What does excellent dementia care look like?

[LaBelleSauvage123]

The nursing home my dad is in is described as providing ‘dementia care’. Today I found him lying on his bed with no trousers on in distress. He said ‘LaBelle I’m really scared’
( this is a highly reserved man who very rarely talks about his feelings). He thought that he was being forced to entertain the other residents in some kind of show. I pretended to go out and talk to the staff about it, then came back and said I’d told them he wasn’t to take part, which seemed to calm him down. Later I spoke to the member of staff on duty and asked why he was in his room. She said that he kept trying to remove his trousers in the lounge, and had been ‘very rude’ when asked not too, so they had told him he had a choice: clothed in the lounge, or trousers off in his room. I asked what he had said and she said he had been ‘threatening’ towards another member of staff, telling her ‘it was a good job she wasn’t a man’. My dad is the most peaceable man and has never been in a fight ( or even many arguments) in his life. Surely staff should recognise that this is the dementia talking and not him - and not use words like ‘rude’? They are aware that he’s very confused as he’s not making sense most of the time.
Does anyone here have a relative with dementia in a home which they feel provides excellent, sensitive and understanding care? Is it too much to hope for that places exist that actually help with the effects of dementia, rather than just providing physical care?

I didn't mean to offend by the hackles up remark - I just meant both families and carers can be guilty of it during a conversation and it hampers communication. Please try and not focus too much on the words used. Theres not often any other way to explain someones behaviour being rude and threatening. What is important is the way it is said - "your father is rude and threatening" is completely unacceptable whereas "you father was exhibiting some threatening behaviour and using rude language which isn't like him...etc" has a totally different tone. Again it doesn't say a thing about him or his character as a person.....its all just a manifestation of his disease, which they will know.

With him being alone in his room - there could a number of reasons why. Sometimes residents request to be left alone. Sometimes our presence is aggrevating them further, so we will give them space and check regularly on them quietly (more often than not this is the case). Your father may have been unsettled as he was feeling tired and lay down on his bed himself. The main goal is to help pass ths period of distress and being alone can sometimes help that. In my home everything is assessed minute by minute and quite a few of our residents respond best to having some time alone as any conversation or noise or agitation deepens their distress. Others respond better to a hug and a hand hold and a chat about the olden days. Maybe thats what suited your father best that day. You say he was still distressed when you arrived - unfortunately with dementia sometimes the only thing that works is the passing of time. Maybe have a chat with the nurses and ask what his mood is like overall - whether he has more good days than bad etc. The staff see him 24/7 and will have a better overall idea of how he is than you visiting at a bad time. It could have been a total coinicidence and he could have had a great few days before that. Its hard for you to assess with only a snapsnot.

Not sure what you've found offensive about Frequency's message?? Have you picked her up wrong maybe?

i totally understand what you mean.
I have a close relative with advanced dementia. Paying over £1000 a week for them to be there.
Relative defecated in their room at night- there was no ensuite in the room and he wouldn’t remember to go out to find the loo. Care staff were almost annoyed saying they wrote a sign to the loo. He can’t read anymore let alone work that out!
Relative can’t cut food. Won’t eat unless heavily prompted and really almost needs feeding. Staff haven’t been cutting food or ensuring it’s eaten. Got to dehydrated he had to go to hospital and has lost so much weight.
We get the same annoyed tones when speaking to some staff- like he is being deliberately rude or annoying etc. I just don’t get it honestly.

VioletGlow - I visit him every day so it’s a bit more than a snapshot. He’s been getting steadily more confused since he moved there and has a GP appointment next week to see if they can find any medical reasons for this. He was showing signs of possible early dementia before he went into hospital ( he had a fall, broke his neck and was on a ventilator) but this is totally different - he’s seeing things that aren’t there, having delusions and there’s a paranoia creeping in too. I’d never seen this particular staff member before and she may have been agency staff - though he hasn’t been there long so I don’t know everyone. I have to say that the staff who are there regularly are much more sensitive. But I still wonder ( and this was the point of my post, not to moan about one member of staff) what really good dementia care looks like, and where we can find it.

Silverswhirl that sounds awful - your poor relative. And thanks for understanding - it ‘annoyed tone’ is right.

No ‘it’

There is a specialist care home near me that ensures that all staff wear Pyjamas when on night shifts so that patients waking at night realise that it is night time. This makes a huge difference to night time care apparently.
If you are in England look at the CQC rating for each establishment. I wouldn’t want to be anywhere that wasn’t rated as Very Good.
look at how clean and tidy the patients look as this will be a good indicator of actual staff ratios.

Have you had him checked for a UTI?

Dementia can come on very suddenly, sadly, but a UTI has many of the same symptoms, so it's worth checking. If it is dementia the GP will be able to prescribe medication to slow the progression (it doesn't always work) and something to take to help the anxiety dementia can cause.

The way staff talk to relatives is very different to the way they speak to a resident i.e the way they told you your dad was being "rude and threatening". They won't have sid that to him. They would understand there is no point as it wouldn't make sense to him. The training we are given advises us to distract and try to bring them back to today by asking about things earlier in the day or talking about something they were looking forward to later i.e "Come on, let's your get trousers back on. We can't have you walking about in your pants. Did you go to the morning room this morning?/I heard you had a bacon sarnie for breakfast this morning, I'm jealous/Oh, look it's 3pm didn't you LaBelle was visiting soon?" etc.

