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Carers of people with dementia

Respect

Before people get labelled as a person with dementia, they have the right to confidentiality, privacy and respect, like everyone else. When they become ill these rights become confused and in some cases lost.

Here, carers discuss the problems they have in trying to maintain an ethical position towards the person with dementia and also do justice to the wishes that person expressed before they became ill.

One of the earliest conflicts for the carer concerns confidentiality. Several carers, particularly those who did not live near to the relative they suspected might be developing dementia, ran into trouble when they tried to get information about their relative from a doctor or social worker. One carer reported how a GP had insisted that he would discuss with her mother whether she should take medication or not although the daughter knew that her mother was unable to understand or remember such a discussion. She described how the doctor at hospital had asked her mother whether she minded her sitting in on their consultation and so got round the problem of confidentiality.

 

The friend her mother consulted about her memory refused to discuss his findings with the daughter.

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The friend her mother consulted about her memory refused to discuss his findings with the daughter.

Age at interview: 53
Sex: Female
Age at diagnosis: 61
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She'd agreed and in fact she did it off her own back when we asked her to go and see somebody. That there was something wrong and she, I think she obviously knew that there was something wrong herself. And much against her better judgement she agreed to go and see somebody. But she, the person she chose was somebody that she'd been at university, and she saw him privately, and she knew his wife quite well.

So I think she, it wasn't an independent assessment entirely and I think she probably put her, well her university, I mean, she hadn't kept up with him particularly but I think she put him in a difficult position. And I suppose I thought because he was maybe more friendly that he, I mean more of a friend rather than a professional colleague he might be able to say 'Well I think your mother's in trouble,' or something to indicate that we were in difficulties rather than it was something that would pass.

And I, I think that's, I would have thought the ethics, I understand where his ethics are from but from, from the relative's point of view, when you're struggling and you don't know if this is something that is treatable and she's not being, she doesn't want to get treated, or if this is something that there's nothing you can do about and you're just gonna have to live with.

I think it's a big difference and if somebody is able to inform the relative that this is not a passing thing, it's not something that is treatable, I mean it's her choice not to be treated for depression if she doesn't want to. But if she's dementing then it is the relatives in the end or somebody whose gonna have to pick up all the pieces, and I think it's only fair to the relative or to whoever it is who is the carer to give them some idea that this isn't a treatable thing, it's something that's, you're gonna have to live with. And I don't know how, how the medical profession are gonna resolve that one.

 

Believes the medical profession has some obligation towards those they cared for but in reality sees little of this.

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Believes the medical profession has some obligation towards those they cared for but in reality sees little of this.

Age at interview: 53
Sex: Female
Age at diagnosis: 61
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I think, I've thought for a long time, even since my mother, you know that last crisis we had with her, that I think the medical profession has some obligation to those who care for, and I don't think they do. They have a care to their patient, and their, their obligation in the current way things are organised are to the patient, and to their confidentiality, to their integrity and so on. And not to those necessarily around them. I think, I think they do worry about them and I think a lot of GPs are concerned, but their primary responsibility is to their patient. That's in my experience.

I think with something like dementia and something that is going to involve long term chronic deterioration in somebody, if you're gonna get a good effective support for the patient you have to get the relatives - or whoever is gonna do the caring - on board as soon as possible. And to make it feel that they're part of some kind of plan or, I mean I know a lot of relatives run away from the whole thing, they don't want to have anything to do with it. But for those who are gonna do it or for those who are gonna be responsible.

The carer may eventually have to make decisions on behalf of the person with dementia and bear the responsibility of deciding on the best interests of that person. This is difficult for the carer who might wish that it was possible to ask for permission from the person the decision is going to affect.

 

Describes the difficulty of making decisions on behalf of someone with dementia.

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Describes the difficulty of making decisions on behalf of someone with dementia.

Age at interview: 59
Sex: Female
Age at diagnosis: 82
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So if you have to make decisions on behalf of somebody else you're on very shaky ground unless you can prove, I was going to say, demonstrate is a better word that you are genuinely doing it with their interests in mind and that's a big issue on occasion because of the sort of things you might be dealing with. Like giving away the brain to, for donation; like deciding to pay for a funeral in advance; like selling property and disposing of the contents of it, all those things really.

