Policy

Where English dementia policy needs to go now: a personal view for #AlzDebate

Shibley Rahman 1 Comment

Dementia wordie

I am an academic physician specialising in dementia. I write this blogpost as a guide to people who might be interested in my views on where English dementia policy needs to head.

I spend most of my time studying the latest papers around the world in dementia and other cognitive disorders from here and around the world. I also seek out the views of people who’ve received a diagnosis of dementia, and live daily with the condition. I haven’t ‘engaged’ them, or ‘involved’ them. They’re my friends, and I chat with them. I am also interested in the beliefs, concerns and expectations of those closest to them.

I’m slightly fed up of people promoting themselves in English policy to be blunt. These are people who feel their own self importance is more important than the needs of people with dementia and those around them. I am sick of how dementia has become an ‘industry’.

Conversely, people who have a diagnosis diagnosed below the age of 65 need professional help and guidance to help them navigate through the effects of the diagnosis on their social networks and/or employment.

We can’t leave people languishing with such little support in parts of the country – and we don’t just need a high volume of low quality diagnoses. All diagnoses have to be correct as far as possible, and I suggest committing resources for training up GPs or specialist nurses who already have a good knowledge of general medicine to assist with this.

The policy thread of ‘dementia friendly communities’ is well intended. For me, however, it smacks too much of the ‘does he take sugar?’ phenomenon. Maybe it’s the case that I am indeed supersensitive to this. I am physically disabled, and do tend to notice how people’s attitudes can be incorrectly formed on this basis.

One of the most inspiring talks I heard recently was by Simon Baron-Cohen, a chair in psychology at Cambridge. Simon was talking at the LSE, but he was my first ever supervisor at Cambridge. He was talking about his own specialism – autism and Asperger’s Spectrum conditions.

He mentioned Gary Mackinnon – and how despite hacking into the US top security systems Gary wasn’t (and isn’t) intinsically a bad man – Gary had left electronic post it notes every level he had breached for the benefit of the CIA.

Simon urged a reframing of autism as a condition which presented both disabilities but aptitudes. I feel we need a similar reframing and reforming of English dementia policy. I don’t wish to get into an aggressive discussion of social v medical model,  but the framing of our policy is poor. The term ‘post diagnostic support’ for many does not inspire confidence. What would inspire confidence is a practical infrastructure for enablement, comparable to what would be provided in rehabilitation following a physical disability.

We need to harness the opportunities of non-medics, but who have a huge amount to contribute – ranging from occupational therapists who can help with assistive technologies, or speech and language therapists who can help with communication or swallowing difficulties?

Dementia not being treated as seriously as cancer is a real problem. We can’t go on producing policy annually for the benefit of one Big Charity, producing one million, then two million, then three million “dementia friends”. We need to have clearly signposted choice points in enablement. Dementia policy needs a substantial consensus on care pathways – to give some certainty, but also to include some flexibility.

There needs to be some structure too. Society should be inclusive, but there are limitations to overegging the ‘dementia friendly communities’. Communities should be inclusive and accessible to all. You can’t “spot” a person with dementia in the community by a sticker on his head, or by the way he’s acting.

Research needs to be more balanced, including good quality research into care as well as the brilliant cellular and molecular research. But humility is needed to accept that all research is worthy in itself, irrespective of whether drug therapies are found.

People who say we don’t have to choose between cure and cure need to factor into their views that social care funding is on its knees. The NHS also has insufficient monies to perform optimally. All persons with dementia are entitled to the best quality healthcare, whether they’re in hospital, at home, in a hospice, or in  a care home. Cosying up to government and then complaining to fix dementia care is – no ifs or buts – weak leadership.

Access to the right quality care is important. Some of the work can be done by people with not much more than a NVQ in advising or supporting, but we do fundamentally need more properly trained clinical specialist nurses ensuring continuity of care and higher level care (e.g. in caring for those caring, palliative care, incontinence). One reason for this is a reluctance to consider dementia as a terminal illness – but the other sadly is selfish brutal politics. You unfortunately pay for what you get.

Above all, the lived experience of all people living with dementia and their closest is paramount. We don’t need to pour huge amounts of money into middle men into measuring this. We simply need to listen.

The term ‘post diagnostic support’ for dementia is as unconvincing it sounds

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The term ‘post diagnostic support’, as applied to dementia, I feel is incredibly unconvincing. English dementia policy has entrenched itself in a position of the primacy of the diagnosis. I do not wish to rehearse yet again the numerous arguments for and against the timely diagnosis here.

In an ideal world, ideal for Big Pharma that is, you’d invest in an insurance package in the US., or you’d be a patient of the NHS, and, on your diagnosis of possible dementia, your general practitioner would prescribe you a “magic bullet”. The bullet might slow the progression of your dementia right down, or may even stop you getting definitive symptoms.

And there is quite a quaint faith in ‘cures’. You can’t as such ‘cure’ headaches or asthma. And the drugs which were trialled on healthy 30-40 year-olds as single interventions aren’t necessarily going to behave themselves in 60-70 year-olds with a number of other medical complaints receiving polypharmacy.

But the world is not ideal – the cuts in social care around the world are testament to that. If the numerous failures in orphan pharmacotherapy for Alzheimer’s disease is anything to go by, it might be wise not to repeat the same mistake yet further and expect a different result.

The diagnosis disclosure itself is not the simple imparting of information that ‘you have dementia’. It should be a chance for the person giving the diagnosis, whether a physician, GP, specialist nurse or otherwise, to explore the beliefs, concerns and expectations of the recipient of that diagnosis. And if necessary, it should be a chance for the person to have some counselling about the potential implications of the diagnosis.

The phenomenon of ‘nothing can be done’ has a number of repercussions for people. It can lead to a delay in seeking a diagnosis, and lead to a lack of engagement with the diagnosis once given.

It is also untrue.

A correct diagnosis of dementia could lead, perhaps, to the correct care and support mechanisms coming into action.

I have personally problems with the notion of ‘consumer choice’, but not because I am a protecter of the professions’ vested interests. Far from it.

I once asked Prof Bob Woods what he thought of ‘meaningful activities’. Prof Woods replied ‘better than meaningless activities, I suppose, Shibley?’

Likewise, it has to be, surely, the case that choice is meaningful too? Actual choice is scuppered by all of the social determinants of health – and in particular lack of money.

But I do not agree with an overly paternalistic, profession-driven, approach either. I think a person after a diagnosis of dementia should be actively making decisions about what’s best for him or her after diagnosis.

This might include appropriate housing as a personal home, or residential settings. Or it might include help with speech or swallowing from a speech or language therapist. Or it might include preventative strategies for medics for high blood pressure or high cholesterol. Or it might include occupational therapy intervention for assistive technology help, such as memory aids, not all of which is prohibitively expensive.

I think also the ‘enablement’ perspective also recognises that you may not be able to get a person to exactly where he or she was before, but allows for diversity, and allows for the existence of a person equally as valid, at least, as that pre-diagnosis.

Planning for the future also necessarily involves protection; and this could include protection over financial and legal affairs, such as power of attorney or budgets. The social care profession must have a seat at the table there.

I really do feel the term ‘post diagnostic support’ does a disservice to what should and could be happening beyond a diagnosis of dementia. This is evident in the output from some of current clinical leaders in dementia all too sadly.

Am I contributing to a culture of fear about the NHS?

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The authors of this piece are Rebecca Myers and Shibley Rahman.

Rebecca Myers (RM) is an Organisational Development Practitioner/Return to Practice Community Staff Nurse).

