Please or to access all these features

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?

OP posts:
SaintHelena · 28/07/2022 20:50

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.

LaBelleSauvage123 · 28/07/2022 20:42

'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?

OP posts:
LaBelleSauvage123 · 28/07/2022 20:40

'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.

OP posts:
violetglow7 · 28/07/2022 20:37

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.

housemaus · 28/07/2022 20:37

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'.

violetglow7 · 28/07/2022 20:25

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.

Pebble21uk · 28/07/2022 20:20

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!

LaBelleSauvage123 · 28/07/2022 20:11

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'.

OP posts:
Frequency · 28/07/2022 20:02

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.

Alonglongway · 28/07/2022 20:01

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