To think this dementia must be very advanced

[Pinkicingsugar]

We haven’t heard from the consultants for a while for my relative. Does anyone know what kind of stage dementia this will be?

Always wanting to leave the house and especially at night, very agitated and restless. We spent the day with her then she told someone 6 hours later that they hadn’t seen us for a very long time, so must have forgot she had been with us. She is saying she doesn’t have dementia and is swearing and shouting at us a lot. She is retelling us the same thing multiple times in a day, memories from her past and getting parts of memories mixed up

We feel as though we need more support but don’t know where to access it

It does sound like dementia / Alzheimer’s but it depends what you mean by advanced. I’d actually say it’s not that advanced if they are in the denial stage. Definitely get appointment with GP and go from there to see what support is available. Unfortunately it’s a very long and painful road - advanced stage is not being able to be left alone at all, not speaking, not being able to eat independently, forgetting everything everything. I’m so sorry for what lies ahead. My mum had dementia and we found some great local groups that offered support to my mum and to my dad who was her carer.

There are various ways to chart dementia.

This is one.

www.thegoodcaregroup.com/live-in-care/dementia-care/7-stages-of-dementia/

Some split into more, some into less.

Very advanced dementia is forgetting how to eat, forgetting toilet training etc.

So when you say you haven't heard from the consultant for a while, does that mean you don't have an official diagnosis yet @Pinkicingsugar ?

Different types/combinations of dementia advance at different rates.

I’ve found the elderly parents board really helpful.

It certainly sounds very difficult for her and those around her. You can request a care assessment from social services and explain what is happening. Some of the issues you mention like leaving the house at night are a clear risk to her safety.

You may not have heard from her consultant but the likelihood is that they don’t see her very often. If you are a close relative there is no reason you can’t pass on your concerns with factual examples to her GP/ consultant.

Does anyone have LPOA for her health? If so a discussion with her GP about actioning this would be a good idea.

Age UK are a good source of support.

The Alzheimer’s society is a good place to start - they cover all kinds of dementia if she has another diagnosis. I’m afraid local services may be pretty patchy.

In most places once you’re diagnosed you are discharged from the consultant, so they wont get in touch with you again.

If she doesnt have a diagnosis then her GP is where to start.

Thanks everyone. All very helpful

She has had a diagnosis of early onset dementia, front temporal lobe

We haven’t had any other appointments since this one yet with the diagnosis but it seems to have got worse so we wondered what stage we may be at.

We are just quite worried as she had been with us all day and as soon as we got home she rang us asking if she could see us and on the same day she had seen us she had told another relative that she hadn’t seen us for ages

At night time she is calling everybody in the family asking to see us and wanting to leave the house late so we are just worried

@Octavia64 thank you for that link. After reading about each stage it seems to be at stage 4-5 (moderate)

@olderbutwiser thank you, that makes sense

I think it’s just practical advice we need now then on the next steps and how to keep her safe

Its been a hard time as her husband has now gone into a nursing home and she has been returning home and asking where he is and we stayed for a while the other night and she was going into each room looking for him and shouting him. It’s very sad

It does sound awful, and must be very distressing to her and everyone else. But ‘advanced’ wise, it can be very hard to judge, it can get a LOT worse than what you’ve mentioned. It doesn’t help that they can be completely cognitive one second, and then completely gone the next. I’m keeping an eye out on my neighbour at the moment. Sharp as a tack 99% of the time. In her late 80’s but lives alone, house is spotless, goes shopping most days and at the bingo literally every single night. But then for eg I was at hers at the weekend and went up to use the loo, when I came down it was clear she didn’t have a clue I’d already been there, she thought I’d just come through the front door. She got up to put the kettle on when I already had a hot cuppa on her table. It’s a horrible and distressing disease. On the other end of the spectrum I’m a carer for a lady who has vivid hallucinations all day, always of one of her children being tortured. You have to be careful what you leave within her reach as she’ll instantly self harm with anything she’ll get her hands on. I’d 100% get her seen again if her condition has worsened

She lives on her own?
How do you oversee the night house-leaving?

Do you have P o A for health for the person? Does anyone?

Sorry for the barrage of questions.

It's very sad OP. My mum had mixed dementia (vascular and Alzheimer's) and she declined rapidly.

Same as your relative though, she'd forget we'd been there by the time we got down the stairs - I lost count of the times I'd be driving home and she'd phone me, crying because she was so lonely because she hadn't seen anyone for months ☹️.

