Policy

Living with dementia: Chris’ story

Shibley Rahman 1 Comment

There’s a new Xbox game called ‘Grabbed by the Ghoulies!”

In this game, a young boy named Cooper and his girlfriend, Amber, are seen searching frantically for civilisation after they take a wrong turn. They are caught in a storm and head to a nearby mansion to seek shelter. Once outside, Cooper checks his map, but is unaware that someone is watching. Baron von Ghoul, the game’s main antagonist, looks down from his window and orders two gargoyles to retrieve Cooper and Amber.

‘Ghoulies’ is a term referring to a part of the body, colloquially and affectionately, affected when ‘hit in the groin’.

A diagnosis of dementia should never been given to the recipient of the diagnosis alone. Many have described the news of a diagnosis as worse than a ‘kick in the groin’. In fact, Chris Roberts, living with a mixed Alzheimer’s and vascular dementia, has mentioned in public how his own diagnosis was disclosed to him on a busy clinic day, with somebody knocking on the door asking if the room was going to be free.

If you ‘believe in’ person-centred care, you believe that care should be person-centred including at the point of diagnosis. This means that the diagnosis is given in a ‘timely’ way, taking on board the diagnosis recipient’s beliefs, concerns and expectations. The term ‘early diagnosis’ is not actually that helpful in this context, as, as such, a diagnosis of dementia of a rare genetic mutation could in theory be conducted in someone’s womb.

Knowing the context of someone’s life is incredibly important for gauging how he or she might react to that diagnosis. A correct diagnosis of dementia is a big deal, but what is often forgotten is that after the diagnosis you might have on average eight years to come. The figures vary in fact – Chris and I both know people who’ve had from two to at least sixteen years.

But the point is this. Irrespective of the current situation with ‘cures’ and ‘treatments’ for dementia per se, it’s the case that ‘dementia tends not to travel alone’. A person with dementia being admitted to hospital is likely to live with numerous other conditions, and be on the receiving end of numerous pharmacy prescriptions.

A person with dementia is an individual with a name, beliefs, concerns and expectations, and unique identity. His or her friends or family can end up being pivotal in a caring role, and, following diagnosis, the aim should be fully to enable and protect that person to live life with dementia to the full.

Whether or not the diagnosis and what follows happens in primary or secondary care, people living with dementia are entitled to the very best outcomes in health and social care. Indeed, most of the ‘suffering’ for people with dementia and carers can come from the devastating cuts in health and social care budgets.

Following the Prime Minister’s Dementia Challenge, England is in a hugely better place with dementia inclusive communities than before. Dementia is actually a disability under current equality legislation in force, and people with dementia are worthy of ‘reasonable adjustments’ just as in a physical disability. But it is important likewise to realise that a person with dementia has a unique set of positive skills and abilities too at any one particular time; this approach is known as ’embracing neurodiversity’.

What will happen on Thursday in the flagship BBC series ‘Panorama’ is Chris’ story. The title reflects correctly the notion is that this programme is not a definitive guide to living with dementia for everyone. Everyone has different unique experiences.

But this is Chris’ story. Chris was 50 when diagnosed with young onset dementia. He used to run a successful motorcycle shop, and had a young family. I had the pleasure of going on holiday and to the Alzheimer’s Disease International conference in Perth, Western Australia, last year with Chris, Jayne and Kate.

I strongly recommend their story to you. I have no idea what’s in it.

Labour peer Lord Mandelson said famously once, ‘I’m a fighter, not a quitter”. Whilst I don’t particularly like aggressive battle analogies such as ‘the war against dementia’. I think this unique documentary will also share a sense of the grit and optimism of Chris and family, as well as their to-be-expected fears of the future.

I have a philosophy that ‘anything can happen to anyone at any time’ – and as such it’s not how you fall, but how you get up again, which is the true measure of you. I think how Chris and family have taken head-on his diagnosis of mixed dementia will be informative and educational for many, not least for members of the medical profession whose ability in this area could itself be much improved.

 

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The biggest risk is the future

Shibley Rahman 0 Comments

Steve Hilton

As the neverendum talk perhaps is beginning to wind up, both sides in the European referendum debate are getting their closing speeches to invite you to use your vote in the UK to decide on EU membership.

This week, it was a chance for Steve Hilton, former advisor to the current Prime Minister David Cameron MP, to trot out the standard Brexit arguments. One of them, he emphasised at one point, is: “The biggest risk is the future.” I politically have much more in common with Steve Milton from Innovations in Dementia – though that other Steve isn’t fond of Mr ByeRight T-shirts.

Of course, it is impossible to make the future fool-proof. Dementia is the most feared condition in adulthood, it appears, and it is standard practice for national and international Big Charity to prey on this fear to raise funds. This shock doctrine, in combination with the “one last push” from tabloids such as the Daily Express, is only let down by the harsh reality of the actual scientific evidence.

This negative result about bapineuzumab for mild to moderate Alzheimer’s disease in two global, randomized, phase 3 trials, for example, was only published officially about a fortnight ago.

sneaked out

But the mood music of the press release about this drug from the Alzheimer Association in 2012 was somewhat different. Money is incessantly being pumped into this particular area in dementia.

