Losing their words is a term often used in a discussion of dementia symptoms. Can someone clarify that term?
Does it mean strictly forgetting the names of items? Does it mean substituting a different name - calling an item by a totally different name - a fork instead of a book for example? Does it mean becoming non-verbal and losing the ability to speak? Or can it mean something less than those?
The reason I ask is because my mom has begun the following in the last year. She speaks in short sentences. She stops mid-sentence with the ‘uh, uh, uh’ verbiage while she’s trying to figure out her next words. She’s also adding words such as ‘I just don’t know’ as a follow up sentence to any sentence she gets out. She’s already been in the repetitive question/answer/subject for 4 years or more. We never get more than one subject discussed in a conversation - simple items like when I’m picking her up the next day. And it’s discussed several times in that conversation- or several repetitive phone calls in a ten minute period.
So, should I feel that she is losing her words or not?
I'm not a doctor, but I would say that everything you describe could be examples of "losing their words", with the possible exception of becoming non-verbal. That might be classified as something else. But yeah, I would call what your mom is doing as losing her words.
In my sister's case (when she was still very early) she'd substitute words, like my example of substituting the word "linear" for "parallel". I never really encountered the "uh" "uh" "uh" with Peggy, even now. When she'd get to a problematic word she'd just tell me "I can't say it". Oftentimes I could get the word in context, for example, "I need to feed the .......", I'd say "cat?" and she would say "yes, cat", " I need to feed the cat."
Having had a kid with ASD, who ironically was hyperlexic, I'm used to parsing speech and language into discrete skills.
When I think of "losing words" it makes me think of losing vocabulary-- being able to retrieve the word you intend to use. In my experience working with kids with recent head injuries/concussion I noticed they often had word retrieval issues especially around nouns.
I come from a chatty tribe with dad probably the worst among us. Even as a young man he either created a word for one he forgot (my favorite was "shinbacks" for calves when he was not yet 50) much like a toddler or used a word/phase that sounded similar but was entirely different (he once sent me into a store to buy "Black and Decker' marmalade meaning Crosse and Blackwell-- he did this sort of thing often enough that 10-year-old me came out of the store with the right thing). I never thought of this quirk as a symptom because he always did this sort of thing.
When dad did have trouble retrieving a more common word or phrase he typically code-switched to a more elevated term. Not long after he was diagnosed, he went to a rehab for 6 weeks after a hospitalization. He was quite angry about this and complained mightily about being locked up. About 1 week into his stay, we all attended a care-planning meeting during which dad said "I demand to know by whose authority I am incarcerated in this place". He didn't live in a neighborhood, it was a community. My car wasn't a 4-door, it was a sedan.
Dad also did a fair amount of subvocalization of words/sounds when he was alone which was odd. A lot of it was almost like scat in jazz lyrics. I don't know if it was self-soothing or if he didn't even realize.
My friend's mom did substitute random words if she lost one-- often thing or that but sometimes something that made not sense. This was especially likely if she was upset.
For my dad, the biggest losses in language seemed to be around pragmatics and prosody. Pragmatics are the social use of language. Prosody is the "music" or intonation in spoken language-- like facial expression is can be described as a flat affect.
Dad often spoke in scripted monologues rather than the normal back-and-forth of conversation. Like your mom, he tended to get stuck on one topic and loop. I feel like the endless repetition of questions was not only anxiety driven, it was the only "conversation" he could make beyond monologues. He craved attention and it was the only tool left in the box. As his disease progressed his intonation became more monotone to match his facial expression.
TL;DR. I feel like dad didn't so much lose words as lose speech as a means to connect meaningfully with others.
HB
Thank you. That’s the kind of information I needed. I just wasn’t sure before if my mom ‘fit the bill’ - There are a few things listed there that seem to fit my mom. I’ve copied the descriptions that seem to fit.
This is very sad when it happens. My partner has it pretty severely now. Other than the rote phrases like "hi how are you" she doesn't make much sense any more she speaks, and it is very frustrating to her. Probably another reason that she isolates.
I’m sorry about your partner having lost her words. It must be so frustrating and worrisome to have to guess if her needs are being met since she can’t vocalize them.
One of the reasons I started this discussion is I worry that Mom’s speech patterns indicate she’s starting down that same path as your partner.
You're right QBC, i have to be vigilant about checking things like sufficient toiletries, her room getting cleaned, etc. because she routinely refuses these things when offered and doesn't know to ask. I'm frustrated that she is allowed to refuse, but I guess the staff doesn't want a battle on their hands? As it stands now I am showering her once a week and changing her sheets every two weeks. If i didn't do it it wouldn't get done, apparently.
