Middle to later stages of dementia

Menzies

Registered User
Oct 4, 2016
1
0
I have never used this website before so apologies if I am on the wrong road! I notice 'posts' have been placed under the 'thread' of Middle to late stages of Dementia may I ask has it been your individual selves who have made the decision middle to late/the GP/this website?
The reason I ask is that I have asked my mum's GP for a re-assessment of her (she has Alzheimers) the GP has said no there are to many people waiting for an initial assessment without others going back for a second one - which I appreciate but how do I know when mum has moved into the category middle to late stage?
 

CAD

Registered User
May 1, 2015
13
0
My husband has Alzheimer’s and was wondering what stage he is . He is at the stage he cannot walk without help he shuffles when walking , now dribbling , needs help with all personal care , changing , bathing , in and out of bed etc , his speech is very poor .
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
I wondered this too with my partner. For some of us - me included- it makes things more bearable when we know 'where we are at'.

I googled and there are lots of answers.

The main one being that no two people progress through dementia in the same way. There is, however, a 'scale' of 1-7, 1 being someone who does not show any signs of dementia and 7 being the extreme final stages.

I reckon my other half is somewhere moving from stage 4 into 5 - it helps me to think that, but it is not scientific, and does not do any good as there is no time scale as to how long each person stays in each stage.

www.unforgettable.org

has these stages.

hope this helps
 

Kevinl

Registered User
Aug 24, 2013
6,361
0
Salford
Hi Menzies, welcome to TP
A lot of it depends on where you live, my wife was sent an appointment by the memory clinic ever 6 months, in other areas once the memory clinic has diagnosed they discharge back to the GP.
Even though my wife's been in a care home for 2 years the memory clinic still send a nurse to do an assessment every 6 months and other residents in the same health authority, other people from adjacent health authorities their relatives tell me were discharged back to the GP and have never see anyone from their memory clinic since.
The issues with "stages" is it's all a bit meaningless in that someone can assess well in some area and badly in others where someone else scores the same but the areas they score well in are the reverse, overall but they present completely differently.
Late stages for me is; double incontinent, unable to speak, reply or respond to their name, limited in any mobility if any, require feeding and even then people can go on for years.
My wife's been in an EMI nursing home for 2 years next month and if you'd asked me then which of the residents would still be there and which wouldn't I would have got it seriously wrong. I can't believe that some of them who looked so bad 2 years ago are still there, but some of the ones who originally appeared way fitter and able aren't.
To be fair to the NHS if in your area there issues getting an assessment then you can see why they don't want to do a second one out of interest, the findings will be no use to them as it wouldn't affect her treatment unless certain specific behaviour which can be medicated had started, things like; paranoia or aggression relating to her AZ, the GP may re-refer for things like that.
K
 

Sirena

Registered User
Feb 27, 2018
2,331
0
My mother was referred to the memory clinic by her GP, and the clinic then sent follow-up appointments every six months. Initially she was diagnosed with mild cognitive impairment, then 'moderate' dementia and then a year later, 'severe'. She moved to a care home earlier this year and at a recent review meeting the care home manager and I agreed she was around late mid-stage.

If it helps at all, another member posted a link describing the various stages. There seem to be various ways of classifying the different stages, the link is an American site. I found it helpful, but it gives considerable detail so please don't click if you think you may find it upsetting.

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
 
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Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
It all depends on the individual as well & what form of dementia they have. Or forms. My mum has mixed dementia, predominantly vascular & then some Alzheimer’s.
She has sped through a lot of the phases listed as above.
From my research & from what her consultant said she is in the later stages of dementia.
She had a very big decline with some TIA’s in December but has stabilised since then.
On first glance, some medical staff have first thought she is in the early stages but once they get to know her then they have agreed, she is in the later stages.
You can sort of have a very repetitive conversation with her but she has a very short term memory, less than 5 minutes retention so the conversation goes round & round. She cannot walk without a frame, she cannot wash & dress herself without assistance. She can still eat food & drink unaided. Anything else, she needs help with which is why we decided that 24/7 care in a nursing care home was the way forward for her.
 

myss

Registered User
Jan 14, 2018
449
0
www.unforgettable.org

has these stages.

hope this helps

I'm curious about this as I am sure my dad's diagnosis of 'Onset Dementia' has long progressed further over the years since then. I copied the information below from the link above as there's a message asking for your email address that pops up covering it. There's a few links that was on that site included but I'm not sure if they will work below:
Three basic stages of dementia
1. Early – when symptoms are mild and, despite being quite forgetful, most people are still living relatively independently. They might also still be driving or working.

What might help: A wide range of memory aids have been created to help people with mild symptoms of dementia to stay independent and healthy. Take a look here to find simple day clocks which have been shown to change lives, pill dispensers, simple phones and much more.

2. Middle – this is the longest stage and can last many years. Forgetfulness and confusion gradually becomes more pronounced, your loved one might also become withdrawn, depressed or moody, and need an increasing amount of help with daily life.

