dementia friends

My personal experience of an introductory day to ‘Dementia Friends’ Champions

Shibley Rahman 3 Comments

OK it’s not heaven on earth – but Kentish Town London does have some merits I suppose.

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To say that I am passionate about the dementia policy in England is an understatement.

Throwing forward, I believe living well with dementia is a crucial policy plank (here’s my article in ‘ETHOS journal’), for which service provision needs a turbo boost through innovation (here’s my article co-written in Health Services Journal).

“Dementia Friends” in reality means rocking up in a venue somewhere near you for about 45 minutes to learn something about the dementias.

Once you sign up on their website, the experience is also backed up by an useful non-public website containing details of training, pre-training materials, and help on how to promote sessions. You can also provide on that website precise details of any ‘Dementia Friends’ information sessions that you run in due course.

I had known of this initiative mainly through Twitter, where I am very active. I find the twitter thread of @DementiaFriends interesting.

Even I’ve been known to get involved in a bit of mass hysteria myself:

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I possibly signed up despite of the substantial interest in the media and social media, what psychoanalysts might call an “abreaction”. There’s a large part of me which feels that I do not need 45 minutes on dementia, having studied it for my much of my final undergraduate year at Cambridge, done my Ph.D., written papers such as this (one of which even appears in the current chapter on dementia in the Oxford Textbook of Medicine), written book chapters on it (which as this one which appears in a well known book on younger onset dementia), and even written a book on living well with dementia.

But Prof Alistair Burns is a Dementia Friend – and he’s the clinical lead for dementia in England.

I went out of curiosity to see how Public Health England had joined forces with the Alzheimer’s Society. I must admit that I am intensely loyal to the whole third sector for dementias, including other charities such as the Joseph Rowntree Foundation, Young Dementia UK, Alzheimer’s BRACE, and Dementia UK.

I have my own particular agendas, such as a proper care system for England, with the provision of specialist nurses such as Admiral Nurses. I think some of the English policy is intensely complicated, best reserved for those who know what they’re talking about – especially people currently living with dementia and all carers including unpaid caregivers.

I personally think the name ‘dementia friendly communities‘ is ill conceived, but the ethos of having inclusive communities, well designed environments and ways of making life easier for people with certain thinking problems (such as memory aids, good signage) highly attractive. It would be unfair in my view for this construct to be engulfed in cynicism, when the fundamental idea is likely to be a meritorious one.

But I don’t think Dementia Friends competes with any of that, and one must be mindful of the gap society had of awareness of dementia.

This gap is still enormous.

And the aim is for people – not just Pharma – to be interested in dementia. These are real people with their own lives, not merely ‘potential subjects for drug trials’ (worthy that the cause of finding an effective symptomatic treatment or even cure might be potentially). But these are people living in the now – take for example the Dementia Alliance International, persons with dementia with beliefs, concerns and expectations of their own like the rest of us.

Only at London Olympia at the “Alzheimer’s Show” [and it is very well I am not a fan of such events which I have previously called “trade shows”], the other week, I presented at London Olympia for my ‘Meet the author session’, arranged on the kind invitation of various people to whom I remain very grateful.

Meet the author

At “The Alzheimer’s Show”, I met within the space of ten minutes a lady newly diagnosed with vascular dementia who did not intend to tell anyone of her diagnosis, and one person married to someone with probable dementia of the Alzheimer type who did not even tell his friends for three years.

It’s a rather badly articulated slogan but the saying ‘no decision made about me without me’ I think is particularly important for dementia.

These are two real (without warning) discussion points from the floor.

“Are people with dementia actually involved with any of the sessions?”

Yes: in fact my pal Chris Roberts (@mason4233) in Wales delivers his Dementia Friends sessions word-perfect for 45 minutes, without telling his audience that he himself lives well with dementia until the very end. Chris tells me this dispels, visibly, preconceived prejudices from his audience members. Chris blogs regularly on his blog, and has written for the ‘Dementia Friends’ blog.

“Why should people with dementia be given special elevated status compared to any other medical condition?”

It’s a difficult one. Some people believe that with dementias people will easily ‘snap out of it’ ‘if they pull themselves together’. This is completely at odds with one of the learning points that dementia is chronic and progressive. And of course people in the real world – viz CCG commissioners – have to decide how much they wish to prioritise dementia ahead of, instead of, etc. other medical conditions such as schizophrenia. But people living with dementia can present with known problems such as forgetting their pin number, and therefore it’s not actually a case about giving people with dementia an ‘elevated status’, but getting them up as individuals to be expected from anyone. Although it’s motherhood and apple pie, it’s very difficult to find, whatever the motive, the intention of dementia friendly high street banking fundamentally objectionable.

Dementia Friends Champions become rehearsed in the programme at one-day sessions across England. What happens is that you watch videos on their website, sign up for a day (where you get to take part in a Dementia Friends session) and then attend the session somewhere close to where you live habitually.

The sessions are run all over England at regular frequency. You sign up for a session, then you get an email quickly afterwards. You go to the meeting.

My meeting started on time. I am physically disabled, so I was grateful for easy access to the venue in Voluntary Action Camden (I could use the lift).

One of the things some of us mean-minded people pick holes in is whether the venue itself might be dementia-friendly. TICK.

I thought so.

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The group dynamics worked really well.

My group consisted of interesting people, all ‘realistic’ in their expectations of shifting the Titanic of messaging of negative memes in the media. Many of my group were particularly interested in social equity, fairness and justice, reading between the lines.

I particularly enjoyed speaking with one delegate who is a NHS consultant in psychiatry. We went through pleasant niceties of what he was examined on in his professional membership exams (in his case the difference between schizophrenia and drug-induced psychosis). But he was great to chat to during the day.

