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Carers of people with dementia

Strategies to cope with dementia - some suggestions from carers

Some carers suggested, from their experience, strategies for dealing with some of the distressing disturbances of behaviour commonly occurring in people with dementia. Many strategies are dealt with elsewhere in this website but a few more are included here.

One of the earliest forms of behaviour to draw attention to loss of memory is the tendency to ask the same question repeatedly, every few minutes. The question itself can be perfectly appropriate for the circumstances; it is just that the answer seems to get lost. While carers didn't actually offer any way of dealing with this behaviour, which can cause intense irritation to the person on the receiving end of the questions, there were suggestions as to how to be able to carry on a conversation with someone who has memory problems.

People with dementia, faced by a visitor who seems lost for words, may remember that there is some sort of social obligation to make conversation. A solution is for the carer, or visitor as the case may be, to help out by taking the lead. Several carers described developing a memory book or box of objects which would help to recall past experiences and using these to make conversation.

 

Creating a life book.

Creating a life book.

Sex: Male
Age at diagnosis: 65
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We did some things together which were helpful, you develop strategies to try and offset when they're upset or confused and I found that somebody recommended to me early on making a life book with her pictures, so I got a photo album and we sorted  out the photos. And of course her long-term memory is pretty good so she knows what pictures are where and you can sort of develop a chronological photo album and write underneath. And referring back to that is often a good way of calming, I found it a good way of calming mum down, she enjoyed looking through the photos and telling me about them.

Another carer described how she would introduce clues into her conversation with people they met to save her husband from having to struggle to remember who they were.

 

Finding ways of including her husband in conversations.

Finding ways of including her husband in conversations.

Age at interview: 61
Sex: Female
Age at diagnosis: 70
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Perhaps if we bumped into people I would sort of, yes or it's like when you first introduce people he'd say something like 'Oh hello [name]' and then perhaps say to her or say to them together' 'Oh you did all those rambles together didn't you,' and my husband would say 'Yes' but he obviously didn't remember, so yes I mean things like that I would try and draw something which connected them together. But nothing as sort of formal as sort of, I don't know, it was done on a very sort of casual basis. I'm trying to think.

Possibly I've said things, I mean when my husband's, people have been a bit baffled by the response they're getting I might have said to them afterwards 'You do realise my husband's got a memory problem?' He said, 'I'm beginning to,' this sort of thing. Yes I try to find some common ground, if I'm having a conversation with somebody, perhaps if my husband's obviously forgotten I'll bring him in as well. I'm just trying to think of a particular one.

I bumped into someone, we were just walking across [place], not that long ago and I bumped into somebody we'd met on theatre trips. And I sort of said to my husband 'Oh we haven't seen [name] since we went to [town] have we?' and he said 'Oh no.' but he knew anyway what the situation was and he was very good, including my husband.

I mean people do, when they're aware, I think they, other people will go out of their way to try and find common ground or just sort of tune in to what's going on. What I do not like standing with one or two other people and my husband and excluding him. I mean that's just, that just isn't on. If he's there he's there and he's included. But I don't know if I've ever made a conscious effort. It's just the way things are really.

Later, a new problem arises when the person with dementia denies having ever known certain bits of information and can get really angry when confronted with their failure to remember. In a normal situation it would not be unreasonable to correct someone who made such disconcerting statements as, for instance, that they are not the daughter they claim to be because such a person never existed or that it is necessary to return to a home which they last lived in 50 or more years ago. The wise carer learns to accept that it would be futile to argue.

 

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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I'll give you an example. My father came from a family of five and one of his sister's had died at a fairly ripe old age and we were sitting actually where I'm sitting now one Sunday afternoon talking and I mentioned in passing the death of his sister and he got very agitated about this because no one had told him. 

Now I knew he'd been told because I had told him, but I had learnt partly as a result of the processes that he'd been through, the thing you don't do is confront. You don't say to somebody 'Of course you know, I told you.' The rational mind in the patient is saying to him 'I would not have forgotten if I had been told my sister had died.'

And you can very easily put yourself into a conflict situation in which you are to him - or her - appearing to be completely irrational, aggressive and unreasonable for no cause because you are telling him that something's happened that he knows very well hasn't happened because it's not the sort of thing he would forget.

One carer described his feelings about actually seeming to go along with a person's delusions. He felt that it was the right thing to do because it avoided distressing conflict but he also admitted feeling uncomfortable that he was colluding with his mother's delusions.

 

Realised that colluding with her mothers delusions was better than trying to correct her.

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Realised that colluding with her mothers delusions was better than trying to correct her.

Age at interview: 45
Sex: Female
Age at diagnosis: 77
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Well some people might think that's deceitful but from what I've seen and the way that my mother has improved, and I mean there has been a big pick up in the last 6 months. Let me think, how long has she been attending [name of voluntary agency] meetings? Maybe not that long, let's say 4 months, 4 or 5 months. And certainly my mother's live in nurse/ you know, the paid nurse that lives with her notices whenever she comes back from [name of voluntary agency] meetings she's really buzzy and she's really confident and she's really relaxed. 

So clearly the [name of voluntary agency] approach seems to work and certainly we find in doing a sort of mini-[name of voluntary agency] in the home of letting her lead, taking on her reality, not saying 'No, no he died' or taking on their reality as you absolutely say, that's the thing, yes, you do collude. You, you sort of feel 'Am I entering into a kind of pact with some kind of madness here?' You know 'Am I colluding and is it all going to end in tears this collusion?' There's a slight worry there, you know, if I should say 'Oh yes she's coming in a minute' as you say or whatever, so when that person doesn't turn up is it all going to end up in tears. 

