Month: February 2014

Three films about dementia tonight at the Freud Museum left my Self Divided

Shibley Rahman 4 Comments

Everyone’s personal experience of care of dementia is different.

My description of living well with dementia borders on the super-sanitised, but at the time I wanted to neutralise some of the more fear-based campaigning using metaphors such as ‘battle’ and ‘flood’.

Here are three people pretending to enjoy my book.

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Sorry if you’ve just overdosed on “cheese”.

I was brought back down to earth with a thud at the Freud Museum in Hampstead this evening., in “Making Sense of Dementia”, film screenings and concurrent discussion.

The first film, “Ex Memoria”, by Josh Appignanesi, starred Sara Kestelman and Natalie Press. It was based on actual, real life experiences.

Developed with the Bradford Dementia Group, and funded by The Wellcome Trust, ‘Ex Memoria’ has already been distributed to hundreds of careworkers, residential home managers, charities and specialists in the field.

I find it useful as a talking-point of how the care system at worst can refuse to interact with a person with dementia, writing off everything as delusional, even if there is a coherent framework for a belief pattern deep down.

Based on real events, “Ex memoria” takes us into a day in the life of Eva, putting us face to face with one person’s experience of old age and dementia as she moves in and out of the momentary, the half-remembered and the partly imagined.

The spectacle of care staff in communicating in a less-than-meaningful way with persons with dementia in the care home in this film is intensely agonising.

The film was brilliant in demonstrating a culture of exclusion of people being ‘looked after’.

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I found the second film “The Waiting Room” intensely depressing, but superbly presented, produced and directed by Jane Harris and Jimmy Edmonds.

First screened at the 8th Annual Conference on Dementia and End of Life (London, December 2013), Jane Harris’ film “The Waiting Room” is about the last four years of her father’s life, spent on a psychiatric ward in his home town of Ayr.

In fact the short film had me in tears.

It describes the filmmaker’s father as effectively left to live in an emotional colourless cubicle.

Her father was left to play at dismantling the bed and counting his clothes, as he was so bored.

For somebody who had won a John Logie Baird prize once upon a time, the audience felt the pain of his degrading treatment, a specific scenario of institutionalised care.

And yet the care staff ensured he was groomed, shaved and washed. But it seemed totally to disempower him of any expression of him as a person.

It illustrates the frustrating experiences of people living with dementia, and the continual confrontation with a system of treatment that can appear, at worst, to fail utterly to make sense of the person’s individual life or experience.

Jane remarked was the care staff ‘treated him like any other patient’.

Somebody further remarked that it was if he was being treated as dead, even before he had died.

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Finally, the short film “Keeping mum” by James Murray-White is a fascinating insight into the life changes experienced by his mother.

It does produce glimpses into activities which are indeed promoted in the current national policy on supporting wellbeing in dementia.

These activities might include pottery (James’ mum was a keen potter in her youth), and enjoying opening spaces and gardens.

The film shows too glimpses into his mother’s sense of humour, which was much appreciated by the audience.

To call this short film superb would be an understatement, I feel.

Dr Mitul Mehta from the Institute of Psychiatry asks for greater scrutiny for what the Cambridge Cognition test for Alzheimer’s Disease actually examines

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Dr Mitul Mehta heads up the neuropharmacology group at the Institute of Psychiatry.

Here, he describes the Cambridge Cognition “paired associates learning test”, where you have to remember which boxes contain particular objects on a screen.

Both Dr Mehta and I both worked in the research laboratory in Cambridge which did research into this test at the end of the 1990s.

It might be sensitive to the memory deficits in people with early Alzheimer’s disease, and indeed was cited by David Cameron in his G8 dementia summit speech.

But what specifically is impaired is difficult to work out, because the test measures more than one thing.

There is an attentional component. We know through a number of routes, in whatever way you decide to investigate variants of this task, the brain regions activated tend to encompass those at the front and back of the back/side (the “frontoparietal network”).

It also loads heavily on working memory.

But these are not areas thought by most to be involved early in Alzheimer’s disease.

But it also loads heavily on episodic memory and learning. If we could show better that it’s this learning component that’s affected, this would make interpretation of the test far easier.

That this test also picks up memory problems in ‘mild cognitive impairment’, which is not Alzheimer’s disease, is a problem. The question
is how many of these people who have mild cognitive impairment, who don’t have Alzheimer’s disease, get told that they may have Alzheimer’s disease, and go onto receive further investigations which might include a specialist brain scan.

There is, there, a legitimate question to be asked about which parts of the brain are activated there.

There has never been robust evidence, because of the way in which this task has been investigated using a brain scanner, that it is specifically the learning components that activate certain parts of the brain, known as the parahhippocampal gyrus and entorhinal cortex.

It is these parts of the brain which ‘gate information’ into the hippoocampus proper, in the temporal lobe. That’s the part of the brain by your ear.

bilateral hippocampus

If the task could be properly neuroimaged to tease out this learning component, we’d be much further forward. For what it’s worth, I think the task will activate the parahippocampus gyrus and perirhinal cortex, but it really is a question of showing this properly. This I feel has yet to be done.

How the acute medical take can generate into chaos for persons with dementia

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The independent Future Hospital Commission was established by the Royal College of Physicians in March 2012 to find solutions to the current challenges facing the NHS – a rising number of acute admissions, the increasing number of patients who are frail, old, or who have dementia, patients with increasingly complex illnesses, systemic failures of care, poor patient experience, and a medical workforce crisis.  The NHS leaflet on the 6Cs here. Even for the official 6Cs, powerful forces are at play in undermining the acute medical take. The ‘Good 6Cs’ can find themselves competing with the ‘Bad 6Cs’, which can determine the outcome of the acute general medical take. One year on after the publication of the last Francis Report on Mid Staffs, there appears to be common themes in what can go wrong.

