Dementia Letters

Today is the start of the Dementia Letters project. As an ongoing project announced originally in May, I will post letters and thoughts written by you, by those who have a story of dementia that normally would not be heard. We hear the voices of advocates, the doom, and gloom of TV specials and spots, the extraordinary, and the stigma, but the most powerful of stories come from the voices of those living with dementia, struggling, suffering at times, and basking the gifts, joy, and playfulness that also comes along. Here, on Sunday mornings, you will find a Dementia Letters post. I encourage you to write a letter, to share your story that we might learn from and/or support you. Please feel free to email me, or fill out this form if you would like to write a letter. Let us fill each Sunday of this coming year with letters from you.

So, let us kick this off with a letter by Edie.



By: Edie Norenberg

What does it mean when we refer to Dementia?  Most people will respond with the concept of a person who’s confused.  Actually, when I began thinking about this topic, “Confused” seems to be the operative word.  Dementia often has the connotation of “a state of confusion in the older adult”.  What we don’t realize is it creates confusion for most who are involved with this disease as well.  

     How many types of dementia are there?  That can confuse a person right there!  Unless you have a strong medical background or become a student of the disease, you could never keep them all straight.  There are so many dynamics to dementia.  Once the diagnosis comes, what tools do we use to treat the person dealing with it?  In my career of assisting people with this disease, it has become difficult to watch spouses and co-workers come up with dignified ways to assist in the loving care of these individuals.  When we are confused about that process or any process for that matter, what is our instinct?   We avoid!  It becomes too overwhelming to think about how to adequately care for a person with this complex disease so perhaps we simply flounder and ride the wave as the disease takes its’ course.  

     Dementia is on the rise and as far as I know, this disease isn’t going anywhere anytime soon.    We need to ask ourselves, as a society, what are we doing to educate, accommodate and create a better quality of life for these individuals?  Putting them on locked units and letting them sleep their lives away is no longer an option.  We need to train specialists in the disease who will, in turn, train our workers and give families the tools they need to make this journey with their loved ones. We need to create avenues for these folks to express themselves in a way they can be understood. Creating these environments requires funding though and awareness is key!  Everyone will be touched or affected by this disease somehow.  We change the world one step at a time. Figure out how to be the change you want to see in the world.  Fund the Alzheimer’s organization, educate yourself, donate your time to a Memory Café, and keep looking for ways to affect change in the way we view and deal with this disease.  It doesn’t just happen! 

Published by Kathryne Fassbender

Creative Gerontologist, Speaker, Catholic Innovator. I am also the granddaughter of someone who lived with Vascular Dementia.

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