Dr Shibley Rahman (SR) is a former junior doctor, and currently an academic physician in dementia.

We are posting this on a freely available blog and we welcome any comments you have on this topic. Whilst not specifically related to the focus of this site, this is an important blog which is helpful for people at large to reflect on.

Introduction

  • “We are so sorry but …”
  • “You know that patient you saw last night…”
  • “There’s been a complaint and it concerns you…”
  • “We’ve missed our quality/financial target this quarter…”
  • “If you do/say that your position is untenable…”

These are just some of the phrases that trigger an emotional response of fear, and can affect us all whether we are a member of the public, a health professional, Board Director or the Secretary of State for Health.

How we respond to our feeling of fear can lead to a number of constructive or destructive consequences for patients, staff and the NHS as a whole.

This piece seeks to provoke thought, discussion and change using learning from neuroscience and the social sciences. It is aimed at a wide audience of patients, professionals, politicians, press and the population at large; we believe it is only by a shared/broader understanding of responses to fear, and individual and collective responsibility for our responses and their potential consequences, will we be able to create a possibility of talking openly and honestly about issues that affect the performance and future of the National Health Service.

This in turn can encourage a dialogue with a range of people who might be touched by the issues. We hope that with exploration of the ‘science’ behind fear and responses to it we might head towards a more inclusive and generative set of solutions for the challenges in the NHS for the benefit of patients, staff and the public.

 

 

 

Personal perspectives

Our personal responses are worth some scrutiny to illustrate the theory and the science.

We are, like everyone else, acutely aware of feeling fearful. If you return to clinical work after a protracted period of time out (as indeed one of the authors, RM, has done), you can become engaged into a ‘conscious incompetent/competent’ state. This is where you have to think so much harder to achieve the same result. It also means that, depending on the precise moment-by-moment situation, you can be prompted into a whole range of emotions from curiosity to frustration to enthusiasm and outright fear. Initially described as “Four Stages for Learning Any New Skill”, an influential theory developed at the Gordon Training International by its employee Noel Burch in the 1970s (Adams, date uncertain) offers a framework for understanding and then managing fear in learning situations.

 

An explanation of fear and blame

It is important in exploring fear not to be unhelpfully reductionist. But it has long been recognised that fear can be manifest as an outright ‘flight or fight’ response as per Walter Cannon (1932); it has its biological basis as a primitive survival mechanism alerting us to potential threat and enabling us to respond in a way that keeps us safe.

Damasio (1994) introduced the “somatic marker hypothesis” which suggests structures in the ventromedial prefrontal cortex provide the substrate for learning an association between certain classes of complex situation on the one hand, and the type of bio-regulatory state (including emotional state) usually associated with that class of situation in past individual experience.

The establishment of a somatosensory pattern appropriate to the situation via the ‘body loop’ or the ‘as-if body loop’ both overtly or covertly is co-displayed with factual evocations pertinent to the situation and qualifies those factual evocations. This constrains the process of reasoning over multiple options and future outcomes and ‘shortcuts’ to a judgment of the scenario as either good or bad.

When this is overt the somatic state operates as an alarm signal. When covert it operates a biasing signal, which in turn influences cognitive processing.

This suggests that interpretations of situations and learned responses to these (including those laid down in early childhood) guide our reactions to situations we may consciously or unconsciously perceive as fearful.

That the brain processes the precise emotion of fear in a distinct way is indeed supported in cognitive neurology evidence. It has been known for some time that a part of the brain, called the amygdala (so called as it is shaped like an almond), is somehow involved from rare experiments of nature. But the neural network involved might be more extensive than first hypothesised (Khalsa et al., 2016).

 

Why the response to fear is personal

Once the emotion/sensation of fear has arisen we have various conscious and unconscious response options. If we take a Gestalt perspective, we would say we ‘need’ to respond in a way that addresses the original sensation or else we remain in a heightened state of awareness. This would prevent us from ‘moving on’ from the situation we had encountered (this is shown in an adaptation of the ‘experience cycle’ presented by Zinker, 1977).

Figure

How the sensation leads to different emotions, is influenced by the context in which we see ourselves, and the subsequent meaning we attach to them. (See, for example, Gergen’s work on social constructionism https://vimeo.com/15676699.) Using the example of facing a situation back in practice to illustrate, will my actions help or harm the patient, and to what degree? Is there someone supportive nearby to guide and assist me if I get stuck? If I make a mistake what will happen to me?

Whilst we might have a biological predisposition to reacting in a certain way as a learned response, it is possible that our individual childhoods might contribute to these learned responses and adult psychopathology (Rich, 2006). Thus, in my moment of fear, if I define the situation as one of potential failure do I choose to say “I can’t do this” and risk a reaction from the patient of lack of future trust, or my mentor of seeing me as having less ability or potential which in turn affects my ability to practice? Our ability to formulate a constructive response to this in the moment may be hampered by a tendency to fragment and simplify the problems, rather than to see the reality of the situation as a whole. This is demonstrated by the framing of the narrative by the physicist, David Bohm who describes the importance and need for ‘wholeness’ when looking at and responding to situations.

The neurocognitive explanation might appear deceptively straightforward, but in reality involves a complex process map including task selection and decision-making in the prefrontal cortex and related structures (Gleichgerrcht et al., 2010).

 

When the emphasis changes from the individual to broader organisational learning 

If we extrapolate the response of an individual to a fear response to the group or organisational level we can observe situations where in the desire for learning or accountability there is a desire to find someone to blame. There is a concern if no-one is held to account, such as in Mid Staffs or Southern Cross, that any misfeasance goes undetected and so, effectively, unpunished? This can then lead to a sense of things being unresolved or lessons not learnt, which can leave people unable to withdraw or obtain closure.

Again taking the personal to illustrate, becoming a ‘marked man’ by a regulator can also put you on edge, even if you have had your problem mutually resolved between you and your regulator. Somewhat paradoxically for the regulator, if following this experience you are so petrified of making a mistake, you put yourself at greater risk of making a mistake. The aspiration that a clinician (or anyone else) never makes a mistake is of course ideal, but this flies in the face of the reality of life (clinical or otherwise). It’s what is well known by people who’ve faced addictions as the “don’t think of elephants” phenomenon – your first response to not thinking of elephants is to think of an elephant.

The experience of one of us (SR, having been through the entire cycle of disciplinary procedures by a clinical regulator when very sick, and then restored when well), albeit individual, outlines the tension between the rhetoric of organisational learning and ‘learning from failures’.

This experience (for SR) was an utterly demoralising, destructive, experience, but from which a recovery revealed itself, both in mental health and professionally. This personal experience coincided with a period where that regulator had a problem of a number of alleged suicides due to the investigative process (Davies, 2013). It is still not widely understood how the regulation of an individual and the contributory factors for the case are related to the regulation of the system and its working environment and how by focusing on one you might address the other.

What is important to think about is that the essential biological response to fear plays out moment-to-moment wherever we ‘sit’ in the context of the NHS and the consequences that arise from our responses impact not just ourselves but also those around us and, in some cases, the whole system. This is seen not only in high profile clinical/care cases such as the Bristol Inquiry, Mid Staffordshire, Baby Peter and Winterbourne to name just a few but also in the responses to the Health and Social Care Act, funding decisions in the NHS and social services, and approaches to regulation.

