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?

My parents both have advanced dementia and have been in a nursing home for 4 years. I've been very impressed with the care and have seen staff handling tricky situations many times. I think it requires great leadership, great recruitment and support, enough resources to get through the difficult times.

it's very hard to see this stuff - we remember how they were in their earlier lives

The staff will have understood it was his dementia, however, they still have a duty of care towards other residents and their own staff. If his behaviour was upsetting other residents and he wasn't able to comply with gentle persuasion asking him to go back to his room is the only option they had.

Ideally, there would be enough staff for someone to check on/sit with/chat with your Dad until he calms down. Unfortunately the care industury is woefully understaffed and underfunded.

I've just left care because I got sick of my holidays being denied, being rota'd in on my days off and constantly working shifts were we one or two staff members short.

I'm not blaming the staff really, I know they're run off their feet. I would just like to know if specialist dementia care exists with staff who are trained to reassure and use language that doesn't smack of 'he's being bad'.

I was in hospital yesterday and the lady in the next bed to me obviously had advanced dementia. A carer from her home was with her. He was so brilliant. He was this 20 something 'beefcake' guy who looked like he lived at the gym... but his manner was just so wonderful. He interacted and talked to the lady a lot. He went along with her conversations, gently reminded her of things they had done together the day before. Was discreet on her behalf when she said things which could be considered 'rude'.

My partner and I commented on it and as we left my partner said to him how lovely it was to hear him and how great he was with her.I think it's down to vocation
As someone with a mum with dementia who is currently at home - if the time comes I hope she will be as lucky!

First of all I'd like to say I completely understand and empathise how hard and emotional it is having a loved one with dementia. I've been there and its sad, tiring and cruel on everyone.

Secondly, I work in a dementia specialised care home and care for many different people with different types and levels of dementia. Unfortunately it is a cruel disease and can complete change a person. Families often tell us their loved ones were the stark opposite of how they now act, with quiet and gentle folk in life becoming loud and aggressive etc (it is certainly the case in my grandmothers instance). The staff at your fathers care home will understand this inside out. To be honest - even the most violent and aggressive of language and behaviour NEVER gives staff a negative view of any resident. We understand it is their illness talking and behaving. We also spend a lot of time with them day to day and we see the little breakthrough moments where their true personality shines through. We love these moments and on a good day there will be many. We understand how hard it is for families to visit and see the effects of their dementia (we even try to downplay these as much as possible to save families and residents being embarrassed or feeling hurt).

I'd like to comment on the situation that happened to you recently. The reality is, and it sounds harsh to say, but whilst your father is your only priority and focus, the staff at his home have many residents to care for. If his behaviour was unsettling, annoying or threatening other residents the staff would have tried to minimise the disruption - usually by distraction. Distracting is often the quickest and easiest way to take a person with dementia out of the thoughts/actions that are upsetting them at that moment. It sounds to me like it did not work, and in that case staff had no option but to take your father to his room until his behaviour passed (and it always does...eventually!). If he chose to lie on his bed undressed in the privacy of his own room then that is his choice. His dignity was preserved as he was in his own space.

I know your visit likely upset you as finding your father lying undressed would have been a shock, but the staff explained exactly what happened to you. You seem to have assumed that they are not understanding of his condition but it sounds like, with all due respect, you understand a lot less about it than they do. I mean absolutely no malice in saying that. I simply mean they know how to diffuse a bad behavioural moment with him and do so with his best care in mind. To put it bluntly - it is much better that he undressed in his own room rather than infront of many other residents and staff.

But as a PP said, the staff have a duty of care to everyone there and although we and they know that, if your dad was being threatening, it's the dementia rather than 'him' as he was, but in the moment that's not actually useful to them when they need to think of everyone's safety.

They have to manage the behaviour regardless of the intent behind it, and by giving him a choice that he either stopped behaviour that was unsafe/unfair on other residents OR went to his room, they actually handled it well (IMO). They gave him agency, made clear the behaviour wasn't appropriate as it was, and ensured calm/safety for everyone involved. A lot of shitty care settings wouldn't have taken the same approach.

It's tough - I helped care for two grandparents with dementia and then lived with my best friend's family, including her grandma with dementia, for years, so I know how much of an emotional minefield it is (and how terrifying it can be when someone is no longer in your care but that of strangers).