As the Alzheimer Association press release says,

“The urgency is clear. By midcentury, care for people with Alzheimer’s will cost the U.S. more than $1 trillion every year. This will be an enormous and unsustainable strain on the healthcare system, families, and federal and state budgets. Better treatments and prevention strategies are absolutely necessary to reduce the financial and personal toll the disease takes on individuals, families and the healthcare system now and in the immediate future.”

Big Charities deliberately ramp up the fear to encourage you to fund raise for dementia. This is particularly unfortunate in the UK where a big ‘cure for dementia’ has actually not been forthcoming, whereas social care and intermediate care funding have been on its knees meaning that many adult patients cannot get discharged in a timely way from acute hospitals. This predictably is ruining the patient and carer experience for many. It’s been estimated that 30% at least of all adult admissions for medicine involve someone with dementia.

The fear of the diagnosis can mean that someone, or his or her own friends and family, might delay seeking out an official diagnosis of dementia. I feel, however, there has been a substantial, if not complete, turnaround in societal attitudes towards dementia in England through initiatives such as ‘Dementia Friends’ from the Alzheimer’s Society. But national campaigns are unable to eliminate stigma, prejudice, discrimination and outright bigotry.

Closing the diagnosis gap was not simply down to a reluctance of general practitioners to diagnose dementia, although general practitioners were often blamed publicly for this. Alzheimer’s Scotland at the beginning of June are about to debate whether diagnosis and management for dementia should take place in primary and secondary care, but the mere title of this debate is a huge insult to patients. Patients should be able to choose the venue of where this discussion takes place – it should be beyond the power of professionals to choose where this diagnosis and post-diagnostic support takes place, whatever the actual answer to the question might be.

Take for example the 430,000 people living in care homes. A substantial proportion of them will be living with a dementia such as Alzheimer’s disease, and it would help to meet their care needs if a carer knew this. For example, a care home resident may not be able to remember some interactions he has had with a carer, or may not be able to remember whether he has taken his medication that morning.

Or, take a frail lady who falls over with a subsequent acute admission to a NHS hospital. She might be given a CT scan showing volume loss of brain, and with a background of blood results not explaining cognitive problems and a history of worsening memory problems, and it might be a case for a diagnosis of dementia to be approached.

Courage to face one’s fears is a pervasive strand, whether you’re a recipient or provider of care services. Courage involves making a decision, often in the face of some fear, about the future. Indeed, cognitive neurology research has now consistently shown that one of the cognitive symptoms of people with dementia might in fact be a lack of awareness of problems, or indeed a specific lack of ability to predict forward into the future. This interesting phenomenon is called ‘prospection‘, and future research into this area would be valuable.

So, I feel Steve Hilton is right in the sense that the ‘biggest risk is the future’. But having a diagnosis of dementia is ‘not a death sentence’, in that many people with dementia can live as well as possible for many years with the right care and support. Planning might not just be in care but also in financial and legal affairs. It is said that facing the future is easier in dementia once you finally have an explanation, such as for worsening memory problems. But dementia is not just about memory.

A big risk for people with dementia ‘suffering’ is people with dementia suffering from never-ending cuts to the NHS and social care. That is the reality of the situation, and it is time Big Charity campaigned on that too. Disappointingly this week, there was no representation of people living with dementia giving a talk at the global #WHA69 summit, although they was no shortage of the usual hobnobbers bigging up the successful political leadership. But it’s worth noting that some people would not have had ‘seats at the table’ at all had it not been for certain people with dementia who had put them there.

 

 

Embracing diversity is a crucial step in breaking down stigma for dementia

Shibley Rahman 0 Comments

brain

A curious thing happened when I was taking a taxi back home from the Royal Free Hospital in Hampstead. The taxi driver, somebody I first met several years ago in fact, reminded me that he is a father of two children living with autism. But he presented the information as if he was telling me some catastrophic news.

I have kept in touch with Prof Simon Baron-Cohen’s work, as Director of the Autism Research Centre at Cambridge, not least because Simon was my first ever supervisor there. I did a study with him on the genetics of synaesthesia, a condition where a person might see a colour in his mind’s eye on hearing a word.

Baron-Cohen has advanced the approach that people living with autism, whilst poor at empathy processing, tend to be very good at big picture systemisation planning. People with autism can flourish in highly mathematical and technical disciplines. Einstein, it is remarked, was poor at interactions with other children once and exhibited a symptom called ‘echolalia’ in speech, which can be a symptom of autism.

Dementia is an umbrella term referring to more than a hundred different conditions of the brain which can produce cognitive and behavioural symptoms over time, not just in memory. But imparting the diagnosis of dementia embraces the ‘cliff edge’ nature of dementia – that one moment you might not fit the diagnostic criteria, the other moment you do. Therefore, ‘having dementia’ is an all or nothing phenomenon, and has a sense of finality.

This sense of finality, however, can be very destructive. Kate Swaffer, Chair of Dementia Alliance International, has described the impact of the diagnosis as a disempowering experience. Many people with dementia experience social isolation and loneliness on diagnosis. As a likely result of the stigma of the diagnosis of dementia, dementia has become one of the most feared conditions in adulthood.

