Shibley Rahman – The Dementia Society

Where would repeal of the Human Rights Act leave rights based advocacy for dementia?

Shibley RahmanMay 17, 2015 0 Comments

Tomorrow is in fact the day of the ‘Legal Aid walk’ – the annual event where law firms, law students, barristers, solicitors and supporting staff take to the streets in the heart of London to walk a fair old distance in support of legal aid and access to justice.

This is very timely. Law is one of my strong interests; so is dementia. I am in fact trained in both. This is why the imminent plan to repeal the Human Rights Act 1998 is of great significance to me. I have written previously on the huge importance of rights based approaches to dementia in my blogpost here, and I have even devoted a full chapter on it on my new book on domestic and global dementia policy. But even academic lawyers would be the first to admit they’re not astrologers; the future of the legislation on human rights is clearly unchartered territory even now.

There will be very many accounts of the view that repealing the Human Rights Act is a backward step in the law, many given by many eminent lawyers. I do not want to go over the same ground here, but needless to say they are widely available; such as by Philippe Sands or Keir Starmer.

The Conservative Party’s plan to establish a Bill of Rights to replace the Human Rights Act has helpfully been published. It was a clear manifesto pledge. If the opinion polls were correct, no one party expected to win the general election outright, so it’s quite likely the Conservative Party wished to lose the pledge on abolition of human rights to negotiation with the Liberal Democrats, for example. It is currently reported that the SNP wish to ‘fight attempts to abolish the Human Rights Act’. And it has been a longstanding commitment of the Scottish jurisdiction to promote ‘rights based approaches‘ in dementia for people with dementia and carers.

Whatever happens in the term of this parliament is unpredictable. Whilst the “Salisbury convention” provides that manifesto pledges should see the light of day on the statute books, it is also clear that there is a significant number of peers who will not condone abolition of the Human Rights Act. Lord Lester, a Liberal peer, has made it clear on the BBC Radio 4 programme that he does not want to make ‘wrecking amendments’, but takes the attitude that he does want to make the proposals ‘better law’. The Conservative Party have tried to send out the message that the proposed change in the law is not to abolish human rights, but the fact that Labour have just appointed Lord Charlie Falconer QC to spearhead the charge of the brigade as Shadow Lord Chancellor and Shadow Minister of Justice is very telling. Lord Falconer was indeed one of the architects of the original Human Rights Act under a previous administration. All it needs is for a “magnificent seven” in number to rebel; probably the Democrat Unionist Party are not the ones too, but ‘grandees’ with a legal training Ken Clarke QC MP and Dominic Grieve QC might.

Changes to the law theoretically offer an opportunity to include new ‘rights’, such as the right to a timely diagnosis of a medical condition. It is critical to note that not all rights in rights based advocacy for dementia come from human rights; there are rights in equality law which mitigate against discrimination, and rights in employment law which mitigate against unfair dismissal, for example. It is also important to note that not all rights are legal; for example it was morally repulsive to allow segregation under Apartheid in South Africa before a change in the law was afforded. There is therefore some basis to the messaging that rights existed before the Human Rights Act; they have done so since the Magna Carta in fact.

And rights have to be enforceable. At the moment, in England, there is a huge problem with access to justice, hence the importance of such initiatives such as the Legal Aid Walk. Legislation from the previous government in the form of the Legal aid and sentencing and punishment of offenders act 2012 was hugely detrimental for this cause, with concomitant destruction of law centres. Human rights are indeed enforceable through, for example, the High Court under judicial review, or through the Equality and Human Rights Commission.

But the critical thing about human rights is that they’re not as such ‘British rights’. They’re international, inalienable, available to everyone – they’re universal. Whilst we are still signatories to the European Convention on Human Rights, any British citizen is free to petition Strasbourg directly over an issue to do with human rights; it would be a huge deal if the UK sent out a message that it no longer wished to be a signatory of the Convention when it was originally one of its architects. Even with abolition of the Human Rights Act (1998) in this jurisdiction, dementia can still come under disability under the UN Convention for People with Disabilities (“UKCPD”). This statutory instrument has a whole host of rights, including the right for democratic representation and right to participate in public life (article 29) ( which the World Dementia Council would be wise to read). The UK may or may not be under current investigation for breaches of the UKCPD, and we are in any case observing the United Nations Declaration of Human Rights.

These rights are wide-ranging and important for our political narrative. They’re relevant to our discussion of capacity, that people with dementia have human rights regardless of their capacity (related cases such as the Bournewood Gap are particularly important here). Such rights are relevant to various issues, such as “independent living”, and we can learn a lot from the wider disability movement here (such as the brilliant work of John Evans). As indeed human rights are important for the devolution and Good Friday agreements, the discussion over human rights indeed embraces a wide range of stakeholders involved in dementia policy, such as SCIE, where dignity is intimately related to a right to be free from degrading treatment (see their guidelines). And unsurprisingly human rights are totally pervasive to the work of the Care Quality Commission. The success of human rights has been much to do with motivating a ‘social movement’, imbuing a sense of ‘rights consciousness’ in keen followers around the world.

I personally am a big advocate of ‘bounded rationality‘ in strategising about the future, in dealing with risk and uncertainty. The discussion over human rights is clearly politically driven, but is essentially for me about protecting those people who are most vulnerable too. Living better with dementia policy is much enhanced with a rights based approach. Some strands in the debate are rational; some less so. But we are living in uncertain times, and political tensions are high. Soon places of the jigsaw will fall into place, and we will all be able to deal with it at the time.

Living better with dementia

Shibley RahmanApril 26, 2015 0 Comments

I had barely known Chris Roberts, new onto the Twitter platform, when he mooted that the title for the book which I had just published didn’t convey the right perspective.

At first, I wondered who this mysterious ‘Chris Roberts’ was. Chris didn’t seem like a troll to me.

It did however dawn on me, rather belatedly to the book production process, that Chris is absolutely right.

I’ve now met complete strangers all around the world who’ve enjoyed the book. One person even recommended the book to me, to which I replied that I had written it.