But it usually doesn't actually, which is strange. But it is rather strange for the carers that because you are entering into a slightly fuzzy world and it does sort of slightly maybe on a level make your brain feel a bit funny. But I still feel it seems a very effective approach.

I mean we very much look to their guidance down at [name of voluntary agency], very much so.

One carer described her concern when care staff objected to her husband's desire to touch them having realised herself that, since he could no longer speak, physical contact was his only means of communicating. She felt that care staff in nursing homes should understand this and not be afraid of it. Her husband was actually excluded from a day-care centre because the staff did not think it right to have to help him to aim his urine towards the lavatory bowl.

 

Care staff should not be afraid to touch people with dementia or be touched by them.

Care staff should not be afraid to touch people with dementia or be touched by them.

Age at interview: 62
Sex: Female
Age at diagnosis: 50
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Yes, sometimes it's so easy to misconstrue a person's behaviour. Again this occurred during the respite period in the hospital, and I had a phone call to say 'Would I please go to a ward meeting the next day.' To which there was the consultant, some junior doctors, the ward manager, my CPN, there was quite a gathering of people, and the bone of contention was that in their view my husband was 'touching up' the young female staff.

I said 'Well you know, could you tell me more?' And they said 'Well he, when they're getting him ready, washing and dressing him, he touches their faces or he touches their shirt.'  Well I think at this point I had to pick myself of the ceiling and say 'Well, look, my husband has no coherent speech, if he wants to say “Thank you for cleaning me up” or “That's a pretty colour you're wearing today”, how else can he do it except by touching?' And I felt really insulted on behalf of my husband if he was somehow being labelled a dirty old man, when in fact his problem was that he couldn't make himself understood except by touching, which was promptly misunderstood.

And I do think that the best way of communicating with people in the middle to late phases of dementia is through touch, through holding their hand, through smiling, to convey information in ways other than words which they understand and to which they can respond, if they wish to. Obviously some people don't want to be touched, I understand that, but I think the care staff at least should give the person with dementia the benefit of the doubt if they want to be touched. And if they want to touch them then that is a human act of kindness and has no sexual or other meaning to it. Mostly!

Another form of behaviour likely to upset the carer is the stubborn refusal to co-operate in quite ordinary tasks, eating, undressing and so on. One carer advised waiting and making the request again later when the original disagreement will have been forgotten. Someone else suggested that when he examined his motives for trying to persuade his mother to do something he was able to see that he should avoid putting pressure on her when the object to be achieved was not really important. This advice also applied to times when she would become anxious and agitated.

 

Don't try to force someone to accept things. If you wait and try later you may have better success.

Don't try to force someone to accept things. If you wait and try later you may have better success.

Sex: Female
Age at diagnosis: 80
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And another thing is the joy, one of the conveniences of Alzheimer's is if you say 'Would you like a drink?' and she'll say 'No I don't want to take it,' and you'll put it down. You can actually say it as if you're saying it afresh a couple of minutes later. Sadly the carers at the home where mum, don't all realise that, they'll go on reasoning. 'You must take this because it's going to make you better,' and she's lost it, she's lost her powers of reason now so it's better to just put it down again and say, talk about something else or sit there for a bit longer. 

And 'Oh would you like a drink?' 'Oh thank you.' And she might take a sip and say 'Oh I don't like that very much.' 'Oh well put it down and have it later you know.' And if you've got the time, but I appreciate the carers haven't got the time, they've got seventeen others to look after. I'm there for up to three hours and I've got the time to sit there and do something useful. But yes it is a problem.

 

Backing away from conflict as a way of resolving it.

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Backing away from conflict as a way of resolving it.

Sex: Male
Age at diagnosis: 65
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If you're going to be locked into an argument or a discussion about something that just seems to be going around in circles. Finding something else to do or something else to talk about. Often something physical like making a cup of tea or go and sit in the garden or popping out for a trip or something can help.  

When she was very upset I often found that it was sometimes better to leave her alone for a bit. Often people you know need their privacy sometimes especially if they're upset. I found the photo album quite helpful at distracting her when she was very upset. And sometimes it's best to, often I used to recognise in myself and in fact I was getting into these repetitive arguments because I was suddenly trying to force a point or make her do something that I wanted but she didn't. 

So in fact if you just let that go and don't get worked up yourself, that's why I say you have to learn to be patient. You've got to recognise in yourself the times when you're getting a bit frayed and sick of it and you just need to let it go and move on to something else and then go back to it later or stop trying to reason and justify something which you can't with somebody who's not going to accept it, just go ahead and do it.

Many people living with relatives who are in the early stages of dementia have to decide whether it's safe to let them go out on their own. They were able, for a time at least, to take the risk rather than have to enforce some sort of restraint, by being sure that they carried detailed information which could be used if they got into difficulties (See 'Wandering').

One carer described her attempts to restrain her husband who displayed a restless agitation for days at a time. Her intention was to find a way to avoid the use of medication. She describes having to pin him down to get him to eat and the way she has tried to negotiate a strategy to allow him to relax at least some of the time. (See 'Treatment for dementia').

 

Looking for a way to control her partner's agitation without turning him into a zombie.

Looking for a way to control her partner's agitation without turning him into a zombie.

Age at interview: 62
Sex: Female
Age at diagnosis: 61
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I didn't want him to be a zombie but at the same time I wanted to try and manage it. 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.

Last reviewed February 2020.

Last updated March 2015.

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