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My three abstracts to be submitted for @AlzheimerEurope this year: 2 'people' and 1 'policy'

I’ve decided to apply to go to the Alzheimer’s Europe conference this year.

It is being held in my birth place, Glasgow.

Details are here.

 

I follow @AlzheimerEurope

and they follow me.

 

Here are my three topics.

Policy (Socio-economic cost of dementia and financing of care): Would knowing your genetic risk for dementia change the way you behave with the NHS?

People (Perception and identity): An analysis of 75 English language web articles on the G8 dementia summit

People (Perception and identity): Who were the biggest winners and losers of the G8 dementia summit? My survey of 96 persons in the UK without dementia.

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A person newly diagnosed with dementia has a question for primary care, and primary care should know the answer

GP seeing his patient

Picture this.

It’s a busy GP morning surgery in London.

A patient in his 50s, newly diagnosed with Alzheimer’s disease, a condition which causes a progressive decline in structure and function of the brain, has a simple question off his GP.

“Now that I know that I have Alzheimer’s disease, how best can I look after my condition?”

A change in emphasis of the NHS towards proactive care is now long overdue.

At this point, the patient, in a busy office job in Clapham, has some worsening problems with his short term memory, but has no other outward features of his disease.

His social interactions are otherwise normal.

A GP thus far might have been tempted to reach for her prescription pad.

A small slug of donepezil – to be prescribed by someone – after all might produce some benefit in memory and attention in the short term, but the GP warns her patient that the drug will not ultimately slow down progression consistent with NICE guidelines.

It’s clear to me that primary care must have a decent answer to this common question.

Living well is a philosophy of life. It is not achieved through the magic bullet of a pill.

This means that that the GP’s patient, while the dementia may not have advanced much in the years to come, can know what adaptations or assistive technologies might be available.

A GP will have to be confident in her knowledge of the dementias. This is an operational issue for NHS England to sort out.

He might become aware of how his own house can best be designed. Disorientation, due to problems in spatial memory and/or attention, can be a prominent feature of early Alzheimer’s disease. So there are positive things a person with dementia might be able to do, say regarding signage, in his own home.

This might be further reflected in the environment of any hospital setting which the patient may later encounter.

Training for the current GP is likely to differ somewhat from the training of the GP in future.

I think the compulsory stints in hospital will have to go to make way for training that reflects a GP being able to identify the needs of the person newly diagnosed with dementia in the community.

People will need to receive a more holistic level of support, with all their physical, mental and social needs taken into account, rather than being treated separately for each condition.

Therefore the patient becomes a person – not a collection of medical problem lists to be treated with different drugs.

Instead of people being pushed from pillar to post within the system, repeating information and investigations countless times, services will need to be much better organised around the beliefs, concerns, expectations or needs of the person.

There are operational ways of doing this. A great way to do this would be to appoint a named professional to coordinate their care and same day telephone consultations if needed. Political parties may differ on how they might deliver this, but the idea – and it is a very powerful one – is substantially the same.

One can easily appreciate that people want to set goals for their care and to be supported to understand the care proposed for them.

But think about that GP’s patient newly diagnosed with dementia.

It turns out he wants to focus on keeping well and maintaining his own particular independence and dignity.

He wants to stay close to his families and friends.

He wants to play an active part in his community.

Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different.

Once you’ve met one person with dementia, you’ve done exactly that: you happen to have met one person with dementia.

Care and support plans should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person. It’s going to be, further, important to be aware of those individuals’ relationships with the rest of the community and society. People are always stronger together.

And technology should’t be necessarily feared.

Hopefully a future NHS which is comprehensive, universal and free at the point of need will be able to cope, especially as technology gets more sophisticated, and cheaper.

Improvements in information and technology  could support people to take control their own care, providing people with easier access to their own medical information, online booking of appointments and ordering repeat prescriptions.

That GP could herself be supported to enable this, working with other services including district nurses and other community nurses.

And note that this person with dementia is not particularly old.

The ability of the GP to be able to answer that question on how best her patient can lead his life cannot be a reflection of the so-called ‘burden’ of older people on society.

Times are definitely changing.

Primary care is undergoing a silent transformation allowing people to live well with dementia.

And note one thing.

I never told you once which party the patient voted for, and who is currently in Government at the time of this scenario.

Bring it on, I say.

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Are medical pharmaceutical innovations for dementia to be welcomed or feared?

The general starting point is that risk taking is essential for innovation to succeed.

“Forbes” magazine recently put it this way:

Risk taking is not about being foolhardy.  The innovation risk-taker brings good judgment and self-awareness to everything, but understands that there is a point – just there, beyond the safe, beyond the secure – where there are disproportionate rewards.  In any organization, there are plenty of fumbles, missteps, train wrecks, and failures.  But these are less the result of risk-taking, and more of ineptitude.  Look for the places in your organization where there is lots of homework being done, lots of direct, plainspoken conversation and a strong sense of fun, and you’ll find the risk-takers there. Risk-takers resist the temptation of the status quo and continuously push organizations into new – and quite possibly innovative – areas.”

The Medical Innovations Bill [2014] has been published as follows:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/285325/The_Medical_Innovation_Bill.pdf

The regulatory underpinning is clear.

statutory underpinning

And so are the caveats.

caveats

Risk taking and patient safety have always been two conflicts for the medical profession.

A central ethical (and professional regulatory) tenet is ‘primum non nocere‘ – at first do no harm.