I bored him to death with my example of persons with dementia putting numerous teaspoons of sugar in their cups of tea, on rare occasions, due to ‘utilisation behaviour’, a particular predilection for sweet foods since the onset of dementia, or cognitive estimates problem, a very niche area of cognitive neuropsychology for both of us. But this was simply in an activity on making tea where such private chit-chat was irrelevant; the actual session as delivered, on how to make a cup of tea, was far superior than the two hour version I did in a workshop for my MBA in that well known method known to managers: “process mapping“.

The whole day was presented by Hannah Piekarski (@HannahPiekarski), Regional Volunteering Support Officer for the London and South East region for “Dementia Friends.

I’ve sat through more presentations than you’ve had hot dinners, but the standard of the presentation was excellent. Although the presenter clearly had a corpus of statements to make, the presentation was not contrived at all, and the audience had plenty of opportunity to ask questions at points during the day. The presenter evidently knew what she was doing, and was a very good representative of the Dementia Friends programme. She gave her own ‘Dementia Friends’ session which the group of about twenty found faultless.

Hannah even ran a session after the lunch break on what makes a BAD presentation.

Here are my scrappy notes which I took – and please don’t take this to be representative of the actual discussion of what makes a bad presentation which we had in our group.

PRESENTATION

I SO wish some of my lecturers (including Readers and Professors) had been to Hannah’s session on generic skills in presentations. Whatever you do after ‘Dementia Friends Champions’ day, there’s no doubt that such a session is really useful across various sectors including law and medicine.

You don’t really have to take notes as it’s all fundamentally in their well laid out handbook.

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The day was run with the purpose of not giving you tedious crap on how to run a session. But it was furnished with many useful pointers. For example, I learnt of possible venues such as a local library, church halls, and community centres.

Actually, I have in mind to ask Shahban Aziz, CEO of BPP Students, Prof Peter Crisp (Professor of Law at BPP Law School) and Prof Carl Lygo (also Professor of Law at BPP Law School) whether I might run dementia friend sessions at this law school which I attended for my pre-solicitor training. I’ve always had a bit of a discomfort that lawyers are not really given any introduction to dealing with people with dementia, other than professional regulatory considerations or in direct dealings with the law such as mental capacity? I think it’d be great if law students had a basic working knowledge of what dementias are.

It was nice for me to get out of my flat, and meet a range of people. These people ranged from other people in the third sector, for example the Dementia Action Alliance. They bothered to provide free coffee all day, and a free lunch.

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And when I tweeted that on my @legalaware Twitter account from my mobile phone in the lunch break (you’re told to turn your mobiles off for the day), I received this smartarse (#lol) remark from one of my 12000 followers immediately.

coeliac

You’re given a guidebook. You’re not coerced in any way into becoming a Dementia Friend or Dementia Friend Champion. You’re told specifically having done Dementia Friends you can do whatever point of action you wish, even if that includes supporting another charity other than the Alzheimer’s Society.

You are told that the point of the current dementia strategy in England in no way is intended to be political.  In support of that claim is that the current strategy has overwhelming cross-party support.

The sessions include information about dementia and how it affects people, as well as the practical things that can be done to help people with dementia live well in their community.

I was given resources to answer people’s questions about dementia and suggest sources of further information and support.

After completing the course Dementia Friends Champions can access resources and tools to help set up and run sessions for people who sign up as Dementia Friends.

These resources include exercises, quiz sheets, bingo sheets, book club ideas and reading suggestions. You’re made very familiar with the content of ‘Dementia Friends’ as they helpfully provide ALL the material on the website when you sign up. They don’t hold any of it back. The point is you go away and run the whole session as ‘Dementia Friends’. Having seen how the 45 minutes works, I have no burning desire to change any of it.

Having said that, there are one or two things I would do differently, hypothetically. The format makes it very clear the presenter is not an expert in dementia or counsellor. I think this actually helps in that an expert possibly could write an hour long essay on each of the five statements for finals, and get truly bogged down in “paralysis by analysis”.

One of the possible features of the ‘Dementia Friends’ session is comparing dementia to a bookcase. This is a well described metaphor, first proposed by Gemma Jones. I have indeed used it to propose a scheme of explaining ‘sporting memories’, an initiative which recently won the Alzheimer’s Society Dementia Friendly Communities national initiatives awards.

Here’s my pal Tony Jameson-Allen picking up his gong.

Tony

There’s a bit in the explanation of the bookcase analogy that gets quite technical in fact.

With the presenter of the session having said that he or she is not an expert in dementia or counsellor, it seems counter-intuitive to me that there is an explanation of the organisation of memory using two highly technical locations in the brain, the hippocampus and amygdala. But things like that are not a ‘deal maker’ or ‘deal breaker’ for me. There’s an excellent video of a presentation of the bookcase analogy by Natalie Rodriguez floating around, in fact, but we were all encouraged to be explain the analogy ‘live’ in our sessions, ‘rather than playing the DVD’.

I have absolutely no problem with the material being pre-scripted. I used to supervise neuroscience and experimental psychology for various colleges at Cambridge between 1997 and 2000 inclusive, and, whilst the guidance for teaching that was not as intense, it’s fair for me to mention that supervisors knew exactly what they had to cover for their students to achieve at least an upper second in finals.

Dementia Friends Champions, like me, are then be encouraged to run Dementia Friends sessions at lunch clubs, educational institutions and other community groups, but it could also include ideas such as arranging a meeting to talk with a small group of friends.