What might help: Memory aids that help to ease confusion and boost safety at home are particularly useful for those with moderate symptoms of dementia. This range of products is designed to increase safety whilst also providing entertainment and stimulation. Take a look here.

3. Late – most people at this point become increasingly frail, they may not talk or communicate very much and can appear to be in ‘a world of their own.’ They often need round-the-clock care.

What might help: Advanced symptoms of dementia can bring new challenge but there are many products that can help with everything from bathing and dressing to relaxation and sensory and reminiscence therapies. Go here for more inspiration.

BUT whilst this three-stage theory gives a general overview of dementia, it can seem too simplistic for anyone who is living with the condition. Many people therefore find it more useful to see the journey broken down further (see below) and explained in more detail.


The seven stages of dementia
This offers a more clearly defined picture of the whole dementia journey.

1. Normal – no symptoms of dementia or Alzheimer’s are apparent, though changes in the brain might already be occurring – these can happen several years before symptoms emerge.

2. Normal forgetfulness – this involves minor memory problems which can easily be put down to ‘senior moments’ or stress.

3. Mild Decline – loved ones may begin to notice subtle changes and signs that something ‘isn’t right.’ You might be forgetting appointments or frequently losing your purse, or keys, in which case a simple object locator might come in very useful. If you seek advice from a doctor at this point you could be told you have Mild Cognitive Impairment. Experts believe this stage can last up to seven years.

4. Moderate Decline – this is when symptoms become clearer to everyone. The person with dementia might find it difficult to manage money or pay bills, or remember what they had for breakfast. If they visit their doctor at this point, and undergo a Mini Mental State Examination (MMSE) it’s likely they will be diagnosed with dementia. The average length of this stage is around two years.

5. Moderately Severe Decline – loved ones may need more help with day-to-day living during this stage. Whilst they can probably still bathe and take care of other personal needs on their own (such as using the loo), they could find it difficult to dress appropriately or be unable to remember simple facts about themselves, such as their address or phone number. However, they usually recognise family and friends and can recall events from decades ago (especially their childhood) with great clarity and really enjoy reminiscing. A memorabilia pack like this one or a talking photo album like this could bring a lot of pleasure. On average this stage can last around 1.5 years.

6. Severe Decline – this is the point at which many people with dementia move into care homes or need constant supervision at home. You might need to help them with bathing and they may also become incontinent which can be very distressing, although there are now some very discreet ways to manage it and maintain dignity. You might also notice changes in their personality and behaviour – such as anger and aggression– which can be upsetting and difficult to cope with. However, although they might be very confused, they often still know and recognise the people closest to them – which can be some comfort. Experts believe this stage can last, on average 2.5 years.

7. Very Severe Decline – your loved one might not reach this stage, since many people with dementia pass away before it happens, often as a result of other health conditions such as strokes or heart attacks. But if they do get this far, they’ll need round-the-clock care and the support of professional carers (if they haven’t already got this). Whilst this stage can undoubtedly be harrowing for loved ones, it’s important to remember that the person with dementia may not experience it in the same way, since they no longer really understand what’s happening. Providing everyone does their best to keep them comfortable and calm, there’s every chance this stage can end peacefully for them – and for you.

How long do dementia stages last?

It’s very difficult to put a time scale on the illness at this point. However, research shows that if no other medical conditions emerge, this final stage of life can last up to five years.

Good to know
Although these stages of dementia are well documented and researched, it’s best not to dwell too much on the finer details, or think too much about ‘which stage’ you might be at. Everyone’s dementia journey is unique – some people will move slowly through some stages and quicker through others. It’s far more important to make the most of where you are now, and to focus on what you can do, rather than worry about what you may, or may not, be able to do later down the line.
 

Cazzita

Registered User
May 12, 2018
617
0
My mother was referred to the memory clinic by her GP, and the clinic then sent follow-up appointments every six months. Initially she was diagnosed with mild cognitive impairment, then 'moderate' dementia and then a year later, 'severe'. She moved to a care home earlier this year and at a recent review meeting the care home manager and I agreed she was around late mid-stage.

If it helps at all, another member posted a link describing the various stages. There seem to be various ways of classifying the different stages, the link is an American site. I found it helpful, but it gives considerable detail so please don't click if you think you may find it upsetting.

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

Just read this link and yes, upsetting and horrible. At this stage (mum to get scan results this week) I feel that it is awful that people are allowed to go on living like this. I know I might change my mind as it progresses but right now it all seems so inhumane - we don't allow dogs to suffer to we so why do we allow humans? :(
 

Theresalwaystomorrow

Registered User
Dec 23, 2017
343
0
The only positive I can think of is that it keeps people in jobs in these homes
( because general staff are lovely and underpaid)
But seriously it’s the most devastating disease there is and the government needs to wake up!
 

Cazzita

Registered User
May 12, 2018
617
0
The only positive I can think of is that it keeps people in jobs in these homes
( because general staff are lovely and underpaid)
But seriously it’s the most devastating disease there is and the government needs to wake up!