One thing that helped a bit was we had this plastic paper type thing (like flipchart paper but plastic, that we wrote on with dry-wipe pens) that we'd stick to the wall. Damned if I can remember what it was called though, ironically.

We had 2 sheets of it. We wrote at the top of one "Visited today" and anyone who popped in could write on that, so when we went we could say "That was nice that Betty visited you today wasn't it mum?" She usually didn't remember but she sometimes did then. It gave us something to talk about anyway.

The other one was set up for "What's happening this week" and we wrote appointments on there, and visitors who we knew were coming on certain days.

You can get all sorts of alarms that will trigger if she goes to leave the house in the evening or at night. I believe you can set them up with your own voice, saying that it's not time to leave the house yet.

It sounds as though she does need some more support, in terms of practical reminders and possibly carer visits.

Other risks might be in terms of cooking safety - is she still cooking for herself? - it's quite common to leave hobs on, etc. And is she managing personal hygiene?

Agree she needs a social care assessment, the GP should be able to sign-post.

My mum also had early-onset dementia (though vascular plus Alzheimer's), though she was diagnosed quite late. In terms of timescale, she probably started showing symptoms (in hindsight) in early 50s, was diagnosed in early 60s (probably at a similar stage to your relative, perhaps a bit further advanced), then died at 71. By that point, it was obviously very advanced, which is where the brain just forgets normal bodily functions, ie she was incontinent, couldn't speak, couldn't eat (and was not interested in food anyway) and ultimately forgetting how to swallow and breathe.

There may be Admiral nurses who cover the area she lives in. They help and support families where someone has dementia.

https://www.dementiauk.org/information-and-support/specialist-diagnosis-and-support/what-is-an-admiral-nurse/

Thanks everyone

@Foolmeagain She wont prepare food and wouldn’t eat if we didn’t call in and cook for her or take her out for dinner but even then she is not very interested in eating at the moment

She is not looking after herself in terms of hygiene too so carers definitely will be the next step for when we can’t be there. we are worried she will refuse help from them though as someone in the family mentioned it before and she got very upset at the idea

DH's grandma was at the same stage as you are describing @Pinkicingsugar just before Christmas. She was also loosing continence, declining in basic self care and forgetting to eat and drink. Family were checking up on her multiple times a day as she refused carers and she was pretty much housebound due to other health factors. She was getting in a very muddled and vacant state over Xmas. She too was forgetting visits. She was getting where she was struggling to recognise family members. The TV was on all hours, she started losing sense of time and been up for half the night, sleeping half the day, up for over 24 hours then sleeping 16.

She has gone into a care home in January and the difference is night and day. Since going into the home, having regular drinks, meals, washing, help with dressing, company and generally things going on around her she is more present. She is still confused and muddled at times. She very much needs the prompting for dressing, washing, eating, drinking, visiting the loo ect. But she is much less vacant and generally more aware of life.

It did take some persuading and we visited with her. She went as a respite visit first and after the 2 were up she decided she would like to go into the home after all.

That is not advanced. That is mid-stage.

The confusion in the evening is very common and known as sundowning. Agitation and restlessness very common, so is shouting/swearing and being upset and disorientated.

To put it crudely, advanced dementia is being bedbound, incontinent and forgetting to eat. It does mean at this stage though that it is getting to the stage where care is needed and social care should be contacted about an assessment. Is this person living with you?

Dementia Carers Count have a lot of good info

"She has had a diagnosis of early onset dementia, front temporal lobe"

Do you mean early onset (ie she is unusually young) or early stages of dementia? @Pinkicingsugar

The two are rather different.

I’d say that was stage 4 out of the 7 stages.

@LindorDoubleChoc she is in her very late 50s so I think it is classed as early onset?

@Misthios thank you. She has stopped eating so we have to help with that but she will only have a few bites and her self care and hygiene has declined. She isn’t yet incontinent but is having to go to the toilet a lot more

OP I found this stage the most difficult, we tried carers twice but my parent wouldn’t let them in or got verbally and then physically abusive with them.

Have you contacted social services and told them everything you have said here. You need to lay it on the line that you need help for her and are out of your depth.

Have you tried offering more sweet foods, this was all my DM seemed to like at this stage?

My MIL was like this just before she went into care. She’d already been diagnosed with Alzheimer’s for 6 years at this point.

She lived a further 7 years, dying of organ failure in the end as all her skin broke down. She never stopped eating so didn’t follow the usual way of refusing food and fading. It’s was incredibly sad. She became bedbound, doubly incontinent, could not speak, didn’t know who we were at all.

It can be a very long illness, you should be prepared for this to go on many years if her body is healthy.