I intend to run five sessions to achieve about 100 further dementia friends. I conceptually find targets anywhere quite odious, and see exactly where this ambition has come from (Japan). On the other hand, nobody is a clairvoyant. The fact the number exists at all (aiming for March 2015) is a testament that this programme is being taken seriously. Had the number been set at 400, then we would all have said ‘job done’ some time ago.

I am actually, rather, amazed that somebody somewhere has signed off for a national programme to invite ordinary members of the public to attend free of charge a day on delivering the Dementia Friends programme, with nice company, and of course that free coffee and lunch.

I am also amazed that the actual substrate of the information sessions for ‘Dementia Friends’ is being offered to the member of the public free of charge, and it effectively has been paid for by Government.

The operational delivery of ‘Dementia Friends Champions’ day was totally faultless from start to finish. Even though I have nothing to do with their output, the Alzheimer’s Society here in England have done a brilliant job with it.

And finally I’ve tended to query whether it can be a genuine ‘social movement’ which so much resource allocation.

But people are genuinely interested in the programme, as these tweets to me demonstrate, I feel:

Tweet 1

Tweet 2

Look.

In a different jurisdiction – Australia – a close friend of mine, Kate Swaffer (@KateSwaffer), blogs daily on her busy life living with dementia, which includes being an advocate, travelling, cuisine (Kate is very experienced in sophisticated cooking), a background in healthcare, a student at the University of Wollongong, and what’s it like to live with dementia after being given the diagnosis. Her blog is here.

Chris, Norrms and Kate are all quite different – like the rest of the population – getting on with their lives. And as the very famous adage goes, once you’ve met one person living with dementia, you’ve done exactly done. You’ve met only one person with dementia.

And there’s clearly a huge amount to be done. Also at the Alzheimer Show one carer reported a person with dementia being ‘lost to the system’, completely unknown to anyone for care for three years.

I had a huge volume of concerns about this initiative, and I’m no pushover as far as being ‘in with the in-gang’ is concerned. But I strongly recommend you park your misgivings and go there wanting to be a part of a “change”.

I went on the day after the passing away of the incredible Dr Maya Angelou.

As she said, “If you don’t like something, change it. If you can’t change it, change your attitude.”

Living well with corporate capture. What is the future of the Prime Minister’s Dementia Challenge?

Shibley Rahman 0 Comments

“Citizens have become consumers with status proportional to purchasing power, and former public spaces have been enclosed and transformed into private malls for shopping as recreation or “therapy.” Step by step, private companies, dedicated to enriching their owners, take over the core functions of the state. This process, which has profound implications for health policy, is promoted by politicians proclaiming an “ideology” of shrinking the state to the absolute minimum. These politicians envisage replacing almost all public service provision through outsourcing and other forms of privatisation such as “right to provide” management buyouts. This ambition extends far beyond health and social care, reaching even to policing and the armed forces.”

And so write Jennifer Mindell, Lucy Reynolds and Martin McKee recently about ‘corporate capture’ in the British Medical Journal.

Alistair Burns, England’s clinical lead on dementia, recently concluded a presentation on the clinical network for London with the following slide:

Reminyl Speaker Training Showfile

Alistair clearly does not mean ‘Dementia is everyone’s business’ in the “corporate capture” sense. Instead, he is presumably drawing attention to initiatives such as Brighton and Sussex Medical School’s initiative to promote dementia awareness at all levels of an organisation (and society).

 

Microsoft PowerPoint - H1 Dementia Care Event

 

The comparison with diabetes is for me interesting in that I think of living well with diabetes, post diagnosis, as conceptually similar to living well with dementia, in the sense that living well with a long term condition is a way of life. And with good control, it’s possible for some people to avoid hospital, becoming patients, when care in the community would be preferred for a number of clinical reasons. Where I feel the comparison falls flat is that I do not think that it is possible to measure outcomes for living well with dementia easily. Sure, I have writen on metrics used to measure living well with dementia, drawing on the work of Sube Banerjee, Alistair’s predecessor. It might be possible to correlate good control with a blood test value such as the HBA1c, and it steers the reward mechanism of the NHS for rewarding clinicians for failure of management (e.g. laser treatment in the eye, foot amputation, renal dialysis), but the comparison needs some clinical expertise to be pulled off properly. The issue of breaking down ‘barriers’ between primary and secondary care is an urgent issue, and ‘whole person care’ or ‘integrated care’ may or may not help to facilitate that. But a future government must not get too enmeshed in sloganising if it means forgetting basic requirements of foot soldiers on the ground, such as specialist dementia nurses including Dementia UK’s ‘Admiral nurses’.

But the question of who gives the correct diagnosis of dementia, or even verifies it, won’t go away.

Having done Dementia Friends myself, a Public Health England the Alzheimer’s Society joint initiative, I feel the initiative is extremely well executed from an operational level. I think it’s pushing it for a member of the public to think that an old and doddering lady crossing the lady might have dementia and requires help, as medicalising ageing into dementia is a dangerous route to take. The £2.4 million programme is funded by the Social Fund and the Department of Health. Public Health England are planning to undertake an evaluation of the Dementia Friends Campaign launched on 7 May 2014, which will include tracking data and prevention message testing.

There are a number of important clinical points here. There are crucial questions as to whether persons themselves with a possible diagnosis, friends and/or families themselves want a diagnosis of dementia. A diagnosis of dementia in anyone’s book is a life-changing event. The concerns of the medical profession have been effectively rehearsed.  Notwithstanding, the ambition that, by 2015, two thirds of the estimated number of people with dementia should have a diagnosis, with appropriate post diagnostic support has been agreed with NHS England.  To support GPs and other primary care staff, a Dementia Roadmap web-based tool has been commissioned by the Department of Health from the Royal College of General Practitioners. The roadmap has now been officially launched, and will provide a framework that local areas can use to provide local information about dementia from health, social care and the third sector to assist primary care staff to more effectively support patients, families and carers from the time of diagnosis and beyond. Feedback from relevant stakeholders will be most interesting.