The question is partly a question of semantics: can a physician expose to a patient to some degree of harm knowingly, or can a physician expose a patient to that harm recklessly? And should the law or regulators stop this? The General Medical Council has of course a statutory underpinning in the s.1(1) Medical Act [1983] to promote patient safety – this is unambigious.

Part of the problem is that it can be in real life to ascertain what precisely is the degree of harm which can be exposed. For example, even with the most ‘simple’ of scenarios, it can be difficulties to work out what proportion of patients have had ‘significant’ side effects of common medications such as high cholesterol ‘busting’ drugs such as statins.

A further problem is how the regulators deal with the issue of whether it is permissible to allow common side effects of rare drugs compared to rare side effects of common drugs.

And rare drugs can be used to ‘treat’ common conditions.

Of the 800,000 people living with dementia, it is uncertain how many people will want a medication to put a complete stop to a dementia illness, though one could have a good guess.

Conceptually, it’s also difficult to ascertain how many people will want a dementia illness to be slowed down but there would still remain a degree of inevitability about the condition.

And yet a further complication for this, for dementia, is that people with dementia legally might lack capacity – formally lack the lgal ability to make ‘competent’ decisions.

The “Bolam test” has always been highly significant for the clinical negligence experts.

Bolam v Friern Hospital Management Committee [1957] 1 WLR 582 is an English tort law case that lays down the typical rule for assessing the appropriate standard of reasonable care in negligence cases involving skilled professionals (e.g. doctors): the Bolam test.

Where the defendant has represented him or herself as having more than average skills and abilities, this test expects standards which must be in accordance with a responsible body of opinion, even if others differ in opinion. In other words, the Bolam test states that “If a doctor reaches the standard of a responsible body of medical opinion, he is not negligent”.

Meanwhile, for the Judiciary, the case Simms v Simms and Another/A v A (A Child) and Another, Family Division from 17 December 2002 [2002] EWHC 2734 (Fam), [2003] Fam. 83, in front of Dame Elizabeth Butler-Sloss P is a pivotal one.

In the judgment, Butler-Sloss notes that:

“48 To the question: “Is there a responsible body of medical opinion which would support the PPS treatment within the United Kingdom?” the answer in one sense is unclear. This is untried treatment and there is so far no validation of the experimental work done in Japan. The Bolam test ought not to be allowed to inhibit medical progress. And it is clear that if one waited for the Bolam test to be complied with to its fullest extent, no innovative work such as the use of penicillin or performing heart transplant surgery would ever be attempted: see Lord Diplock in Sidaway v Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital [1985] AC 871, 893. I do, however, have evidence from responsible medical opinion which does not reject the research. Mr T is a very experienced and clearly very responsible neurosurgeon. He has carefully thought through at considerable length in his two reports, the research, its implications, the uncertainties, the risks and the doubts about the benefits to these two patients. He has come to the conclusion that “it is in the best interests of [JS and JA] to be treated and I would personally be prepared to carry out that treatment”.

The comment ‘per curiam‘ runs as follows:

“The Bolam test ought not to be allowed to inhibit medical progress since it is clear that if one waited for that test to be complied with to its fullest no innovative work in medicine would ever be attempted (post, para 48).”

Iain Chalmers and Lester Firkins of the James Lind Initiative, Oxford, n a letter to the British Medical Journal on 23 April 2014 wrote as follows:

“We have direct experience of the adverse consequence of an important omission from Judge Butler-Sloss’s judgement.”

“We co-chaired the MRC Prion-1 trial steering committee at the time (17 Dec 2002) that the father of a young man with variant Creutzfeld-Jakob Disease (vCJD) appealed to the High Court for permission to seek treatment for his son using pentosan polysulphate injected into the brain. The father believed that the drug might slow his son’s decline because it appeared to have done this in an animal model of the disease studied in Japan. Judge Butler-Sloss granted permission for the father to seek treatment for his son, and similar judgements were made subsequently in respect of other sufferers of vCJD.”

“In making her ruling Judge Butler-Sloss suggested that treatment with penicillin might never have been attempted if the Bolam principle had been applied. What she failed to do was to require organised, prospective documentation and publication of the characteristics and progress of patients receiving pentosan polysulphate for vCJD, as had happened with the first series of cases treated with the penicillin. The consequence of this important omission from her judgement has been that patients, their parents, and the people involved in the PRION 1 trial and other related research remained and remain unnecessarily ignorant about the possible benefits and harms of this proposed treatment.”

And the ‘degree of risk’ is important according to previous case law.

In, for example, Sidaway v Bethlem Royal Hospital Governors [1985] AC 871, the material facts themselves are very interesting.

The claimant suffered from pain in her neck, right shoulder, and arms. Her neurosurgeon took her consent for cervical cord decompression, but did not include in his explanation the fact that in less than 1% of the cases, the said decompression caused paraplegia. She developed paraplegia after the spinal operation.

Rejecting her claim for damages, the court held that consent did not require an elaborate explanation of remote side effects. In dissent, Lord Scarman said that the Bolam principle should not apply to the issue of informed consent and that a doctor should have a duty to tell the patient of the inherent and material risk of the treatment proposed.

Crucial to all this, “it’s the consent stupid” – but here the law is complicated for anti-dementia drugs for people whose dementia symptomatically is advanced sufficiently such that individuals lack consent (and may have to have decisions made in their best interests).

The relevant clause is s.1(8):

consent

In the first ‘Google Talk’ ever to be held in the House of Lords, a panel featuring Max Pemberton and Lord Saatchi includes opinions such as how patients with only six months to live, whose chances of survival, are quite desperate to try any treatments, even if they have a low chance of success.

This is not an insignificant argument.