 

This issue applies to everyone

 We argue that this issue is of relevance to us all. An inability for any of us to ‘manage our fear’ in order to deal with the issues involved in a reasoned way risks preventing us from moving forward: ‘Insanity is doing the same thing over and over again and expecting different results.’ (Albert Einstein)

It is worth thinking about whether the fear around the NHS serves any evolutionary advantage, which offers an opportunity for something better. Does it make us better clinicians in our normal clinical life? Is it supposed to tune us in sharply in what is deemed unacceptable by the public at large or raise our awareness around the future of a much loved institution? Or is it rather that the moral panic that can ensue is not the best climate calmly to formulate clinical decisions or policy?

For all involved, from ministers to families, events referred to above, understandably evoke a range of emotions of which fear will play a significant part. We ask, and say to, ourselves: “I could have done more”; “How did I allow my loved one to be treated like that?”; “Why didn’t I speak out?”; “Will I lose my job/reputation/election?”. We are not commenting on the hierarchy of these questions or making judgement here on what is or isn’t appropriate but highlighting the commonality around how our emotions are evoked which leads to a response which in turn leads to a consequence. Being able to be thoughtful about the potential consequences of our own reactions in these moments (or, in the case of the type of examples above, significant periods of time) whilst difficult can be extremely valuable.

As Manoj Pawar (2007) notes:

“As a result of the fear-based emotions linked to blame, people tend to shift their energies from understanding and learning processes for the interest of the group toward self-preservation, attacking and defending their individual interests.”

If I respond with the ‘fight’ response by attacking the representation/manifestation of my fear will I push others to defend and fight back or run away (flight)? Will that then help with the situation I, or the system, am facing?

But a slower cognitive process can later modulate what is conceivably an appropriate evolutionary response. It is well known that slower clunky parts of the brain involved in planning act as a check on the faster response (for a discussion of the wider context of this, please see Haidt (2011) and Kahnemann (2012)).

The authors of this piece want to be very clear they are not suggesting not raising issues or questioning mistakes or policy decisions, but highlighting the importance of doing so in a manner that enables people to think and reflect not overwhelm or evoke defensiveness and denial. Perhaps adopting what Edgar Schein (2013) describes as a “humble inquiry”, which advocates asking questions to understand what has happened and why, refraining from judgement and keeping an open mind.

This can guard against the well known psychological phenomena of ‘confirmation bias’.

“When we think that a particular course of action is correct, our tendency is to interpret any available information as supporting that thinking. This is known as confirmation bias.” (Beshears and Gino, 2015).

The world of social media has opened up the dialogue and given voice to those who often weren’t heard. It is changing the relationship between different groups. The social care blogger @ermintrude2 recently analysed this phenomenon of ‘flattening hierarchies’, and what might actually be behind this meme (@ermintrude, 2015).

 Both positive and negative consequences?

With this brings both positive and negative consequences and there’s a fine line between possible outcomes.

Positive experiences undoubtedly occur around sharing experiences, raising issues challenging assumptions, enabling dialogue, building networks and sense of community. “John’s Campaign” http://johnscampaign.org.uk is one example of a brilliant organic campaign for carers to accompany patients diagnosed with dementia into hospital, which has become a new NHS quality target (known as a CQUIN).

But there is a flip side: trolling, public abuse, combative debate, personal attack and groupthink; all can be fear inducing and again provoke fight – flight responses. At worst, individuals, previously well, can go into a spiral of decline of profound depression, and, if the narrative provides no sense of hope for improvement, we can see a state of ‘learned helplessness’ develop around people’s ability to change the situation (Vollmayr and Gass, 2013).

No one is immune from this – from junior doctors who in statutory law do not have whistleblowing protection (Cooper, 2016), to relatives trying to get answers following a mistake or unexpected death, to senior managers having their personal lives plastered over the front page of the newspapers – codifying just how vulnerable we all are.

People talk about a ‘blame free’ culture or a ‘just’ culture within the NHS as if the culture of the NHS is: (a) homogenous and b) determined purely by those within the ‘system’. But we argue that this fails to recognise the wider ecosystem and what Ralph Stacey (2001) refers to as the complex responsive processes that are set in motion when any of us do something (https://m.youtube.com/watch?v=RTAV7-FZLRs). This can make the discussions about who is to held to account, and how, complex and controversial.

 

A need to be honest about what we mean about ‘shared’ leadership

We would suggest that all of us contribute to this culture either directly or indirectly, and to ignore this is essentially a “wilful blindness” to the harm that is done when patients, the population at large, staff (be it clinical, administrative, social services or managerial) and politicians are not listened to in a blame culture. This will inhibit our ability to learn from experiences, good or bad (Heffernan, 2011). And wilful blindness can occur anywhere in healthcare ecosystems.

Peter Senge (2006) has written extensively on the learning disciplines – we individually and collectively need to foster to create a ‘learning organisation’ and both Sir Robert Francis and, more recently, Don Berwick referred to this as essential for the NHS to not just survive, but also thrive in the current climate of quality and financial challenges (National Advisory Group on the Safety of Patients in England, 2013).

 

So if we always do what we’ve always done…

Arnold Beisser’s (1970) Paradoxical Theory of Change argues, “change occurs when one becomes what he is, not when he tries to become what he is not”. So next time something happens which evokes a sense of fear and anxiety whoever you are or wherever you sit within the ‘system’, remember the chain of complex responsive processes you may set in motion and ask yourself, “am I creating an environment of curiosity, learning and change?”

Or, are you in fact perpetuating a culture of fear and blame, that takes us further from where we want, and more importantly, we believe, need to be?

London, 1 April 2016.

 

 

 

References

@ermintrude2 (2015) Flattened hierarchies (blogpost dated Nov 8, 2015), https://medium.com/@ermintrude2/flattened-hierarchies-ee54e9ba2cfc#.bcin2dknp.

Adams, L. “Learning a New Skill is Easier Said than Done”.Gordon Training International. http://www.gordontraining.com/free-workplace-articles/learning-a-new-skill-is-easier-said-than-done/ (page accessed 11 March 2016).

Beisser, A. (1970) Paradoxical Theory of Change, Gestalt Journal Press http://www.gestalt.org/arnie.htm

Bergias, S. (2013) Truth-Resistant People, Leadership Excellence, March 2013, pp.11.

Beshears, J, Gino, F. (2015) Leaders as Decision Architects, May, https://hbr.org/2015/05/leaders-as-decision-architects.

Bohm, D. (1980) Wholeness and the Implicate Order, Routledge.

Cannon, W. (1932) Wisdom of the Body. United States: W.W. Norton & Company.

Cooper, B. (2016) How the government is leaving whistleblowing doctors to twist in the wind, New Statesman (25 February 2016), http://www.newstatesman.com/politics/health/2016/02/how-government-leaving-whistleblowing-doctors-twist-wind

Damasio AR. (1994) Descartes’ error and the future of human life. Sci Am. Oct;271(4):144.

Davies, M. (2013) GMC launches internal review of suicides among doctors facing fitness-to-practise investigations, Pulse Today, http://www.pulsetoday.co.uk/your-practice/regulation/gmc-launches-internal-review-of-suicides-among-doctors-facing-fitness-to-practise-investigations/20004473.fullarticle (page accessed 11 March 2016).

Gleichgerrcht E, Ibáñez A, Roca M, Torralva T, Manes F. (2010) Decision-making cognition in neurodegenerative diseases. Nat Rev Neurol. Nov;6(11):611-23.

Haidt J. (2001) The emotional dog and its rational tail: a social intuitionist approach to moral judgment. Psychol Rev. Oct;108(4):814-34.

