Don’t understand the moderate/severe category

[Kennyboy]

hello
I’m new to all this having just recently started caring for a family member with Alzheimer’s she was diagnosed 6 months ago with moderate/severe but what I don’t understand is which part of the stage is she in, surely it would be better to have those two as separate categories. I’ve looked at the symptoms of both and realise she has none of the severe ones she is displaying some of the moderate ones. So my question is why do they put the two together and put it on medical records when it is not an accurate reflection of the situation for something as serious as Alzheimer’s surely it should be termed either moderate or severe perhaps someone with much more experience and knowledge here explain this to me. Thank you

 

[Grannie G]

Hello @Kennyboy

These stages are guidelines only because everyone is different and as you have found out they overlap. Your family member`s diagnosis is moderate/severe because they will present some, but probably not all symptoms from either category.

 

[Duggies-girl]

18 months ago a doctor described my dad as having mild alzheimers. My thoughts were, No he is way past mild because he had a short term memory of less than a minute. Now I kind of get it, although dad is getting worse he is nowhere near severe, probably mild heading to moderate.

He cannot live alone, would not go to the kitchen to get food, rarely washes but shaves very often. Can't turn on the TV but likes to move things. He can still hold a very good conversation (in the moment) he still has a razor sharp wit and he can still take himself to the toilet. Mild according to the doctor and I agree with him.

I think of the stages as fluid with not all changes happening at once.

Dad was diagnosed over 2 years ago but I knew he had it long before that and my mum often spoke of his memory problems and she died 8 years ago so it's been a while..

 

[Lawson58]

My husband was given a diagnosis of 'atypical' Alzheimer's over five years ago. Words like early, moderate, severe have been used in any discussion with his geriatrician.

Since then, he has been given the labels of frontovariant Alzheimer's, non amnesiac and now non classical which indicates to me that he doesn't fit any of the usual pictures of the disease. He has only mild short term memory loss but cannot recall the first thirty years of his life. He still plays bridge but cannot drive a car or use a mobile phone.

I suppose if I had to categorise him, I would say he has a slowly progressing form of the disease but some of his symptoms are mild and some moderate.

And he has good days and some bad days. I don't think it matters too much about whether the person is at moderate or severe as some of the effects of the disease may overlap or may not even be an issue.

When the experts have finally worked out what is Alzheimer's and what isn't, then labels might be worth something.

 

[Kennyboy]

Thank you for your replies that does make it clearer for me to understand, if I’m understanding correctly the stage the medical professionals say someone is at is just a guideline as the stages do seem to overlap and you can pick bits of behavior/symptoms from a few stages. It also seems to vary from day to day, the thing I find the hardest is the demanding behavior and rudeness which does happen. There is no doubt that this is a very cruel illness which destroys lives, it’s hard to know when my sons Nan became symptomatic but it looks like 8 years plus she is currently 78 does the illness progress quicker because the person is elderly or not? There is so much I need to learn, thank you again for your helpful replies x

 

[Helly68]

I think a lot around disease progression in Alzheimers is not well understood. Apologies, I am sure that wasn't what you wanted to hear.
One of the few areas where I think most members would agree affects disease progression is a traumatic event. By this I mean, for example, a fall needing hospitalisation, a urinary infection (these often have a very adverse effect, but that can improve with treatment), or an admission to hospital.
My mother had a burst appendix, requiring emergency surgery and a stoma. Apart from the obvious physical issues of getting over an operation in your eighties, the really noticeable thing was the steep decline in her capacity - language, ability to move around based on knowing where she wanted to go, increase in agitation etc. This has improved a bit, but most carers notice a steep decline and increase in dementia symptoms in these circumstances.

 

[marionq]

All of the above is quite true. I found over the years that if I consulted the Seven Stages of Alzheimer's online I could plot reasonably accurately which stage my husband was at. This was possible because he seemed to be classic Alzheimer's with loss of short term memory his main problem. The other behavioural issues stemmed from that. Someone who has mixed dementia or one of the less well known dementias must be harder to place on the spectrum.

 

[Duggies-girl]

Yes I agree very much with @Hellie68 Dad had pneumonia early this year and while in hospital he had 3 falls, one time smashing his head, he also suffered a small heart attack followed by a stroke. He came home after 3 weeks and his mobility is much reduced as is his memory and capabilities.

 

[Sirena]

it’s hard to know when my sons Nan became symptomatic but it looks like 8 years plus she is currently 78 does the illness progress quicker because the person is elderly or not?

I'm not sure how much difference the age makes. My mother is now 84, she was diagnosed with Alzheimers about 4 years ago, she had minor symptoms for about a year before that. I'd say she is 'moderately severe', stage 6 according to this scale

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

I have no idea how long she will continue, it could be another 5 years. She fell and broke her hip 18 months ago and I thought the surgery and hospitalisation would cause a significant downturn, but it didn't, she was back to her baseline within a month. Unfortunately there is no way of predicting the course of this disease.

 

[Duggies-girl]

I think that puts dad around half way through stage 5 moderate alzheimers. Seems he is a perfect text book case. Mum used to tell me about his memory and she died 8 years ago so he fits this perfectly.

Dad's nearly 90 and the stages say that he could go on for another 5 years, his brother was almost 95 when he died (although he didn't have dementia) so this is possible.

