Alzheimer’s Society

A need for much more effective regulation for dementia charities

Shibley Rahman 0 Comments

All governments in the UK have recently thought about ‘reforming public services’, mostly in the context of public-private partnerships (PPP) or the private finance initiative (PFI). Third sector organisations, such as social enterprises and charities, especially large ones, are acting in increasingly private or even corporate ways.

Many feel that this has now become a dangerous policy issue in dementia in England.

There is much goodwill towards dementia as a cause, not least because there are 800,000 people living with dementia currently in the UK. On account of this, there should be a moral onus for fundraisers and politicians to act in the general interests of all people with dementia, and carers.

Take for example the report of the “Dementia Friends” initiative.

It is reported as, by 2015, 1 million people becoming Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

A newspaper article on dementia will now have a standard format. There’ll be the story itself, a bit about dementia, and invariably a bit about Dementia Friends. But the situation is very serious indeed. It wouldn’t be tolerated if all the discussions of groceries in newspapers or online media only made references to Sainsbury’s.

This is clearly problematic for other charities such as the Joseph Rowntree Foundation, who have their own longstanding friendship initiatives, but who have never publicly complained about this situation.

When the State goes into partnership with third sector organisations, the need for much more effective regulation in public-private partnerships is imperative.

This is what the OECD had to say about the issue in their document “Recommendation of the Council on Principles for Public Governance of Public-Private Partnerships May 2012″:

“Sound regulatory policy promotes the efficient functioning of regulatory agencies by ensuring that they operate under an appropriate and clear mandate, with the necessary independence from political influence and regulated subjects, that they are appropriately resourced and equipped, and that their decision-making is fully transparent and accountable,”

“Where PPPs are employed in the delivery of infrastructure facilities with natural monopoly characteristics, the role, design and organisation of regulators is important to secure value for money for the public sector and protect users and consumers. This role should be clear to all (staff, regulated entities and the community).”

“The appropriate sector regulator should consequently be consulted in the project design and subsequently monitor compliance with regulated service standards. This role is important not only in shaping the markets, but also with concrete issues such as service quality, profitability, tariffs and prices. Of particular interest in monopoly-like situations is the degree of profitability compared to the sector average using various benchmarks.”

There are good business management reasons why such entities are able to exert monopoly-like effects. Large organisations benefit from ‘economies of scales’, meaning that it is cheaper to do things in bulk. And large organisations can afford, say, to attend conferences, pay for posters, stand space, marketing pamphlets, etc.

It is simply impossible for smaller organisations to compete with this. For example, large charities are able to instruct commercial/corporate law firms to protect their logos and trademarks on intellectual property registers; and are able to exert competitive advantage that way.

And this was from Public Health England last year:

“The aim is to create a fully-integrated marketing programme which will help transform how the public thinks and feels about dementia, increase social connectedness and upskill society, so that people understand how they can help. It will encourage people to join the Dementia Friends programme, launched by Alzheimer’s Society, and invite businesses and communities to become dementia-friendly organisations.”

There’s been a whole plethora of cutbacks, which have thus far gone relatively unnoticed under the RADAR of the mainstream media. For example, it is reported that Essex County Council has just finalised plans to axe £200,000 funding for Mundy House, the only dementia day care centre in South Essex.

A number of people have told me in private that they cannot compete with the Alzheimer’s Society, but are increasingly having to find strategic partnerships with them otherwise they really would have no hope of competing in commissioning, even if they feel that their values and project are distinct.

The suboptimal nature of this sometimes bursts onto Twitter, where it can be difficult to have a highly managed media message. Tommy Whitelaw, well respected campaigner for carers’ voices, wished the Alzheimer’s Society to share his video, and these were some of the responses when the video wasn’t shared.

For all of twelve hours I had forgotten about this major problem, until this reminded me:

And a friend of mine on Facebook, who had been a longstanding supporter of the Alzheimer’s Society, and who himself/herself lives with dementia, complained last night that (s)he was very dillusioned about his/her views weren’t being listed to, amongst a plethora of other grievances about the current direction.

