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Carers of people with dementia

Arranging residential care

For most carers the decision to move their relative, either from their own home or from the carer's home, into residential care, can cause great difficulty and distress. The knowledge that this isn't what their relative would have wanted, can make it difficult and the carer may have been asked to promise it would never happen. There may be concern about the quality of care available and the belief that it could never match up to the total commitment of a carer who loves their relative and understands their needs intimately.

Many have visited residential homes and considered the residents to be in much worse shape than their relative and suspect that there will be an inevitable deterioration brought about by the move. They may feel that someone who is becoming less and less like the person they used to be as dementia progresses, will become a complete stranger when they are living in this unfamiliar place. Finally there are concerns about the cost of residential care, who is going to foot the bill and how is it all going to be arranged.

Ideally, arrangements for transfer to residential care are set in motion well before the time it is actually needed. This allows the carer to visit and assess a number of different kinds of home and make an informed choice. There may be the possibility of introducing the future resident gradually, allowing them to become familiar with the place so that the eventual transfer is less bewildering for them. One elderly carer took 6 months to find the right place for his wife. He describes the criteria he used in coming to a decision.

 
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Describes how he learnt to assess residential homes.

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Sex: Male
Age at diagnosis: 69
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There's a very good book in [town] free for anybody interested you can pick it up at I think at the libraries or different places. Giving you all the residential homes in [county] and there are a lot of them. Giving you full descriptions, quarter page adverts of the things they specialise in. Because some do specialise in Alzheimer's rather than other things, you see? Other dementias. So there's plenty of information in that. And just a question of then, of going through them, making appointments and going round to see them. And they conduct you round and it gives you a good idea. You can see the, the other residents and how the carers there are behaving towards them, you know, and things like that. But it was a question of, I, I suppose I looked at about between 6 and 8 and some were too big in my opinion and far too institutional and others were rather on the small side. And conditions were rather cramped. But, it was experience again. Over a period of 6 months I became quite an expert at going through a home and knowing what questions to ask, you know. Do they this, or do they that? And you know the right questions to ask when you know the problems.

And also how some are run. Some of them obviously weren't as strict with their hygiene as they should be. And that's, the one of the, the things on the top of the list always. That, that you never have an unpleasant odour when you're in the building. They go to great lengths to make quite sure that it's all very, wholesome in all respects. They, there's no cooking smells or anything else, you know. The carers there are all very strict that they don't let their residents to go round with clothes which ought to have been changed some hours ago and things like that, you know. Some of them are a little bit slack like that I think. But I think they're very hard pushed for staff. I think they are having difficulties getting staff so it's understandable at times that they haven't got the space in the smaller places to give the service that they really should be. So I felt that [name] of nursing home], it was in [village] by the way.

Other carers stressed that it wasn't enough to visit a home by arrangement when you might find everybody on their best behaviour, you had to make unexpected visits, taking the staff off their guard to be sure of the quality of care. One carer's partner had to be sectioned (detained under the Mental Health Act) because of his aggressive behaviour. He described how he chose a home where drugs weren't used and residents were allowed to behave in ways which would not normally have been accepted.

 

Suggests ways of making sure you discover what a home is really like. He also advises being clear...

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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Look, if, if residential homes come into the picture, look at several and look at them unannounced. Don't make appointments, go and ring the bell, knock on the door or walk in and tell, ask for the manager and say that you are contemplating somewhere for your partner and can they please, first of all have they got any accommodation available that would be suitable to your partner, explain the situation, and then ask to see a room, or ask if you can just walk around and have a look around and open doors.

Walk around, if they want to come with you(r) great, open any door, and if they say 'Don't, you can't open that door someone's in bed,' OK accept that, but other doors open them, have a look, have a look at the kitchen. Use your nose. That's important in homes. A smell of urine here and there, well sometimes it can't be helped but you soon, you soon, you soon sense whether it's a permanent smell or whether it's something that's just happened. And all those kind of things but never make an appointment, always arrive unannounced and that's, that's the reception you get and the situation you find there, you'll get a better idea of whether it's gonna suit your, your partner.

That's as far as I can go on that I think really because every individual then has got to make their own decision and their own choice and before you make a decision find out exactly where you're gonna stand financially on this. Because, payment can be virtually free or partial or whole, depending on the, on your own circumstances, on the circumstances of your partner. So go into everything first and ask the questions and ask again until you get answers that you understand. I think that's as far as I can go.

 
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Found a home which suited his partner who had had to be sectioned because of his agitated behaviour.

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Age at interview: 52
Sex: Male
Age at diagnosis: 53
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[the consultant] had said that, before he was sectioned that, had I looked at homes because he didn't think that he had many months of knowing who I was.

I didn't in fact do anything about that but after he became so ill in January 2000 it became perfectly obvious that was the only route and so I talked it over with, with [his] sister who, is his only blood relative of, of that layer if you see what I mean - left. And we decided that it was, it was really the only option.