If residents do threaten staff we might say "That's not nice" or "You can't speak to people like that" etc but we would then dive right into another conversation to attempt to distract from the behaviour rather than wallow on the bad, iyswim? My go to was always "Let's go for a cuppa and a biccy and you can finish telling me about X," while gently leading them away from whatever triggered the behaviour. But as violet pointed out, this doesn't always work. Sometimes the best thing we can do is give the resident space.

Yes - that’s the kind of thing I mean.

Residents always look clean and tidy - I think the physical care is really good.

Yes he’s been checked for a UTI and it was clear.

Excellent dementia care is as hausmaus described - enagaging with the residents and involving them in hands on activies and sensory stimulation, however these places are few and far between and eyewateringly expensive. It wouldn't be covered by government funding.

All nursing homes should be doing something with residents on a daily basis even if it is just a game of bingo or a sing along. Most places aren't adverse to volunteers coming along to organise or assist with activities.

Maybe getting involved with something like that might help put your mind at ease? You will need to pay for a DBS certificate but they aren't expensive.

Frequency - how do I find them though? He is self -funding - it’s not limitless but enough for now.

Asking local carers is your best bet, failing that call places and ask what activities they offer on a day to day basis. Ask if you need an appointment to visit. If you don't make sure you turn up unannounced that way you know that what you are seeing is genuinely what is on offer.

The place I worked at was independent living (council run) but the person responsible for filling empty places would lie through her teeth to get the spaces filled. We should never have had dementia patients in there but as there was no-where else to put them due to national staff shortages and poor government funding the council pushed residents onto us who needed more care than we were safely able to give. The entire care system needs a complete overhaul and a massive funding boost.

And ask the carers who work there. 99% of carers I worked with were always gently honest with relatives who asked if their loved one was in the right place and recieving the funding and care they were entitled to based on their needs. We often had to fight tooth and nail to get residents the right care and funding and it always helped when the family was on our side. All too often families are blind to reality of their loved one's condition and congnitive and physical decline and would fight against us when we tried to push for a higher level of care.

My MIL was in a specialist dementia home for some years. It was council run and absolutely excellent. The warmth of the staff to the residents was wonderful. I never saw anything other than kindness, patience, empathy and tolerance from any of them, and MIL could not have been better cared for and understood.

I've laughed and said to my kids that at the first sign of dementia, I want them to get me a place there! Unfortunately it's in Yorkshire and I'm in the south east, bit her, there has to be a way!

Bit her? 😮 But hey!

Time for bed!

There's a really good dementia care home in Chepstow - kind of South West...
Really hope your Dad was calmer by the time you had to go

My gentle, wonderful grandfather used to regularly believe he was being forced to be part of some kind of show. Would be obstreperous and rude to care staff. Would refuse to do simple things for his own benefit. Simply became a different person.
My calm patient and loving grandmother accuses people of stealing basic things like cups of squash. Believes no one has been to see her for weeks when I was there yesterday and my mum the day before. Has become a different person.
Who they used to be no longer exists.
She is in a good care home. The best available.
She moved in 3 months ago. According to her she’s been there for years!
She is an utterly unreliable witness.
we have to trust that her carers etc are doing what we expect. Someone sees her nearly every day, it’s the best we can do.
In group care we have to accept that other peoples needs and wants are as important.
Watching this all is deeply distressing. Long life is not always a good life.

Believes no one has been to see her for weeks when I was there yesterday and my mum the day before

If it is any comfort this is the most common complaint. Care staff always remind them when you were last there and reassure them that you will visit soon.

The most outlandish one I had was when a resident asked me when we would land. Apparently, he was on a plane to Egypt and I was going was with him. We were going via a small local village. He wasn't at all distressed. He was quite looking forward to his holiday, so I played along and asked him what we were gonna do when we got there. We also had a former bus driver who was constantly driving all the staff to Germany on his bus.

Those kinds of delusions we pander to, although it's not reality it makes the residents happy. They're generally reliving a happy memory and we get to be a part of it. We only interupt the distressing or potentially harmful delusions.

Thats completely unacceptable. Complain to them immediately about that - thats not good care at all 😪

That’s so interesting about the similarity in delusions. My dad often tells me he’s off on a journey somewhere. Another favourite is fire, flood or some other kind of disaster at the home. We haven’t had the ‘no one is visiting’ or stealing (yet) but he doesn’t remember who’s visited from one day to the next.
Literally as I was typing this I had a call from the home to say he fell last night - was ‘found by his chair in the lounge on the floor’. No injuries thank goodness. It’s a constant worry.

There are specialist homes, all,carehomes will admit residents with dementia but often the staff have not received training, even the registered nurses where I worked had no specialist dementia training or knowledge which I thought should be essential.
You need to ask the manager what risk assessments your dad has for safety, mobility, falls. He has walked from his room to the lounge and fallen and no one noticed, he should have falls sensors, the communal doors could be alarmed, his careplan needs to reflect his risks and they should do an incident report. I would also ask when he last saw a gp, his suddent confusion could be many things and there is medication that can help with calming people down a bit without sedating them.

OP I would say look around for another home I don't think forcing someone to stay.in their room is good practice. My dad is in a lovely care home with a specialist dementia unit- I think visiting a few others and also asking about locally would give you a feeling. He does have his moments for sure - both taking trousers off and shouting but it's dealt with

Are you in SW England or SW London, the Admiral Nurse helpline or dementia UK might know of good homes in your area

If someone is trying to remove their clothes, there are ways to prevent that without shutting them in their room.

In the short term, OP, Google for braces that are hard to remove. You might find specialist clothing on disability sites.