Dementia Care and the Stoneage

In an article titled, Faking Medical Reality, (as opposed to faking dementia) by John Rappoport on a website called The PPJ Gazette, John covers the issues of “when mainstream advocates attack so-called alternative or natural health, they tend to mention that their own sacred profession is based on real science, on studies, on clinical trials.” 

One doctor told me, “The clinical trials and published studies are what keep us from going back to the Stone Age.” 

Personally, I believe that western science and medicine is stuck in the stone age… not the other way around.

Especially when we are considering dementia. It is the holistic health options that have supported me (and many others) to live more positively, and increased my sense of well being. This approach has possibly slowed the progression of my dementia; and even though this approach may not be a cure, it has been worth pursuing, especially when the alternative ‘advice’ was (and still is) to give up living and prepare to die. Instead of going home and preparing only to die, I have chosen to reinvest in living with dementia! Bredesen and others are, in my opinion, on the right track, even if they are not quite there yet. It is definitely worth reading The End of Alzheimer’s: The First Program to Prevent and Reverse Cognitive Decline, by Dale Bredesen.

So, back to the first article I referred to earlier! Further in Rappoports blog, he quotes from an article in the NY Review of Books (May 12, 2011) by Helen Epstein, “Flu Warning: Beware the Drug Companies.”

“Six years ago, John Ioannidis, a professor of epidemiology at the University of Ioannina School of Medicine in Greece, found that nearly half of published articles in scientific journals contained findings that were false, in the sense that independent researchers couldn’t replicate them. The problem is particularly widespread in medical research, where peer-reviewed articles in medical journals can be crucial in influencing multimillion and sometimes multibillion-dollar spending decisions. It would be surprising if conflicts of interest did not sometimes compromise editorial neutrality, and in the case of medical research, the sources of bias are obvious. Most medical journals receive half or more of their income from pharmaceutical company advertising and reprint orders, and dozens of others [journals] are owned by companies like Wolters Kluwer, a medical publisher that also provides marketing services to the pharmaceutical industry.”

Further on in the same article by Rappoport:

The FDA also relies increasingly upon fees and other payments from the pharmaceutical companies whose products the agency is supposed to regulate. This could contribute to the growing number of scandals in which the dangers of widely prescribed drugs have been discovered too late. Last year, GlaxoSmithKline’s diabetes drug Avandia was linked to thousands of heart attacks, and earlier in the decade, the company’s antidepressant Paxil was discovered to exacerbate the risk of suicide in young people. Merck’s painkiller Vioxx was also linked to thousands of heart disease deaths. In each case, the scientific literature gave little hint of these dangers. The companies have agreed to pay settlements in class action lawsuits amounting to far less than the profits the drugs earned on the market. These precedents could be creating incentives for reduced vigilance concerning the side effects of prescription drugs in general.”

Although it may seem I am rambling a lot today (and it has taken me a while to write this), there is another article I feel is relevant to Rethinking not only dementia, but ‘modern medicine’, health and well being, which is on depression. Even an article in the Huffington post suggests diet research is “Stuck in the stone age“!

In another by Johann Hari article on depression, Is everything you think you know about depression wrong?, he begins by claiming; “In the 1970s, a truth was accidentally discovered about depression – one that was quickly swept aside, because its implications were too inconvenient, and too explosive. American psychiatrists had produced a book that would lay out, in detail, all the symptoms of different mental illnesses, so they could be identified and treated in the same way across the United States. It was called the Diagnostic and Statistical Manual. In the latest edition, they laid out nine symptoms that a patient has to show to be diagnosed with depression – like, for example, decreased interest in pleasure or persistent low mood. For a doctor to conclude you were depressed, you had to show five of these symptoms over several weeks.”

He goes on to state;

Drug companies would fund huge numbers of studies and then only release the ones that showed success.

… I learned the best scientific evidence about what really causes depression and anxiety. They taught me that it is not what we have been told it is up to now. I found there is evidence that seven specific factors in the way we are living today are causing depression and anxiety to rise – alongside two real biological factors (such as your genes) that can combine with these forces to make it worse.

Once I learned this, I was able to see that a very different set of solutions to my depression – and to our depression – had been waiting for me all along.