“Living well with dementia” sounds very much like somebody external decided what ‘standards’ are for living well (the term is actually the name of the 2009 English dementia strategy).

It has the potential to make people living with dementia feel bad if they have an “off” day (which we are all entitled to have).

At the very worst, it is setting up people to fail, as it is inevitable that there will be aspects of all our lives which are not “well”.

But, having said all that, I feel my first book was entirely justified.

It has even been called a ‘game changer’ by some, but I think I did want to send out a message to my colleagues in the medical profession that focusing on deficits all the time was bound to be demoralising.

It should be much more worthwhile to focus on what people can do.

It still remains one of the few books taking a eagle eye view of dementia, reflecting contemporary research evidence, embracing advocacy, design of homes and built environments, cognitive aspects, and dementia friendly communities.

I remember quite a bit of hostility from the medical profession as to why the book took such a multidisciplinary approach, but my own training has been multidisiplinary, and my personal political philosophy is one of equality and justice.

And this hostility was said with a twang of ‘we know best‘ – which was horrible.

I feel that my first book, published in February 2014, establishes for a wide audience why ‘Living well with dementia’ is more than a mere slogan, in that I hope ‘no decision about us without us’ is more than a chant.

Chris and I, as it happens, are just about to mount Ayers Rock, so to speak.

I am honoured that Chris, Kate Swaffer and Beth Britton have all written forewords to my follow up book ‘Living better with dementia’, to be published by Jessica Kingsley Publishers on July 21st 2015.

I think it’s only fair to warn you that it is a very different book to my first one. The full table of contents for ‘Living better with dementia’ is provided here.

I was profoundly influenced by the 24th Alzheimer Europe conference last year – 2014 – which took as its theme, “Dignity and autonomy in dementia”.

I was very much impressed by the listening to individuals living with dementia at that conference, and at the Alzheimer’s Disease International conference in Perth Western Australia where I was indeed on the international advisory board.

Dignity and autonomy are central to ‘rights based approaches’. All of us are entitled to human rights under the auspices of international law.

Across a number of jurisdictions there’s been a fundamental resetting of the compass from ‘friendliness’ to ‘inclusivity’, and inclusivity under human rights and equality law is a pivotal issue.

Furthermore, I feel strongly that any discussion of ‘dementia friendly communities’ must embrace fully the social determinants of health, or inequalities, in thinking about the ‘consumer experience’, such as housing, transport and education. These policy strands must be brought together at this point of time, I feel.

We are undoubtedly in a much better place than simply a few years ago, though there’s much more to be done.

It’s now patently obvious that in England health and social care need to be fully integrated, to further personhood and to avoid people languishing in hospital due to delayed discharge.

There now has to be an open discussion now about people being signposted to appropriate services too (for example speech and language therapy for a person living with a primary progressive aphasia-type dementia).

But it’s simply not good enough to have a lot of signposts with decimated services in reality. I don’t apologise therefore for introducing whole person care and dementia in my book.

I was struck by how other jurisdictions, particularly low and middle income countries, were trying best to help people living with dementia.

Equity in diagnosis and service provision is now a big deal.

Also, the appropriate allocation of resources is fundamental – and particularly so as regards the younger onset dementia population who may wish to find hope through appropriate services as well as through new therapies or ‘Big Data’.

I don’t deny the crucial rôle a dementia advisor can play, but the case now for a national network of clinical nursing specialists I believe.

They are best placed to produce personalised care plans (and we need consistent standards for this across jurisdictions), seeking out health and care problems before they happen.

It’s known that dementia co-exists with many medical morbidities such as frailty. So somebody who can offer continuity of care has much to offer the ‘year of care’ for dementia under the construct of whole person care.

Howeverso defined, there are clearly big issues with not seeing the big picture. Eating well with dementia is as much about the mealtime environment and attention to the senses as it is about the foods themselves. Incontinence is as much about the environment around the person with dementia as it is about a discussion of sanitary pads and embodiment.

The greater attention to dementia has not been without problems. Some people have inadvertently, by accident, introduced stigma by campaigning on dementia.

Language is important, for example in the overzealous use of the word ‘burden’. We are at last making ourselves familiar with the notion that remarkable talents in art and creativity are unleashed in some people as a dementia progresses.

Also, there is something especially remarkable about the perception of music, causing memories to be unlocked. I, for the first time in my book (to my knowledge), provide a cognitive neural architecture of how sporting memories are unlocked by structures in the human brain to retrieve a ‘gist’, and to improve wellbeing.

Whilst I continue to marvel at conferences including panel discussions on the ‘patient perspective’ without a representative living with dementia, “in my bones” I feel things are changing.

There was quite a huge backlash at the 2015 ADI Conference against some ‘person centred care’ not being person focussed at all, like a form of ‘prescription’.

There was a noticeable movement against “BPSD” and “challenging behaviours” as many of us pointed that dosing people up to the eyeballs to shut them up is completely offensive, when there is concomitantly no search for a root cause in a breakdown of communication.

One person’s ‘agitation’ and ‘aggression’ is how many of us behave when we’re simply pissed off.

But the fact that this narrative is changing is a huge cultural change which has been effected globally, and has had repercussions of the volume of antipsychotic prescriptions. I believe strongly further system change is desirable and possible with elected representatives of people living with dementia taking the lead on service provision and research.

My new book “Living better with dementia” is merely a snapshot of where we are in England at this particular time, at a time of great political and social upheaval.

The English ‘Dementia Vision’ is a despotic dystopic farce

Shibley RahmanFebruary 22, 2015 0 Comments

It’s a moot point whether the new ‘owementia Vision’ document, formally called the ‘Prime Minister’s Challenge on Dementia 2020′ will last longer than the current Prime Minister. Any reasonable person would feel that this has overstepped the line of political decency in being excessively partisan.

It was not so much published yesterday, but, rather, sneaked out under the RADAR of an announcement about how there were now one million ‘Dementia Friends’. Of course, this target was effectively gamed, by the offer of online routes for applying for a badge, and opening up new jurisdictions in the United Kingdom.

The new policy document is here.