Specifically, do the GSK-3 inhibitors ‘offer a ray of hope‘ for people with dementia?

They’re ‘new kids on the block’ which might “stop dementia in its tracks”.

The biochemical problems with this class of drugs are elegantly described by the authors:

“The main disadvantages of the first group of discovered GSK-3 inhibitors were their lack of selectivity and the competition with ATP for its binding site. Apart from GSK-3 inhibition, these compounds were able to inhibit other kinases such as CDK1 or CDK2. Although the lack of selectivity is a disadvantage in the development of a potential AD therapy, the therapeutic application for the treatment of parenchyma renal diseases of CDK/GSK-3 inhibitors have been recently described. CDKs and GSK-3 have been recently recognised as key players in the progression and regression of many kidney diseases.”

And the authors couldn’t be clearer:

“However, typically, there are two major concerns for the clinical use of GSK-3 inhibitors for chronic treatments such as that required for AD. First, since GSK-3 plays important roles in so many tissues, the risk of severe side effects is present.”

But put yourself in the shoes of the person with a dementia who might be a candidate for such a drug, in the early stage of the dementia, who has legal mental capacity.

Would you knowingly like to take the risk of taking a drug that could stop your dementia and give you a massively improved quality of life, or would you like to take the risk of having the drug ruin your life forever cutting short any quality of life by many years?

My concern is that neither the medical nor the legal profession have the sufficient expertise to make such tricky ethical decisions.

I once remember the brilliant LJ Laws talking about the difficulty for senior Judges if they wished to impose ethical moral judgments on their complicated legal judgments to do with social justice.

That comment has made a longlasting impact on my view of the law, in fact.

And yet my gut instinct is to refrain to think about innovators on the fringe of wackiness and insanity.

I once had the honour of meeting Dr Walshe.

I remember looking up his paper on penicillamine, in the late 1960s, in the library of the National Hospital for Neurology nad Neurosurgery at Queen Square. This paper uniquely was proposing a novel innovation in therapy for Wilson’s disease, an inherited problem with copper metabolism which if unchecked could cause liver cirrhosis or dementia.

I met him in fact at the Royal College of Physicians at a meeting on orphan drugs in medicine.

Anyway, I look forward to resolution of the legal debates to do with medical innovation. I understand that the General Medical Council will simply wish members of their Register to uphold the law whatever that is in the future. The problem of course comes if the case law conflicts with the staute law even negligently or innocently.

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Compassion like smiles can't be faked

One management ethos is ‘make up an arbitrary targets, and follow them at a molecular level’.

smile

Targets are intrinsically rewarding for managers who want to be seen to be doing something.

A million dementia friends doesn’t necessarily mean an improved understanding of dementia.

There’s no point denying compassion, meticulously cultivated in medicine, nursing and social care training, is pivotal.

It is also crucially important in basic humanity, whether you believe in society or not.

Compassion and leadership are areas of motherhood and apple pie.

But the idea of ‘compassion on demand’ has put shivers up people.

All political parties have been especially bad at this approach to the caring professions, some more than others perhaps.

Liberalising the market has seen its own unintended consequences.

What is clear is that regulation is needed to safeguard vulnerable individuals.

Take for example what has happened in the National Health Service.

There is no doubt that some targets are useful – e.g. cancer waiting times – but some targets appear to have been there for the benefit of the managers, local and national politics, rather than quality of health care.

It might be true that many people are simply not as happy as they should be.

A study reported in the Daily Mail, from some time ago, throws some light on this, using the uSwitch.com European Quality of Life Index. Britain is the worst place in Europe to live despite offering the biggest salaries, a study revealed today. Researchers weighed up official data for ten European countries, including France, Spain, Germany, Italy, Sweden and Poland. High incomes in the UK are cancelled out by long working hours, poor annual leave, rising food and fuel bills and a lack of sunshine.

Take, for example, “the simple smile”.

A smile is a facial expression formed by flexing the muscles near both ends of the mouth.

Among humans, it is customarily an expression denoting pleasure, happiness, or amusement, but can also be an involuntary expression of anxiety, in which case it is known as a grimace.

Cross-cultural studies have shown that smiling is a means of communicating emotions throughout the world, but there are large difference between different cultures.

Although many different types of smiles have been identified and studied, researchers have devoted particular attention to an anatomical distinction first recognised by French neurologist Guillaume Duchenne. While conducting research on the physiology of facial expressions in the mid-nineteenth century, Duchenne identified two distinct types of smiles.

A Duchenne smile involves contraction of both the zygomatic major muscle (which raises the corners of the mouth) and the orbicularis oculi muscle (which raises the cheeks and forms crow’s feet around the eyes).

A non-Duchenne smile involves only the zygomatic major muscle.

Many researchers believe that Duchenne smiles indicate genuine spontaneous emotions since most people cannot voluntarily contract the outer portion of the orbicularis oculi muscle.

So, in the same way you can’t physiologically fake a smile, you can’t fake happiness.

You can’t as such ‘fake targets’ but you can certainly game them.

It might not be obvious to people from non-clinical backgrounds that an understaffed health service will find it tough to deliver care to their standards.

Whether clinical regulators care in reality about an under-resourced NHS truly functions is up to them.

How they deal with whistleblowers speaking out safely about the NHS is up to them.

We do know that NHS managers like ‘shiny products’.

But what is clear is that selling compassion is therefore as unconvincing as faking a smile.

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Like Matisse's artwork, living well with dementia is a triumph of hope over pessimism

You can feel it from start to finish.

Matisse is innovation all over.

It’s about experimenting.