(S)he had just in fact read my survey about who were the winners and losers of the G8 Dementia survey according to about 90 of my followers on Twitter.

I think this situation is intolerable. I intend to write to the Alzheimer’s Disease International about my concerns, because we need a diversity and plurality in fundraising for all the dementias. I know that I already have the support of many who are equally concerned. All we need, I feel, is an open and transparent debate about what or who is calling the shots in English dementia policy.

And finally, this tweet has summed up my concerns. Thanks Bernadette.

The David and Goliath problems of the English Dementia Charities

Shibley Rahman 0 Comments

To be clear, I think the work of the Alzheimer’s Society is fantastic.

Since their restructuring, with the support of the Department of Health, they have done really important work in activities to do with dementia, not just Alzheimer’s disease.

Goliath (Hebrew: גָּלְיָת,) is a a giant Philistine warrior defeated by the young David, the future king of Israel, in the Bible’s Books of Samuel (1 Samuel 17).

Britain’s energy market is said to be dominated by the Big Six gas and electricity suppliers. All markets need competition to function effectively, with genuine choice for consumers.

Mentions of the Alzheimer’s Society are extensive.

This is for example Hazel Blears on 16 December 2013:

Blears Hansard

And here is the recruitment drive of Jeremy Hunt, four minutes in into his speech at the G8 Summit in December 2013:

It really has become a gigantuan operation for smaller charities to compete also in the social media:

David and Goliath tweet

Last week, it was announced that staff at Marks & Spencer, Argos, Homebase, Lloyds Bank and Lloyds Pharmacy will attend special sessions to help them understand the needs of customers with dementia and support them better.

The Alzheimer’s Society makes clear that the drive towards ‘Dementia Friends’ forms part of the six-month progress report on the Prime Minister’s Challenge on Dementia.

And it has been a success we can all be proud of. Norman McNamara is also soldiering on with his “Dementia Friendly” Torbay initiatives.

As a result of commitments from  various businesses regarding “Dementia Friends”, over 190,000 staff will become Dementia Friends – 60,000 from M&S, 70,000 from Lloyds Pharmacy, 50,000 from the Home Retail Group, which owns Argos and Homebase, and 11,500 from Lloyds Bank.

And yet ‘dementia friendship’ is a global initiative.

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.

An initiative from another charity, the Joseph Rowntreee Foundation,  “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.

There are various reasons why it is so easy for the Alzheimer’s Society to ‘clean up’ in the dementia charity market in England.

These are helpfully summarised in this summary slide, derived from the work of Michael Porter, Bishop William Lawrence University Professor of Business Management at the Harvard Business School, USA.

Porter

The Alzheimer’s Society have protected their visual mark for “Dementia Friends” on the trademark register for the IPO, as trademark UK00002640312. It is protected under various categories. This is across various classes, including ‘gymnastic and sporting articles’.

picture 3

It would have cost a lot for the Alzheimer’s Society plus the cost of instructing their lawyers, which are cited here as the big commercial/corporate law firm DLA Piper in Leeds. It’s simply impossible for smaller charities to compete resource-wise over this arm of intellectual property.

Currently, according to the UK trademark office, it costs £170 to apply to register a UK trade Mark if you apply on-line (£30 discount applies for on-line filings). This includes one class of goods or services. It is a further £50 for every other class you apply for.

And the pattern of news stories about dementia has now reached a consistent homogeneous pattern. For example, this story about Prunella Scales being diagnosed with dementia has a standard line with the word ‘suffering’ (“Fawlty Towers star Prunella Scales is suffering from dementia – but is determined not to let it stop her performing, her actor husband Timothy West has revealed.”)

But the language is not one of ‘living well with dementia’, consistent with other metaphors such as ‘timebomb’, ‘explosion’, ‘flood’ and ‘tide’.