One of the offerings in the new document is the reach-out to get a further 3 million dementia friends. Raising awareness of what dementia is is undeniably an important part of policy. But why could this project not been delivered across a number of dementia charities? Charities other than the Alzheimer’s Society have had their activities strangled off in an unbearably toxic atmosphere. The original press release claimed that “the £2.4 million programme is funded by the Social Fund and the Department of Health”. There is clearly also ‘mission creep’ in funding of this project. There then came the lucrative pitches for advertising agencies for this project as advertised by Public Health England. There’s overwhelmingly a need to lead a fight against dementia not necessarily to keep creative advertisers in gainful employment. How is it possible that the funds for a further reach-out for Dementia Friends can be successfully secured when social care is on its knees? Shouldn’t the responsibility of an independent dementia charity to campaign against a devastating situation in social care funding which has not been ring fenced since 2010? With nine out of ten care homes not meeting adequate standards for people living with dementia, David Cameron’s claim for the UK to the best place on the planet to have dementia is outrageously beyond contempt.

The first English dementia strategy was indeed an excellent document, making use of a wide variety of evidence; not simply documents produced by the Alzheimer’s Society. There is a vast number of Alzheimer’s Society initiatives mentioned, but not even with the most polite sop for others in the third sector. This complete lack of plurality in the third sector in dementia is reflected by the bare mention of specialist nurses, which have a huge amount to contribute in proactive case management. The fact that ‘Dementia Vision’ reads like a multi-author chain letter, rather than a coherent vision, is for me exemplified by the lack of acknowledgement that a national network of clinical nursing specialists in dementia would be in a great place to offer training and education of the workforce in dementia, and its different diagnosis.

But clearly this campaign has become severely muted in the rooms of the Downing Street and its friends, whilst the Health Services Journal is devoting a formidable supplement to it shortly. The whole issue of how people with dementia can avoid crises or hospital is a key one in health service provision, and whilst there is barely a mention of social care in the ‘vision’, apart from a ‘better care workforce’, there is mention of the infamous “Better Care Fund”:

But even as Chris Ham, CEO King’s Fund, says, the Better Care Fund is not THE solution. And one of the main solutions on offer, with proper coordination of care, personalised care plans and data sharing, comes in the form of ‘whole person care’, completely airbrushed from the ‘Dementia Vision’ document.

The whole issue of the personalised care plan, as a mechanism for involving personhood throughout someone’s time post diagnosis with dementia, seems to be ignored, and the contributing members of ‘Dementia Vision’ are utterly wrong if they feel that they only apply to advanced care planning:

This is completely opposed to the current evidence-based literature. But this conveniently gets round the issue of clinical nursing specialists who are there at all points after the diagnosis of dementia. An Alzheimer’s Society “Dementia Adviser” will do. Funny that.

But I suspect that this is an inappropriate cheap political point, rather like the title of the document ‘Prime Minister Challenge on Dementia’, rather than a genuine disregard of important policy both here and abroad. Personalised care plans are covered in detail in the work from the Carers Trust and the Royal College of Nurse, and simply because of this disregard of this ‘Triangle of Care‘, together with the airbrushing of social care, my inclination is to flush the ‘Dementia Vision’ document down the toilet.

How the excellent 2009 ‘Living well with dementia’ strategy document got transmogrified into a water-downed ‘dystopic’ wishlist for the Alzheimer’s Society is anyone’s guess, but the chaos in its formation is indeed charted well in Hansard. Even originally in February 2004, and a few months afterwards, the current Government were maintaining a pretence of strategy rather than a wishlist of ambitions.

For example

There are indeed some positive aspects to this, for example the investment in carers.

Greater support for carers: £400 million has been provided between 2011 and 2015 so that carers can take breaks and the Government has introduced significant legislative changes to better support carers, who for the first time will have the right to an assessment of their eligible need.

But even here the issues with the Dementia Action Alliance Carers Call to Action are not discussed. Nor is ‘life story’ discussed properly. The lack of evidence base for ‘Dementia Vision’, I feel, is the most haunting aspect of the work which will come back to haunt their authors. Particularly worrying is the extent to which the document will bind future Governments. The general parliamentary principle is no parliament can bind its successor, but with the catastrophic cuts in funding in social care does a new Government, if different from the Conservative Party and the Alzheimer’s Society, wish to fund a package for induction of top FTSE companies into ‘dementia friendly communities’. The whole dementia friendly communities is not without a significant body of critics worldwide, who have called it divisive and patronising, but this is another shoo-horn for domination from the Alzheimer’s Society.

But then again this would be mitigated against if this programme could be organised by more than one stakeholder, for example the Joseph Rowntree Foundation. As I remarked earlier this week, the “Dementia Vision” document reflects the ‘squeezed middle‘, between prevention of dementia at one end, care homes at another end, and aimless direction for those individuals attempting to live well with dementia who are in the meantime stuck in the middle. Sure, it is all very well to be ‘dementia friendly’, and I recognise the document’s recognition of international law in human rights, but there is no convincing discussion of equality and human rights. In the overall scheme of things, there are some reasons to be cheerful, as Ian Dury and Sube Banerjee put it, for example the EU ALCOVE recommendations for dementia policy.

Consequently, taken as a whole, the entire ‘Dementia Vision’ has turned sadly into a despotic dystopic farce. Dementia UK must, however, be congratulated though for being mentioned in a number of footnotes.

Book launches by Kate Swaffer and Shibley Rahman in Camden in June 2015

Shibley RahmanFebruary 20, 2015 0 Comments

Kate and I are making available a limited number of tickets for our joint event, to celebrate publication of our books on dementia later this year. This event is mainly by invite-only. If, however, you wish to be considered for one of these other tickets, we’d be delighted to meet you. Details of the event are here. We provisionally intend to hold this event on Saturday 27th June 2015 between 12 pm and 6 pm at the Arlington Centre, Camden. 1. Kate Swaffer (@KateSwaffer) and Dr Shibley Rahman (@legalaware) intend to do a joint book launch later this year. Both books are being published by Jessica Kingsley Publishers later this year. Kate’s book is called, “What the hell happened to my brain?” Details are here. Information about this book:

“Kate Swaffer was 49 years old when she was diagnosed with a rare form of young onset dementia. Here, she insightfully explores issues relating to that experience, such as giving up employment and driving, breaking the news to family, having a suddenly reduced social circle, stigma surrounding dementia and inadequacies in care and support. Kate also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis. Kate’s empowering words will challenge preconceptions on dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones. The book will also be of interest to dementia care professionals.”