Heffernan, M. (2011) Willful Blindness. Walker & Company, 2011.

Kahnemann, D. (2012) Thinking fast and slow, London: Penguin Books.

Khalsa, SS, Feinstein,JS, Li, W, Feusner, JD, Adolphs, R, Hurlemann, R. (2016) Panic Anxiety in Humans with Bilateral Amygdala Lesions: Pharmacological Induction via Cardiorespiratory Interoceptive Pathways, The Journal of Neuroscience, 23 March, 36(12): 3559-3566.

Mendick, R, Donnelly, L, Kirk, A. Medical blunders cost NHS billions, Telegraph, http://www.telegraph.co.uk/news/health/news/11733719/Medical-blunders-cost-NHS-billions.html 11 July 2015 (page accessed 11 March 2016).

National Advisory Group on the Safety of Patients in England (2013) A promise to learn – a commitment to act: Improving the Safety of Patients in England, https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/226703/Berwick_Report.pdf.

Nenadic I, Güllmar D, Dietzek M, Langbein K, Steinke J, Gaser C. (2015) Brain structure in narcissistic personality disorder: a VBM and DTI pilot study. Psychiatry Res. Feb 28;231(2):184-6.

Pawer, M. (2007) Creating & Sustaining a Blame-Free Culture: A Foundation for Process Improvement, The Physician Executive, July/August, pp.12-13.

Rich P. (2006) From theory to practice: the application of attachment theory to assessment and treatment in forensic mental health services. Crim Behav Meant Health, 16(4):211-6.

Schein, E.H (2013) Humble Inquiry: The Gentle Art of Asking Instead of Telling. Berrett-Koehler Publishers.

Senge, P.M. (2006) The Fifth Discipline: The art and practice of the learning organization: Second edition, London: Random House.

Stacey, R (2001) Complex Responsive Processes in Organizations: Learning and Knowledge Creation (Complexity and Emergence in Organisations), London: Routledge.

Vollmayr B, Gass P. (2013) Learned helplessness: unique features and translational value of a cognitive depression model. Cell Tissue Res. Oct;354(1):171-8. doi: 10.1007/s00441-013-1654-2. Epub 2013 Jun 13.

Zinker, Joseph, (1977) Creative Process in Gestalt Therapy. New York: Brunner/Mazel Publishers.

The UK budget 2016 has exposed convincingly the grim reality of ‘dementia friendliness’

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The most significant aspect of yesterday’s Budget was that UK growth is revised down last year, this year, and indeed every year it’s forecast. But it was the day last orders were given – failure to meet most targets, and more borrowing and national debt. The current Government boasts that it is only with a strong economy it can deliver on aspects of life, many of which are relevant to people living with dementia and all types of carers. But it is clear that the UK economy is still inherently weak. The concept of the ‘dementia friendly communities’ has been to the financial benefit of many people without dementia, but the key question remains about its license to operate from the perspective of people living with dementia and their significant others.

 

Instead, as a question of priorities, corporation tax has been cut and billions being handed out in tax cuts to the very wealthy. This is unlikely to be exhibited in any significant improvement in dementia friendliness by multi-nationals and high street chains.

 

It is right that the Chancellor has recognised the funding pressures facing councils and local services over the next few years and has not announced any more cuts to local government.

 

But it is indeed disappointing that the Conservative Chancellor has not accepted calls by councils, the NHS, care providers and the voluntary sector to bring forward the £700 million of new money in the Better Care Fund by 2019/20 to this year. The failure to do so means vulnerable members of the community still face an uncertain future where the dignified care and support they deserve, such as help getting dressed, fed or getting out and about, remains at risk. This is the grim reality of what is marketed as ‘dementia friendly communities’ has come to in the UK, a concept which still continues to benefit some rather than others. This is at a time when the Government is known to be shifting priorities from dementia to diabetes, to which instruments such as the ‘sugar tax’ and obesity strategy might more directly speak to. The morale of people expected to deliver high quality care, including junior doctors and nurses, is at the lowest it has been for quite some time.

 

Vital social care services are relevant to protecting and enable people in society, not just in relieving the massive problem of delayed discharges in the NHS. The threat of a care home crisis is still disturbing. The deficit in the NHS has risen to its highest level ever on record. Waiting times are up, the NHS is in a critical condition, hospital after hospital faces serious financial problems. The NHS should have the resources to concentrate on the health needs of the people, not do budgetary acrobatics to survive. With a distinct lack of influential people speaking truth to power, dementia policy in the UK is in a dire state.

 

At a time when the Public Accounts Committee have only just reported that NHS finances have deteriorated at a severe and rapid pace, we do not just need gimmicks from charities loyal to Government of ‘fixing dementia care’.

 

The whole system needs proper resource allocation so that people living with dementia can have their health and wellbeing enhanced, whatever the care setting. Mistakes here are compounded in a double lock from serious mistakes by Government civil servants in dementia. The recent Implementation Plan for the Department of Health 2020 document on dementia did very little to prioritise the importance of skilled workforce such as clinical specialist nurses in care pathways, and indeed was generally bereft of meeting the needs of people with dementia and carers in clinical settings.

 

We have also seen devastating cuts to public health budgets and mental health budgets, further having a devastating impact on English dementia policy. Previous governments have touted the use of these tools as promoting ‘choice and control’, and yet the rhetoric is clearly mismatched to reality. Earlier this month the Government forced through a £30 per week cut to disabled ESA claimants. As dementia is a disability both under domestic and international legislation, it is hard to see how the UK wishes to promote international policy of sustainable communities and independent living for people living with dementia under the lens of disability rights.

 

Finally, the UK needs to value and acknowledge the social capital of the huge army of upaid carers, as well as paid carers many of whom are afflicted by under-employment and insecurity. Security comes from knowing where your income is and knowing where your job is. We need to value all carers if the rhetoric of ‘dementia friendly communities’ is to have any substance.

 

All in all the UK budget exposed the grim reality of “dementia friendly communities”, and the stark impotence of key individuals now to speak truth to power.

There’s something about tau

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Tau

Alzheimer’s disease is the most prevalent type of dementia globally, and therefore traditionally gets the most focus. However, there are other neurodegenerative conditions of note which are of massive importance. For example, neurodegeneration with brain iron accumulation (NBIA) is a group of disorders characterized by dystonia, parkinsonism and spasticity. Models of Alzheimer’s disease, frontotemporal dementia, Parkinson’s disease and Huntington’s disease show some striking similarities to the corresponding human pathologies in terms of axonal transport disruption, protein aggregation, synapse loss and some behavioural phenotypes (Gilley, Adalbert and Coleman, 2011). In early stages of Alzheimer’s disease, neurofibrillary tangles (NFT) are largely restricted to the entorhinal cortex and medial temporal lobe. At later stages, when clinical symptoms generally occur, NFT involve widespread limbic and association cortices. At this point in the disease, amyloid plaques are also abundantly distributed in the cortex.

Induced pluripotent stem cells (also known as iPS cells or iPSCs) are a type of pluripotent stem cell that can be generated directly from adult cells. The iPSC technology was pioneered by Shinya Yamanaka’s lab in Kyoto, Japan, who showed in 2006 that the introduction of four specific genes encoding transcription factors could convert adult cells into pluripotent stem cells. He was awarded the 2012 Nobel Prize along with Sir John Gurdon “for the discovery that mature cells can be reprogrammed to become pluripotent.”

