My talk for the Community Hospitals Association on dementia on May 13th 2016 in Bristol


Community Hospitals Association
Challenging Times
Improving the experience of dementia care through community hospitals

Friday 13 May 2016 : 1.50 pm

Dr Shibley Rahman, Fellow of the England Centre for Practice Development, Canterbury, UK.

There are about 800,000 people living with dementia currently in the UK. With no effective longlasting treatment as yet, the policy in England is focused as in many jurisdictions from a perspective of living better with a long term condition. A major flaw in English policy, however, is the lack of real substance to the notion of ‘post diagnostic support’, and I will argue that a better approach will be promotion of people living with dementia as far as possible with independent lives. There is an universal entitlement to health, and for me community hospitals are crucial in offering local, personal, care. There is now an overwhelming case for people with dementia to receive right care in the right place, at the right time, in the right way. Lessons are nonetheless to be learnt from how dementia care is delivered in acute large centralised hospitals, though this type of care is important too.

Much can be done to improve the overall experience of dementia care through community hospitals. I will explain the rationale behind ‘dementia friendly environments’ as a genuine success in contemporary English policy. I will also draw attention to the need to reduce inappropriate antipsychotic prescribing, the need to care for carers, and emphasise how specialist nurses in the community are especially important for continuity of care and palliative care approaches. I will draw attention to signposting the critical need to “reframe” post-diagnostic care in English policy as through ‘enablement’. I will explain why is particularly timely with the development of ‘new models of care’, and worldwide initiatives such as Buurtzorg. I will conclude with the need to promote “rights”, in relation to community based rehabilitation, and why I feel an expansion in capacity of community hospitals is so essential now in English dementia policy.

A response to a radio interview



Original soundtrack here


Mixed feelings about this.

Some blatant unintentional mistruths and misdirections.

I didn’t like the primacy of the diagnosis and the ‘doctor knows best’.

In a way what you call dementia is irrelevant in that your focus should be on enablement for problems people have – irrespective of name. On the other hand, knowing the type of dementia is worth knowing from the perspective of anticipating symptoms (e.g. in vision or language) – and in the specific case of lewy body dementia drugs to avoid.

Also memory problems are NOT ESSENTIAL to make a diagnosis of dementia. I assume he’s getting confused with the NINCDS-ADRDA criteria for Alzheimer’s disease. In a sense, he represents what academic physicians in dementia dislike – conflation of all dementia as Alzheimer’s disease. For example, posterior cortical atrophy can be purely vision, behavioural variant frontotemporal dementia can be purely behaviour and personality, logopenic PPA can be purely language, semantic dementia can be purely language.

The idea of diagnosing pre-dementia 30 years before onset of symptoms is hard sell by research sponsored by Big Pharma. A ‘positive’ Pittsburgh compound result he talks about is not a guarantee you’re developing dementia – and I suspect his is extracted from cerebrospinal fluid involving a painful spinal tap with a big needle in your back.

Talking of which – why NOTHING on living beyond a diagnosis of dementia? The tunnel vision of some in the medical profession is truly astounding. There could be have been a discussion of enablement for example or rights of people with dementia.


And none of the wonder drugs have got approval here or anywhere else, further to the usual suspects e.g. cholinesterase inhibitors and memantine, which have limited efficacy.

As for the idea of seeing patients on their own, for cognitive testing, possibly, but for neurological history a definite no no – an informant history is essential and even more so for the behavioural variant of frontotemporal dementia where there may be no insight initially.

The neuroscientific inaccuracy of the ‘bookcase analogy’ in the Dementia Friends campaign


I am a ‘Dementia Friends Champion’.

I love the campaign as it goes some way into providing basic information about dementia for the general public.

I strongly approve of this, given the stigma and prejudice surrounding dementia from some in the English population

I do not wish in any way to undermine the brilliant ‘Dementia Friends’ campaign from the Alzheimer’s Society and Public Health England, described here.

But please do allow me to say a few words.


I know of the history of the bookcase analogy as used in the ‘Dementia Friends’ campaign.

A description of the crux of this analogy is given by Gemma Jones (2005).

A description of this analogy is given here. The actual drafting of the analogy for Dementia Friends is slightly different albeit precise. I do not a have to reproduce it here.


Problem 1: This bookcase does not hold memory for skills.
Please note that the script of the bookcase analogy does not refer to skills.

That drafting of the Dementia Friends analogy is CORRECT.

Park for a moment in the link above – the description says ‘memory or skill’.

This part is very untrue.

Skill learning is thought to take part in the brainstem of the brain – and most affected in parts of the brain called the sub cortex not cortex. Therefore skills learning is most likely to be affected in the dementia from Huntington’s disease (compare in contrast Alzheimer’s disease).

See reference here.

Skills learning is what we refer to when, say, riding a bike – it’s not memory for facts or events. It’s thought to be quite old in evolutionary terms.


Problems with the actual Dementia Friends analogy

My ‘beef’ with the analogy as given in the current Dementia Friends below I summarised in a Facebook post.

The post is here:


To start off, you have to understand the difference between the organisation of episodic and semantic memory in the brain.

