I created a visualization of the dementia deterioriation scale.

[StephanT]

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!

 

[Tricot]

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]

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]

This looks like the Fisher 7 stages of Alzheimers, just presented in a different format.

Clinical Stages of Alzheimer’s

New York University’s Dr. Barry Reisberg outlines the seven major clinical stages of Alzheimer’s disease. Dr. Reisberg is the Clinical Director of New York University’s Aging and Dementia Research Center.

www.alzinfo.org

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]

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]

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

 

[Kristo]

This is really useful, thank you.

 

[cobden 28]

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]

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]

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]

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]

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:

AD2000 Trial - A reliable assessment of the efficacy and safety of donepezil and aspirin in Alzheimer's Disease

AD2000 Trial - A reliable assessment of the efficacy and safety of donepezil and aspirin in Alzheimer's Disease.

www.birmingham.ac.uk

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.

 

[Chizz]

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.

I know your's is an old post but it is pertinent to my OH, for whom I've been solely caring for 7 years so far, who can speak lots of words, but only three or four in a row at any one time, before going in to sounds and non-words. She can talk incoherently for ages if in a mind to do so, and probably thinks she's talking normally. Sometimes she'll just sit and shout sounds repeatedly, in what seems to me as frustration. She hasn't been able to read or write for some years, and cannot follow most tv, but likes nature pictures. Nearly two years ago, she forgot how to walk.
She cannot weight bear, and thus can't walk and thus cannot go to a toilet, spends all her time in bed or chair. Whilst she can't usually follow instructions, she does allow me to brush her teeth, comb and occasionally wash her hair, and after an initial struggle I do get to cut and file her finger nails and toe nails. She cannot handle or cope with cutlery and thus, I feed her food and drink. Her appetite is greatly diminished. Medications are cut in two and hidden in cereal. She's still able to swallow normally. She gets agitated and verbal (noises) when carers come to change her pads, clothes or the bed, but soon forgets that and calms down, until the next time! Music is a great calmer. She's mostly stopped seeing non-existent people in the room or the garden as she used to.
To think this may go on for years and years like this is really really awful for her, for me, for all the family who she sometimes seems to recognise but mostly not.
What a life!
I've had enough.
I'm not me anymore. She's not been her for years.
We're here, although not all there.

 

[maggie6445]

I know your's is an old post but it is pertinent to my OH, for whom I've been solely caring for 7 years so far, who can speak lots of words, but only three or four in a row at any one time, before going in to sounds and non-words. She can talk incoherently for ages if in a mind to do so, and probably thinks she's talking normally. Sometimes she'll just sit and shout sounds repeatedly, in what seems to me as frustration. She hasn't been able to read or write for some years, and cannot follow most tv, but likes nature pictures. Nearly two years ago, she forgot how to walk.
She cannot weight bear, and thus can't walk and thus cannot go to a toilet, spends all her time in bed or chair. Whilst she can't usually follow instructions, she does allow me to brush her teeth, comb and occasionally wash her hair, and after an initial struggle I do get to cut and file her finger nails and toe nails. She cannot handle or cope with cutlery and thus, I feed her food and drink. Her appetite is greatly diminished. Medications are cut in two and hidden in cereal. She's still able to swallow normally. She gets agitated and verbal (noises) when carers come to change her pads, clothes or the bed, but soon forgets that and calms down, until the next time! Music is a great calmer. She's mostly stopped seeing non-existent people in the room or the garden as she used to.
To think this may go on for years and years like this is really really awful for her, for me, for all the family who she sometimes seems to recognise but mostly not.
What a life!
I've had enough.
I'm not me anymore. She's not been her for years.
We're here, although not all there.

@Chizz, I'm sorry you are at the stage you are. Living with this disease is so difficult both for the pwd ,carer and wider family.

We are not at your stage ,only 3 years after diagnosis ,and the decline has been quite quick. Just starting with the incontinence, very unstable poor mobility and nonsense conversation. OH abstract thinking is now non existent. Conversation is muddled reality and fantasy, or half sentences or random words!
This morning I was looking for the TV remote ,I was offered a half filled cup of coffee😂 He has very little comprehension of what I'm saying and is unable to follow instructions.

Yesterday OH went for a chest x-ray. I was slightly annoyed that the radiographer was about to abandon the attempt after asking him twice to stand closer to the machine! I said we weren't abandoning and continued to help OH to comply. I thought radiographer would have had more patience and compassion , especially as he said he'd been doing the job 53 years! Maybe time he retired.

