Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

Opinions are my own obviously but happy to try and help.

Thank you, that's an idea.

On your second diagram - what would be some signs of 'very mild cognitive decline' and then 'mild cognitive decline'..?

Typically things like forgetting names, maybe forgetting routes, slower processing of information, lack of interest in things because they're finding it harder to keel up.

Someone can have a diagnosis of mild cognitive impairment which may then develop in to dementia or may not.

Hi @ElmtreeMama this has all been very helpful thanks. I'm not sure if you saw my other post at 17.36 yesterday if you have any advice about whether this still seems like mci or more into dementia that would be appreciated. Also I have another question if I may...are you familiar with "sundowning" I've heard it's a bit of a phenomenon and we are experiencing it with our relative, very agitated in the evening, memory loss gets worse, gets very annoyed at the TV and the actors on the TV for some reason? Is there anything we can do to help this?

@Wobblymama01 sorry I didn't tag you in above response.
It's hard for me to say, she could be reassessed but you have to ask yourself what a change in diagnosis would change.

Yes, sundowning is a very real phenomenon. I'd recommend having it as a relaxed time, maybe try music instead of TV, no stress so not going out or having visitors at that time etc

After this weeks ( of many) listening to strange conversations - he told me this morning a man came in the night and massaged his bad knees and the liquid has gone through his body and come out of his ears hence the wet pillow ( it was saliva) and I just oh yes and ok but now it is really getting to me.

When people say to me - look after yourself - medical people et al - what do they mean, how ? My small family live away from me and my only sister has the same husband probs as me and where I live SS are less than useless.

Thank you for starting this thread OP and thank you for all the work you do.

Before COVID my Nanna had a fall before Christmas (2018). She hit her head but didn't go to get checked out despite being urged to and said she didn't want to make a fuss.

In the following months that followed she seemed fine - managed to get about as usual and I would be able to have a conversation with her no problem. By early 2021 though me and my husband have noticed she repeats things constantly and gets mixed up which we put down as normal at first - after all everybody gets forgetful but she began forgetting birthdays or getting days of the week mixed up. Things like that. She also lost her mobility as she needed to use a trolley to walk as she is constantly frightened of falling. She has said to us she feels as if she going to go backwards all the time. She can't leave the house without aid. She has two carers who help her domestically. She misses when using the toilet too in both instances. She has help to bathe too. She also stutters a lot and funds it hard to find the right words.

We aren't sure if she is showing signs of dementia or if it is just us looking into things too much but I know she is adamant that her health is fine - apart from her mobility and refuses to accept help which scares us both. Two months ago she was ringing us about the electrics playing up and we weren't able to contact her at all which led to us calling the care team. They went round to see if she was OK and it turned out she'd been sat with no electric on all day but didn't tell anyone. She was bewildered by all the fuss. She also keeps thinking her boiler is going to break or her bungalow will catch fire due to it.

We're not sure what to do in this instance. Her brother had vascular dementia but that's just one instance in our family. We've tried broaching the topic of her perhaps moving closer to us as she is secluded and I don't think this helps her anxiety re the boiler.

Do you have any advice at all?

@Carpediem15 I'm sorry 💐 could you contact dementia UK to see if there is an admiral nurse in your area, or the alzheimers society to see about peer support groups?
Things like eating and sleeping for yourself are important as well as knowing your own limits and when enough is enough.
It's a very difficult path you're on, I wish there was more help available.

@Phoenixwings1989 tbh it does sound like it could be more than age related decline, without them being willing to accept help though it is very difficult.
I think doing what you can, offering support, encouraging they seek assistance, seeing if they can move closer, offering to attend Dr appointments with them etc is all you can do.

My mother has just moved into an "outstanding" dementia care home. I visited her yesterday and was a little shocked to see how much time carers spent on their phones whist at work. The careers tended to the residents physical needs well but rarely tried to chat to them or respond when residents tried to interact with them, mostly because they were just sat texting or scrolling. Is this normal?

@ElmtreeMama would it be ok if I pmd you

@Wobblymama01 yes of course that's fine

@Neolara sadly I'd say yes! Though not on my watch, I'd raise it with the manager or even cqc directly, I used to have staff hand in their phones or keep them in lockers but I think its a sad sign of the times tbh

@Neolara I don't have anything like the OP's experience, or anything close to it, but that doesn't happen in the dementia home MIL has been in since February. I've never seen carers or nurses wandering round looking at their phones, and I visit at different times of day several times a week. The residents all have high needs and limited capacity to communicate verbally. I don't think there'd be much opportunity for checking out Twitter during the working day.

@Neolara I've not seen that happen where my DF is, the carers are always sitting with the patients, we turn up at random times (not deliberately) and they've been watching TV with DF or Reading the newspaper with him

How easy is it to fake Alzheimer’s/dementia?
if someone wanted to delay a court trial, and claim dementia, how easy would it be for the care home to believe him?

@Mylifehasimploded Hmm I suppose someone could fake it day to day but I'd think its a lot less easy to fake for getting an official diagnosis, the tests are set up in a way that would be difficult to fake I think.