But I feel dementia inherently can be thought of using an approach of ‘neurodiversity’. Whilst dementia is not a mental illness, but rather a condition of the brain, we are acknowledging the diverse aspects of mental function already say in ADHD, autism and schizophrenia. Neurodiversity is a phenomenon akin to biodiversity, of species with varying adaptive traits, and the broad range of neurodiverse phenotypes makes as a whole a resilient population.

It is a matter of speculation what dementia might be adaptive for, but, people with ADHD, with distractibility and hyperactivity, might, theoretically, exhibit traits which are adaptive for the hunter-gatherer population.

I feel as another Dementia Awareness Week draws to a close that we are in a much better place with dementia than where we were only a few years ago. People on the whole are no longer ashamed to be living with dementia. As Dr Jennifer Bute said in a BBC programme last week, it’s not the challenge itself of interest of the diagnosis of dementia, but the personal reaction to that challenge.

This has led to a situation where people with dementia are respected for what skills and lifelong experience and wisdom they can bring to the table. This strength based approach is fundamentally different to the one which purely focuses on deficits.

I have no doubt, personally, that an approach which emphasises human rights for people living with long term disabilities is a right one. The UN Convention on Rights for People with Disabilities, whilst not explicitly mentioning dementia, clearly is supposed to embrace conditions such as dementia.

It is right that if a disability in cognitive function is identified it should be rectified through some sort of adaptation or adjustment. That is the purpose of the “PANEL” human rights approach globally, which implements equality non-discrimination and accountability.

But gone are the days when one size fits all, and that’s where the “neurodiversity” approach, celebrating skills and abilities as well as disabilities, comes in. I feel that embracing diversity of all people, in an inclusive way, is necessary and sufficient for breaking down stigma.

It is intuitive that we don’t want a population where we rank people on how fast they get to the same solution, even though this is what academic assessments at school and university appear to do. We should, instead, be encouraging a society where people can legitimately offer different things. This is not a question of ‘all shall have prizes’, but rather adopting an approach where success builds on success.

And if someone’s cognitive profile changes, that person with dementia should have inalienable universal rights to ensure that he or she can live as fulfilling life as possible. It is worth noting that this approach is entirely valid irrespective of whether a cure for dementia is found before 2025.

If we’re ‘curing’ Alzheimer’s disease, can we ‘solve’ delayed discharges too?

Shibley Rahman 0 Comments

Cambridge-University-Senate-House

The famous ‘Two cultures’ speech was delivered in 1959 at the Senatre House in Cambridge by CP Snow, controversially on the growing schism (growing since the Industrial Revolution, at least) between the arts and sciences.

Coincidentally, 37 years later, I did finals in the same location in neuroscience for my Bachelor of Arts degree, with a mind to do a PhD in young onset dementia at Cambridge (which I then did).

I was really struck by the “two cultures” yesterday. In an ideal world, we shouldn’t have to fight about it – but as some will tell you on one particular political side, money does not grow on trees, but curiously there always seems to be enough money for certain types of research.

I found the Horizon programme on a cure for dementia good in as far as it went. It wasn’t really on a cure for dementia, but mainly an advert for some grant programmes in biomedical research in Alzheimer’s disease.

Nick Fox, now a Professor at Queen Square and Director of the Dementia Research Centre there, but who was getting towards the end of his protracted time as Specialist Registrar to Prof Martin Rossor when I was a junior there, explained how voxel based morphometry (specialised brain scanning) could be used to confirm a case of posterior cortical atrophy, previously undiagnosed.

The pitch though was entirely to miss the point. It would have been much more helpful to know what the precise rehabilitative offering for the patient with posterior cortical atrophy was – the patient himself described his own vision as “a jumble” in his own words.

There was hurried talk of tau markers in the cerebrospinal fluid. But a lumbar puncture is an invasive procedure. And a cure which could stop the building up of toxic tau would have been useful to discuss, but Fox totally skirted around what the benefit of his hard won diagnosis was.

If you take the view that the precise name of the dementia is relevant, but the dementia is merely a pathological description of a buildup of tau in the brain somewhere, that helps you with your sledgehammer approach of taking an anti-tau drug forward. Then it means Fox should have entered into some sort of debate as to whether we are all ‘tauopathies’ now, ranging from Alzheimer’s disease, to frontotemporal dementia or posterior cortical atrophy.

Does this make the underlying genetic basis irrelevant? I think somewhat the arguments that posterior cortical atrophy is a variant of Alzheimer’s disease have always been rather anaemic, without reference to why there is such selective neuronal degeneration in the visual parts of the brain, and without reference to the underlying commonalities in genetics basis.

But the problem for Fox with his ‘dementia can be spotted now a decade before symptoms approach’ is the lack of answer to what proportion of people with slightly aberrant brain scans or markers, at what time, would be taken forward for a possible therapeutic treatment.

We saw elsewhere a different person, made patient, through apolipoprotein genotyping, who had become quite distressed about the lack of genetic counselling.

