Carers of people with dementia

Arranging residential care

For most carers the decision to move their relative, either from their own home or from the carer's home, into residential care, can cause great difficulty and distress. The knowledge that this isn't what their relative would have wanted, can make it difficult and the carer may have been asked to promise it would never happen. There may be concern about the quality of care available and the belief that it could never match up to the total commitment of a carer who loves their relative and understands their needs intimately.

Many have visited residential homes and considered the residents to be in much worse shape than their relative and suspect that there will be an inevitable deterioration brought about by the move. They may feel that someone who is becoming less and less like the person they used to be as dementia progresses, will become a complete stranger when they are living in this unfamiliar place. Finally there are concerns about the cost of residential care, who is going to foot the bill and how is it all going to be arranged.

Ideally, arrangements for transfer to residential care are set in motion well before the time it is actually needed. This allows the carer to visit and assess a number of different kinds of home and make an informed choice. There may be the possibility of introducing the future resident gradually, allowing them to become familiar with the place so that the eventual transfer is less bewildering for them. One elderly carer took 6 months to find the right place for his wife. He describes the criteria he used in coming to a decision.

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Other carers stressed that it wasn't enough to visit a home by arrangement when you might find everybody on their best behaviour, you had to make unexpected visits, taking the staff off their guard to be sure of the quality of care. One carer's partner had to be sectioned (detained under the Mental Health Act) because of his aggressive behaviour. He described how he chose a home where drugs weren't used and residents were allowed to behave in ways which would not normally have been accepted.

Unfortunately, the need for residential care often arises urgently and the carers find themselves unprepared. It may be that caring single-handedly has suddenly become virtually impossible. Or the carer may feel they no longer have the emotional resources to cope with someone who is experiencing extremes of agitation and aggression as their dementia increases. Or the person with dementia who has been living independently has done something which brings home the risk of 'carrying on regardless'. One carer describes how she had started to find out about homes to be prepared for a sudden change.

The carer may accept that the quality of care and love that they can give is better when they have been relieved of the physical and mental exhaustion of full time caring. Sometimes the situation reaches a crisis where the carer is no longer able to manage, the person with dementia will not agree to going into residential care, and the only route available is to use legislation to bring about compulsory admission.

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Part of the process of arranging for residential care, that is particularly difficult in an emergency, is the planning for how the care is to be funded. Many carers complained that they had been given no information on what they might be entitled to and that the forms they were asked to fill in were unnecessarily complicated. Carers were surprised and concerned to discover that someone suffering from dementia might not be eligible for funding from NHS or social services and may have to use their own savings to fund their care. This was often upsetting for carers who felt that their parents would consider this use of their money 'a waste' and would rather their hard-earned savings were left as a legacy for others for enjoy.

In some cases where NHS funding was agreed to, it turned out to be tied to certain beds in certain residential homes so that a family might have to allow their relative to be admitted to a home that they would not have chosen if they had been in a position to pay. One carer was concerned that a home she had chosen for her mother might not be eligible for funding once her mother's own funds had been reduced to the cut-off point (£18,000 at that time) One son was paying a lot of money for residential care for both of his very elderly parents, one of whom had Alzheimer's disease. He admits that he struggled with making the decision to chose the residential home where they are staying over a cheaper option.

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Last reviewed July 2018.

Last updated March 2015.


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