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Carers of people with dementia

Home care

People who were assessed as being in need of home care usually had carers to come into the home to help with washing, dressing and sometimes meals. A few people said that the home carers were excellent, efficient and friendly. Some people are lucky enough to have access to an emergency response team that can provide help within an hour.

 
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Describes how pleased he was with the attitude of the home carers who looked after his wife.

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Age at interview: 80
Sex: Male
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Husband' And then, there came a stage when she couldn't do very much. She couldn't do much in the kitchen, and much in the house. And we got in touch with the powers that be and at that stage it was planned that we could have some carers to come in. I think, she was finding it difficult to use the initiative to get herself to bed and that sort of thing. She wasn't disagreeable about it all, just remote, and she never really inquired why all these people came, you know, it's all the same, you know, 'What the hell are all these people coming in and out of the house?'  Because a whole team of people came, I mean - you've switched that bit off - and, the, they were very good, she got on very well with them. They were a varied collection of people. 

As if they were part of the family and she was part of their family and it was the most normal thing that they were coming in here. They would talk about their children, or what they'd done at the weekend. Just friendly, not patronising. Relaxed, and never really giving the impression that there were probably many other people who they'd got to do the same thing for before they clocked off, and that kind of thing. And they came here first thing in the morning and last thing in the evening when they might not have been at their best, but they were very, very good people. 

Daughter' Oh yes, they were very good in dealing with the loo and washing and all the rest of it weren't they, that part of the thing too.  And, the personal attitude, there was one girl, she was rather glamorous. She was, you know, she was young, young wife with children, a child that the... kept on talking about. And she, would come in sometimes and say 'Hello [name], how are you tonight?' and put her arm around her and smile, and she had, and she'd be all dolled off to go off to, you know, a party or social function.

Yes, they really seemed not just to be doing a caring role but to actually care. And to have to capacity to rally somebody who may not want to do what they wanted to do in the time allotted which is another skill really. 
 

Many carers who had experience of home care were critical of at least some aspect of the service, even if they liked and trusted the individuals. High staff turnover also meant that there was little continuity, which could be particularly difficult for the person with dementia. Sometimes the person with dementia flatly refused to have help from a stranger. Other common criticisms were that the home carers were untrained, too rushed, lacked knowledge about dementia and were not allowed to be flexible.

 
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His partner's home care workers did their best but were poorly paid and untrained. He cannot...

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Age at interview: 52
Sex: Male
Age at diagnosis: 53
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So, so I had a couple of carers coming in to, in the mornings to help out there. But, that wasn't so successful because [he] wouldn't cooperate with a stranger and really it ended up that I was the only one that could get him to shave or bath or toilet really. And he was becoming, incontinent which became a problem because although the carers, the professional carers should have been trained in that respect, they weren't. They, were taken on I believe and thrown into the field almost instantly which, is unfair on them, but that was the way I felt it was. I know they were very, very short staffed but I didn't think that could possibly help them.

The other reason why [name] had to stay actually, had to stay in the [hospital] - sorry I'm jumping about - one of the other major reasons why [he] had to stay in the [hospital], in, in January 2000 after that week's respite was, no he was physically OK, it wasn't that he was physically unwell, Social Services could no longer provide a carer. The, man who was doing it [name], resigned at the New Year because the pay was so appalling, I mean he had a family, and they had no one, the, I'm not sure I can remember what the company was now, but they had no one to replace him and, without their help I could no longer cope with, with [him] and so he stayed at the [hospital], that was, that was].

The carers, well, [name of carer] did his best poor, poor man but as I say he had, he had no training I feel. The first day he started he rang me at work and he'd locked himself in the kitchen and [name] was prowling the house and [name] had told him exactly what he thought of him because he didn't know who he was and [the carer] didn't know how to respond and [name] had become, not aggressive but abusive and [the carer] was frightened.

And it was a little while before they got to know each other. They did eventually and, it was OK but certainly I wasn't very impressed with, if I could find the name of the company, it doesn't matter does it? But, I was not impressed. They were obviously, I know they were charging a lot and they were very, paying very badly. I don't understand why that's not, didn't stay in the State control. I do not understand. I'm sure that, if a private company could make the profit margins they were - I shouldn't talk like this - if a private company could make the profit margins they were making then why couldn't the Local Authorities? Then at least, some standards might apply.
 

