I had someone ask me the other day why I’m so comfortable referring to dementia by its name. My immediate, blunt response was “because that’s what it is”. But the more I thought about it the more I realized that while I call it what it is, doesn’t mean that everyone else is OK with that. I’ve worked with PLENTY of clients who assured me that there was nothing wrong with them (although they couldn’t remember their spouse’s name, where they were, or why they were seeing me) and that I was a dirty liar by saying they had any condition that might imply otherwise.
Here’s the scoop. Call it what makes you and your loved one the most comfortable. Some of my folks and I call it by the specific type of dementia they have. With Lewy body we call it “Lew” and talk about it like he’s another person in their life who is like a naughty elf who just likes throwing wrenches and making their life miserable. I’ve found that a lot of people living with Lewy body appreciate this approach and find it easier to talk about it when we do. I’ve done this with other conditions as well (especially as many are named after the physician who identified it. I’m sure they were great guys who are, unfortunately, associated with a horrible illness. Doesn’t make me stop bashing their name though) with some success. Others want to just call it memory loss. Some want to talk about it with the full title (I have Frontotemproal Dementia) and some don’t want to talk about it at all. I’ve even had a few make up completely different titles for what they have because it works for them. Perfect!
My point is, this is not necessarily a fight worth having with someone if they are not comfortable calling dementia dementia. While I tend to be an overly direct person, I’ve also done enough tap dancing to make Fred Astaire look like an amateur to work around someone’s discomfort with their disease process. I know what’s really going on and I know what they need to help navigate the journey. What we call it, is not as important as all of that.
What’s in a name? Well, with dementia, it doesn’t really matter what we call it. It still stinks.
Dementia, Memory Loss, etc.
My mum is happy to acknowledge she has Alzheimers but is adamant that it isnt dementia and isnt progressive in its decline.