The actual situation for Fox is that there are hundreds or thousands of neurologists or general medics who do not even know what the clinical presentation of posterior cortical atrophy is, so it is no wonder that such patients both here and abroad get taken round the houses, invariably through an ophthalmologist or eye clinic, over years, prior to a diagnosis.

The programme was predictably full of ‘sufferers’ and ‘devastating’, shock doctrine stuff, rather than ANY acknowledgement of any people with dementia leading fulfilling lives. I don’t have any ideological problem with people crying on TV as it represents an authentic emotion.

The narrative however was fraudulently set up as an epidemic of dementia – despite the fact it is now widely conceded that the prevalence of dementia is falling – and here’s the sunny uplands of cure to solve everything. It was good to see cognitive neurorehabilitation get a mention though, even though it was essentially bordering on window dressing.

Quality of care research would be desirable too, as well as good quality of life research.

This was yesterday’s headline in the Times.

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The problem was made more graphic with genuinely horrific stories from the Health Ombudsman’s report on poor quality of elderly hospital care, focusing on delayed discharges. But the data hailed from 2014/5, that’s a good two or three years after the Prime Minister’s Dementia Challenge, one year prior to the Prime Minister claiming he wanted the UK to be ‘the best country to have dementia in by 2020′ in a completely deluded manner, with social care funding on its knees.

The social model of disability correctly admonishes calling all people with dementia as ‘sufferers’ or ‘victims’, but rather holds them to be active participants in citizenship with fundamental human rights, such as a right to dignity. And yet another costly report has shown what we knew already – of people languishing stuck in hospital, who cannot be discharged. We knew all this prior to the last general election too. People have sadly suffered at the hands of the NHS and social care due to mismanagement.

Don’t get me wrong. Biomedical research is important. I followed the tweets from the British Geriatrics Society conference, and one of the tweets involved somebody with dementia who had entered into a coma due to a drug prescribed for delirium. This example shows why it does matter to diagnose some types of dementia (diffuse Lewy Body disease), and the need for clinicians to recognise delirium superimposed on dementia.

A cure for dementia before the onset of symptoms would be remarkable, especially for some rarer young people who face a near-certain likelihood of developing one of the strongly inherited dementias.

But we DO need to face facts, Dementia Awareness Week or otherwise, surely? If we’re ‘curing’ dementia really by focusing on a handful of manageable subtypes such as familial Alzheimer’s disease only, can we ‘solve’ inequitable delayed discharges too for an increasing number facing Jeremy Hunt’s NHS?

 

 

A quick word about my campaign ‘Dementia Rights’

Shibley Rahman 1 Comment

Dementiarights

I intend to launch a campaign called ‘Dementia Rights’.

But I should like to say a few words.

I do not wish to give the impression that I am campaigning on behalf of people with dementia on this. This would be to overrule every instinct I have on this. I have always believed that people after a diagnosis of dementia need to be leading on campaigns themselves. What I have found a bit annoying is some people using people with dementia to further their own script. Like an authentic newsreader.

For this reason, I have decided to time the launch of this at an appropriate time in relation to the Dementia Alliance International (DAI). I think the primacy of their work is paramount. With Dementia Awareness Week in the UK coming up, I’d like to ensure that the spotlight is shining on the right targets. I will be supporting ‘Dementia Friends’ as a Dementia Friends champion as usual.

I part company from the ‘Dementia Friends’ initiative a bit in that I feel the campaign caters well people for people who do not have dementia, and unwittingly produces a ‘them against us’ situation. I find the word ‘friends’ a bit patronising, but I know no malice is intended. It reminds me of ‘Does he take sugar?’ – that’s all.

This morning I was asked to discuss about the use of the hashtag ‘#DementiaRights’ not from anyone I work with usually. The criticism is that human rights are universal and therefore should not be constrained for people with dementia. This is of course correct, and it is an argument I have made myself indeed. But on the other hand I do think for too long, as a person outside of the community of people living with dementia, that the rights of people with dementia have been somewhat ignored – take for example the primacy of the ‘dementia friendly’ (rather than ‘dementia inclusive’) approaches, or the inability to segregate carers’ rights from the rights of people living with dementia. I should like to emphasise that carers’ rights are extremely important too for distinct reasons.

I will not be flogging ‘Dementia rights’ to any commissioners. I will make the materials freely available for anyone to use. Money will not be involved in any way. I am very irritated as you know with dementia being exploited for commercial gain.

The material of ‘Dementia Rights’ will not be confined to any particular geographical jurisdiction.

The format of ‘Dementia Rights’ will be, like Dementia Friends, a public awareness session given by anyone. It will have five key themes, and will be built around various activities and an original analogy of mine to explain human rights.

The aim of this initiative is to bomb policy with rights-based advocacy, and to get people talking about dementia rights. I don’t have the infrastructure of Big Charity, or the resources, but never deny the good which can be done from small acorns, to corrupt a Margaret Mead quotation often used by DAI themselves.

The human right not to be drugged up to the eyeballs

Shibley Rahman 0 Comments

supertanker

I remember once being told that an “alcoholic” is uomebody who drinks as much alcohol as you, but somebody you don’t particularly like.

Culture has an odd way of inflicting labels on people it doesn’t particularly respect. This can be done for entirely political reasons – a need to place a ‘them against us’ division, like the term ‘benefit scroungers’ for people who cannot find gainful employment.