12Cs revised

1. Care

Care is described as a “core business”, perceiving each event with a patient as a transaction which is a potentially billable event.” Caring defines us and our work” indeed is true; as it defines to some extent how people get paid. Unfortunately, the way in which care goes wrong is pretty consistent in the narrative. For example, nurses may be too ‘posh’ to care. In this version, nurses who are too academic are incapable of caring for which there is little published evidence. The other more likely version is that junior nurses are “too rushed to care”. This is understandable, in that if there are ten people still waiting to be clerked in, it can be hard for all professionals to focus on taking a proper history and examination without cutting corners, for examination in completing an accurate neurological examination of the cranial nerves. However, the emergency room often cultivates a feeling of a conveyor belt, with a feeling of “Now serving number 5″. A patient experience is not going to be great if the doctor, nurse or AHP appears rushed in clerking in a patient. The patient feels more like they are in a sheep dip as “continuity of care” between different medical teams suffers.

2. Compassion

“Compassion is how care is given through relationships based on empathy, respect and dignity.”  Again there is some irony in the same management consultants outfit recommending compassion by healthcare professionals, when the same professionals have recommended ‘efficiency savings’. Compassion in the NHS can of course be extremely difficult to deliver from the nurses remaining after there have been staff cuts, and the remaining nurses are having to work twice as fast ‘to beat the clock’, or a target such a “four hour target”.

3. Competence

“Competence means all those in caring roles must have the ability to understand an individual’s health and social needs.” This is of course is motherhood and apple pie stuff. The problem comes if the NHS ‘productivity’ is improved with lateral swapping of job rôles: that some functions are downgraded to other staff. Health care assistants might find themselves doing certain tasks which had been reserved for them. If there’s mission creep, the situation results of receptionists triaging a patient, rather a physician’s assistant doing a venflon. Competence of course cannot be delivered by untrained staff delivering an algorithm, as has been alleged for services such as NHS 111.

4. Communication

Communication is central to successful caring relationships and to effective team working. The overall “no decision about me without me” mantra of course has been made a mockery of, with unilateral variation of nursing and medical contracts (with adjustments to terms and conditions, and pay, of staff by NHS managers without any dialogue.) If you don’t communicate any errors in clinical care to the patient (reflected in the ‘lack of candour’ below), the patient and relatives are bound to leave with an unduly glossy version of events of the acute medical assessment. This can of course bias the outcome in the ‘Friends and Family Test’.

5. Courage

“Courage enables us to do the right thing for the people we care for, to speak up when we have concerns.” Take the situation where your Master (senior nurse) is wishing to implement a target, but you’re the one rushed off your feet with missing drug charts, no investigations ordered, no management plan formed as the patient was shunted out of A&E before the 4 hour bell started ringing? Are you therefore going to be able to speak out safely against your Master when your Master is the one who determines your promotion? If you’re made of strong stuff, and completely fastidious about patient safety, you might decide ‘enough is enough’ by whistleblowing. But the evidence is that whistleblowers still ultimately get ‘punished’ in some form or others.

6. Commitment

“A commitment to our patients and populations should be the cornerstone of what we doctors, nurses, and allied healthcare professions do, especially in the “experience of the patients.””.  Of course, if you get a situation where junior staff are so demoralised, by media witch hunting, it could be that people are indeed driven out of the NHS for working for other providers, or even other countries. A commitment to the public sector ethos may have little truck if you’ve got more interest in ‘interoperability’, or ‘switching’, which are of course the buzzwords of introducing ‘competition’ into healthcare systems.

There can be some downright ‘yang Cs’ epitomising danger for the acute medical take and hospital.

7. Chaos

If for the sake of hitting a target, drug charts aren’t written up, investigations not ordered, an inaccurate management plan produced, that is no victory at all. This can only lead to chaos later down the line for nursing teams for ‘receiving wards’.

8. Crisis

When things get out of hand, some of the more hyperbolic allegations might conceivably happen. With people lose the plot, they are capable of anything. And if the system is too lean, and there’s a road traffic accident or other emergency, or there’s an outbreak of rotavirus amongst staff, there may be insufficient slack in the system to cope.

9. Cuts

Whilst patient campaigners have been right to emphasise that it’s more of a case of safe staffing rather than a magical minimum number, there’s clearly a number of trained staff on any shift below which it’s clearly unsafe for the nurses to deliver good nursing care. Cuts in real terms, even if that’s the same budget (just) for an increased numbers in an elderly population, can of course be a great motivator for producing unstable staffing, as the Keogh 14 demonstrated. That might be especially tempting if ‘financially strained’ NHS FTs are trying to balance their budgets in light of PFI loan repayments.

10. Collusion

This can affect a nurse’s ability to communicate problems with courage, if senior nurses are colluding with certain consultants in meeting targets. This means that medical consultants who are recipients of the non-existent drug charts, non-existent management plans, or non-existent investigation orders can probably take one or two weeks to ‘catch up’, but the ‘length of stay’ gets extended. Frontline staff can take the risks. But senior nurses can collude with the management to deliver ‘efficiency savings’ and promote themselves. That’s not fair is it?

11. Lack of Candour  

This target-driven culture of the NHS, and excessive marketing of how wonderful things are, must stop.  A lack of honest communication with the patient through candour can lead to patients never knowing when things go wrong. This is a cultural issue, and it may be legislated upon at some point in the future. But without this cultural willingness by clinical staff to tell patients when things have unnecessarily got delayed through the missing drug charts etc., they will only get to know of things going badly wrong.