Carers sometimes felt that either the care plans, or the organisation of specific services were not sufficiently flexible to meet the needs of their relative. One woman described several problems with 'Meals on Wheels' and the home carers, who would often arrive to get her mother ready for the day some hours after she had dressed herself. This daughter also said that what her mother needed was emotional and social support, which was arranged via friends since the home carers never had time to chat.

 

Says that home carers are a great idea in theory but explains why they often don't work well for people with dementia.

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Sex: Female
Age at diagnosis: 80
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Gradually we got to Meals on Wheels, at first only twice a week and then every day during the week and we would do weekends. And then we actually had to get carers in - this is sort of five years down the line - about two years ago. I think its a super idea, care in the home, in theory I think its a super idea to keep people in their home, by this time I'd got back to the psycho-geriatric specialist and he was monitoring her more closely and he was keen to keep her in her own home.

And you have to remember, which a lot of carers don't, I think, as I say the theory of carers I think is splendid, the practice if you're lucky its fine but normally it falls down because there's a shortage of carers, certainly in the area where we are, I can only speak about our area, but there's a shortage of carers, and the carers, some are naturally good and some just haven't a clue, and some don't always turn up, we found some that didn't come. We wouldn't have known they didn't come had we not lived opposite my mother. Or they came for half an hour and they went, instead of the half an hour, they'd go after ten minutes. 

The good ones were excellent but with the best will in the world they weren't all Alzheimer's trained. That's a shame, I think carers who are going to look after Alzheimer's people should be trained, even then I know with the vast amount of training, some haven't got the natural ability, ideally if you've got both, but at least they should be trained. Things like every time a carer came to the door, in the end we got care morning and evening, so the morning was to get her up, but they'd come any time from half past seven to eleven o'clock. Well, my mother would be wandering the road by eleven o'clock, she'd always dressed herself, not necessarily in the correct things. And you see again in the evening, if they came at half six, well she didn't want to go to bed at half six, especially in the summer.
 
 

Thinks home carers are poorly trained in dementia care but suggests being sensitive to a person's...

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Sex: Female
Age at diagnosis: 80
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Yes because somebody without dementia would know if the carer didn't come. Now, if I hadn't been here nobody would have known the carers hadn't come. So yes I think, it was partly because she had dementia because they knew they could get away with it. And also you can't generalise on anybody, we're all individual people, and some of the carers were excellent and others were less astute because the carers actually didn't have training to deal with Alzheimer's patients. 

And, or some of them may have had a sort of half day lecture or something but they didn't actually have training to deal with Alzheimer's. So they didn't actually know, it hadn't actually occurred to them that when they knocked on the door that mum would be seeing them for the, as a stranger for the first time, even if they had been the day before and the day before and the day before. To them it was a fresh person.

And I think a lot depends on the sensitivity and intelligence, the natural intelligence of, whoever is looking after somebody like that and, some people have got the sensitivity and have got the intelligence or whatever, the imagination. And some people haven't, and some people with terrific education and qualifications haven't necessarily got the sensitivity and the, I don't know the insight and the understanding.

So yes I think a lot of it was because she had dementia, a lot of things couldn't have been slipped by like that. And thank goodness we were able to see what happened, I mean nobody would have known that her Meals on Wheels didn't come until quarter to three unless a friend of mine had been there that day and could prove that that's what happened. I mean otherwise we wouldn't have known.

The attitude of the people who knew that they could get away with it? I think it's terrible. But I can't change people's personalities. I think it's dreadful. With, I think in theory help in the home is excellent because most old people want to stay in the own homes, it's their last bit of security. But in practice it just doesn't always work. You've got to have a sufficient number of carers and you've got to have a sufficient number of appropriately qualified carers and caring carers. And sadly that doesn't always happen.