2. Shibley’s book is called “Living better with dementia: looking forward to the future”, as a follow-up to his irst book “Living well with the dementia: the importance of the person and the environment” which was received with critical acclaim. Details are here. Information about this book:

“What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.”

Kate and Shibley have decided to make a limited number of tickets for this free event for this book launch available to all, but the event is generally by invitation only. If you’d like you to be considered for one of these limited number of tickets, please do let us know. Dr Shibley Rahman @legalaware

Stigma in dementia poses crucial questions for dementia friendly communities

Shibley RahmanOctober 28, 2014 0 Comments

The literature on stigma is comprehensive.

But Kate Swaffer added to it beautifully in the journal ‘Dementia’, with an article today – on open access – entitled “Dementia: Stigma, language and dementia friendly”.

Kate refers to a blogpost by Ken Clasper, a Dementia Friends Champion, which asks, sensibly, what we are trying to achieve with more ‘awareness’.

And if you scroll down to the end of this tour de force on stigma and dementia, you’ll see exactly why Kate is able to opine with such legitimacy and authority.

I conceded a long time ago – in March 2014, in fact – on this blog that the policy plank of ‘dementia friendly communities’ is an incredibly complex one.

The discussion of stigma seems to be one of perpetuity. We’ve seen numerous attempts at it, including the original work of Goffman (1963) on stigma and ‘spoiled identity’.

It’s been re-incarnated as a Royal College of Psychiatrists campaign on stigma.

This morning there was another bite of the cherry.

The report, New perspectives and approaches to understanding dementia and stigma, published by the think tank International Longevity Centre UK (ILC-UK) is produced by the MRC, Alzheimer’s Research UK, and Alzheimer’s Society; it was also supported by Pfizer.

I’ve thought how I could possibly respond to Kate. And I can’t, as Kate is in every sense of the word an ‘expert’.

But it did get me thinking.

It got me thinking of the happy times I had with Chris and Jayne last week at the Alzheimer Europe conference in the city of my birth in Glasgow.

‘There’s more to the person than the diagnosis” is one of the key five messages of ‘Dementia Friends’, an initiative from the Alzheimer’s Society predominantly (and Public Health England). This is mirrored in a tweet by Chris from this morning.

Chris is also a “Dementia Friends Champion“, and lives well with dementia.

Last week, I attended a brilliant all-day workshop chaired by Karishma Chandaria, Dementia Friendly Communities manager for the Alzheimer’s Society. The progress which has been made on this policy plank is substantial, and I am certain that the next Government will wish to support this policy initiative in the English for 2015-20.

It is stated clearly in Simon Stevens’ “Five Year Plan” for NHS England.

It is a core thread of the Prime Minister’s Dementia Challenge.

And the ‘coalition of the good’ has seen the dementia friendly communities policy plank develop drawing on work from ‘Innovations in dementia’ and the Joseph Rowntree Foundation.

And to give the Alzheimer’s Society credit, where it is certainly due, there has been launched an open consultation for a British Code of Practice (currently ongoing), to which anybody can contribute.

But this code of practice does, again, have the potential to be very divisive. It might be painful to make dementia friendly communities, such as the large one in Torbay, ‘fit into this box’.

Torbay in many ways is a beacon of innovation for integration between NHS and care. There is genuine “community bind”, with citizens, shopkeepers, transport, police, for example, contributing.

The article on the BBC website about Norman McNamara (January 2012) predates the Prime Minister’s Dementia Challenge, (which started in March 2012.)

Any top down way of making bottom-up social groups ‘conform’ will be hugely problematic in the implementation of this approach to dementia-friendly communities, potentially.

The methodology of dementia friendly communities has to be truly inclusive: it is all or nothing.

I agree with Kate, and like her I wish to avoid protracted circular definitions of ‘stigma’. For me, I recognise stigma when you see it, like how the Supreme Court of the US recognises erotica and pornography as per Jacobellis v Ohio [1964].

It is possibly easier to define stigma by its sequelae, such as avoiding wishing to talk about dementia in polite conversation, or not wishing to see your GP about possible symptoms of a dementia in its early stages, or not wanting to socialise with people with dementia who happen to be in your family.

We know these are real phenomena, as demonstrated, for example, by the loneliness of many people on receiving a diagnosis of possible dementia.

And we know stigma can harbour deep-seated irrational prejudice, like the incorrect notion that dementia is somehow contagious like a ‘superbug’.

Stigma can be exhibited in pretty nasty ways in language: such as “snap out of it” or “victim”.

My discussion of whether people living with dementia are ‘sufferers’ tends to go round and round in circles with people who disagree with me.

Suffice to say, I agree it is possible for a person living with dementia, such as a person who has received a diagnosis of Lewy body dementia and who has to put up with terrible “night terrors” and exhaustion the following day.

I think if you live independently, but with full insight into your symptoms, it can be exasperating. I have never been in that position though, and it would be invidious of me to second-guess.

I think if you are close to someone in the latter stages of dementia, you can suffer.

But I’ve written about this all, indeed on this blog, before here.

The only thing that is new is Peanuts’ cartoon (original citation here).

In that workshop, I also sat through Joy and Tone Watson’s brilliant “Dementia Friends” session. Joy lives with dementia. And their session was brilliant.

This was the final ‘exhibit’.

I attended a special group session on stigma with Toby Williamson from the Mental Health Foundation during that day. In that session, it was mentioned that ‘rôle models’ of people living well with dementia might help to break down stigma.

Or maybe guidance for the media might help? One cannot help wondering if an article such as in the Daily Mail today might actually put off people from seeking a diagnosis of dementia (completely unintentionally).

But I did bring up something on my mind.

“Stigmata” literally means signs.

