What are the stages of dementia? How will I know when it's time to move my mum to a c

[Pinkfizz]

What are the stages of Alzheimer's/ dementia? How will I recognise where my mum is at
How will I know when she truly cannot live in her own home and needs caring for full time.

She can't/ won't discuss/ accept the diagnosis
It's a surprise each day to her that she can't function. She is physically disabled too. She is house bound due to lack of concentration motivation confidence etc
She has a carer twice a day increasing to 3 times next month she can't really prepare meals but says she can she forgets to drink she can't manage any tasks. Her meds are given by carers
Some days are better than others
Incontinence is creeping in occaisionally

She is adamant she doesn't want to leave her home even for respite and just cries and has a tantrum like a toddler.

Sorry for rant :-(

 

[Debjac]

I feel your pain I have had mum living with me for 4 years and watched her going through all the things you have mentioned it is heartbreaking but it sounds like the time has come when your mum needs full time care before things get much worse silly things like I have to check the cooker every time I walk past as mum likes to turn the knob and put gas on then denies all knowledge I lost my mum about 3 years ago but very occasionally I still see glimpses in the person she has become do what you think is best for her she won't like it to start with but will soon adapt and won't know any better xxxx


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[marionq]

You can look up the Seven Stages of Alzheimer's on the Society's website. It is a guide so don't get too hung up on it. Useful but not prescriptive.

 

[Witzend]

I think it's time for a care home when

for whatever reason(s), the carer(s) can't cope any more

And/or
The person isn't safe to be left alone at all any more.

Others may think differently, of course,

I don't think there's much point in discussing either the diagnosis or care homes with your mother. People with dementia are often unable to understand that there's anything wrong with them - they can't remember that they can't remember anything, if that makes sense.
And hardly anyone, with or without dementia, will say they are happy to go into a care home. It's often the case that you just have to do/arrange what's necessary, and get around it with 'love lies' - it's what the dr ordered, it's just ' convalescence' for a while, it's just until the dr thinks you're a bit better/stronger, it's just while we have the decorators/plumbers in and the house is upside down (whether true or not) - whatever sounds good and suits your individual circs best.
All the best.

 

[stanleypj]

I don't understand why people are so interested in the stages. We're talking about a very unpredictable condition and a human construct that attempts to make some sense of it. The important things surely are what the person can still do, what they can't, how they might be helped to retain their abilities, what they can't do any longer, and how these 'losses' might be compensated for.

 

[marionq]

This is true Stanleypj but I had an acquaintance at one of the groups who asked me constantly what would happen next. I didn't know any more about it than he did but I found that referring him to the seven stages website gave him something to focus on.

 

[Lawson58]

I don't understand why people are so interested in the stages. We're talking about a very unpredictable condition and a human construct that attempts to make some sense of it. The important things surely are what the person can still do, what they can't, how they might be helped to retain their abilities, what they can't do any longer, and how these 'losses' might be compensated for.[/QUOTE


And the experts don't even agree if there are five stages or seven, and then the descriptions in the stages are really only guides and nobody seems to fit exactly into all the little boxes.

So OH was diagnosed almost three years ago with 'atypical Alzheimers' which I have now know doesn't mean much except that the consultant didn't really know. He has now referred him on for further testing. GP believes he has mixed dementia but that is not a diagnosis.

All I know is that he has some form of dementia and regardless of the stage he is now at, he will eventually get to the next one - whatever that means!

 

[Witzend]

My mother certainly went through 'stages', some longer than others and some where the change happened quite suddenly.
Whether they corresponded to 'official' stages I don't know, but it was a definite, staged, progression of the disease. Though with my mother the stages were spread out, since she must have had the disease from her very early 80s until she died at 97.

There was the 'very forgetful but still just about managing' stage; the 'no longer managing' stage; the 'nasty' stage, where she was accusing all and sundry of stealing and plotting against her; the stage where she still knew her own children but talked a lot of wanting to visit her long dead parents; the stage where she no,longer knew us - I was just a 'nice lady' who came to visit (this one happened very suddenly); there was the stage of no longer being able to get in or out of a car, and forgetting how to use the loo (also a sudden one); later still was the stage of incontinence, being unable to hold any sort of conversation, and not responding to anyone or anything.

