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The future of dementia care is a different place. They do things differently there.

The intense and snake oil oozing slogan of the year has of course been “take back control”. It was wot won it for the EU referendum and won the vote for the Brexiteers. Donald Trump noted the power of this verbal drug, and made it a central theme of his winning campaign. Choice and control, like the slogan, have been central planks of English dementia policy, but actually can pass under similar levels of lack of scrutiny. For example, anyone with dementia who has full legal capacity but is known to make dodgy risky decisions on account of the function of his or her brain one should have ready adequate safeguarding processes in the use of a personal budget, but unfortunately where ideology trumps good clinical practice, problems lie ahead.

In a rather quick answer in the evidence gathering session of the NHS Sustainability Committee, Dame Sally Davies, the current Chief Medical Officer, gave the briefest of description of the impact of austerity in strategy analysis and future implementation. And yet the implementation of this political policy, which has seen national debt explode and immeasurable cuts, has had an impact on an ability of provision of dementia care.

If you take as a basic definition that innovation is the successful implementation of new ideas, I feel that it makes intuitive sense to think of ‘frugal innovation’ as a valid solution for residential care in dementia, as it “responds to limitations in resources, whether financial, material or institutional, and using a range of methods, turns these constraints into an advantage” according to a Nesta definition.

It is anticipated that successful frugal innovations are not only low cost, but outperform the alternative, and can be made available at large scale, and, often, but not always, frugal innovations have an explicitly social mission. I came across this ‘social mission’ in a drive for innovation when reviewing the impact of the work of Buurtzorg Nederland earlier this year for my book on enhancing health and wellbeing in dementia to be published early next year.

Even the briefest scan of recent frugal innovations in India will convince you of the rather unusual skillset and mindset required for frugal innovation, along with a huge price-sensitive market and a willingness to experiment.  There is no doubting the scale of the financial distress of the NHS and social care, and yet extreme conditions and major gaps in service provision are exactly what provide the perfect storm for the provision of frugal innovations.

Strengths in service and business model innovation create an advantage in creative remodelling of product-service ecosystems. In terms of thinking about the future ‘sustainability’ of the NHS, some further factors loom on the horizon, such as the sheer numbers of people in the ‘aged bracket’ (even though the prevalence of dementia is falling).

People I know are generally sick of ‘change’, ‘leadership’, ‘innovation’ and ‘social movements’ in the social media especially Twitter, and yet continuing with the status quo for residential care of people with dementia, with highly complex needs in health and social care, and profound co-morbidities, is barely an option. Prof Sube Banerjee kindly grew attention to the prominence of both factors in his plenary at UK Dementia Congress  this year in Brighton, and I could not agree more with his appraisal. Sube kindly did the main foreword for my new book.

Caring for rapidly ageing societies will require completely new approaches to health and social care, including the radical rethinking of the generation of value that is apparent in some examples of successful frugal innovation. But also on the event horizon is that we do not know yet whether technology will provide a massive financial dead weight or will end up being the saviour. I suspect in fact it will be the latter, because new technology platforms are drastically reducing the cost of some forms of innovation, which is creating huge new opportunities for frugal innovators, particularly in services. When Tony Benn became Minister for Technology in 1968, the question was not whether to use technology, but how technology could be most intelligently used. This will continue to be a major theme in enhancing health in care homes (“EHCH”).

Formulating strategy for dementia is by and large difficult, for other uncertainties and risks on the event horizon (some of which extend far beyond the time scale of most electoral cycles). The compression of morbidity depends on the scale and pace determined by the success of neuropharmacological development, and, like the workforce in the care industry, Brexit might have a rôle to play there. At the moment, the Government has no idea how much money could be saved by adequately addressing the social determinants of health, although one could possibly hazard a guess at the financial costings of discrete areas of harm such as obesity in Glasgow or alcoholism in Liverpool, stereotypes aside. We don’t know how much there will be in the way of ‘proceeds of growth’ as the UK economy seems to become one giant ‘gig economy’, and essential drivers of policy seem to be undergoing volte face reform at the drop of a hat, such as the pension ‘triple lock’.

