Carers of people with dementia

Self-care

While it is not uncommon for many people to hang on to food beyond its best before date, often to the amusement of other people, an extreme form of this might be an early symptom of dementia. This can cause serious concern particularly where people in the early stages of dementia still live independently. Carers described confusion between ovens and refrigerators and people seeming to ignore the commonly accepted associations between foods. Help in the form of clearing out the fridge or cooking was often rejected or seen as interfering. One man who would refuse to eat what his wife offered him would scavenge outside, eating acorns and fungi.

Using Meals on Wheels to try and ensure a regular diet could was often unsuccessful as the person with dementia couldn't remember to be at home to receive them.

Another aspect of behaviour that frequently alerts people to the onset of dementia in others is their increasing neglect of their personal appearance. Carers talked about noticing that someone who always prided themselves on their appearance beginning to look scruffy and unkempt. A daughter said that she realised something was wrong when she noticed stains on the back of her mother's coat suggesting that she had not noticed that she had wet herself. She also described how her mother seemed to have stepped out of her knickers when she wet them leaving them around the house.

Carers who attempted to smarten up the person with dementia were often thwarted by a determined resistance to such interference. One daughter believed that her mother would get up very early to be sure to be dressed already by the time her carer came to help her. One man describes how his attempts to smarten his wife up were undone by her insistence that she should change back into her everyday clothes almost immediately. One husband describes how he learned to persuade his wife into letting him wash her and change her clothes.

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Another husband had felt unhappy about helping his wife with intimate aspects of going to the toilet. He came to accept it because he knew he could do it without upsetting her. He also felt upset that the incontinence advisor, who was supposed to help him, showed little respect for his wife's feelings. He suggested that incontinence was a problem which should be discussed at the time that the diagnosis of Alzheimer's was made and that husbands particularly needed specific advice on ways of dealing with it.

A less usual situation was described by a woman whose husband wanted to bath several times a day.

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Sooner or later, incontinence, at first urinary and later double incontinence, may become a problem. Several carers are convinced that this could be delayed through increased vigilance by the carer. The problem, they think, is not failing to appreciate the need to urinate rather it is due to forgetting where the lavatory is or in some cases how to use it. One carer describes how the problem began after her mother had moved in with her and was in an unfamiliar setting. One a husband remembers that his wife only ever wet the bed when he had been so tired that he failed to wake up and take her to the lavatory in the night. One daughter describes how she solved the problem for a time by persuading the carers in her mother's residential home to take her to the lavatory at regular intervals.

Once incontinence is established then carers have to find ways to cope with it which avoid distress to the person with dementia but also save the carer as far as possible from the enormous burden of keeping up with mountains of washing. One elderly man was almost forced to give up as a carer when his washing machine broke down. One daughter described her opposition to the use of a catheter for her mother who was doubly incontinent but did later did accept it when she realised that not only did it relieve her of a lot of washing but it also helped to protect her mother's skin from damage.

One woman had to buy single beds when her husband regularly wet the bed at night but still had a major problem with washing and cleaning up in spite of using large incontinence pads and 'Kylie' protective sheets at night.

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Last reviewed March 2015.

Last updated March 2015.

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