I remember when I went to the Alzheimer’s Show last year, and a senior consultant in psychiatry gave a talk on ‘challenging behaviours and BPSD’. I challenged him at the end for whom did he deem the behaviour challenging – for the person with dementia distressed, or for the professional who wanted a quiet shift?

I then shortly afterwards went to an evening of a drug company sponsored CPD session on frailty. The GP presenting the case study kicked off with the line ’83 y.o. demented F’. I asked the presenter to justify the use of the word ‘demented’ in his case study. He informed me it was about as pejorative, and equally inoffensive, as saying ‘wheelchair user’.

I don’t want to enter into a discussion about normative morality. That is way beyond the scope of this blogpost. But there comes a time when you simply can’t cope with the deluge of cultural impropriety.

Two events happened back to back only yesterday. For example, a friend of mine, in an otherwise good article in a tabloid, was called ‘Dementia sufferer’ in the title. A press release about a forthcoming BBC programme on cures and dementia was littered with the word ‘sufferer’.

But I have recently been doing a lot of work in education of dementia, and it shocks me how entrenched the BPSD dogma is. I simply don’t want teaching I am involved in with to perpetuate knowingly this misfeasance.

BPSD

‘Person-centred care’ is a much used and abused term. But dealing with failures in communication with a person who lives with dementia but who is distressed is a more ethical (and cheaper) way of behaving, other than pimping money out at Big Pharma.

This extract appeared in a learned journal in 2014. Al Power has not been afraid to put his head above the parapet, for example here.

An individual who’s received a diagnosis of dementia has a right to be angry, agitated, anxious or depressed at conscionable behaviour from a carer or professional, for example. An individual who’s received a diagnosis of dementia is therefore entitled to feel emotions if provoked.

What this situation does not give professionals a right to do is to drug innocent people with dementia always to prescribe antipsychotics inappropriately as a ‘chemical cosh‘.

In parallel to the human right to live with dignity, found in the European Convention of Human Rights which we can all petition over in England and Wales if we are a signatory, irrespective of the Human Rights Act (1999), there’s an expectation that patients of the NHS are not subject to assault and battery from inappropriate medications.

Whilst many of us are saddened by the lack of clarity in the current Government assaulting the legislation over human rights, we also take some comfort in devolution. Scotland is a clear example of an administrative style in one country. Manchester has been another. Maybe with the election of Sadiq Khan in London today we may have another example of a devolved infrastructure, which can distance itself from Westminster, and act as a nestbed for the integration of health and social care?

Be in no doubt – it takes a long time to alter the directions of supertankers. Dementia Alliance International has been campaigning hard on this for a few years now, and as the only influential international stakeholder group run by people with dementia, many of us wish them well.

Only people with dementia can do it, but they can’t do it alone?

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IMG_0251

It was a huge achievement for Prof Peter Mittler, human rights advisor to Dementia Alliance International, to get human rights firmly on the map last week. Dementia Alliance International is the main peak body for people with dementia, working closely, but autonomously, with the hugely influential Alzheimer’s Disease International.

We have to talk about the Dementia Alliance International. This is a group entirely of people who are ‘living beyond dementia’, in the phraseology of their leader Kate Swaffer, campaigning for the needs of people living with dementia.

This can mean that they are often highly sought after for their independent, yet massively influential, views. Prof Mittler CBE has a long and distinguished career in the intellectual disabilities, and now currently lives with dementia. Mittler was indeed one of the leaders who helped to establish the UN Convention on Rights for People with Disabilities.

Mittler’s voice is therefore an authentic and learned one. He has much experience in navigating through the maze that is the policy territory of international NGOs. It was therefore pretty predictable therefore that the resolution he worked on for Dementia Alliance International, with Neil Crowther, would be unanimously assumed by the Alzheimer’s Disease International. This means that rights-based advocacy has now been delegated to all the national dementia societies to implement at a local level.

I believe the way forward in ‘activism’ for human rights needs above all to have authenticity. People with dementia need to be leading from the front, taking charge of the campaign. This is a cardinal example of authentic leadership from the front being much more convincing than ’empowerment or engagement’.

This means that an approach based on slick presentations and booklets with relevant case studies, for the benefit for commissioners, will not be effective in embedding a rights-based consciousness for rights, akin to the racial civil rights movement of Martin Luther King or the democratic movement of Mahatma Gandi.

This means that glossy pitches, grants and Powerpoints in town halls will not be the defining factor for embedding a rights-based culture.

Where I think the town halls will be useful will be in building up a ‘guiding coalition’ of people with similar values, such as other groups which are at the forefront of equality and campaigning against discrimination – e.g. groups campaigning for race-related rights, or rights of people with intellectual disabilities.

But again, such a manner of campaigning solely through this formulaic approach would be highly naïve, bordering on disingenuous, here. Human rights are universal and inalienable – this means they can’t be easily siloed off according to which ‘protected characteristic’, e.g. sexual orientation, age, has been breached on any one particular occasion.

