Understanding end of life dementia for relatives - part 1

As dementia progresses someone with a diagnosis will become less and less able to make their feelings and intentions clear.

Mary Jordan examines the difficulties families face when dealing with a relative with dementia at end of life.

Dementia is a progressive condition which hastens the end of life. It is upsetting for the person who has the diagnosis and it is painful for the family who have to watch the gradual decline of the one they love.

Many people with dementia appear to have no insight into their condition and will deny any diagnosis but where there is insight they are often able to express wishes about end of life and many in are keen to do this. Well-meaning family members should not dismiss a desire to discuss and plan for end of life and indeed it is a great kindness to help someone who is aware of their fading powers of cognition to make an end of life plan and to sign legal-medical statements if this is their wish, before it is too late.

Where the person with dementia shows no insight or perhaps even denies the diagnosis it can be counter-productive to try to force discussion about end of life issues. Dementia affects the ability to anticipate the future and the ability to undertake strategical planning and attempts to coerce someone to ‘face up to’ something they are unable to comprehend could cause dreadful distress.

If no end of life plan has been drawn up nor clear wishes stated family should be careful when acting on behalf of their loved one in making medical decisions. As dementia progresses someone with a diagnosis will become less and less able to make their feelings and intentions clear and there is a temptation to project how we think we would feel in similar circumstances. The thing is that we do not know. Often carers tell me that they personally ‘would not wish to be kept alive’ if they were in late stage dementia but they can only express how they feel now – it is possible that in that situation they might be fairly content and not want to hasten the end.

It is also important to remember that just because someone holds a Power of Attorney this does not necessarily mean they can make all health decisions. If someone has made an advance decision to refuse life-sustaining treatment and later granted Lasting Power of Attorney (health and welfare) to a relative or friend then the advance decision is made invalid by this act and the attorney can decide on this matter. However if someone who has given Power of Attorney to another later makes an advance decision to refuse life sustaining treatment then their wishes over-rule the POA.

As a general rule people with a dementia diagnosis do not die from the disease causing the dementia but usually of some other direct cause – for example they might contract a chest infection which does not respond to antibiotics or they may fall and break a hip and be unable to recuperate. (It is not unreasonable to regard such an event – at least in retrospect – as a blessing since end stage dementia is traumatic both for the sufferer and any relatives).

For this reason family may find that they are facing the death of their loved one before they anticipated doing so. Doctors may ask the family about any advance statement or any expressed wishes made by the person with dementia in connection with resuscitation but this does not always happen and in these circumstances death may come very suddenly and there may be no time to manage to ‘say goodbye’. This can leave family feeling shocked as well as bereft and often overcome with guilt, especially if dementia was so advanced that the person dying was unable to comprehend what was happening to them.

In the second article on this subject, next month, we will discuss end of life at end stage dementia.

Mary Jordan


Co-author of: End of Life, the Essential Guide to Caring (Hammersmith Press) and The essential Guide to Life After Bereavement (JKP)

Tags: Dementia Lasting power of attorney end of life carer end stage dementia Power of Attorney advance statement

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