12. Complaints  

If things go badly wrong, they may generate complaints. These complaints may as such not matter if the system completely ignores complaints. For example, there has been only one successful judicial review against the PHSO since 1967. The recent review of the complaints process  for NHS England has revealed how faulty the process is. There has been criticism of the clinical regulators in their ability to enforce patient safety too, particularly in light of Mid Staffs.

As you can see, the system is delicately balanced. If transparency is the best disinfectant, it’s time to reveal the other six Cs for a start? The most important thing of course may be Culture, the 13th C.

Being number 13, it may be worse than unlucky for some.

Is prevention of dementia merely a pipe dream?

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Predicting the future on the basis of your past is of course the ultimate goal of the shopping industry.

It also seems to be the goal of healthcare, as consumer behaviour and patient care appear to converge in ever-marketised healthcare.

When you ‘sign up’ for a health subscription somewhere, one day, it’s possible you’ll be offered “packages” most suitable for you. Consider them like targetted adverts on Facebook. Of course, with disease registries compiled on your behalf by public health through data sharing, tomorrow’s world is getting ever closer.

So how much of dementia is in your ‘control’, if you haven’t yet developed it?

Is prevention of dementia a pipe dream?  There are, after all, many factors which we’re born with which can have a huge influence. These are known as generic factors.

Amazon, the world’s largest online retailer, is already testing unmanned drones to deliver goods to customers. The drones, called Octocopters, could deliver packages weighing up to 2.3kg to customers within 30 minutes of them placing the order. Amazon has filed a patent that will allow it to ship a package to you before you even know you’ve bought it.

To give you another example, I know someone who was being given sponsored ads for hotels in Bilboa after Facebook had picked up her location by GPS.

Now back to the past.

Back to Black in fact.

The Black report was a 1980 document published by the Department of Health and Social Security (now the Department of Health) in the United Kingdom, which was the report of the expert committee into health inequality chaired by Sir Douglas Black. It was demonstrated that although overall health had improved since the introduction of the welfare state, there were widespread health inequalities.

Full Text of the Black Report, supplied by the Socialist Health Association website.

Surprisingly enough, it’s not all doom and gloom.

Modulating the environment might have some sort of impact on prevention of dementia, even if we don’t yet know how big or small this impact is.

The study of exceptionally long-living individuals can inform us about the determinants of successful aging. There have been few population-based studies of centenarians and near-centenarians internationally. But a recent study involving individuals 95 years and older were recruited from seven electoral districts in Sydney provided evidence that dementia is not “inevitable” at this age and independent living is common.

Low socioeconomic status in early life is well known to affect growth and development, including that of the brain; and it has also been shown to affect the risks of other chronic diseases.

Over a decade ago, a real attempt was made to relate early socioeconomic status to later dementia. We found results consistent with the hypothesis that a healthier socioeconomic environment in childhood and adolescence leads to more “brain reserve” (the brain’s ability to cope with increasing age- and disease-related changes while still functioning) and less risk of late-life dementia, including Alzheimer’s disease, later on.

Results from two major cohort studies, led by the University of Cambridge and supported by the Medical Research Council, have reveal that the number of people with dementia in the UK is substantially lower than expected because overall prevalence in the 65 and over age group has dropped.

Three geographical areas in Newcastle, Nottingham and Cambridgeshire from the initial MRC Cognitive Function and Ageing Study (CFAS) examined levels of dementia in the population. The latest figures from the follow up study, CFAS II, show that there is variation in the proportion of people with dementia across differing areas of deprivation,  suggesting that health inequalities during life may influence a person’s likelihood of developing dementia.

The prevalence of dementia in the general population might be subject to change.

Factors that might increase prevalence include: rising prevalence of risk factors, such as physical inactivity, obesity, and diabetes; increasing numbers of individuals living beyond 80 years with a shift in distribution of age at death; persistent inequalities in health across the lifecourse; and increased survival after stroke and with heart disease.

By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality, and increased early life education, which is associated with reduced risk of dementia.

The study was led by Professor Carol Brayne from the Cambridge Institute of Public Health at Cambridge University. She opined that whether or not these gains for the current older population will be borne out in later generations might depend on whether further improvements in primary prevention and effective health care for conditions which increase dementia risk can be achieved, including addressing inequalities.

In fact, it has been recently appreciated that cardio-metabolic risk factors have been associated with poor physical and mental health.

An association of low education with an increased risk of dementia including Alzheimer’s Disease, the most common cause of dementia globally, has been reported in numerous cross-sectional and longitudinal studies. Education and socioeconomic status are highly correlated, it turns out.

The reserve hypothesis has been proposed to interpret this association such that education could enhance neural and cognitive reserve that may provide compensatory mechanisms to cope with degenerative pathological changes in the brain, and therefore delay onset of the dementia syndrome.

The complexity of people’s occupations also positively influences cognitive vitality, and this relationship becomes increasingly marked with age.

Further evidence from studies suggests that a poor social network or social disengagement is associated with cognitive decline and dementia.

The risk for dementia including Alzheimer’s Disease was also increased in older people with increasing social isolation and less frequent and unsatisfactory contacts with relatives and friends. Rich social networks and high social engagement imply better social support, leading to better access to resources and material goods.

Previous studies have also shown that social determinants not directly involved in the disease process may be implicated in the timing of dementia diagnosis. Possibly the living situation is related to the severity of dementia at diagnosis. If so, primary care providers should have a low threshold for case-finding in older adults who live with family or friends?

