frontal lobe atrophy on MRI film probably Frontotemporal Dementia

Not Talking About Dementia Adds to Its Stigma

Posted on September 29, 2010 by Michael Corley, consultant with The Patterson Foundation

Shhh……Don’t talk about it….. Dementia…

In the previous post, we discussed that we are in the proverbial calm before the storm with dementia in the United States.  If this is true, then we should be taking advantage of the time we have to build awareness, knowledge, infrastructure and tools to manage the “crisis” when it hits.

Today, almost 6 million Americans have some type of dementia.

This is 2 percent of the population or one out of every 50 people. (Think about this the next time you are driving down the interstate.) This number is projected to reach 30 million by the year 2050. Despite this, there seems to be limited action among the public to prepare for this issue. Why? I suggest that the stigma of dementia makes the conversation too uncomfortable, and without conversation, there can be little action.

The definition of dementia is a serious loss of cognitive ability. Stigma is a mental or physical mark that is characteristic of a defect or disease. Medical stigma has been around forever (e.g. leprosy).  More recently, cancer had a stigma associated with it. Back in those days, no one dared to mention the “C” word, and there was a genuine fear in associating with someone who had cancer. The same was true for HIV. Remember the reluctance to even mention HIV or AIDS?  Back in the mid-80s, you didn’t dare speak to or touch someone you thought might have HIV.

Now it seems as if history is repeating itself.

Here we are in 2010, and despite the prevalence of dementia in America, there is a stigma associated with this disorder.  Why is this?  We know it isn’t contagious, and we know that individuals can’t help getting dementia.  So why do people have a tough time discussing dementia, and why is there such a stigma with the disorder?

Several years ago, the Alzheimer Society of Ireland conducted a study on the stigma of dementia and found that the “starting point to stigma reduction is reducing the knowledge gap through education”. Education can take many forms including public education, having direct contact with people who have dementia, media campaigns, and legislation.

We need to drive action in order to prepare for the number of dementia cases over the next 40 years. We need to begin the discussion. How do we remove the stigma so we can begin meaningful discussion?

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