By Obhi Chatterjee
When my father was diagnosed with frontotemporal dementia (which affects a different part of the brain from Alzheimer’s) a couple of years ago, his consultant advised my wife and me that there was no conventional medicine which could treat his condition. When we asked what we could do instead, her suggestion that we could explore “alternative” treatments led us to start researching them and giving the most promising to my father. Today, instead of spending almost the whole day in bed, he is more alert than he was a year ago and enjoys watching detective TV series.
My wife and I already knew the devastating impact of Alzheimer’s from seeing the decline of my father-in-law, who passed away last year. In his case, we had followed the conventional approach of just waiting–something we now regret, given what we know now.
The current practice in the UK is to treat people suffering from dementia in the home with the help of carers for as long as possible. Previously, they were sent invariably to a care home, where they would typically be sedated with anti-psychotic drugs.
The first potential treatment we heard about was virgin coconut oil. Like many others, we found that it had a positive effect on my father’s alertness. However, we also discovered that the very organisations we relied on for support–Alzheimer’s charities and, more recently, care agencies – were the most obstructive.
Just wait for your loved one to fade away
For example, in addition to the UK Alzheimer’s Society refusing to research the effect of coconut oil on dementia for “lack of evidence”, their online forum banned me for “advocating” non-prescription treatments. One of its rules forbids the posting of “unsubstantiated claims”about complementary therapies. It reflects an attitude that seems to say: there is nothing to do other than to wait for your loved one to fade away.
In fact, we had nothing to lose by doing something. This post describes how we were able to help my father in spite of these hurdles.I hope that it may encourage others to make use of what we have found out in the process and do the same. It also suggests how massive open online research could be a more fruitful way to cure and prevent dementia than controlled, limited and very expensive drug-type trials.
It was one of our neighbours who first sent us a link to a video about how Florida paediatrician Dr Mary Newport had seen benefits in using coconut oil to treat her husband’s Alzheimer’s. I had been shocked to see that her paper “What if there was a cure for Alzheimer’s and no-one knew?” – published in 2008! Sceptics claimed that it could cause heart disease, which I learned was false – even though that view is echoed in the NHS advice to avoid fat and cholesterol.
Since starting my father on coconut oil, we have gradually added other food supplements that seem to have plausible evidence. An excellent source is the book Stop Alzheimer’s Now! by Dr Bruce Fife. His ‘Alzheimer’s Battle Plan’, explains how coconut oil is converted to ketones by the liver and provides the brain with an alternative source of energy. Other components of the Plan are a low carbohydrate diet including fish, taking care of oral health and a series of dietary supplements (including Alpha-lipoic acid, CoQ10, Magnesium, Vitamin C, L-Carnitine, Curcumin and Vitamin D).
A suspicious approach to supplements
More recently, the book Grain Brain by neurologist Dr David Perlmutter has also recommended coconut oil and similar supplements, adding resveratrol and probiotics. To these, we have added B Vitamins (which have been found to slow the rate of brain shrinkage by lowering homocysteine) along with the powerful antioxidant NAC , which cleared the mucus that had been preventing my father from eating or drinking last summer.
Based on this approach, we started to keep my father’s carbohydrate intake to 50g per day, which is not difficult to achieve if you eat fish, cheese, broccoli, asparagus, etc. Subsequently, a recent study emerged that a high carbohydrate diet increases the risk of dementia in older people by a factor of 3.6.
Researching supplements and diet and then finding out which ones seem to help is straightforward, compared to the cautious and frequently suspicious approach to supplements we encountered from many care agencies. Because they don’t know what the supplements do they usually demand a prescription for them from a medical professional before agreeing to take on my father’s care.
If you face a similar demand, remember that, although it sounds like a standard procedure, it is most likely not only unnecessary, it is also impossible. The supplements we have been giving my father are widely available over the counter and as such do not need medical approval. Indeed, because they are not medicines authorised by NICE, medical professionals are not actually allowed to prescribe them.
