Info re: Stages!!

Lady M

Registered User
Sep 15, 2018
292
Essex
Hi everyone!
I keep reading in various threads where the writer states that their PWD is at the early, middle or later stage of the dementia journey!
I am struggling to determine at what stage is my OH!
Info please as to what the various stages are and how and by whom the stages are diagnosed.
Thanks !
 

canary

Registered User
Feb 25, 2014
11,344
South coast

Beate

Registered User
May 21, 2014
11,839
London
Everyone is always so het up about stages and how to diagnose them, yet they are fluent and someone can have symptoms from more than one stage at the same time. Just take each day as it comes, as putting someone into a certain stage is not particularly helpful.

The only thing I did find helpful is this symptoms tracker that you can fill in and pass on to anyone who needs to be aware of them:

https://alzlive.com/wp-content/uploads/2014/10/Alzheimers-and-Dementia-Person-Centered-Symptom-Tracker.pdf
 

Ohso

Registered User
Jan 4, 2018
168
I probably agree that the knowing the stage isn't actually useful as 'it is what it is' and whatever is happening right now is what you deal with.

However, this forum is set up with stages in mind and for me, its useful to have an indication of where mum is, so I can read posts and do a little research to know whats ahead.

I think mum is currently well into stage 5 although isnt hitting all the markers and possibly shows signs of 6, but so few that the markers feel a long way off, although I do know and appreciate that things can change very quickly.
 

Lady M

Registered User
Sep 15, 2018
292
Essex
Hi @Lady M
There are a few different definitions of the different stages of dementia, although most of them follow similar patterns
These seem to be the most helpful
https://dailycaring.com/3-stages-of-dementia-what-to-expect/
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/?mtc=google&kwd=alzheimers_stages&gclid=CJTyvb3Z-csCFQcUGwod4MYGmQ

Ive also added a couple of you tube clips by Teepa Snow
Thank you canary!
When I feel Ihave the strength I will watch the you tube videos!
Many thanks for your helpful reply!
Regards
Lady M
 

Lady M

Registered User
Sep 15, 2018
292
Essex
Everyone is always so het up about stages and how to diagnose them, yet they are fluent and someone can have symptoms from more than one stage at the same time. Just take each day as it comes, as putting someone into a certain stage is not particularly helpful.

The only thing I did find helpful is this symptoms tracker that you can fill in and pass on to anyone who needs to be aware of them:

https://alzlive.com/wp-content/uploads/2014/10/Alzheimers-and-Dementia-Person-Centered-Symptom-Tracker.pdf
Thanks you Beate!
I am not het up and certainly wouldn’t be labelling OHin a stage and thinking or looking for other symptoms!
I was curious as others on TP mention stages of the illness.
I have learnt to accept what the day brings and deal with things to the best of my ability!
Regards
Lady M .
 

Lady M

Registered User
Sep 15, 2018
292
Essex
I probably agree that the knowing the stage isn't actually useful as 'it is what it is' and whatever is happening right now is what you deal with.

However, this forum is set up with stages in mind and for me, its useful to have an indication of where mum is, so I can read posts and do a little research to know whats ahead.

I think mum is currently well into stage 5 although isnt hitting all the markers and possibly shows signs of 6, but so few that the markers feel a long way off, although I do know and appreciate that things can change very quickly.
Thanks Ohso
I think you understood I asked the question because others on TP and the forums are set up for certain ‘stages’
Like you say changes can occur so quickly and we just have to adapt!
Regards, Lady M
 

tryingmybest

Registered User
May 22, 2015
626
I have to say my Mum (who has lived with me for 4 years) has been in the late stage all that time but the funny thing is, a lot of the symptoms she didn't previously have in the early stages, she's now getting, so she seems to have done everything back to front!! I just have always taken it a day at a time.
 