But dementia can be, like other disabilities, quite invisible.

Somebody might have insidious change in personality and behaviour, noticed by somebody closest to him or her, with no obvious changes in cognition (nor indeed in investigations).

I showed this in my paper published in Brain in 1999, currently also in the Oxford Textbook of Medicine.

The condition I refer to is in fact one of the more prevalent causes of dementia in the younger age group, called the “behavioural variant of frontotemporal dementia“.

If the signs are ‘visible’, then you are obliged legally to make reasonable adjustments for any disability. In England, this includes dementia under the guidance to the Equality Act (2010).

As Toby Williamson says, if you’re obliged to build a ramp for somebody in a wheelchair for a place of work, there’s an equal obligation to produce adequate signage for people who have navigation problems as a result of a dementia such as dementia of the Alzheimer’s type.

There are reams and reams of evidence on equality and the built environment (for example the Design Council or Commission for Architecture and the Built Environment).

I personally think it’s brilliant you can go into certain shops, and the customer-facing staff will, potentially, be able to recognise if a person does need time and space to pay for items.

This is also been tackled in the Scottish jurisdiction through Alzheimer Scotland.

Also, corporate lawyers should be advising large employers about the scope for unfair dismissal claims by people dismissed as they are about to arrive at a diagnosis of dementia (particularly young onset dementia).

The timeline is roughly this. Somebody has health problems – he or she is invited to leave and given a pay off – these health problems turn out to be a diagnosis of probable dementia – by this time the dismissal is not unfair.

I feel confident the ‘dementia friendly communities’ policy strand in England, and across other jurisdictions, is here to stay. I share, though, Kate’s concerns that about the relative ease with which this policy has lifted off, say, compared to how one might feel about ‘gay friendly communities’ or ‘black friendly communities’. One has to be extremely careful about any policy plank which alerts people to divisions, “them against us”.

This is what I know best as the “don’t think of elephants phenomenon” and then you think of elephants.

This policy, anyway, currently has huge momentum. Marc Wortmann is currently Executive Director of Alzheimer’s Disease International (ADI), the organisation providing a global voice for dementia and the founder of World Alzheimer’s Month. Wortmann has been instrumental in propelling dementia friendly communities to the foreground of world policy.

But, in firing up ‘dementia friendly communities’ (a term which I think is sub-optimal’), v 2.0, there is plenty of time to get it right.

The 24th Annual Conference for Alzheimer Europe put people with dementia in the driving seat. Deservedly so.

Shibley RahmanOctober 26, 2014 0 Comments

The biggest dementia conference to be taken place in Scotland (“Conference”, attended by 800 professionals, people with dementia and carers) was held in Glasgow last week (20-23 October 2014).

The focus of the conference was Dignity and autonomy in Dementia and the four day event explored in quite some detail how recognising the human rights of people with dementia, their carers, partners and families is key to ensuring dignity and respect, as well as overcoming stigma.

It was the 24th Annual Conference of Alzheimer Europe (@AlzheimerEurope, an umbrella organisation of 36 Alzheimer associations from 31 countries across Europe), supported this year by Alzheimer Scotland, .

The timetable was exacting.

The people there were very special; for example Tommy Whitelaw (@TommyNTour) mentioned in Alex Neil MSP’s speech at the conference. Tommy and Irene Oldfather (@IreneOldfather) happened to be passing through during one of my poster sessions.

And Beth Britton (@BethyB1886).

Well done to the conference organisers for putting it together, especially Gladwys Guillory.

The main conference hall of the venue, the Crowne Plaza in Glasgow, the Argyll Suite, was majestic.

I particularly liked the ‘live Twitter feed’ at the front of the hall, where curiously Kate Swaffer (@KateSwaffer) appeared many times all the way from Australia. Here I am appearing with my ‘selfie’, with somebody well known in the foreground of the photograph.

The relative failure of the medical model in addressing the needs of people with dementia and caregivers was a pervasive theme throughout the whole conference.

I had a nice chat with Marc Wortmann (@marcwort) over one of the lunches. Marc is in charge of all aspects of ADI’s work (ADI = Alzheimer Disease (and associated conditions) International; @AlzDisInt). Collaborating with the Board, Marc implements finance and campaign strategies.

Marc represents ADI at international conferences and in the NCD Alliance and takes part in WHO and UN meetings. I was also able to bump into Jean Georges (@JeanGeorgesAE), the Executive Director of Alzheimer Europe.

Cabinet Secretary for Health, Alex Neil, delivered a clear keynote speech to the conference at the Tuesday morning plenary session, in which he paid tribute to the immense contribution of Tommy Whitelaw.

Key to the event was the signing of the Glasgow Declaration: a commitment to promoting the rights, dignity and autonomy of people living with dementia across Europe, as guaranteed in the European Convention of Human Rights and the Universal Declaration of Human Rights.

Here’s a great slide of @alzscot‘s “PANEL” (pic taken by @LauraMcC86).

The satellite symposium sessions were well put together, and attracted substantial audiences.

There was an amazing moment when Agnes Houston (@Agnes_Houston), Chair Scottish Dementia Working Group, said to Helga Rohra (@ContactHelga), the Chair of the satellite session and Chair of European Persons With Dementia, “All we people with dementia need is a bit of help — AND A BIT OF TIME!”

A quotation from Agnes – from a previous conference – says it all for me.

The audience burst out laughing.

The reason for this is that Agnes had been originally timetabled to have more time for her slot, apparently.

As the conference was themed around the law, including human rights, invariably discrimination against people with dementia came up in various forms.

I asked about the topic several times.

One talk of the entire programme which I thought was truly outstanding was PL1.3. Gráinne McGettrick (Alzheimer’s Society of Ireland): The UN Disability Convention as an instrument for people with dementia and their carers.

In the English jurisdiction, dementia can count as a disability; therefore there are statutory requirements for ensuring dementia-friendly communities from employers. Also, unfair dismissal of a person on account of being newly diagnosed with dementia will clearly be unlawful.

A member of the audience politely pointed out to me afterwards that a person normally gets sacked first, and then gets his or her diagnosis of dementia confirmed much later, so at the point of dismissal the dismissal does not obviously appear unfair legally.

