What is the disease from which 30 million people suffer worldwide, and will increase to 130 million by 2050? In Britain, the number of sufferers will be around two million. No one fully understands the details of this disease, and there is no cure. It is an immensely costly disease for the state, and for the families of sufferers. In one case known to me, the out-of-pocket costs to the family were £300,000. Despite the lack of knowledge and the immense cost, research into alleviation is substantially underfunded compared with cancer and heart conditions. And, by the way, one in six of those over 80 will get it. That means you, unless you cheat by dying earlier.
I am referring to dementia, and in particular, Alzheimer’s. But it doesn’t really matter, does it? These are ancient people who have had their lives and are now reduced to gibbering idiocy through living too long. Once we have shuffled them into a care home all we need do is make an occasional visit (they probably won’t recognise us) and hope that they snuff it before their life savings run out. I am being harsh, but how long ago did you badger your MP to fight for the funding of more research, and an alleviation of crippling costs?
I am not qualified to write technically, but in elementary terms there is, in Alzheimer’s, a protein called amyloid-β which clumps together to form sticky plaques in the brain. There is also tau, a protein which causes tangles in the brain. The result is neuroinflammation and disaster. Even mild dementia can kill brain cells. They will never be restored. You will get some idea of the clinical difficulties when you learn that more than 200 clinical trials for Alzheimer’s therapies have been binned because the treatments proved ineffective. And no existing treatment addresses the underlying disease process.
Another area of research is to find ways of staving off the start of Alzheimer’s. Even pushing back its onset for a few years would be of great benefit to the individual and a substantial saving in the necessary care which both the state and the individual contribute. Studies based on drug treatment before the problems start are in action but, as I write, there are no conclusive results, either of efficacy or alleviation – and there may not be. The latest (and large) study failed in its final trials.
Although Alzheimer’s can, in exceptional cases, start as early as the 40s, many readers will see its onset only as a remote threat. But they may well have older relatives who are vulnerable. Until a cure or substantial alleviation has been found, the prospect is not inviting. But the first step is to have adequate powers of attorney: sufferers can no longer make their own decisions. Then the costs of nursing care must be considered – and they are considerable.
Anyone who has assets, including the value of their house, which exceed £23,250 must pay for their care. The average cost of care homes with nursing varies from £631 per week in the North East to £920 per week in the South East. Multiply by 52 and you’ll know how many years your relative will dare to survive. Take charitable consolation from the possibility that part of those fees may be being used to subsidise the low fees paid by local councils for the indigent patient in the next bed.
Oh wait, I must have got that wrong. The last Conservative manifesto undertook to cap care home fees to a total of £72,000. But once they had our votes they postponed its introduction until 2020. And what’s the betting on it appearing at that date, even allowing for our rocky financial future? More fool us for failing to be cynical.
There is a little light on the horizon. There is a correlation between mental activity and the likelihood of dementia. This emerged from a remarkable study in which the post-mortem brains of nuns were compared with their detailed biographies – testing the theory that brain performance is improved following demanding mental exercise. It seems that challenging the brain creates other routes for rational processes. In one dramatic example a nun preserved her mental capacity until death, even though her brain was fully invaded by the plaques and tangles of Alzheimer’s.
So one approach to delaying dementia is to undertake new activities which challenge us to develop further mental skills. It might be learning a new language, mastering a demanding craft or undertaking voluntary work which requires thought and initiative. These are worthwhile in themselves, but if they do lead to fending off Alzheimer’s, we should be grateful indeed. And there is no time to lose. The nuns who fared best were those who showed challenging and intellectual vigour from their childhood.
secondsightblogdotnet 
Thank you Quentin. I recoiled when I read the title thinking – no – Old Age is a very valuable stage of life. It has as much claim to dignity and joy as the earlier years. It brings its own rich and unique experiences. The topic that emerged was not what the title first suggested to me. It is a useful analysis of one serious threat to one in ten of our Australian population (over 65) today.
I find it scary.
You point out a risk that increases with age even though there are more and more cases of early onset reported each year. An estimated 298,000 Australians had dementia in 2011, this number will reach almost 400,000 by 2020.
And 70% of those living with dementia here are being cared for at home. That really poses a substantial challenge to social policy as well as the health care system.
The cost to families and other care givers in the community must be high quite apart from the financial stress that you point out.
As well as the medical solution we hope for it will also take a lot of investment in education for the broader community, emotional support for caregivers and spiritual resourcing for sufferers themselves.
I hear it said about dementia that those closest to patients of this disease suffer more than the patients themselves.
Here dementia is projected to triple between 2011 and 2050, to reach around 900,000 by 2050 and at that rate of growth the call from the general population for Euthanasia will become even louder than it is now.
One theory is that as one uses one’s mental faculty, this recruits stem cells from the hypothalamus, which migrate into the cortex. heir growth allows one to continue to think.
My late father was on the Australian Centenarian program, designed to track dementia and cognition in the aged.
At 98 years he passed while still skyping, using the internet, doing the crossword, but not the cryptic one and reading on line.
At 98 years his neurologist said that 50% of people at 98 years had dementia. As Quentin, above points out, you have to be alive to make it.
There is no doubt that western medicine helps a lot.
Particularly good nutrition and cardiac efficiency, plus some exercise.
lewispbuckingham – Great to read about such amazing capacity in a person of 98. I hope that if you want you inherit the same genes to do lots of enjoyable stuff at 98.
I’m intrigued by the nun who retained her mental capacity despite her brain being full of plaques and tangles of the sort associated with Alzheimer’s. It reminds me of the huge range of mental capacity found in people with Down’s syndrome; some live almost independently and hold down jobs with a little support, while others never even learn to speak. Yet they all have that extra chromosome. Could I have a reference to that nun, Quentin?