People with dementia need to be followed up across a period of time for a diagnosis of dementia to be reliably made, and ‘in the right hands’, i.e. of a specialist dementia service. Whilst NHS England are working with those areas with the longest waits, with the aim of ensuring that anyone with suspected dementia will not have an excessive wait for a timely assessment, there has to be monitoring of who does that timely assessment and whether it produces an accurate result. At an extreme example, clinical diagnoses of rarer dementias, particularly younger onset, can only be done effectively by senior physicians with reference to two clinical histories, two clinical examinations, neuroimaging (e.g. CT, MRI, or even fMRI or SPECT), lumbar puncture/cerebrospinal fluid (if not contraindicated), cognitive psychology, EEG, or even – extremely rarely – a brain biopsy. But this would be to propose an Aunt Sally argument – many possible cases of dementia can be tackled by primary care with appropriate testing perhaps in the future, and certainly adequate resources will need to be put into primary care for training of the workforce. Or else, it is literally a ‘something for nothing’ approach.  Some people have ‘mild cognitive impairment’ instead, and will never progress to dementia.There are 149,186 dementia friends currently. This number is rapidly increasing. The goal is one million.Furthermore, there are many people given a diagnosis of dementia while alive who never have it post mortem. And the diagnosis can only be definitively made post mortem. Seth Love’s brilliant research (and he is an ‘Ambassador’ to the Alzheimer’s BRACE charity) is a testament to this. Anyway, NHS England and the Department of Health are working with the Royal College of Psychiatrists to encourage more Memory Services to become accredited.

And when is screening not officially screening? This continues to require definition in England’s policy. The original Wilson and Jungner (1968) principles have appear to have become muffled in translation. The CQUIN has led to over 4,000 referrals a month, but this will only contribute to improving diagnosis rates for dementia if this is not producing a tidal wave of false positives. For quarter 3 2013/14, 83% of admitted patients were initially assessed for potential dementia. Of those assessed and found as potentially having dementia, 89% were further assessed. And of those diagnosed as potentially having dementia, 86% were referred on to specialist services. But we do need the final figure. This policy plank for me will also go back to the issue of whether policy is putting sufficient resources into the diagnostic process and beyond. Stories of people being landed with a diagnosis out of nowhere and given not much further information than an information pack are all too common. A well designed system would have counselling before the diagnosis, during the diagnosis, and after the diagnosis.

Ideally, an appointed advisor would then see to continuity of care, allowing persons with dementia to be able to feel confident about telling their diagnosis to friends and/or family. The advisor would ideally then give impartial advice on social determinants of health, such as housing or education. Policy may be slowly moving in this direction. In April 2014 NHS England published a new Dementia Directed Enhanced Service (DES) for take up by GPs to reward practices for facilitating timely diagnosis and support for people with dementia. Patients who have a diagnosis of dementia will be offered an extended appointment to develop a care plan. The care planning discussion will focus on their physical and mental health and social needs, which will include referral and signposting to local support services. From 10 signatories in March 2012, to date, there are now 173 organisations representing nearly 3,000 care services committed to delivering high quality, personalised care to people with dementia and their carers.

But all this requires money and skill. There is no quick fix.

The areas of action for the Prime Minister’s Dementia Challenge are: dementia friendly communities, health and care and improving research.

In November 2012, The Secretary of State for Health announced a £50 million dementia-friendly environments capital investment fund to support the NHS and social care to create dementia-friendly environments. The term ‘dementia friendly communities’ is intrinsically difficult, for reasons I have previously tried to introduce. A concern must be the ideology behind the introduction of this policy in this jurisdiction. The emphasis has been very much on making businesses ‘business friendly’, which is of a plausible raison d’être in itself.  This, arguably, is reflected in the list of chief stakeholders of the dementia friendly communities champion group.

Dementia friendly communities board

It happens to fit very nicely with the Big Society and the ‘Nudge’ narrative of the current government. But it sits uneasy with the idea that it is in fact a manifestation of a small state which bears little responsibility apart from overseeing at an arm’s length a free market. The critical test is whether this policy plank might have improved NHS care. 42 NHS and 74 Social Care National pilot schemes were approved in June 2013 as national pilots. Most of the projects have now been completed, and they will be evaluated by a team of researchers at Loughborough University over the coming months. The evaluation will provide knowledge and evidence about those aspects of the physical care environment which can be used to provide improved care provision for people with dementia, their families and carers. But the policy has had some very exciting successes: for example the ‘Sporting Memories Network’, an approach based on the neural re-activation of sporting autobiographical memories, recently scooped top prize for national initiative in the Alzheimer’s Society Dementia Friendly Communities Awards 2014.

And meanwhile, the care system in England is on its knees. Stories of drastic underfunding of the care system are extremely common now. An army of millions of unpaid family carers are left propping up a system which barely works. There appears to be little interest in guiding these people, with psychological, financial and/or legal burdens of their own, to reassure them that all their hard work is delivering an extraordinary level of person-centred care.

But this for me was an inevitable consequence of ‘corporate capture’. The G8 World Dementia Council does not have any representatives of people with dementia or carers.