vmmh

Registered User
Jun 25, 2018
72
This is what I have on stages: I wanted to type it in so you wouldn't have to look it up.
Stage 1 - No impairment, not detectable and no memory problems (not sure why they feel its necessary to label this as a stage but, they did)
Stage 2 Very Mild Decline - person may notice memory problems or lose things around the house but still do well on memory tests.
Stage 3 Mild Decline - friends and family notice memory and cognitive decline. Performance on memory tests is affected. Difficulty with - finding the right word to say during conversation
- remembering name of new acquaintance
- planning and organizing
- frequently lose personal possessions and valuables
Stage 4 Moderate Decline - clear cut symptoms apparent. Problems with simple arithmetic, forget details of life histories, poor short term memory - not recall breakfast - , inability to manage finances
Stage 5 Moderate to Severe Decline - begin to need help with day-to-day activities
- significant confusion
- inability to recall own phone number
- difficulty dressing appropriately
- maintain a modicum of functionality. Typically still bathe and toilet independently. usually still know family members and details of personal histories, especially of childhood and youth.
Stage 6 - Severe Decline - need constant supervision and frequent professional care. Unaware and confusion of environment and surroundings. Major personality changes and potential behavior problems. Need assist with activities of daily living, toileting, bathing. inability to recognize faces except closest people. Loss of bowel and bladder control. wandering.
Stage 7 - Very Severe Decline - lose ability to respond to environment or communicate. No insight to their condition. Needs assistance with everything. Lose ability to swallow, body movements become more rigid and may cause severe pain. Contractures form and become immobile. Speech limited to few words or is lost, unable to sit up independently. Grim facial movements replace smiles.
This is from my past research. Guideline I found said
Mild, early stage = about 2-4 years
Moderate and middle stages = 2-10 years
Severe to late stages = 1-3 years

Hope this helps. It did help me along the way.
 

Lady M

Registered User
Sep 15, 2018
292
Essex
This is what I have on stages: I wanted to type it in so you wouldn't have to look it up.
Stage 1 - No impairment, not detectable and no memory problems (not sure why they feel its necessary to label this as a stage but, they did)
Stage 2 Very Mild Decline - person may notice memory problems or lose things around the house but still do well on memory tests.
Stage 3 Mild Decline - friends and family notice memory and cognitive decline. Performance on memory tests is affected. Difficulty with - finding the right word to say during conversation
- remembering name of new acquaintance
- planning and organizing
- frequently lose personal possessions and valuables
Stage 4 Moderate Decline - clear cut symptoms apparent. Problems with simple arithmetic, forget details of life histories, poor short term memory - not recall breakfast - , inability to manage finances
Stage 5 Moderate to Severe Decline - begin to need help with day-to-day activities
- significant confusion
- inability to recall own phone number
- difficulty dressing appropriately
- maintain a modicum of functionality. Typically still bathe and toilet independently. usually still know family members and details of personal histories, especially of childhood and youth.
Stage 6 - Severe Decline - need constant supervision and frequent professional care. Unaware and confusion of environment and surroundings. Major personality changes and potential behavior problems. Need assist with activities of daily living, toileting, bathing. inability to recognize faces except closest people. Loss of bowel and bladder control. wandering.
Stage 7 - Very Severe Decline - lose ability to respond to environment or communicate. No insight to their condition. Needs assistance with everything. Lose ability to swallow, body movements become more rigid and may cause severe pain. Contractures form and become immobile. Speech limited to few words or is lost, unable to sit up independently. Grim facial movements replace smiles.
This is from my past research. Guideline I found said
Mild, early stage = about 2-4 years
Moderate and middle stages = 2-10 years
Severe to late stages = 1-3 years

Hope this helps. It did help me along the way.
HI Vmmh, thank you so much, it’s clear , concise and very explanatory! Just what I have been trying to find for ages!!!!
Whether this will help, I can only hope so, a week of problems with a bit of a crisis this morning!
Thanks again,
 

vmmh

Registered User
Jun 25, 2018
72
HI Vmmh, thank you so much, it’s clear , concise and very explanatory! Just what I have been trying to find for ages!!!!
Whether this will help, I can only hope so, a week of problems with a bit of a crisis this morning!
Thanks again,
You are more than welcome Lady M. I used the information to mark down dates as my husband went through them. They do cross over a lot but at least its something to give you an idea what is going on. When I looked back over my notes from life events, I remember being shocked to see how fast he progressed from one stage to the next. He went from 0 to stage 6 in 6 years!! He is currently in stage 7. Of course everyone is different. I think the thing that helped me the most is that it made the whole thing ore real to me. After all, I couldn't dispute the facts I had written down. It wasn't a pleasant thing to realize but I needed it to help me move on. Hope things go smoother for you.
 

