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Predicting future pace of decline?
Posted: Friday, January 11, 2019 10:02 AM
Joined: 7/23/2018
Posts: 126

I know there is no absolute way of predicting a LO's pace of decline according to the professionals but wanted to put this out there to the experts (people living with this disease). I've look at the TamCummings and Fast predictions also.  It scares me that Stage 7 can last as long as all of the previous stages combined. Why? Is there a pause in decline during stage 6?then another longer slower decline for stage 7? Why is stage 6 & 7 predicted so slow as compared to the other stages? Is this the norm or the extreme?

One article mentioned something that resonated with me.  It said future rate of decline can be estimated by the past rate of decline. Have any of you seen this? My DH seems to have zipped through stage 5 into 6b at a faster pace than the years previously where he was considered MCI and beginning ALZ. He seems to be at a pause this month, most daytimes if he is kept busy, he is cognizant and verbal, can answer simple questions, will talk to strangers (but doesn't make sense). Not incontinent yet.  Evenings can be hard at times, just had a delusion last night. My DH has always been the hardest worker and I feel like he fights each decline before I am aware of it, then eventually gives up and that memory or ability is gone. He is noticing that his verbal skills are declining, will sometimes say "I can't talk today" when stumbling over something he wants to say.  I am assuming he will eventually stop trying to talk as he knows he cannot find the words. He was always the talker in our marriage. I loved listening to his stories. I was the quiet one and find myself trying to fill in the quiet now and become more talkative. It will be so painful to imagine he is thinking about so much but knows he can't verbalize it so doesn't try anymore. 

I have always been an avid reader and have read so much about this disease but keep finding the best advice here on this forum. Thanks for all of your expert help. 

Posted: Friday, January 11, 2019 12:54 PM
Joined: 2/2/2014
Posts: 3966

The short answer is that the stages have almost no direct connection  to the underlying disease process. as the disease progresses, the individual loses capability, which is what the stages measure.  But the stages are not "equal interval" even on any given person. My wife is stage 7 after 8 years.  No one has any idea how long it will last.
Katy sue
Posted: Friday, January 11, 2019 1:48 PM
Joined: 9/24/2016
Posts: 165

One persons dementia is only one journey. I only know that my DH was diagnosed Feb 2016 at stage 3. He is now at 7, double incontinent, senseless speech, stooped and shuffled walk, still wandering but more sleeping and very tired. Still knows me.   Still eating. Stage 6 was probably the shortest, lasting just this summer and early fall. Placed oct 9. Who really knows how long 7 will last? I am told he may only have a few months. He will go when he is ready and I pray only that it is sooner than later and is peaceful. It’s the only thing I have control of now.
Posted: Friday, January 11, 2019 2:10 PM
Joined: 9/5/2017
Posts: 51

My EO DH began stage 6 around June 2017 where he needed assistance buttoning his shirts and didn't know how to put a belt on.  In November 2017 he needed help turning on the shower.  This month he is beginning the incontinence stage, which is minor so far.  This morning around 6:00 I didn't hear him get up to use the bathroom.  He woke me saying he had a problem with water.  I went into the bathroom and found he urinated a little next to the toilet on the floor and rug.  I usually hear him walking between our bedroom and the hallway because the floor squeaks and I get up to show him where the bathroom is.  Throughout the day I have to show him where the bathroom is.
Posted: Friday, January 11, 2019 2:12 PM
Joined: 9/7/2017
Posts: 679

Also keep in mind our LOs may be susceptible to other ailments as well.  My stage 6 FIL got aspirational pneumonia - very common - and died (unexpectedly) within a week.  

You just don't know. 

Posted: Friday, January 11, 2019 7:31 PM
Joined: 10/21/2016
Posts: 2096

VRAAB wrote:

 I've look at the TamCummings and Fast predictions also.  It scares me that Stage 7 can last as long as all of the previous stages combined. Why?

This freaked me out too.  I talked to the doctor and I can't remember the details of why, but those scales are not intended to be additive.  Our doc was forthcoming with a predictive range, based on his co-morbidities, Lewy Body diagnosis, history and her experience.  Talk to your doc about this.



Posted: Friday, January 11, 2019 11:21 PM
Joined: 7/10/2017
Posts: 385

VRAAB, for what it's worth, I kept a record of when Brenda went through the stages.

She was in stage 2 approximately 2004.  During this stage, she seemed pretty normal except that she totalled two vehicles due to inattention, which was really unlike her.  She had never even got a ticket much less been in an accident.

Stage 3 started in 2007, right after her cancer operation.  This stage went slowly but was a steady decline, and something was clearly wrong. She was formally diagnosed with MCI (stage 3) by a neurologist in April, 2012. Near the end of 2012, I retired from my job to become a 24/7 caregiver, since she needed someone home all the time since by that time she was mid-stage 4.

By April, 2013, she was in late stage 4, (she went through stage 4 in one year, and went through stage 5 in one year, also, as diagnosed by our doctor)  By May 2014, she was nearing stage 6.

Between 2014 and 2015, she lost 60 lbs. She went through stage 6 between late 2014 and June, 2016 (about a year and a half).

She started stage 7 in July, 2016.  She has been in that stage for more than 2.5 years.  Most of that time was a very gentle decline, almost a plateau, although she lost another 25 lbs. In the early part, she lost her ability to speak except for a few words.

Then, 6 weeks ago, she started a severe decline.  She had been able to walk well, but at the start of that 6-week period, overnight she lost the ability to walk, but could still stand with some help.  One day ago, she lost the ability to stand even with help.  She has no balance and her joints are stiffening. We are now using a hospital bed and a wheelchair all the time. Today we (the Visiting Angels part time caregiver and I) could hardly get her awake and out of bed, and all day she uncharacteristically napped.

We are entering the last part of stage 7, and she went from a slow decline to a very rapid one.  It seems that was the way it was all along -- some stages really went fast, and some slow, but it could change in an instant.  Frankly, I'm worried about this latest development.




Posted: Saturday, January 12, 2019 9:25 PM
Joined: 7/23/2018
Posts: 126

Mike, let me start by saying how sorry I am to hear of your wife's recent rapid decline.  I know this is heartbreaking for you. I have admired how loving you have taken care of your wife through this horrible disease and have learned a lot from your posts.  I also appreciate the detailed post you made about the pace of your wife's decline by stage and description of skills lost. It is very similar to my own DH's who is beginning stage 6, about 6b now. 

May peace be with you and your wife.

Seasons In The Sun
Posted: Sunday, January 13, 2019 10:47 AM
Joined: 5/21/2018
Posts: 63

   I have read the different articles about stages and duration and have come to the conclusion that they are so general it tough to figure out. My DW has had one or another from stage 5,6,7, for the past year or so. Everyone is different. My DW has been incontinent for two years now. She started having difficulty walking toward the end of 2017.  She is totally wheelchair bound for the past six months. 

Much like Mike I am also 73. We have much in common. I lift my Dw out of bed and into bed every day. She cannot stand without me holding her in a bear hug. Five days before Christmas she was put on Hospice care at home. Hopefully I will be able to keep her home until the end. It may be tomorrow or a few years from now. No way of knowing but I 'm not going to dwell on it. Take one day at time. Best wishes to all .

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