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Carers of people with dementia

Difficulties in taking medication and overcoming them

Where people with early symptoms of dementia are living on their own, carers often have reason to be concerned about their ability to use prescribed medication appropriately and there is not always an easy solution to this.

 

Describes how it was impossible to expect her mother to manage her own medication.

Describes how it was impossible to expect her mother to manage her own medication.

Sex: Female
Age at diagnosis: 80
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There were times when sadly, I feel awful because we argued, I mean she'd say 'I haven't had my pills' and I'd say 'You have had them.' Which I shouldn't have done but she had this little pillbox and she'd come knocking on the door saying 'I haven't had any pills, I've got to have these pills, they're for my blood pressure, I must have them.' And I'd say 'Well you have.' 'Who gave them to me? You don't understand, I need to get to a doctor, you don't understand, I've got to have these pills to stay alive.' Then we'd go back with her and she'd come back ten minutes later.

So when we went to the psycho-geriatric specialist, he then suggested, I don't, I can't remember the medication but its an injection every fortnight. I said 'Oh that'll make her sleepy.' But I then, it's a learning process, I just feel I've learnt so much and I've still got so much to learn because as he said to me 'Surely its better for her to be slightly sleepy in her own home than not sleepy and worrying?' And I realised, you've got to get the balance, you don't want her too sleepy to enjoy some quality of life.

So anyway, we tried these injections but sadly my mother doesn't want to be injected by a stranger and the CPN found it difficult to inject her, but fine if I was there or my husband. So we did explain all the hours we could be there, I said I could come home early from work, but sadly, whether they forgot or whether they simply couldn't manage those times, but they still carried on coming hit and miss, and so we didn't know when she was being injected, when she was being visited by whom, and she couldn't remember.

It did seem I think probably soon after she'd been injected it probably helped and then it would wear off and then she'd get very agitated again.

When people develop dementia they may already be taking various prescribed or other medicines for a variety of conditions. It is often the case that people with dementia refuse to take their medications. This may be because they are suspicious of what is being offered or just part of a general reluctance to accept any persuasion from a carer. The carer may have to try to decide which medication to take a really firm line on and which can be left out. They will be helped by a GP or specialist who is able to make it clear the consequences of leaving off tablets and which ones might not be essential. One carer found that if he explained to his wife what he was doing she would usually accept the medication he was offering.

 

Problems persuading his wife to take the medication which she needed for her chronic obstructive airways disease.

Problems persuading his wife to take the medication which she needed for her chronic obstructive airways disease.

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But as to giving it direct, at first I used to give it to her, in her hand and she'd take it. But then I'd, later on I'd give it to her in her hand and she'd put it down, and I'd put it back in her hand and she might take it.

Then later on I'd put it in her hand and she'd put it down and she wouldn't take, it so I'd give it to her in her mouth, with a drink and she'd take it. And then later on still, I'd give it her and she'd put it in her mouth and then we'd find it hidden somewhere else. Or she'd spit it out or whatever. So in the end we started putting it, grating it down, into powder and either putting it in her tea, in her food or whatever, so that, she'd have it, but then she'd, sometimes wouldn't eat or wouldn't drink. So then, we just couldn't give it her.

And I, I'd tell the doctor and they'd say 'Well, a day or two wouldn't matter.' Which I suppose really it wouldn't but sometimes it, that was a big problem I think, giving the medicine because it, sometimes we just couldn't give it her and we knew she needed it. Especially with the other things she had like Chronic Airways Disease and that if she had she needed antibiotics and we couldn't give them to her, and of course I'd talk to the doctors but, if you can't give 'em to a person, its not like a dog, you can't, you just have to not give it.

Unfortunately I couldn't, at times I couldn't find a way round that other than not giving it to her, because if she wasn't drinking and eating, because she did have, at times those problems where she just didn't want anything to eat or drink. So the first opportunity when she would have a drink or something to eat, in went the medicine and that's how we carried on. But that was a lot, a lot later on. Mainly we did get the medicine down her, but you know later, later on it did become a real problem, that. But we done the best we could.
 

 

Persuades his wife to take her tablets by explaining to her why she needs to take them.

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Persuades his wife to take her tablets by explaining to her why she needs to take them.

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On the whole that's gone quite well. And particularly once we settled down into, a regular pattern, of morning and evening tablets. Occasionally she is reluctant and, what I usually say to her then is, remind her why she's taking them, that these are designed to, essentially to make her feel calm and, content and as relaxed as, possible. And it is important that she takes them and that these tablets have been, recommended by her consultant, who she has a great respect for. And normally she will then, take them although she says they're horrid to take. 

So I don't think there have been any particular difficulties at all. Occasionally when she's in a particularly stressed state she's absolutely refused to take them and on one or two occasions she's thrown them across the room, and at both points I've simply let it go for that time and when she's calm we resume the, normal pattern of, taking tablets.

Carers might feel guilty about having to deceive the person with dementia to get them to the accept medication, but usually accept that to do this is better than to suffer the effects of under-medication. One daughter would trick her mother into taking her medicine by pretending that they were both sipping a glass of sherry. However she was concerned to think that carers in a residential home might be able to slip her mother some medication without her knowledge, and possibly without authorisation from herself or her doctor.