I think he is likely to be in a care home by this time next year. Poor dad hasn't a clue that he has anything wrong with him but I don't think I could cope with stage 6 and I know he would not want me to (in his previous life that is) Hate this disease.

 

[Lawson58]

Thank you for your replies that does make it clearer for me to understand, if I’m understanding correctly the stage the medical professionals say someone is at is just a guideline as the stages do seem to overlap and you can pick bits of behavior/symptoms from a few stages. It also seems to vary from day to day, the thing I find the hardest is the demanding behavior and rudeness which does happen. There is no doubt that this is a very cruel illness which destroys lives, it’s hard to know when my sons Nan became symptomatic but it looks like 8 years plus she is currently 78 does the illness progress quicker because the person is elderly or not? There is so much I need to learn, thank you again for your helpful replies x

Again, progression is very much an individual thing. My husband is 80 this month and is declining slowly. Some people live twenty years with the disease and others go downhill at a much faster pace. You will find that none of the professionals will ever give you an idea of life expectancy because it is so unpredictable. My husband was so ill with heart disease six years ago that no one thought he would see out a year but he is still here and pretty much enjoying life.

 

[Lynmax]

Maybe I'm just burying my head in the sand but I don't tend to think about stage mum is at, she is just someone with a diagnosis of Alzheimer's who is gradually getting worse and more in need of support. She has good days and bad days but I think worrying about which stage she is at would not help me support her. After the diagnosis she was discharged from the Memory Clinic to her GP and we have had no further help from professionals.

Luckily her health is good, she is fully continent ( well, maybe a few little leaks but she has had five children!) and can just about live alone with a daily visit from one of her children. She has no memory for more than a few seconds, forgets to eat and cannot use most technology including cooker, microwave, central heating but can still make a cup of tea, lock the door, turn on the TV, use a phone and read a newspaper.

At the end of the day, it doesn't matter what stage she is at or how long before she moves to the next stage. In fact, I think it would depress me if I thought too much about it!

 

[Dimpsy]

I'm with you @Lynmax, my mum is 89 and was formerly diagnosed with Alzheimer's in October 2017, with the doctors opinion of the Az presenting at least four years before then.

I have studied the stages list to try and categorise mum and have come to the conclusion that my mum is unique - she fits in all the lists - but not necessarily in the right order! (Get it?!)

She lives with us, couldn't exist on her own, can't even remember how to make a cup of tea these days - but - she is a prolific reader, word searcher and puzzler, loves TV documentarys (latest David Attenborough series is hugely popular). Good raconteur, healthy (vegetarian) appetite, continent, showers every day, takes pride in her appearance and likes new clothes. The only marked change was when she had a UTI in October 2019, but she came back to type after the antibiotics worked their magic.

It has crossed my mind if mum's stability is down to the Donepezil, if so, long may it continue.
As a family, we have decided that mum / dementiia is a conundrum and we take each day as it comes. Perhaps in the future, mum will conform to the stages, in the meantime, she does her own thing!

 

[Grannie G]

I`m another who paid little attention to the stages. I read them in the early years but then decided it was too complicated to try to work out where my husband was because there were so many overlaps.

Even day to day behaviours and abilities were subject to change and this happened throughout his dementia. So often I thought I had found a strategy for managing the behaviours only to find it didn`t work the following day.

My husband also demonstrated fluctuating abilities. One day he would be steady on his feet, another day unsteady. One day he slept a lot. Another day he would be quite active. One day we would manage a good day out, another day he would be totally disinterested.

It really was all about seizing the good days and accepting those which were not so good.

 

[Sirena]

I agree re fluctuations. Sometimes I think my mother has deteriorated, she can't focus on anything and doesn't even know who I am, then at the next visit she's much more focussed. As she in a care home I see people at various stages and I found the categories a good way of 'defining' it. But you can rely on dementia to defy your expectations in one way or another.

 

[MaNaAk]

I had the scores the wrong way round! I thought that 1 was good and 30 was awful until I realised it was the other way round. When I was told that dad had a score of 22 both dad and I were depressed and then he achieved the same score at the next one and both of us were pleased. The next time he scored 16 and I thought he must have improved eventhough I could see the symptoms but then I was told that this is worse when his score became 9 I was in tears because I realised that it wouldn't be too long before he would go into a home. When he went into the home he I thought he seemed better at first and he was happy with twenty-four hour care.

I missed him but I knew I had done my best and I created many more happy memories for us both.

MaNaAk

 

[Kennyboy]

Thank you all so much, I realise that my sons Nan does cross over several of the stages, we have had two particularly bad days today and yesterday her behaviour has been aggressive and very stroppy and not engaging with us just criticizing everything. She has had a number of accidents over the last few weeks and I don’t know if this is her condition worsening or just accidents due to upset tummy. It’s a very hard job and I think that after Christmas we will have to review things to try and get her some medication to help sleep and some to help the aggression. I could not put up with 7 days of behaviour like we have had for the last 2 days and on very little sleep, I’m wondering if she is coming to the end of stage 5 and progressing to 6 I just don’t know. Let’s hope for a better day tomorrow night all and thanks again x

 

[marionq]

Why wait until Christmas? Ask the GP for a sleeping pill now.

 

[Dimpsy]

Definitely start the ball rolling today and make an appointment - for your sake as much as your PWD.
If you can't function because you're tired, you can't give your best attention to PWD.