My OH told me the other morning that I was trying to kill him when I tried to get him to put his dentures in his mouth. Oh .. and that the bath sponge was dangerous.

I know they'll be worse to come as we are moving towards it at pace. . Trying to make the best of a raw deal and finding humour to counterbalance.
Best wishes to you as you continue on the journey

 

[Jerseygirl]

T

I know your's is an old post but it is pertinent to my OH, for whom I've been solely caring for 7 years so far, who can speak lots of words, but only three or four in a row at any one time, before going in to sounds and non-words. She can talk incoherently for ages if in a mind to do so, and probably thinks she's talking normally. Sometimes she'll just sit and shout sounds repeatedly, in what seems to me as frustration. She hasn't been able to read or write for some years, and cannot follow most tv, but likes nature pictures. Nearly two years ago, she forgot how to walk.
She cannot weight bear, and thus can't walk and thus cannot go to a toilet, spends all her time in bed or chair. Whilst she can't usually follow instructions, she does allow me to brush her teeth, comb and occasionally wash her hair, and after an initial struggle I do get to cut and file her finger nails and toe nails. She cannot handle or cope with cutlery and thus, I feed her food and drink. Her appetite is greatly diminished. Medications are cut in two and hidden in cereal. She's still able to swallow normally. She gets agitated and verbal (noises) when carers come to change her pads, clothes or the bed, but soon forgets that and calms down, until the next time! Music is a great calmer. She's mostly stopped seeing non-existent people in the room or the garden as she used to.
To think this may go on for years and years like this is really really awful for her, for me, for all the family who she sometimes seems to recognise but mostly not.
What a life!
I've had enough.
I'm not me anymore. She's not been her for years.
We're here, although not all there.

Hi. thank you for your post. Your words resonate. Its certainly hard and unfair all round and hope, one day, a cure is found for this awful disease.

 

[LewyDementiaCarer]

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

I just want to thank you for sharing this, we are entering the last/end stage yet she has still retained some ability to smile & giggle, and also speak & communicate verbally, (although it's becoming more limited every week), but recently she needs armrests in bed to stay sat up (we use extra pillows), and now we are noticing that she is struggling more to hold up her head at times.

 

[Tricot]

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

I'm sure it might be useful if I could read it. It's unfortunate you haven't returned to note the responses.

 

[Lawson58]

On a whim I decided to look at a Donepezil study:

AD2000 Trial - A reliable assessment of the efficacy and safety of donepezil and aspirin in Alzheimer's Disease

AD2000 Trial - A reliable assessment of the efficacy and safety of donepezil and aspirin in Alzheimer's Disease.

www.birmingham.ac.uk

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.

My husband took Asprin and ended up in hospital with an internal bleed.

 

[Saralara]

I know your's is an old post but it is pertinent to my OH, for whom I've been solely caring for 7 years so far, who can speak lots of words, but only three or four in a row at any one time, before going in to sounds and non-words. She can talk incoherently for ages if in a mind to do so, and probably thinks she's talking normally. Sometimes she'll just sit and shout sounds repeatedly, in what seems to me as frustration. She hasn't been able to read or write for some years, and cannot follow most tv, but likes nature pictures. Nearly two years ago, she forgot how to walk.
She cannot weight bear, and thus can't walk and thus cannot go to a toilet, spends all her time in bed or chair. Whilst she can't usually follow instructions, she does allow me to brush her teeth, comb and occasionally wash her hair, and after an initial struggle I do get to cut and file her finger nails and toe nails. She cannot handle or cope with cutlery and thus, I feed her food and drink. Her appetite is greatly diminished. Medications are cut in two and hidden in cereal. She's still able to swallow normally. She gets agitated and verbal (noises) when carers come to change her pads, clothes or the bed, but soon forgets that and calms down, until the next time! Music is a great calmer. She's mostly stopped seeing non-existent people in the room or the garden as she used to.
To think this may go on for years and years like this is really really awful for her, for me, for all the family who she sometimes seems to recognise but mostly not.
What a life!
I've had enough.
I'm not me anymore. She's not been her for years.
We're here, although not all there.

 

[Saralara]

@Chizz thank you for your post. I could identify with so much of it. My mum has had a rapid decline over the past 9 months. It's kind of reassuring to read about other people's experiences and how they see the symptoms emerging in their loved ones. I am constantly shocked to see how my mum is changing so rapidly. Her old life and who she was has gone. My life has changed and has revolved around her as have no siblings. Its so hard to take it all on board but I feel that I don't have a choice. However I know I'm not alone in my struggle. So many others out there are living this life too. 😔