I haven't compared these to the 'official' ones, but I expect there will be general correlations.

I daresay information about stages can be useful for those who are still new to it all - may help them to understand what they're dealing with.
It's an awful long time ago now, but when we were very new to it with my FiL, I thought that all dementia meant was someone gradually becoming more and more forgetful.

 

[netsy22]

Useful guide

I have actually just today looked up the stages because I want to know where mum is and what will happen next. (If I was ill myself I would want to know the prognosis.)
I found the best description is the Global Deterioration Scale (GDS), which start from no dementia to very severe in 7 stages (google it). I also found on another site, average duration:
Stage 4: 2 yrs
Stage 5: 1.5 yrs
Stage 6: 2.5 yrs
stage 7: 2.5yrs.
So from onset or diagnosis it could take 8-9 years to the end.
I reckon by this description I will be looking for a care home for mum when she gets to stage 6. (She is at 5 at the moment.)
Of course this is only a rough guide, people progress at different rates and have the symptoms in varying degrees or not at all, but I found it VERY useful. Also mum does not have alzheimer's or vascular - I believe these have clearer-cut stages.
I am also keeping this guide to watch myself and husband for signs!!!!!

 

[lemonjuice]

I have actually just today looked up the stages because I want to know where mum is and what will happen next. (If I was ill myself I would want to know the prognosis.)
I found the best description is the Global Deterioration Scale (GDS), which start from no dementia to very severe in 7 stages (google it). I also found on another site, average duration:
Stage 4: 2 yrs
Stage 5: 1.5 yrs
Stage 6: 2.5 yrs
stage 7: 2.5yrs.
So from onset or diagnosis it could take 8-9 years to the end.
I reckon by this description I will be looking for a care home for mum when she gets to stage 6. (She is at 5 at the moment.)
Of course this is only a rough guide, people progress at different rates and have the symptoms in varying degrees or not at all, but I found it VERY useful. . . .

Also, if you're thinking finances and whether there will be enough money, bear in mind that Stage 7 for those who get there can be much longer than that.
Some sites split that stage up into 6 sub-stages each between 1- 1 1/2 years giving a potential of 7- 12 years, just in stage 7. My own mother has 'stabilised' in stage 7d for nearly 3 years now for example and her sister was more than 6 years 7d-7e. Though to be fair she seemed to go from stage 6 - 7c fairly quickly, so I suppose that evens out. If they have a strong constitution they can survive so much, which would overtake many others.

Even so my mother was well into stage 6 before i moved her into a Nursing Home and after 5 years, having assumed she's have enough money to last her it is turning out not to be the case. Social Services placements are not always so good and certainly tehre's no way I could pay any 'top-up' fees for her.

 

[Lawson58]

I have just been going through the GDS, other material available via Internet and could say that OH has aspects ranging from MCI through to a little of stage 6 on GDS.

Which leaves me no further advanced than I was three years ago as he gradually gets a bit worse.

Most of the various articles I read stressed that they were guidelines only and that stages could be overlapping and that people can fluctuate as they progress. It would make life easier if we could put our PWD into neat little stages but it is never as simple as that. You can't rely on those stages to work out life expectancy either as that changes a lot depending on when PWD finally get a diagnosis and at best they are averages, not a good predictor for each individual.

 

[Chemmy]

This is the version I used to refer to.

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

My mum was in a CH for eight years and when she died, she's was at stage 7d/e and as she had Alzheimer's, rather than VasD or mixed dementia, I found it pretty accurate.

I am the type of person who likes to know what to expect next, whereas others prefer to take each day as it comes. Each to their own. Neither approach is wrong, in my book.

 

[Meanmum]

However much we may want to be able to predict what's coming, it's rarely that simple, & probably depends which part of the brain is most severely affected. For some people, loss of mobility & continence can occur well before loss of speech - for some the converse. Dad went from mobile (able to just about climb the stairs) and continent, via a bout of delerium, to unable to weight bear & doubly incontinent - this over a couple of weeks or less. His cognitive function, although very variable day to day, has not taken such a big hit - he's still managing complex words & sentences, not much of which makes sense to us, but does to him......
All we can do is support them the best we can at whatever stage they are at.

