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Carers of people with dementia

Wandering

One of the earliest symptoms of dementia can be the experience of bewilderment in the middle of a journey or just a walk away from home. This may be the result of the failure to recognise what would previously have been familiar landmarks and a growing confusion about what's going on in the world around them. Or it may be that the reason for setting out in the first place has been forgotten. Two sisters were caring for their mother who was still insisting on her independence and they described how she went missing while returning from a trip to Australia and was found having pitched up in Athens where her plane had stopped to re-fuel.

 

Wonders if the desire to escape was an attempt to overcome the confusion in her mind.

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Age at interview: 78
Sex: Male
Age at diagnosis: 76
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And Iris, poor Iris would spend very often a long time rattling the door or looking at it you know in a rather monkey like manner wondering 'How can I overcome this particular problem,' you know. And I mean the desire to escape, to get away is very touching, it was almost as if she wanted, she thought 'If I can only get out I'll get away from,' that was the only sign that she really had, that she was in, in a state of affliction about the way things were  I think normally she didn't have that but when the urge to escape came over her it was very marked.

 
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Their mother got lost on the way back from Australia.

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Sex: Female
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Mum had got off the plane, she'd got on a bus, she'd jumped off the bus for some reason as far as we can gather because she didn't go to the place where the bus was taking her. I think the bus was just taking people for, taking people to some rest stop before the flight continued, but she was obviously totally confused, had no idea where she was and had jumped off the bus. And was eventually found, I don't know how she got there, she was found on, in a police station in Athens and she was, she refused to move, literally refused to move.

I don't this the Vice Consul, anybody could get her to move so they had to keep the police station open all night and she, mum was sitting there, they couldn't get her to go to a hotel or anything. Because she, she was obviously frightened, poor mum, I mean she was, and she just felt, she was just going to stay where she was because if she went anywhere else, I think she was just, she was just scared.

And, the Vice Consul, she was of course, she'd come from Australia and this was December and she was in summer clothes and the Vice Consul took her out and bought her a coat, which was very sweet of them. And then got hold of us and my sister flew out the next day, where she was still, I think she was still in the police station, and mum, mum just said 'Oh, I thought [my sister] was coming.' That's me! So my poor sister after you know all this effort, money and trauma of rushing out to Athens…

That was her response, and my sister was so good, and she took her to a hotel and then she brought her home and mum was quite, even when she got back to England mum just wanted to get on a train on her own. And so she actually took herself, I think she took herself back to Bristol because she was still in this terribly independent mood. Anyway she got home.

And we had all sorts of problems after that trying to get her luggage and so on, but, but the whole episode, she remembered it partially but she thought she'd been in a Nazi concentration camp! She'd obviously been scared, she really had been scared. And when it came to collect, eventually we managed to collect her, find out where her possessions were but only three months later and they sent them to Bristol airport.

As carers become increasingly concerned that the person they are caring for will be in danger as a result of wandering and getting lost, they have to decide whether they are going to have to put a stop to that person's freedom to go out alone. Some carers admitted to being surprised that so far no accidents had actually occurred.

 

Sometimes she would escape but remarkably she never came to any harm.

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Age at interview: 78
Sex: Male
Age at diagnosis: 76
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But in the daytime sometimes one can't, I, we may have been coming in from a walk or something of that sort and I forgot to re-lock the door and then I was doing something perhaps in the kitchen and I suddenly realised she'd gone. And she'd simply vanished away. And there were two or three times when I had to call the police and they went and search for her, the police advised me to stay at home. And in fact she always, on the first occasion I think she came back by herself rather remarkably. But later on either the police managed to find her or sometimes a friend who I warned that she could be walking around came, brought her back home.

I think that in some ways is the most alarming in my experience of the, and the most alarming stage of the dementia because it, one feels that there could so easily be a fatal accident. But in fact she had an uncanny way of avoiding trouble. She seemed to be able still to cross a crowded street and to know which way to look and that sort of thing as if this was a reflex which was very deeply embedded in the consciousness. And even Alzheimer's with its disturbance of the communications in the brain hadn't been able to eradicate.

