Dementia- experience/tips on managing delusions?

[bigmugs]

Mum has recently been diagnosed with mixed dementia (alzheimer's and vascular dementia) and one of the most difficult symptoms is frightening delusions. They never start when she has someone with her (I suspect they are triggered when she feels alone and worried) but once they start she cannot be persuaded that they are not real. She reports seeing and hearing people but I don't know whether there is actually a moment when she 'see's' them or as part of the delusion she thinks she remembers this if that makes sense. Obviously to her they feel completely real and terrifying. If someone goes to her, she will not be persuaded on that day that the delusion is not real but will calm down on the basis that the person with her can deal with the frightening thing and/or the people she imagines want to harm her will not do it when someone is there. The delusion will become more elaborate and frightening the longer she is left alone and then it will take longer to calm her when someone can get to her. Typically once one of these delusions starts she will only be calmed for more than a few minutes if someone stays with her for a couple of days.

I wondered if anyone has experience of ways to deal with this sort of delusion, to calm her more quickly and make her less frightened? Or can signpost me to useful resources to read etc.
We are awaiting results of some more tests and then hopefully some medication for alzheimer's but my understanding is that the medication is aimed at slowing the progress not really stopping current symptoms.
I know that the obvious answer is for her not to be left alone so that delusions don't start but she (backed by brother) will not consider any sort of residential care/assisted living and it is simply not feasible for a family member to be with her 24 hours a day. Visiting carers wouldn't help as she would still often need to be alone for most of the working day and she would not be able to afford a full time live-in carer (if she moved to residential care it would need to be funded by the sale of her home).
When she has delusions that are not frightening my usual response is just to go along with it but clearly this wouldn't be appropriate for terrifying delusions. However, attempting to persuade her that these things are not real also frustrates her and she imagines even more scenarios that 'prove' it is real.

I’m sorry I can’t help….but I really feel for you being in his position. I hope someone can help xx

It really sounds like she needs to be in care regardless of what your mother says she wants or doesn't want at this point. Is it you or your brother (or both of you) who have PoA? If it's your brother only, what is his reasoning for not agreeing to it? Perhaps you need to put it to him (as you've set out here) that she requires 24 care, so either he agrees to a care home or he moves in with her and provides it himself. So sorry for your situation.

I’m sorry but she will need care. My mother has vascular dementia and my brother cares for her full time with the help of daily carer visits for her personal care but we couldn’t leave her alone it wouldn’t be safe.

Thanks for your replies. I absolutely agree that really she needs proper care but she does not want that and is a long way being assessed as not having mental competency (when she is not mid-delusion). Brother is also absolutely adamant that she must never go in to residential care. She is not currently in physical danger when she has these delusions- just very scared. Brother has her over night (he lives nearby) or stays with her over night so these issues arise during the day when he is at work or at weekends/holidays if we both have other commitments. I have tried to encourage them to consider all options but when mum is mid-delusion clearly she can't think properly and afterwards she and brother down-play what is happening and we get a variation of 'It will be OK, we don't need any of that'. They seem to think we should be able to arrange a rota of friends and family to be with her when we can't but understandably other people are happy to drop in for an hour or so but don't want to be tied to having to stay all day, repeatedly and can have to cancel due to changes in their own health/work/family commitments.
I am trying to encourage mum to go to a paid day-care centre occasionally (starting with a half day etc) just so that there is less time that she has to be alone but I am getting push back on that as well. Mum is reluctant because it's unfamiliar and brother tells her she doesn't need it because she has him.

I think perhaps as well as asking if anyone can advise on how to manage delusions when they are happening, I should be asking if anyone has advice on persuading reluctant elderly people and their families to consider paid care.

I’m so sorry for you.

My mum is in late stages of mixed dementia. She is still at home but only because she was relatively young when diagnosed and my dad had just retired and was fit and healthy enough to care for her.

She is now bed bound and has carers coming in 4 times a day to do her personal care.

Even in the early days she couldn’t be left alone. I don’t think it would be possible with family having to go out to work.