Take for example a right to health, or a right to independent living, under the current framework of global policy on sustainable communities. People with dementia often are not only living with dementia: ergo, policy and campaigning should not treat them as if they are only living with dementia, even if this is a useful corporate third sector construct.

We need to get away from the idea, running through English policy like letters in a stick of rock, that dementia is a condition to be gamed for the purposes of writing grants, for example in human rights.

Above all, people with dementia, not anyone else, must be leading the campaign on rights based advocacy.

Martin Luther King wasn’t white.

Mahatma Gandhi wasn’t from Slovenia.

A rights based advocacy approach for dementia in England can be achieved to a limited extent even if fronted by big charity and associated enterprises belatedly jumping on the bandwagon. But I don’t deny they also serve an important function in ‘playing the system’ – but this is not really what campaigning for rights is about. And they also have the big £££££.

Authentic organisations like Dementia Alliance International, going local, are the key.

The conundrum is quite literally this: Only people with dementia can do it, but they can’t do it alone?

 

My new profile (Dr Shibley Rahman) for the England Centre for Practice Development

Shibley Rahman 0 Comments

I am very honoured to become a Fellow with the England Centre for Practice Development this week. The work of this centre is very much up synchronous with mine.

Fellow Dr Shibley Rahman

My profile:

Dr Shibley Rahman

Dr Shibley Rahman became a Queen’s Scholar in 1987, and he graduated from the University of Cambridge in medicine in 2001, where he also received a Foundation Scholarship. A major finding from his Ph.D. research conducted there under Prof John Hodges was the identification of a novel, innovative, cognitive neurological technique for diagnosing at an early stage the behavioural variant of frontotemporal dementia. This influential finding has been replicated extensively in the subsequent decade, such that it is even cited in the current Oxford Textbook of Medicine. Subsequent post-doctoral research was successfully published by him from the Institute of Neurology at Queen Square, in the behavioural and cognitive neurology of idiopathic Parkinson’s disease in the laboratory of Prof Marjan Jahanshahi; he had also done his junior neurology training under Prof Martin Rossor at the National Hospital for Neurology and Neurosurgery, Queen Square. He is a current member of the Royal College of Physicians in London, having completed his Membership in 2005. Notwithstanding a coma due to meningitis in 2007, Rahman subsequently went onto complete, newly physically disabled, his Bachelor and Master of Law, obtaining a commendation in international corporate law. He subsequently completed his MBA at BPP Business School, where he excelled in economics and markets as well as innovation management.

Originally, Dr Rahman was a supervisor at Cambridge in finals for experimental psychology and neuroscience, but latterly he has grown to be a popular (and invited) speaker at numerous public events both nationally and internationally, including at the invitation of the King’s Fund, Alzheimer’s Europe and Alzheimer’s Disease International. He has become influential in English dementia policy, being a keen proponent of rights-based advocacy for dementia, given his substantial medical and legal training. Dr Rahman’s contributions have been particularly well respected by people living with dementia, as well as by global groups in the third sector and by academics and practitioners alike.

A major drive behind Dr Rahman’s work is doing participatory research collaboratively and inclusively. He is passionate about ensuring the public are both aware and knowledgeable what current trends in dementia research are, and how they impact on policy developments. For example, his first book entitled ‘Living well with dementia: the importance of the person and the environment” was generally accepted to be a thought-provoking, original contribution to the field which won best book award for health and social care for the BMJ Awards in 2015. He has also been instrumental in helping to establish an innovative MSc programme in dementia care and leadetship at BPP Health School, aimed at busy professionals who wish to advance their practitioner skills in dementia.

Selected papers

Rahman, S, Dening, K. (2016, in press) Clinical specialist nurses are still desperately needed in English dementia policy, Nursing Times.

Rahman, S., Griffin, H.J., Quinn, N.P., Jahanshahi, M. (2011), “On the nature of fear of falling in Parkinson’s disease”, Behav Neurol, 2011;24(3):219-28.

Rahman, S., Sahakian, B.J., Nestor, P.J., Hodges, J.R., Robbins, T.W. (2005) “Methylphenidate (‘Ritalin’) can Ameliorate Abnormal Risk-Taking Behavior in the Frontal Variant of Frontotemporal Dementia”, Nature (Neuropsychopharmacology), 31(3): 651-8.

Rahman, S., Sahakian, B.J., Hodges, J.R., Rogers, R.D., Robbins, T.W. (1999) Specific cognitive deficits in early frontal variant frontotemporal dementia, Brain, 122 (Pt 8):1469-93

Selected books

Rahman, S. (2016) [foreword by Prof Sube Banerjee, Lisa Rodrigues and Lucy Frost] Enhancing health and wellbeing in dementia: implementing person-centred integrated care, London: Jessica Kingsley Publishers (in preparation).

Rahman, S. (2015) [foreword by Kate Swaffer, Chris Roberts and Beth Britton] Living better with dementia: good practice and innovation for the future, London: Jessica Kingsley Publishers.

Rahman, S. (2014) [foreword by Prof John Hodges, Prof Facundo Manes, Sally Marciano] Living well with dementia, Oxford: Radcliffe Health.

**Winner of the Best Book for health and social care in BMA Book Awards 2015 **

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

Shibley Rahman 2 Comments

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).