That is why ‘Living well with dementia’ is an important research strand, and hopefully one which Prof Martin Rossor and colleagues  at NIHR for dementia research will give due attention to in due course. But all too readily research into innovations, ambient assisted living, design of the ward, dementia friendly communities, assistive technology, and advocacy play second fiddle to the endless song of Big Pharma, touting how a ‘cure’ for dementia is just around the corner. Yet again.

So what’s the solution?

The answer lies, I feel, in particularly what happens in the next year and beyond.

The Prime Minister’s challenge on dementia was developed as a successor to the National Dementia Strategy, with the challenge of delivering major improvements in dementia care, support and research. It runs until March 2015. Preparatory work to produce a successor to the Challenge from the Department of Health (of England) is now underway in order that all the stakeholders can fully understand progress so far and identify those areas where more needs to be done. The Department of Health have therefore commissioned an independent assessment of progress on dementia since 2009.

There are a number of other important pieces of work that are underway, which will provide information and evidence about progress and gaps. For example, according to the Department of Health, the All Party Parliamentary Group on Dementia chaired by The Baroness Sally Greengross OBE are producing a report focused on the National Dementia Strategy, and the Alzheimer’s Society has commissioned Deloitte to assess progress and in the autumn will be publishing new prevalence data. Indeed the corporate entity known as Deloitte Access Australia (a different set of management consultants in the private sector) produced in September 2011 a report on prevalence of dementia estimates in Australia. Deloitte themselves have an impressive, varied output regarding dementia. But of course they are not interested in dementia solely. “Deloitte” is the brand under which tens of thousands of dedicated professionals in independent firms throughout the world collaborate to provide audit, consulting, financial advisory, risk management, tax, and related services to select clients.

But also it appears that the Alzheimer’s Society, working with NHS England, has commissioned the London School of Economics to undertake a review into the accuracy of dementia prevalence data. The updated data is expected to be published in Autumn 2014. Apparently, once all this work has been concluded a decision will be made on the focus and aims of the successor to the PM’s challenge.

The current Coalition government has been much criticised in parts of the non-mainstream media for the representation of corporate private interests in the Health and Social Care Act (2012).

I believe people who are interested in dementia, including persons with dementia, caseworkers and academics, should make their opinions known to the APPG in a structured articulate way in time. I think not much will be achieved through the pages of the medical newspapers. And only time will tell whether the new dementia strategy will emerge in time before the next general election in England, to be held on May 7th 2015. However, even the most ardent critics will ultimately. The present Government should be congratulated for having made such a massive effort in educating the country about dementia, which is a necessary first step towards overcoming stigma and discrimination. The Alzheimer’s Society has impressively delivered its part of it, it appears, but future policy will benefit from much more ‘aggressive inclusion’ of other larger stakeholders (e.g. the Joseph Rowntree Foundation, Dementia UK) and smaller stakeholders.

And special thanks to Alistair Burns, England’s clinical lead for dementia, a Chair at Manchester, and much more.

It could be a case of: all change please. But a huge amount has been done.

The five key messages of ‘Dementia Friends’

Shibley Rahman 5 Comments

Ideally, at the end of a ‘Dementia Friends’ session, each participant will have learned the five key things that everyone should know about dementia, and aspired to turn an understanding into a commitment to action.

In this blogpost, I wish just to discuss a little bit these messages in a way that is interesting. If you’re interested in finding out more about ‘Dementia Friends’, please go to their website. Whatever, I hope you become interested about the dementias, even if you are not already.

I’ve got nothing to do with writing ‘Dementia Friends’, but the following I reckon is a view which would be given by anyone like me who has worked in this academic field for a very long time.

I am a physician. I did my PhD in early diagnosis of frontotemporal dementia in Cambridge. I am a Dementia Friends Champion in London.

 

1. Dementia is not a natural part of aging.

This is an extremely important message.

However, it is known that the greatest known risk factor for dementias overall is increasing age. The majority of people with Alzheimer’s disease, typically manifest as problems in new learning and short term memory are indeed 65 and older.

But Alzheimer’s disease is not just a disease of old age. Up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

2. It is caused by diseases of the brain.

Prof John Hodges, who did the Foreword to my book, has written the current chapter on dementia in the Oxford Textbook of Medicine. He also supervised my Ph.D. The chapter is here.

There is a huge number of causes of dementia.

List

The ‘qualifier’ on this statement is that the diseases affect the brain somehow to produce the problems in thinking. But dementia can occur in the context of conditions which affect the rest of the body too, such as syphilis or systematic lupus erythematosus (“SLE”).

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

3. It’s not just about memory loss.

This statement is perhaps ambiguous.

“Not just” might be taken to imply that memory loss should be a part of the presenting symptoms of the dementia.

On the other hand, it might be taken to mean “the presentation can have nothing to do with memory loss”, which is an accurate statement given the current state of play.

John (Hodges) comments:

“The definition of dementia has evolved from one of progressive global intellectual deterioration to a syndrome consisting of progressive impairment in memory and at least one other cognitive deficit (aphasia, apraxia, agnosia, or disturbance in executive function) in the absence of another explanatory central nervous system disorder, depression, or delirium (according to the Diagnostic and Statistical Manual of Mental Disorders , 4th edition (DSM-IV)). Even this recent syndrome concept is becoming inadequate, as researchers and clinicians become more aware of the specific early cognitive profile associated with different dementia syndromes.”

I remember, as part of my own Ph.D. at the University of Cambridge on the behavioural variant of frontotemporal dementia,virtually all the persons with that specific dementia syndrome, in my study later published in the prestigious journal Brain, had plum-normal memory. In the most up to date global criteria for this syndrome, which should be in the hands of experts, memory is not even part of the six discriminating features of this syndrome as reported.

