What would happen if ......
- Thread starter Jenni_B
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That gave me a laugh the MIL came home from respite yesterday and said she knew a couple of people at the home, I said oh that's nice who were they? She said dont ask me I cant remember!
Those anecdotes made me smile too.
I passed on your comments - and fear I have plunged my sister into deeper despair! She has convinced herself that her husband will be deemed to have fluctuating capacity and won't agree to move to a home. I am not so pessimistic about the capacity question, but guess that the outcome of a test may depend solely on the competence of the person carrying it out. If they followed best practice (which the LA's social worker did not), I think they would find my BIL consistently unable to retain and repeat information relating to any decision. However, something puzzles me:
@Sirena - you say you didn't tell your mother that you were moving her into a CH permanently, and you and others advise that love lies are the best way of approaching the move, either for respite or permanently. I totally get this. But presumably at some point the home must have carried out a needs assessment and a mental capacity test on your mother? May I ask how that was handled, who did the test (social worker attached to the home?), how experienced they seemed at applying it, and how your mother reacted? Presumably they had to ask her specifically whether she wanted to live in a CH, and found her not to have capacity? Did it distress her at the time but by the time she made the physical move she had forgotten all about the assessment - so the love lie worked? If these questions are too personal, please say, or if you would prefer to answer in a private message, please do.
I passed on your comments - and fear I have plunged my sister into deeper despair! She has convinced herself that her husband will be deemed to have fluctuating capacity and won't agree to move to a home. I am not so pessimistic about the capacity question, but guess that the outcome of a test may depend solely on the competence of the person carrying it out. If they followed best practice (which the LA's social worker did not), I think they would find my BIL consistently unable to retain and repeat information relating to any decision. However, something puzzles me:
@Sirena - you say you didn't tell your mother that you were moving her into a CH permanently, and you and others advise that love lies are the best way of approaching the move, either for respite or permanently. I totally get this. But presumably at some point the home must have carried out a needs assessment and a mental capacity test on your mother? May I ask how that was handled, who did the test (social worker attached to the home?), how experienced they seemed at applying it, and how your mother reacted? Presumably they had to ask her specifically whether she wanted to live in a CH, and found her not to have capacity? Did it distress her at the time but by the time she made the physical move she had forgotten all about the assessment - so the love lie worked? If these questions are too personal, please say, or if you would prefer to answer in a private message, please do.
I’m not @Sirena, but I moved my mum to a care home without telling her as, in my opinion, she was no longer safe at home. She had a diagnosis of probable vascular dementia but no one had explicitly said she had lost capacity.
She was not happy with my decision and kept on trying to leave. The home had her assessed for a Deprivation of Liberty Safeguarding order (DoLS). This is done by a psychologist and social worker. The sw who phoned me afterwards said it was clear mum no longer had the capacity to make decisions about where she lived. It is supposed to be done every year in case things change.
I was worried they would say mum could leave. At the time she could appear fairly capable and was certainly capable of making small choices such as what to eat. She, however, had no clue that she was a danger to herself and others.
She was not happy with my decision and kept on trying to leave. The home had her assessed for a Deprivation of Liberty Safeguarding order (DoLS). This is done by a psychologist and social worker. The sw who phoned me afterwards said it was clear mum no longer had the capacity to make decisions about where she lived. It is supposed to be done every year in case things change.
I was worried they would say mum could leave. At the time she could appear fairly capable and was certainly capable of making small choices such as what to eat. She, however, had no clue that she was a danger to herself and others.
@Jessbow thank you for the giggle over the Irene muddle.
@reedysue I always thought capacity was relevant to the decision being made e.g. would you like ice cream or custard vs would you like to live independently or in a care home being significantly different issues and everyone should be supported to make choices. The issue with dementia is one of safety as much as capacity? A test that shows memory function is good but you wonder if it’s still possible to pass it but be unsafe at home
@reedysue I always thought capacity was relevant to the decision being made e.g. would you like ice cream or custard vs would you like to live independently or in a care home being significantly different issues and everyone should be supported to make choices. The issue with dementia is one of safety as much as capacity? A test that shows memory function is good but you wonder if it’s still possible to pass it but be unsafe at home
I would say yes to that!
My dad is virtually immobile except with a gutter frame.He is what is known as “high functioning “.
He is self aware and puts on a good front for the professionals.
At night time however he is on is own and in a nursing bed with cot rails so he cannot get out .He has a pendant to press(never will because he cannot remember he has it to do so).
I have brought up to SW and GP numerous times about it being a safety hazard.But because he is deemed to have “capacity “ I am stuck.
He is self funding.But if you ask him days of the week or his address he has no idea. But hey ho”he has capacity “
@Splashing About The questions mum was asked related mostly to safety at home like cooking, locking doors etc. Although she could answer the basic questions she could not answer things like what would be the consequences of forgetting that a pan was on the stove or forgetting to turn a fire off.
