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Carers of people with dementia

Problems with provision

Care, and in particular care of the elderly and the mentally ill, is supposed to be high on the list of priorities in today's health and social services. But the experiences described by carers of patients with dementia we talked with demonstrated serious gaps in the service provided (see ‘Assessments and care plans').

Several carers suggested that what they needed was for there to be a care manager who would be responsible for the detailed understanding of the circumstances of each person requiring care and the ability to ensure that it was provided from the appropriate source. As one carer described, this person should be able to anticipate the problems that are likely to arise so that there does not have to be a crisis.

 

Suggests there should have been forward planning by a care manager.

Suggests there should have been forward planning by a care manager.

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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There are other Local Authority homes but there's not another one that provides day respite and residential care. And as the woman said, she said 'If we have him assessed then if you put him on the waiting list for the day' - because there's a waiting list of course - 'for the day care, then if there was an emergency,' and say I was ill or had to go into hospital or something, 'then we'd have all the paperwork in place to put him in, to bring him in, straight into respite care.'

So this is the sort of thing that's needed, is the back-up services in case anything goes wrong and the support services from a day-to-day point of view. I know that the nursing care is there if you need people to help bath and to help dress and this sort of thing, further down the line, I know that's in place but I think this emotional care is very important and this ability to allow the carers to have space to themselves is vital.

Another suggestion was that a person at home with dementia should be assigned a Community Psychiatric Nurse (CPN) who would make regular visits where they could assess the state of affairs and be able to predict the possibility of impending breakdown in the arrangements before a crisis arose.

 

Suggests regular visits from a CPN would help inform and advise the carer and allow for advance planning.

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Suggests regular visits from a CPN would help inform and advise the carer and allow for advance planning.

Age at interview: 59
Sex: Female
Age at diagnosis: 82
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I think there ought to be, I think that people in my mother's position ought to have a CPN involvement, if it is only every quarter or even every six months where there is an input from the CPN. The CPN will visit and talk to that person and hopefully there's no need for some time, by the time they're in a nursing home, or would have notes to fall back on and would be able to do some sort of assessment and gauge how things were going.

Why do I want that? Partly, as I said because it would be a, she would be being interpreted to me by an informed - a medically informed or mental health informed person - which might make sense to me of some of some of the things that don't make sense. And this was really all more relevant perhaps a year ago when I knew less than I do now, when I couldn't get a perspective on it and when my mother had lived already a good year longer than any of us thought she was going to and looks, and she could go on living for, who knows, its open-ended really

Failure to communicate within the services causes unnecessary confusion for carers. Failure to point them in the direction of the invaluable sources of advice and support outside the health services leaves them deprived of help. All those who had benefited from advice and support organisations agreed it made an enormous difference to the quality of life both of the person with dementia and of their carers. Many doctors have little real knowledge of the problems associated with caring for dementia but they should make the effort to make sure they refer people to the agencies that do have this knowledge.

 

Denying carers important support by not giving them any information about for example the Alzheimer's Society.

Denying carers important support by not giving them any information about for example the Alzheimer's Society.

Age at interview: 57
Sex: Male
Age at diagnosis: 56
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I think perhaps there could have been a lot more liaison for, for the support that is available, specifically at the earlier stages. There doesn't appear to be any communication at all between any of the services or the support services. I didn't even become aware until the Alzheimer's, that the Alzheimer's Society existed until my wife was actually in the, in a care home.

So I think that for carers there ought to be some sort of procedure, system, communication between the specialists that are diagnosing, between the doctors, between whoever we saw to ensure that the carer is eventually made aware of the services available. Because from my own personal experience when I did find that they were available and from talking to other carers now within my role, they all think they're coping OK. They usually aren't aware of the support that is available to them. And they feel very, very much on their own and if they're asked if they're OK I would guess and say that nine out of ten would say that they're OK when in actual fact they're usually struggling. And that's from my own experience and indeed talking to other carers now.
 

Failure to liaise effectively can result in delays, misunderstandings and actual damage to the patient's health. Carers have their work cut out caring, but several carers described how they also had to fight to get essential equipment and to overcome intolerable delays in delivery. In this case the item required was expensive and while that doesn't excuse the failure to get a move on it may be one reason why this happened.

 

Found it necessary to use threats to get equipment his wife urgently needed.

Found it necessary to use threats to get equipment his wife urgently needed.