Regular physical exercise was reported to be associated with a delay in onset of dementia including Alzheimer’s Disease among cognitively healthy elderly.

In the Kungsholmen Project, the component of physical activity presenting in various leisure activities, rather than sports and any specific physical exercise, was related to a decreased dementia risk. It is generally thought that physical activity is important not only in promoting general and vascular health, but also in promoting some form of brain rewiring.

Various types of mentally demanding activities have been examined in relation to dementia in general, including knitting, gardening, dancing, playing board games and musical instruments, reading, social and cultural activities, and watching specific television programs, which often showed a protective effect.

So it really might not all the doom and gloom, and certainly we are much further forward than we were 33 years ago with the publication of “The Black Report”.

For the record, this Report doesn’t even mention dementia.

Prof Alistair Burns in New Scientist writing “Dementia: A silver lining but no room for complacency” summarised elegantly the situation as follows, on 10 January 2014:

“While it is true that there is no cure, the findings suggest that prevention is at least possible. This must surely explain any reduction in prevalence, so what might be behind it? Improved cardiovascular health, better diet and higher educational achievement are all plausible explanations. This opens up the possibility that people who are able to take control of their lives can reduce their individual risk of dementia.”

So, to answer the actual question.

There is a realistic possibility that we might be able to identify certain people who are most at risk of developing a dementia, and modifying the known risk factors constitutes ‘low hanging fruit’ for policy. If you park aside the corporate capture potential of making new markets through development of health promotion packages, this is indeed an example, shock horror, of where data sharing across the whole population might be helpful and direct the health of the nation in future.

Sure, it’s about dementia research stupid, but don’t forget about wellbeing.

Shibley Rahman 1 Comment

The famous aphorism of Carville is: “It’s the economy stupid, but don’t forget about healthcare.”

This is the way I feel about certain dementia campaigners who unashamedly wish to sideline wellbeing, in the search for a ‘cure’ via well funded biology labs.

Australia will host the next meeting of the Group of Twenty (G20) in November. We ask our Prime Minister, Mr Tony Abbott, to place dementia prominently on the G20 agenda. A petition entitled, “Australian PM Tony Abbott: Make dementia research and prevention a priority agenda item at the G20″ has been created by Professor Perminder Sachdev (Co-Director), from the Centre for Healthy Ageing.

The campaign banner is here.

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Firstly, let me say it would be impossible to write this article without acknowledging Kate Swaffer.

Kate is here on Twitter, @KateSwaffer.

Kate is Chair of the Dementia Advisory Committee at Alzheimer’s Australia.

I firmly believe that there is a clear priority for researching good quality dementia care, and wellbeing approaches, as well as funding research into basic biology and applied treatments; and possible preventions, acknowledging that vascular dementias are probably are our best bet for initially reducing the prevalence.

These are potentially exciting times.  See for example the recent work on GSK-3 inhibitors which has much promise, if they can tackle ‘known issues’ including potential side effects.

There’s a whole plethora of issues why dementia modifying-drugs have been found to be turkeys not to fly ultimately. These don’t just include a modest effect on benefits and outcomes, but also an inability of the drug to cross the barrier between the body and the rest of the body, and their prohibitive initial price of retail. Notwithstanding, dementia biological research is exceptionally vital to support, and the petition above must be supported for those reasons alone possibly.

But it really is about the quality of life ‘stupid’.

For example, the Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

There is much to be gained by investing in understanding wellbeing and wellbeing improvements for people living with dementia, allowing greater independence where possible and appropriate. This involves a dialogue about the value that people with dementia bring to the community, along with us all, adaptations and innovations to improve vastly quality of life, design features in a person’s home, ward or external environment, greater choice about care services and better provision of information, promotion of leisure activities and techniques already proven to be of benefit (such as life story or reminiscence approaches).

For research to be moral, we should consider whether it’s moral that Pharma should have the lion’s share. The last decade is littered with failures, with the people should shout loudest, not necessarily anyone with formal academic qualifications in medicine, nursing, social care, or specifically dementia, not acknowledging that the cholinesterase inhibitors do not slow progression in the majority of individuals with Alzheimer’s disease. The modest effects of these drugs on many comes close to being an offensive scam, though the drugs are clearly of benefit in some.

“At the recent G8 summit, the leading economies of the world made a commitment to developing a cure for dementia by 2025. The UK said it would double its annual research funding for dementia to £132m by 2025. The USA has increased its funding for dementia recently by 12.5%. However, all this comes from a low base, with research funding for cancer currently being about 8 times, and for cardiovascular disease about 6 times that for dementia in high income countries (HICs). A huge imbalance will continue to exist.”

Otherwise, we get stuck in the same old tired language of the pharmaceutical industry.

Please do sign the petition, but please do not tolerate these messaging devices which are designed to induce panic and fear. People with dementia do not deserve that.

“[Abbott] will follow the lead of the British Prime Minister who recently hosted the G8 Dementia Summit, and called dementia “the disease that steals lives, wrecks families and beaks hearts” and recognised it as “an increasing threat to global health”.”

This language of “burden” not value has been pervasive in many charities’ attempts at raising money for dementia historically:

“Of course, dementia is a global problem, currently costing more than $600 billion annually, and growing exponentially. The greatest growth is in low and middle income countries (LMICs). Already, there are more dementia patients in LMICs, and by the middle of the century, more than 70% of dementia patients will be in these countries, which are ill-equipped to deal with the burden of dementia.”

Without unpaid carers in the UK, the NHS care for dementia would collapse. And yet they are totally invisible in this narrative.

