What stage of dementia are we at?

[Croneathome]

My mother’s never been formally diagnosed with dementia as far as I know (I know she’s had memory assessments, but I don’t know the outcomes because she doesn’t remember and her GP doesn’t tell us). But my sibling and myself are both agreed she shows fairly strong signs. She forgets words, and uses inappropriate ones rather than paraphrasing (e.g. traffic lights for roundabout); she forgets events and “invents” alternatives (i.e. a christening becomes a concert, because there was music); she cannot learn anything new (new mobile phone, door phone); she’s forgetting old skills (was a professional cook, can now barely cook for herself).

She’s been living in a retirement complex for about 18 months, and it’s been really good for her; prior to moving there, she was at the doctor’s 3 or 4 times a week and had been hospitalised several times for falls and delirium, but since moving there has ben to the doctor’s exactly twice.

My sibling visits at least once a week (I live abroad, so my contact is over the phone since she lost the ability to use Skype/Facetime).

We know that her symptoms get worse when she’s depressed. Yesterday she was depressed because she’d switched off the freezer (no idea why) and all the food had defrosted. She rang my sibling in a panic and sibling went to visit. She was trying to cook as much of the defrosted food as she could, but had the oven on the defrosting setting rather than baking/roasting. She admitted to my sibling that she couldn’t remember how the cooker or microwave worked. Sibling sorted it all out, then rang me to update me. Later, she rang me. Had no memory that sibling had visited her that day or that she’d had a problem with the freezer. However, she was depressed at the prospect of spending her upcoming birthday and then Christmas alone, because she had forgotten that she had been invited to spend both dates with sibling. The worst bit was that when I reminded her of this, she became suspicious because she couldn’t believe she would have forgotten something “so important”. This is the first time she’s been suspicious.

She still shops for herself, cooks for herself (somehow), goes for a walk every day, can shower and dress herself, keeps her flat relatively clean. But she doesn’t remember anything from one moment to the next, is forgetting life-long skills and invents things to fill the gaps in her memory. On the phone, her conversation is on a 3-5 minute loop which can go on for an hour or so. She knows who I am, but sometimes she clearly forgets who she’s speaking to and starts telling me about myself.

Where are we and what should we be planning for? Is this still mild cognitive impairment? My feeling is that we’re about to lurch into something much more serious, but at the moment she seems to be in a grey area between coping and needing residential care. Unsurprisingly, she has a history of sacking people we employ to check in on her and do a few care tasks.

Sibling and I both have POA for legal but not health matters, and sibling manages her finances. Our mother is 87.

Would she be persuaded to give you POA for health too? Or was she objecting to that? Then you could get information from the doctor. My dad's GP was very good in that he was clearly sympathetic and I went with him to the memory test appointments, so I could hear that he didn't know what year it was etc.

Sorry to say it does sound like it's worsening. I think it's hard to clearly say what's 'mild' but it's about her being safe in her environment. The retirement complex is evidently better than before though. As your sibling manages the finances, can you effectively book carers to come in so she can't sack them because they arrangement is with you?

She could sign a letter to the GP for them to share info with you, even the f you don’t have health POA, if that would help

Based on an evaluation I had done on a relative this week, this sounds as if it has moved on from mild cognitive impairment.

Try very hard to get Health POA now. She will not be allowed to grant it once she is deemed to not have capacity. You would have to do something like apply to the Court of Protection which would be much more difficult.

She needs an assessment from a memory clinic - this may be the start of a dementia.
It's awkward because you are abroad and your sibling is doing the leg work, but someone needs a conversation with your Mum to say they've noticed she has memory problems, would she agree to a family member accompanying her to GP to talk about her getting some help and referral to a Memory Clinic. There are treatments available for dementia but the problem with your mum going alone is that it's a lot to take in.
If she will not agree to this, write to her GP putting the examples from this post in. Explain that she is not likely to be able to action any plan she and GP make without help. GP can then talk to her about involving you and the benefits of this. GP may then make contact with you.
Your Mum may be aware that her memory is failing and she may be frightened/worried by this. Many people feel relieved to have a diagnosis - someone I know said she thought she was going mad, and it was a relief to know it was Alzheimer's as she could plan.
If your Mum is referred to a Memory Clinic they will strongly advise a family member attends to give information on what they are observing in terms of cognitive function. They will also advise her about planning her affairs eg giving Lasting Power of Attorney, claiming benefits, groups for newly diagnosed people, telecare, home safety, Carers, exercise, socialising etc.
A couple of decades ago the message about dementia was very gloomy, lots of awful stuff about dementia being like someone dying but still being alive etc. The ethos now is about living well with dementia and how a person can be helped to achieve this.
Hope you and your family find a way forward.