I found this observation incredibly insightful, as there have been thus far no ‘test cases’ of unfair dismissal on grounds of a diagnosis of dementia in the English jurisdiction.

I had brought along my book ‘Living well with dementia’, but I rarely got a chance to read (or refer) to it during the course of the whole week!

I asked several times why there is no representative of persons living with dementia or caregivers on the World Dementia Council (@WorldDementia). The background to this fiasco is explained here.

I had designed that I would be staying in the same competitively-priced hôtel as Jayne Goodrick (@JayneGoodrick) and Chris Roberts in Glasgow for the 24th Alzheimer Europe conference held in Glasgow, the city where I was born.

It was by chance we gave a lift to Dr Ruth Bartlett (@RuthLBartlett) to the conference venue. Ruth was staying, as it turns out, in the same competitively-priced hôtel.

Ruth is of course well known for her well respected contributions about the citizenship of of people living with dementia, and how this has influenced the ‘involvement’ of people with dementia in policy.

This was us just before the opening ceremony – when we were full of energy.

I really enjoyed speaking with Geoff Huggins (@GeoffHuggins), who gave an excellent speech in the opening ceremony.

I presented my talk on how dementia healthcare would not be best served by a private insurance system, because of the potential problems of ‘moral hazard’ and genetic discrimination.

This talk was, overall, well received.

I was particularly pleased with the wide-ranging, excellent discussion we had after my talk. Thanks especially to Amy Dalyrymple (@Amy_Dalyrymple), Head of Policy for Alzheimer Scotland, whose contributions in all areas of policy were particularly interesting. The work currently being implemented in Scotland represents a culmination of very high quality inclusive work through a number of different stakeholders.

I was also honoured to present two further research posters, which I had co-authored on the perception and identity of the G8 conference.

Chris Roberts (@mason4233) helped me with the poster session. It was in fact Chris who identified that the phrase “living well with dementia” was not used even once in the top 75 web articles on #G8dementia on Google, in about 44000 words odd.

All around the conference were people whose work is directly relevant to my book: for example Silke Kammer – on the arts and music – and Emma Killick (@RealEmmaKillick) who at the excellent MacIntyre leads on children and adults with learning disabilities and/or autism, but is clearly passionate about people with learning disabilities who later have further unaddressed needs on receiving a diagnosis of dementia.

It was terrific to bump into followers everywhere I went. It was great to meet Julie Christie (@juliechristie1) for the first time, whose work on resilience I am much interested in. It was also lovely to see Anna Tatton (@annatatton1) doing so well.

I am well aware of why the Scottish dementia nursing strategy, some say, has become the ‘envy of the world’. It was a huge privilege to meet in person Janice McAlister (@JaniceMcAlister), who was BJN Nurse of the Year Elderly Care 2013. In addition, I found the presentation by Hugh Masters (@HughCMasters), Associate Chief Nursing Officer for the Scottish Government, interesting for insights as to how England might improve its service too.

I happened to meet in the foyer of the Crowne Plaza on Monday night Ann Pascoe, @A_Carers_Voice, somebody who I have not only liked a lot on Twitter, but whose work on rural ‘dementia-friendly communities’ I have massively respected for some time.

Likewise, it was really nice to catch up with Caroline Bartle (@3SpiritUKNZ), who very kindly once did an infographic of my book ‘Living well with dementia’.

I met in the poster session Prof Mary Marshall to whom the Stirling School in design in dementia owes a huge amount. I owe a huge amount to Prof Marshall too, as the Notting Hill masterclass which I once attended got me first interested in this subject a few years ago (I had a long chat with Prof Marshall there.)

There were not idle tokenistic sops to people living with dementia, and their closest ones, in the whole conference. They were at all times integral to the fabric of the conference.

For example, the seating arrangements in the main Argyll conference suite reflected the special respect given to people with dementia and those closest to them.

The substance of the conference for the most part was of an exceptionally high standard in policy; there was next to no shilling of commercial projects.

The work from Alzheimer Scotland (@alzscot), including, predictably, the work focused on autonomy and dignity, and human rights, was showcased in an impressive way. Their work hangs together as a coherent, forceful narrative of meaningful significance for the Scottish jurisdiction.

It also has clear implications for how England conducts itself south of the border, notably, for example, in a right to timely diagnosis, and a right to timely care and support (including proper coordination of care and support).

In common with Scotland, England is trying to tackle hard the inappropriate use of antipsychotics. Dr Karim Saad (@KarimS3D) gave an excellent talk on this subject, drawing on recent findings from the ALCOVE2 study.

Scotland, in fairness, seems to be having less trouble with its policy than England is.

There was a very good sprinkling of cutting-edge research relevant to all practitioners in the field.

For me, the conference had the feeling of a happy wedding without any of the arguments.

Here are Agnes and Donna.

Whilst originally ‘unkeen’, I ended up having a wonderful time at the “Gala Dinner”. The entertainment – traditional Scottish music and dance – was amazing.

I was able to chat with Agnes and Nancy for some time. What a joy.

Elaine Hunter (@ElaineAHPmh) gave an excellent presentation on the transformative changes which had happened around the workforce in Scotland, including leadership from allied health professionals.

Without doubt, a skilled workforce for the provision of dementia services is essential, not gimmicks.

I consider Helga to be a true friend too. Meeting Helga was akin to being wowed by Lady Gaga.

I had last felt like this when I met Norman McNamara (@norrms) at the Queen Elizabeth II centre in London, Westminster.

I learnt a lot from the all-day workshop on building dementia friendly communities.

Over lunchtime, Joy Watson gave a brilliant ‘Dementia Friends’ (@DementiaFriends) session. I, in fact, was total awe as I am also a ‘Dementia Friends Champion’, and discovered many tips how to run my sessions in future!

This is a brilliant film exhibiting the passion which Joy puts into her Dementia Friends sessions.

Karishma Chandaria (@Karishma1000) chaired this exceptional day’s workshop, called a ‘masterclass’ on dementia friendly communities, which indeed mentioned the code of best practice for dementia friendly communities currently under consultation.