Having this discussion in the context of aphasia makes me think about it in a whole different light. It seems like there is a lot of misplaced responsibility that the medical system, courts, etc. place on PWDs even at later stages, and despite official diagnoses. Sometimes overruling the primary caregiver and even common sense, by applying traditional thinking about Hippa and privacy laws etc. This is due to ignorance and stereotypes about dementia I think, and needs to be corrected. It puts our PWD LOs at a disadvantage and sometimes even at risk.
My DH has had progressive communication problems for a long time, and only now do I realize I was taking him at his word on "minor" things far too long, assuming he understood the question and that I understood his answer. I now realize this was highly unlikely.
I have heard an aide even now, asking him "are you good?" to which he may nod (and they take that as a yes). They then interpret the assumed "yes" to mean he doesn't need anything. Or that he is actually declining their assistance. Huge stretch. But I know for sure he usually has no idea what they are asking him when using clear, basic grammar...much less semi-"slang".
For years I could ask my husband if he wanted something (juice, dinner, a sweater, etc.) and I've long since had to show him what I was talking about vs just naming it. He very often would say "no", but I'd give it to him anyway and he'd take it and finish the entire meal or whatever he had just said No to. His words weren't matching his intent.
DH's aphasia has now progressed to the point this formerly gifted public speaker cannot hold even the simplest conversation. But I'm only this month realizing how it is a 2-way street with him, in that just as he struggles to express himself, he also is usually not understanding what is said to him, either. During most prior stages it seemed like he understood much more due to his high cognitive reserve and my scaffolding, but I now believe he really was confused most of the time and just going with the flow. In a different setting, without me there anticipating and interpreting his needs 24/7 I believe he'd be seen as non-compliant, uncooperative though not combative, etc. What a tough situation. And with enough frustration anyone could become combative, etc. As we learn here, behavior is communication.
Sighing (again). Breathing in and out today.
For me, what I've noticed about my dad's speech patterns are that he is definitely losing vocabulary words, names, and is starting to mispronounce words (he's catching himself quickly, but I imagine that this will happen less and less as the disease progresses). He uses a LOT of filler "uh uh uh" sounds, which he's done for a long time (possibly forever), but which is now a much greater percentage of his speech than it used to be. He will also trail off if he can't quite get the word or phrase out. He's increasingly asking me to give him the word he's looking for. He's also asking me to write things for him, and I don't mean that he's dictating to me and I'm writing or typing, I mean that he wants me to just sort of magically convey his thoughts without him being able to express them himself. He can jump from topic to topic without the fellow conversant being aware that we've moved on from the previous topic. His speech is, generally, just a lot more labored than it used to be.
@harshedbuzz My dad uses elevated language all the time, and I've noticed that it seems to be a substitute for actual information. He does have a very good vocabulary and he's very well-educated, so some of it is just the way he speaks and writes -- when I read your example, "I demand to know by whose authority I am incarcerated in this place," I was like, I think I've heard my dad say the exact same thing -- but I think a big part of it is that he actually can't express information very well anymore. So instead of using plain language because he knows what he's talking about and can easily explain what he means, he uses this more formal, almost academic speech that, at first listen or glance, sounds lofty and meaningful, but when you sit with it for a while, doesn't actually SAY anything.
My mom has always been highly verbal, even in Stage 7. It seems like for the past several years she's had a harder time understanding what others are saying than saying what she wants. But often she struggles to find the words to say what she wants. You can see the struggle in her face as the right words don't come out of her mouth. A lot of times she'll do 'cocktail chatter.' Repeating phrases like "Oh yes" and "I agree" and "Isn't that something?" But often times she is able to carry on conversations. Last night when I was with her she started chattering in complete gibberish. Again you could see the struggle in her face, the realization that 'This is not what I want to say. Why can't I say what I want to when I'm trying so hard?' Totally heartbreaking. She knew she was talking in gibberish sounds.
@usernamesarehard Mom hasn’t asked me to write anything for her. That could be because I already handle all their bills, etc. She hasn’t done birthday or holiday cards in years. So she has no need to write anything more than grocery lists or calendar notes
@harshedbuzz Mom and step-dad neither graduated from high school, although she did get her GED in her 40s. Neither of them has ever had the vocabulary background to speak in an elevated vocabulary.
I’m glad I initiated this topic because I can see the loss of communication skills is weighing on several of us. We are all here to support each other
Thanks for starting this thread QBC. Agreed - this is a really important topic. It definitely is one of the biggest challenges at our house. Heartbreaking. None of us are mind readers, but when our LOs begin losing their communication skills and literal words, that's what we have to try to do...read their mind! Heaven help us all.