As my mother refused to go to the memory clinic it wasn't till she had a meltdown in the doctor's surgery and a doctor from the clinic went to see her that we got mum's diagnosis. I wasn't there so don't know what he asked her, but at the doctor's surgery she did well at basic 'repeat three words' type questions. That was because her memory wasn't that bad. The main problem was, as my husband say, her logic box was fried. She thought it was obvious that the reasons she couldn't find things was because the neighbours came in and took them (and brought them back), not that she'd misplaced them for instance. Tricky to assess without a thorough examination.
Dad always wants toast but is on a soft diet.
If you ask him does he understand the consequences of maybe having toast and choking he doesn’t get it..
As you say there are 3parts to the question.He cannot retain it or understand the consequences.But will say yes. So as far as some people are concerned he has it because of that one word..
If you ask him does he understand the consequences of maybe having toast and choking he doesn’t get it..
As you say there are 3parts to the question.He cannot retain it or understand the consequences.But will say yes. So as far as some people are concerned he has it because of that one word..
We did the day care at a care home thing for my Mum, it worked very well and eased the transition into full time care. Only really possible with self funding though.
You may also want to try "the doctor has said that you must spend some time in xxxxxxx as rehabilitation ".
Sometimes people won't accept what we say, but if a doctor suggests it, they might just consider.....
Mummy - total harridan with me, is all smiles when the nice doctor suggests something......
Sometimes people won't accept what we say, but if a doctor suggests it, they might just consider.....
Mummy - total harridan with me, is all smiles when the nice doctor suggests something......
My mother has been in the care home since Feb 2018 and she hasn't had her DoLS, apparently it's not uncommon to wait a couple of years in this area. It doesn't matter, because my mother likes it there and doesn't want to leave (and she's self funding). If the move to a CH is disputed, either by the PWD or other relatives, an emergency DoLS is arranged so that is the point where a potential challenge would arise. Also, if you are relying on LA funding, capacity would be assessed early on.
However my mother has been in hospital twice in the past 18 months, and SS were involved (this is routine with hospital stays, SS Safeguarding are always called). The issue of capacity was never raised, Safeguarding just contacted me and the CH to ensure she was in a suitable environment. So SS are well aware she's in the CH.
The CH do of course do a needs assessment, but that is quite different to a capacity assessment. They are just checking they can meet her needs.
As to what my mother would reply to the questions - I have absolutely no idea. I doubt she would understand what they meant, but she would tell them what she thought they wanted to hear. Her speech is quite muddled and I think it would be clear she's living in an alternative reality, if the SW had any experience at all.
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Thank you all very much for your replies this morning!
@Sarasa and @Sirena that is really helpful information and revives my hope somewhat. Thank you so much.
I've also spoken to a council run home this morning and now have a much better understanding of their process - including that they can't accept even a self-funder without recommendation by the PWD's Care Manager aka SW. But were that to happen, the PWD would spend a week at the home, for in-depth care needs and also mental capacity assessment in the first instance. None of this was made clear to my sister by their SW!
Rambling aloud here, and please ignore if I'm spouting what you all know upside down and backwards, but it seems to me there is often confusion between general cognitive ability (as tested by GPs and Memory Clinic staff in diagnosis and progression of dementia?) and mental capacity (to make a particular decision at a particular time) as per the Mental Capacity Act. There is a Code of Practice for carrying out a mental capacity test https://assets.publishing.service.g...7253/Mental-capacity-act-code-of-practice.pdf
This from page 45: "What does the Act mean by "inability to make a decision"?:
A person is unable to make a decision if they cannot:
1. understand information about the decision to be made (the Act calls this ‘relevant information’)
2. retain that information in their mind
3. use or weigh that information as part of the decision-making process, or
4. communicate their decision (by talking, using sign language or any other means).
The first three should be applied together. If a person cannot do any of these three things, they will be treated as unable to make the decision. The fourth only applies in situations where people cannot communicate their decision in any way."
My sister's and BIL's SW did not get anywhere close to assessing his capacity in this way, so I think her conclusion can be discounted. When I see my sister next week I'll be able to read the written-up assessments and then perhaps help sis make a decision(!) on next steps. Frankly, though, I think a complaint may well be in order. At the very least the woman has misled my sister at least once with inaccurate information, whether deliberately or otherwise.
@Sarasa and @Sirena that is really helpful information and revives my hope somewhat. Thank you so much.
I've also spoken to a council run home this morning and now have a much better understanding of their process - including that they can't accept even a self-funder without recommendation by the PWD's Care Manager aka SW. But were that to happen, the PWD would spend a week at the home, for in-depth care needs and also mental capacity assessment in the first instance. None of this was made clear to my sister by their SW!