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I had to go in to the hospital yesterday to see somebody from the General because just sitting on an ordinary chair, well you know not a like an armchair but an ordinary chair, taking she's had two operations on her hip and she'll keep pushing herself up. Well in the last week she's had some like inflatable things put round her leg, her foot because she'll keep pushing herself up because she can't get comfortable because I think they're blistering. And I got myself annoyed about that, not at the nurses, no way because they were, they are great, but the fact that she's been going to have this chair. I offered to buy it. I offered to pay for her one. And because they were £1,000 but they said there was no need, they should, they're getting one for her.

And so I got, I told the manager, that's what they call them now, I don't think it's sister, I told the manager, because she's a lovely lass, I call her [name]. I had her on the, I says 'Look [name] I want you to get in touch with somebody,' I says 'because I've got a complaint.' She says 'What's that?' I says 'This chair.' 'Oh,' she says 'I know, I know.' I says 'Well look at her, she's got these blisters on her feet, or whatever they are,' I says 'if they burst and she gets any infection and the media today have been telling about a lot of infection that's going around in these hospitals,' I says 'I'll take the NHS for everything they've got.' I says 'If she doesn't get a chair.' That was last Friday.

And yesterday there was somebody from the hospital came and she apologised. She's the one that orders all these things and she'd never been, there was a physiotherapist, sociologist I think you call them, somebody else, there was about four people suggested she should have this seat, proper seat. It's never got to her, so she tells me. And I think I tend to believe her. But I went there with me boxing gloves because I thought I was gonna have to fight them yesterday. And she was full of apologies.

And they're trying to get her a, they've got to get measured for these chairs apparently. And they're gonna try and hire one, well they're gonna try and hire two because there's somebody else in there in the same position. So, and get them measured up and they'll get them ordered and they're gonna get them. She said, I says 'I, I hope it's done quick.' She says 'Well I cannot say it'll be done this week.' I says 'I realise that, I'll give you a month.' So if she hasn't got it in a month, there'll be another outburst.

Seemingly ridiculous bureaucratic complications could also mess up the provision of much more mundane items. Incontinence pads, which are incredibly important both for relieving some of the laundering problems of the carer but also for protecting an immobile person from skin damage, were sometimes unavailable for a newly incontinent person being discharged from hospital because they had to be ordered through social services and there was a 6 week delay. One carer said that she was rationed to 5 pads a day which was nowhere near sufficient for her husband, but that after he had died, no-one was prepared to remove unopened packets of pads which hadn't been used.

Other items essential to the care of a bedridden patient took months to arrive. Until a suitable hoist could be installed one carer was unable to lift her husband even with help from another person. She had to choose whether to risk serious injury trying to lift him on her own or accept defeat and allow him to be admitted to hospital with the risks, and expense to the NHS that that involves.

Some of the most difficult caring problems occur with younger people suffering from frontal lobe dementia. While often physically fit and active they may sometimes be very difficult to look after because of extremely agitated behaviour including sometimes violence towards others including their carer. These cases are relatively rare and it is often incredibly difficult to find any facility which can cope. Often the carer who is a husband or wife is anxious to keep such people at home but is made desperate by the inability of day care centres to understand and cope with the problem of the young agitated person with dementia.

 

Describes the efforts involved in obtaining suitable day care for a younger person with dementia.

Describes the efforts involved in obtaining suitable day care for a younger person with dementia.

Age at interview: 52
Sex: Female
Age at diagnosis: 57
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As a result of that and as a result of us making a formal complaint I now have a CPN who meets with me well, so far we've probably had twice as many meetings as I ever had before. My husband has a placement in a, actually a psychiatric unit because of his age and the Alzheimer's unit would be wholly inappropriate. He has transport that collects him from home and takes him in on a Friday morning. He has a session in a carpentry unit under supervision, he has lunch there and he has transport back again. Now if the problem was finances, resources, I would suggest that it wasn't terribly well managed in respect of what they've ended up having to fork out if that really is the problem.

So you know, having kicked and screamed we now have got what I think a lot of areas in the country, dealing with these problems would consider is far more appropriate care, bearing in mind my husband's been off sick since 1995 and this situation only started in May this year, 2001. But its all been a desperate fight and its required huge energy.

There was a strong suspicion among carers based on their experiences that the quality of care suffered when social services decided to privatise some of their provision. Their complaint centred mainly on the home carers but also concerned carers in nursing homes. There was a feeling that there was no effective training and that many nurses and carers had little experience and no understanding of the problems of people with dementia.

 

Carers who came to look after his wife did very little for her.

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Carers who came to look after his wife did very little for her.