It’s about not being frightened of failure.

It’s about not worrying what people think of you.

It’s about cracking a few eggs to make an omelette.

It was a delight to go to London SE1 “Tate Modern” to see “Henri Matisse: The Cut-Outs” this afternoon.

A dementia expert is reputed today as saying that Alzheimer’s disease impacts ‘not only color, awareness and your ability to process [things] but also your field of vision.’

‘By then your brain says “I can’t deal with this data coming from two eyes” and it says “I’ll just pay attention to one.”

‘You lose all depth of perception, you’re not able to figure out [if things are] three-dimensional or two-dimensional.’

And indeed it’s scary stuff.

I am unable to bring you the image as it would be a breach of copyright.

I object very strongly to these scare tactics.

But they’re utterly in keeping with the “timebomb” school of reporting of dementia.

The facts are as follow.

Vision is not affected in early Alzheimer’s disease as the part of the brain which is typically affected are the hippocampus and entorhinal cortex, a part of the brain near the ear.

The visual areas are somewhere completely different.

Alzheimer’s disease is the most common type of dementia worldwide, though there are about 100 different types of dementia.

There might be a case for saying vision is affected in some other types of dementia, for example visual hallucinations in diffuse lewy body disease or in 3D visual perception as in posterior cortical atrophy.

But this is completely different.

The advertising campaign is in fact disgusting, but entirely in keeping with how corporate-behaving charities can resort to shock-doctrine type tactics.

In contrast, Matisse is a triumph of hope over pessimism.

Matisse 1Matisse 2Matisse 3Matisse 4

It’s brilliant that, while Matisse’s own movement was severely limited, in “The Acrobats” he was able to depict bodies in extremes of motion.

The assistants would clamber around the giant pictures with pin cushions and hammers, realising Matisse’s vision.

The colour was sensational, at a time when this was not the “done thing” in art at the time.

In fact, Matisse epitomises everything which the doom-mongers, sometimes ably assisted by some dementia charities and the media, portray dementia to be.

Living well with dementia for me is about the assets-based approach.

It’s about celebrating what people can do as individuals, rather than what they can’t do.

It’s not about propelling our fellow citizens into an early grave.

I know which world I prefer to inhabit.

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Norman McNamara is successfully turning the tide on dodgy cultural metaphors in dementia media

Tides are a popular cultural metaphor in dementia communications.

For example, it wasn’t that long ago that Alistair Burns, NHS England’s lead on dementia, was ‘turning the tide’ on numbers of people living with dementia.

Worldwide, this tide had been going in the opposite direction according to the Lancet.

Similarly, Canada was talking about the ‘rising tide’ of dementia.

Military constructions in unison with this tide are common too.

Kensington spoke of a ‘D day’ as well as ‘turning the tide’.

 

A further discussion here makes for interesting reading:

“[This] report runs with these metaphors much further, however, starting with the report title – Rising Tide: The Impact of Dementia on Canadian Society, the front cover, and continuing throughout.

The front cover illustrations, notably, are super-imposed with a blue transparency suggesting a metaphorical submersion in water. Three bar graphs, claiming to scientifically portray the numbers of people with dementia and the related “costs to Canadians for dementia care,” reach like waves over a pixelated map of Canada which in itself suggests a nation in danger of crumbling apart because of the supposed dementia burden (p. 1). Overall, between the title and the incorporation of flood-like graphics and apparently objective, scientific, and monetary facts, the front cover establishes the rising tide discourse that appears throughout the report implying that dementia is a concrete threat to an imagined Canadian population and the society, health system, and economy it cherishes.

Similarly, the four section cover pages throughout the document are superimposed with blue, and all the tables are titled and shaded in blue, as are the main titles within the text. Water, water everywhere. Additionally, the image of a rising tide is further constructed with words like surge and overwhelm: “The predicted surge in dementia cases will certainly overwhelm Canada’s health care system unless specific and targeted action is taken” (p.2 ). Even the repeated use of the words “impact” and “pressure” is evocative of a tsunami or rising tide crashing into the Canadian population, economy, and health care system (pp. 3, 5, 6, 8, 28, 31, 33).

Finally, the policy document is also inundated with huge, billion dollar amounts in both the text and the multiple tables which further works to present dementia as a threatening rising tide because of its predicted, catastrophic expense. To sum up, the IBCC report states: “At no other point in the history of Canada has there ever been such an urgent demographic imperative to step up to the challenge of improving acute care for older adults” (Donnelly et al., 2011, p. 84, emphasis added). ”

 

 

 

But anyway, here is Norman McNamara, living with lewy body dementia, talking about his tide.

 

The Tide of Life

Today was a glorious day in Torquay, and the sun was high in the sky, clear blue as long as the eye could see and the world was looking good. My darling wife and I sat on a bench overlooking the harbour and watched the world go by. Sometimes I look at her and I know she is thinking about our time together and how long days like this will last. Moving here was the best thing we ever did and no amount of persuasion or cash could ever tempt us back! This is our paradise, our dream come true and our home now, but, with the Dementia looming over us would it still be in a few years time?

As I watched the tide ebb and flow and the waves come in one after the other I suddenly thought that life was very similar to the waves, always there, always ongoing, and never-ending. I’m a great believer that no matter what happens in this world Life will always find a way… and that the human race will always survive. (Ever the optimist)

This set me thinking about my Dementia and I started to compare the Dementia to the waves. As I have good days and bad days I thought it’s just like the illness coming and going in waves, and when I have bad days it’s just the same as being stormy at sea. Someone once said “That time and tide wait for no one”How true this is about life itself?