Pluripotent stem cells hold great promise in the field of regenerative medicine. Because they can propagate indefinitely, as well as give rise to every other cell type in the body (such as neurons, heart, pancreatic, and liver cells), they represent a single source of cells that could be used to replace those lost to damage or disease.

According to Wray and Fox (2016),

“It is the use of stem cells as disease models that perhaps has the most to offer in terms of immediate gain, and the most exciting development is the potential to assay potential therapeutics with induced pluripotent stem cells (iPSCs).”

But Wray and Fox (2016) later comment:

“Of particular relevance to Alzheimer’s disease is the fi ending that the expression profile of tau remains feral-like in iPSC-derived neurons until 1 year in culture. Even in cases of familial disease with the earliest onset, the disease only manifests clinically several decades after the onset of pathology and structural changes—how effectively will iPSCs recapitulate the full time course of disease-associated molecular changes?”

Tau proteins (or τ proteins, after the Greek letter by that name) are proteins that stabilise parts of the cell called “microtubules”. They are abundant in neurons of the central nervous system and are less common elsewhere, but are also expressed at very low levels in CNS astrocytes and oligodendrocytes. Pathologies and dementias of the nervous system such as Alzheimer’s disease are associated with tau proteins that have become defective and no longer stabilise microtubules properly.

The tau hypothesis of Alzheimer’s disease states that excessive or abnormal phosphorylation of tau results in the transformation of normal adult tau into PHF-tau (paired helical filament) and NFTs (neurofibrillary tangles). But it is clearly more complicated than that. Deposition of highly phosphorylated tau in the brain is the most significant neuropathological and biochemical characteristic of the group of neurodegenerative disorders termed the tauopathies. Pathological hyperphosphorylation of the microtubule-associated protein tau is characteristic of Alzheimer’s disease and the associated tauopathies. The reciprocal relationship between phosphorylation and O-GlcNAc modification of tau and reductions in O-GlcNAc levels on tau in AD brain offers motivation for the generation of potent and selective inhibitors that can effectively enhance O-GlcNAc in vertebrate brain (Yuzwa et al., 2008).

The discovery of tau fragments in these diseases suggests that tau cleavage and tau phosphorylation, both of which induce conformational changes in tau, could each have roles in disease pathogenesis. As Hanger and Wray (2010) note, the identities of the proteases responsible for degrading tau, resulting in the appearance of truncated tau species in physiological and pathological conditions, are not known.

The Bavarian psychiatrist Alois Alzheimer is traditionally credited with the first description of the most characteristic pathological brain change—neurofibrillary tangles (NFT)—of a yet-unnamed disease in a 51-year-old woman from Frankfurt am Main, who had developed dementia.

During the 1990s, the significance of tau pathology for neurodegenerative diseases, in particular for dementia of the Alzheimer Type, remained in the shadow of the amyloid based approaches. However, as the distribution pattern and overall quantity of amyloid turned out to be of limited significance for pathological staging of AD progression and symptom severity, and after detailed studies of the maturation and distribution of NFTs showing correlation with degree of cognitive decline and memory impairment in Alzheimer’s disease, Braak and Braak proposed a neuropathological staging of the gradual deposition of abnormal tau within vulnerable neurons in brain areas in the form of either NFT or neuropil threads. Post-mortem Braak staging of neurofibrillary tau tangle topographical distribution is one of the core neuropathological criteria for the diagnosis of Alzheimer’s disease.

Based on the biochemically diverse range of pathological tau proteins, Šimić and colleagues (2006) have recently reviewed a number of different approaches which have been proposed to develop new potential therapeutics. Here we discuss some of the most promising ones: inhibition of tau phosphorylation, proteolysis and aggregation, promotion of intra- and extracellular tau clearance, and stabilization of microtubules.

The recent development of candidate PET imaging tracers targeting aggregated tau (now enables not only the brain burden but also the anatomical distribution of tau pathology to be mapped directly in living subjects. One such PET tracer, 18F-AV-1451 (also known as 18F-T807), has been shown to bind selectively to paired-helical filament (PHF) tau, and to exhibit favourable kinetics, low non-specific binding and differential uptake in Alzheimer’s disease versus healthy control subjects. It has been very recently been reported that in vivo 18F-AV-1451 positron emission tomography images across the Alzheimer’s disease spectrum can be classified into patterns similar to those prescribed by Braak neuropathological staging of tau pathology (Schwarz et al., 2016).

But there’s more to tau than Alzheimer’s disease. In NBIA, iron accumulates in the basal ganglia and may be accompanied by Lewy bodies, axonal swellings and hyperphosphorylated tau depending on NBIA subtype (Arber et al., 2015). And there’s more to Alzheimer’s disease than tau. For example, results from Pooler and colleagues (Pooler et al., 2015) strongly support the hypothesis that cortical amyloid accelerates the spread of tangles throughout the cortex and amplifies tangle-associated neural system failure in AD. The story is gradually though unravelling.

Talk

Dr Selina Wray will be giving a presentation at 4 pm today in session 11 of the Alzheimer’s Research UK Research Conference entitled “Modelling tauopathy in patient-derived neutrons: good things come to those who wait?” (link here).

Recommended reading

Arber CE, Li A, Houlden H, Wray S. Insights into molecular mechanisms of disease in neurodegeneration with brain iron accumulation: unifying theories. Neuropathol Appl Neurobiol. 2015 Apr 14. doi: 10.1111/nan.12242. [Epub ahead of print].

Gilley J, Adalbert R, Coleman MP. Modelling early responses to neurodegenerative mutations in mice. Biochem Soc Trans. 2011 Aug;39(4):933-8. doi: 10.1042/BST0390933.

Hanger DP, Wray S. Tau cleavage and tau aggregation in neurodegenerative disease. Biochem Soc Trans. 2010 Aug;38(4):1016-20. doi: 10.1042/BST0381016.

Schwarz AJ, Yu P, Miller BB, Shcherbinin S, Dickson J, Navitsky M, Joshi AD, Devous MD Sr, Mintun MS Regional profiles of the candidate tau PET ligand 18F-AV-1451 recapitulate key features of Braak histopathological stages. Brain. 2016 Mar 2. pii: aww023. [Epub ahead of print].

Šimić G, Babić Leko M, Wray S, Harrington C, Delalle I, Jovanov-Milošević N, Bažadona D, Buée L, de Silva R, Di Giovanni G, Wischik C, Hof PR. Tau Protein Hyperphosphorylation and Aggregation in Alzheimer’s Disease and Other Tauopathies, and Possible Neuroprotective Strategies. Biomolecules. 2016 Jan 6;6(1). pii: E6. doi: 10.3390/biom6010006.

Wray S, Fox NC. Stem cell therapy for Alzheimer’s disease: hope or hype? Lancet Neurol. 2015 Dec 15. pii: S1474-4422(15)00382-8. doi: 10.1016/S1474-4422(15)00382-8. [Epub ahead of print].

Yuzwa SA, Macauley MS, Heinonen JE, Shan X, Dennis RJ, He Y, Whitworth GE, Stubbs KA, McEachern EJ, Davies GJ, Vocadlo DJ.29. A potent mechanism-inspired O-GlcNAcase inhibitor that blocks phosphorylation of tau in vivo. Nat Chem Biol. 2008 Aug;4(8):483-90. doi: 10.1038/nchembio.96. Epub 2008 Jun.

It’s the diagnosis and research stupid, but don’t forget about care

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drugs

Anyone linked to the UK government would prefer you not to talk about the crisis in social care. This gets in the way of shimmering spin about current dementia press releases.