If you're doing them without the other person's knowledge, provoke a lot of questions and I have to say that although we tried to tell my mother that we were doing these things, it wasn't always possible to tell her in any way to be convinced that she understood. So we might have said it but it wouldn't necessarily have penetrated. And sometimes we didn't even say it because it would have been distressing for her, but we had no alternative but to do some of the things that were done.

Carers who have known and loved the person with dementia before they became ill may be very conscious that one of the results of the illness is that they have become negligent about things that in former times they minded about. Several carers felt sure that it was right to make efforts to see that their relative was neat and clean, even elegant if that is what they used to be. As dementia progressed it often became difficult to maintain their visits to the hairdressers, or to persuade them to accept changes of clothes. One carer described her acceptance that there were advantages in allowing her mother to dress as eccentrically as she wished, raising the possibility that too rigid respect for her former self was not helpful in coming to terms with who she was now.

 

Describes the unexpected advantages from letting her mother be seen as an 'eccentric old lady'.

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Describes the unexpected advantages from letting her mother be seen as an 'eccentric old lady'.

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I went to see her, and this was so unlike my professional mum. She had a skirt on with bright red flowers, it wasn't her skirt, and a jacket that was a pink, a bright pink, shocking pink, hand-knitted matinee jacket, which again wasn't hers. She had white tennis shoes that weren't hers, navy blue tights that weren't hers and she had her nails painted with bright red nail varnish!  

Which, my mother's never worn in her life, well she might have done in the forties you know, but that was, bright red talons! 

And, and I said, I was going to take her out and, into Bath for the day, it was the summer and I said 'Mum shall we go and change?' 'Why?' she said 'I'm fine.' It was all nice and clean and neat but it was a bizarre collection of clothes. I said 'Well shall we take your nail varnish off?' She said 'Why? I like it.' So I thought well OK, if that's what she likes.

And I took her out into Bath and it was obvious you know that she was so, she was sort of, dressed inappropriately and people were so kind. Immediately they realised that here was somebody who, who was just a rather, you know an eccentric old lady who wasn't, you know wasn't trying to fit in with society. They, they couldn't have been kinder, we had a lovely day, people fell over backwards to be nice to us. I said to mum 'We're catching a bus.' Mum stood in the middle of the road with her hand up to stop the nearest bus. And the bus driver stopped and the bus conductor sort of helped us on and they said 'If you want to stop anywhere you just tell us and we'll stop the bus for you,' and every time we crossed the road people were nice to us.

And once we'd crossed that barrier of allowing, of letting her be non-normal people were so sweet and that was a lesson to me, that was lovely. We had a really nice day out and we both, yes I mean we both sort of enjoyed it and people smiled at her, you know she'd smile back and I smiled back and, we sort of, yes, we enjoyed the minor drama of it all.

A less difficult form of respect for the former person took the form of trying to continue to do things the way they would have liked it. However several carers describe the problems they had when they tried to carry on activities which they had enjoyed with their partner or parent before the onset of dementia. There were visits to concerts ending in the carer losing their companion during a visit to the toilet. One carer describes how for a time she could let her husband continue to go to the golf club.

 

Describes making meal times pleasurable in a way he felt his wife would appreciate.

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Describes making meal times pleasurable in a way he felt his wife would appreciate.

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I've tried to, I've tried to keep up the kind of standards which [my wife] would have, would have insisted on when she was in full health. So, for example, I try to make meal times as, as pleasurable as I possibly can. We, I try to ensure that we set the table as nicely as we can we have wine to drink with our meals. I usually have some of her favourite music playing in the background. So we make, we try to make an occasion of most of the meals that we, that we have. 

I think that would be, and particularly, our favourite meal is breakfast which we always gave ourselves time to, to enjoy, even when we were both working, even when the children were at home. And that's something that we still experience in quite a formal sort of way. Again with, with music playing in the background and so on. So you know, it, it becomes something which, which gives us both real, real pleasure, that would be an example I think.

 

Has to decide whether in allowing her husband freedom she is taking an unacceptable risk.

Has to decide whether in allowing her husband freedom she is taking an unacceptable risk.