Banabarama

Registered User
Dec 28, 2018
52
Sussex
Hi @Lady M
There are a few different definitions of the different stages of dementia, although most of them follow similar patterns
These seem to be the most helpful
https://dailycaring.com/3-stages-of-dementia-what-to-expect/
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/?mtc=google&kwd=alzheimers_stages&gclid=CJTyvb3Z-csCFQcUGwod4MYGmQ

Ive also added a couple of you tube clips by Teepa Snow

Thank you Canary for the Teepa Snow clips. She is good. I shall try to find more.
 

myss

Registered User
Jan 14, 2018
431
I probably agree that the knowing the stage isn't actually useful as 'it is what it is' and whatever is happening right now is what you deal with.

However, this forum is set up with stages in mind and for me, its useful to have an indication of where mum is, so I can read posts and do a little research to know whats ahead.

........
I agree with Ohso. I appreciate that some may not want or need to know what stage their loved one is at, but I find it useful and somewhat interesting to see what else this illness may bring and can somewhat be prepared for them.

I reckon my dad is in the latter stages now (middle to end/stage 6-7) as we've experienced most of the symptoms, the most recent being double incontinence.
 

Sarasa

Registered User
Apr 13, 2018
857
Thanks you for taking the time to type that out @vmmh. I've seen stuff on stages before but that makes them very clear. My mother seems to exhibit various behaviours from stages 3 to 6, but I guess she is mainly stage four shading into five.
 

Ohso

Registered User
Jan 4, 2018
168
I did find another article that further split the 7 stages, but this simple illustration might be useful as an 'at a glance' indicator, currently for mum, who I think is stage 5 is spot on with the score, she is at 15/30.
https://www.mccare.com/pdf/fast.pdf

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

As an aside, knowing the stages helped me understand dementia more, and helped me realise that some of the things I felt I 'should' be doing were actually to make me feel better, to feel I was 'helping' when in reality some of the things I was doing had the opposite effect, Teepa Snows videos were wonderful at illustrating the two sides ( carer/PWD) and actually allowed me to take a step back and not feel I had to be proactive all the time, as it isn't what mum needs.
 

jenniferjean

Registered User
Apr 2, 2016
662
Basingstoke, Hampshire
It is difficult to know exactly how much to do for a PWD. My husband will put on a shirt and then come downstairs asking me to do up the buttons for him. I know he can do them himself although it does take him a lot longer, but he seems to like having things done for him. We have a tv box that cuts off if left for over 2 hours. He'll call out to me that the tv is counting down, he even counts with it. But if I call back that he needs to press a key on the control as I'm busy he'll do it himself. Just how much should I do?
 

Sirena

Registered User
Feb 27, 2018
2,063
Whatever list I see, my mother always seems to overlap categories. Using @vmmh's list she is definitely past stage 5 but not yet fully stage 6. I tend to think of her as late mid-stage.
 

canary

Registered User
Feb 25, 2014
11,344
South coast
Depending on which part(s) of the brain have been affected you can often get symptoms which appear to be out of sequence - this is especially true of vascular dementia and frontal lobe dementias.
 

Sirena

Registered User
Feb 27, 2018
2,063
That's interesting Canary. My mother (supposedly) has Alzheimers. Her speech became muddled quite early, even two years ago it was a struggle to have a simple conversation with her, and communication is now very limited. But she can sing all the words to songs, and can read out a sentence from a magazine although I'm not sure she understands what it means.