The Stigma of Dementia and Alzheimer’s

I have this inner conflict about dementia and Alzheimer’s.  My ultimate wish is for a future when an Alzheimer’s diagnosis does not come as the same kind of devastating blow that it is today.  It has made me think a lot about why Alzheimer’s is so devastating.  It doesn’t cause physical pain, nor does it mean you only have a few months to live.  But it does mean that you and your family will participate in the slow decline that leads to a long list of unpleasant experiences.  The one that comes to mind now is dealing with the dignity issues that go along with incontinence.  But, geesh, incontinence comes with a whole list of other physical conditions that we do not respond to in this way.  See……thus begins my inner struggle.

My business partner and sister in law, Michala, and I were discussing this recently and I think she really got to the root of the issue.  Dementia is often thought of as a mental illness, and our culture does not do well with mental illness and mental health issues. I also am a firm believer that how we handle mental health issues in our culture is one of our country’s most urgent crises.   I’m the kind of person who wants to find a way to fix things, to make them right.  How do I help make this stigma go away?

My inner struggle over this is the part that we can’t deny.  This disease will strip the person who is afflicted very slowly of everything they have.  Those of us who love them will have to watch.  But, we can do everything possible to make every moment we have the best it can be.  We just need to learn how.

I’ve decided, for now, that what I can do is educate people.  Not educate them about the physical processes that happen in the brain as someone progresses through dementia or Alzheimer’s, but educate about the people who live with the disease and how we can make their lives better.  I feel so strongly that we CAN make their lives better and it should be important to ALL of us because Alzheimer’s and/or dementia WILL touch all of our lives in one way or another.

One thing we are doing now is the KC Memory Café.  Like us on facebook to learn more about memory café’s and how they are helping improve the lives of those living with dementia.