But we know that the patient experience of people with dementia and carers is often destroyed by delayed discharges. If your train is late, it’s inappropriate for you to be labelled ‘a platform blocker’. This government, like the previous one, is failing to get on top of this problem.

If you’d believe the grass is greener on the dementia diagnosis front you’d be wrong. People languishing without a formal diagnosis is not right. But if we want high quality prompt diagnoses we should be able to pay for them.

Jeremy Hunt mysteriously views dementia as the ‘jewel in his crown’, but in fact there is a shared ethos between the NHS and English dementia strategy. That is, a stench of the ‘something for nothing’ culture – like paying #juniordoctors to stretch their work to seven days for the same money.

The Dementia Discovery Fund, launched today at the Alzheimer’s Research UK conference in Manchester by Jane Ellison MP, will pay for the development of new drugs for dementia. The announcement is seek to confirm that some of the world’s largest pharmaceutical companies have joined forces to seek new treatments for a group of brain diseases affecting 850,000 people in the UK.

They include Biogen, GlaxoSmithKline, Johnson and Johnson, Lilly, Pfizer and Takeda. The giant firms have signed up with Alzheimer’s Research UK to form a ground-breaking public-private partnership.

This is highly reminiscent of the approach which was taken for the development of drugs for HIV. Some time ago, ater spending a few years laying a foundation to streamline clinical testing and drug development, leaders from the US Food and Drug Administration body (“FDA”) took their Critical Path Initiative (CPI) from concept to implementation.

There remained public concerns about drug safety, dangerous imports, and rising pharmaceutical costs, much like today here in the UK for dementia. But here the UK taxpayer is in effect helping to underwrite drug development costs for these blockbuster revenue companies. Whilst political leaders use the limp mantra ‘you shouldn’t have to choose between cure and care’, in effect the choice has been made. Care is on its knees.

The famous political saying from Carville is of course ‘it’s the economy stupid, but don’t forget about healthcare.’ With the current Government’s growing economy, there is little joy from the people who can deliver potentially high quality professional care – nurses and doctors – who are unanimously demoralised and destroyed by Jeremy Hunt and his colleagues, wherever they may be.

The shambolic state of the English dementia policy could not have been made clearer by the lack of discussion of care pathways and clinical specialist nurses in dementia. What resulted was a underwhelming appalling document known as the ‘Implementation Plan’ for Dementia 2020 from the Department of Health.

The fluffy ‘health MOTs’ for people in their 40s is not evidence based at all. It is the pipedream of a non-clinical policy wonk, wishing to ensnare the ‘worried well’ into the lare of the private insurance industry, as I describe here. Nobody is of course objecting to true professional health promotion, but there are limitations to promoting ‘brain health’ – in the same ways to improve a healthy leg has limitations for you dealing with a dislocated hip or fractured neck of femur.

The relative lack of substantial professional clinical input really shone through in many areas, such as the lack of discussion of co-morbidities. Many of the ideas are gimmicks which have been recycled ad infinitum in various guises. The aim had been to assess ‘the lessons learnt’ from the only ever English dementia strategy, “Living well with dementia”, in 2009, but clearly the Department of Health cannot even been bothered to do that, not wishing perhaps to scrutinise the appalling state of social care or the high number of inappropriate referrals to memory clinic.

Or maybe the Department of Health do not want to discuss why primary care is not well placed to deliver on dementia diagnosis, when that arm of the profession is suffering a recruitment crisis, overwhelmed by bureaucracy and regulation, and is relatively grossly underfunded.

If the rest of English dementia policy were in a fit state, then a Drug Discovery Fund would be something to shout about. But the fact that there were 101 spectacular failures in drug development for dementia between 1998 and 2012 is also a fact.

None of us know what the future will bring. To be prepared is half the victory.

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Ayres Rock Chris Shibley

 

 

Through public awareness initiatives such as “Share the orange” from the Alzheimer’s Research UK charity, slowly more and more people in the general public are cottoning onto the idea that dementia is not a normal part of ageing.

An ignorance of what to expect in dementia can be very distressing. Forewarned is forearmed.

I am generally not in favour of aggressive war analogies in the context of dementia, by, say, when you’re overcoming flu, your immune system does launch an attack on a foreign species. You talk about ‘fighting the flu’. Therefore, you can defeat flu.

The problem with the analogy for dementia, however, is that you rarely hear of people who have won their fight against dementia. Defeating a type of dementia is not an unworthy aim, though.

If you do, however, decide to extend the military metaphor for dementia, then there’s no doubt for me that, as attributed to Miguel de Cervantes, “to be prepared is half the victory”.

About 16 years ago to the day, I started my Ph.D. up in Cambridge. I would visit families with dementia all around East Anglia, and do some specialised psychological assessments of areas such as memory or planning in people living with the then-called ‘frontal variant’ of frontotemporal dementia.

I came to focus on decision-making, and I found that risk taking was a much under-recognised feature of people with a type of dementia known as the behavioural variant of frontotemporal dementia, whose calling sign is quite an insidious change in behaviour and personality. This is highly relevant to personal budgets in social care, and also development of therapeutic targets (taking in work in the related area of impulsivity.)

Now, it is known, not thanks to me but thanks to a handful of specialised laboratories around the world, that your genetic blueprint you’re born with can be traced to various well defined categories of frontotemporal dementia, a type of dementia that affects the frontal and temporal bits of your brain. (They’re the parts of the brain right at the front and near your ear respectively.)

Bring the clock forward to 2016, and we now have quite a good idea of tiny parts of the cell, the basic unit of the human body, called “ribonucleosides” which seem to act funny in some of the frontotemporal dementias. This is, of course, significant as this gives us leverage to attack the dementia process – like looking for the weakest link in the enemy army.

I didn’t go to Cambridge last year. In fact, I had not been to Cambridge for a decade until recently when I was invited to give a talk on risk and dementia at one of the Cambridge Colleges.

I instead went to Australia with Chris Roberts, his wife Jayne Goodrick, and one of their daughters. Chris is presently living with a mixture of vascular dementia and Alzheimer’s dementia. Visiting Ayres Rock was my personal highlight.

Again, it’s the case that very bright researchers have worked out that changes to the blood flow around the brain can somehow lead to a process of dementia. It’s well known vascular changes in the human body can be brought about by a whole host of factors such as diet and smoking – this again gives a means of preventing the rate of progression of an enemy army.

neuroanatomy

[source here].

Knowing the plumbing of the human brain can therefore very relevant to working out how to stop the rate of decline in dementia. How well blood flows in the brain is closely linked to the health of the brain through a process called “neurovascular coupling”.

When you think of the size of the numbers of people around the world living with dementia, close to 50 million, this leaves you with two options. One is to give up altogether; the other is to build up bit by bit a detailed working knowledge of the dementias.

I know Chris, living with dementia to the best of his ability, and in an environment which can be optimised as ‘dementia friendly’ as possible, works relentlessly to campaign for recruitment into research in dementia (“Join Dementia Research”).

Working out how factors in the circulation might be progressing in Chris’ dementia would be a wonderful thing to know, and provide much greater precision for a possible therapy one day for people who have the type of dementia Chris has.

The aim of research into dementias is to gather this detailed knowledge, pool it together and share it, and think about how best it can be used to promote and protect the health of citizens. Research is an investment which is inevitably very costly due to manpower and consumables.