And crucially it is very rare to have any other dementia charity named apart from the Alzheimer’s Society because of their strong brand presence inter alia.

There are other dementia charities in England, however.

BRACE is a registered charity that funds research into Alzheimer’s disease and other forms of dementia. Their role is to help medical science understand the causes of dementia, find ways of diagnosing it earlier and more accurately, and develop more effective treatments.

Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. They provide mental health nurses specialising in dementia care, called Admiral Nurses. And yet there have been cuts to the Admiral Nurses service.

On December 13th 2013, the Dementia Advocacy Network reported that they would be closing after 12 years of supporting independent advocates (this is the current link to their website.)

DAN closure

An article in the European Journal of Marketing (Vol. 29 No. 10, 1995, pp. 6-26), entitled “The market positioning of British medical charities” by Sally Ann Hibbert from Department of Marketing, University of Stirling, Stirling, Scotland, does throw some light on this issue.

Hibbert notes that clusters of people who donate to charities exist overall.

“Following on, the next highest scores are revealed for cancer and deaf charities, the former investing notably in education and research for cures, the latter focusing largely on treating the effects of deafness to improve the quality of life for people affected. This trend from preventive approaches to care services can be traced down through the charities on the vertical dimension to hospices, which are primarily carers.”

In the absence of a reliable marker through scans or psychology before symptoms, and in the absence of good treatments of dementia which stop the condition “in its tracks“, it was hard to make the pitch for molecular biology research and treatments. The industry was described as “ailing“.

That’s why it was so crucial to compare dementia to AIDS (see video above).

There is a legitimate concern that driving policy towards limited angles in this way could obscure the need for funding a grossly under-resourced community care services for dementia.

And living well with dementia is an appropriate policy plan for persons currently with dementia and their caregivers.

But specialist groups of people with dementia are beginning to emerge. For example, the “Dementia Action Alliance” is a non-profit dedicated to improving the quality of life for people living with the effects of dementia.

The DAA Carers Action (@DAACarers) also do incredible work .

Like the Government has been to provide an “equal playing field” for any qualified provider of NHS services, it is impossible to think that the playing field for raising money for dementia through charities and people such as the Purple Angels is anything like an “equal playing field”.

This is a major flaw in current policy, and could mean that there are some losers and some winners. This ‘zero sum gain’, simply, is not on I feel.

It is deeply concerning that “might is right”. We should try to work together.

‘Reasons to be cheerful’ part 4. Prof Sube Banerjee’s inaugural lecture in Brighton on living well with dementia.

Shibley Rahman 2 Comments

For me the talk was like a badly needed holiday. I joked with Kay there, a colleague of Lisa, that it felt like a (happy) wedding reception.

Unknown to me, the title of Prof Banerjee’s talk is an allusion to this famous track from 1979 (when I was five). It’s “Reasons to be cheerful (part 3)” by Ian Drury and the Blockheads.

The Inaugural Lecture – Professor Sube Banerjee (“Professor of Dementia”), ‘Dementia: Reasons to be cheerful’ was held on 26 February, 2014, 6:30 pm – 8:30 pm, at Chowen Lecture Theatre, Brighton and Sussex Medical School, Sussex Campus. BN1 9PX. Details are here on the BSMS website.

I found Prof Banerjee to be a very engaging, ‘natural’ speaker.

I arrived with hours to spare, like how the late Baroness Thatcher was alleged to have done in turning up for funerals.

Apprehensive

Brighton are very lucky to have him.

But his lecture was stellar – very humble, yet given with huge gravitas. Banerjee is one of the best lecturers of any academic rank in dementia I have ever seen in person.

Opening slide

Banerjee started off with a suitable ‘icebreaker’ joke – but the audience wasn’t at all nervous, as they all immediately warmed to him very much.

SUBE2 GENERAL

He is ‘quite a catch’. He is able to explain the complicated issues about English dementia policy in a way that is both accurate and engaging. Also, I have every confidence in his ability to attract further research funding for his various teaching and clinical initiatives in dementia for the future.