To understand this different way of thinking, though, I had to first investigate the old story, the one that had given me so much relief at first. Professor Irving Kirsch at Harvard University is the Sherlock Holmes of chemical antidepressants – the man who has scrutinised the evidence about giving drugs to depressed and anxious people most closely in the world. In the 1990s, he prescribed chemical antidepressants to his patients with confidence. He knew the published scientific evidence, and it was clear: it showed that 70% of people who took them got significantly better. He began to investigate this further, and put in a freedom of information request to get the data that the drug companies had been privately gathering into these drugs. He was confident that he would find all sorts of other positive effects – but then he bumped into something peculiar.

Why am I not surprised…

 

The BPSD paradigm was also funded by a drug company, with NO evidence based research to support it, and yet, the dementia sector embraced it, and have clung onto it, almost for life, as if ‘it’ was the solution to dementia care. If you are a regular reader of my blog, and others by those who are choosing to see dementia differently, you will already know there has been a #BanBPSD campaign this year, with more to follow in 2019. The BPSD paradigm is archaic, and no better than being stuck in the Stoneage.

The attitudes of most people is still stuck in the Stoneage, especially in terms of people being able to live more positively than a person in ‘end stage’ dementia. Whilstever society continues to apply a 20th Century post diagnostic management plan or medical model of care to people being diagnosed earlier, and refuse to acknowledge or even consider a 21st Century view of dementia, we will continue to experience the stigma, discrimination and doubting of dementia, especially if we dare to live positively with it. I’ve also written two books on dementia, and although still very well received, both are currently being revised in terms of Banning BPSD.

Dementia diagnosis, and post diagnostic management and support, must be based on a human right approach, and one that is aligned to the Convention of the Rights of Persons with Disabilities and the WHO Global action plan on the public health response to dementia 2017 – 2025. The World Health Organisation states “Dementia is one of the major causes of disability and dependency among older people worldwide.”

Let’s move out of the Stoneage, and manage dementia as a disability.

6 thoughts on “Dementia Care and the Stoneage

  1. Thank you Kate. I also found the research by Bredesen very interesting and refer to it often in my studies, and I see it replicated to some degree in the successful Finger study (Finland), and Singer study (currently underway in Singapore). The multi domain approach has good effect for people, and I would expand that to say that it would be beneficial to all people as it elevates health and quality of life regardless of one’s symptoms, but especially if one has a particular battle to overcome. The Singer study describes the importance of changing aspects of the Finger study to suit the diet and lifestyle of Singaporean and Asian people and this would be tricky to complete a truely gold standard clinical trial.
    On the other hand……
    I also listened to an interview on Radio National a few weeks ago, on the health report, from a researcher who came to the same conclusion that most clinical trials cannot be replicated and thus do not meet the criteria for acceptable research. His advice was that, especially for nutritional advice and research, the only thing he could recommend was for most people to eat less – as we have an obesity crisis in Australia.
    Taking a holistic approach is often not the usual medical advice and thus it is important for us to educate ourselves and read widely and do what seems to work for you.
    Well done Kate, for bucking the system from the beginning, and following your own knowledge. I imagine it would take a lot of energy to be constantly standing your ground and explaining yourself when you should not have to.
    I love reading your blog and words of wisdom as you seem to verbalise and lead research. As the expert in your field, being a person living the experience of dementia, I often refer to you when I train aged care workers and I hope I inspire others to follow your lead and wisdom.
    Best wishes, Bronwyn

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    • Thanks for the info on the Singer study, appreciate reading any updates. I think, although Bredesen and others who are eerging with research or protocols similar to him and who are currently being shunned by western medecine and science, will ultimately receive a Nobel prize for his work. Like many of the chronic diseases, we already know diet and lifestyle are major controbuting factors, so it is common sense to try this approach with dementia. Take care, and best wishes for the festive season xx

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  2. With early diagnosis there is also the major cost to society of “lost”taxes from income, increased health care costs and, where applicable (like Scotland), cost of state benefits to working age people. The stigma of being hidden disabled is a lot down to this point of cost, especially being accused of benefit scroungers.

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  3. Hi Kate thanks for all the work you put into this fascinating blog I look forward to reading the suggested links. I took a lot from the article on depression and see particularly the link it has to all our feeling to positive wellbeing “If you are depressed and anxious, you are not a machine with malfunctioning parts. You are a human being with unmet needs. The only real way out of our epidemic of despair is for all of us, together, to begin to meet those human needs – for deep connection, to the things that really matter in life.”
    My hope is one day professionals advising those living with dementia will see their needs are exactly the same as those undiagnosed with dementia, that being every humans basis need to have meaningful connections with others.
    Hope all is well with you my friend x ness

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