She sound similar to my mum who was diagnosed with alzheimer's 4 years ago. Mum is still in complete denial and things can be steady for a while and then there's a step down.

From what I have seen with DM and DMIL is that there isn't a steady progression. The person can be coping okay at a level then a crisis: a fall, bad virus, change in circumstances; can push the person much further into dementia.

It may be that the normal coping strategies stop working. We all use coping strategies, having specific places to put things, doing things on a set day, etc. Change this and we all are upset by this for a while.

When something breaks a coping strategy, the person with failing memory may struggle to create new coping strategies. Suddenly, more advanced dementia symptoms can become visible.

💐@Croneathome it isn't easy. We saw this with DMIL and are now in the eye of the storm with DM.

Is she on any medication for other health issues and if so is she managing to take that correctly each day? My dad began struggling with his which was the sign he needed daily help. First with just taking the meds and then it quickly expanded to doing his meals, personal care etc.

You don't need to have a full health POA set up to be able to talk to her doctor. She can simply sign a letter written by you authorizing the doctor to she medical details with her daughters and get it in her file. Or you could speak to the dr about your concerns and ask him to call her in for a well woman check at which he will give her a memory check. Either you or your sister could take her and be there if she will allow you to so you know what the dr says.

Getting a diagnosis of Alzheimer's can allow her to be put on medication to potentially slow the progression or 'keep her brain strong' as I used to say. Both my parents were diagnosed with dementia but, in each case, by the time they were actually given the diagnosis they had enough memory loss that they had forgotten about the diagnosis by that evening so it wasn't actually that traumatic for them to have it.

There is a graphic here showing the different stages and likely timelines at each stage. Her dementia is likely to be just mild at the moment but that's enough to get a diagnosis.

If you get symptoms later in life it tends to progress slower. My mum was diagnosed in her mid 80s and is now 92 and probably at 6b or 6c. She has no idea she was widowed about 18 months ago after almost 60 years of marriage but still recognizes me about 50% of the time.

It's a scary time for the patient as they know something is wrong and it must be very frightening to live alone while losing your faculties. That is what drives the suspicion, the sacking of carers etc.

forum.alzheimers.org.uk/threads/i-created-a-visualization-of-the-dementia-deterioriation-scale.142878/

Thanks everyone: looking at the Fischer clinical scale (I hadn’t heard of this before), it seems that she’s edging over the border from MCI into mild dementia (stage 4).

I shall discuss your advice with my sibling: seeing as I live abroad, my involvement is limited and I definitely don’t want to come across as making demands on my sibling, but we can talk about stages and possibilities.

The good news is that our mother should have a few years more of independent/sheltered living according to the Fischer scale, which is what we were unsure about. It seems crazy to me that the symptoms my mother presents are described as “mild”! But I guess it’s all relative.

💐💐 for everyone else dealing with this.

Make sure you are very nice to your sibling. Never criticise even if you think you should.

Speaking from experience.

Yes I agree with PP about sibling. Avoid criticism. Support as much as you can and do everything you can from a distance in between visits. . I say this as the sibling that doesn’t live nearby. Things are only going to get harder ( sorry) our Mum was at this point about two years ago Id say, and now there’s no way we can safely leave her on her own safely . Everyone’s different of course..

I'm sorry to sound like the voice of doom but what you have described is not mild cognitive impairment or even mild dementia. This is the type of behaviour my own mother showed when she was diagnosed by the memory clinic with moderate dementia.

Please bear in mind that what you and your sister see is the tip of the iceberg, you only really know ‘how bad’ it is if you live with someone (or stay with them for several days). Your mother will be concealing a lot of other things she can no longer do.

Every person with dementia progresses at different rates so it can be unpredictable. But I'm sorry to say I suspect the time is not far away when she may need considerably more help.

Yes sadly I agree. Don’t want to be a voice of doom either but every time I went to spend a few days ( which I did every six weeks or so) with my mum she was worse than I thought. Its often not too noticeable if you’re only spending a couple of hours or chatting on the phone. When you stay you might t they aren’t/ can’t make anything to eat, are forgetting to shower/ change clothes or are wearing three pairs of trousers or something. Sorry 😞

There are a lot of helpful videos on YouTube about this OP, where professionals discuss the different stages of dementia and give examples of behaviour and symptoms, but as pps have said, it tends to be different for every sufferer. Your mum sounds quite difficult -sacking carers - but if she agreed to be assessed and diagnosed, she would qualify for the state package of care where someone would heat an evening meal for her, put a wash on for her etc, to enable her to stay in her familiar surroundings for a bit longer. As long as she is not wandering and getting lost, or suffering with continence issues she sounds better staying where she is - someone who is still able to navigate their way outside and do their own shopping etc is not really at the residential care stage.