Nonetheless, the next step is to make sure the right mood music (and money) is in place to convert this knowledge into something meaningful for a person living with dementia. The regulatory infrastructure of course around the world needs to be able to responsive and responsible to such innovations.

I wish Chris well as he helps to launch next week’s Research Conference for Alzheimer’s Research UK up in Manchester, where other brilliant initiatives such as ‘Dementia United’ providing devolved joined up health and care services for dementia are also afoot.

Anyone involved in research knows it’s a marathon not a sprint; and most researchers I know know they’re in it for the long haul. But we can only get more detailed knowledge as, in other areas, we have a strong, high capacity, workforce making use of all available specialist talent.

You see, none of us know what the future will bring. Anything can happen to anyone at any time.

The UK, being the sixth richest country in the world, is an unique position to do this. The travesty is that social care is on its knees, and this is a painful truth for many people trying to live with dementia presently. And this needs correcting.

The future, on the other hand, might be brighter, if not necessarily orange.

 

 

 

You need to ask the right questions to get the right answers

Shibley Rahman 1 Comment
Idea concept with row of light bulbs and glowing bulb

Idea concept with row of light bulbs and glowing bulb

I think the worst aspect of the term ‘innovation’ is the term itself. For me, it more often than not conjures images of gimmicks and the snake oil salesmen of these gimmicks.

But there’s a certainly a place for ways in which people can be motivated to take an interest in his or her own health. There needs to be, nonetheless, an informed debate; for example, a healthy “health check” is no guarantee that you won’t succumb to some malady within a few years time.

I’ve known people to run a full distance on a cardiac treadmill in a hospital, with no monitored changes in heart function, only to drop dead seconds later in the hospital car park.

Nonetheless, most definitions of innovations are quite broad, and are generally doing things differently or doing different things.

It’s often said by physicians that the vast majority of a reliable diagnosis can be taken from a good history of symptoms. That I believe to be supremely the case for dementia.

I am not going to bombard you with the predicted million people living with dementia in the UK, as quite frankly if it’s your mum living with dementia that should be good enough for you to take an interest.

The question, “Have you had trouble with your memory?”, is likely to engender a lot of false positive responses as a diagnostic screening tool for dementia. A better one would be possibly, “Have you had trouble with memory but feel that your mood has been quite good?” But even this question would not be ‘fool proof’ as people can live with both dementia and depression.

There is a good ‘push’ argument against supporting a status quo in the current approach to dementia. That is, it is overly reliant on a medication solution, when the vast majority of drug research work in this area has resulted in failure. This ‘promissory hope’, of “one last push”, is needed to keep the general public engaged with this mission, and certainly helps the surpluses and profits in the short term.

Indeed, many of the arguments for ‘barriers to innovation’ can cut both ways. For example, it might be the case that in these economic challenging the times the last thing you’d want to do is to take a massive punt on redesigning diagnostic care services for dementia. Or, on the other hand, you might take the view that there’s nothing to lose.

The need for innovations to be ethical and accountable has become increasingly important under the umbrella term ‘responsible innovation’. Not all dementia is Alzheimer’s disease, and yet we are led down the Alzheimer’s path continually by the media. If there were a ‘biomarker’ for Alzheimer’s disease which was very specific and sensitive, and inexpensive to get the results of, would this information help you?

The answer is possibly – but if this were coupled with a private insurance system, you could also find your insurance premiums going through the roof, even if you were to have forty years of healthy living ahead of you.

Certainly the more expensive the investigation doesn’t make it more fool-proof. I’ve known patients with a clear diagnosis of frontal dementia who’ve had plum normal investigations including state of the art MRI scans. And likewise people with radiological atrophy on MRI who don’t have dementia.

I see innovations in dementia as a tool in dementia diagnosis, support and care, but only if used responsibly. Otherwise more noise can be added to the signal, as was clearly the case for incentivising primary care to run case finding tests for dementia. The very predictable unintended consequences that the number of false positive diagnoses of dementia also shot up, although ignorance is possibly worse than fear.

Ask any corporate strategist about the future and he or she will always tell you some of it is about turning threats into opportunities. For me, if you cut through the shill and waffle, an intelligent way to redesigning dementia care isn’t a bad idea, even if I would not necessarily start from here.

 

 

 

This is the talk I will be giving for #WHIS16, the World Health Innovation Summit in Cumbria, on innovation as a societal response to dementia.

Fake involvement is not enough. Genuine participation matters.

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Lottery

There has been a disturbing tendency for the word ‘social movements’ to become bastardised for marketing a theme or even business product. I sympathise with people needing to pay their mortgages, but this approach has been to the detriment of real participation of those people whom Prof Edgar Cahn referred to as ‘no more throw away people’. Slick marketing, like pornography for the US Supreme Court, can indeed be spotted a mile off – you recognise it when you see it.

The word ‘co-production’ faces a similar setback. However, it is actually quite hard to escape what co-production really means, as defined below as an example.

“Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change.”
(Boyle et al., 2010).

Fake ‘involvement’ of patient groups I think does quite a lot of damage. This at one level is the notorious ‘zero sum gain’ – in that resources consumed A deprives resources for B. As an example, it would be dead easy for Big Charity to donate money to the Dementia Alliance International, a group run by and run for people living with dementia. But the fact this does not readily happen is an epiphenomenon entirely of the need of Big Charity to retain control as to who writes the script. Or put another way, who is in the room.

But secondly an illusion of control is deeply fraudulent in itself. The “illusion of control”, defined as various forms, is the tendency for people to overestimate their ability to control events; for example, it occurs when someone feels a sense of control over outcomes that they demonstrably do not influence.

There are some well known examples of this.

You in an orchard, and you choose an apple which tastes delicious. You assume you are very skilled at choosing apples (when in fact the whole batch happens to be good today).

Another good example is that you enter the National Lottery and in fact you win millions. You assume that this is (partly) a result of how good your lucky numbers are. However, lotteries are totally random so you can’t influence them with the numbers you choose. Although most of us acknowledge this as a statement of fact rather than an opinion, we still harbour an inkling that maybe it does matter which numbers we choose).

Available evidence suggests that an important factor in development of this illusion is the personal involvement of participants who are trying to obtain the outcome (reviewed by Yarritu, Matute and Vadillo, 2014).

It is possible that pseudo involvement or pseudo engagement through regional working groups might be doing more damage than active democracy. I think a tell-tale sign of this is when in a double act of a person with dementia and a person without dementia the person without dementia does nearly 50% (or more) of the talking.

Another good example is where in ‘involving a person with dementia’, there is a “working group” chaired by, and the agenda set by, a person without a dementia. That person without dementia is in full control of the narrative.

This illusion of control has been discussed extensively elsewhere.

“Such involvement is frequently held up as empowering audiences and enhancing democracy. Indeed, the possibility of audiences creating their own content has led to the idea of reconceptualising traditional consumers as, in Jay Rosen’s now famous definition, ‘the people formerly known as the audience’. But what is being offered is a ‘simulacrum’ of engagement. The user is given the illusion of control – while all the time the underlying power relationships remain unchallenged. It has become commonplace to argue that policy-makers should act to ‘increase citizens’ participation in the commissioning and production of news in order to ensure that “the public interest” is no longer defined in private’ (for example Co-ordinating Committee for Media Reform 2012). How this might be achieved is less than clear and the belief that it will increase plurality may be ill-founded’.

(Scullion et al., 2013)

The traditional approach to the  work on the “illusion of control” has been framed in motivational terms (e.g., Langer, 1975).