Yes we can control some aspects in our life, and to a great degree we can influence what happens to us, but what we cannot control are the time and tides of life that keep coming no matter what.

At this point I turned and looked at the love of my life, her eyes still young and smile still as vibrant as the day we met…

“You were miles away then, where were you? She asks. “I was here darling”, I replied, and always will be. No matter what the future holds nothing will ever change, the fact that we chased our dream… caught it… and embraced it with vigour… And I wouldn’t want to be anywhere else or anywhere nicer than where we live now… They have predicted rain from Sunday onwards but do you know what? I don’t care; even the rain seems OK at the moment LOL…

Norrms xxxxxxxxxxxxxxxxxxxx

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Detailed results from twelve academics about their perception of the G8 Dementia Summit

As you’ll know, I had the pleasure of returning to Scotland for the Scottish Clinical Dementia Research Network one-day conference held on 24 March 2014 at the Beardmore Hotel Glasgow (nr Dalmuir), on perceptions of the G8 Dementia conference held in December 2013.

I am providing the answers verbatim so that you can see the exact wording of them.

All the delegates were people who had been following this conference, but all reported an academic interest.

I have already reported the 88 responses from the general public about their perception of this conference. This work identified quite clearly who were perceived to be the biggest ‘winners and losers’.

 

1. What do you feel the Summit set out to achieve?

1 Its own perception of beliefs.
2 To raise awareness and treatment: showing huge increases in numbers.
3 To encourage international cooperation.
4 Raise the profile of Alzheimer’s disease; improve the profile of politicians.
5 Improve biological research; boost Pharma funding.
6 Increase research; better coordination; raise profile of dementia; and .dementia research.
7 Information; learning.
8
9
10
11 Don’t know. Window dressing?
12 To be seen to be doing something.

 

2. Do you have any concerns about the way the Summit was conducted?

1 More about early intervention; but what about those who already suffer?
2 Yes – final reports not given.
3
4 I have limited knowledge of this area.
5 Scared people with military language; no mention of wellbeing; several opinion leaders not advocating living well with dementia.
6 No.
7 Not talking to people who understand people are different.
8
9
10
11 Hard to tell who was invited but live streaming all very well but hard to follow it during a busy day at work. Seemed to have a pre-determined outcome/agenda. Ignores the needs of people currently living with dementia.
12 1. Language used – i.e. cure, timebomb 2. What about people who are already living with dementia and their carers?

 

 3. What do you think are realistic positive outcomes of the Summit?

1
2
3 Greater awareness at all levels.
4
5
6 Raised profile of dementia.
7 Break down barriers.
8
9
10
11 Gave a certain focus to dementia but the notion of finding a cure by 2025 seems like a hostage to fortune. Would be great if that was a realistic goal but not sure it is.
12 Not sure.

 

4. Do you feel there are currently negative perceptions of people with dementia?

1
2
3
4 Yes – mental health issues may still be identified; poorly understood by the general public.
5 Yes – everywhere.
6
7 Treat like kids – no respect.
8
9 Some – dithering, challenging, old.
10 Yes – a lot of fear.
11 Yes. Also negative perceptions of older people generally. This has implications at all fronts of the dementia diagnosis – diagnosis, treatment(s), end of life. The .media doesn’t help either.
12

 

5. Do you feel there are currently positive perceptions of people with dementia?

1
2 Yes – positive perception increasing.
3
4 Possibly but in very small pockets.
5 Yes – but we need to stop all this “otherness” nonsense.
6
7 Within informed sectors.
8
9
10 No.
11 To an extent, because I am aware of people living well with dementia but it is countered by lots of celebrities talking (mainly) about their dire experiences and the way that the media write about dementia.
12

 

6. Ultimately, do you feel the Summit will change perceptions of people with dementia?

1
2
3
4
5 Make everyone think Alzheimer’s = Dementia (simply.)
6 Yes, it’s the start of a slow process.
7
8
9
10
11
12

 

7. How would you have done things differently in the Summit?

1
2 Don’t know: one way would be to increase funding to every aspect.
3
4
5 1. wider engagement; 2. Invest in more care and support; 3. Add in medical humanities; 4. Think about stigma.
6
7
8
9
10
11 Don’t know.
12 Focus on cause, care/treatment + living well/care.

 

8. How do you feel about the sharing of personal clinical data to improve research and treatment initiatives for dementia?

1
2 No problem here – Diabetes Scotland already does this.
3 Depends on maintenance of confidentiality. Not altogether clear at the moment.
4 Anything that helps; however anonymity protected.
5 This was a big part of the G8 Dementia but was cloaked in terms not clear.
6 It is necessary for all diseases.
7 Very supportive.
8
9
10 Not sure.
11 Good idea provided it is stored responsibly – I have my doubts about that though.
12 In view of recent scandals etc – only possible if appropriate safeguards (?is it possible)

 

 

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The legacy of "One hundred years of solitude": a truly innovative exploration of a type of dementia

book cover

Nobel prize-winning Colombian author Gabriel Garcia Marquez has died in Mexico aged 87.

Garcia Marquez was considered one of the greatest Spanish-language authors, best known for his masterpiece of magical realism, “One Hundred Years of Solitude”.

The 1967 novel sold more than 30 million copies and he was awarded the Nobel Prize for Literature in 1982.

And yet many don’t appreciate the relevance of this work to dementia.

In his renowned novel, García Márquez depicts the plight of Macondo, a town struck by the dreaded insomnia plague. The most devastating symptom of the plague is not the impossibility of sleep, but rather the loss of ‘the name and notion of things’.

