “My physician just told me one minute and the next minute I was in my car driving home.” He couldn’t understand how this bombshell could have been dropped in his lap without any accompanying information or recommendations on what to do next.

I was angry on his behalf, but also frankly surprised that he had even been given his diagnosis at all. The Alzheimer’s Association last year published a fact that stunned many: Fewer than 50 percent of all people diagnosed with the disease were actually told by the doctors. Meantime, at least 90 percent of people with cancer of various types are informed of their diagnosis.

There are many theories about why physicians avoid telling their patients about an Alzheimer’s diagnosis. Some say it’s a lack of training; others blame a medical system forcing quick visits that don’t allow enough time to counsel patients. However, most of us working in this field believe it comes from the stigma of Alzheimer’s as robbing people of their competence, even of their personhood.

In fact, John told me that during that appointment, he sensed the diagnosis had instantly changed how the physician perceived him. The doctor seemed to think John was no longer capable of understanding his own medical information. John felt the message was clear; there was no expectation of “life” after the diagnosis—or if there was, the physician couldn’t find the words to speak about it.

June is Alzheimer’s and Brain Awareness Month. John’s situation makes it clear that we must bring dementia out of the shadows of stigma. As a society and as individuals — and this includes physicians — we must start talking openly about the disease. People diagnosed with dementia need information and answers so they can plan and make decisions while they are still able to do so, including about how they wish to live in the future. When they are denied this conversation, it is not the disease that robs them of their rights — it is us.