From this perspective, people’s judgments of control are influenced by subjective needs related with the maintenance and enhancement of the self-esteem (e.g., Heider, 1958). And as such it might be better to call involvement initiatives for what they also achieve – peer-support as well as boosting people’s self confidence in talking at public events.

It has been shown that the sense of having control has benefits for well-being (e.g., Bandura, 1989; Lefcourt, 1973).

As Bandura (1989) writes:

“They are full of impediments, failures, adversities, setbacks, frustrations, and inequities. People must have a robust sense of personal efficacy to sustain the perseverant effort needed to succeed. Self-doubts can set in quickly after some failures or reverses. The important matter is not that difficulties arouse self-doubt, which is a natural im- mediate reaction, but the speed of recovery of perceived self-efficacy from difficulties.”

This reflects a personal adage of mine – it’s not how you fall, it’s how you get up. And also makes complete sense – in that the invitation to go to events or conferences acts as a counterpoint to being given a diagnosis of dementia which has potentially a profound impact on identity.

But Kate Swaffer’s construct of ‘prescribed disengagement’ is significantly more relevant here, I feel.

Undeniably, one must set one’s sights way above “involvement”.

Promoted by the Scottish jurisdiction notably, a human “rights based approach” is about empowering people to know and claim their rights and increasing the ability and accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights.

There are some underlying principles which are of fundamental importance in applying a human rights based approach in practice. These are the so-called PANEL principles.

participation
accountability
non-discrimination and equality
empowerment and
legality.

And these remain relevant too to the actual way care and support are approached.

As the Scottish Human Rights website explains,

“Everyone has the right to participate in decisions which affect their human rights. Participation must be active, free, meaningful and give attention to issues of accessibility, including access to information in a form and a language which can be understood.

In relation to the care of older people this means that individuals should participate in all decisions about the care and support they are receiving. This could range from participation in the commissioning and procurement of social care services by local authorities to participating in daily decisions about the care and support being received.”

Latterly, there has been such enormous arrogance that consistently people with dementia, if invited to conferences about dementia at all, are invited at the last minute giving all the semblance of an ‘after thought’ for marketing purposes.

One wonders why the named speakers in the programme are so reluctant to keep up a fuss, even those who have an involvement string to their bow.

Exclusion is no laughing matter parodies excepted.

Take for example a woman of the year who is in fact a man (though please note that this is a joke).

CcN4GSBXEAAAGf1.jpg-large

But this sadly is not a joke. One year ago, Saudi Arabia hosted an all-male ‘women’s rights’ conference as reported here.

The article notes that:

“Saudi Arabia’s laughably prestigious University of Qassim played host to one of the biggest women’s rights conferences in the Arab world in 2012. Ironically, the institution managed to hold the event without the advice or attendance of a single woman.”

In the market which has developed in health and social care, it has been convenient to formalise the ‘invisible hand’ of Adam Smith into a broker. But questions about whether there is such a thing as a free broker, or whether fake involvement is seriously damaging to your genuine participation, must surely be asked.
References

Bandura A. (1989). Human agency in social cognitive theory. American Psychologist, 44(9), 1175–1184. doi: 10.1037/0003-066X.44.9.1175.

Boyle, D, Coote, A, Sherwood, C, Slay, J. (2009) Right here, right now: Taking co-production into the mainstream. NEF/NESTA/The Lab.

Heider F. (1958). The psychology of interpersonal relation. New York, NY: Wiley.

Langer E. J. (1975). The illusion of control. Journal of Personality and Social Psychology, 32, 311–328. doi: 10.1037/0022-3514.32.2.311

Lefcourt H. M. (1973). The function of the illusions of control and freedom. American Psychologist, 28, 417–425. doi: 10.1037/h0034639.

Scullion, R, Gerodimos, R, Jackson, D, Lilleker, D. (2013) The Media, Political Participation and Empowerment. Routledge Publishers.

Yarritu I, Matute H, Vadillo MA. Illusion of control: the role of personal involvement. Exp Psychol. 2014 Jan 1;61(1):38-47. doi: 10.1027/1618-3169/a000225.

Kate Swaffer is admitted onto the World Dementia Council

Shibley Rahman 2 Comments

KS

 

Late on Wednesday it was announced that the decision has been taken to admit Kate Swaffer to the World Dementia Council.

Kate Swaffer is Chair of Dementia Alliance International (“DAI”), which is a leading non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease. DAI is an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

 

Kate, from Adelaide in South Australia, was diagnosed with semantic dementia – a form of fronto-temporal dementia – in 2008 at the age of 49.

Since getting her diagnosis Kate has become a campaigner, speaker and accomplished writer on dementia issues. In January 2016, her book ‘What the hell happened to my brain?” was published, and has rapidly become a landmark contribution of a detailed account of a lived experience with dementia.

In this excerpt from her first book about dementia, What the hell happened to my brain, Kate Swaffer has written this:

Subsequent to my being diagnosed with younger onset dementia at the age of 49, health care professionals and service providers all told me the same thing: “to give up work, give up study and go home and live for the time I had left.” On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness. I was also told to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time family carer.  

Very quickly I termed this Prescribed Disengagement™, and thankfully I eventually chose to ignore it. Because Prescribed Disengagement™’ is a term I came up with, I was advised to trademark it before someone else did, and hence have done so.

Kate last year was awarded a distinction in her Master of Science in dementia care from the University of Wollongong.

 

The statement from the Dementia Alliance International reads as follows.

“Dementia Alliance International (DAI) Chair Kate Swaffer from Australia has today officially become a member of the World Dementia Council, the second person with dementia to join this council. This is an important and significant appointment for DAI, and for people with dementia globally.  She joins another DAI member, who is also Vice Chair of the European Dementia Working Group, Hilary Doxford from the UK.”

Established by the last UK government, the World Dementia Council has the stated mission to champion dementia research and development and unlock investment around the world.

 

The membership of the Council is currently wide-ranging, but includes senior figures in dementia policy internationally.

On 16 October 2014, I wrote an open letter to DAI members which was indeed published on the official DAI blog, establishing my wish for the World Dementia Council to have members who are currently living with dementia. At the time, there were no such members, despite there being 47.5 million people estimated to be currently living with dementia in the world.

 

Kate’s admission to the World Dementia Council is a highly significant event.

DAI has been working towards full access for people with dementia to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is a global tool for achieving social change, this second appointment is particularly significant. Article 19 of the Convention is the right to live independently and to be included in the community. Indeed, Prof Peter Mittler is due to be presenting on this, on behalf of DAI, at the Alzheimer’s International Conference in Hungary in April 2016.

Article 29 on “participation in public and political life” enshrines an obligation for State Parties “to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others.”

 

The four major prongs of the World Dementia Council’s work currently are integrated development, “optimising the path of medicines from research through to market by reducing barriers & encouraging regulatory flexibility”; finance and incentives – “looking at ways to increase the relatively low investment in funding dementia innovation by exploring new types of funding product”; open science – “unleashing the potential of open science for sharing information and knowledge to accelerate progress in developing new treatments and care approaches”; and public health/prevention – “The Council is also beginning an evidence review into existing research on how risk factors such as diabetes and heart disease relate to dementia, as well as looking into public health messaging on lifestyle and prevention.”

Even with the development of new drugs to delay the progression of the dementias, the leading cause of which is Alzheimer’s disease in the world, the need for prevention of progression of diseases through both cognitive and non-cognitive therapies will be essential. Kate’s input as a person living with dementia and as an accomplished student of dementia herself will be unique.