Chris Roberts made time to hand out flyers for membership of the ‘Dementia Alliance International‘, an unique campaigning group run wholly by people living with dementia.

This Conference mapped topics clearly onto people living with dementia and caregivers, for which the organisers of this event must be heavily congratulated.

Next year’s Conference will be in Slovenia. I’ll be there! Bring it on!

My research on #G8dementia and on markets for the @AlzheimerEurope conference 2014

Shibley RahmanOctober 11, 2014 1 Comment

I will be presenting two posters on attitudes amongst the general public towards the ‘G8 dementia’ event as it was then.

I was aghast that out of 75 web articles that the phrase “Living well with dementia” wasn’t used once.

There was a huge bias towards the medical model of dementia. Respondents overwhelmingly felt that the major beneficiaries of that event were large charities, politicians and Pharma, and the people who benefited least were the actual persons living with dementia and caregivers.

I am honoured to give one of the oral presentations.

Information asymmetry between insurance provider and person is a big source of problems. I will showing preliminary data that the two phenomena “moral hazard” and “adverse selection” are likely to be demonstrated in attitudes of people who had received a genetic diagnosis of dementia.

However, I will be raising awareness of the danger of a policy based purely on genetic risk and private insurance; without safeguards against genetic discrimination, such a policy would be likely massively to disadvantage individuals with a higher family-based risk of dementia.

I am hugely grateful to my Twitter followers for taking part in my online surveys.

I am, finally, hugely grateful to the individuals living with dementia and caregivers, as well as other members of the public, who continue to drive the work that I do in dementia.

Developing an enhanced person-centred speech and language service for persons living with PPA dementia

Shibley RahmanOctober 10, 2014 1 Comment

Ravel, composer of ‘Bolero’, who died in 1937, is thought in retrospect to have lived with PPA dementia.

The direction of travel is to develop a person-centred service for people living with dementia and their closest including primary caregivers.

There is still much interest in demonstrating beneficial outcomes, despite the scarcity of resources.

Reports are currently that speech and language input not only can improve communication in people living with PPA, but can improve wellbeing for all involved.

The current NICE guidelines (2011) make it clear that speech and language therapists have a vital role in assessment and management for people with communication difficulties as a result of dementia.

Yesterday, it was very nice to go to the PPA Support Group, this time hosted at UCL off Gower Street.

I was there with my friend Charmaine Hardy whom I had first met on Twitter through Beth Britton.

The “team” is here.

(Picture by Susie Henley.)

Members of the Queen Square cognitive disorders service are known to me.

Giovanna Mallucci, Jason Warren and Nick Fox were all my Specialist Registrars there – on Prof Martin Rossor’s firm – when I was the equivalent of a FY2 Doctor more than a decade ago. They now are all currently Professors (Jason and Nick at the National Hospital for Neurology and UCL Institute of Neurology).

I had a long chat with Katy Judd, the highly experienced specialist nurse on this firm. I have memories of Katy being completely wonderful. And she was wonderful yesterday. For me, there was a huge deal to catch upon.

The PPA newsletter, containing details of their activities, is here.

Anna Volkmer is a specialist speech and language therapist, from the prestigious South London and the Maudsley NHS Trust.

(Picture by Charmaine)

Anna is on a crusade to go from raising funds for much needed research to developing an innovative, and very much needed, service.

Anna gave a very clear presentation of her research looking at the efficacy of therapy techniques in PPA. A questionnaire survey had revealed that there was much interest in local specialists.

Sessions before the therapy were recorded. Each session was about one hour long.

The aims of therapy for each person and caregiver were different and tailored to the individual.

For example, Anna gave an example of Mr and Mrs G. Mrs G had reported much frustration with her difficulty in communicating, and her perception that Mr G ‘didn’t wish to listen any more’.

Persons with dementia (Frontotemporal Dementia- Primary Progressive Aphasia type) who have been assessed by the St Thomas’ memory clinic team (in the South London and Maudsley NHS Trust) and been referred to a highly specialist speech and language therapist.

The evidence to date had suggested that single word therapies focusing on rehearsal and semantic tasks are most likely to support maintenance of communication for people with PPA (e.g. Jokel, Rochon & Leonard, 2006).

Intervention focused on identifying communication breakdown between the person living with PPA and their communication partner using video-feedback.

One member of the audience described how he had accompanied his wife, living with PPA dementia, to a specialised speech and language unit in Chicago. This unit is apparently world-renowned, known to Anna. The delegate’s experience had been extremely positive.

Anna will be presenting at the British Aphasiology conference later this year, and has a long standing interest in PPA , having written and published on the subject.

Anna’s book on PPA – which she mentioned in the Q&A session – is here.

We then sat around in round table discussions, focused around subtypes of PPA.

Charmaine and I were on the ‘logopenic PPA’ table.

The initial characterisations of a “logopenic” (from Greek, meaning “lack of words”) presentation of PPA described an overall paucity of verbal output, with relative sparing of grammar, phonology, and motor speech,

More specialised information about this type of PPA – meant for a specialist audience – is here.

We discussed various aspects.

One was how it would be a great idea to involve friends or family early on, to help with communication with services from an early stage.

We also discussed how good it was to capture communication intervention techniques on video, so that analysis could also be conducted for non-verbal communication.

We discussed how both hospital and bome settings could be useful for such ‘roll out’ of the service. More research was needed how many sessions there could be, what the time intervals between each session might be, and how early on in the condition the service should take place.

A number of families had had access to speech and language services. The ‘quality’ of such services varied in style and content.

It was observed that speech and language therapists often were keen to administer tests rather than to build up a person-centred or relationships-centred rapport. However, Charmaine Hardy described how her husband had been investigated using an extensive biography approach. Charmaine is on Twitter (@charbhardy), and her profile states indeed her husband, whom she cares for too, lives with PPA dementia.

We talked about how the numbers of people living with PPA dementia were few in number in disparate localities, but how expertise could be pooled for the benefit of persons and families. Our group felt that a coherent PPA information provision, strategy, perhaps organised in both a generic and an individualised person-centred way, could be enormously helpful in service provision.