The description in One Hundred Years of Solitude is very similar to that of the cognitive difficulties experienced by patients with semantic dementia (SD).

In an effort to combat this insidious loss of knowledge, the protagonist, José Arcadio Buendía, ‘marked everything with its name: table, chair, clock, door, wall, bed, pan’. ‘Studying the infinite possibilities of a loss of memory, he realized that the day might come when things would be recognized by their inscriptions but that no one would remember their use’.

Semantic dementia, a clinical syndrome characterized by a progressive breakdown of conceptual knowledge (semantic memory) in the context of relatively preserved day-to-day (episodic) memory.

Remarkably, García Márquez created a striking literary depiction of collective semantic dementia before the syndrome was recognized in neurology.

Garcia Marquez had been ill and had made few public appearances recently.

He achieved fame for pioneering magical realism, a unique blending of the marvellous and the mundane in a way that made the extraordinary seem routine.

With his books, he brought Latin America’s charm and teaming contradictions to life in the minds of millions of people.

Although frontotemporal dementia and semantic dementia  are associated with different overall patterns of brain atrophy, regions of gray matter tissue loss in the orbital frontal, insular, and anterior cingulate regions are present in both groups. 

The clinical syndrome now widely referred to as semantic dementia was fi rst described at the beginning of the 20th century by Arnold Pick, a remarkable neuropsychiatrist, neuropathologist, and linguist working in Prague, and by several other early behavioural neurologists.

Oddly enough, given the striking nature of the syndrome, this early work was followed by a long period of neglect; but about three-quarters of a century later, two initially separate streams of investigation converged to reawaken interest.

In 1975,  Elizabeth Warrington, now Professor Emeritus at Queen Square and lifelong doyenne of neuropsychology working with other greats such as Prof Ros Mccarthy, described three patients with a combination of visual associative agnosia, anomia, and disrupted comprehension of word meaning.

Shortly before this report, Tulving had proposed a distinction between episodic (facts) and semantic (concepts) a  memory, with the former referring to personally experienced memories specifi c to time and place, and the latter to culturally shared knowledge of word and object meaning.

Drawing on this distinction, Warrington concluded that her three patients had a selective loss of semantic memory rather than several separate cognitive deficits.

Dementia is a condition causing a steady decline in functions of the brain, accompanied by changes which can either be seen on a microscopic or macroscopic level, due to some underlying process.

The most common type of dementia worldwide is Alzheimer’s disease, typified in its early stages by a decline in short term learning and memory.

Here are Dr Peter Gordon, Kate Swaffer and Norman McNamara talking about my book.

For more information about my book, please refer to this page.

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Conducting an emotional debate about a diagnosis of dementia in primary care will fail

It’s now clear that much dementia policy in England quite simply has appeared from nowhere.

It has the veil of consultation, but we all know there has been little dialogue about the case-finding approach for people with dementia. There has been virtually no academic scrutiny of the dementia prevalence calculator.

I do not believe that the solution of a workable policy will be won through the pages of the British Medical Journal, especially when it is alleged that certain authors either have little clinical experience in dementia (and graduated in a humanities subject) or others are not disclosing their potential conflicts of interest. In as much a debate is waged in the academic journals, it nearly always becomes a ping-pong of article, reply and counter-reply. It possibly serves no real function other than to massage the egos of the people involved in the debate.

Public dissatisfaction with services is for a number of reasons. There’s a perception that complaints aren’t acted upon. The 2009 national dementia strategy for England “Living well with dementia” is very clear about the need for the diagnosis of dementia to be in the right hands.

See page 37.

“The message from those responding to the consultation exercise was that these are reasonable concerns, and that the primary care role should be that of identifying those with worrisome symptoms that might mean that their patient has dementia, excluding any other explanatory disorder, and referring on to a specialist service for that individual to receive a definitive diagnosis, not only of dementia, but also of the sub-type of dementia. This would require that such services are available for the GP to refer to and, in the large majority of the country, this is not currently the case. The focus of old age psychiatric services is on the severe and complex end of the spectrum, leaving early diagnosis and intervention largely unaddressed. Equally, geriatric and neurology services are saturated at present with their current work with those referred to them with dementia and complex physical co-morbidity and younger and atypical presentations respectively. This strategy is not intended in any way to minimise or undermine the role of primary care in the diagnosis and management of people with dementia. It is instead an acknowledgement of complexities that have become apparent in the last 10 years, and is designed to support primary care by generating services that they can use in a clear explicit care pathway. The primary care role following diagnosis can therefore be informed by the clinically important information as to whether or not that person has dementia, and of what sub-type, and treatment modified to take account of that. “

We need to know how easy it is for GPs to refer concerns about dementia onto specialist medical services, however defined.

It’s very difficult to ascertain what harm takes place through an incorrect diagnosis of dementia – though this is undoubtedly a concern, it is unlikely this would command a headline in the Telegraph or an editorial in the Lancet. It is simply not the case carers feel supported by the greater awareness of dementia. The G8 Dementia Summit barely mentioned carers, as it was intended to address the concerns of Big Pharma in finding a new market for new dementia drugs primarily.

At the end of the day, it is a race to the bottom to be satisfied with any degree of dementia awareness. We need to think about what type of awareness we are achieving? Are people actually better off in their understanding of what the different types of dementia are? Are people clear that the anti-dementia drugs known as cholinesterase inhibitors have a limited time window for some modest therapeutic impact on symptoms, with having no consistent proved impact on slowing the progression of disease?