The only way that most of the carers we interviewed could find to prevent wandering was to lock the door and hide the key. On the whole this was successful but carers often felt unhappy about this enforced restraint particularly to an otherwise active person who was still able to walk many miles if only they were allowed to. One carer described how she had to go with her husband to a disabled loo when they were out because if they were to go separately he could be off and away in a matter of moments. Another said that he had to lock his wife in one room when he needed to take a rest.

Several carers described how their loved one would wake up early and be ready at the door, with their cases packed, insisting that there was somewhere they should be going. Sometimes this would be a return to their childhood home or some other place from their distant memory. One carer suggested that her mother was in an almost permanent state of agitation about things she thought she ought to be doing urgently and that this explained her need to pack her bags in readiness. Another describes how, in the evenings, his wife would pack her bags ready to take off and tells how he handled this situation.

 
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Anxiety about what she might have forgotten made her mother feel there was somewhere she had to go.

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Age at interview: 53
Sex: Female
Age at diagnosis: 61
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I think I probably had this myth like a lot of other people think, once you start forgetting things it's alright because you don't remember. What I didn't know, I had no idea was the awfulness of not knowing things and not, the anxiety that went with it, just the constant trauma of not knowing what you're doing all the time and that got worse. I don't think anything prepared me for that, this terrible distress that was in her, because in the flashes that she had, she knew there was something wrong but there was this constant activity with her and it just got worse and worse. Wondering where she should be, what she should be doing, she'd forgotten to do something, she'd forgotten…and all of these things she had done, so there were times when she knew but you know, she'd go up and down stairs a hundred times you know thinking she'd left something upstairs or downstairs. And the constant feeling that she ought to be on the move and doing something else and something different than what she was doing. 

She'd get up in the night, in the earlier days; she'd pack her bags and have them packed at the door. If I went out, this is before, to pick the children up from school, she'd have her bags packed ready to go because I wasn't here so she didn't know what to do so she packed her bags ready to go in case it was the day that she was going. That anxiety I had no idea about. There'd be flashes of insight, I had no idea of that; nobody told me about that. I kind of thought it would all be some…until I started reading about it.

 

Has found a way to avoid conflict when his wife feels she has to go out.

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Sex: Male
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More recently - and this has been the major area of difficulty - she's wanted to wander. Well, she's wanted to go home. That's now something that happens three or four times a week, usually in the evening when she'll announce after a meal in the evening 'Well I'm going home, I've been here long enough, I need to get back to my parents.' So she'll pack a case and sets off. Now the way I deal with that now, it's taken a little while to do this, is that I don't try and fight against it, I certainly don't try to lock the door, although I did initially but that led to a great deal of anger and some violence, she would throw a telephone or throw something across the room and occasionally she's tried to hit me, well she has hit me but not very seriously.

What I do now is to say to her 'Well if you're going I'll take you down in the car to the town.' 'No, no…' she'll say '…you don't need to do that.' 'Go on, I will.' 'Alright then.' So we get in the car and we drive into town and then I say to her 'Well I'll tell you what, I'll walk with you a little way.' 'No you don't need to do that, I'm quite capable of walking on my own; alright well if you want to you can.' So we walk through the town and we walk for about half an hour and then after about half an hour I can tell by the way the conversation's going that she's kind of back in the real world again and I just say 'Shall we go home and have a cup of coffee or a bite to eat?' 'Yes that would be nice.' she says and we come back and we're back in the real world except that quite often ten minutes later she'll say 'Well, I'm off.' and she makes off again.

I think the worst is, we've never had it more than three times in an evening, it does get very tiring when it gets to 10 o'clock and it's pouring with rain and she still insists on going, but we go. Each time having a shorter and shorter walk and then she seems to come back.

There were many instances where a confused person went missing and would sometimes not be found for as long as 24 hours. By this time, they were often tired, cold, wet, hungry and, above all, bewildered. A woman, whose husband got lost, found herself entertaining the thought that it might be appropriate to use electronic tagging to make it easier to find him if he went off again. Electronic tagging and other technological solutions may be offered by a specialist in Social Services.

 

Getting lost was so awful, may be electronic tagging would be the solution.