Exactly the same arguments hold for dementia syndromes which might be picked up through a subtle but robust problem with visual perception (e.g. posterior cortical atrophy) or in language (e.g. semantic dementia or progressive (non-) fluent aphasia, logopenic aphasia.) <- note that this is in the absence of a profound amnestic syndrome (substantial memory problems) as us cognitive neuropsychologists would put it.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

4. It’s possible to live well with dementia.

I of course passionately believe this, or I wouldn’t have written a book on it. It is, apart from all else potentially, the name of the current English dementia strategy.

 

[For a further discussion of this statement, please see another blogpost of mine.]

 

 5. There is more to the person than the dementia.

This is an extremely important message. I sometimes feel that medics get totally lost in their own clinical diagnoses, backed up by a history, examination and relevant investigations; and they become focused on treating the diagnosis rather than the person with medications. But once you’ve met one person living with dementia, you’ve done exactly that. You’ve met only one person living with dementia. And it is impossible  to generalise for what a person with Alzheimer’s disease at a certain age performs like. We need to get round to a more ‘whole person’ concept of the person, in not just recognising physical and mental health but social care and support needs, but realising that a person’s past will influence his present and future; and how he or she interacts with the environment will massively influence that.

 

[For a further discussion of this statement, please see another blogpost of mine.]

The real “timebomb” for dementia is the number of unsafe diagnoses from non-specialists

Shibley Rahman 1 Comment

erythema chronicum migrans

 

In a popular group on “Facebook”, somebody has written the following:

“This will be my last message on this group as my husband has finally received the diagnosis that we have been waiting for. 
For years he has been diagnosed with dementia, firstly Lewy body Dementia and then for the last 2 years it has been FrontoTemporal Dementia but now we know the truth – he has Lyme Disease caught from a tick bite he didn’t know he had during our trip to The Rockies in 2003. For the last 10 years he has been seeing a procession of medical professionals including Neurologists, Psychologists and Psychiatrists but they have all said that he didn’t typically fulfil the criteria for any of the conditions that he has been diagnosed with but they have treated him as though he did, therefore he has had a boat-load of medication that his body didn’t need. If he had been tested for Lyme when he first started to baffle the medical profession then it could have saved us many years of traumatic symptoms, incorrect treatment and medical professionals openly saying that they felt his symptoms were ‘all in his head’, ‘nonsense’ and a ‘childish ploy for attention’. I THINK NOT ! Unfortunately we have had to go private to get the testing done but now we have a definitive diagnosis and a treatment plan. – it is typically successfully treated with an extended course of intravenous antibiotics and supplements to support the body through the treatment period. There is now a very bright light at the end of a very long, very dark tunnel.


I do appreciate that many of you will not agree to this message appearing on here but it is entirely possible that may be a few who have been in a similar position to my husband and I would urge you to consider the possibility of obtaining private testing (the tests are sent to Germany and USA as the tests done there are more sensitive and accurate than in UK) in the likelihood of having had a tick bite at some point. I have attached a short video that explains the problems with getting Lyme diagnosed and once again apologise if this message seems inappropriate.


http://www.endowmentmed.org/pdf/updatelyme.pdf“

 

 

 

 

The current Government, in partnership with the Alzheimer’s Society, is trying to improve the diagnosis rates of dementia.

The medical profession has been consistently warning, on deaf ears, that every misdiagnosis of dementia is potentially a tragedy.

For every incorrect diagnosis of dementia, a person is being denied treatment for the correct diagnosis.

For every incorrect diagnosis of Alzheimer’s Disease, a person is being denied treatment for a different, but correct, cause of a cognitive problem.

It is dangerous that this policy exists in England, which promotes ‘dementia awareness’, but which has not improved resources for specialist clinical services for the diagnosis, investigation and management of dementias.

Dementia is part of a wide ‘differential diagnosis’, meaning that many conditions can mimic dementia particularly in the elderly.

The infective agent of Lyme disease is the spirochaete Borrelia burgdorferi, usually transmitted in tick bites.

The disease occurs sporadically in parts of North America, Europe and Asia, but true prevalence is unknown. Infection can lead to a whole manner of presentations in any part of the nervous system.

Clinical symptoms include an acute rash (erythema chronicum migrans) at the site of the bite within a month, which is indicative. Relapsing, migratory, large-joint arthropathy and carditis may occur.

Overall, 10–15% of affected individuals develop neurological symptoms. Cognitive impairment, inattention and emotional lability may be present, with usually mild chronic confusional state.

Subjective memory loss has been suggested but a clear dementia syndrome is very rare is very rare. 

Specialist testing would have been necessary to identify this in the NHS.

For an investment equivalent to the cost of ‘Dementia Friends’, £2.4 million, it’s quite likely that a disaster like this would have been avoided in this jurisdiction.

The timebomb which is ticking is not the numbers of dementia.

Do pardon the bad pun.

In this jurisdiction, evidence now points to a falling prevalence of dementia cases.

The real “timebomb” for dementia is the number of unsafe diagnoses from non-specialists.

There are fewer than 365 days until the next general election on some happier news.

 

Through raising awareness of dementia, we must ensure befriending doesn’t become belittling

Shibley Rahman 6 Comments

Dementia Awareness Week 2014 is this year Sun 18th May – Sat 24th May 2014.

Some ‘symbols’, such as the ‘Purple Angels’, clearly offer much reassurance.

Angel

I am genuinely interested in what ‘dementia awareness’ is.

Raising awareness can mean different things to different people.

It’s easy for me to overestimate what dementia awareness might be, as I have done my undergraduate finals, my Ph.D and my postdoc in brain conditions, and mainly dementia.

I’ve never seen a Dementia Friends script.