In an ideal world, good dementia care would have plenty of well-paid staff who were highly trained in caring for people with dementia to allow for a high staff:resident ratio, it would give residents agency rather than treating them like children; and it would have the right balance of familiarity/routine and engaging activities. The specialist dementia home my grandma was in before she died was excellent - it wasn't just rooms full of people sitting pointed at a TV. Staff engaged residents (where possible) in cooking, baking, tidying up, gardening making crafts, sensory/soundbath/meditation-type stuff, they had masseuses and dementia-trained hairdressers visit, they played music from various eras on different days and did little 'dance' evenings where they did a few steps of proper ballroom moves and got people up enjoying themselves, showed old films to spark memories in people, had an open door policy for visitors, and had a good number of staff who had endless patience and talked to residents like people rather than toddlers. I loved visiting her there - it cost an absolute fortune and was worth every penny.

My grandma noticeably improved in mood and distress levels there compared to the previous two places which were staffed by overwhelmed teenagers and where the only activity was 'TV'.

All care staff are trained on how to reassure dementia patients. We do it constantly! Why are you assuming they did not reassure him?

You asked the staff what happened and they replied honestly and said he was being rude when asked to stop undressing. That is in no way them saying "its not his dementia! Hes just a bad man!". They just told you facts. You have assumed they thibk that. They know its his dementia, trust me.

'The staff at your fathers care home will understand this inside out. To be honest - even the most violent and aggressive of language and behaviour NEVER gives staff a negative view of any resident. We understand it is their illness talking and behaving. We also spend a lot of time with them day to day and we see the little breakthrough moments where their true personality shines through. We love these moments and on a good day there will be many. We understand how hard it is for families to visit and see the effects of their dementia (we even try to downplay these as much as possible to save families and residents being embarrassed or feeling hurt).'

That's the thing though - I DID feel she was being negative. It wasn't that he was put in his room - I understand that. It was her manner when describing what had happened to me. I didn't get a sense at all that she understood it was his illness talking. You sound lovely - when I asked the question in my thread title, the paragraph I've quoted from your post above is the kind of thing I was looking for.

'In an ideal world, good dementia care would have plenty of well-paid staff who were highly trained in caring for people with dementia to allow for a high staff:resident ratio, it would give residents agency rather than treating them like children; and it would have the right balance of familiarity/routine and engaging activities. The specialist dementia home my grandma was in before she died was excellent - it wasn't just rooms full of people sitting pointed at a TV. Staff engaged residents (where possible) in cooking, baking, tidying up, gardening making crafts, sensory/soundbath/meditation-type stuff, they had masseuses and dementia-trained hairdressers visit, they played music from various eras on different days and did little 'dance' evenings where they did a few steps of proper ballroom moves and got people up enjoying themselves, showed old films to spark memories in people, had an open door policy for visitors, and had a good number of staff who had endless patience and talked to residents like people rather than toddlers. I loved visiting her there - it cost an absolute fortune and was worth every penny.'

Housmaus - this sounds amazing! Not in the SW I suppose?

In Scotland we have speciAalist dementia units where care for these patients is one to one.
Unfortunately they are full at the moment where my relative with dementia is and he is in an ordinary care home where they struggle with his care.

VioletGlow - my dad is in a nursing home which lists 'dementia care' as one of its provisions. It's not a specialised dementia home. Perhaps that's the difference?

Unfortunately not 😔I feel for you, it's an absolute minefield trying to find somewhere. We found that via a recommendation from a home carer who worked with someone we knew - she had worked in a few homes and knew people who did, and said that was the best one she could recommend. So I'd definitely suggest trying to find any local carers you know/who work with people you know and asking them, as they often have a good ear to the ground for these things!

Its very possible that the particular member of staff maybe needs to appreciate some families will be highly strung and sensitive when hearing about their loved ones behaviour. To be fair, challenging behaviour is so small a deal to care staff that we don't really focus on it, so its easy to forget that, to families, it can be the worst thing in the world. Also, it can be quite hard for us to be approached by family members questioning a particular way we have cared for their loved one as many people have so little understanding of the day to day of people with dementia that it can create friction. The staff member may have been slightly on the defensive. If I were you I'd catch her and have a nicer conversation about your father with all hackles down. Explain how it made you feel and that you didn't want to take it the wrong way. Personally I always appreciate when families explain their worries and it always starts a good relationship with staff. It also helps us care for your loved one even more as we can then work around any issues you have and you then feel comfortable coming to us about anything. We also appreciate the opportunity to get to know what your loved one was like in life so its a win win. Is your father fairly new in the care home?

I also totally second the resident to staff ratio being a problem. Its not always possible to have one to one care for a full day, but we do as far as practicably possible. Particularly if someone is having a really bad episode. No one is ever left to struggle through something hard, be it in their minds or not. It feels real to them so we will treat it so.