People we talked with were often aware that home care services had been privatised and none said that they thought services had improved as a result. Some blamed the need to make a profit as responsible for the low rates of pay, lack of training and high turnover of staff. One man explained that he thought that paid carers need to be particularly well trained and relatively well paid because they are dealing with vulnerable people.

 
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Thinks that too much profit is being made by the private agencies, who do not train or pay their...

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Age at interview: 52
Sex: Male
Age at diagnosis: 53
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Carers who used to come in weren't really trained, they were thrown in almost immediately you said. Do you think this reflects society's attitude towards people with dementia?

No. I think it's, it's not just dementia, to any disability. I just, it's to do with putting out care in the community, physical care to, these small companies rather, rather than the council, the council. It used to be a council responsibility didn't it? And they don't seem to have the necessary training, and not necessarily the right sort of people because the pay levels are so abysmal. 

When you think how much our, one is paying or social services are paying for these, for these people and how much the, the, and how much the individual's getting as an employee the profit margin strikes one as pretty exorbitant. But what struck me as odd is, perhaps na've, why social services weren't taking that cut and training the people themselves. 

Surely, there's such a big profit margin there must be room, you know, to do that. And it's only, no, no, it's something like '10 an hour they were paying, I can't remember, I really can't remember but I know that the people actually doing the work were getting '3.80, the government minimum. And that seemed pretty poor.  
 

The care plan states how long it was expected that these visits would last, but several carers thought that their relative was not getting as much time as they were entitled to. This could be particularly difficult if the person with dementia was living on their own as they would not always be able to recall with accuracy who had visited and for how long. One family, convinced that the home carer was not doing what had been agreed, had waited outside and timed how long they were in the house.

 

Tried to explain to the home carers that even if they had been the day before her mother might...

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Sex: Female
Age at diagnosis: 80
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Gradually what I tried to explain to the carers, because I didn't want to upset any of them because I could appreciate what they were doing, but at the same time I tried to explain. I mean I'm learning too, I could only say what I'd learnt. But I tried to explain to them that every time one of them knocked on the door, to my mother it was a stranger coming to the door. So, they would say 'Well she wouldn't let me in.' and I'd say 'Of course she wouldn't, she doesn't know who you are, she's not going to open her door to strangers.'

If they could sometimes spend five minutes on the doorstep, she's very vulnerable - that used to worry me because anybody could actually go in - but if they were prepared to spend five minutes on the doorstep chatting to her and letting her lead the way, she would eventually let them in, but others haven't got the patience. I mean we didn't spy because we were busy at work but I mean we watched a carer one evening, she knocked at the door, a couple of minutes later off she went in her car, so we knew she hadn't been in to make sure that my mother had had her supper or anything.

Very occasionally the family has greater concerns about a carer. One daughter became aware that her mother seemed to losing money from her purse. She tells how she eventually realised that it was a home carer who was taking money, and how she worked with the police to establish proof of her suspicions.

 
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Describes a distressing incident when she realised that her mothers home carer was taking money...

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Age at interview: 59
Sex: Female
Age at diagnosis: 82
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Anyway, as I say we had carers in, I had gone to Social Services and asked them to recommend somebody, which of course they won't do, they give you instead a list of accredited care agencies which are agencies who meet their standards. And already there I'm aware that I'm talking in 'bureaucratic-speak' if you like, I don't know how best to put it, 'agency-speak', not necessarily 'Social Services-speak'. But its, you, you find there's a whole world out there full of these phrases which mean something different in terms of care provision from an authority than they do in terms of an individual trying to understand what they're dealing with.

I picked one more or less willy-nilly and I had established that it was probably the largest in this county, or at least in this town and was used a great deal by Social Services and I thought well if they're using it to that extent then it must be fine. But there were two problems really' in the first six months of this arrangement my mother had thirty-one people through her flat, and what we wanted were the same little team of people to come so that she stood some chance of getting to know them and begin, being able to trust them, rely on them and believe in them.

As it was she was constantly opening the door to somebody she'd never seen before, or couldn't be sure if she'd seen before which actually exacerbated her problems. I had endless arguments with the agency about this, who explained to me that they had quite a high turnover in staff and they had other people who had needs and they had to put people, carers, wherever it was appropriate or convenient for them to go. In addition there were days when nobody turned up, which I found absolutely incredible and difficult to cope with. 

