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Carers of people with dementia

Relieving symptoms of dementia

Of the many symptoms arising in people with dementia or Alzheimer's disease, the ones most commonly treated by medication are anxiety, restlessness and aggression. All these symptoms can be distressing and frightening for the person with dementia and for their carer.

Sometimes a carer will have read or been told that it should be possible to control symptoms without using drugs, but this may not take into consideration the desperation felt by carers unable to find a way of managing difficult behaviour.

NICE guideline NG97 June 2018 suggests that before starting treatment for distress in people living with dementia “a structured assessment is made to:

  • explore possible reasons for their distress and
  • check for and address clinical or environmental causes (for example pain, delirium or inappropriate care).

Many carers are sure that without some kind of medication it would be impossible for them to carry on and suggest, probably rightly, that the people who believe they should manage without medication have not experienced the day-in day-out stresses of caring for a person with dementia.

 

Describes how she came to accept that her partner needed some sedation.

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Age at interview: 62
Sex: Female
Age at diagnosis: 61
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So in the end I took him off the lot and we thought we'd see how he went. Well, he never sat down - basically. He just went round and round and round and round. He'd come home, he wouldn't even sit down for his meals at the care centre, at the day centre. I made him sit down because I've got a lap tray so I put his, I do now put his meal on his lap and virtually pin him down.

But the rest of the evening it was just round and round and up the stairs and out the house and round this little circuit until it was driving me mad. And then I thought well calm down, what's the worse thing about it. The worse thing about it is it's irritating. Take that away and just let him go. Now we've had to change psychiatrist and CPN because now he's under county for his care plan, protocol said that we can't access the psychiatrist or the CPN. So I've got a new psychiatrist and a new CPN. 

The psychiatrist when I went to see him said to me. 'Well now look at it like this' he said 'perhaps [name] would like to be able to sit down and rest, but can't because this is obsessional and he actually can't make himself sit down. But he's, it's wearing him out. So look at it like that and maybe it might be a good idea to medicate him.' So that's and I thought about that afterwards and I thought yes, you're probably right, you know he just cannot sit down. Now if he's absolutely worn out and he's still got this compulsion to walk it must be terrible for him.

So I started to alter my thinking on it and the other things I'd thought when I'd read these articles from the Alzheimer's magazine I thought I wonder if the people who write some of these things have actually had experience of living with somebody with some of these problems that dementia brings and know just how stressful it can be having somebody doing something time after time after time after time until you're nearly screaming at them to stop. And it's not doing you any good and it's not doing them any good, so maybe the medication needs to be a halfway house.

So I've got over my ethical dilemma of this business of medication because I think there is a time and a place for it. In my circumstance it may, you may say or people may think well it's for the benefit of the carer, well it may be for the benefit of the carer, but I mean lets face it you've got to look after the carer, because if the carer goes to the wall so does the person who's got dementia. But if you're also thinking of it in terms of the best, for the betterment of the sufferer then I think there is a place for it definitely as long as you're careful with it.

Some of the medications used tend to have a sedative effect and the carer needs to balance the need to control the symptoms and the risk of turning someone into a 'zombie'. Many carers expressed a fear that, by sedating their loved one, they are losing their last chance of contact with the person they used to know.

 

Carer recognises that her mother needs medication to relieve her anxiety but is unhappy that it...

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Sex: Female
Age at diagnosis: 80
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If you can deal with the behaviour without the medication and you, have got experienced expert carers and nurses who are able to deal with it without the medication obviously that's better. But there comes a point at which they do need medication and my mother is on medication and 'I think it is right that she is on medication. 

I then think that, what doesn't always happen is the medication is not always monitored enough and I think as with my mother's case and I am sure is the case with a lot of other people in a lot of homes the medication is used more than is necessary for the convenience of staff because it keeps people docile and it keeps them sleeping in the chair.

And I realise my mother needed medication because she was distressed all the time and anxious and worried and she, so she needed something just to take that edge off. And when I saw her sleeping, sleeping, sleeping, and very confused and I thought 'how much of this is Alzheimer's and how much is the medication?'

So I actually went to see her doctor. She is so lucky she has got this lovely young girl - I say young girl; she's probably in her 30s! - doctor, who is really nice and very thorough and very keen that we work together. And I hope I'm not a threat because we, are nice to each other. 

And I actually made an appointment at the surgery and I went to say that, 'I just want your advice but I'm not sure, I just wondered, I don't know about these things, but I'm wondering if my mother is very heavily sedated and whether there was any mileage, whether they could lift the sedation and if that made her too agitated whether there was some sort of anti-depressant because I know anti- depressants can work in a different way, they make you easier about life.

She said 'Oh I see what you're saying. I don't actually know but I'll phone the psycho-geriatric specialist and have a chat.' And the message came back that he thought it was worth a try and so that's what they've tried and they've lessened the tranquillisers, given her an anti-depressant as well and it may change tomorrow, you know, gradually it may change but at the moment my mother has got back a better quality of life and she's not. 

So she's talking, she doesn't talk sense but she's got the energy to talk. She'll laugh and when somebody will come up to her and say 'Hello' and she'll smile and if they say something that's a bit risqué she'll go 'Oh I don't know.' And that's how she used to in the old days, so she's got back a little bit of her self by the right balance of medication.