I myself am quite a way on the left of centre of politics, but I do worry about the extent of shroud waving concerning the future. The system as a whole needs confidence to listen to all views (“nothing about us without all of us”), and needs to fund innovations properly or else they will essentially will be set up to fail. There is no doubt in mind that two message that ‘sustainability and transformation plans’ concerning frugal innovation, namely ‘it entails making better things, not just cheaper things’ and ‘frugal innovation is about remodelling, not just de–featuring’, have become somewhat lost in translation in some areas. Given the sudden launch of the re-disorganisation of the Lansley reforms in 2012, there is a profound mistrust of Government introducing any change. Big Charity also loom large on the profound mistrust agenda, as nobody in public really knows where Dementia Friends from the Alzheimer’s Society came from at the drop of a hat in 2012.

The problem with the sustainability and transformation plans is that they can too easily be interpreted as a cover for cuts, downgrading drastically the offering from the NHS and social care, so that politicians can conveniently avoid funding care adequately. With a public sector on its knees, services then become ripe for privatisation. There’s no doubt in my mind that the ideological drive to introduce private markets in the NHS and social care has done much to add additional costs and waste, at the expense of quality (for example safe staffing), but likewise it would be unreasonable, to take the Aunt Sally argument, for every computer in the NHS to be built by the State.

I feel that there has now to be some degree of trust in ‘taking back control’, otherwise policy in dementia is run by mutual collusion behind close doors by Big Charity and the Cabinet Office. There is much better news from @NHSEngland’s EHCH programme. Currently, within six vanguard areas, care homes are working closely with the NHS, local authorities, the voluntary sector, carers and families to optimise the health of their residents. The enhanced health in care homes care model is an adjunct to the other new care models that are delivering whole population healthcare. It will become a core element of the multispecialty community provider and primary and acute care system  models.

And for me there are essential shifts in gear which are going to take place in EHCH (full details of the new framework as published in September 2016 are here.)  It’s essential to get rid of a narrow focus on medical rather than holistic needs; a financially distressed care provider market which will inevitably impact on quality in some care homes; and there are unnecessary barriers between organisations in different parts of the health service and between the NHS and other sectors, in particular social care getting in the way rather than facilitating the implementation of health and care planning.

The EHCH vanguards have identifed the following conditions which are critical for success, and I agree with all of them. [Figure reproduced under open government license.]

Evaluation strategy for new care model vanguards

 

And we cannot get away from funding – if it is a choice between general taxation and insurance, general taxation wins hands down for me. Firstly, if NHS England wants to usher in a new age of personal genomics where risk of dementia can be predicted quite accurately to some extent, this can impose an information asymmetry unless there is full non genetic discrimination which would make the operation of private insurance markets unworkable. Also, if you wish to send out public health messages about prevention and risk reduction of dementia (and we know they’re unreliable – for example low education is a risk factor for dementia allegedly, and yet Ronald Reagan, Harold Wilson and Margaret Thatcher are all described as developing dementia in their latter years), then it falls within the scope of private insurance providers to invalidate your insurance if you do not disclose or misrepresent your lifestyle having taken out a policy (i.e. you claim to eat and smoke within safe limits, but you don’t, and actually are putting yourself at higher risk of dementia.)

Taking back control over dementia policy is going to be tricky, but in the same way immigrants are not to blame for the quality of your public services, the number of older people or people with dementia should not be blamed either. The future is a different place – they do things differently there.

 

@dr_shibley

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The Autumn Statement will do nothing for dementia. Oh what a surprise.

With Wendy Mitchell being refused personal independent payment despite living with dementia and needing support for independent living, we can take announcements on universal credit with a large dose of salt. And the housing revolution has not exactly happened since the mass sale of council houses in another whirlwind revolution.

So – I want to break something to you gently.

Big Charity won’t ‘fix dementia’.

I know that people will refer to their interaction with Big Charity as liberating and helping them ‘to get their life back’, but the narrative of Big Charity has been articulately painted to lull you into a fraudulent sense of complacency.

Since 2012, the Prime Minister’s Dementia Challenge, the same Prime Minister who has helped to bequeath you astronomic national debt, a #Brexit which will cost billions and a foreign policy in disarray, made absolutely no effort to include social care.