It was felt that one hour was long, possibly a bit too long provided there was an adequate number of ‘breaks'; but delegates on my table emphasised that each person was different.

References

Jokel, R., Cupit, J., Rochon, E. and Leonard, C. (2009) Relearning lost vocabulary in nonfluent progressive aphasia with MossTalk Words. Aphasiology 23 (2) 175 -191.

National Collaborating Centre for Mental Health commissioned by the Social Care Institute for Excellence National Institute for Health and Clinical Excellence (revised 2011) CG 42.

Is there more to influencing English dementia policy than putting up a poster?

Shibley RahmanOctober 5, 2014 1 Comment

Now is the time to influence the new English dementia strategy. It is critically important that the informed opinions of a diverse group of stakeholders are involved in framing this policy.

As with any strategy document, it will be hard to be in full control of all of the facts and evidence, but I feel it’s very important that the views of people living with dementia are taken into account. This is not just a case of ‘involving’ people living with dementia where possible. It’s a case of allowing people living with dementia to lead in framing the narrative. I am not going to suggest what these topics might be. I think, for people with more advanced dementia, it is going to be important to listen to the views of carers, both unpaid and paid. There is currently a huge policy problem that the needs of carers themselves are unaddressed. Carers need to be better supported in a more structured way.

There has also been a problem rumbling on years: that people who’ve received a diagnosis of dementia are not signposted to appropriate services. While the job description of ‘dementia adviser’ was mooted, I don’t feel this goes nearly enough. The ‘Dementia Challengers’ website, through amazing personal efforts from its one-person designer who has personal experience of this field, offers useful leads on support for making informed choices for living well with dementia. There is no escaping the overwhelming desire, also, to see a system of specialist nurses participating in a care system. Also, we are not making use of the substantial expertise of social work professionals. For issues such as advocacy over capacity and liberty, there are certain people with dementia who need to have equitable access to such resources.

I am a card-carrying signatory that each person living with dementia has an unique experience. I’ve even written a book on it. But it might help people with certain types of dementia to be reassured that there are clinicians with expertise in dementias, and can promote certain support groups (such as the excellent PPA Support Group). We need any diagnosis of dementia to be correct. I too often hear of people being given a diagnosis from somewhere, on the basis of a very scanty work-up. I understand the concerns that too many people are being denied of a correct diagnosis, but we must ensure that this part of the system is adequately resourced. It is possible there will be a breakthrough in drug development for the dementias in the near future. I wish the people working on this well. I am sure that they will not wish resources to be diverted disproportionately into this away from current care, or making it appear that the current living well of people with dementia is less of a priority?

The ‘dementia friendly communities’ policy plank is potentially fruitful. However, I think we should address how we hear a lot from corporates, but not much, in this jurisdiction, from professionals and practitioners who could be useful members of that community. Under the current legislative framework, both in domestic and international law, the rules of equality and human rights apply. These are not issues only for the ivory towers. They have direct relevance to the person with younger onset dementia who finds himself in an unfair dismissal situation. They also have relevance to the person in the badly run care home who feels (s) he is subject to “degrading treatment”. Access to the law has been a real setback for the current Government, as has been access to see your GP. These create the perfect storm for a ‘dementia unfriendly community’.

I am the last person to denigrate the efforts of the vast army of people putting up posters, signing petitions, or handing out leaflets, in the name of ‘dementia awareness’. There is a huge danger that these posters, petitions and leaflets send out a message of ‘mission accomplished’, if there is no follow up? But I am likewise a bit burnt that the fact that #G7dementia and “Prime Minister’s Dementia Challenge” appeared from nowhere, and had the effect of threatening plurality in the dementia third sector. I am concerned about this, and now is the time to make views known to the Baroness Sally Greengross, Chair of the All Party Parliamentary Group, Prof Alistair Burns, the clinical lead for dementia in England, and Prof Martin Rossor, lead for research for dementia for NIHR.

Presentations by Shibley Rahman at the Alzheimer Europe conference 2014 on autonomy and dignity

Shibley RahmanSeptember 28, 2014 0 Comments

This year’s Alzheimer Europe conference is on ‘Autonomy and dignity’ between 20-22 October 2014.

I think it is timely that this conference is taking place at this important stage of the development of English national policy.

The direction of travel is a fully integrated health and care system, where people are signposted to information quickly and can make appropriate decisions.

The person living with dementia must come first; but we are also moving to a situation where a number of different people, such as friends, family, unpaid caregivers, paid carers, social care practitioners or nurses, might help to influence a personal care plan.

Ideally, a person living with dementia will be given in the future good care and support, in accordance to his or her known wishes, from the point at which a correct diagnosis is made.

Autonomy is part of the medical construct for ethical behaviour; beneficence, justice and non-maleficence are critical too.

With the ideal of autonomy, it’s vital that no ‘coercion’ takes place for people with dementia who are able to make autonomous decisions.

There should never be an illusion of people living with dementia where they are able to make decisions, when those decisions are clearly made on their behalf.

Dignity is pivotal to all dementia policy in England, and the law must be robust in safeguarding vulnerable people too.

I am looking forward to presenting two posters on language and the perception of #G7 dementia.

I am also privileged in that I have been chosen to present one of the few oral presentations. I am doing on this on the future of healthcare systems for dementia in England, arguing that policy aims, in particular universality and equity of access, will not be satisfied from a private insurance market.

I will be joined by my close friends Jayne Goodrick and Chris Roberts.

[photo by kind permission of Chris R]

Please feel free to consider the research I’ll be presenting on behalf of myself, Kate Swaffer (living with a dementia and student at the University of Wollongong), Dr Peter Gordon (Consultant Psychiatrist), Simona Florio (Healthy Living Club, Stockwell), and Prof Facundo Manes (Chair of Behavioural Neurology, University of Favorolo, Buenos Aires; Co-Chair for research in dementia and aphasias for the World Federation of Neurology).

Private markets vs universality (oral presentation)

Language used in media presentation of the main #G7dementia event held in London

Perceived functions of #G7dementia

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