So I think if it's at all possible you don't use medication at all and obviously the professionals know better than I, when the medication should be brought in but I think there's a danger of it being used unwisely, indiscriminately if you like. And I think it's a shame that it can't be used more wisely that there aren't, well I think it's like education isn't it, health and education are under funded and under-resourced and undermanned. And in an ideal world if there were sufficient people looked after a limited number of patients then that sort of thing could be carried out. And I know in this hospice in [town] that's what happens.

I don't think it would have happened to my mother if I hadn't been there actually, I think she'd be, have a less better quality of life. Yes, there comes a point at which medication is definitely needed because she couldn't, it would have been cruel to let her live a life of anxiety all the time and she was pacing and worrying and eaten up with anxiety so she needed somet

 

Carer felt that when her husband was in hospital for two weeks he was over sedated.

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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My husband used to go into hospital for two weeks respite care every two months or so. And I took him, a man who could walk a couple of miles around the village, no problem, every day, and I went to collect a man who was in a wheelchair, couldn't stand, he was zonked out. And for the first time ever I challenged medical authority and that is so difficult to do, because I've always assumed up to that point the medics knew what they were about, but they had introduced so many drugs to [my husband], that he was completely and utterly zonked out, he couldn't even stand.

He was able to go to the loo, but they'd put him in incontinence pads and so I asked that he be taken off every drug that had been introduced in that fortnight. He had to stay longer in the hospital until he was fit to come home. And what had happened of course is that they'd found his behaviour rather difficult to handle and so they had run to the medicine bottle. And I think over-medication as a form of restraint is a national scandal and we carers should not be afraid to make waves when it happens.

Many carers discovered for themselves or through their medical advisor a system whereby they tailored the use of sedative medicines according to the immediate situation and the time of day.

 
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Describes how he tailors his wife's sedation according to her condition at the time.

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I think the issue was when we decided to add, or the consultant decided to add to the Reminyl and the sleeping tablet and the anti-depressant, decided to add to that a tranquilliser. To try to deal with this issue of agitation and anger in the early evening resulting in her wanting to storm off and so on and so forth, and it was suggested that we added the tranquilliser, Diazepam.

When I read about the side effects of such a drug I mean I was extremely concerned indeed, you know. It looked as if there was a possibility that you could be even more confused than you were, that people kind of you know became almost zombie-like and so on and very, very passive and I really was worried about that and that was why I sought help on that.

There was an actual clear division between our GP who said 'Give it when you sense that something is about to happen, when you sense in the early evening that she's boiling up for a period of agitation and possibly wanting to wander off, try and sense when that moment is and give it her.' and the psychiatric nursing team who had a quite different view. And their view is that the side effects of tranquillisers may not be as powerful with dementia patients as they are with ordinary patients and they may not become addicted in quite the same way and actually what you should be doing is giving them on a regular basis when they're much more effective. 

So you're giving them say in the early afternoon when they've had time to get into the system and are much more efficient, rather than giving it as a sort of panic measure and I was quite taken with that. So that's what I try to do, not worrying too much about the side effects. 

I have to say I'm still worried about the side effects and I'm actually caught between those two models of how you give a tranquilliser to a dementia patient and I still haven't resolved it. So it's that kind of issue. Another issue would be exactly when do I give her, her evening dose which is now the Reminyl plus the anti-depressant. If I wait till just before she goes to bed that often results in anger. She sometimes throws the tablets across the room; she won't have that so it's choosing a moment during the evening when she's at her most receptive. It's issues like that but particularly the role of the tranquilliser in dementia which I think is quite a difficult thing to get right and I haven't got it right yet. 

In some cases, people in the early stages of dementia were mistakenly thought to be suffering from depression and were given antidepressants which sometimes made things worse. Antidepressants are however sometimes used for people with established dementia, as a co-existing depression is quite common. Antipsychotics drugs are a group of medications that are also occasionally prescribed for behavioural (aggression) and psychological symptoms in dementia. Antipsychotic drugs carry an increased risks and side effects, so are used very cautiously to help with behavioural and psychological symptoms in dementia. 

Possible side effects of antipsychotics include:

  • sedation (drowsiness)
  • parkinsonism (shaking and unsteadiness)
  • increased risk of infections
  • increased risk of falls
  • increased risk of blood clots
  • increased risk of ankle swelling
  • increased risk of stroke
  • worsening of other symptoms of dementia
  • increased risk of death.

When antipsychotic medication is indicated, the doctor will weigh up the pros and cons of the prescription with the patient, carers and others concerned before making a decision. If antipsychotics are prescribed, the patient should be closely monitored and the medication stopped as soon as clinically indicated.  

Many carers mentioned music as a source of pleasure and as a calming influence. While it may not actually do away with the need to use medication it can bring relief both to the carer and to the person with dementia. Other forms of non- drug treatment such as reminiscence therapy, social interaction, aromatherapy, talking therapies, animal therapy, dance therapy and massage are also suggested by the Alzheimer’s Society and NICE as alternatives and should be used before medication is prescribed.

Last reviewed February 2020.

Last updated February 2020.

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