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Elderly parents

What does excellent dementia care look like?

60 replies

LaBelleSauvage123 · 28/07/2022 19:53

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?

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loveslife · 29/07/2022 21:05

It does sound like your relative may need specialist dementia care rather than a home that accepts people with dementia. I originally worked in a nursing/residential home and we used to have people who had dementia but in all honesty we didn't know what to do with them when things became challenging even after dementia training (which wasn't a great deal btw) I then worked in a specialist dementia care home and what I know now in comparison is huge! The training that I received in the dementia home was amazing and the care that the residents received was brilliant. It may be worth talking to the manager about whether they feel they can cope with your relatives needs now. I know that it isn't an easy task moving someone from one care home to another but the appropriate care that he would receive would help him so much.
I wish you lots of luck with it all.
Also there are many other things that should be tried when someone is undressing in communal areas, sending a grown man off to his room like a naughty child isn't one of them!

rwalker · 29/07/2022 21:04

saraclara · 29/07/2022 15:59

I worked for decades with children/teens with severe learning difficulties, a few of whom needed adaptive clothing to manage some of their behaviours.

In that case you will know choses braces you suggest would only add to his distress .
If He's distressed and trying to remove his clothes putting him in clothing very difficult to remove will inflame the situation .
And any restrictive particle would possibly need a DOLS order .

LaBelleSauvage123 · 29/07/2022 16:02

Thank you so much for all your responses - they are really helping.

OP posts:
LaBelleSauvage123 · 29/07/2022 16:01

That’s a really good point about risk assessments - I’ll ask when I go in tomorrow. He has a pressure mat in his bedroom. He’s got a GP assessment next week and my list of questions is getting longer!

OP posts:
saraclara · 29/07/2022 15:59

rwalker · 29/07/2022 15:24

I presume you have never worked in care

I worked for decades with children/teens with severe learning difficulties, a few of whom needed adaptive clothing to manage some of their behaviours.

Petronus · 29/07/2022 15:35

Silverswirl · 28/07/2022 23:05

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.

I’ve worked in a dementia home @Silverswirl and that is absolutely terrible. He should not be unfed or dehydrated. That’s a bare minimum standard of care. I think I would be looking for somewhere else.

rwalker · 29/07/2022 15:24

saraclara · 29/07/2022 11:53

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.

I presume you have never worked in care

gogohmm · 29/07/2022 12:20

It's tough. My grandad had a habit of removing his clothes, he was abusive to female staff (to the extent they had to only have male carers) and we had to get some sort of court order for medication because he became so violent and unmanageable. Years later we managed to access court documents from when he was young and it turns out he wasn't the gentle grandad I knew! Dementia reduces inhibitions so you unfortunately can see true underlying character. I've been through this disease twice, so cruel and hats off to the staff. Perhaps they could be clearer with families over the challenges but they are so busy

Hollyhocksarenotmessy · 29/07/2022 12:01

It's such a worry, isn't it.

My Dad was in a specialist dementia home, and what we thought made it excellent was:

  • High staff ratio so they didn't have to rush the residents. I saw one spend 20 minutes gently coaxing him to eat about 4 spoonfuls of yoghurt. When he first arrived it was taking 2 of them ages to wash, dress and get him up as he was terrified due to previous bad experiences, but they were so patient and let him set the pace.
  • completely open to visitors, you could just turn up at any time
-kitchen making really nice food from scratch, tailored to individual preferences. They even made my Mum 2 meals a day for a small fee as she was with him all day.
  • asked lots of questions about his hobbies and interests and tried really hard to do things he enjoyed. He really wasn't interested in 'activities' by then so they didn't keep pushing it, but made sure there were relevant things in his room for him to look at.
  • Big on dignity. Spoke to him respectfully. He was clean and smart, hair brushed and shaved every day. He went in looking a mess, it made my cry to see him looking himself again.
saraclara · 29/07/2022 11:55

In the very short term, maybe some dungarees?

saraclara · 29/07/2022 11:53

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.

BlanketsBanned · 29/07/2022 11:20

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

Selfesteem22 · 29/07/2022 11:18

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

BlanketsBanned · 29/07/2022 11:09

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.

LaBelleSauvage123 · 29/07/2022 10:57

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.

OP posts:
violetglow7 · 29/07/2022 05:51

Silverswirl · 28/07/2022 23:05

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.

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

Frequency · 29/07/2022 01:46

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.

Smartiepants79 · 29/07/2022 00:43

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.

spinachmonster · 29/07/2022 00:26

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 Flowers

saraclara · 29/07/2022 00:17

Bit her? 😮 But hey!

Time for bed!

saraclara · 29/07/2022 00:16

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!

Frequency · 29/07/2022 00:02

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.

Frequency · 28/07/2022 23:58

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.

LaBelleSauvage123 · 28/07/2022 23:53

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

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Frequency · 28/07/2022 23:40

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.

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