Now, care homes which have been described as “good” by the Care Quality Commission can be pretty diabolical. A third of nursing homes don’t do special provision for people with dementia’s complex needs, and many local authorities say they can’t cope with providing social support for people needing care at home.

This is absolutely no surprise from a narrative which has relentlessly pursued an agenda of a ‘Small State’ offering jam tomorrow, or a cure by 2025 which is only nine years away now. Every month or so, there is another new breakthrough, or another drug failing at phase 3 trial level. But a piecemeal therapy might come – and hope is important. But false hope is cruel.

Big Charity have been successful in campaigning for closing the ‘diagnosis gap’, with gongs to boot, but we still don’t have a handle on quite how many people have been wrongly diagnosed with dementia, particularly during that period when NHS England financially ‘incentivised’ testing for dementia.

Big Charity for dementia is not “just about managing”. In fact, they’ve never had it so good.

Every misdiagnosis is a tragedy, and yet there is been no outcry over this. There has hardly been an outcry in a call for a public enquiry into the Orchid View care home deaths attributable to neglect. This is apparently not how our society works, as long as we conclude every article in a newspaper with a trite ‘here’s how you contact the Alzheimer’s Society, and you become a Dementia Friend’.

This narrative has been built up to treat social care as an irrelevance. This fantasy is of course shattered once somebody finds she cannot go to work any more because her parent has progressed Alzheimer’s disease and needs round the clock care. For some reason, economists tend not to draw attention to the opportunity cost of unpaid carers deprived of doing any other job for the economy.

It also treats the NHS as a complete irrelevance to people with dementia, but people with dementia are deserving of having their physical and mental health needs like anyone else. A lot of acute care goes into looking after people with dementia, including falls, sensory impairment, infections, incontinence, and yet there is no narrative on enhancing health for people with dementia – only a ‘fight for a cure’ for the last few years.

The whole thing quite frankly is a disgrace. But the skill of Big Charity is always to shift the goalposts as if their interest in dementia is one giant marketing and PR programme. Slick ads don’t get around the issue of a NHS and social care system at breaking point, and a complete disrespect for professionals at sky high level.

Dementia does not exist for the benefit of Big Charity or for others to “print money” from grants. Shocking but true. Big Charity have helped to contribute to a society where the UK wants to compete with Donald Trump for the lowest corporation tax rates in the universe. Philip Hammond MP, safe pair of hands who was Chief Secretary to the equally disastrous George Osborne MP, intends to raise the living wage, but have the consequences on the care sector been thought through?

We are encouraged to care more about offshore multinationals able to squirrel away their tax abroad, “investing in the UK”, or the profit margin of companies, than a system which can care for older people, many of whom who have dementia, properly.

Enhancing health and wellbeing of people with dementia, and carers, needs action not words. It needs to go more than ‘giving people a voice’, important though that is, and “giving people a life back”. It has to go far beyond carefully worded soundbites. For example, Big Charity now wants to talk about “people affected by dementia” in a wish to clump people with dementia and carers together. But they are not the same. They have complementary but different rights. For example, Truffle the Cat’s right to kill a mouse is not the same as that mouse’s right to life.

The Autumn Statement at lunchtime will do nothing for dementia. But in this small state liberal Big Charity Society, this should come as no surprise. You only have nine years to wait for a cure anyway.

 

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A renewed settlement for dementia is needed nationally, with integration in pole position

The fact that dementia care and support are so fragmented in the devolved administrations of the UK means that a cost saving in timely diagnosis in the health budget will not easily be apparent in national accounting of improved quality of life in the social care budget. In many ways, the dementias constitute a ‘final frontier’ as an issue in society. Anything can happen to anyone at any time, and is it inevitable that we must all die of something. That there are more of us living longer is a testament to various things, possibly not least particular lifestyle or ‘risk reduction’ decisions. More of us living longer will mean more of us developing dementia in all likelihood, as we know the risk of developing dementia increases with age. I heard a joke recently that the only part of a hospital you would find soon not populated with people with dementia would be the special care baby unit, but this is clearly to exaggerate the point.