I’m mildly worried about whether the information in this script is accurate, but not any more than any other information from any other awareness publications.

Having worked in two head offices of large medical charities, I am more than aware of the crap that is used for fundraising.

But I do worry in case what you’re promoting is simply a source of income, and dwarfs entirely what the message is.

The message here is raising awareness of all things dementia.

We have to be very careful that befriending initiatives do not inadvertently end up belittling the whole issue of dementia.

I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ air fresheners (spoof).

A1 copy

I don’t particularly mind if people wish to purchase ‘Friends for Dementia’ furry care dice (sic) (spoof), either.

A2 copy

Some thought inevitably has to go into ‘raising awareness of what’?

Chris Roberts, a supporter of the ‘Dementia Friends’ programme, suggested,

“To educate people, so they can spot symptoms early, help others in the community and help carers cope better, to show people in early stages are not to be written off, it’s all about education.”

This is of course a laudable aim.

But spotting symptoms of dementia in yourself may not be as easy as spotting a breast lump or a testicular lump (which admittedly can be difficult to spot).

Some people living with dementia are unaware of their symptoms, a phenomenon known to clinicians as ‘anosognosia’.

Raising awareness of the practical difficulties that Admiral Nurses have had in being commissioned?

And the stories keep on coming of potential or actual actioned cuts of dementia services in the real world: such as this one in Devon, and one in Essex.

I asked Kim Pennock, a prominent dementia campaigner in England, whether campaigners for dementia were concerned about cuts in social care.

“- many are now shouting loudly as the cuts are ridiculous and will put vulnerable people at risk”

Meanwhile, the Alzheimer’s Society have introduced a scheme for accreditating ‘dementia friendliness’.

The process is designed to enable communities to be publicly recognised for working towards becoming dementia-friendly and to show that they are following common criteria that are based on “what we know is important to people affected by dementia and will truly change their experience.”

It would be odd if the Alzheimer’s Society would be the sole arbiter of dementia friendliness.

I find this particularly perplexing as the Joseph Rowntree Foundation have done wonderful work on dementia friendly cities such as York.

Also I really cannot praise enough the work by ‘Innovations in dementia‘.

Innovations in Dementia has in the past been working through the Ageing Well programme with two areas, Hampshire and Sheffield, to support their work to create dementia friendly communities.

As part of the work in Hampshire, they have produced a dementia friendly communities toolkit, which was designed to support work at a local level.

The tools have even been used by the Alzheimer’s Society locally.

But the Alzheimer’s Society has a massive business advantage nationally.

Its ‘Dementia Friends’ programme has massive funding.

The Alzheimer’s Society also has capable resources for its marketing.

The Alzheimer’s Society has just appointed Lida to creating a series of campaigns that aim to increase the acquisition of new supporters and grow its mass participation events.

But accreditation can be good for ‘competitive advantage’.

The UK division of Hilton Worldwide has become the first hotel company to be awarded the Carbon Trust Standard after measuring and reducing its carbon footprint.

The award requires organisations to measure, manage and reduce their carbon footprint and make reductions vear-on-year.

Hilton believes the accreditation will give it a competitive advantage over rivals when the government’s Carbon Reduction Commitment league table begins next year.

There’s no doubt in my mind that dementia ‘friendliness’, however delivered, is a wonderful societal aim.

But it should not be a cover for cuts in social care or in the NHS.

And also it’s widely established that ‘Dementia Friends’ cannot be used in place of training for those who need more than basics.

I, too, will be doing my bit too though for raising awareness too.

I’ll be doing a ‘Meet the author’ slot at the London Alzheimer’s Show.

Please follow the Show on Twitter (@AlzheimersShow).

I think also it’ll be possible to see my book, a book which is very ‘un-medical’ in its approach. It’s all about celebrating the individuality of a person, what he or she can do, and how the environment is so important for quality of life.

It’s a different way of doing things.

But that’s also raising awareness.

Let’s have a honest debate about whether off-the-shelf packages ‘bestow’ personhood

Shibley Rahman 3 Comments

We are continually being reminded that ‘money does not grown on trees’. Funds are said to be ‘unsustainable’. You’ve heard it all before.

And yet there is potentially a scanty evidence base for certain initiatives in the NHS, where every penny does count. For every contract awarded, there’s an equal and opposite contract which has not been awarded. Recent problems in health policy to do with the English NHS shows a genuine problem with trust, whether it’s implementation of the Health and Social Care Act (2012) or “Care Data”.

As entities get bigger, their presentation tends to get slicker. With economies of scale, things can be done more ‘efficiently’. The overwhelming danger is that everything becomes alarmingly centralised, actually deprofessionalising and lowering standards of what is being delivered. It can become all too easy to run courses, get the facilitator to run the DVD and read a pre-prepared script, and, even if the end-user doesn’t pay for it, the taxpayer does.

But the culture in the NHS is not right. People are scared to ‘speak out safely’ against practices which they do not agree with, even if the reasons are perfectly sound. The pattern of behaviour at people who have criticised, with good intentions, in healthcare has tended to follow a similar pattern: ignore – discredit – attack – ignore – ostracise. But increasingly as the same grant winners tend to get more grants, as they built up a dominant presence and brand loyalty, they are in a position to flex litiginous muscles.

It all has an “Emperor’s New Clothes” feel about it. “The Emperor’s New Clothes” is a famous short story by Hans Christian Andersen about two weavers who promise an Emperor a new suit of clothes that is invisible to those unfit for their positions, stupid, or incompetent. When the Emperor parades before his subjects in his new clothes, a child cries out, “But he isn’t wearing anything at all!” And that’s the position we’ve reached with various prestigious brand leaders.

