Carers of people with dementia

Day care and respite

Respite is any provision which allows the carer to have a break from what is otherwise a 24 hour per day responsibility. In the early stages of Alzheimer's, or one of the other dementias, the carer may try to manage without outside help, particularly if, as is often the case, the person who is beginning to suffer from dementia is resistant to accepting help. But sooner or later the carer will realise that he or she must find a way to have some time for himself, even if it is only to do the shopping.

For some this may be help from a friend or relative who comes to offer companionship or to hold the fort while the principal carer has a much needed break. (See 'Friends and family'). But in many cases such help is not available and arrangements have to be made either for carers who will come into the home or for attendance at a day centre or for short periods spent away from home. Here we deal with carers' experiences of day centres and residential respite care.

Many carers have a problem persuading the person with dementia to agree to attend a day centre. They may feel extremely anxious about being exposed to new people. Sometimes they may be indignant about the kind of people they find there. If they are living alone there may be a problem if they don't remember which day or at what time they are going to be picked up though this problem is greatly lessened by the wonderful job done by the drivers who provide transport to and from day centres.

Most of the carers' accounts of day care however describe advantages both to themselves and to their relative. One carer felt that the activities she had been involved in at her day centre had played an important part in slowing down the progress of his wife's dementia. Some carers, particularly elderly partners would stay there much of the time, taking meals, making friends and sharing experiences with other carers. Sometimes a carer noticed with surprise that someone with dementia could be more relaxed about being with strangers than they had been when they were well.

In some cases, there may be a problem finding a day care centre that is suitable and able to offer a place. This can be particularly difficult for people with agitated or aggressive behaviour, and although their carers probably need relief more than anyone it may be very hard to find a suitable place. One carer who suffered, because several day centres were unable to cope with her husband, describes the difficulties in handling him which she felt the staff in the day centre should have been trained to manage.

In contrast to this another carer had the good fortune to find a centre where the relaxed atmosphere and the skilled care exactly suited her husband's needs. She and other carers shared a serious concern that recently there were signs that invaluable facilities were being threatened with closure.

Day care is not free and one carer found when she measured the cost of the freedom it bought against what she earned at work it barely covered it.

Like day care, residential respite care has many advantages but there can also be disadvantages. For an active man who was so difficult to contain in day care, spending time in respite care resulted in a dramatic deterioration as a result of the heavy sedation which the respite carers believed was the only way to keep him from absconding or becoming unmanageable. Understandably this was very distressing for his carer who had to spend the next few weeks getting him back to the level he had been at before he went in.

One carer describes how, because of inadequate nursing, his wife developed pressure sores on her heels so that after her return she had to be admitted to hospital. Another felt that because she was not troublesome his wife had been neglected and this was why she developed bedsores while she was having respite care.

Leaving someone for the first time in respite care can be upsetting for everyone. One carer described how he felt that by being very open with his wife about it she had learnt to accept her periods away from him as an agreeable aspect of their life together.

One arrangement that worked particularly well was when the centre which was used for day care could also offer respite so the carer and the person being cared for were familiar with what they were getting.

The amount of respite care allowed for any carer varied considerably from 4 to 13 weeks a year. Depending on the outcome of the Financial Assessment, Social Care may contribute a proportion of the cost of the respite placement. One carer who felt she had not reached the stage where she was ready to give up caring for her husband altogether was allowed 13 weeks respite and by using it carefully a little at a time she felt able to restore herself sufficiently to continue caring for the rest of the time.

Last reviewed March 2015.

Last updated March 2015.

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