We were told that [name] would probably be in the [hospital] for six months or a year until he settled into, a level that they thought that a home would take him, became less difficult. But, we went round a number of homes which we didn't, didn't much care for until we went to [name of residential home] and we 'liked' - in inverted commas - that place because it's, if I used the term 'mad house' I think they would agree with it. They don't use drugs and people are allowed to do what they like, within reason. Whereas the other place there was, the other places they seemed to be sat like soldiers with some sort of possible chemical control, which I can understand but I didn't feel was appropriate for [him], or I hoped wasn't appropriate for [him].

And a place became available there quite quickly and they were prepared to take [him] in rather more, if I say he was, while he was more, rather more difficult than he is now, whereas the other places I think would have wanted him more zombie-like.  

Unfortunately, the need for residential care often arises urgently and the carers find themselves unprepared. It may be that caring single-handedly has suddenly become virtually impossible. Or the carer may feel they no longer have the emotional resources to cope with someone who is experiencing extremes of agitation and aggression as their dementia increases. Or the person with dementia who has been living independently has done something which brings home the risk of 'carrying on regardless'. One carer describes how she had started to find out about homes to be prepared for a sudden change.

 

Relays the advice she was given on making preparations for residential care before it is needed.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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It is a twenty-hour a day, three hundred and sixty-five day a year job. And not a job that you'd choose and I think you have got to do what the psychiatrist told me to do, you have got to feel that when the cut off point comes you have prepared yourself for it as much as you can. But while you're still caring for your, whoever the person is you're caring for at home, you've got an eye to the future, you are looking around at what there is available if and when they suddenly do a steep dive into deterioration, which can happen. There's no guarantee that [name] will deteriorate on a slow basis, as he is at the moment, he might suddenly take a steep dive and then I would be floundering.

So I think its as well to get your future support network set up as well so that if you suddenly find you can't cope, there's somewhere they can go for respite care, to give you a breather for a week. Or if you find that really you can't cope at all, you've already started getting the lists from, I got my lists from Social Services and the psychiatric Social Worker, of respite homes, residential homes, nursing homes, all of those, so that you can start looking around basically.

Because it can take a long time I gather, from what I've heard from other people to find somewhere for them to go, if you get to the point where they need to go into residential care. Be prepared basically.

The carer may accept that the quality of care and love that they can give is better when they have been relieved of the physical and mental exhaustion of full time caring. Sometimes the situation reaches a crisis where the carer is no longer able to manage, the person with dementia will not agree to going into residential care, and the only route available is to use legislation to bring about compulsory admission.

 

Describes the circumstances leading to his wife being sectioned.

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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And in the last six months that she was home with me she hardly went out at all. For about the last four months she didn't get up out of bed at all. And with the poor diet and no exercise she eventually got to the stage where I had to call the doctor in because she was collapsing. In the last two weeks that she was home I had tremendous problems. I didn't go to bed at all, listening for her to get up out of bed. I had to support her to the toilet.

The doctor came in and didn't do an awful lot. I had, I mean the doctors and the nurses came in and it wasn't until after about a fortnight that one of the nurses said 'you have to, she has to go into hospital.' They came for her at half past seven on a December evening which there was no way that she was going to move, she wouldn't go. The ambulance drivers refused to take her.

The following day the senior consultant, the doctor and a senior social worker came and asked if I'd mind if they would section her and, and that way they could take her away to ensure that she got the, the support that she required relative to her diet etc.

That was December '98, and she went in for an assessment and the assessment was that they thought it best if she had nursing care. So she has now been in a nursing home for about two and a quarter years.

Part of the process of arranging for residential care, that is particularly difficult in an emergency, is the planning for how the care is to be funded. Many carers complained that they had been given no information on what they might be entitled to and that the forms they were asked to fill in were unnecessarily complicated. Carers were surprised and concerned to discover that someone suffering from dementia might not be eligible for funding from NHS or social services and may have to use their own savings to fund their care. This was often upsetting for carers who felt that their parents would consider this use of their money 'a waste' and would rather their hard-earned savings were left as a legacy for others for enjoy.

 

Could afford to pay for his wife's residential care and was given little help claiming funding...

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Age at interview: 57
Sex: Male
Age at diagnosis: 56
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But coming back to the problems, I think it was the fact that I did not want to face and found difficulty in facing the form filling for the various grants that are possible. Perhaps it was part my problem because finance wasn't a key issue to me. I could look after myself and my wife financially while she was at home and indeed if I had to pay the full amount when she went into the care home I could cope with that OK.  

So it wasn't a problem but I found that the lack of information relative to the grants that were available which would be very, very important to some carers, especially if they had to give up generating an income. And the lack of information, the lack of guidance in what grants are for, what grants the carer is able to claim for and indeed some of the complexity of, of completing those forms. I'm relatively average intelligence I suppose but I could understand that if a carer was a lot older than I am, that could cause far more problems for them than, than it did for me. So I think they were the difficult things as a carer that I had to face.

