“Your perspective on life comes from the cage you were held captive in.”
― Shannon L. Alder

I remember once on BBC Radio 4’s “Thought for the Day”, the Chief Rabbi once said that the best thing about walls was when you broke them down.

With having developed a profound dislike of ‘managerial speak’, I am loath to want to talk of ‘breaking down silos’. I rarely see silos in fact, being based in deepest metropolitan London.

Yesterday, I took receipt of an advance copy of “What the hell happened to my brain” by Kate Swaffer. Kate is a friend of mine, and a (more accomplished) colleague in the area of dementia. Kate in fact was given a diagnosis of dementia. It’s an outstanding book if you want a very fine grain account of one person’s life reacting to a diagnosis of dementia (and the impact this has on others).

I freely admit, now, having worked both on the wards and in research on dementia that I had barely scratched the surface. In my research degree at Cambridge, I proposed a new way of diagnosing one of the frontal lobe dementias, characterised by changes in behaviour and personality. But I think on reflection I knew little of the impact a diagnosis of this type of dementia has on families.

A few years later, I was a junior at the National Hospital for Neurology and Neurosurgery. I remember clerking about 15 elective patients weekly, and organising their investigations (as well as doing their lumbar punctures), in addition to the emergency work. But I knew very little of their individual “back stories” personally.

The focus of the discussion of healthcare tends to be focused on physical silos, such as how health and social care are organised differently. But even now I don’t think I have a clear idea about what each of the various health professional groups can do for a person with dementia (and their closest). I would like to think I know better than some, but that might be human nature.

I think even as a junior I would have benefited from work shadowing people working in other disciplines, but, with such a packed medical undergraduate timetable, this might have been a luxury too far. The fact is I had one hour-long lecture in the whole of my clinical course on dementia, and even then that was ‘bundled’ with delirium.

The legal part of my training has to think about how necessary and proportionate these ‘walls’ are. Walls can be important in marking the boundaries, say for example if you don’t want confidential information ‘to go walkies’ into the wrong hands. To give as an example, you might be denied an insurance policy, or offered one at a vastly inflated premium, if somebody somewhere had scribbled ‘incipient dementia’ as a guess in your medical notes somewhere.

When studying business management, we would often discuss ‘performance management’, a term I personally hate. I think of it in terms of ‘how to get the best out of people’. These shorthand terms tend to do actual ideas a gross disservice. For example, I have found excruciatingly embarrassing the attempts of some senior clinicians to define the purpose of “integrated care”, when I see the focus, in the area of dementia, as persons having their needs attended to in the right place, in the right way at the right time.

In discussing performance management we would discuss whether you needed first-hand experience of a subject to give it a 360 assessment. The answer, to the question framed by managers, was unsurprisingly no – but it is also that it is the case that there is a very well known Professor of Psychiatry at John Hopkins University who lives with bipolar affective disorder.

Language is a powerful way to impose walls, and indeed power. The term ‘dementia sufferer’ is one such example, although I do not for one minute deny that there are some people who suffer. I think the term ‘dementia friendly community’ in the wrong hands can invoke a spirit of ‘does he take sugar?’

When I personally found myself taking on a new identity as a result of becoming physically disabled, when I was in a coma with acute meningitis, in 2007, I became more aware of walls in my life. Although this was a sad event in itself, it was also a very happy one for me – it heralded the start of my abstinence and recovery from alcoholism. A journey which has taken me eight years so far, successfully.

So I would like to conclude with this:

“There are four kinds of people in the world, Ms. Harper. Those who build walls. Those who protect walls. Those who breach walls. And those who tear down walls. Much of life is discovering who you are. When you find out, you also realize there are places you can no longer go, things you can no longer do, words you can no longer say.”

― P.S. Baber, Cassie Draws the Universe

Anything can happen to anyone at any time.

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2 Comments

  1. Fine post Shibley. Thank you.
    It also helps me understand why GPs are so willing to support but can only ask “what do you need? How’s it going with…”
    That’s why the #KiamaDAG is doing a “post-Dx survival kit” this year.

  2. Eric Watts says:

    Excellent article, profound and rich in implications for everyone

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