Carers of people with dementia


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.

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.

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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.

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.

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

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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.

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Last reviewed July 2018.

Last updated March 2015.


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