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On the whole I found the carers and caring service, because they were, they were got by the DSS but they were private firms so all they're looking to do is make a profit and it showed. It showed in the fact that some of the girls that came just didn't, they didn't care so. And really that would put me on thorns because when they came again I wasn't in a position really to say too much at that time so I just let it go but it bugged me quite often.

The DSS lady did eventually ask me what they did when they come here and I said 'Well they look after [name]' and she said things like 'Well do they do any ironing or cleaning or whatever?' I said 'Well not that I know of.' She said 'Well they should do certain jobs.' I said 'Well I wasn't too bothered whether they did these jobs or not but she was concerned that they should be doing certain things. I mean all I was concerned about was what they did for [name], not whether they did the ironing or stuff like that. But apparently they do have set routines, which proved to me that some of them were just sitting and not caring which wasn't very pleasant. Out of all of them there were only two who ever took her out. All the rest didn't take her out at all, even for a walk round. So as far as that side of things were concerned I weren't really happy at all.

Considering the enormous benefits provided by carers, removing as they do much of the burden which otherwise would have to be carried by the health services, it is shocking how many gaps there are in the support available for carers.

 

Gives suggestions for making the life of the carer less difficult.

Gives suggestions for making the life of the carer less difficult.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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We're very much user unfriendly towards the position of people with Alzheimer's or dementia.  And it's only when you're involved in it that you realise how little it happens. I'd like to see, not the sort of things that cost money but the sort of, I was saying you know, simple things like making provision for leave for people who are looking after their parents, not just those maternity and paternity leave and accepting that. That's a good use of a situation. Again having, I mean well another big problem of having someone with dementia is, is simple things like going to shops. Because you need to be able to park outside, but nobody seems to realise that, but nobody seems to, there's no provision for that, and that's really quite difficult.

And this matter with finances and so on. I think the Government can do a lot more without necessarily putting a lot of money in. I think more sort of legislation, more to making life easier for people with, with dementia.  But at the same time equally I do think they need to realise that somebody like my mother could have caused considerable financial hardship to us her children, by her actions.

And I think we need legislation, at the very least to prevent that happening, because I really don't see why I should have lost out because my mother had dementia. As it happens luckily we didn't, but my mother's dementia must have cost us probably about £10,000. And you can't, you can't insure against it or anything like that. So I think more, more support certainly is needed, I think financial aid towards people with Alzheimer's. We did get the attendance allowance but once mother, once mother was in a residential home, but it wouldn't have applied to us I think just being long distance carers.

So I think, yes, more sort of legislation to change attitudes and more and more recognition of that a carer can have financial responsibilities which could end up with them being impoverished. I mean it, I could have ended up not having to enough money to pay my mortgage if I'd had to pay out, some of the bills I had to pay for my mother.

 

There is too little understanding of the needs of the person with dementia or their carers.

There is too little understanding of the needs of the person with dementia or their carers.

Age at interview: 60
Sex: Female
Age at diagnosis: 80
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How little we think in terms of if, if sort of middle aged people with middle class ideas making provisions for people with dementia. You may have seen there was a fuss sometime about [county] wanted to supply people with microwave meals rather than 'Meals on Wheels'.  Well not every elderly person knows how to use a microwave. Mother didn't understand about best before dates and that sort of thing. I think there's an awful lot of us imposing our ideas on them.

And it also annoys me when I go to Sainsbury's down the road and there's special provision for mothers with babies, but there's no way you can take an elderly person who perhaps can't walk very far who might wander off. And you park in a disabled sticker place, you know you could be in trouble and no, nobody sort of, there's no provision, we're not, we don't think in those terms. That is one of the big defects that we're not really sort of elderly or dementia minded.

We think, you know, we see parents and kids. We don't see parents and elderly. Because again I am sure you, you have it in your job, my employer's going for maternity leave and paternity leave, but there's no question under this spectrum of going for elderly parent leave. And that used, that used to annoy me because you could have as many problems in that way as you could with kids. So I think we, we're not at all elderly, elderly aware.

In February 2009 the Department of Health launched ‘Living Well with Dementia' A National Dementia Strategy’ in England to be implemented over a five-year period to 2014. It sets out 17 objectives for transforming dementia services, with the aim of achieving better awareness of dementia, early diagnosis and high quality treatment at all stages of the illness and in all settings. Since the National Dementia Strategy was launched in 2009 there have been many improvements in the care and support of people with dementia across the country. However services differ across the country. In 2016 the Department of Health published the ‘Dementia Atlas’, an interactive map of England, which shows standards of care by area.

 

Last reviewed February 2020.

Last updated July 2018.

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