Tag Archives: #sharetheorange

None of us know what the future will bring. To be prepared is half the victory.

Ayres Rock Chris Shibley

 

 

Through public awareness initiatives such as “Share the orange” from the Alzheimer’s Research UK charity, slowly more and more people in the general public are cottoning onto the idea that dementia is not a normal part of ageing.

An ignorance of what to expect in dementia can be very distressing. Forewarned is forearmed.

I am generally not in favour of aggressive war analogies in the context of dementia, by, say, when you’re overcoming flu, your immune system does launch an attack on a foreign species. You talk about ‘fighting the flu’. Therefore, you can defeat flu.

The problem with the analogy for dementia, however, is that you rarely hear of people who have won their fight against dementia. Defeating a type of dementia is not an unworthy aim, though.

If you do, however, decide to extend the military metaphor for dementia, then there’s no doubt for me that, as attributed to Miguel de Cervantes, “to be prepared is half the victory”.

About 16 years ago to the day, I started my Ph.D. up in Cambridge. I would visit families with dementia all around East Anglia, and do some specialised psychological assessments of areas such as memory or planning in people living with the then-called ‘frontal variant’ of frontotemporal dementia.

I came to focus on decision-making, and I found that risk taking was a much under-recognised feature of people with a type of dementia known as the behavioural variant of frontotemporal dementia, whose calling sign is quite an insidious change in behaviour and personality. This is highly relevant to personal budgets in social care, and also development of therapeutic targets (taking in work in the related area of impulsivity.)

Now, it is known, not thanks to me but thanks to a handful of specialised laboratories around the world, that your genetic blueprint you’re born with can be traced to various well defined categories of frontotemporal dementia, a type of dementia that affects the frontal and temporal bits of your brain. (They’re the parts of the brain right at the front and near your ear respectively.)

Bring the clock forward to 2016, and we now have quite a good idea of tiny parts of the cell, the basic unit of the human body, called “ribonucleosides” which seem to act funny in some of the frontotemporal dementias. This is, of course, significant as this gives us leverage to attack the dementia process – like looking for the weakest link in the enemy army.

I didn’t go to Cambridge last year. In fact, I had not been to Cambridge for a decade until recently when I was invited to give a talk on risk and dementia at one of the Cambridge Colleges.

I instead went to Australia with Chris Roberts, his wife Jayne Goodrick, and one of their daughters. Chris is presently living with a mixture of vascular dementia and Alzheimer’s dementia. Visiting Ayres Rock was my personal highlight.

Again, it’s the case that very bright researchers have worked out that changes to the blood flow around the brain can somehow lead to a process of dementia. It’s well known vascular changes in the human body can be brought about by a whole host of factors such as diet and smoking – this again gives a means of preventing the rate of progression of an enemy army.

neuroanatomy

[source here].

Knowing the plumbing of the human brain can therefore very relevant to working out how to stop the rate of decline in dementia. How well blood flows in the brain is closely linked to the health of the brain through a process called “neurovascular coupling”.

When you think of the size of the numbers of people around the world living with dementia, close to 50 million, this leaves you with two options. One is to give up altogether; the other is to build up bit by bit a detailed working knowledge of the dementias.

I know Chris, living with dementia to the best of his ability, and in an environment which can be optimised as ‘dementia friendly’ as possible, works relentlessly to campaign for recruitment into research in dementia (“Join Dementia Research”).

Working out how factors in the circulation might be progressing in Chris’ dementia would be a wonderful thing to know, and provide much greater precision for a possible therapy one day for people who have the type of dementia Chris has.

The aim of research into dementias is to gather this detailed knowledge, pool it together and share it, and think about how best it can be used to promote and protect the health of citizens. Research is an investment which is inevitably very costly due to manpower and consumables.

Nonetheless, the next step is to make sure the right mood music (and money) is in place to convert this knowledge into something meaningful for a person living with dementia. The regulatory infrastructure of course around the world needs to be able to responsive and responsible to such innovations.

I wish Chris well as he helps to launch next week’s Research Conference for Alzheimer’s Research UK up in Manchester, where other brilliant initiatives such as ‘Dementia United’ providing devolved joined up health and care services for dementia are also afoot.

Anyone involved in research knows it’s a marathon not a sprint; and most researchers I know know they’re in it for the long haul. But we can only get more detailed knowledge as, in other areas, we have a strong, high capacity, workforce making use of all available specialist talent.

You see, none of us know what the future will bring. Anything can happen to anyone at any time.

The UK, being the sixth richest country in the world, is an unique position to do this. The travesty is that social care is on its knees, and this is a painful truth for many people trying to live with dementia presently. And this needs correcting.

The future, on the other hand, might be brighter, if not necessarily orange.

 

 

 

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