Certainly, globally low rates of dementia are unacceptable, but also unacceptable is the medical profession not talking about wellbeing at all with their patients preferring to stick to the rubric of “treatment”

If, like me, you’d like to give carers a voice, please support the work of Tommy Whitelaw (@TommyNTour).

“In many countries, there is a lack of awareness of the problem, dementia is poorly diagnosed and facilities for treatment and care are rudimentary. ADI estimated that 3 out of every 4 of the 36 million people worldwide living with dementia have not been formally diagnosed and are not receiving treatment and care. The “treatment gap” is most significant in developing nations. In Australia, the average delay between the onset of noticeable symptoms and a firm diagnosis is 3.1 years. Putting dementia on the G20 agenda and getting a commitment from the leaders of countries like China, India and Brazil is likely to have a remarkable impact on dementia awareness, care and research around the world.”

And the bottom line is..

“More funds are needed for the diagnosis, treatment and care of dementia patients. An investment into dementia research is urgently needed from all countries, led by but not restricted to the rich nations. In many parts of the world, research into dementia is non-existent. This, combined with the relative neglect of dementia research in rich countries, has created a major gap between the disability and suffering attributable to dementia and the research investment into its diagnosis, treatment and appropriate care. Greater research funding will help develop new treatments, but more importantly, exploit the current knowledge to develop strategies to prevent dementia or delay its onset. The G8 has set ambitious targets. We ask Mr Abbott to take the lead and make it a truly global fight against the dementia time bomb.”

Arrrgghh.

It is now more essential than ever to ask persons or ‘users’ of the NHS, and those of jurisdictions beyond such as in Australia, what they want from a strategic response to dementia. This could include, justifiably,  better support for carers who include unpaid family caregivers working under considerable stress.

More than ever we need to have research funds to be allocated correctly. It’s going to be vital to have persons with dementia on these research funding allocation boards. For example, shouldn’t we know about the cost/benefit analysis of GPS trackers for people with dementia at risk of wandering?

With all the much trumpeted talk of ‘doctors being in the driving seat’, it cannot be acceptable that persons with dementia, if they are there at all, are tokenistically placed on funding boards.

Persons with dementia and carers should be empowered to tell the people with the money what matters to them the most. This could of course be the noble search for a cure, and much more parity for dementia research as compared with other conditions.

Sure it’s about dementia research stupid, but don’t forget about wellbeing.

I bought today my own book “Living well with dementia” at a bargain price from Primrose Hill Books

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I got a bargain today.

I have been quite a good mood recently, getting ready for my book launch in Camden on the afternoon of February 15th, 2014. We’re all going out for dinner in Pizza Xpress later that evening, somewhere in Central London.

shibley rahman living well with dementia

I bought my own book ‘Living well with dementia’ from Primrose Hill Books for the very much discounted price of £16.99.

This is not because it was a soiled copy, or because I was the buyer.

It was because they had ordered it in especially from the wholesalers, and managed to sell it onto me a very much reduced price.

Receipt 2

Of course I am very grateful, as I think it’s important to support local independent booksellers in the community.

Here’s a good piece from last year on ‘five reasons to support your local indie bookseller‘.

Here are the full details of ‘Primrose Hill Books’. They’re on the main road which passes through Primrose Hill. This book is called Regents Park Road.

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Nonetheless, I appreciate that some people will prefer to use the bigger well known book retailers, especially if they do not time to browse or travel to such bookstores.

After a bit of haggling, we got Amazon this afternoon to reduce their delivery time from 9-11 days to fewer than 24 hours. This is of course a huge result for me. Their page on my book is here.

Book cover

The Blackwells Bookstore is normally a good place to find the book for immediate delivery, but not at the time of writing this blogpost. The book is currently out of stock, but I do know reliably they had a good stock once upon a time. Here is their page.

But Primrose Hill Books will always have a special place in my heart. I’ve bought books there I’d never have ordered on Amazon, for example, through browsing.

It’s run by Jessica and Marek (and Kelly is often there too). All three have an enclopaedic knowledge of current books, some well known, some not so well known.

Of course, it was a source of great pride to see my book there. I’ve published specialist textbooks, but not the type which would look in place in the bookshop above or any other high street bookseller.

Here’s Jess looking at the book.

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She said it was a good book, and we had a discussion of how long it had taken me to write (a year),  how this had become a real passion of mine to share this information and to dispel all the scientific misinformation about dementia, and how it was written in the style of a long blogpost but it actually contained a lot of interesting contemporaneous evidence and discussion.

It is of course a bit weird to see the book alongside classics such as Ben Goldacre’s “Bad Pharma: How medicine is broken, and how we can fix it” and Naomi Wolf’s “Vagina”. But hey ho.

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You can buy the book from the publishers’ website too.

Their is their official flier. You get 20% off if you use the promotional code ‘AUTHOR20′. You enter this code apparently just when you are completing the ‘checkout’ in this e-bookstore.

And finally, one of the people I genuinely admire the most is Tommy Whitelaw (please support Tommy at “@tommyNTour“).

You can read about Tommy’s campaign for giving carers ‘a voice’ on my blog here. His story continues to motivate me very much – and not just because he’s a Glaswegian like me!

Tommy is very honoured that his campaign and letters in Sally Magnusson’s Book “Where Memories go”.

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Hopefully the episode where Sally talks to Tommy in “Medical matters: caring for carers” will be made available on the BBC iplayer shortly.

And finally – here’s Sally’s book on the Hodder website.

All in it together, and all that.