How drugs can mess up vitamin absorbtion
After hearing the same requirement from a number of different care agencies, I asked one where it came from. I was referred to the Royal Pharmaceutical Society’s Guidelines on the handling of medicines in social care.
However, these guidelines say that, before giving supplements for “minor ailments”to a client, the care agency should check with the GP that these would not interact with the prescription drugs the client was taking.
But since my father has not been taking prescription drugs for over a year now, with the agreement of his doctors, there was no risk that these supplements would interact with prescription drugs. No drug, no interaction. It is worth noting that, while there are official concerns about the ability of supplements to interfere with drugs, there is no mention of the equally if not more serious problem of the ability of many of the drugs used on elderly people to interfere with the absorption of vital minerals and vitamins that they are likely to be deficient in anyway.
Fortunately, after weeks without a care agency thanks to their irrational allergy to supplements, we have found one which is not only comfortable with giving supplements to my father but also has other dementia clients with whom they are apparently seeing positive results with such supplements.
I would recommend avoiding any care agencies that ask for a prescription or letter from a medical professional before they will agree to give supplements to someone suffering from dementia. Such care agencies probably have inadequate experience of dementia care and put their self-preservation ahead of the needs of their clients.
Dementia isn’t a normal part of ageing
It has been disappointing to see that those funding dementia research refuse to investigate promising non-drug approaches such as vitamin B 12 http://www.alzheimersresearchuk.org/news-detail/10704/B-vitamins-slow-brain-changes-in-a-subgroup-of-older-people even when supported by a large randomised controlled trial. This, together with the absence of a coherent resource for possible non-drug treatments for dementia, has prompted me to make a film to share our research for my father. The film is called You must be nuts!. [www.youmustbenuts.info]
The title reflects both the reaction we sensed from anyone the moment we mentioned we’d found coconut oil was helping my father but also a failure to regulate commercial interests which ensures that dementia will be regarded as an inevitable part of ageing – even though it was rare until as recently as 1978.
If they were interested, the online forums of the various international Alzheimer’s Societies could perform a policy U-turn (with encouragement) and allow people to use them to share their experiences of different treatments. This would provide a way to crowd-source research, generating much larger sample sizes than any controlled trial..
Recently I was delighted to discover that there is already a model for this sort of massive open online research. The website www.patientslikeme.com has been designed to allow people (or their helpers) suffering from any condition to share their experience and to learn from the experience of others. Apart from allowing you to track your progress easily, the resulting data is available to research organisations.
A new way to find out what works
The platform currently has over 250,000 members with over 2,000 conditions who have contributed details of over 7 million treatment and symptom reports, giving rise to over 50 published research studies. Thanks to a $2.4 million grant, they have recently been able to invite patients to lead research projects on their platform.
The data gathered by the site is among those “mined”by Dr Stephanie Seneff, Senior Research Scientist at MIT, and her team to identify trends and patterns. Any similar open research data platform, coupled with advanced statistical analysis, could offer a very promising way to provide the answers to questions about possible treatments for dementia and other disorders in which patients are very interested but which have no commercial potential.
If you are involved with someone with dementia you might benefit from seeing You must be nuts!, trying specific combinations of the treatments mentioned and then tracking your progress on a site like www.patientslikeme.com . The site offers a simple, daily test concerning the mood of the dementia sufferer. However, perhaps alertness could offer a more appropriate way to track the extent of a person’s dementia.
The inevitable global scale of such datasets implies that this type of research could well identify a treatment and forms of prevention for dementia before more conventional randomised controlled trials.
You must be nuts! is due to be published on YouTube in August 2014. Its 3-minute prequel offers a foretaste.
See detailed review in the 2004 book Dying for a hamburger by Toronto coroner Dr Murray Waldman. Until very recently, older people used to be considered wise and there were only 648 cases of Alzheimer’s cited in medical studies in 1978.