I created a visualization of the dementia deterioriation scale.

StephanT

Registered User
Jul 1, 2023
31
0
46
London/Marbella
Hi! When my mother was affected by dementia, one of my frustation was not being told what would happen "next". There was a lost a very long time during which , like most, I questionned "how could it go on for so long?".

I created a visualization of the fisher scale, which I found to be the most accurate with hindsight, despite my mother being affected by FTD, not Alzheimer's. I was careful to visualize the duration of each stage, as they are very important and often misunderstood.

The content is under CC/with atrib so feel free to share it widely! I hope it is useful!

Dementia GDS.png
 

Tricot

Registered User
Jun 20, 2017
305
0
France
Hi! When my mother was affected by dementia, one of my frustation was not being told what would happen "next". There was a lost a very long time during which , like most, I questionned "how could it go on for so long?".

I created a visualization of the fisher scale, which I found to be the most accurate with hindsight, despite my mother being affected by FTD, not Alzheimer's. I was careful to visualize the duration of each stage, as they are very important and often misunderstood.

The content is under CC/with atrib so feel free to share it widely! I hope it is useful!

View attachment 69319
 

Tricot

Registered User
Jun 20, 2017
305
0
France
Hello, thanks for posting this but I find it impossible to read and can't enlarge it. Could you post it again as a pdf attachment perhaps? Where it says 'attach files' bottom left of message box.
 

canary

Registered User
Feb 25, 2014
24,669
0
South coast
This looks like the Fisher 7 stages of Alzheimers, just presented in a different format.

The problem with any sort of "stages of dementia" is that not everyone fits neatly into the pattern - many people with dementia arrive at the stages in different orders or "straddle" the different stages.

My OH, for example, has lost most of his life skills needing help to wash and dress and can only sometimes make himself a cup of (instant) coffee and a sandwich, yet he can ace all the memory tests and does not get lost
 

Lawson58

Registered User
Aug 1, 2014
4,223
0
Victoria, Australia
One of the things that really frustrates me is that my husband has never fitted any of these stage charts and what really muddies the waters is that certain aspects of his physical health may or may not have an impact on his dementia.

Initially diagnosed with atypical Alzheimer’s, many years later he is ‘non diagnosed’ though I am absolutely certain that he has dementia of some kind. He also has chronic cardiac failure which in itself can cause confusion amongst other things. So it’s all quite complicated and I I am inclined to think that as we age, there are lots of others out there in the same boat.
 

Agzy

Registered User
Nov 16, 2016
3,718
0
Moreton, Wirral. UK.
Hi! When my mother was affected by dementia, one of my frustation was not being told what would happen "next". There was a lost a very long time during which , like most, I questionned "how could it go on for so long?".

I created a visualization of the fisher scale, which I found to be the most accurate with hindsight, despite my mother being affected by FTD, not Alzheimer's. I was careful to visualize the duration of each stage, as they are very important and often misunderstood.

The content is under CC/with atrib so feel free to share it widely! I hope it is useful!

View attachment 69319
Such a shame it is not printable as it is a really interesting and informative document . Is it possible to repost with a clearer and shareable image? Thank you
 

cobden 28

Registered User
Dec 15, 2017
193
0
Hi! When my mother was affected by dementia, one of my frustation was not being told what would happen "next". There was a lost a very long time during which , like most, I questionned "how could it go on for so long?".

I created a visualization of the fisher scale, which I found to be the most accurate with hindsight, despite my mother being affected by FTD, not Alzheimer's. I was careful to visualize the duration of each stage, as they are very important and often misunderstood.

The content is under CC/with atrib so feel free to share it widely! I hope it is useful!

View attachment 69319
Going by this scale, my Mum (92) is now at stage 4. When she was in hospital over Christmas 2019 with diabetes-related problems and was diagnosed with Mild Cognitive Impairment - my adult daughter and I were at Mum's bedside when this diagnosis was given - she was still able to hold a sensible conversation and discuss her financial affairs in a logical manner. Next year, 2020, was the last time she ever sent a Christmas card to me and a card for my birthday in June also - this was a major cgange for Mum, because she was previously always sending cards out for birthdays and Christmas to practically everyone she knew and had brought me up as a child to get my thankyou letters written by December 26th latest and posted so they'd be received before the New Year.