Most of all, I was particularly pleased as the narrative which he gave of English dementia policy, with regards to wellbeing, was not only accurate, but also achievable yet ambitious.

1979 was of course a big year.

SUBE1 1979

Prof Banerjee felt there were in fact many ‘reasons to be cheerful’, since Ian Drury’s remarkable track of 1979 (above), apparently issued on 20 July of that year.

Banerjee argued that the 1970s which had only given fruit to 209 papers, but things had improved ever since then.

It was the year of course Margaret Thatcher came to power on behalf of the Conservative Party.

1979 DEMENTIA

In contrast, there have already been thousands of papers in the 2000s so far.

Banerjee also argued that “what we know is more likely to be true” which is possibly also true. However, I immediately reminisced of the famous paper in Science in 1982, “The cholinergic hypothesis of geriatric memory dysfunction”. This paper, many feel, lay the groundwork for the development of cholinesterase inhibitors such as donepezil (“Aricept”, fewer than twenty years later.

It is definitely true that ‘we are better at delineating the different forms of dementia’.

I prefer to talk of the value of people with dementia, but Banerjee presented the usual patter about the economic costs of dementia. Such stats almost invariably make it onto formal grant applications to do with dementia, to set the scene of this particular societal challenge.

SUBE3 COSTS

I am of course a strong believer in this as my own PhD was in a new way to diagnose the behavioural variant of frontotemporal dementia. In this dementia, affecting mainly people in their 50s at onset, the behavioural and personality change noticed by friends and carers is quite marked. This is in contrast to a relative lack of memory of problems.

Not all dementias present with memory problems, and not all memory problems have a dementia as a root cause. I do happen to believe that this is still a major faultline in English dementia policy, which has repercussions of course for campaigns about ‘dementia awareness’.

A major drive in the national campaigns for England is targeted at destigmating persons with dementia, so that they are not subject to discrimination or prejudice.

The dementia friendship programmes have been particularly successful, and Banerjee correctly explained the global nature of the history of this initiative drive (from its “befriending” routes in Japan). Banerjee also gave an excellent example to do with language of dementia friendship in the elderly, which I had completely missed.

SUBE7 Japan friendships

Raising awareness of memory problems in dementia is though phenomenally important, as Alzheimer’s disease is currently thought to be the most prevalent form of dementia worldwide.

The prevalence of dementia may even have been falling in England in the last few decades to the success prevention of cardiovascular disease in primary care.

The interesting epidemiological question is whether this should have happened anyway. Anyway, it is certainly good news for the vascular dementias potentially.

That dementia is more than simply a global public health matter is self-evident.

I’m extremely happy Banerjee made reference to a document WHO/Alzheimers Disease International have given me permission to quote in my own book.

SUBE9 ADI

Banerjee presented a slide on the phenomenally successful public awareness campaign about memory.

SUBE12 Alz Soc campaign

Nonetheless, Banerjee did speak later passionately about the development of the Croydon memory services model for improving quality of life for persons with mild to moderate dementia.

In developing his narrative about ‘living well with dementia’, Banerjee acknowledged at the outset that the person is what matters at dementia. He specifically said it’s about what a person can do rather than what he cannot do, which is in keeping to my entire philosophy about living well with dementia.

And how do we know if what we’re doing is of any help? Banerjee has been instrumental in producing, with his research teams, acceptable and validated methods for measuring quality of life in dementia.

The DEMQOL work has been extremely helpful here, and I’m happy Banerjee made a point of signposting this interesting area of ongoing practice-oriented research work.

Banerjee of course did refer to “the usual suspects” – i.e. things you would have expected him to have spoken about, such as the National Dementia Strategy (2009) which he was instrumental in designing at the time: this strategy was called “Living well with dementia”.

SUBE4 National dementia strategy

“I’m showing you this slide BECAUSE I want YOU to realise it IS complicated”, mused Banerjee at the objectives of the current English dementia policy.