Another ploy used is to harness the confusion of what a ‘memory clinic’ might be, and what support is available. It is now known a lot can be done to promote living well with dementia, but the medical profession is perhaps not best placed to do this, relying on some medications which simply don’t work well. It might be better to use the term ‘specialist clinical dementia services’, because then at least we get round the heterogeneity of what a ‘memory clinic’ is. A memory clinic might be one psychogeriatrician, or it might be a full blown multi-disciplinary clinic, hosted by a neurologist, general medical physician, social care worker, clinical psychologist, or psychiatrist to name but a few.

There has to be some sort of ‘third way’ between a 10 minute ‘chat about memory problems’ and the full tertiary referral unit workup of 2 x history, 2 x examination, CT, MRI, cerebrospinal fluid/lumbar puncture, psychometry, EEG and (very rarely) a brain biopsy.

There should be an easily identifiable mechanism for GPs to refer to those people best placed to make a working diagnosis of dementia, otherwise talk of diagnosis and ongoing support is simply going to promote anxiety if no such support is available. Just because diagnosis of dementia might be at floor level is not a carte blanche to produce lots of incorrect diagnoses of dementia. To say it should be a good way to encourage education is to combine an Aunt Sally approach with motherhood and apple pie. And we have to be clear why a diagnosis of a subtype of dementia does matter at all, and not in any way luxurious. This should be a basic demand of the English dementia policy. Some people, misdiagnosed as having Alzheimer’s disease, in fact have diffuse Lewy body disease, and can behave particularly badly in response to antipsychotics.

The notion that this policy merits incentives should be aggressively questioned. Any implications that GPs are complacent end up sounding like a patronising slur on a professional arm of the medical profession, whoever makes them. There is no doubt that primary care in England is under strain. Producing lots of cack-handed diagnoses of dementia, with insufficient resources in specialised medical dementia clinics, is not the correct solution. Rather than adopting a ‘there is no alternative’ approach, opinion and clinical leaders have a long way to build up trust over a failing dementia policy in England.

But sadly I do expect this potentially flawed policy to continue.

But to amuse myself, I will put in a freedom of information request to find out how much NHS England has budgeted for specialist clinical dementia services, in response to the anticipated increase in ‘potential’ dementia diagnoses being made in primary care.

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Did the Prime Minister's Dementia Challenge park a 'National Care Service' for good?

I’m still unclear where and when the Prime Minister’s Dementia Challenge came about.

Airbrushed for challenge

The lack of a clear audit trail for the Prime Minister’s Dementia Challenge

I know that it was launched in March 2012.

“Dementia” is not mentioned in the Conservative Party Manifesto for the general election of 2010. It is however mentioned in the Coalition Agreement, with broadly the same wording as the Liberal Democrat manifesto 2010, but that still doesn’t explain how this became the “Prime Minister’s Challenge”.

In summary, the one line in the Coalition Agreement is drafted as follows:

“We will prioritise dementia research within the health research and development budget”

But still no specific mention of that “Challenge”.

The distortion effect of the Prime Minister’s Dementia Challenge

The Dementia Challenge prioritises the Alzheimer’s Society, and it is clear that other charities, such as Dementia UK (which is experiencing threats of its own to its superb ‘Admiral nurses’ scheme) trying to plough on regardless.

The £2.4 million “Dementia Friends” programme emerged from the Social Fund and the Department of Health. The scheme has been launched in England at first, and it is said that the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

Indeed, many supported the fundraising for Dementia UK only this morning in the London Marathon too.

Dementia UK London marathon

There is no official cross-party consensus on the “Prime Minister’s Dementia Challenge”, though individual Labour MPs support the activities of “Dementia Friends”.

The market dominance of the Alzheimer’s Society for ‘Dementia Friends’ compared to other charities does not seem to have been arrived at particularly democratically either. There is no conceivable reason why other big players, such as “Dementia UK” or the Joseph Rowntree Foundation, were excluded from this friendship initiative.

Ironically, Japan upon which befriending is modelled is not ashamed of its care service.

It is palpably unacceptable if people are ‘more aware of dementia’ without a concominant investment in specialist memory clinics, or care and support services.

Genuine concerns from stakeholders involved with dementia care

It is clear amongst my followers on Twitter that the nature of this “Challenge” is causing considerable unease.

Concidentally I was reminded of this this morning:

But there are now some very serious questions about this policy, particularly from the ‘zero sum gain’ effect it has had knock-on in other areas of dementia policy.

When @Ermintrude2 looked into this at the time, the response was a bit confused.

And indeed Ermintrude has penned some thoughts at the time on this high impact blog.

What has happened to social care in the name of ‘improvement’, I agree, is very alarming.

But we do know full-well about the ‘democratic deficit’.

False pledges and threats, and unfulfilled promises

The general public were unaware that a 493 Act of parliament called the ‘Health and Social Care Act’ would be sprung on them, with a £3 bn top-down reorganisation.

But this was Lansley’s “emergency conference” on Labour’s “secret death tax” in February 2010.

A number of views were expressed at the time, including the need for better care from the Alzheimer’s Society at the time under a different CEO.

The full thrust of ‘Dementia Friends’ is a total change of mood music from February 2010’s concerns of the Alzheimer’s Society reported here:

“Care and treatment for sufferers of dementia should be at the heart of the general election campaign, the Alzheimer’s Society charity has said.”

Where has the Society been in campaigning on swingeing cuts in social care?

Also, in February 2010, Gordon Brown’s speech at the King’s Fund was reported, where Brown made a significant pledge.