I also didn’t know what Galerimo reports, – that more and more people with early onset dementia are appearing each year. Is that because there actually are more, or just because researchers are looking harder, and therefore finding more of them?
Iona, I can’t absolutely help you here. I fear that I have yards of research on this – and the particular case of that nun is somewhere lurking in it some years back – but remained in my memory. I simply don’t have time to go through it. But perhaps more important than an anecdotal case is the general work being done. So the following may be helpful, and gives you a better overview.
http://content.time.com/time/world/article/0,8599,2047984,00.html
http://ageing.oxfordjournals.org/content/36/6/650.full
I have very little experience of patients with Alzheimers Dementia, having been mainly been involved with epilepsy and cerebral tumours as a Clinical Neurophysiologist practising Electroencephalography. However I gather that EEG abnormalities of AD patients are characterised by slowed mean frequency, less complex activity, and reduced coherences among cortical regions.
I have a sister-in-law aged about 65 with Alzheimers dementia. The Irish government treats its citizens rather better than the English – she has been admitted to a nursing home, mainly for old people but with a section for demented patients. She has to pay 80% of her income to the home and the government pays the rest.
I myself at the age of 87 am suffering from memory problems and have had to give up my favourite hobby of writing computer programs. I haven’t yet worked out a way of developing further mental skills but I am sure that reading this blog helps!
My husband died at the age of 67.with a hospital bug CDiff.His mother died at the age of 103 ,6months later, holidaying with us up to age of 100.
It would have been good if she could have shared a few of her years with him..
There must be a reason for all this,only the Lord knows.
Alzheimer’s disease occurs on a numerically daunting scale. However, there are other neurological diseases which occur in too small numbers for the pharmaceutical company model to tackle, because the large expenditure on research and development could not be recouped from the small number of patients. Among these are the neurogenerative disorders: motor neuron (MND); spinal muscular atrophy and hereditary spastic paraplegia and Parkinsons; the so-called orphan diseases
The Sheffield Institute for Translational Neuroscience is a remarkable laboratory formed to bring the scientists and clinical researchers working in the many different fields of neuroscience under one roof “with the opportunity for a co-ordinated approach to the development and clinical evaluation of new therapies based on rational targets of proven pre-clinical effectiveness”.
Projects such as: “Utilization of features of the early disease phenotype in a zebrafish model of MND for pharmacological screening to detect small molecule neuroprotective compounds” is one of many fascinating projects.
Their website is: http://www.sitran.org
Relevant to Alzheimer’s, they also examine the neurons in donated brains from the Medical Research Council Cognitive Function and Ageing Study: http://www.cfas.ac.uk .
In the larger context, healthcare projects and most of the machines and instruments underpinning modern society rest at the apex of hierarchical structures of concepts and facts that constitute the subject matter of their various fields. They provide a launching pad for new concepts. They are the foundation into which new facts and concepts are to be assimilated. Unfortunately, the premise underlying the training of UK teachers is that Subject Teaching is a conspiracy against the working class.
The outcome, though not the historical genesis of this attitude, is explained in:
“Seven Myths about education” by Daisy Christodoulou, Routledge 2014
There is little discourse on this matter because education activists employ a political technique to impede discussion, namely, never to acknowledge or to reply to criticism.
Healthcare in the face of an increasing and aging population and increase in the number of treatments, and the care of the elderly particularly when afflicted by dementia, should be viewed as problems that require solutions. However, rational discussion and problem-solving are not in the repertoire of populist politicians and their populist constituents.
Peter – why are they called “orphan diseases”?
Quentin – thank you for those links; very interesting. On p 2 of the first article there is a Sister Bernadette mentioned, who may possibly be the nun you had in mind; though it is not clear from the context whether she remained mentally alert all her life, or merely showed early signs of being unlikely to develop Alzheimer’s.
Meawhile I have just come across a short report in “The Week”, quoting from The Guardian, about a trial of a drug which it had been hoped would treat Alzheimer’s patients or at least slow the progress of the disease, but which turned out (disappointingly) not to do so. The report ends: “In recent years, many scientists have come to believe that Alzheimer’s is more complex than previously thought, and that the plaques are merely a symptom of the disease, and not its cause”.
Iona, Orphan diseases have no ‘natural parents’ to finance their investigation from research to action because the cost would be very large and number of patients is small.
However, if you have a registered and patented drug, you may be able to get a 6-month extension of patent term by testing the drug against the orphan disease.
The popular press regularly publishes articles about research and possible new treatments. I have just read another one today by Professor Christian Haass and Professor Michael Ewers of the German Centre for Neurodegenerative Diseases in Munich, reporting from the DIAN project (Dominantly Inherited Alzheimer Network), a worldwide initiative for research into the inherited form of Alzheimer’s disease. This one offers hope of much earlier identification with the prospect of more successful prevention.
It will not be available for my husband who is 87, however, nor for me, six years younger, so our future in that respect will have to take its course. We hope to avoid it of course, but I certainly wonder every time I cannot remember what I have come upstairs for, or take a while to think of someone’s name, and then I tell myself that I have done that nearly all my life, so perhaps I need not worry.
A book by Oliver James, Contented Dementia, offers a lot of practical advice and suggestions for relatives, friends and carers. We found it helpful, though possibly a little over optimistic, when visiting a relative a few years ago. In particular, it was very useful to realise that even if the sufferer would not remember a visit or an enjoyable event afterwards, they would somehow know that something happy had taken place, and the afterglow would remain, and make it really worthwhile to be doing.
Thank you Peter (for explaining orphan diseases)
Martha – re the “afterglow” – I read about a dementia sufferer who said to her grandson “I don’t know who you are, but I know I love you”.