OP your mum sounds like she's at pretty much exactly the same stage as mine - I could have written that list of symptoms. The main differences are that my mum's nearly 10 years younger, and she's got my dad at home who's pretty much cognitively fine.

My mum went to a memory clinic about 18 months and was diagnosed with MCI. I was quite surprised at the time, as I was expecting a dementia diagnosis then. Since then, she's got considerably worse. She can no longer cook meaningfully, she sometimes confuses pretty major things, she's perpetually anxious and withdrawn, she can't remember how to play games or do puzzles, she's extremely repetitive, and she's gone from forgetting words sometimes to forgetting at least one or two words in every sentence, and often trailing off mid sentence because she can't pursue her train of thought.

I'm now quite certain that she's got dementia, but the GP doesn't show any sign of suggesting that she's reassessed by the memory clinic. I've tried repeatedly to suggest that she talk to the GP again, but I've met a brick wall. She doesn't want to go (because she's scared and horrified by her own decline), and dad doesn't see any point because there's no cure. I've tried to talk to him about anticipating future care and getting support, but I'm getting nowhere. It doesn't help that she's had various nebulous health problems that the NHS hasn't been able to 'fix', so she's inclined to think they're all a waste of space.

The best advice I was given on here was just to accept that she's got dementia, regardless of whether it's been diagnosed, and crack on accordingly. I'm sorry OP, it's shit.

I agree with @catofglory. As I said she sounds similar to my mum who is still living at home with 1 care visit a day that is basically just to check she is OK, a cleaner and us doing what we can from a distance. But this week we have had 2 difficult issues come up. One of them is a very public allegation which is totally out of the blue and out of character and is putting her in danger even if it isn't true and persists. Because we can't prove it social services can't consider a DoL, is still deemed to have capacity and refuses to consider a suitable home ( will only consider a residential home that doesn't cater for dementia, but she is ij denial) so at the moment we are stuck waiting for a call to say someone has confronted her.
We had a feeling we were building up to a crisis but expected a fall/illness etc.

Hi @countrygirl99 Im sorry your Mum is at the stage where she hasn't met the legal threshold for any care/ accommodation being enforced (it's a high bar, rightly) but you can see she is at risk. Would she wear a medic alert bracelet or a sunflower lanyard with her keys or something on so if she engages with member of the public in ways that put her at risk someone might notice she has a hidden disability?

@countrygirl99 my dad went into a residential home at first that covered both dementia and non dementia, in case my mum ( who is mentally fine) ended up in the same home.

Unfortunately it seems she is being a vandal so I doubt it would help. We know someone is doing this stuff and someone has publicly named mum but without proof.

The one mum wants to go to caters for people like the major in faulty towers. It's more a catered living facility than a care home. Not prepared to consider anywhere else and doesn't see why dementia is an issue as she doesn't think she has it despite being diagnosed via brain svan 4 years ago.

My stepmother has been deteriorating in much the same way for a few years now, and has been for loads of assessments, tests etc. At her last appointment she said 'have I got alzheimers' and the doctor looked a bit awkward and said 'yes'. My dad was there so I know this happened.

I had no idea they wouldn't just tell you this straight away, and that you may have to ask. I think the diagnosis is made by having brain scans.

@countrygirl99 I'm so sorry , that sounds so hard .

I suppose a dx of MCI or Alzheimer's and an assessment at a memory clinic is helpful in that medication and a scan to observe the brain might be the result.
It must be so scary for the person so I think drugs for depression and anxiety might help.
Provided they don't further cloud the sufferers brain.
But ... they won't help much with providing daily care which is the real problem.
And I've yet to understand what help having a H&W poa is .

Again, thanks to everyone.
Just for clarity, I would never impose on my sibling: my role is information seeking, anything that can be done online or over the phone, listening and commiserating.
There is zero interest from the GP, probably because there is no useful pathway here, so I’m not surprised/disappointed.
We will muddle through, but so far, our mother’s trajectory is exactly as predicted in the Fisher scale, so I’m hoping she has another 2 years of relatively independent living. It helps us calibrate our expectations, because in some ways I thought she needed residential care immediately, but in general she still manages quite well, even if she doesn’t remember major family events or what she said 5 minutes ago.