Who are we to judge the lives that people with dementia are living? | Letters

After 35 years working with people with dementia, and having a father who has had Alzheimer’s disease for the past five years, I find it hard to be certain that I know what people with dementia are thinking and if they judge life in the same way as before they had dementia (Why do we keep people alive against their wishes?, 29 May). Their lives are certainly different from ours and what theirs once was, but are they “empty husks”? Katharine Whitehorn is no longer a journalist, mother, friend, etc, and my father is no longer a veteran, great-grandfather etc; they can no longer recall any of that, and it is distressing for us who remember them as such to see that and the loss of their ability to care for themselves, but is it equally distressing for them? What is their experience of this new reality? That is a much harder question because we can only observe from the outside.

The people I’ve seen seem to have very varying experiences of dementia. Some appear very distressed, others relatively happy, and this experience can appear to vary greatly both from person to person and from day to day for an individual, much like life does for the rest of us. I had a trip to accident and emergency with my father which covered many hours and which at the time we both found upsetting, yet later he recalled it as trip to an interesting exhibition while I recalled trauma.
Dr Chris Allen
Consultant clinical psychologist and dementia lead, Windsor, Ascot and Maidenhead, Berkshire NHS Foundation Trust

Polly Toynbee describes Katharine Whitehorn as still often recognising people, not suffering, not experiencing indignity, placid with flashes of lucidity, not dying but “not herself”. And there the philosophical problem cannot be brushed aside. For if she is “not herself” or not “the real Katharine”, then we really don’t know what wishes the woman with that name has: we only know what the person she once was wanted a long time ago (not last week) – hardly compelling grounds for killing her in her present state.

Moreover, the sad truth in many such situations is that the family and friends suffer, not the patient. If that level of intellectual function itself is worse than death, then the rights of mentally disabled people can’t be so casually ignored.
Prof John Saunders
Abergavenny, Monmouthshire

Polly Toynbee’s article  needs to be sent to the 26 bishops and other believers in parliament who have repeatedly prevented us from gaining the right to die in dignity. With Ireland now demanding “my body, my rights”, perhaps the time is ripe for us “oldies” to demand the same. I am 90 and like so many of us do not fear death, just continuing to live when there is no quality left in life. How we would enjoy our later years if we knew we did not have the eternal worry of how will it end.
Joan Carter

Torrington, Devon

Polly Toynbee takes a swipe at “the religious” but ignores the medical profession, which implacably opposes her view. One reason for this might be the fact that one person’s right to die may become another person’s duty to kill in cold blood. Is it any wonder doctors have their doubts?
John Pritchard
Basingstoke, Hampshire

Polly Toynbee’s article about Katharine Whitehorn strikes a particular resonance with me as my own mother is also aged 90 and in a care home, suffering with dementia. Katharine Whitehorn was my guru. Over the years it has been a delight to follow her column in the Observer, and to learn (for example) to be grateful that I didn’t have to encourage my child to eat up its nice river snails. Nobody asks to end up as one of Jonathan Swift’s struldbrugs.

At the same time as we are keeping older people in a horrible and undignified half-existence, we impose so much stress on students that they become suicidal (Letters, 29 May). You give contact details for the Samaritans. If only we had a National Mental Health Service worthy of the name, rather than relying on volunteers and the police as the first port of call for those suffering from a mental health crisis. How did we end up with an NHS that keeps old people alive when they ought be dead, but allows young people to die when they ought to be alive?
Rose Meade
Faversham, Kent

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