My research survey on perceptions and image of dementia following the G8 dementia summit

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This study can only take place subject to ethical approval from a local COREC. Whilst there is no wish to collect data apart from anonymously, and whilst we will ensure governance of the study for data collection, information given to participants, and whilst we will seek permission to take part (and consent), it’s imperative that a senior investigator on the team (not me) is accountable for the findings. This will be essential if we are later to publish any findings publicly in abstract form or beyond.

I am intrigued about personal reactions to the #G8dementia summit, regarding some perceptions and the image of dementia, and whether the summit addressed any of that.

I’m also interested in seeing whether the summit had a differential effect on those persons living with dementia, and those without (including carers).

There are 28 questions.

Some invite open-ended answers.

There’ll therefore be three groups:

Group A    Persons living with dementia

Group B   Carers

Group C   Not groups A or B

I’ll make three links to these 3 surveys available in time.

I’d be interested in any changes to the questions, or any additions to this list of questions. I will be also collecting very basic demographic data in my surveys. Please use the comments section below this post.

THE SURVEY

This survey is about your perceptions and image of the G8 Dementia Summit which took place in December 2013.

This survey is completely anonymous.

I’d be very grateful if you could answer as best as you can.

The questions have no right/wrong answers.

The survey is in three sections: Part A, B and C.

Thanks!

PART A

Questions 1 – 19

1. Did you see any of the news coverage on the television about the #G8dementia Conference last year?

Yes

No

2. Did you hear any of the news coverage on the radio about the #G8dementia Conference last year?

Yes

No

3. Did you read any of the news coverage on the internet about the #G8dementia Conference last year? This could include any references to the event in the social media, such as Facebook or Twitter.

Yes

No

4. Were you aware of a potential significance of dementia in the future?

Yes

No

5. Do you consider the response against dementia to be a ‘fight’?

Yes

No

6. Do you consider the numbers of people to be living with dementia to be a ‘explosion’ in the near future?

Yes

No

7. Do you consider yourself to be ‘shocked’ by dementia?

Yes

No

8. a) Do you think it’s right to compare dementia to HIV/AIDS?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

9. a) Do you think it’s right to compare dementia to cancer?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

10. a) Do you consider the response against dementia to be a ‘war’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

11. a) Do you consider the response against dementia to be a ‘flood’, or something against which ‘the tide must be turned’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

12. Did the #G8dementia summit evoke in you a feeling of being ‘fearful’ about dementia?

Yes

No

13. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about social care for dementia?

Yes

No

14. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about the possibility of a breakthrough in a cure for dementia?

Yes

No

15. Did the #G8dementia leave you clearer about the relationship between Alzheimer’s disease and dementia?

Yes

No

16. a) The #G8dementia sought to improve research and a lot of this focussed on ‘personalised medicine’. Did you feel this was explained to you so that you understand it better following the G8?”

Yes

No

b) Please elaborate if you wish.

[open ended]

17. The research community is absolutely clear about the distinction between normal ageing and disease: agree or disagree?

Yes

No

18. Do you feel that #G8dementia addressed the notion that people do not always have the right knowledge and information to manage their condition?

Yes

No

19. Do you feel that #G8dementia promoted ‘living well with dementia’, for example through health innovations?

Yes

No

PART B

Question 20

20. How well do you think the #G8dementia Conference did in addressing the needs of the following groups of the following people?

[Answer from 0 (not at all) to 5 (completely)]

Researchers
Pharma Industry
Persons with dementia
Carers of persons with dementia
Journalists and the media
Politicians
Big charities
Small charities

PART C

Questions 21 – 28

21. What do you believe the #G8dementia summit set out to achieve? Did the organisers achieve in their aims?

[open ended]

22. Do you have any concerns about the way the #G8dementia summit was conducted?

[open ended]

23. What do you expect the #G8dementia summit, in fact, will achieve ultimately?

[open ended]

24. Do you think the #G8dementia helped decrease the stigma which has been associated with dementia?

[open ended]

25. Do you feel the public is generally united in their perceptions of dementia, or do you there exists a diverse range of different perceptions?

[open ended]

26. Do you think negative perceptions of perception exist by members of the public? Why or why not?

[open ended]

27. Are there any positive perceptions of perception by members of the public?

[open ended]

28. Finally, do you have any views about what the aim or purpose of the #G8dementia summit was? Do you know how it was instigated, and by whom?

[open ended]

Tommy Whitelaw, Alzheimer Scotland and “Dementia Carer Voices”: caring about the carers

Shibley Rahman 2 Comments

There is no doubt that Tommy Whitelaw is totally genuine in his driving ambition, of giving carers a voices. He doesn’t care about technocratic busybodies or career types who don’t actually care about dementia. Tommy is all about giving people who are probably the most vulnerable in society the support they deserve. Unsurprisingly, there is much love for what Tommy is doing.

According to the charity Alzheimer Scotland, some 82,000 Scots have dementia, 3500 of them under the age of 65.  The number is expected to rise to 164,000 by 2036. Tommy Whitelaw, who toured Scotland raising awareness of how dementia affects sufferers and their carers, by asking carers to write letters telling their stories that he presents to the Scottish Government.

Alzheimer Scotland provides a wide range of specialist services for people with dementia and their carers. They offer personalised support services, community activities, information and advice, at every stage of a person’s life with a dementia.

Dementia Carer Voices is a Scottish Government Project funded project to 2016 to engage with Health and Social Care professionals and students to promote a fuller understanding of the carer journey, provide a platform where carers can express their views and experiences of caring for a loved one with dementia and to harness the awareness raising activity undertaken by Tommy Whitelaw.

In the film below, Tommy – who before he began to care for his 72-year-old mother, Joan, toured the world several times, selling official merchandise for such groups as U2 and the Spice Girls – says that Celtic Park, Ibrox, Hampden and Fir Park would together not be enough to house all the sufferers, their carers and their families.