Yes, it damn well does. So how are we going to make it wake up? I will write to an MP as I feel I need to direct my anger somewhere.... Thanks for your reply Theresa
 

kindred

Registered User
Apr 8, 2018
2,937
0
Yes, it damn well does. So how are we going to make it wake up? I will write to an MP as I feel I need to direct my anger somewhere.... Thanks for your reply Theresa
Please do, write to your MP I mean. Several of us are doing what we can to raise the profile. It is hard, they tend to show dementia as mainly comprising memory loss, but as we know it is far more brutal than that. warmest, Geraldine
 

Cazzita

Registered User
May 12, 2018
617
0
Please do, write to your MP I mean. Several of us are doing what we can to raise the profile. It is hard, they tend to show dementia as mainly comprising memory loss, but as we know it is far more brutal than that. warmest, Geraldine

Thank you @kindred, the more I read the more incensed I get - TP is so eyeopening though but seriously, so much more needs to be done for people with dementia and care. There is not enough understanding or compassion and it simply MUST change! I will be writing to the MP for sure. x
 

garfield3

Registered User
Jun 30, 2018
417
0
Hello to everyone who wants to know what stage their LO is at.

I sometimes feel it doesn't matter because we all know the end game. However, I believe it is easier to handle if you know what is coming. I don't like surprises, but everyone is different. I have found this site very useful since it breakers things down into sub -sections. It can be difficult reading fo those of you who are new to this game.

Clinical Stages of Alzheimer's- Fisher center

It won't let me paste the link, but will try again.

Hope this helps.
 
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LoveU

New member
Jul 24, 2018
3
0
My mother has dementia and has had it at least 8 years or more. I had to ask the doctor to check her for dementia or Alzheimer but he just asked a few simple questions which she could not answer. He said she had dementia due to her having 3 mini strokes. I had to put her in a nursing home about 4 years ago. I think my mum is at the late stages because she cannot feed herself, she tries to talk every once in a while and it's jibberish, every once in a while we might be able to understand a few words she say. She cannot walk but she haven't been able to walk for at least 4 1/2 years. She cannot feed herself and she has delayed swallowing, get choked some, she has just started to begin to not open her mouth to eat. She sleeps a lot now and is incontinent.
I'm having a hard time with her illness, it is so sad but I sure don't want to see anyone put to sleep like a dog. Call it selfish but I cannot do God's job. She also has COPD and is in and out of the hospital because she can't breath. Pray for her and me and I will also pray for you and your love ones.
 

garfield3

Registered User
Jun 30, 2018
417
0
My mother was referred to the memory clinic by her GP, and the clinic then sent follow-up appointments every six months. Initially she was diagnosed with mild cognitive impairment, then 'moderate' dementia and then a year later, 'severe'. She moved to a care home earlier this year and at a recent review meeting the care home manager and I agreed she was around late mid-stage.

If it helps at all, another member posted a link describing the various stages. There seem to be various ways of classifying the different stages, the link is an American site. I found it helpful, but it gives considerable detail so please don't click if you think you may find it upsetting.

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

Of all the sites, I find this one th best.
 

Cazzita

Registered User
May 12, 2018
617
0
@LoveU . How sad for you and your mum. I am a Christian but I am so torn about this suffering. To me, it is too undignified and prolonged for anyone to suffer especially when the laws/rules and regulations make it so much more difficult to wade though. I will be praying, regardless, but I will also be praying for a swift end to it all for my mother.
 

BLIP

Registered User
Jul 22, 2018
66
0
Those of you who've read my posts know that my M.I.L. was put into a care home against our wishes by a bully SW. Yes the break is nice but in a strange twist of fate we actually miss her. I asked the care home what stage they thought she was at as they work with PWD all day and night and in their opinion she is middle stage. My M.I.L. is an only child as is my husband so it's difficult to understand that M.I.L. hasn't asked for us since being in the care home, even though we saw her every day previous to her hospitalisation for the past 10 yrs since living on the next road to us. waiting for a call from the care home manager after she's spoken to the S.W. to see if we're allowed to visit.
 

BLIP

Registered User
Jul 22, 2018
66
0
My mother has dementia and has had it at least 8 years or more. I had to ask the doctor to check her for dementia or Alzheimer but he just asked a few simple questions which she could not answer. He said she had dementia due to her having 3 mini strokes. I had to put her in a nursing home about 4 years ago. I think my mum is at the late stages because she cannot feed herself, she tries to talk every once in a while and it's jibberish, every once in a while we might be able to understand a few words she say. She cannot walk but she haven't been able to walk for at least 4 1/2 years. She cannot feed herself and she has delayed swallowing, get choked some, she has just started to begin to not open her mouth to eat. She sleeps a lot now and is incontinent.
I'm having a hard time with her illness, it is so sad but I sure don't want to see anyone put to sleep like a dog. Call it selfish but I cannot do God's job. She also has COPD and is in and out of the hospital because she can't breath. Pray for her and me and I will also pray for you and your love ones.


My husband is a clergyman and he is putting you on his prayer list for sick people and the dying and the loved ones left behind. I hope your mom goes peacefully in her sleep when it's her time. God bless you.
 

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