Carers of people with dementia

End of life

At all stages in the course of dementia carers face the possibility of a time when the quality of life of the person for whom they are caring is so poor that they feel that for their loved ones to pass away would be preferable to continued deterioration. 

One carer described the mixed feelings he experienced as his wife approached the end of her life and after her death. He felt that her total helplessness was degrading for her. He no longer felt able to make any contact with her, he worried about whether the nursing staff were making efforts to persuade her to eat and he felt guilty that he was able to go out and enjoy himself. Only some time after her death was he able to think of her with affection again, without pain and guilt.

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In spite of the pain experienced by carers witnessing the progressive destruction of their loved one's personality and the perceived indignity of the dependent existence they had been reduced to, there was almost complete consensus from carers that neither euthanasia or assisted suicide were appropriate.

For some people this was seen as a 'straightforward moral decision' believing that the manner and time of death was 'a matter for God' and not something that anyone had a right to manipulate.

In many cases, however, people who were not actually opposed to euthanasia felt it was not right to consider it in the case of someone with dementia, who was unable to give their consent at the time the decision was being made.

Some carers struggled with the feeling that their loved one would have wanted to write a living will (Advanced Decision) making clear their wishes, if they had known that they'd go on to develop dementia. Knowing this they felt thwarted, both by not being able to prove to themselves or others that this was the case, but also by the knowledge that 'Living Wills/Advanced Decisions' carried limited legal weight. Advanced Decisions can be made to refuse treatment, but not to request assistance in ending life. For example, a person in the early stages of dementia may make a decision that they will not have a feeding tube inserted if they develop problems with swallowing.  

One woman, who had written evidence suggesting that her husband would have wanted to die rather than reach the state he was now in, never-the-less persuaded herself that there were still some things in his life which continued to make it worth living.

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While carers didn't feel in a position to ask for someone's life to be ended, they did feel that they had a responsibility to decide what kind of efforts should be made to prevent death. There are two main situations where the decision whether or not to intervene would increase the chances of survival or hasten death.

The first such situation is to make a decision that the person with dementia can't be made to eat or drink. In some cases this seemed to be caused by the person actually forgetting how to do it, in other cases it was seen as a struggle with what remained of what had once been a strong will. One carer described how, with patience and ingenuity, she managed to introduce some nourishment and teach her mother to eat again. More often carers would be faced with having to decide whether they were willing for their relative to be fed either by introduction of a naso-gastric tub, a PEG tube into the stomach, or intravenously. Many carers had no compunction about asking that such measures were not taken.

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The second situation is the use of active measures to treat illnesses occurring in a seriously demented person. Most carers agreed that they would be happy to accept the use of antibiotics if they would relieve suffering. However, they would oppose their use for someone who was not able to take them by mouth, where giving them might involve a struggle or use of a possibly uncomfortable IV infusion. Similarly they wanted it to be clear that they didn't expect their relative to be resuscitated in the event of their having a heart attack or a stroke.

These considerations may seem obvious and humane but some carers felt that it was not appreciated how difficult it was for them to have to make these decisions. Sometimes it was felt that there was insufficient guidance and understanding from professionals, particularly those working in hospitals. Some carers who could not accept the idea of euthanasia worried that there was an inconsistency in their having allowed the use of morphine to make their relative comfortable when they were aware that in all probability it had hastened the end of their life. They were grateful when the decision was taken out of their hands. (For more on Advanced Decisions see our section on Living with Dying).

One carer had told the staff in the nursing home where her mother was resident that, in the event of an emergency, she would much prefer for them to call a doctor than for them to call an ambulance, the implication being that to stay put and to die in peace was infinitely preferable to subjecting her to the trauma of a hospital admission.

Last reviewed March 2015.
Last updated March 2015.

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