I needed to know that somebody was coming into my mother's flat for that hour and would see that she had a meal. My mother would ring me and say 'Nobody came' and because of her memory problems I didn't know whether she was telling me the truth or not so I had to establish whether anybody had come. So I had to go over to the flat, see whether there were any signs of her having eaten anything, because she would say 'Oh I've had my lunch' but often she hadn't.

And then my mother started to say that she hadn't any money. I was as I say handling her pension which at that time was something around '60, so I was paying for all the, my sister was paying the overall bill, I was paying for the food and provisions for the flat, any of my mother's needs, and leaving a certain amount of money with my mother, and putting the rest of it in the bank.

So I knew that I was leaving her with something like '15 or '20 a week and out of that she was paying - with the milkman's help - the milkman, and the man who delivered freezer foods and all of them had to be primed and spoken to by me so that they could understand what they were dealing with and we just had to trust them.

So, first of all I said to her 'Well you must do because I leave money with you.' And she said 'I haven't got any money, I never have any money, I've never had any money since I came here.' 'Yes you have' I said 'You've always got 15 or '20, by the time you've spent it you should have 5 or '6 left.' Eventually I said to her that, oh she had, had a habit in more recent years of putting, squirreling money away in drawers and things because she didn't, couldn't get to the bank or whatever. So, when my sister was over I said to her 'Well you go through all mum's cupboards and drawers and look for money.' Because I said 'It's difficult for me to do it because she's saying to me 'Don't you believe me?'' I said 'Perhaps you could do it under some other pretext.' So that was done and there was no money So I said to my mother ‘I will have to look through your handbag and your purse if you’re going to keep saying this.’  ‘Well do it, I’m not telling you lies.’  So I did and lo and behold there was, we couldn’t find, I mean I reckon she must by that time have built up something like 60 or £70 at least.  And it wasn’t, or more than that, a couple of hundred pounds I would have thought she would have had, in fact I’d begun to worry about how to get it back from her to put it in the bank when she started saying she hadn’t got any.
 
And there was no money to be found anywhere apart from the odd £5 note in her handbag.  So then I said ‘Well in that, now what I’m gonna have to do is give you money and keep it all written down in a book.  And I’m going to have to come over every time anybody comes to, to see whether any disappears.’
 
And that’s what I did for two or three weeks and it became plain that after a particular carer had been in the flat there was less money than there had been before the carer came.  So I, my sister initially rang the police from where she lives, and then I rang the police, and, it was
complicated by the fact that I was going on holiday and they said, first of all the policeman said ‘Well you’ve got several choices, you can, you can ask for that carer never to come to your mother’s flat again.’  Which I found extremely negative thinking and pointed out that if we did that the person would still be visiting the other vulnerable people. Or, he said ‘You can make an accusation, you can accuse her to us of, complain to us of theft, but…’ he said ‘…of course you’re going to have to be able to substantiate it, so if you want I can tell you how, how to do that, marked notes, etc.’
 
So the upshot was that – I won’t go through all the procedures of how I had to establish that she was in the flat and the money was in the flat – but I left a large amount of money with my mother and waited outside with a policeman until this girl came out and the policeman apprehended her and she had £25 of marked notes in her purse which she said her mother had given to her.  If she’d said my mother had given them to her we would have been up a gum tree really.  But she said her mother had given them to her, she was taken to the police station where a further £25 was found in her underwear, meanwhile I went into the flat, checked my mother’s purse and found £40 was missing.
 
In all she admitted to stealing almost £400 from my mother, I asked that she be prosecuted and the case went to court and she was eventually given 18 months probation and what they call ‘compensation to the victim’, compensation was the amount she’d stolen and was no compensation at all, really.

The Department of Health has also introduced ‘direct payments’. Direct payments are local council payments for people who have been assessed as needing help from social services, and who would like to arrange and pay for their own care and support services instead of receiving them directly from the local council. None of the people we interviewed in 2003/04 had used the scheme.

Last reviewed February 2020.

Last updated February 2020.

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