Carers of people with dementia

Becoming a resident

Once the care home has been chosen, a place agreed and the funding arranged the carer has the task of persuading the person with dementia to agree to the move. This is likely to be difficult and sometimes not actually possible. Various strategies were described by carers. Probably the most satisfactory circumstance was when the home was already familiar, having been used previously for respite care or day care.

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One carer who had already moved some of her mother's furniture into her new room describes how she and her sister managed the actual transfer. Several carers admitted that they hadn't felt it appropriate to give any warning of what they were about to do, arguing that there was no point giving an explanation which might cause distress but which would anyway be forgotten. Just a few carers said that the only way of making the move to residential care was for their relative to be first admitted under the Mental Health Act.

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Leaving a relative in a strange place was a painful experience for most carers. There were differences in the advice given and the course taken about contact between the carer and their relative in the early period after admission. Some carers visited daily, took part in the home's activities and helped with caring of their loved one. Others had been encouraged to allow some time for settling in. One woman who had young children and whose husband's dementia was progressing so rapidly that she was quite unable to continue to look after him at home, was persuaded not to visit him for a month, which she later regretted.

Another carer on the other hand felt that it had been the right decision not to warn his mother of her imminent move and not to visit her too often as this allowed her to establish relationships with other residents. Several carers described how their relative didn't seem aware of the significance of the move in some cases confusing the home with their previous place of work. One carer gave advice on how staff could make use of this confusion.

For many carers, the guilt associated with handing over care was never fully relieved; particularly when their relative begged to be brought home even after a year. One carer admitted that he felt bereft of his role as carer and dealt with this by continuing to visit his partner several times a week. Another carer who reluctantly allowed her husband to be admitted to residential care describes how she was able to take him back home for his last months and give him the care she had been unable to manage earlier. 

Many carers felt very strongly that they should still be the most important decision maker and insisted that the staff of the home involved them whenever changes had to be made in management or treatment. They also often felt that they were still the person most able to cajole their relative into doing things the carers in the residential home might have decided were impossible. (See 'Strategies - some suggestions from carers'). For some carers the move to residential care of their husband or wife was experienced as a painful separation. One elderly carer admitted how lonely he now felt at home, without the coming and going of carers which had filled their days before his wife went into residential care. Another would wake in the night worrying that his wife might be uncomfortable in some way and that she would be unable to make her needs understood.

The amount to which carers continue to visit depends on many factors. It may not always be possible to find a suitable residential home which is near enough for frequent visits. The carers themselves may have other commitments which make visiting difficult. But there seemed to be a feeling that however good the staff at the home it was important that they realised that a family member was watching out for the welfare of their relative.

Many carers visited with devoted regularity, even when the person they were visiting had ceased to recognise them and was no longer aware of how long it had been since their last visit. Some carers admitted that they found the time spent visiting was much more satisfactory than time spent together previously at home when they were overwhelmed by having to do all the caring. One carer described how important it was to her to continue to celebrate birthdays and other anniversaries even though her husband didn't really understand what was going on.

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Last reviewed March 2015.

Last updated March 2015.

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