Tommy has had an “amazing journey” since doing his walk around Scotland and believes he can now speak up on behalf of other carers, and the struggles they face.

“I’ve been overwhelmed by the carers I have met – husbands caring for wives, wives caring for husbands, daughters and sons caring for parents – but behind their stories are difficulties similar to mine. But I’m broken-hearted by the sheer scale of the problem.

This project

  • Captures the experiences of carers across Scotland with a view to informing future policy and service provision
  • Raises awareness of the issues around caring for someone with dementia including among health and social care professionals, students and the wider public
  • Highlights the role of carers as natural resources; carers as people with needs; carers as people with independent lives
  • Empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia

Tommy recently writes:

“It breaks my heart opportunities missed along the way that would have helped mum and myself and helped us keep crisis at bay. We are on the most part private people at heart, we keep our private matters to ourselves and often crisis is reached. I reached a crisis point myself and can tell you it’s the most dreadful place to be.”

“We have to do all we can to keep improving care, keep promoting and signposting initiatives and support already out there in our communities locally and nationally.”

“For every person we let reach crisis as a society we fail them, for every one looking back like me opportunities missed are painful to look back on.”

Should dementia charities trademark their campaign logos?

Shibley Rahman 3 Comments

The idea of all charities being fluffy and nice is long gone.

One or two have eyewatering incomes which stick in your throat somewhat. They are fully corporate in behaviour, and have access to the same tools used by other corporates (including corporate lawyers).

On the other hand, some dementia activists have ploughed on regardless with comparatively much less income.

Norman McNamara posted in his Facebook group for people interested in dementia, recently, news of a communication which he’d received.

This was from Jeremy Hughes, CEO of the Alzheimer’s Society, about how the (Ostrich) Purple Angel could be shown side-by-side with the Alzheimer’s Society “Forget-me-not” symbol.

Jeremy Hughes’ email mentioned that other symbols chosen to support and promote dementia awareness, including the Purple Angel and the Butterfly Scheme, should sit alongside the forget-me-not contributing to overall efforts to create greater dementia awareness.

Norman felt this was great. It was on the day Norman (‘Norrms’) was due to present on behalf of the Torbay Dementia Action Alliance.

NORMAN

In it together?

To make up for this potentially irritating situation, however, Norman has massive goodwill from persons with dementia and their friends.

In answer to my question above, “Should dementia charities trademark their campaign logos?”, a friend of mine suggested on Facebook, “they’d be mad not to.”

The idea of dementia communities is not new.

Norman’s ‘purple angel’ is in the top left hand corner of this page. Clearly the “Purple Angel” looks nothing like the “Forget me not” visually.

The “Forget me not” emblem is seen here on the “Dementia friends” website.

And adding to the confusion is the issue that the ‘forget-me-not’ is apparently the emblem of members of the Freemasons community, so that they can recognise each other.

See for example this recent e-Bay item.

Masonic

There’s also a huge number of them, some of which will have been registered despite not being that distinctive.

All of this is incredibly important legally, when you analyse how the law works for infringement of a trademark works under the Trade Marks Act (1994). The relevant clauses are s.10(2)(a) and s.10(2)(b).

The concept of friendship in dementia can be deciphered from a number of different sources in fact.

For example, the concept is a natural extension of the “connected communities” idea of the RSA. This is a programme that explores ‘social network’ approaches to social and economic challenges and opportunities.

They concentrate on understanding and mobilising ‘real world’ face to face networks of support and exchange between citizens, small informal groups, public sector and third sector agencies, and private sector businesses.

Supportive communities are well known in Japan.  For example, Fureai kippu (in Japanese ふれあい切符 :Caring Relationship Tickets) is a Japanese currency created in 1995 by the Sawayaka Welfare Foundation so that people could earn credits helping seniors in their  community.

The basic unit of account is an hour of service to an elderly person. Sometimes seniors help each other and earn the credits, other times family members in other communities earn credits and transfer them to their parents who live elsewhere.

In Japan, there’s a strong ethos and established history of ‘befriending’, and English policy has emulated that. Imitation is the best form of flattery, but not when it comes to intellectual property law.

There’s also WHO.  The WHO Global Network of Age-friendly Cities and Communities was established to foster the exchange of experience and mutual learning between cities and communities worldwide.

Any city or community that is committed to creating inclusive and accessible urban environments to benefit their ageing populations is welcome to join.

The Joseph Rowntree Foundation initiative “York Dementia Without Walls” project looked into what’s needed to make York a good place to live for people with dementia and their carers.

They found that dementia-friendly communities can better support people in the early stages of their illness, maintaining confidence and boosting their ability to manage everyday life.

As part of this project, the team also worked with groups of people with dementia to create a dementia-friendly summary of the research.

Thus it can be easily argued that the concept of dementia friendship is generic.

This applies not only to words that begin life as generic terms, but also to words that begin life as brand names but are appropriated by consumers as another word for the types of goods/services they were coined to brand.

This is what happened to the terms “escalator,” “cellophane,” and “aspirin,” which were originally created to serve as marks, but which became so widely used to refer simply to that type of good (any elevated moving stairway, any plastic wrap, any acetylsalicylic acid painkiller) that they lost their ability to brand.

But here, the concept of dementia friendship is already widespread in global policy.

The Alzheimer’s Society have protected their visual mark for “Dementia Friends” on the trademark register for the IPO, as trademark UK00002640312. This is across various “classes”.