Age at interview: 52
Sex: Female
Age at diagnosis: 57
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My husband still plays golf, he has a group, mainly from church who collect him, out of great kindness and play golf and bring him back again. Now for various reasons that they're a lot older, their health is failing, the whole system is beginning to fall apart and there is the option to go to a much closer golf course, which it would be easier to get a taxi, or me to do one way or whatever. But it would mean going as an individual and picking up a partner on spec. Now that is potentially a minefield, given my husband's condition.

Now I was faced with, do I dig my heels in and try and persuade him not to pursue something that's very important to him and gives him a lot of pleasure, or do I risk knowing that the thing might become unstuck. He might play with someone who doesn't know he's got that disease, he might do something unacceptable, or react in an inappropriate fashion, and then I've got to unscramble that. And again I, I chose, I think we have to live with risk. We have to live with risk and its just deciding what's an acceptable risk, and I decided that was. And actually it came horribly unstuck, on one occasion.

Some carers worried that it was wrong to talk about a person's condition behind their back. But many had felt it necessary to inform some outsiders that the person they were caring for had problems with their memory. In some cases the result was an increase in support and friendliness from neighbours and local tradesmen.

 

Does not have a problem with disclosing her partner's condition to people.

Does not have a problem with disclosing her partner's condition to people.

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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How did you feel about telling people about your partner's dementia? You said that you had a very positive response when you did.

I had no problems with that at all because, by his own, by his own actions and. His own, the way he was acting people, when I actually told them they said 'Well we knew there was something not quite right, but we didn't know what it was.' They would ask him something and he would, or try and have a conversation with him and of course it was impossible even going back three, four years to have a conversation with him. And so people who tried to have a conversation with him knew that there was something wrong and they were quite relieved when I actually said what was wrong.

It didn't worry me at all. I didn't feel any shame or didn't feel, it was just this is what was happening and the more people knew about it, the easier it was for me to cope with what you know with what he was doing. And of course everybody made allowances for him and I mean people still talk to him, although he doesn't answer them. They still address him, which I find very good. Yeah, I would hate for him just to be ignored as if he wasn't there any more. I mean he's not in some ways, but we don't know how much of him is still there. This is the awful thing. If you could say well part of his brain is still functioning and he knows when people talk to him and he knows this and he knows that it would be easier, but we don't.

He understands certain things and then when you think he's going to understand he obviously doesn't because he just stands and looks absolutely blank at you as if he hasn't a clue what you've just said to him. So I had no problems with telling people. In fact it was a relief to me because the more people I told the more people I was able to talk to, and the more supportive people were. The CPN always used to say to me 'You're very open about it aren't you?' And I said 'Well, it's the only way I can cope. I can't hide it.' There's no way you can hide it.

One carer who is a doctor describes the legal and medical reasons why he thinks information has to be shared with other people.

 

Discusses his feelings about disclosing his mother's dementia and speculates on whether she should have a right to privacy.

Discusses his feelings about disclosing his mother's dementia and speculates on whether she should have a right to privacy.

Sex: Male
Age at diagnosis: 65
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I've had to tell various people that she's got dementia in order to for instance to sort out her financial affairs. And it's not something that's unknown in society and most of these places it's simply an operational reason for them to change things and so that's it. I've never felt unwilling to explain to other people that my mum's got dementia. I think at work I've told some people and I haven't told others.

So I try and respect her privacy in that sense, I'll only tell somebody if I feel it's necessary for them to know in order to explain for instance why I'm not there or can't do something. I suppose I use it as a justification in those terms which might be slightly wrong. But no I've not really felt that it was a, it was a problem.

Because looking after somebody with dementia is a team based activity and that requires a lot of people with a lot of different skills and I think then, it's, it's often means that you know the details of the illness and problems are more widely known maybe than another disease. But then you can argue that the person, the patient themselves doesn't mind. Now that's difficult because obviously ethically it doesn't matter what they think, it's a bit like psychiatric illnesses and just because a patient doesn't appreciate there's an ethical issue involved doesn't absolve us from taking responsibility for that. I think again I've been so sort of wrapped up in the emotional caring and financial and organisational issues that it's not been at the top of my list of priorities I have to say. But it's an interesting question now you've raised it. I would also feel that that looking after came first, and I'd worry about the ethical issues afterwards. But that's, that is a pragmatic view which might be mine rather than other people's.

Last reviewed February 2020.

Last updated March 2015.

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