Why won't my parents and their friends use the word Alzheimer's?
I know Alzheimer's can't be definitively diagnosed, but my mother surely has it. Yet she and my dad have never called her memory loss and confusion by that name, and none of their friends or my older relatives will use the word Alzheimer's either. Why does it have such a stigma for them?
Expert Answer
When many people hear the word Alzheimer's, they think of a very senile person. The word evokes a long-standing image of devastating dementia, despite the fact that people with early Alzheimer's can be quite functional and lead a meaningful and fulfilling life for many years. But people fear the idea of Alzheimer's -- the loss of independence, the loss of autonomy, and the thought of losing one's self.
It's like the word cancer was many years ago. It was frightening and somewhat taboo to talk about it. But this has changed dramatically, and there's a growing awareness that people can live with cancer and they can get treated. It's important that we put new faces and descriptions on Alzheimer's, too.
Fortunately, people are becoming increasingly public about their diagnosis of Alzheimer's and how they are living with it. Such stories give courage to those who are fearful of the disease and help to reduce the stigma.
Has your mother's doctor made the diagnosis of Alzheimer's? Sometimes, in an attempt to protect their patients, doctors contribute to the stigma by not discussing the condition openly.
It may help to soften the diagnosis in a manner appropriate to the stage your mom is in. For example, it's likely she has "mild Alzheimer's" or "early signs of Alzheimer's." Once you put the word on the table, some people may back away, but others will be relieved that they don't have to tiptoe around it anymore when it's clear something is going on.
Once your parents open up about the diagnosis, you can help them get in touch with the Alzheimer's Association, an Alzheimer's research center, or other organizations for support. You and they can meet people who are in the same boat, and that can be comforting and productive.