 

The dementias, over a hundred of them, and of which Alzheimer’s disease (more correctly a syndrome) is the most common, are commonplace. You’re pretty likely, at the very least, to know someone who knows someone with dementia. The disclosure of a diagnosis of dementia can appear as if the ‘professional’ least wants to talk about it, but the ‘patient’ wants to find out as much as he or she can. Dementia is not just a condition of ‘old age’, however, and as a society we need to have a mature attitude for people say in their 40s who see their trajectory of friend and family life, and/or employment, disrupted. At one level, they are all conditions of the brain, and we mean them currently to mean chronic, progressive conditions which get worse. There are ‘symptomatic’ treatments, often very limited in time and scope (but not meaning they’re not “worth a try”). But a disclosure of diagnosis is never solely to one person – or at least should never be solely to one person. Nearest in close relationships are inevitably involved, and have hopes, worries and expectations about the future. To turn around the iceberg (erroneous) belief that all people with dementia are in ‘advanced stages’ has not been easy – and for people who have done this credit must be placed where credit is due.

 

As the classic Ian Dury song goes, there are indeed ‘reasons to be cheerful’. We know a lot more about the science of dementia. There’s a lot more of us living beyond “young” or “mid age”. It has recently had the political spotlight shone on it, but with this scrutiny must inevitably come responsibility. But, for some, the diagnosis can come as a ‘devestating shock’, in that society has conditioned us to fear dementia as more than other entities such as cancer, where there has been marked medical progress. But – piecemeal improvements with time will come for particular medicines, maybe for some with particular genetic or structural footprints, where we can chip away at an iceberg. It might well be the case that particular genomic specs will have a rôle to play here. To have framed it as a ‘cure by 2025’ might have been political expedient in providing a robust vision, but was always inherently flawed. There is a huge amount of research being done into research, and inevitably we all have to be mindful of not reinventing wheels. Much of this research, like government reports, has been done before. Replication is useful, but not when resources are scarce and there are significant opportunity costs.

 

Dementia, more so than many other medical conditions, is profoundly human. It has been necessary and proportionate to see the person beyond a mere diagnosis. Dementia never travels alone, and it’s not uncommonplace for a person with dementia to be living also with five or six other conditions such as lung disease or heart failure. This means that dementia, unlike many of the societal challenges facing us previously, is not simple. It made sense for governments to ‘solve’ other problems such as outbreaks of communicable disease or ‘easier problems’. But there are strong reasons why a national ‘strategy’ for dementia must be nevertheless rigorously pursued, with the previous strategy having expired after five years from 2009 (in 2014). This is even more so in the case of strong drivers for care and support after diagnosis potentially falling apart at a local level due to a plethora of factors, such as postcode lottery of service provision, or even personalised health and social care budgets. We need to renew our contract with the growing number of people with dementia in the UK, approaching now one million, and the solid huge army of carers paid and unpaid. Without unpaid family carers, the system following diagnosis would truly implode – and preserving their health and ability to cope is essential.

 

It is essential that with our improved knowledge of the specifics on dementia we are able to diagnose the type of dementia accurately, and have the skills to do this wherever. The distinctions between primary and secondary care are getting increasingly blurred, as we progress, albeit at snail’s pace, down the pathway of integration. Medical professions know not to give certain drugs in certain types of dementia, to avoid making things worse. But much more importantly – the attitude of ‘nothing can be done’ must be turned around; if a person has complex visuospatial problems following a dementia such as posterior cortical atrophy, the needs of that person must be attended to by occupational therapists, or if a person has complex linguistic problems following a dementia such as primary progressive aphasia that person must be attended to, for example, by a speech and language therapist. If a person is prone to eat sweet foods and drinks in progression of dementia, he or she should have a dietician’s input. If a person develops problems in movement or gait following a dementia, it makes sense for him or her to see a physiotherapist. This enablement narrative which is emerging puts to full use the skills base of the allied health professionals, and this expertise is much needed in the anticipation of care needs, or care planning, say for living life to the full and in ‘avoiding admissions’ to hospital care. Continuity is king.