 

Describes the chaotic and difficult process of claiming the funding to which his wife was entitled.

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Age at interview: 75
Sex: Male
Age at diagnosis: 67
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I suppose one of the things that's least helpful and irritating is the fact that I have to pay some of the costs for my wife in the residential home. I have to pay this to the County Council and I have, I had initially to fill forms in about income and capital which is fair enough. The County Council forms were quite good and reasonably straightforward but then they assessed her as receiving income support, which she didn't receive. So I questioned this and they said 'Ah but she's entitled to income support if she's in this home. So we're assessing you as if she's receiving it so it's up to you to claim it.'

And this is the least helpful thing, is claiming the income support, the rigmarole that went with it. The size of the forms, I managed to get through them but I'm sure some people would be very confused because some pages were for her income and her capital and some pages included mine and others didn't and the whole thing I found a very confusing form.

And then they assessed it wrongly and by reading carefully all the information that came with it I found that she was entitled to more, which was the amount the County Council were assessing her as receiving, than they'd given me because they had, they'd got the wrong capital figures. It's a different capital figure apparently if you're in a residential home owned by a Local Authority. I can't remember the details but I stressed this point, pointed out the paragraph in the booklet and they said 'Oh yes, yes, we'll send you another assessment.' Three times the same assessment came back. This is the least helpful business.

So eventually I got on to someone, I forget what their title was but a real complaints person, told them the whole story, they agreed with me and said 'Leave it to me, I'll sort it out for you,' and about an hour later she rang back and said 'It will be sorted this time and you'll get the proper,' and I did. But again it's push and question, push, don't accept anybody as, as being God, push and question. And that's been very unhelpful, claiming this. And of course the silly thing about it is it's all coming out of the public purse anyway. So why bother to have to go through the rigmarole of claiming it, that huge form or booklet of forms when it's being paid to a Local Authority anyway who already get grants from the State.

So it's, it's a load of unnecessary bureaucracy which I find least helpful. Bureaucracy we've got to have but unnecessary bureaucracy we don't have to have. And I feel sure that could all have been worked out by, between the County Council's assessment people and the, getting more money from the State, either via income support or whatever, however they want to get it in grants, or whatever they get it in. Rather than give everybody all this hassle, getting wrong assessments back and all the bureaucrats who are dealing with it must cost more money than the amount of money they give out! In some cases I'm sure. So that I did find very unhelpful.

In some cases where NHS funding was agreed to, it turned out to be tied to certain beds in certain residential homes so that a family might have to allow their relative to be admitted to a home that they would not have chosen if they had been in a position to pay. One carer was concerned that a home she had chosen for her mother might not be eligible for funding once her mother's own funds had been reduced to the cut-off point (£18,000 at that time) One son was paying a lot of money for residential care for both of his very elderly parents, one of whom had Alzheimer's disease. He admits that he struggled with making the decision to chose the residential home where they are staying over a cheaper option.

 

Considers whether there is ethically any alternative to the massive expense of care for his parents.

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The hardest one was, was with mother, the conflict is, is always that, the conflict is always between what you should do and what it's going to cost and what you can afford and what the, what the effect of it is on you and on your life. And I haven't, I haven't been forced into that corner. Yeah there are a lot of things we might have done if we hadn't spent money on my parents and mother's been in, in care three years, it's cost £90,000. I guess I've had to find about half of that out of, out of income which is not a small amount.

I, they're, they're both 95 now and I mean I don't see this as, I don't see this as an unending commitment but sometimes you, you find yourself with the, sitting thinking that you know there are things I want to do and this is stopping me. And at the moment you make the commitment that's the most difficult time because that is a time when you're making a, a decision which you may come to regard as, a test if you like of your own morality' which is more important, me or somebody else. Or how important are they to me? How much does it matter, how much do I care if? And you, as you go through that process you can sit in judgement on yourself a bit and it's not always very comfortable.

So that's difficult. Am I going to spend £800 a month or £1,000 a month on my mother's care or shall I find somewhere cheap you know, cheaper and I don't have to spend as much and she won't like it as much but what the hell she's had most of her life. You're asking 'am I doing that, am I doing that?' is the sort of question that you ask yourself. Well I didn't have to do that very much. And I had some fortunate breaks in that and I was also fortunate in having the ability to make that funding choice.

You know I mean if it had absolutely crippled us would I have made it? I don't want to go there and ask the question. I mean if it's, you know it's been difficult but not unduly difficult. If it had been screamingly painful in terms of our life style, would I have done it?  I don't even want to ask myself the question. So that's one thing.

Separating them very difficult but it wasn't really a, you know what's the alternative, and when you look at something and say 'What's the alternative?' and there isn't one, that's easy isn't it, that's not a difficult, that's not a difficult decision. You've made you know, you've recognised the reality of the situation is there isn't another choice. Your heart may bleed a bit for one or the other of them, but that's just practicality.

Last reviewed February 2020.

Last updated March 2015.

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