And yet it is fundamentally an anethema to the whole basis of personhood as conceptualised by Tom Kitwood. There is an increasing army of people who are quite horrified, like me, how personhood has become transformed into marketing shills and glossies in a standardised package corporate-feeling sort-of-way.

There’s certainly concern about how dementia training and person-centred approaches have become commercialised, in a way that would have made the late great Tom Kitwood shudder.

Kitwood’s approach was more conceptually and theoretically developed, and highlights the importance of the person with dementia rather than the disease process itself. Kitwood argues that people with dementia do not lose their personhood, but rather can be maintained through relationships with other people.

Thus, Kitwood defines personhood as ‘a standing or a status that is bestowed on one human being, by another in the context of relationship and social being’. Within person-centred care therefore, the personal and social identity of a person with dementia arises out of what is said and done with them.

In other words, it IS highly personal and individual.

Anyone who has worked in the NHS knows likewise that one junior doctor covering all the medical wards in a hospital and acute admissions is bound to be rushed off his or her feet. Any emergency room nurse facing the common situation of being ten patients behind will know exactly how stressful the job is, propelled by ‘efficiency savings’ the NHS “MUST” make to resolve the “funding gap”.

A concerning strand has emerged therefore of marketising and selling compassion. This is a very strange concept as it implies that compassion in some way can be “imposed”.

In October 2013, it was mooted that  unregistered care support workers wouldsoon have to obtain a “care certificate” to show they have completed basic training before they are allowed to work unsupervised, the government has announced.

Health minister Earl Howe has revealed that Health Education England would lead work on developing a certificate of fundamental care, as recommended by Camilla Cavendish in her review of regulation and training in the sector earlier this year.

He said it was too early to know what the care certificate would look like, but said it would build on the national minimum training standards published by Skills for Care and Skills for Health in March, as Cavendish recommended.

This policy plank is incredibly difficult, for fear that the implication is that certain care staff are deliberately ‘withholding’ compassion. But it is patently more of a problem that junior care and nursing staff are in certain cultures finding it very difficult to speak out against unsafe levels of staffing cuts (a common strand in the dangerous ‘Keogh trusts’.)

The way some commissioners are tending to behave is fair-and-square a ‘tick box’ culture. What are we doing today?

“C” for compassion

And “D” for dementia friendly communities.

A Dementia Friends Champion is a volunteer who encourages others to make a positive difference to people living with dementia in their community. They do this by giving them information about the personal impact of dementia, and what they can do to help.

It is not supposed to be specialist in training for dementia.

But it can be argued that the whole set-up of Dementia Friends and Dementia Champions gives their organisers an advantage. It must have a business model somewhere, and presumably the Alzheimer’s Society is working with the current Government to deliver this initiative? Virtually every newspaper article about dementia these days mentions ‘Dementia Friends’. Parliamentarians mention it. And yet there is no mention of other dementia societies, such as Alzheimer’s BRACE or Dementia UK. For every penny in one direction, a penny is lost in another direction.

A strange phenomenon is that you don’t need to have any particular experience or skillset to be a Dementia Friends Champion.

This level of standardised packaging of ‘a training’  therefore has two inherent problems. Firstly, it denies the whole ethos of Kitwood’s bestowment of personhood. Secondly, it lends itself too easily to a ‘tick box’ culture from commissioners who can say ‘they’ve done dementia’ in a race to the bottom. And people who’ve done the Dementia Friends often report a dubious relationship about whether it is or it is not the Alzheimer’s Society, parking aside the statement that “Dementia Friends is an Alzheimer’s Society” initiative at the bottom of the ‘Dementia Friends’ website.

If a charity is being supported by Government in delivering the Dementia Challenge, this should be made much much clearer. This is because the charity ‘market’ is itself being distorted. And furthermore with access to the media commercial endorsements can deprive others of media attention, while ‘picking winners’.

The Alzheimer’s Society website reports:

“Our high streets are set to become more dementia friendly following a commitment from major British businesses today (Friday 28 February).

Our high streets are set to become more dementia friendly following a commitment from major British businesses today (Friday 28 February). Argos, Homebase, Marks and Spencer, Lloyds Pharmacy and Lloyds Banking Group, backed by Health Secretary Jeremy Hunt, have committed to create over 190,000 Dementia Friends in shops and banks across the UK.”

Certainly the staff at the Alzheimer’s Society are brilliant, and totally devoted to the cause.

This was Ian McCreath today.

and this emphasising that ‘Dementia Friends’ like the NHS is ‘free at the point of use':

Apparently the intention is that “Dementia Friends” is not ‘training’ as such:

But there is unfortunately a perception of “training” from two separate sources:

and they weren’t the only ones:-

but this is also true it turns out in terms of where the money is actually coming from:

Funding of dementia friends
so the money must be going somewhere.

Dementia is clearly a ‘good market’, and so is ‘compassion’ despite inability of some people in being to define it properly.

Nobody is denying the rôle for both to be prominent planks in English dementia policy, but the public needs to have trust that these are all effective use of taxpayers’ money. People who’ve done thousands of home visits, albeit as unregistered dementia care workers, including carers and other careworkers, or even people living with dementia, will have qualms about people without any specialist training themselves of dementia raising dementia awareness.

We do need an honest debate about how effective these initiatives are, especially in relation to the ‘getting most of your buck’ idea. The system is open to abuse, with powerful people getting more powerful, as a result of who you can get to deliver  your package fast and at the most competitive price.

But there’s scope to be positive.

But this has been an all too predictable consequence of a particular approach which has been festering in England here for many years now.

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