 

But a national strategy in the UK, where people with dementia and carers get help in the right way, right place, right time, is a testament that we as a society wish to promote wellbeing as well as quality of care, from diagnosis to beyond death, wheresoever that is, at home, in hospital, in a care home, or in a hospice, for instance.  Dementia is not an area which respects traditional boundaries – e.g. young vs old, or health vs social care, requiring a true multidisciplinary boundary-less approach. The complexity of living with dementia means that it is no longer feasible for people to ‘blame’ people with dementia, calling people who are distressed due to a combination of pain and difficulties in communicating as ‘challenging’ – or people with dementia who talk round a subject as ‘confabulating’ – or people who are not engaged in environments promoting contentment as ‘agitated’ – or people who want to go for a walk but haven’t made up their mind as ‘wandering’. “Dementia friendly” care, in as much as the term is genuinely useful rather than a marketing gimmick, is much more than the décor and colour scheme of buildings, also puts personhood first, in other words not having a rapid turnover of staff, or having staff who are too burnt out to care. One cannot underestimate the huge power given to us from the life and teachings of Kitwood.

 

A national strategy for dementia is an endorsement of a long term planning commitment from society to valuing people who have contributed much to society. It is a signal to playing to their strengths. It is said that Ronald Reagan, even with advanced dementia, used to enjoy reminiscing about skills he used in employment in his 20s. But the fact that ‘dementia never travels alone’, and that comorbidity is a norm rather than an exception, means that the national infrastructure has to be fit for purpose, with both generalists and specialists in the workforce, building on the great work in ‘awareness’ from groundbreaking initatives such as ‘Dementia Friends’, electronic patient records, but also a shift in ethos, such as not dosing people up inappropriately in care homes with antipsychotic drugs, greater readiness for advance care planning, access to key components such as legal advice or appropriate housing, a willingness to engage with palliative approaches or end of life when the time comes. The infrastructure must accept also some unpalatable truths – such as we may not be able to provide for the complex needs of residents in care homes when other solutions might be more appropriate, such as community nursing or hospital at home. A more timely diagnosis will mean more people living knowing the diagnosis of dementia than before, and this means a greater responsibility for the signposting of knowledge and information beyond ‘silos’ to encourage wherever possible independent living. And this ethos – in keeping with the regulatory codes for the NHS and social care for example – must fulfil the essential safeguarding and safety obligations from professionals, making sure care is not delayed (say in getting out of hospital or getting into a residential home), health needs (both physical and mental) are not simply ignored irrespective of care setting. There inevitably needs to be a political, social, economic, legal, technological and financial/economic commitment for this renewed dementia strategy with integration centrepoint to reveal itself.

 

The narrative has though undoubtedly changed in other ways. The link between dementia and disability is much clearer in people’s minds, as are the fundamental human rights of people living with dementia (and reciprocal ones from carers) impacting on all aspects, diagnosis, care and support, formal and informal. With this greater definition it is hoped there will be accompanying a greater respect and dignity – and a stronger sense of solidarity, reciprocity and citizenship. No longer can research and service provision be ‘done to’ people with dementia and their closest, but rather the attitude should be ‘done with’.

 

One can only believe in choice and control if the system is not impoverished. We are lucky in the UK in not being a low income country, where different considerations of equity are inevitably involved. But nonetheless we should all be on our guard against inequality, the social determinants of health. Knowledge is power, but likewise ignorance is not bliss after all? We know the numbers of people living with dementia and caring are increasing. We know this could need more resources. We know there’s a benefit from timely diagnosis. We know there is an obligation for high quality of life and quality of care for all involved. We know the wider world has to have a sharp focus on inclusivity and accessibility, which goes beyond ‘friendliness’, but we’ve come a long way in attacking vile stigma and prejudice.

 

But above all – a renewed settlement for dementia is needed nationally, with integration in pole position.

 

 

 

 

Dr Shibley Rahman

London, August 2016

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

Bath-Community-Hospital-Photo

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.

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A response to a radio interview

radio

 

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.

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The neuroscientific inaccuracy of the 'bookcase analogy' in the Dementia Friends campaign

bookcase

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:

bookcase

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’.

Google

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.

atrophy

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).

 

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Changing the story will change minds

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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.

 

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Time to celebrate women living with dementia as powerful leaders

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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).

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and even more bizarre

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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.

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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.

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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.

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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.

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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.

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