 

[Mal2]

I don't think we can go by 'stages', no two PWD are the same, only similarities.

My husband has had 'D' for 17 years. Changes have come gradually over a slow period of time, so as they are not noticed right away. Just a day, when something is noticed, different to a while ago.

It is only in the last 18/24 months, we have the double incontinence, not chatting so much, mobility, he now needs a wheelchair and I have a wheelchair adapted van to take him out. A hoist for washing and changing him etc, which is a godsend.

I've always had a 'good morning, how are you'? from him. Now I get a beautiful smile, when I say hello to him, but, I have to persist until, I eventually get one in reply. He is in good health, has a good appetite, although diabetic. He is a happy individual, and, I feel blessed he is still with me. I hope this will continue for a long time to come.

So I personally, do not think there are specific timed stages, that we can slot them into. It depends on the PWD. Whether they are healthy and physically able. Some suffer with their health, which affects their situation.

 

[Marnie63]

I agree, this business of 'stages' is very misleading. Mum had no 'stages'. She was fine until one day in October 2015 when she had a suspected stroke, and now she's not fine. If I look up the supposed 'stages' on line then she has gone straight to one of the final 'stages' as she's incontinent, cannot do anything or think for herself, never mind no memory whatsoever. Are the stages more aligned to Alzheimer's though, which I understand is more of a gradual decline? A friend's father has Alzheimers and I would say having seen him over the years, he probably has gone through stages.

But how you can apply stages overall to the many variants of dementia, I have no idea!

 

[Chemmy]

The link I gave relates specifically to Alzheimers, not the other dementias.

Clinical stages of Alzheimers

 

[Izzy]

I know that these clips are not what people traditionally think of when discussing the stages of dementia. I just found them very interesting when I was doing the University of Tasmania Online Course - Understanding Dementia.

https://youtu.be/eNYwyu5HhnY

https://youtu.be/vnQloCTT1yc

 

[istherelight?]

Thank you, Izzy. This is exactly how we have tried to be with my Mum, and continue to try to be.


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[Pinkfizz]

Thank you all for your thoughts and comments.
My mum was officially diagnosed back in December last year after a sudden and rapid and for my part unexpected decline in her ability
She travelled to goa independently in Feb 16. Cam back and had a shoulder replacement which seems to have been a significant event as when she came home from hospital this is when I realised things just weren't right.
She has suffered intermittently with low mood and anxiety and poor concentration. She has never been one of life's thinkers and tended to live in the moment
I think her deterioration has been very rapid or else we didn't spot it ???

 

[Witzend]

I have actually just today looked up the stages because I want to know where mum is and what will happen next. (If I was ill myself I would want to know the prognosis.)
I found the best description is the Global Deterioration Scale (GDS), which start from no dementia to very severe in 7 stages (google it). I also found on another site, average duration:
Stage 4: 2 yrs
Stage 5: 1.5 yrs
Stage 6: 2.5 yrs
stage 7: 2.5yrs.
So from onset or diagnosis it could take 8-9 years to the end.
I reckon by this description I will be looking for a care home for mum when she gets to stage 6. (She is at 5 at the moment.)
Of course this is only a rough guide, people progress at different rates and have the symptoms in varying degrees or not at all, but I found it VERY useful. Also mum does not have alzheimer's or vascular - I believe these have clearer-cut stages.
I am also keeping this guide to watch myself and husband for signs!!!!!

I think a lot will depend on the person's general health to start with.
My mother showed the first signs at about 81. She died in late stage Alz. at 97, having been in the care home since she was 89.
However she was very tough, and I do know she was unusual. During her time in the CH I saw several other residents arrive, decline, and quietly disappear. She broke a hip at about 91 or 2, so often the beginning of the end, but she recovered well and quite quickly. The anaesthetist who looked after her for the op apparently said, 'Boy, this is one tough old bird!'
My FiL, however, who had vascular dementia, and was extremely fit and healthy at the start at about 80 - still cycling and playing tennis - did not last more than about 7 years.