Tam Cummings: Loss of ability to smile - indicative that death is near

Vitruvius

Yet again I seek your insights into my DW's decline through Stage 7. She is still losing weight, but is still with us. The document from the Fisher Center, recommended on this site as a staging tool, further breaks down Stage 7 into six substages 7a-7f.  Although my DW has Semantic Dementia not AD, in Stage 7 the issues are the same. It gives duration averages for each substage of 1 to 1.5 years each. My DW exhibits all the characteristics of 7a-7d and seems to be in substage 7e, having raced through the first four substages in far, far less time.  The document goes on to say:

"AD persons who survive [substage 7d] subsequently lose the ability to smile (stage 7e). At this substage only grimacing facial movements are observed in place of smiles."

My DW has not smiled for probably 6-8 weeks, she has always just had her mouth closed in a very mild frown (unless she was expressing pain, or clamping her lips to refuse food). I didn't know if it was because she wasn't with it enough to be in a mood to smile, or if she couldn't. In months past, if she heard laughter or loud boisterous talking she would smile and chuckle along with it, probably not really understanding the actual reason for it all. She hadn't done this for awhile but on my last visit people were loudly laughing and without opening her mouth she made a soft chuckle. Her lips never changed position, they remained in the usual mild frown.

And hence my question, does anyone here have any experience to share with me on a LO who has exhibited similar behavior? How near the end were they?

I might note that the document also notes; "This 7e substage ... is followed in survivors by a final 7f substage, in which AD persons additionally lose the ability to hold up their head independently." My DW can still hold her head up away from the back and side cushions when in her Broda chair when she is semi alert, although she often rests it against the headrest when she drops back to a less alert state.

Distressingly it does go on to say: "Persons can survive in this final 7f substage indefinitely"... Wait…What? My DW can attain immortality through dementia?

Anyway, any insights or observations would be appreciated. 

elainechem

I wouldn't rely on the staging tool as gospel. Most people die from other health problems like heart disease, diabetes, or cancer before they go through all the sub-stages in stage 7.

My hubby went from stage 7a to death in 8 days. He had been on hospice for 6 months at that point.

He had no other serious health issues. He just had EOAD. That is the cause of death listed on his death certificate.

ButterflyWings

Vitruvius, we are just a step behind you. Today at least.

Having survived a few very near death downturns in the last year though, I can imagine him going from “stable” in early Stage 7, to suddenly gone as Elainechem described. Though my DH is not EOAD which we know progresses faster.

I will be watching this thread with interest. Thanks for the reminder about the Fisher Center staging detail as well.

Dr Barry Reisberg’s (Fisher) timeline and Dr Tam Cummings’ staging is a combination that I’ve found helpful through the years. https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

JoseyWales

My husband hasn't smiled in …. 2 years? 1 year? I have no idea. He can't move on his own (even his arms), needs to be fed, and no longer talks.

Hospice tells me he can go on like this for years yet.

harshedbuzz

@Vitruvius

My own dad (mixed dementia—ALZ/WKS) seemed to race through the final stages despite maintaining speech and ambulation. FTR, he remained conversational until the end. Prior to that, his progression seemed quite average.

I would say that the inability to smile occurred in the last month. I have a great picture and video taken about 6 weeks before he died of him singing ("Blueberry Hill" which was "their song") along with a DJ at an event at the MCF.

About 10 days before he died, I was taking a picture of him, and he was attempting to cooperate with a smile and couldn't— I got a strange grimace instead. I also commented to my husband that around this time, his whole physical look changed. He'd been losing weight at an ominous rate despite eating, but this was more as if he was morphing into someone completely different. His body shape and face changed to a degree that he wasn't easily recognizable, even his gender was hard to recognize.

His death certificate lists Alzheimer's Disease and Aspiration Pneumonia as cause of death. It is possible he could have died from a cardiac event, but we declined an autopsy.

HB

BassetHoundAnn

Loss of ability to smile… It seems to vary a lot among different people. My mom was smiling until the day before she died. She was probably in stage 7e or 7f. She had stopped eating and drinking.

I visited her nearly every day in MC and talked to other residents. Many seemed to have lost the ability to smile early on. Many retained it until they were quite advanced. Like conversational ability, the ability to smile is something some people hold onto for a long time, and some lose early.

I think that was is indicative of approaching death is a mask-like look that some people get. Hard to describe but you know it when you see it. It's a gaunt, gray, mostly expression-less appearance, skin taut, cheeks angular.

ButterflyWings

https://alzconnected.org/discussion/comment/214402#Comment_214402

Very insightful BHA. My DH is clearly 7a or b and does not speak much, but he can. And he still has many, many more words than the stereotype of "non-verbal" with fewer than 6 words, which even some official staging tools say is a sign of Stage 7. I think you are right in saying these things are relative. Which makes sense, as we say here "when you meet one PWD, you've met one PWD." Every brain and person is a unique individual so of course they fit in to some general guidelines but there is wide variation as well.

The smiling thing is another example, as you said. DH is tough to guage on this one as he never really ever smiled. Just a little smirk or slight change in his mouth but not much. Yet, his chuckle or even hearty laughter, and the obvious joy and twinkle in his eyes always made his humor obvious. Now that I think about it, he spoke of getting in trouble as a young child because a teacher said he never smiled. (So what?!). His mom was actually called into the school to discuss, and defended his right not to grin and guffaw to be considered "normal".

Anyway, so the loss of ability to smile will not be a progression indicator for us. But the death mask thing, yes. It is scary. He has that look sometimes now. Especially when sleeping. It actually gave me the chills a few days ago to look at him and see such a change. Even the gray tone. This is all recent, too. He was asleep, breathing with mouth open, and looking like a skeleton or skull almost. Such sad times. I know the end is closer every day.

Crushed

"Distressingly it does go on to say: "Persons can survive in this final 7f substage indefinitely"...

absolutely

DW has been in late stage 7 for four years . I have face time photos from almost every day
She has no cognitive functioning whatever but does chew and swallow She is 72 and otherwise in fine health

MCI 2010
young onset Alz 2012 age 60