Progression timetable?

SATX

Is there any way to estimate what the timetable for progression is? My DW's doc was completely non-committal.  My DW is incredibly healthy... except for her scrambled gray matter.  Surely there is some resource based on age, symptoms, underlying health, etc.  What can you suggest friends?

Rick4407

Hello San Antonio,  below is an internet address, probably not a link.  You'll need to cut and paste.  It has several of the usual scales of levels, as well as behaviors, and average duration.  My experience is that it's a very general guide....   Every case seems to be unique, Good luck.  Rick

https://www.dementiacarecentral.com/aboutdementia/facts/stages/#moderate

markus8174

If you find a reliable one please post it. No doctor I've spoken to will commit any timetable. A lot depends not only your wife's overall health, but by what age she was diagnosed. Now-a-days we also have to consider what treatments are on the horizon. I've never figured out how to post a link on this site, but the webpage I've seen is Dementia Care Central. Under the tab "learn about dementia" it will give you a dropdown box that offers stages of dementia. It is in the Reisberg 7 stage scale, and offers staging markers and the average length of each stage. As anyone will tell you, there are no rules. A person can hover in stage 5 for years then suddenly jump to earily stage 7 in months for no appearant reason. The page I listed is the only place I've ever followed that offers even ballpark durations for each stage.  Another page I've been on that offered average duration time for each stage breaks the stages down to "sub-stages" ie: 7a,b,c...  I don't have a guess where it was. I found it confusing and it had far too many crossover symptoms to ever help a layman like myself. My DW would have 2 markers for 5b, 1 marker from 6a, and 2 from stage 7. What stage is she in?

If someone smarter than me can post a link to Dementia Care Central it would save others the hastle of sorting through a google search.

glitterqueenscare

This is the site Markus is referring to:

https://www.dementiacarecentral.com/aboutdementia/facts/stages/#stages

My parents have both had dementia, both were diagnosed in their late 60's both reached stage 6 within 8 years. Dad died from a complication before reaching stage 7, Mom is 77 and in what some call stage 6c.  Look up Dr. Resibergs 7 clinical stages or the global deterioration scale for more detail on each stage.

I think the thing to remember is every PWD is going to progress at a different pace, sometimes their progression may slow down significantly and sometimes it may move along very quickly without explanation. 

The heartbreaking part is when out of the blue they will have a great day, seemingly bouncing back from  weeks or months of progression and click back into a shadow of their old self.  I hate this disease.

Some people do not like to look into the stages and doctors can be reluctant to specify where a PWD falls but I personally have found comfort in knowing what to expect, how to prepare myself emotionally and provide consistent care for them through each stage.  

My beautiful, funny, artistic, loving Mom is at a stage that I pray we move through quickly and she can find her peaceful release from with little agony. Enjoy the good days when they come. 

God bless you and your loved one on this journey

Quilting brings calm

Scroll to the right on the dementia care central chart. You will see AVERAGE durations for each stage.  If you know the type of dementia, you can Google that and get AVERAGE life expectancies,  but it is going to vary for each case by age, general physical health, quality of care, accidents, etc.

Pat6177

Posted in another thread about a week ago:

 https://www.dementiacarecentral.com/aboutdementia/life-expectancy-calculator/

Hope it works

Pat

Wyoaviator

SATX-

Oh, the darkness of not knowing. There are so many platitudes about the trajectory of this disease. When DW was diagnosed, I was told 3-5 years. She was in care for fifteen months. If I had not got her into care she would have lasted about 3-5 weeks. The only truth is every day you get closer to the end.

Stay close to these message boards. These people have walked the walk-they understand what you are going through and want to help as best they can.

Doityourselfer

Thanks for posting that informational link.  I describe my husband as being in the severe stage but he can still feed himself (finger foods or cut up food only) most of the time but cannot hold a cup or water bottle, slowly walks/shuffles although he has become a lot less mobile this year.  His speech is unintelligible, and he's 100% incontinent.  Still can stand in the shower but I wash him, cannot brush his own teeth.  Needs assistance with all ADLs and sleeps/stays in bed longer than ever.  Otherwise he's healthy.

aod326

The "not knowing" and unpredictability, throughout the course of dementia, are extremely difficult. You may not yet have experienced the rollercoaster, but I found that hard too. Some days DH seemed relatively OK, then the next day he'd be forgetting to put on pants to go outside. Then the next day he'd seem OK for a few days and I had to adjust so that I wasn't seeming as if I was taking over everything.

I read and re-read every stage guide I could find; I read Tam Cummings book Untangling Alzheimer's almost every night, somehow thinking I'd find out something new. I was constantly trying to identify what stage he was in, and therefore how long we'd have. As others have said, though, these are averages and everyone is different. My DH was extremely fit, and healthy. We had thought the issues he was having were related to the seizures he had started to get in 2015, so he was only diagnosed with dementia in Jan 2020. At that point I'd say he was about a Stage 5. He died in April of this year, so ran through the stages pretty quickly.

I think this is a case of plan for the worst and hope for the best. Definitely make sure you have all the various legal and financial planning pieces in place. Then, if you possibly can (speaking as someone who found it extremely difficult to do!), try to go with the flow in regards to timing of progression.

Farm Gal

My husband was diagnosed 6 years ago and is in stage 6.  He, too, is extremely healthy although advanced in age.  I expect him to be with me for another 2-4 years.  But it is so hard to really calculate the length of time.   A friend's husband lasted nearly 20 years from EOAD another friend's wife was just 4 years with EOAD.  

Here is a link of behaviors and stages that I have always looked at to guide me as to my husband's journey.

https://tamcummings.com/stages-of-dementia/