Dementia, Alzheimer’s + the “Others”
I’m going to go out on a limb here (don’t worry, Maria - i’ll keep it G rated) and say We … you (reader) and Me… and Maria, and my Dad, and Lia, and Pete and Erin, Wanda and Sarah; all of us. This whole, sweet little community - We are NOT an “other.” Now, you’re probably thinking to yourself, what is an “other” - let me explain further.
When sweet Frankie was diagnosed with FTD, his neurologist told me that his dementia was “a-typical” and would likely fall under the category of “other.” You can imagine my response to that and because I made a promise to Maria, i’ll breeze over my verbiage and keep it clean. OTHER? Excuse me? Does that mean he doesn’t “fit” in with the typical form of dementia? It feels minimizing and dismissing. Sure the symptoms of FTD differ from “typical” dementia and the age of onset is generally much earlier, however that doesn’t make us the “other” - it makes us dementia too.
Using terms like other or atypical or uncommon are not only false, they tend to be a bit dismissive in my humble opinion. To me, to my family and to all the others affected by FTD, it is not a disease that meekly falls to the sidelines as “regular” dementia takes center stage. Do we classify forms of cancer or heart disease as such? I don’t think so.
I’m sure there is someone reading this who likely doesn’t agree, and you know what? thats ok! We live in a world where we can disagree and still respect each others point of view. We are lucky that we get to use our minds to think critically about all different sorts of issues and ideas! Moving forward, I propose that we use terms that are more inclusive, more clear and more all encompassing than words like “other.”
The hard part is then - what is that term?
Personally, when I explained my dads FTD diagnosis to people, I would often say things like “My dad has a lesser known form of dementia called FTD,” or “My dad was diagnosed with a neurodegenerative disorder called FTD, which is a form of dementia.” But what I wouldn’t say is … “my dad has FTD which is an "other” type of dementia.”
Wanda’s episode, linked here, really got me thinking about the way we speak and how words, although not meant to harm, can feel restrictive and exclusive. I’m not one to curtail an opinion or speak my mind when the time is right, but for this - because it holds such a special place in my heart - we have to do better. This community is not an other. Your loved one is not an other. FTD is not an other.
This is where we can educate. This is where we can change the tune. This is where we can advocate.
As you visit doctors, or chat with neighbors, lets all do our part to make sure “other” is used appropriately. Lets include instead of exclude. Lets make little changes with big results.
You in?
xx,
R