SUBE8 Dementia national strategy objectives

I asked Banerjee what he felt the appropriate ‘ingredients’ of the new strategy for dementia might be – how he would reconcile the balance between ‘cure’ and ‘care’ – “and of course, the answer is both”, he said to me wryly.

Banerjee acknowledged, which I was massively pleased about, the current ‘barriers to care’ in this jurisdiction (including the known issues about the “timely diagnosis of dementia”.

Clearly the provision at the acute end of dementia care is going to have to come under greater scrutiny.

SUBE11 Barriers to care

I increasingly have felt distinctly underwhelmed by the “medical model”, and in particular the repercussions of this medicalisation of dementia as to how grassroots supporters attempt to raise monies for dementia.

That certain antidepressants can have a lack of effect in dementia – Banerjee’s work – worries me.

That antipsychotics can have a dangerous and destructive effect for persons with dementia – also Banerjee’s work – also clearly worries me.

I am of course very proud that Prof Alistair Burns is currently reading my book focused on the interaction between the person and the environment in dementia.

Alistair Burns Shibley Rahman email

And of course I’m ecstatic that Lisa Rodrigues and Prof Sube Banerjee signed my book : a real honour for me.

book photo

I signed Lisa’s book which was most likely not as exciting for her! X

There was a great atmosphere afterwards: the little chocolate brownies were outstanding!

Being an antisocial bastard, I didn’t mingle.

Mingle

BUT I had a brilliant chat with Lucy Jane Marsters (@lucyjmarsters) who gave me a little bag of ‘Dementia is my business’ badges, very thoughtfully.

SUBE 13 Badges

We both spoke about Charmaine Hardy. Charmaine was missed (and was at home, devoted to G.)

I’ve always felt that Charmaine is a top member of our community.

This apparently is a ‘Delphinium’.

Delphinium

A reason not to be cheerful was leaving Brighton, for many personal reasons for me.

Upset to be leaving

Not even the Shard was a ‘reason to be cheerful’, particularly.

The Shard

But when I came back, I found out that ‘Living well with dementia’ is to be a core part of the new English dementia policy.

I have, of course, just published a whole book about it.

The photograph of the poppy was of course taken by Charmaine Hardy: I have such great feedback on that one poppy in particular!

Book cover

And what does the future hold?

Over to Prof Banerjee…

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

Is the drug industry “stopping dementia in its tracks” or in actual fact “running out of steam”?

Shibley Rahman 2 Comments

Sometimes you have to trust people to get on with things.

That’s why headlines saying fracking under homes could go ahead without permission don’t help.

And the reported assimilation of ‘caredata’ into the NHS information “borg”, without clear valid consent, is running into problems.

We cannot sign off every single decision about how each £ is spent in the ‘fight against dementia’ as it’s called. But the issues about care vs cure in dementia is running into the same problems with imbalance in information as fracking and care data. This threatens seriously to undermine trust in policy leaders supposedly working on behalf of us in tackling dementia.

The origins of the phrase “stopping dementia in its tracks” are obscure. Stopping something in its tracks may be somehow related to the phrase “running out of steam” for nineteenth century railway trains “running out of steam”, or coming to a sudden end when travelling. Is the drug industry “stopping dementia in its tracks” or in actual fact “running out of steam”?

To stop something in its tracks, nonetheless, is a popular metaphor, as it tags along with the combattive ‘war’ and ‘fight’ against dementia theme.

Tracks

While there’s been a need to focus on bringing value to lives with dementia, much of the fundraising has involved painfully pointing out the costs. A study conducted by RAND Corp. for the federal government earlier in 2013 found that nearly 15% of people ages 71 or older, or about 3.8 million people, now have dementia. Each case costs $41,000 to $56,000 a year, the study found. By comparison, direct expenses in the same year for heart disease were $102 billion. The study also tried to get a handle on the cost of informal care, which is often provided by family members in their homes. It pegged that cost at a range of $50 billion to $106 billion a year.