 

Explains how she managed to get her mother to take her medicine in a glass of sherry.

Explains how she managed to get her mother to take her medicine in a glass of sherry.

Sex: Female
Age at diagnosis: 80
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She won't take it! Pills are worse, she won't take, she's never, never liked taking pills in her life, I'm like that. Unless I know exactly what it's for and why. And the only pill she ever used to take were her blood pressure pills because she knew if she didn't take them she could probably - 'Oh blood pressure, we were talking about that earlier' - she knew if she didn't take them she could have another stroke so that's one thing.

But now she's forgotten what they are but when you think about it we are taught from childhood aren't we not to take pills and certainly not to take them from strangers. So it shouldn't actually surprise anybody you know in the way it always seems to, it shouldn't surprise anyone that she won't take her medication. And so she's better at liquid so wherever possible, it's not the psycho-geriatric specialist himself but he's got sort of like a registrar who visits mum on a regular basis now and she and the doctor and I have talked about it and wherever possible, they've actually she changed the anti-depressant to another one that's very similar because she can have it in liquid. 

So wherever possible they give her medication in liquid form and they give it to her in a little glass and we pretend it's sherry and I have a little glass and we'll go 'Cheers,' but they can't make her take it because it's not a nursing home so she doesn't take it. Sometimes I've been in and the glass is there and, as I say when, when she could cope with the phone they used to phone me if she wouldn't take it and I would talk her through it. But they can't do that now because she doesn't understand what the phone is.

But I have just been asked to write a letter and apparently the doctor is going to write one as well to say, give permission for her medication to be mixed in with her food. Which I've done because I know she needs it and I've put in the letter 'For her prescribed medication to be put in her food.' They didn't, they didn't ask me to put that but I'm afraid I've put it because I don't want anybody thinking 'Oh we'll slip something in because she's being a bit..'. So I've given permission for everything she's prescribed to be given in her food and I thinks it's just the Tamoxifen that has to be a pill; I'm not sure what they do with that perhaps they just crush it, I don't, I don't know. So yes it's an on-going problem the medication, a real problem.

One carer described the efforts she has made to avoid using subterfuge in order to get her husband to accept medication, while admitting that when left to his own devices there was no way of being sure that he was taking the prescribed medicine.

 

Describes the problems arising from allowing her husband to manage his own medication.

Describes the problems arising from allowing her husband to manage his own medication.

Age at interview: 61
Sex: Female
Age at diagnosis: 70
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At one time if I'd put tablets out for him he would take them. More recently, perhaps this year, he has played with his tablets and he will pop them in a spoonful of pudding or mashed potato or put them in a sausage or something. And unless I was actually with him and got him to take them I couldn't be sure that he'd had them.  

On one occasion, I mean this wasn't prescribed medication, it was cod liver oil, he actually opened up the capsule and drank it and then complained because it tasted fishy, it was quite horrible. And another, another time I found a tablet dissolving in the bottom of a yoghurt or something like that because he doesn't seem to take them unless I'm actually there and supervise, he doesn't always take them as tablets. And he's having increasing problems actually swallowing tablets. He was put on Brufen a little while back because he had a really bad knee, he had sort of arthritis in his knee and it was playing up and he was taken Brufen which has a sugar coating and should be swallowed straight down but he was trying to crunch it which wasn't really the idea.

And the same with the iron tablets. Again you're supposed to swallow them whole because apparently they're designed to dissolve in a part of the gut where it's most beneficial. But he would sort of crunch it up or he would put tablets in his sandwiches because he just didn't seem to understand the importance of it and I would get the instructions 'To be taken with water;' 'To be taken with food.' He'd just look at it, it didn't mean anything to him, seeing it written down. He didn't actually fight about having to take medication but the actual method was not perhaps what it said on the instructions. But I did try to make sure that he had it at the right time and in the proper method.  

That's a very recent, very recent thing. Until possibly three months ago he was taking tablets with a drink and without any problems. But as I say, you don't chew cod liver oil and complain that it tastes fishy.

In general, do you have any thoughts about surreptitious medication?

What are we talking about here major 'tranqs' or?

Do you make a distinction?

Difficult one. I think if somebody is a danger to themselves or other people perhaps there is a case I mean if you tried all the possible avenues of discussion and persuasion and involving anybody who might have some influence, some positive influence on the person and they're still saying 'no.' I think if they are a danger to themselves or other people possibly yes there would be a case for it but it would have to be the very, very last resort. I don't know. Maybe if it prevents some even worse form of treatment there might be a case for it. I'd be very uncomfortable with it though. I certainly wouldn't want to think that anybody did it without my knowledge, I would have to be very involved in the decision for my husband and for myself obviously. I just hope I'm never faced with that. 

I think I might have joked about putting  tablets in a spoons full of jam. I don't think I've ever done it. A difficult one but I think you know in absolute extremes maybe there is a case for it. But I certainly wouldn't want anyone to be given medication just for the sake of keeping them quiet and making their lives easier. The same with catheterisation, if you can't be bothered to toilet with patience you shouldn't be looking after them.

Last reviewed February 2020.

Last updated March 2015.

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