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Levels/stages of dementia - are you told?

Milvus

Registered User
Sep 5, 2019
32
0
I feel it might be useful to know just where Mum is on her dementia journey but was told they don't talk about stages or levels, just individual needs. She was diagnosed last week and of course I want to know more. Although she's only just got the diagnosis this isn't the beginning as there have been problems for a few years and she now can't function independently at all. We don't know what to expect in the future either.

I'd be interested to know other people's experiences. Have you been given any indication that your loved one has mild/moderate/severe or early/middle/late stage dementia or whatever terminology they use, or are these gradations irrelevant?
 
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MartinWL

Registered User
Jun 12, 2020
547
0
These terms are very general and not very useful. Every patient is different and the trajectory is difficult to forecast. Browsing this forum will give you a good understanding of what might happen in the future but there is no certainly about what to expect.
 

Duggies-girl

Registered User
Sep 6, 2017
2,248
0
@Milvus I remember taking my dad to hospital for a procedure about 2 and a half years ago and I was very surprised when the consultant described dad as having mild dementia because dad had the attention span of a gnat at the time and didn't have a clue why he was there and forgot he had been there as soon as we were out of the door. I would have said my dad had advanced dementia at the time but now I look back the consultant was probably right.

I don't think it is possible to put a person into a stage because everyone is different. Dad had no short-term memory in the end but he never lost continence (which was good) I knew that dad had alzheimers at least 5 years before he was diagnosed in 2017 and my mum knew at least 7 years before because she told me although I couldn't see it at the time.

How long is a piece of string is what dad would have said.
 

marionq

Registered User
Apr 24, 2013
6,212
0
Scotland
The above is true but I felt a need to be able to follow the trajectory of my husbands Alzheimer’s as I had no experience before that of dementia. If you google Seven Stages of Alzheimer’s you will get a rough breakdown of each stage. I remember the first time I did this he was at stage four and I felt relieved to see the symptoms written down and so recognisable to me. By the time he died he was in stage six and had moved through every one of the stages given. I would say my husband was a classic case and not everyone is so simple to read but it can be a useful tool.
 

Banjomansmate

Registered User
Jan 13, 2019
2,431
0
Dorset
The Banjoman had Lewy Body Dementia and after his diagnosis I trawled the internet and found a website that gave a listing of stages. He was showing some of the more advances signs of the disease but very few of the early ones. Even right towards the end when in residential care he wasn’t incontinent i.e. unaware of bodily function, as far as I know, he was physically unable to get to the toilet but he knew he needed to.
 

Sarasa

Registered User
Apr 13, 2018
2,312
0
This is the breakdown of stages that @marionq mentioned, The seven stages of Alzheimer's. There are other models with different numbers of stages. The Wicking Dementia Centre whose on-line courses I heartily recommend talks of early, middle and late stages for instance. The important thing to remember that everyone is different, and some people have a mixture of behaviours and symptoms across different stages.
I find it useful to look at now and again to see how my mother is progressing. She has vascular dementia rather than Alzheimer's so some things are a bit different. Her memory was not really affected till quite late on for instance.
 

jugglingmum

Registered User
Jan 5, 2014
5,993
0
Chester
When my mum had a crisis and we realized it was dementia I desperately wanted to know where she was at and how it would progress. (hindsight is a wonderful thing - she probably had dementia for 3 to 5 years before hand - I phoned her GP 5 years before hand with concerns as she'd forgotten some things completely out of character - I didn't see her very often and think she was in hostess mode when I did).

I think it was the seven stages I looked at and was shocked that mum was only early stages as so much of her had 'gone'. But some bits were better than the list said and some things worse. Mum moved into sheltered extra care, and started taking donepezil and everything stabilized - in particular her anxiety, which has never reappeared. I think the anxiety went with the removal of the difficulties of working out how to cope with day to day living in her own home. Being in a small flat with a carer popping in to give her meds twice a day, and only having to worry about the next jigsaw piece had an immediate effect (after a short settling period) and the donepezil prescribed a couple of months later also reduced anxiety.

I realised from reading the forum that it doesn't really matter what stage it is, everyone is different and I haven't looked at the stages in the last 6 years.

I guessed mum would be in her flat for about 2 or 3 years and a care home for another 2. Seven years later mum is still in her flat, but probably needs to move to a care home. Each issue has been tackled as it has arisen with more care visits added by the wonderful in house care team. She could well live another 5 years although I hope it is less as she sleeps most of the day and doesn't do anything beyond eating and staring at TV if the carers remember to put it on, she's too deaf to hear it.

Mum is still continent and mobile although I assume this will go in time, her mobility is affected more by the dementia than her arthritis.
 

Milvus

Registered User
Sep 5, 2019
32
0
Mum moved into sheltered extra care, and started taking donepezil and everything stabilized - in particular her anxiety, which has never reappeared. I think the anxiety went with the removal of the difficulties of working out how to cope with day to day living in her own home.
I can identify with the anxiety thing - Mum gets quite anxious about how she's going to do things, despite having carers four times a day, and says how relieved she is when I arrive and can take over. It does allow her to relax and just hand over to someone else. She's also just started on Donepezil so hopefully that will help too. Thanks for your reply.
 

She-Luna

Registered User
Jun 30, 2020
11
0
My Mum was only formally diagnosed a year ago, but it was categorised as 'mild cognitive impairment' before that. Her only real symptom then was appalling short-term memory, but she could manage pretty well otherwise. She has gone downhill quite rapidly this year, and very rapidly in the last 2-3 weeks. I've been 'googling' about dementia stages, but it's not that clear-cut, she's almost 97 so will probably fare differently to someone diagnosed at a younger age. She's still mobile (although much frailer after a few recent falls) and is continent.