The questions continue after a dementia diagnosis

Posted on January 27, 2011 by Michael Corley, consultant with The Patterson Foundation

As you read in the previous blog, I am pondering how and what to do if and when I get the call about my father having dementia. The recurring question throughout this journey is, “What do I do now?”

Unlike receiving a cancer diagnosis, where protocols are established and people generally understand the disease, the diagnosis of dementia is different. There aren’t consistently established protocols for patients, because there are no treatments or cures.

The stigma associated with dementia is strong, so the public doesn’t discuss dementia like it discusses and understands cancer. (Consider this: when someone gets diagnosed with cancer, people bring them dinner and show support. Ever see this when someone gets diagnosed with dementia?)

Continuing the story from last week, my brothers and I have a number of questions and concerns.  We suspect dad may have dementia.

So what do we do?

First, we want to be sure we are correct about “our diagnosis,” so we bring Dad to his physician. (At this point, we aren’t sure we should let Dad drive, but we are not ready to have that conversation yet. So one of my brothers offers to meet him at his doctor’s office.) My dad’s physician tells us it sounds like Dad's getting older. My brother agrees, but he knows enough about to dementia to know an accurate diagnosis is critical. He asks for a referral to take Dad to a memory disorder clinic for a proper diagnosis.

This sounds simple enough, but how do we explain to Dad that he has to go to a memory disorder clinic?  That sounds frightening to me, and I am not even the one who may be having the problem. What do we do now?  How do we position this visit so that Dad will go willingly?

My brothers and I don’t realize it yet, but we are in the early stages of caregiving. We also don’t appreciate the need to get creative when helping Dad along this part of the journey. In other words, we are going to have to get him to do things that he wouldn’t normally agree to do – like go to a memory disorder clinic or neurologist for a diagnosis.

Meanwhile, my brothers and I begin researching dementia, and we do this by searching the Internet. We assume there are “dementia” websites and the information we need will be easily accessible.

Boy, are we wrong……

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