This year 2023 Mum has been in hospital a couple of times during the year and her Alhzeimers (formally diagnosed in 2021) seems to have got worse. She has phoned me up a couple of times late evenings wanting to know where her husband (my late stepdad) is and I've been bkunt and reminded her that he died twenty years ago. I know you're not really supposed to be like this with folk with Alhzeimers, but it's always been the case with Mum throughout my life that I've sometimes had to be blunt with her in order to get my point over to her so I see no reason to change now. She has also been telling her friend/carer that she's waiting for me to come home from school or wondering where I am - I'm an OAP myself, haven't lived at home with her for over fifty years and have lived in a different city to her for fifty years also.

Mum is still able to dress herself but relies on her carer to put a ready meal in the microwave for her as she has long since lost the ability to cook a meal from scratch. Her Sunday dinners and especially her north-country Sunday afternoon high teas were legendary within the family, but I can't homestly rember when Mum last did anything like this.

I no longer speak on the phone regularly with Mum like I used to because Mum is also deaf and refuses to wear her hearing aids when alone at home 'to save on the batteries' as she says, so talking on the phone is next to impossible at the best of times. Her handwriting has deteriorated to the point of being almost illegible and her vision is poor due to macular degeneration so she has difficculty in reading the written word anyway. Even if I were to phone but leave a message on the answerphone, Mum simply forgets to check the messages on it .

Mum has many other medical problems - asthma, emphysemia (she was a 50-a-day smoker when I was a child but gave up smoking forty years ago), breast cancer and diabetes - and I truly think it's amazing she's lived till 92 because her own parents died in their sixties/early seventies. Mum is absolutely determined to stay in her own home of over forty years until the very end or unless she is totally medically unable to cope at home and HAS to go into a 'home' - she jas alwys made this crystal-clear to everyone - although equally so I've thought she'd have been better off if she'd sold the bungalow years ago after my stepdad died and moved into an old folks' flat with rsident warden - she has the funds and equity in her bingalow to be able to buy an OAP flat, but if this were to be done it should have been done at least twenty years ago. A house move would be too much for her to cope with at her age, anyway.
 

lollyc

Registered User
Sep 9, 2020
940
0
On this scale my Mum went from 1-6 in about 5 months. Hip fracture - delirium - dementia. She was sectioned, and once released was unable to perform most simple tasks reliably, struggled with dressing in the correct order, tying shoes etc, and couldn't remember her address, any of her previous addresses, or my address.
And that's the problem I have with medication that "slows the progression". We don't even know what the progession looks like!
 

canary

Registered User
Feb 25, 2014
24,669
0
South coast
And that's the problem I have with medication that "slows the progression". We don't even know what the progession looks like!
Thats why you have to use trials using very, very big numbers to look at averages and "iron out" all the variations. Hence why I am always very sceptical about alternative treatments that claim wonderful results, but have trials of only a few hundred people.

But yes, it is impossible to extrapolate from saying that, on average, a drug will reduce the progression by x%, to saying how much it will reduce it in a single case.
 

Jerseygirl

Registered User
Feb 8, 2021
60
0
My mum is probably late number 6 or perhaps 7 but from the chart it is about another 6 years through all the stages of 7. I pray not! She is wanting to die now and had this disease since 2017 and i am her only full time carer (day and night). My prayer is she is released from all this fear.
 

lollyc

Registered User
Sep 9, 2020
940
0
Thats why you have to use trials using very, very big numbers to look at averages and "iron out" all the variations. Hence why I am always very sceptical about alternative treatments that claim wonderful results, but have trials of only a few hundred people.

But yes, it is impossible to extrapolate from saying that, on average, a drug will reduce the progression by x%, to saying how much it will reduce it in a single case.
On a whim I decided to look at a Donepezil study:
Admittedly this is old, but what struck me was that the number of participants was 566!! I had always assumed that there would be 1000s. Can't see that it is truly representative. And interesting that it found no overall benefits to taking the drug.
 

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