JKP author Shibley Rahman discusses how person-centred care is not defining individuals by disease entities, but addressing people’s diverse needs and looking at multi-faceted aspects of a person’s background instead.
This is a burning issue currently in geriatric research – Prof Mary Tinetti had published a seminal paper in 2004 on the ‘end of the disease era’; and increasingly in geriatric care, medical and nursing.
I’ve had the privilege and honour now of producing 4 books with JKP – and I have a completely different understanding of the impact of cognitive impairment on a person, compared to when I first started. The reason for this is an actual experience.
It can be all rather too convenient to define people by diseases – e.g. special books on dementia, ‘dementia friendly communities’, ‘dementia friends’.
But did you know that the ‘functional silo syndrome’ is a real thing.
What is it? Coined by an expert in organisational behaviour from Illinois, it refers to structures called ‘silos’ (from the Greek σιρός – siros, “pit for holding grain”) which are large separate structures used for the bulk storage of materials such as wheat. It refers to how, within organisations, there is a ‘silo mentality’ which means whole departments don’t share skills, knowledge or experiences.
Silos are everywhere, though.
It’s worth sometimes thinking about the arbitrary divisions we impose, presumably to make life easier. For example, ‘cognitive impairment’ might broadly describe a performance in cognition which is below ‘normal’ – but then we have to decide upon ‘what is normal’.
The impairment might have happened slowly or fast.
If it happened slowly, it might have been due to a neurodegenerative process in the brain causing it slowly to lose structure and function, for example due to Alzheimer’s disease. This is dementia.
I want to take you first through the chronology of my interest in dementia.
My interest in dementia was initiated through my Ph.D. done in Cambridge on the cognition of frontal lobe dementia.
But I had no comprehension of what it might be like to ‘live’ with dementia.
That was about 2001.
It was not until 2015 that I published my first book with JKP called ‘Living Better with Dementia’. It was looking back on it a very ambitious book which tried to bring into focus some of the latest research as applied to policy as it was developing here in England.
I concluded rather prophetically,
“Do not view dementia as an issue irrelevant to you. In fact, most people know someone living with dementia, or at least someone who knows someone with dementia.”
I’ve become less interested in the biology of dementia, and increasingly interested in an approach which is much less biological. ‘Person centred care’ which respects the identity of the person and his/her relationships with others became a natural home for me. I was delighted to publish with JKP in 2017 my book on the entire care pathway for dementia from prevention right up to end-of-life and death – Enhancing Health and Wellbeing in Dementia.
At that stage in life, I was aware that ‘health’ didn’t really speak to ‘social care’. I realised this as I had just spent a few years researching social care dimensions of dementia which had been completely unknown to me.
I stopped going to ‘dementia conferences’ a few years ago, when it was clear to me that the same faces were giving the talks, and, in some ways even, the research appeared to be going backwards.
A common mantra I would hear is that, ‘Doctors need more training.’
I then wondered about which side these activists were on. They would regularly be invited to meetings from Government or social enterprises done in the name of co-production. But not once did they provide a viewpoint on the savage cuts in funding for social care.
But I am still fond of them.
In 2018, I publisher a book with Prof Rob Howard for JKP called ‘Essentials of Dementia: Everything You Really Need to Know for Working in Dementia Care’ which was supposed to be a whistlestop tour of all the workforce was supposed to know, according to recent guidance. It indeed reviewed well from the British Geriatrics Society, of which I’m a member.
I was very happy to have made this contribution with Rob, who’s one of several outstanding medical specialists in dementia at UCL, where I’m currently an honorary research associate.
In about 2018 also, my mum went into hospital for the first time. It was terrifying. I have blogged about it here.
Whilst she has subsequently developed dementia, this sentinel event, due to pneumonia, was an abrupt change in her behaviour and personality. At the time, I knew very little about this condition – an acute cognitive impairment. Described to me by nursing staff caring for her misleadingly as ‘an acute deterioration in dementia’, the diagnosis was delirium. This is because she also experienced an cognitive impairment happening fast.
But what I noticed the most was how care for a person for delirium seemed to ignore totally my mum as a person. What I saw in that acute hospital was the opposite of person-centred care.
So, on June 18th 2020, JKP will publish my 4th book with them, ‘Essentials of Delirium: Everything You Really Need to Know for Working in Delirium Care.’
And why did I mention silos?
It is increasingly obvious to me that we shouldn’t view dementia and delirium in separate ‘silos’. Delirium puts you at risk of dementia, and dementia puts you at risk of delirium. Furthermore, I suspect that the cognitive impairment which follows some delirium is not like ‘dementia’ pathologically, as per Alzheimer’s for example.
This story is deeply personal to me, and unfolding as we speak.