Carers of people with dementia

Living with change

In the early stages of dementia, the carer may hardly be aware of the changes that are taking place. In some cases they may adapt to the changes without really taking account of them. When they look back they may recognise that there has been a change in their relative roles, between husband and wife, or between parent and child.

Several male carers described noticing how their wives had begun to opt out of domestic activities. Even after a diagnosis had been given, the transfer of responsibilities was not always straightforward and had to be negotiated with tact. This carer also described how he had to find a way to persuade his wife to let him look after to her physical needs.

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A daughter described her feelings when she realised that she was having to make decisions for her mother in a way that her mother would have done for her, as a child.

A wife whose husband had liked being the one in control of things, throughout their long marriage, now found she had to take charge of things. She described how she had to introduce these changes carefully as her husband would have found them humiliating prior to his illness. Another woman was a in second marriage that had meant new perspectives and hopes but the onset of dementia had created a situation which changed their relative roles in a way which she knew her husband would have hated.

In the early stages of dementia, before the diagnosis has been made, the carer may be bewildered by the changes they observe. It can be very distressing when a much loved person seems have lost the good qualities which had formerly been seen as an essential part of their character. One woman who had met her husband in later suspected that the changes in her husband were revealing aspects of his character that she had ignored when they married. She found a new way of relating to him after he started to spend time away in residential care.

Being able to recognise the carer and other family members was often seen as proof that all was not lost. But once that was gone and the person was no longer living at home one carer, at least, admitted to doubts about his status as a husband. He wondered whether it was appropriate for him to consider himself tied to a wife who didn't even recognise his existence and whether he should move on. His daughter thought that it was inappropriate for him to start a relationship with another woman and this caused tension between them.

Severe dementia can change someone from the familiar and loved partner of a lifetime to someone who is barely recognisable as the same person. People reported getting perplexing glimpses of the person they used to know in fragments of speech or characteristic gestures. One carer was able to draw comfort from her belief that her mother's soul remained intact in spite of her almost unrecognisable outward demeanour. Others were unable to look at things in this way, although it might have made the situation more bearable.

Last reviewed March 2015.

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