 

Community based rehabilitation provides the vision in dementia care where weak words do not

Shibley Rahman 0 Comments

The term “challenging behaviours” was a very unfortunate import from the field of intellectual disabilities to dementia, necessitating the query “for whom behaviours are ‘challenging’?” Many people with dementia find behaviours of the medical profession ‘challenging’, being polite.

But a ‘good import’, arguably, would be the notion of “Portage”.

The name Portage comes from the town of Wisconsin, USA where the a home teaching scheme was developed in the 1970’s.

Portage is a home visiting educational service for pre-school children with additional needs. These may be learning difficulties, developmental delay or physical difficulties.

The “Portage Home Visitor” works with parents in their home because young children initially learn best in the security of their own environment, with the people who know them. In this way the best teaching programmes can be developed for every child.

Interesting ‘success stories’ exist elsewhere in the world too.

Founded in the Netherlands in 2006/07, Buurtzorg is a unique district nursing system which has garnered international acclaim for being entirely nurse-led and cost effective.

Prior to Buurtzorg, home care services in the Netherlands were fragmented with patients being cared for by multiple practitioners and providers.

Ongoing financial pressures within the health sector have led to home care providers cutting costs by employing a low-paid and poorly skilled workforce who were unable to properly care for patients with co-morbidities, leading to a decline in patient health and satisfaction. This is a problem which England shares too.

Indeed, a recent report last week from the International Longevity Centre discussed again the significance of co-morbidities in dementia Buurtzorg’s solution has to give its community district nurses far greater control over patient care – a factor which it attributes as key for its rapid growth.

There is huge interest as to whether ‘the Buurtzog model’ can be adapted for the English system.

Until recently, neither persons with dementia nor national dementia societies had used their right of access to UN Convention on Rights for People with Disabilities to which they are legally entitled defined by the scope of Article 1.

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Prof Peter Mittler CBE, Advisor for Human Rights for Dementia Alliance International, writes:

“At the recent WHO Ministerial Conference on Dementia, Kate Swaffer [Chair of Dementia Alliance International] set the ball rolling at the opening session by including ‘Access to CRPD’ as one of DAI’s demands.”

In addition, a robust, human-rights based resolution submitted by Alzheimers Disease International on behalf of 38 national Alzheimers Associations was reflected in the first of the General Principles of the Call for Action by WHO Director Dr Margaret Wang.

It was remarked that an aspiration should be that “policies, plans, programmes, interventions and actions are sensitive to the needs, expectations and human rights of people living with dementia and their caregivers“.

The concept of ‘post-diagnostic support’ (soothing, but in reality weak words for England’s policy in dementia) needs to be re-configured as a rehabilitation pathway.

Essential to the re-framing of the whole discussion is getting rid of the idea that ‘post diagnostic support’ is a haphazard AFTER THOUGHT – and that the medical model is KING through the strategic placement of ‘diagnosis’. Sure, without the diagnosis, nothing further can happen, but the issue is that even with the diagnosis some people are experiencing next to nothing in care in England, and even if they experience some care it is fragmented and disjointed.

There is no better introduction into how the sequelae of the dementia diagnosis can be so positively destructive than Kate Swaffer’s own description of ‘prescribed disengagement™’ in a prominent journal here.

This pathway begins possibly even at the time of contemplation of the diagnosis with extensive support to after when the diagnosis has been given. At all times, the recipients of that diagnosis (including immediate closest) should be opportunities to ask questions and discuss ways in which care and/or support can be given.

Enablement should be the goal now.

Other jurisdictions, for example Queensland in Australia, have been outstanding in leading – see this report, for example, here.

Recent, rather limp words recently even seemed to miss out ‘caring well’ altogether – making English policy on this close a bit strange to put it mildly.

A ‘pathway’ is a somewhat cranky technocratic word, and could be considered entirely inappropriate in the context of an English government intent on cutting state provision of a ‘safety net’. But at best it might provide decision points which might be legitimately and reasonably expected at points in a personal integrated care and support plan following diagnosis.

The lack of national adoption of pathways, entirely due to entirely political reasons, and despite a plethora of evidence to prove pathways can promote health and wellbeing for patients with dementia and carers, has been noteworthy here in England, tragically.

Notwithstanding, a rehabilitation pathway would provide access to a wide range of specialists. These might include, for example, the following personnel, no one part of the ‘workforce’ being “more important” than others, promoting independence as part of an inclusive, accessible community for all.

People with dementia and those closest to them themselves have an important rôle to ply in co-designing pathways in genuine co-production, if they are working on an equal and reciprocal basis.

Specialist clinical nurses who can act from the point of diagnosis providing continuity of care are important are sufficient in themselves. They are especially helpful in applying palliative care principles. For too long, it has been dismissed that dementia is a terminal condition, thus denying many people with dementia equitable access to palliative approaches.  Furthermore, it has been insufficiently addressed that people with dementia have a right to the highest standards of health from the NHS, regardless of setting.

These trained clinical nursing specialists are also extremely well placed to sort out issues arising from co-morbidities in health and illness, helping to head off avoidable acute admissions to hospital, or premature inappropriate transfer to residential care. Admiral nurses are also pivotal in helping coping strategies, essential in averting ‘crises’ in dementia care.