A trademark in English law was traditionally used as a “badge of origin”: a mark or sign that would tell purchasers exactly who had made the particular product they were about to buy.

Today, the largest companies in the world value the goodwill that’s embodied in their names in the hundreds of millions of pounds.

Trademarks distinguish the goods or services of one trader from those provided by its competitors: e.g. a smartphone from Samsung compared to a similar one from Apple.

The overzealous use of registering trademarks is demonstrated well in the recent furore over the word ‘candy’ Gamemakers have mounted a protest against King.com after it trademarked the word “candy”.

The company trademarked the word in Europe in a bid to protect its best-selling Candy Crush Saga game. The Candy Jam webpage said the protest was in response to King.com’s action to defend its trademark.

The Candy Jam page accused King.com of being a “bully” and said the issue had now become one of “freedom and creativity”.

Here, trademarking logos for campaigns is wandering into dangerous territory, when most dementia campaigners wish to promote the concept of friendly communities. However, it is reasonable that any society should wish to act against a competitor producing confusing very similar merchandise.

Nonetheless, at an extreme, protecting the trademark, in this case represented by a commercial and corporate firm known to have a penchant for competition law in contemporary NHS legislation by the current Coalition, might be seen as a tad corporate and bullish.

Here there is an intriguing possibility of a “Goliath” medical charity exerting its right one day to take a “David” medical charity to court over an innocuous mix-up where a smaller charity, without good legal resources, setting up its own dementia friends scheme with a confusingly similar logo.

Whilst a trademark protects innovation in English law like other jurisdictions, it is also a monopolistic right which exerts an anti-competitive effect.

This is actually a formidable legal policy issue, known to Barack Obama and Abraham Lincoln.

If it shows ‘mission creep’ in the form of large charities ‘competing’ in the third sector with the help of the commercial law, that’s arguably a problem.

In theory, the Freemasons could wish to argue in court that their motif, being more longstanding, is being infringed by the Alzheimer’s Society symbol.

I am not aware that the Freemasons hold a registered trademark for the “forget-me-not” symbol. If they don’t, they are open to take a claim in the common law of tort of passing off.

However, yet another ‘forget-me-not-esque’ motif also exists on the Trade Marks Register (and do several similar others too.)

And as it is a prior motif by Landsforeningen LEV, it would be up to Landsforeningen to argue it was sufficiently similar. They would have the right to raise an objection as the Alzheimer’s Society registered their ‘dementia friends’ trademark after their ‘forget-me-not’ symbol.

The Alzheimer’s Society would only have to argue that theirs is sufficiently different because of the words “Dementia Friends”, it’s for a different sector entirely, and in a different colour. And they could easily produce survey data to demonstrate there had been no confusion, one speculates.

But the colour combo is unfortunate!

LEV

But you see what I mean?

It gets unnecessarily corporate, complicated and potentially costly to go down this route.

At worst, this registration of a trademark sends a powerful message to any other smaller dementia charities wishing to promote the concept of friends, in a move not dissimilar to pre-emptive “cybersquatting” for a domain name.

A danger here comes down to what you mean by ‘badge of orgin’.

People may think that the Alzheimer’s Society is the sole origin of the idea of friends in dementia, where as I’ve described it comes from a number of sources which have acted rather in parallel, or in a collaborative manner.

On the other hand, it is perfectly reasonable for the Alzheimer’s Society to wish to protect strongly their emblem, in case a competitor tries to copy it in such a way a member of the public might get confused with that precise initiative in which the Alzheimer’s Society have presumably invested quite a lot of time, money and effort.

But we are perhaps taking a leaf now out of the US “competition” book, which caused the market in the NHS in England to be turbo-boosted through the ill-fated “section 75″ and associated Regulations.

In the U.S. non-profit sector, there has been a growing problem with the phenomenon of ‘brandjacking’.

A guest blogpost here describes how the Christmas SPIRIT Foundation accidentally discovered an industry competitor “had created a copycat ripoff of our TweetUp4Troops effort to generate support for the Foundation’s Trees for Troops program”.

Indeed, in the article, the author describes:

“To engage more consumers in the program and to generate financial support for Trees for Troops, the Foundation created and organized TweetUp4Troops events to be held during Veterans Day Week (Nov 7-14). As part of the campaign, the Foundation created a TweetUp4Troops group site, web site and Twitter handle.”

Charities are able  to register a trademark, particularly if they have the funds, a visually attractive and distinctive emblem such that any infringer can take be taken to court, for an injunction or damages (for example).

But is this actually how we want charities to operate, the income source of which includes people who have given up money to further a cause very personal to them?

It is sad that certain charities are tending to work in increasingly corporate ways, with a good understanding of the application of the commercial and corporate law, to secure competitive advantage in an intensely difficult market.

The Alzheimer’s Society clearly has a head start in marketing their ‘Dementia Friends’ initiative, through their badges which can be worn by MPs in parliament.

It also has a very powerful strategic partnership with the Department of Health in promoting the Prime Minister’s Dementia Challenge.

While there is clearly a need for the Alzheimer’s Society to protect their brand in ‘Dementia Friends’, there is a difficult balance to be enforced to make sure that this does not impede smaller entrants to the market of fundraising.

This is especially critical given how difficult it has been for smaller charities and community interest groups involved in dementia to keep going, despite of or because of the Prime Minister’s Challenge.

[Many thanks to C.R. for a discussion of the meanings of an emblem discussed in this blogpost.]

Corrigendum

I incorrectly referred to a ‘Torbay Ostrich’ in an earlier published version of this blogpost. This, of course, doesn’t exist. I was sent however kindly a possible sighting of it.

Torbay ostrich