Your brother needs to consider that this could be the situation for a very long time. My mum was diagnosed at 63 and is now 76…

In terms of persuading people to accept care then it’s a case of “needs not wants” taking priority and potentially being prepared to either let a crisis unfold and/or be the bad guy.

DMs delusions got to the stage she was attacking DF and trying to run away (onto the main road their house was on). Same as your DM she would nod along with DF when she wasn’t delusional that everything was fine when SS or the doc visited. In my case this was exacerbated by DF also having at that stage undiagnosed dementia so he was forgetting the bad moments and only remembering 50 years of happy times with DM.

It took a crisis where DM attacked DF and he called the police for SS to take it seriously and also at that point I acted unilaterally and booked mum in for four weeks respite which I made permanent half way through. DF to this day does not understand why and am sure he hates me for it. But DM is now cared for properly and safe and that was all that mattered.

Can you identify any triggers to the delusions ?
Mirrors ,reflecting surfaces?
Any mileage in
" I can see why you think that / understand why you're saying this.."
You sound so thoughtful and understanding.
I hope your brother can see sense.

@BlackRoseBlue Mum's delusions don't currently result in any danger to her or anyone else. She just gets very, very scared (she reminds me of a very small child who has had a nightmare). If no one answered the phone or went to her, I do wonder if she would eventually go out looking for help which would be dangerous since she lives near a main road and has poor vision at the best of times. But we don't let it get to that stage. I suspect it may take a dangerous crisis for mum or brother to reconsider, but would really love to avoid that.

@limetrees32 The only real trigger is being alone. It's particularly bad at night when I suspect she is just more worried. At first I did wonder if she was hearing people outside the house, or the TV etc but she lives in a quiet place with nowhere nearby that would lead to people walking past at night. It really does seem to be all in her head, which is why I wonder whether she might not actually be 'seeing' or 'hearing' things but perhaps having a sort of false memory of having seen or heard someone. A sort of confabulation, where she knows she is scared and her brain invents reasons for the fear. When she is in a delusion if I try to convince her that I understand she's scared but there is no one there she will try to convince me that it is feasible by telling me about past similar events/stories about something similar happening to a friend/on the news etc that I know she really believes are true but definitely are not. I've been trying to explain to her that there is damage in her brain making it tell her things that aren't true (getting a diagnosis seemed to calm her quite a lot- I think because she understands that it is a medical condition and not a conspiracy). This works to some extent after the event but not when she is scared.

I’m sorry for you all that you are experiencing this. I’m afraid the only answer is proper care- she is not safe living alone and the only outcome of this carrying on is that things will get worse. It sounds as if your brother is in denial about the disease.

would they be open to discussing a period of respite care? It might then become clear to everyone that she is safer and happier with care in place.

I know you may think this is silly and possibly childish but l bought my Mum 2 lovely rag dolls and she loves them . I also buy her very soft fabrics for her clothes and bedding and highly scented room sprays and perfumes and l even use Vicks from a pot to rub on her chest . I give her spoons of honey and tempt her taste buds with different textures and flavours .
I have a routine with her and when she is frightened l hold her hands and squeeze them tight and rub them and then l manicure her nails and wash her face and hands , stroke her forehead and make her comfortable and she settles down then . When she has horrible delusions l listen to her, never contradict her and l tell her l have sorted it out and l say you know you can trust me to sort things out .I am always consistent with her . I am very forthright and convincing and she does calm down then . I did get help in though and visited for hours every day and slept overnight until she fell ill and went into hospital, she never came home after that , they deteriorate so much in hospital. Hospital Delirium they call it . She is now in a care home and her house will be sold on her passing and the fees paid with the proceeds . Good luck to you @Bigmugsl hope you find a way to cope bless you and your darling Mum .

I'm so sorry for your situation, but I don't think that your brother (and possibly you) are being honest about your DM's disease and how it's likely to progress and impact your lives and hers. What is the reason given by your brother that she "must never" go into residential care? What if she actually starts putting herself in danger? Than what's his solution? You say he's staying there overnight, but is also adamant that she shouldn't go to any sort of day care. What is his reasoning for that? Do you have PoA jointly with him? I think your task right now is not trying to reason with your DM to explain to her what's going on in her head, but to get your brother to understand the how this disease progresses and how much help your DM is likely to require quite possibly in the very near future. Wishing you well in that.