Other specialists might include:

  • Occupational therapists are pivotal, I feel; this rôle could include wider implications of he diagnosis and a discussion possible adaptations to the home and domestic appliances, and various forms of technology and innovations. A particular challenge, for example, might be to negotiate higher order problems in processing of the senses, including vision, as per posterior cortical atrophy.
  • Physiotherapists to maintain mobility and promote physical exercise.
  • Speech and language therapists to promote language and communication, especially important in Alzheimer’s disease and temporal forms of frontotemporal dementia, as well as to ensure safe swallowing following particular vascular events.
  • Clinical neuropsychologists to advise on adjustment to diagnosis, improving and maintaining cognitive functioning, promoting thought diversity and an ‘assets based approach’ where people’s skills can be best utilised.
  • Dieticians: a healthy diet is relevant in the progression of dementia, and especially so arguably for vascular dementia and Alzheimer’s disease. Also, latterly, particular attention has been given to optimising eating environments as part of the ‘healthy eating’ ethos.
  • Social workers are much utilised in my opinion, and I should like to see a much wider rôle than in safeguarding or crises, though I think capacity building in the workforce of social workers with a specialist interest in mental health issues might be helpful. I think social work practitioners are vital in the promotion of wellbeing, in enabling and protecting people with dementia, and provide access to community resources perhaps including personal budgets for some,
  • Pharmacists. Many medications can worsen cognitive symptoms potentially and act as risk to physical health indeed, and inappropriate polypharmacy needs to be reviewed by specialists in pharmacy.

Certainly medical professionals in primary and secondary care are vital where another plank of integration is needed, to ensure people with dementia and their closest genuinely do get the right care in the right time at the right place. I have no doubt primary care, with their wide experience of medicine, and upholding a proactive stance too, would be vital in community based rehabilitation, including general practitioners. But the current service issues in resources for, recruitment to, excessive regulation of, and access to general practitioners in England cannot be ignored.

The UN 2016-2030 Sustainable Development Goals were launched with a commitment to “Leave No One Behind”, a similar theme having been ‘no decision about us without us’. I have a concern that the poorly named “dementia friendly communities”, being aimed at being politically inoffensive by the chief cheerleaders in England, and being so cost neutral, does not do enough to resolve social inequalities in reality.

We know this is a danger, say, for housing. But worldwide extrapolation of inequity would be disaster, particularly when we consider the number of people thought to be living with dementia in low and middle income countries around the world.

All too easily ‘dementia friendly communities’ can become a strapline as a sticking plaster for cuts elsewhere in the Big Society, to secure a quickie competitive advantage in marketing – this is indeed addressed in this briefing from March 2015 here:

“There have been concerns that the target created incentives for governments to focus on‘low hanging fruit’ rather than those most in need.”

As a consequence of sustained advocacy, persons with disabilities are now clearly included in the 17 SDGs and 169 implementation indicators. Although the needs of older persons are recognised, persons with dementia are in grave risk of being overlooked.

It is likely that, if Big Pharma are successful in producing orphan drugs capable of being regulated and distributed, there will be an inequity regarding domestic recommendations about making these drugs available. The ‘economics of rescue’ doctrine means that there should be no stone unturned in providing medications in palliative care; but NICE will have other views on the greatest benefit for the largest number of people in their econometric ullitarian cost-benefit analysis.

It is indeed likely that persons with dementia in Low and Middle Income Countries should be able to benefit from the long established WHO Community-Based Rehabilitation (CBR) Programme described here.

“Community-based rehabilitation (CBR) was initiated by WHO following the Declaration of Alma-Ata in 1978 in an effort to enhance the quality of life for people with disabilities and their families; meet their basic needs; and ensure their inclusion and participation. While initially a strategy to increase access to rehabilitation services in resource-constrained settings, CBR is now a multisectoral approach working to improve the equalization of opportunities and social inclusion of people with disabilities while combating the perpetual cycle of poverty and disability. CBR is implemented through the combined efforts of people with disabilities, their families and communities, and relevant government and non-government health, education, vocational, social and other services.”

As a clear example as what could be achieved by engaging trained professionals too into English dementia policy, the Royal College of Physicians of London have been leaders too.

See this interesting case study:

“This Future Hospital Programme case study describes how the Torbay and South Devon NHS Foundation Trust is fulfilling their aim of achieving stroke rehabilitation 7 days a week in both the Stroke Rehabilitation Unit and surrounding areas.”

Stroke care, like cancer care, is in a different place to dementia.

And we know why. The only hope in English policy appears to be some chosen ones selectively adding fertiliser to a few flowers blooming when the entire garden had actually been devoid of being watered for several years. And this needs fixing the gardener.

Unfortunately, people who are less skilled – but who are ‘advising’ or ‘supporting’ – might possibly insufficient alone to service needs of people living with dementia and carers, even if they meet the needs of certain charities, but they do serve a useful function in service provision. Quality is essential for enablement.

 

 

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Please come to see my talk in the policy stream of the Alzheimer’s Disease International conference this week in Budapest.