Rambling aloud here, and please ignore if I'm spouting what you all know upside down and backwards, but it seems to me there is often confusion between general cognitive ability (as tested by GPs and Memory Clinic staff in diagnosis and progression of dementia?) and mental capacity (to make a particular decision at a particular time) as per the Mental Capacity Act. There is a Code of Practice for carrying out a mental capacity test https://assets.publishing.service.g...7253/Mental-capacity-act-code-of-practice.pdf
This from page 45: "What does the Act mean by "inability to make a decision"?:
A person is unable to make a decision if they cannot:
1. understand information about the decision to be made (the Act calls this ‘relevant information’)
2. retain that information in their mind
3. use or weigh that information as part of the decision-making process, or
4. communicate their decision (by talking, using sign language or any other means).
The first three should be applied together. If a person cannot do any of these three things, they will be treated as unable to make the decision. The fourth only applies in situations where people cannot communicate their decision in any way."
My sister's and BIL's SW did not get anywhere close to assessing his capacity in this way, so I think her conclusion can be discounted. When I see my sister next week I'll be able to read the written-up assessments and then perhaps help sis make a decision(!) on next steps. Frankly, though, I think a complaint may well be in order. At the very least the woman has misled my sister at least once with inaccurate information, whether deliberately or otherwise.
Hi again @Jenni_B
Yes I've seen those capacity criteria before. It's as clear as mud really. Some PWDs can give a good 'hosting' display and appear to understand and reply coherently, without really knowing what they are replying to. They will also answer a question one way in the morning and in the opposite way in the afternoon. There are stories on here where a PWD is assessed as having capacity and given what she supposedly wants, only for her to deny saying it and say she wants the reverse. I think you need an experienced SW to navigate that minefield.
I should mention that had my mother been capacity-assessed before moving to the CH, and asked if she would like to move there, she would almost certainly have said no. People with dementia want to stay with what is familiar and have no concept of the risks they face (or the strain a carer is under), plus my mother would have been in hysterics about what would happen to her cat. Whereas within weeks of moving, she had forgotten about the cat and enjoying herself tremendously.
Re the criteria used by the council home, that may not be the same for all of them - obviously I don't know as we didn't go that route. But I have never heard of a person being admitted for a week for assessments, normally that is done in the person's home (or in hospital). When they move in there is a 4 week 'trial period' to ensure they can meet the PWD's needs, which I think is common to all CHs.
Yes I've seen those capacity criteria before. It's as clear as mud really. Some PWDs can give a good 'hosting' display and appear to understand and reply coherently, without really knowing what they are replying to. They will also answer a question one way in the morning and in the opposite way in the afternoon. There are stories on here where a PWD is assessed as having capacity and given what she supposedly wants, only for her to deny saying it and say she wants the reverse. I think you need an experienced SW to navigate that minefield.
I should mention that had my mother been capacity-assessed before moving to the CH, and asked if she would like to move there, she would almost certainly have said no. People with dementia want to stay with what is familiar and have no concept of the risks they face (or the strain a carer is under), plus my mother would have been in hysterics about what would happen to her cat. Whereas within weeks of moving, she had forgotten about the cat and enjoying herself tremendously.
Re the criteria used by the council home, that may not be the same for all of them - obviously I don't know as we didn't go that route. But I have never heard of a person being admitted for a week for assessments, normally that is done in the person's home (or in hospital). When they move in there is a 4 week 'trial period' to ensure they can meet the PWD's needs, which I think is common to all CHs.
And thanks again, @Sirena!
Yeah, you're right to raise the week-long admission for assessment procedure. Earlier, I rang another couple of council-run homes to test for consistency of information, and they operate as you outlined. I've since found out that the first home I rang has recently changed from a respite-only home (NHS-only referrals, I think) to residential. I suspect that perhaps the week-long assessment might have been for people discharged from hospital, to see if they could go back to their own home or needed residential care? The person I spoke to is just back from maternity leave so unless we had our wires completely crossed from the start, she may have some catching up to do on new procedures, as apparently they should be standard across the county!
Tomorrow's job is phoning private care homes.
Yeah, you're right to raise the week-long admission for assessment procedure. Earlier, I rang another couple of council-run homes to test for consistency of information, and they operate as you outlined. I've since found out that the first home I rang has recently changed from a respite-only home (NHS-only referrals, I think) to residential. I suspect that perhaps the week-long assessment might have been for people discharged from hospital, to see if they could go back to their own home or needed residential care? The person I spoke to is just back from maternity leave so unless we had our wires completely crossed from the start, she may have some catching up to do on new procedures, as apparently they should be standard across the county!
Tomorrow's job is phoning private care homes.
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