@ElmtreeMama thanks. he is being evaluated by a court pysch, just worried he will not face court

@ElmtreeMama I need a bit of guidance if tou don't mind? I've been battling SS for weeks,/months re getting my DF moved ti a suitable care home. They have been less then helpful and have initially refused to pay for his one on one care needed for the first two weeks at a care home THEY asked us to view.

DF was sectioned under section 2 and then section 3 as he was refusing to take meds. He has been in a specialist MH unit since January.

The care manager told me that DF desperately needs to move to a care home as he was badly affected by a lot of the behaviour of other patients and it would benefit him to be somewhere calmer.

In the meantime SS have dithered, delayed and generally been obstructive. DF has vascular dementia and while all these delays have been going on he became very depressed and has deteriorated a lot.

SS now want to reassess him as they feel that the County Council cannot meet all of his needs due to his condition. What could this mean? I'm going to the assessment with other family members but I don't know what I'm dealing with now as far as SS goes.

Also is it possible DF would be deteriorating because of where he is? I know Vascular Dementia can progress quickly but DF seems to be going down hill super fast and I was told he was at the beginning of severe but that was weeks ago and he's worse now.

@Tara336 funding is not my area of expertise but I assume they mean he is to be assessed for CHC (continuing healthcare), it's basically the argument of who should fund dementia- social care or healthcare.
It may actually be a positive as it should mean he ends up in a more appropriate placement.

Yes definitely an inappropriate placement can escalate symptoms.

@ElmtreeMama thank you so much, I just need to fight for him as he just seems to be another case and nothing more. But being able to confidently say I know,they are harming him will help a lot.

@ElmtreeMama

I have two questions:

1. If you want to recruit specialist dementia carers or dementia nurses directly -ie. not using a company like HomeInstead or Helping Hands but so you are in a direct contractual relationship with a self-employed person - where would you recommend to advertise these roles?

2.Do you have any advice for how to handle a person with dementia when they are very resistant/aggressive/violent (likely to punch) to doing something that is important for their own safety? I'm thinking for example, like washing their hands if they have faecal matter on them before they rub their eyes or touch their face - or stopping them from doing something dangerous?

I'm familiar with the normal advice about distraction, waiting, trying something else first - but I'm thinking about a situation where the action or the prevention needs to be done immediately. Any tips or is it just a case of you have to do it and roll with the punches literally?

Thank you.

@ItsAllSoBleak you could try nursing agencies, otherwise just the usual places ... even things like fb groups. I know a nurse who got her job from it being advertised on next door app, she set herself up as self employed.

Yes it does sometimes have to be just doing the best you can and rolling with the punches, making things as easy as possible so using wet wipes if you're not near a sink for example. And weighing up risk, it might actually be less risky to have them put their hands on their face than it is for you to get punched.
I'm sorry I don't have better answers.

Teepa Snow has some great videos on the subject on YouTube which might be worth a look.

thank you for your reply @ElmtreeMama
are there any nursing agencies you'd recommend? it's hard to find any information about this strangly.

Good Evening
My Mum has vascular dementia. She was diagnosed late last year. She had a serious strokes that have exacerbated her condition,

In January you could ask her a question and you would get a template answer but now she doesn’t make sense. She has lost over a stone in weight is double incontinent and has lost the use of her legs.

it really is pitiful to watch and very sad. I appreciate you do not have a magic wand but could you let me know roughly how long you think she could live for, given her symptoms.
thank you x

Hi, thanks for this thread, it has been very interesting and helpful.
MIL has dementia though I don't know what kind. It is pretty advanced (little speech left, incontinent, struggles to stand from sitting, limited mobility, frequent falls, forgetting to chew and swallow when eating but just stuffing more and more food into her mouth and then choking on it, recently started wandering off at night to be found by police...). I think she still recognises family most of the time, or at least she doesn't get distressed when we visit, though names are completely gone.
She lives at home with FIL, several times a week carers come in and help her get washed etc and interact with her.

Her whole life she was very strict about her diet, and accordingly always thin. Same with her children. Being thin was always very important to her and within the family, being big was seen as a moral failure. At the same time she has always had a sweet tooth, but I believe she found a sort of sense of moral superiority in not giving in to temptation.
SIL, her daughter, is similar, and will strictly police her own children's food intake as well as her own.

The last few times when I happened to visit at the same time as SIL, I observed that SIL now polices MIL's food. SIL will say e.g. 'you have had enough' and take food away from MIL's plate or refuse her a second helping. She has said 'you will get fat if you eat this, you won't fit your trousers anymore and we'll have to buy new ones, you don't want that now do you?'
Now I'm not sure how to feel about this. MIL has very little left that she enjoys and makes her happy, but she obviously no longer restricts her own diet and really enjoys a nice pudding, will happily have a second helping, and perhaps even some chocolates afterwards. I partly feel it is wrong to deprive her of this. At the same time if she had been asked a few years ago, she would have been horrified at the prospect of gaining weight and would have said 'please if it comes to it, never let me get fat!' so from that perspective, I feel that her lifelong values should be respected (even if I don't agree with them). Yet whereas she used to derive pleasure of sorts from being thin, she no longer does, but she does feel pleasure when eating pudding!
What would you say to this, is it right to refuse her treats that she enjoys, for the sake of her 'wellbeing' i.e. maintaining a very low weight?

How long does the 'late stage 7' dementia last?