“Mr Brown also announced that the government’s planned reforms to community and primary care health services also included a commitment to provide dedicated “one-to-one”nursing for all cancer patients in their own homes, over the next five years.”

We do know that the NHS has been persevering with this programme with ‘efficiency savings’.

In October 2012, it was reported that nearly £3bn was indeed returned to the Treasury, and it is unclear how, if it at all, it was returned to front line care.

So it’s possible that Brown’s plan, the subject of a hate campaign at the time from the Tory press, might have worked in fact.

Dilnot

In 2010 Andrew Dilnot had been tasked by the then government to propose a solution to the crisis in social care.

The response was from February 2013, after the top-down reorganisation.

“Mr Dilnot suggested a cap on how much anyone would be required to pay for their care costs over the course of a lifetime, suggesting a ceiling of between £25,000 and £50,000 (in 2010/11 prices). Beyond this point, the state would take on responsibility for the majority of the bill.

The Government today announced that from 2017 it intends to establish a cap of £75,000 in 2017 prices which, according to Mr Dilnot’s calculations, equates to approximately £61,000 in the 2010/11 prices (the basis of his report). If we’re to make a claim about the extent to which the Government has ‘watered down’ Mr Dilnot’s proposal, it’s crucial that we account for this inflationary effect.”

Resurrection of the ‘National Care Service’ by Andy Burnham MP yesterday, Shadow Secretary of State for Health

This issue may have to be revisited at some stage. Andy Burnham MP yesterday in the Bermondsey Village Hall, without much press present, mooted the idea of how a social care service could be established on the founding principles of the NHS, and would be a significant departure from the piecemeal 15-minute slot carers.

Burnham stated that care provided by inexperienced staff on zero-hour contracts was a problem.

An experienced member of the audience highlighted the phenomenal work done by unpaid family caregivers particularly for dementia.

The topic of a compulsory state insurance is interesting.

Social health insurance systems share a number of similar features:

  • Insured persons pay a regular contribution to a health insurance fund based usually on income rather than reflecting their risk of illness.
  • Clinical need and not ability to pay determine access to treatments and health care.
  • Contributions to the social insurance fund are kept separate from other government mandated taxes and charges.

In his classic article, Kenneth Arrow (1963) argues that, where markets fail, other institutions may arise to mitigate the resulting problems: ‘the failure of the market to insure against uncertainties has created many social institutions in which the usual assumptions of the market are to some extent contradicted’ (p. 967).

Rationale for this method of funding

A great advantage of ‘social insurance’ is, because membership is generally compulsory, it is possible (though not essential) to break the link between premium and individual risk.

There might be other important aspects. For example, both employers and employees pay contributions. Also, there might be Government support for those who are unable to pay goes through the insurance fund.

I have written before on the increasingly sophisticated methods of genetic diagnosis of dementias, and how this might impact on our health systems.

The philosopher John Rawls (1972) argues that in a just society the rules are made by people who do not know where they will end up in that society, that is, behind what he called the “Veil of Ignorance”.

Insurance can be interpreted as an example of solidarity behind the Veil of Ignorance: a person who joins a risk pool does not know in advance whether or not he will suffer a loss and hence have to make a claim. Insurance thus has moral appeal.

Ultimately there is a problem as to what type of care might be covered.

Does the policy cover only residential care, or also domiciliary care; is a person entitled to residential care on the basis of general infirmity or only if he or she has clearly-defined, specific ailments?

In the Dilnot recommendations, the cap on care payments did not include the “hotel costs” that a care home will charge. In other words, people in residential care will still need to pay (at the Dilnot report’s estimate) between £7,000 and £10,000 per year to fund their accommodation and living expenses. 

Furthermore, how will the answers to these questions change with advances over the years with changes in the actual prevalence of dementia, or in the implementation of ever increasingly sophisticated medical technology?

It has been proposed (Lloyd 2008) that long-term care could be financed via social insurance, with the premium paid as a lump sum either at age 65 or out of a person’s estate. The idea behind this proposal is twofol.

Firstly, as a person gets older, the range of uncertainty about the probability of needing long-term care  becomes smaller.

Secondly, if a person can buy insurance for a single premium payable out of his or her estate, the cost of long-term care does not impinge on his or her living standard during working life or in retirement, but can frequently be taken from housing wealth.

Development of social health insurance systems have normally been in response to concerns that inadequate resources were mobilised to support access to health services.

The continuing swingeing cuts in social care

And these cuts have continued: this report is from March 12 2014,

An analysis by Mind found that the number of adults with mental health needs who received social care support has fallen by at least 30,000 since 2005, a drop of 21%. Cuts to local authority social care budgets – the majority of which have hit since 2009 – have left a funding shortfall for care of up to £260 million, the charity said.”

Since there is no simple answer to the question of how much is the appropriate level of support, the issue of adequacy is best thought of as being a level that is considered appropriate in the country given its total resources, preferences and other development priorities.

And where are people from charities campaigning on this issue?

This issue of course was not considered at all in the G8 Dementia Summit, which focused on more monies for personalised medicine, genetic and molecular biology research, in response to concerns from an “ailing industry”.

Conclusion

I am actually truly disgusted at this unholy mess.

 

 

 

References

Arrow, Kenneth F. (1963), ‘Uncertainty and the Welfare Economics of Medical Care’, American Economic Review, 53: 941–73; repr. in Cooper and Culyer (1973: 13–48), Diamond and Rothschild (1978: 348–75), and Barr (2001b: Vol. I, 275-307).

Lloyd, James (2008), Funding Long-term Care – The Building Blocks of Reform, London:

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