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Age at interview: 62
Sex: Female
Age at diagnosis: 50
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One of the most frightening moments in my caring was one late November afternoon, it was just getting dark and starting to rain and I realised that [my husband] was missing, he was no longer in the house, I searched high and low for him, he wasn't anywhere around and then I found that he'd managed to undo a patio door and had gone out that way. And I remember going to the bottom of the drive with the light failing and the rain starting to come down and I had no idea which way he'd gone, absolutely no idea which way he'd gone. And I really wished that I'd had an electronic tagging device, that I would be able to have in my hand a piece of equipment which would say to me 'He's gone that way' and at least we'd know roughly where to start looking.

I searched in the car for about three-quarters of an hour until it was absolutely pitch black and I couldn't find him and then I got hold of my son and two or three friends in the village to go searching in their cars and we searched again for about another hour and eventually somebody said that they would try the footpaths. [Name], my son tried from one end and a friend tried from the other and they found him wet and miserable, no idea at all where he was, and with no coat on.  I was very relieved to see him but it had taken what, the best part of three hours to find him, [searching] in an ever widening circle.

And yet I suppose some people politically correctly will say it is an onslaught on a person's autonomy and privacy to be electronically tagged. All that I can say is that if you've ever been a carer and been in that situation of not knowing where to start to look, I think I would have preferred a discreet something on his sock and a quick finding rather than this wet and miserable chap we found at the end.

Most of the carers we talked to had some reason to believe tagging would not be the right solution.

 

He destroyed his radio tagging device and had an accident.

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Age at interview: 52
Sex: Female
Age at diagnosis: 46
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I managed to get him moved from there to a nursing home which was much closer to home and a much bigger place. So, although it was a nursing home for the elderly, they had to change the rules so that they could take [my husband]. But the nursing home had to get special permission.

He was much happier there for two or three months because it was a nice place for us all to visit. It was out in the country.  We put a radio-tagger on [my husband] like they use for tagging animals and use for wildlife research so that when he got lost they had a chance of finding him. And he was there, that was a much better time, he was there for about two or three months one spring.

There was one time when [my husband] managed to get lost and managed to destroy his radio transmitter and he was knocked over by a lorry. He broke his arm, it could have been a lot worse, because he got on to one of the dual carriage ways and he was walking along in the dark.

And he, he changed, he seemed to get much more aggressive after that, I presume he was very frightened. It must have been dreadful for [husband's name], he had so much courage just to keep going, keep plodding on.

Preferable to tagging was the provision of information about the person's condition and appropriate telephone contact numbers which could be placed in the person's pockets or handbag. Though, as one carer said of her still active mother, this was less useful once she started forgetting to carry her handbag with her. Another way of handling the problem was to rely on friends and neighbours and even inform local shopkeepers of the problem so that the confused person could be brought home when found wandering, and apparently lost. This strategy delayed the need for the use of more rigorous measures to stop the wondering.

Residential homes mainly used to caring for very elderly patients, who are less likely to want to escape, may have great difficulty managing to restrain a younger, active person who is determined to get out. Some people with dementia can be surprisingly ingenious getting past security locks.

 

Escaping from residential home.

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Age at interview: 61
Sex: Female
Age at diagnosis: 70
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He's just going, trying to, he's actually escaped twice, from a secure unit, which made me very concerned. The day after he moved in I was out in the morning, got back and there was a message on my answer phone, would I ring the home - excuse me - so I rang the home and they said 'Well it's OK now he's turned up but we needed to let you know that he'd gone missing.' I was so stunned I couldn't really react. I thought, the day before we'd taken him in, there were swipe cards, keypads and my grandson who'd come with me had said 'At least he won't escape from here, will he?'

I just could not believe it when they told me and what really scared me, he'd walked from the unit along a pavement and then along a country road, it must have been a good mile on a summer's Sunday morning, no pavements and turned up in the local pub. And the pub owner realised there was a problem and rang the police and the Unit had already rung the police so they put two and two together. And he'd managed to con a pint of best bitter and then realised he didn't have any money and the care home manager went to pick him up and took him back.

I say, at first I just said 'Thank goodness he's safe and fancy him finding a pub.' Because he'd never have, it was just pure luck, he'd never have got there. But then I began to think when I put the phone down - hold on he was walking along that road on a Sunday morning, no pavements, no road sense I just was absolutely devastated really.

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Last reviewed July 2018.

Last updated March 2015.

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