Problem 2 – The issue with the description “memory or facts”

I could immerse you in lots of complicated neuropsychology, but this handy definition I got off Google is accurate and will suffice for the purposes of the blogpost.

This itself is controversial – but say personal facts here include events relating to my past. But you see the point you can’t just conflate this all as “memories and facts” as per the wording of the analogy in ‘Dementia Friends’.


This matters as the part of the brain thought to be implicated in loss of semantic information is in a totally different place to begin with with that implicated in the loss of episodic information.

Semantic memory is really important for our knowledge about categories of things, aka facts.

See this description:

“In contrast, the term semantic memory applies to our ‘knowledge of the world’, including the meaning of vocabulary, concepts and facts: information which is retrieved without recalling when and where it was learnt (Patterson and Hodges, 2000). Tulving (1972, 1983) proposed that these two types of memory were psychologically and neurologically distinct and that amnesia was the result of damage to the episodic memory system. Moreover, Scoville and Milner’s data suggested a critical role of the medial temporal lobe, in particular the hippocampus, in this type of memory (Scoville and Milner, 1957).”

Problem 3 – the issue to do with loss of memory for facts and where this takes place

The bookcase analogy as drafted in Dementia Friends talks about the hippocampus being where “memories or facts” is pretty wrong – episodic memory fine though.

Semantic dementia is thought to start off around the anterior inferior temporal lobe, whereas episodic dementias like Alzheimer’s disease (initially) start off around the hippocampus.


And as I say earlier in this blogpost there are different ‘gradients’ of memory loss according to different types of dementia. The bookcase analogy refers to ‘dementia’, but as we know there are at least a hundred different causes of dementia – not just Alzheimer’s disease.

lobar atrophy

It’s OK-ish to call it the central part of episodic memory loss “the  hippocampus” – though it’s really the general area of the hippocampus (in the medial temporal lobe) – as shown in the classic paper here.


The wider use of analogies in teaching

I don’t have any problem with Gemma Jones’ analogy.

You can read it in her excellent book ‘Care-giving in dementia’ here.

My only problem is that “Dementia Friends” is meant to be a social movement – and not where you literally have clones of volunteers learning a script albeit to fulfil the purpose of an information session.

There is a philosophy that Dementia Friends is delivery of a ‘product’ – conveniently commodified in a standard way to raise ‘awareness’ and to reduce stigma and awareness.

I think the original analogy is useful.

If it is so important for the wording to be homogenised, so that every information session is delivering the ‘same product’ albeit neuroscientifically somewhat wrong, why not just allow playing an official DVD of it?

But there comes a point where versions of analogies can be actively misleading, and does not actually portray accurately what happens in the dementias.

For some not others the truth will matter (particularly if ‘you do research’ another government aim).


Changing the story will change minds



The fundamental concern, not true, about many innovative initiatives in dementia care and support, such as engagement and ‘friendly communities’, is the unintended consequence that they act as a sticking plaster, but very little else. Proponents of sticking plasters will be the first to point out that they’re better than nothing.

But is it actually true that they’re better than nothing?

Take for example the scenario of someone being invited along to give a talk in response to a new Government/charity document, and that person has been given a diagnosis of dementia. Imagine, if after four years of intense ‘awareness’ raising and innovative initiatives into ‘friendliness’, including from some of the biggest names in the business, that person was accidentally left off the scheduled programme.

A concern has been for me is that engagement and involvement serves more of a marketing function, as a printing press for grant raising, rather than genuine involvement. That is, rubber stamp tick box ways of working. You can quite simply have a pathological culture and have the semblance of quasi-involvement.

Look past how that document from Government/charity might have been produced. At first, I have been encouraged to think of this as ‘who’s in the room..’ after Alison Cameron educated me on the ‘no more throwaway’ work of Prof Edgar Cahn, and the co-production workstreams from Nef and Nesta. Alison is totally correct. And it’s essential to add ‘…and who’s also listening to those people in the room.’

I am worried that this document would have been produced by the usual ‘big names’ in the third sector; few from people working in this area with a daily understanding of good professional practice and evidence; and not more than one or two living with dementia or carers. And you see this pattern repeated time and time again, say in the formation of “clinical excellence” guidelines.

And it at once becomes perfectly understandable how a person living beyond a diagnosis of dementia, to use Kate Swaffer’s succinct term, could have got left off the timetable. Shocking but not surprising. Whatever the explanation, the emotional effect has been made, but it is time for all of us to move on – until the next time that is.

Time and time again people with dementia or carers, if at all, are given a small slot, more often than not at the end of the day’s programme, exist as an afterthought for event organisers, with other speakers not aware of the defect. Exceptions though exist; a friend of mine living with dementia was given a slot in the morning in an excellent research conference, and was specifically told to take his time even if the government minister overran.

A lot of faith is put into the rules of the game. But sometimes the rules of the game need changing. There needs to be a fundamental change of culture. People with dementia have been advocating for their rights, but this is as useful as the issue of who is listening. A third friend of mine is about to set out the case for human rights and disability for people with dementia in Geneva; but will the relevant non-governmental organisations listen and act?

