A very good description of the stages of dementia

Quilting brings calm

I saw this in a thread on the spouses forum.  In a post with lots of great links. I wanted to highlight this particular one as it’s the best description of the various stages  I’ve ever read.  My only concerns about it are 1) my mom seems to be a mix of stages and 2) it states stage 5 is when the person can’t live alone.  My mom is stage 4 and she and my dad have been in assisted living for over two years. No way is she capable of living alone. 

How does your loved one fit in this description 

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

Wild-West

Thanks for this, Quilting! Knowledge is power.

My mom is in 6 c,d,e. 

Wild ...

jmlarue

My DH does fit the timeline or manifestations or these stages very well. He most closely fits with State 6e in every aspect EXCEPT he remains capable of attending to most personal care ADLs like dressing, grooming, bathing with only stand-by assistance in/out of the tub. Thankfully, he is rarely incontinent. The biggest disconnect is with regard to the timeline stated for the various stages of progression. I can only presume that is because this timeline is likely common to the person with AD. My DH has vascular dementia (where he is suffering chronic microvascular strokes) that can steal another cognitive function overnight and progress rapidly. He was diagnosed with mild cognitive impairment in 2019. Just 3 years to go from Stage 3 to Stage 6e.

Quilting brings calm

Jmlarue- mom’s neurology NP didn’t specify a specific dementia  type. She’s got atrophy of  the fronto-temporal area, but when asked about FTD, the NP said only time would tell. She’s also  got the micro vascular changes that many people her age have.  Of course she also said  mom was at stage 3 based on her MMSE score in May 2021.  When even I can tell she’s been stage 4 since at least November 2019.    I’m seeing some changes in her this spring, but she doesn’t appear to be near stage 5 overall. Just all over the map.  

3 years from stage 3 to stage 6 sounds  like you’ve been constantly on your toes dealing with changes.  

GothicGremlin

I use that page too.  I also use this one: https://www.dementiacarecentral.com/aboutdementia/facts/stages/

In the beginning I was constantly going between those two pages. 

My sister Peggy is near the end of stage 6 at this point. I always thought that Peggy progressed quickly, but jmlarue I think your DH has progressed quicker than she has. Peggy was diagnosed in later 2018 and was probably somewhere in early stage 4 then.

harshedbuzz

QBC-

This feels like a narrative version of the Reisberg's Global Deterioration Scale-- they even cite Reisberg. 

It's a good one, but I have a serious problem with the notion of "denial" in Stage 4 when it seems the introduction of the concept of anosognosia would be more appropriate and helpful for families. 

I think it's pretty common for PWD to straddle stages or even bounce between them on occasion as they progress. 

HB

Quilting brings calm

GG- I have always sent people to the one you mention in the past.  However  ( as HB states) this one is a narrative and I feel the  extra descriptions explain things better.   Like you, I will probably go back and forth between both versions.  I’ve been trying to figure out Mom’s recent changes. 

HB- the use of the word denial but not also describing anosognosia is a concern now that you’ve mentioned it.  Thanks for noticing that!  It is important that caregivers understand that some people do know they have deficits  but are in denial while others are incapable of knowing they have deficits.  Maybe everyone should proceed with the latter theory unless the PWD brings it up themselves? 

SusanB-dil

Thank you for the link. DH's mom and my mom both fit the timeline.  DM firmly into 5. MIL definitely late stage-5, but has 'stepped' into 6, and other times, perhaps when 'showtiming' has done better, (but not enough to say she would be back to stage 4). But I have seen where LO can go back and forth between stages for a time.  Agree with the distinction between 'denial' and 'anosognosia'.  In MIL mind, there really is nothing wrong. That this is 2010 and a long-past president is current, is her 'reality'.  We do not argue with her that this is 2022 and there is a different president now - to her, that is just science fiction.

mommyandme (m&m)

Thanks QBC!

jmlarue

Quilting - The fast progression has really been the most concerning aspect of DH's dementia journey. His mother died with end-stage ALZ almost 20 years ago. Although we were never involved as daily caregivers, we both provided back-up and respite care for her. It was a far more gradual progression of the losses - almost 12 years from diagnosis to death. There were a couple of years prior to diagnosis that she was showing symptoms that were noted, but only recognized in retrospect. I could fairly tack on another year or two to my DH's decline to account for those early days of chronically losing his keys and failure to start or complete projects. I think a lot of other people can relate to that early period of losing executive function as "quirky" behavior - it didn't really ring alarm bells for me or his family in spite of his mother's history. Maybe he'll make it 12 years to end of life, too, - but I'm doubtful.

Running Poetry

Thanks for sharing this resource. Back when my mother was initially diagnosed it was hard to find language like this. In 2020, I did a training for caregivers that went over the different stages and showed us a video that showed different people in different stages trying to do a similar activity like folding clothes or making a sandwich. The differences in the stages were pretty clear. I wanted to add that the stages are not linear; some others mentioned this in their posts. Some people will AD will have the ability to dress themselves for much longer and others will loose that sooner. The drawback of this particular resource is that it relies on one or two behavior changes to describe the whole stage. The 7 stages paints a coherent illustration of AD but there is so much variation in how the disease progresses the the reality and the illustration will only faintly resemble each other. 

My LO with AD has been dealing with the incontinence issues for a while now, so much that it blends in with the general issues that she had due to bladder incontinence prior to diagnosis. For a little while, my mom occasionally enjoyed staying in her PJs for as long as possible, but the more she gets into the habit of leaving the house the more engrained the habit remains when she is staying home. This would put here in stage 5 and 6c. She bathes herself regularly too.