I want to agree with the posters who say that residential care has to be the way forward. In my family we have been through similar very recently, the delusions were not scary for our Mum, but they were making her quite distressed. We were trying to avoid residential care, but Mum lived alone (no family member in the same city and I am not even in the same country). She was not safe. The safety issues were around her declining physical condition and her ability to make decisions about daily tasks.

To cope with the delusions we would sometimes tell her they were dreams. Other times the content of what she was saying meant that we could listen and agree with her. Recently she has fixated on contacting someone who she knew 70 years ago and this has become distressing rather than scary. We try to keep talking about what is happening in the present or watching TV together.

Mum recently needed rehab after a number of falls. I had assumed that NHS staff would be the ones to say that she could not go home. Unfortunately for us they seem to want to follow the patient's preference. Mum does want to go home. I did not believe that if she went home with 4 visits a day she would be safe. We could not use the medical staff as 'Bad cop' for telling her that she could not cope alone. When I would beg her to stay in her chair and wait for the carers to come and get her to the bathroom Mum would say that she was fine, I shouldn't worry. Hmm that doesn't really work does it!!

In fact although in one breath Mum was saying she wanted to go home, when I told her that I did not want her to go home she agreed with me. She said her room was nice and clean, the people took care of her and the food was good. I think her wanting to go home is about familiarity but also in her head she thinks life at home is going to be like it was 5 years ago.

Since NHS staff/social workers seemed to fail to make an assessment based on safety I still had to persuade the other family members that shared care to agree. OP I basically had to say that I wanted to be supportive but I had to opt out of making so frequent visits when there were crises. I did have clear family responsibilities at my home so it came across as being realistic rather than unkind. In your case I would suggest that you have to say to your brother that if he wants to organise a rota you could do a specific number of sessions per month. Make it clear that the rota is up to him though. You have x y z responsibilities that mean that if he wants Mum at home, he needs to do the lion's share. I think spending far too long reading Mumsnet posts has been helpful to me. I started to use the B word - boundaries. It is setting boundaries about what you are willing to do.

To start me off on the road to considering a setting about 3 months ago I did a Google search of care homes in the area. I visited two and was ready to do virtual visits of several more options. I checked out the eye watering prices and make a spreadsheet of what I thought were my priorities/questions to ask. I think this sort of made me feel that I knew what we were looking for.

We have been fortunate in that Mum had a place in a care home for her post-fall rehab. She is just going to stay there. The location is not ideal, but we have taken the decision that taking her to a completely different home would be stressful. I can cope with paying for an Uber or a bus journey of over an hour when I visit 5 or 6 times a year.

I wonder if in your case OP you could do a period of respite as a try out. This was called a 'tactical respite' in one of the homes I visited. Brother would have to agree though. Maybe if he wanted to go on holiday he could suggest that she goes to a setting for a month (they do need time to get used to the setting). The month could stretch until your Mum agrees that the family is better off.

I can hardly recognise myself being so cold hearted, but I told myself that we had devoted two years of trying to follow Mum's wishes. It was no longer an option. I reminded myself that when she was the same age as me she was going on trips, having hobbies and enjoying herself. I can't believe that this is what she would have wanted for me at this point in my life. I have spent a lot of times on planes is the last 12 months. Unfortunately none of those plane journeys have been to anywhere that warrants a postcard home.

I am surprised how I am not feeling guilty with this decision A huge weight has been lifted.

While I’m not in favour of over medicating, and definitely not just to make patients with dementia easier to handle, my aunt ended up being prescribed anti psychotics (I think at a fairly low dosage) when she had delusions. She also had mixed dementia and was scared much of the time. The antipsychotics did seem to help, and she was definitely a lot less scared. It was horrible to see her terrified, and it was difficult to reassure her, so the drugs were of benefit to her overall wellbeing.