Like a dog sitting on the word ‘no’ in the phrase ‘no dogs allowed’, we have to concede Apartheid is no longer the law in South Africa. It is not acceptable to have a sign in a B&B saying ‘No Irish, no blacks, no dogs’. There is normally a lag between a moral outrage, and a change in behaviour. I hope that this will happen too in a change in narrative away from the prejudices of society about dementia.


Time to celebrate women living with dementia as powerful leaders


This year, there were about three reports which were published co-temporaneously on the theme of ‘women and dementia’. And yet there was surprisingly little focus on women, who are living ‘beyond a diagnosis of dementia’ (Kate Swaffer’s articulation), in leadership rôles.

In one way, I think this overall reflects the bias against people with dementia in leadership rôles. The obsession from medicine, nursing and allied health professionals has been predominantly in leadership in their professions.

There is also in parallel an area of patients who are assuming leadership rôles, although the term ‘patient leader’ can lead to unintended assumptions from some, like that that person is presenting himself or herself as a representative.

I think also the classification and taxonomy of subtypes of leaders has generally been unhelpful. I don’t think it’s possible to read too much into the identity type of leadership in a particular person. The range of options, for example heroic, charismatic, situational, transformative, solo, toxic, is a testament to that.

I also worry about people who nominate themselves as ‘leaders’, in the same way that the identity of ‘entrepreneur’ or ‘innovator’ is often bastardised.

I have little trust in the judgement of others in identifying ‘leaders’, howeverso defined. Whenever leadership and award ceremonies come together, it is not beyond reasonable doubt that the right winners are picked.

Are these winners supposed to be “rôle models”? Take for example the recent example of Katrina Percy who has seen both high points (such as in the HSJ and Guardian) and low points (such as countless newspaper articles and the recent Mazars report).


Southern Health


and even more bizarre


But you cannot extrapolate about women and leadership from one example, as countless counterfactuals exist. One person’s Margaret Thatcher is another person’s Barbara Castle. One person’s Shirley Williams is another person’s Clare Gerada.

I have found quite interesting articles on why often women have problems in breaking through the ‘glass ceiling’, such as this one on ‘unseen barriers’ in the Harvard Business Review website.

The ‘second generation gender bias’, I felt, was particularly interesting.

“Many entrenched organizational structures and work practices were designed to fit men’s lives and situations at a time when women made up only a very small portion of the workforce. … A vicious cycle ensues: Men appear to be best suited to leadership roles, and this perception propels more of them to seek and attain such positions, thus reinforcing the notion that they are simply better leaders.”

And the current articulation of ‘the gender issue’ is perceived as inadequate, as per this article also from the Harvard Business Review website:

“The time has come to reframe the gender issue.  In many companies and countries where I work, from Iran or Brazil to Russia, managers tell me that they recruit a majority of young women as they clearly outperform their male peers.”

I first encountered Susan Suchan, living with dementia, from the close group within the Dementia Alliance International. Her blogpost there is sensational.

Great – BUT what is the chance of Susan being given a paid rôle in a large charity as a leader?

One of the main theories about why women do not become leaders is that they do not find themselves onto the right training programmes or with the right informal networks.

But Susan is a leader.

Look at this video.


The Supreme Court were once asked to give an opinion on the definition of “pornography”. They failed to make a suitable definition but did comment ‘you recognise it when you see it’.

Kate Swaffer is clearly an international leader also living with dementia. Her seminal book ‘What the hell happened to my brain?” will be published next year. In addition to ‘power’ as Chair of Dementia Alliance International, she currently has enormous influence in world dementia policy too.


You recognise leadership when you see it. Helga Rohra has advocated away from the excessive medicalisation of dementia as a powerful advocate as Chair of the European Working Group of Persons with Dementia and latterly Vice Chair of Dementia Alliance International. Helga was pivotal in changing the narrative away from ‘the stages of dementia’ to the ‘faces of dementia’ – this was completely supported by the underlying medicine, as progression in dementia can be variable and unpredictable. Helga once asked what the offering of the current global dementia policy would be to the 47 million people living with dementia at one of the G7 events, and no good answer strikingly was forthcoming.



And Agnes is a leader too. She received her MBE today from Buckingham Palace. Agnes from her home base in Lanarkshire with her daughter Donna (whom Agnes calls a ‘rock of support’) has been campaigning very successfully on raising awareness of sensory features of living with dementia.


Agnes does this work for the benefit of other people living with dementia, but also others who desperately need the education. That’s “doing the right thing”, “not necessarily doing the easiest thing”. We don’t need tonnes of infograms and hashtags to realise the value Agnes’ work has brought thus far. Agnes is not ‘owned’ by any organisation, but Agnes is a huge team player as well as a leader.













So here’s a thought – what about a report this time not just on “women and dementia”, ‘engaging women’, but one on “women with dementia as leaders”? That sort of thing might actually change the narrative, from observational and identification, actually to producing a transformative change.

For example, Wendy Mitchell, living with dementia, at the Department of Health is exactly the type of change we need. See her excellent blogpost here.