Dementia has hit the headlines recently with an Alzheimer Trust report showing there are far more people suffering with the condition than previously thought while the funding for research is 12 times less than that being devoted to cancer.
Muddying the waters further has been the contribution of Alzheimer sufferer and author Terry Pratchett who raised the question of the right to die for dementia sufferers.
The research found that there are 821,884 sufferers, compared to the previously quoted 700,000. The number is expected to pass 1 million by 2025.
The total cost to the economy was found to be £23 billion a year. This was made up of social care, unpaid carers and productivity losses. Every patient costs the economy £27,647 each year - nearly five times more than a cancer patient, and eight times more than those with heart disease, according to the research.
Despite the costs the amount being ploughed into dementia research is twelve times less than for cancer - £600 million compared to £50 million a year.
There are though clear problems in getting the recognition for this disease and so the subsequent support and research funds needed to find an answer.
The research also rightly identifies how so much of the caring falls on the family and friends of the victim of dementia.
My 80-year-old mother took on the care role as my Dad slipped deeper into dementia . During the final two years before he went into a specialist home my mother struggled to cope. The irrationality of actions such as my father getting on his hat and coat every night to go home. We think home was a distant memory from childhood. Then there were the wanderings in the night when he would come down stairs and turning everything over and attempting to climb out of the windows. There were the accidents that brought the ambulance around. The care he received was generally good as far as we were aware but there is so much room for abuse. Dementia homes can seem like asylums at times. The view that they are like warehouses of death is not totally inaccurate.
Terry Pratchett addressed some of these issues. He argued for the right to die when and where he wanted to without repercussions for his nearest and dearest. The rational of much he said made perfect sense. He does not want to suffer at home or be stored in a care home. However, in making the case for dementia sufferers to be assisted to die he opened a potential Pandora’s box.
Mr Pratchett waved away suggestions that once assisted dying was legal there would be a pressure on the old and vulnerable to take that path. He mused that such a thing could only happen in a real tyranny. His views were at best naïve. We live in a society that puts increasingly less value on life. It is increasingly a case of serving the machine that is market capitalism. If the assisted dying option became available there is little doubt those with conditions like dementia would be helped on their way.
There is also the question of third parties making judgements about those suffering with the disease. Had I been asked to make a judgement on my father in the late stages of dementia I would not have been able to do so. Neither I nor anybody else as far as I am aware knows the cognitive state of the dementia sufferer. They have by the later stages moved off into another world totally. They may be troubled in that place or they may be happy with no responsibilities and simply enjoying life mentally. No one yet knows, so how can any third party make a judgement on another’s life. Seeing my Dad go down hill from a strong confident individual to a person that did not recognise his own wife and sons was devastating for the family but what about him? He passed away peacefully, after a good life. A bit of suffering for his nearest and dearest should not really enter the equation on life and death matters. It is for these reasons that I would say that euthanasia should not be seen as an answer for dementia.
The other route of supporting victims and carers as well as putting more funding into research is the one to follow. It must be hoped that this more humane route is followed in as the way to address the dementia time bomb. Voluntary euthanasia is certainly not the answer.
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I don't think Pratchett was asking that people who were already quite demented to make this decision. He wanted to make it himself, when he was still well enough to make the choice. The system is only open to abuse, if you allow others to make the choice for the person who is dying. I imagine this would be a decision that's taken quite early when you're diagnosed with an illness that there is no cure for. At some point, like it or not, you're going to lose your mind. And for those who believe that the mind really is who they are, then this is a fate worse than death, and understandably would want to leave this mortal coil before the real indignity and humiliation set in. There is a difference between assisted suicide and euthanasia, and if you understand it, you'll find yourself perfectly capable of supporting one (assisted suicide), and not the other euthanasia.
ReplyDeleteWell said, Radio Records. There is a great difference between the two. The former is a terminal patient making their own health care choices, by cultural definition (post WWII) the latter has come to mean much more than "the good death."
ReplyDeleteRegardless, we should all have advance directives (or living wills) that clearly state our care wishes and designate a proxy for us - one who knows our feelings on health care options and is willing to abide by them.