I agree with @tesseractor that a medical review would be helpful, asking the GP about the Older Adult Mental Health Team in your area. They were absolutely brilliant with my mum, it was the first glimmer I had that things could be better (my mum was actually in a home when they saw her but the placement was breaking down and it was hideous. Ultimately she went to a specialist home where things improved hugely).

TBH the GP will have seen this often and may well be able to sort things themselves but the OAMHT includes therapists etc and can give a broader view.

@bigmugs sorry to hear you are going through this. It sounds very similar to my mother in law. She has the same diagnosis and started to experience delusions and paranoia too. She was scared about conspiracy theories, people knocking on the door that weren't there. Telling her sons she needed to confess to secrets but then couldn't remember them. She was anxiously ringing people every few minutes. Luckily we had support from the Young People with dementia team as she was diagnosed when she was 60 and the Dr there prescribed a low dose of olanzapine which is a anti psychotic. It really helped and kept that side of her dementia at bay for a number of years. She was on it until she went into a home when other elements of her dementia significantly progressed. I would recommend exploring something similar regardless of care etc.

@Eggbert12345 That's interesting. We have an appointment to discuss medication soon so I will ask about anti-psychotics
@SylvanMoon Brother's stance is that mum must never go in to a care home 'no matter what'. He is the sort of person who makes decisions based on gut feeling but will then double down and look for arguments to support that decision. He had a girlfriend who worked in a care home so he claims he 'knows what those places are like' and that all residential care facilities are just about getting money out of old people. I had persuaded Mum to look at some day care options (I sold it to her as a bit like joining a club when she was younger, to get to know some new people and have some company whilst we are busy) but brother's view is that this is an unnecessary expense as she has her family around her. Sadly she sees him as the one who really cares about her and will go along with what he says. I really don't think brother is prepared for the inevitable decline- I wasn't expecting things to change as quickly as they have.
@Ilovemyfam Glad to hear you found a way through this. I have tried to get a sensible discussion about our various commitments/future care needs etc but I'm afraid that really neither of us really have time to do even as much as we are currently doing long term. Since brother has already decided that we must care for her any discussion just turns in to an argument that I should be doing more and no willingness to even consider other options. I think that if it was just mum and me she could be persuaded to try respite care, and would then probably see that it was not so bad. Again, it's something brother sees as unnecessary and he says he will take her with him when they go on family holidays (they have done this before and never leave the UK).

I'm really grateful to everyone who has replied- if nothing else it has reassured me that I am not unreasonable and uncaring in suggesting residential care. Unfortunately I think I am going to have to set boundaries and be the 'bad guy' before anything will change. I can see that there will come a time where if nothing else brother wants a holiday and mum will not be capable of going so they may need to agree to respite care if I won't step in. I know that they'll put pressure on me and extended family members to look after her first though. We have had various social care and medical assessments but none of them really get beyond brother saying he will take care of her even if I won't, and there doesn't seem to be any sensible questioning of how realistic that is. So like another posted mentioned it doesn't seem likely that we'd be able to 'blame' HCP for pushing her to try other care options.

Awful situation.
Could it possibly help to set up a screen in one room with video recordings of family or friends chatting about this or that, so that your mum can see familiar faces and hear familiar voices? It's a long shot but maybe worth trying as a way to keep her connected to her loved ones when they are not physically there.

From experience, trying to tell the person - however gently - that it’s all in their imagination, simply doesn’t work.

It took me a while to work this out though! If possible, I would go along with it, if nothing scary or harmful - like DM insisting that she’d visited any country mentioned on TV, from Albania to Zimbabwe. I’d just say ‘Oh, really? Was it nice?’ She’d invariably say ‘I can’t remember.’ 😂

However, when it came to insisting e.g. that a family member or neighbour had stolen something (in one case it was her mother’s house that her sister had ‘stolen’ - it went on for weeks!) - I eventually realised that a signed and sealed certificate from the Lord Chancellor wouldn’t convince her, so started saying e.g., ‘Dear me, that’s terrible - I had no idea! I’ll get on to the police/a solicitor, first thing tomorrow.’

By then her short term memory was practically zero, so I could repeat the same ad lib. It always kept her (reasonably) happy for the moment.