I think the other issue is that regardless of whether they are specialist or not, some staff will be better than others, some will be more careful in how they describe incidents than others. Describing him as being rude or threatening also doesn't necessarily mean she didn't understand. By all means, keep a close eye, not all care staff are caring and not all care homes do a good job. My own son was abused by a carer. However, you need to look at the overall picture and be measured. Monitor it and talk to other staff. If you think there is an overall lack of care and respect then complain or move him, but be aware it is tricky finding the right place. My grandfather was in a specialist dementia placement, it was pretty dreadful tbh.

@Frequency glf you have left if you think that was acceptable care and an acceptable way to talk to a relative about their very unwell confused and frightened parent. We need less carers like you.

I guess when I type the words it doesn’t get across the tone behind them. I didn’t approach her ‘with hackles up’ at all - I just asked whether he’d requested to go to his room ( it’s unusual as he usually sits in the lounge). Even after she’d made the ‘rude and threatening’ comment I was polite and respectful. VioletGlow - you say ‘no one is ever left to struggle through something hard’ - but he was distressed and left alone in his room. I’m really glad this doesn’t happen where you work - and I think my dad deserves care like that.

Deerhurst in Bristol is a fantastic care home that caters for dementia patients. I can also name 2 in the same area that I would actively avoid!

My mother was in a care home where all the residents had dementia and I thought the staff were good with her, very patient, while yes, sometimes having to consider the other residents and not having them upset or scared (or wounded to be honest) if she was being difficult.

I'm sure the care staff are doing their best, but it's really hard dealing with someone who is angry and paranoid, and they might be inexperienced or not well managed. if you might have the option to move him, I think it'd be visiting a few different nursing/care homes, talking to the staff and just seeing what the general 'vibe' – for want of a better word – is like. I know a few people whose elderly relative spent time in two more more care homes before they found one where they seemed to settle.

You might find 100% dementia care homes better - or you might come to the conclusion that actually the place he's in is ok. But at least you'll have something to compare it to.

It's very possible that he was not distressed when he was advised to go to his room if he wanted to sit without his trousers on. Mood changes can be terrifyingly swift with dementia.

Very few carers would deliberately leave a resident they knew were distressed. Unfortunately, the majority of homes do not have sufficient staffing levels to give residents the attention they deserve.

Where I worked it was not possible to do pop-ins on residents who were struggling as frequently as they were needed. We would sit with a resident who was distressed for as long as we possibly could, even eating into our own breaks but there are other residents to attend to and generally a rota/schedule to follow.

I've left a residnt perfectly happy and lucid and eating their meal only to find them wandering the corridor and crying 5 minutes later.

Book a meeting to discuss your concerns with a manager/senior carer but from what I can see based on what you've written the care staff haven't done anything wrong other than used language you didn't like (which will not have been the same type of language they used with your dad, I promise).

It is upsetting to see your loved ones in distress but sadly that is what dementia does to a person. Even with 24/7 one to one care you can't always avoid the distress and torment that dementia can bring. It's a cruel and horrible disease.

I agree with a PP who said to ask local carers which home they would use. Carers do hear on the grapevine which homes are good and which are bad.

Good advice about asking local carers, thank you.

Of course, moving him again might make him even more confused and unsettled. So hard to know what to do for the best - and this has all happened so quickly.

I think you are being unfair to the care home dementia massively changes a person and you defend him refer to him as he was not how he is now

To me it looks like the carers, did the right thing in assisting your Father back to his room. Otherwise it could of been a safeguarding. How would you of felt if you walked in and your father was undressed in front of staff and other residents?
Im certain they will have been doing regular checks on your father while he was in his room, safe. Its a shame he was distressed on his own. Sounds like you walked in at the right time to comfort your dad, when he was getting upset.
They should not be using words like rude or threatening. They should use words like confussed, distressed, vocal ect... Like you said you father is confused with the dementia & has always been a peaceful man.
Wouldnt it be lovely if we could have 1-2-1 care for all residents in care/nursing homes/hospitals etc...
Your Dad is so lucky having you watching out for him. Not everybody has family or friends for visits.

Oh La Belle, I could have written a very similar thing.

I have had to stand back and think, yes he's in this state because he's trying to take his trousers off to go to the toilet but his brain can't tell him to call a career or press an alarm to get two carers to help him on to the commode.

Sadly in our case even though he is in a beautiful care home they are short staffed. They can't be in every persons room at once, and there's a mixture of needs and so on.

I have to tell myself that. Or it would make everything so much worse.

And I know that the bad care homes are so much worse.

It's horrible and the hardest thing I've faced in my life. We don't have long with him now.

They shouldn't in your case be confrontational with him though. I found if we complained that it was sometimes flipped by one member of staff to say he'd done something. It was also totally out of character.

How long has he been there? It does get easier and you'll get to know the staff better and find your favourite ones which will help you cope.