In a press release dated 24 January 2014, the Alzheimer’s Society and Alzheimer’s Drug Discovery Foundation (ADDF) are reported in their “Drug Discovery Programme” as offering up to $1.5 million to new research projects which could speed up developing treatments for Alzheimer’s disease (AD) and dementia. It is hoped that international collaboration could help make the hope of finding effective dementia treatments within the next ten years a reality. This call is open for research looking at all forms of dementia including Alzheimer’s disease. This international call for research proposals comes just weeks after the G8 Dementia Summit in London called for more global collaboration in dementia research in order to develop effective treatments by 2025.

It is described in this promotional video as “halting dementia in its tracks”. To “halt something in its tracks” literally means “stop (dead) in something tracks to suddenly it stop moving or doing something”.

A previous research grant from the Alzheimer’s Society looked at fruit flies. It was for Dr Onyinkan Sofola at University College London for £208,277. It started on October 2007 and was completed on September 2010. The researchers developed a fruit-fly model of Alzheimer’s disease where the flies accumulated amyloid, and investigated the involvement of “GSK-3″ on the behaviour of the flies. It was hoped that dialing down GSK-3 in healthy flies also did no harm suggesting this approach could work as a safe therapy for Alzheimer’s disease in humans.

Ahead of the G8 Dementia Summit in London last year (11 December 2013), Professor Simon Lovestone, Institute of Psychiatry, but soon to be at Oxford, set out what he hopes the Summit will achieve, the challenges of developing new therapies for dementia, and the real possibilities of one day preventing this devastating disease. The Summit was supposed to bring together Health Ministers from across the G8, the private sector and key international institutions to advance thinking on dementia research and identify opportunities for more international collaboration, with the ultimate aim of improving life and care for people with dementia and their families.

The G8dementia summit was described as a response thus by the BBC website:

BBC

Drugs currently used to treat Alzheimer’s Disease have limited therapeutic value and do not affect the main neuropathological hallmarks of the disease, i.e., senile plaques and neurofibrillar tangles. Senile plaques are mainly formed of beta-amyloid (Abeta), a 42-aminoacid peptide. Neurofibrillar tangles are composed of paired helical filaments of hyperphosphorylated tau protein.

New, potentially disease-modifying, therapeutic approaches are targeting Abeta and tau protein. Drugs directed against Abeta include active and passive immunisation, that have been found to accelerate Abeta clearance from the brain. The most developmentally advanced monoclonal antibody directly targeting Abeta is bapineuzumab, now being studied in a large Phase III clinical trial.

In the 1980s, the amyloid cascade hypothesis emerged, and it was the most long considered theory. It is based on the β-amyloid overproduction as responsible for the senile plaque formation and for the neurotoxicity that leads to the progressive neuronal death. However, controversial data about if β-amyloid is the cause of the disease or one of the main risk factors for AD are reported.

A further postulated theory at the end of the past century was the tau-based hypothesis. It is based on aberrant tau protein, a microtubule-associated protein that stabilizes the neuronal cytoskeleton, as the origin of Alzheimer’s pathology. There have been two phase IIb clinical trials with two different compounds, tideglusib and methylene blue. Both compounds have reported some positive results in the increase of cognitive level of AD patients after the first treatments on phase IIa clinical trials.

In the meanwhile, intensive research on the physiology and pathology of tau protein leads to the discovery of two kinases responsible for its posttranslational aberrant modifications. After cloning, these kinases were identified more than ten years ago, including the now well-known glycogen synthase kinase 3 (GSK-3).

The excitement of this “GSK3 hypothesis of Alzheimer’s disease” is described here in this paper with Professor Simon Lovestone as last author.

But all may not be as well as it first appears.

GSK-3 inhibition may be associated with significant mechanism-based toxicities, potentially ranging from hypoglycemia to promoting tumour growth. But encouragingly, at therapeutic doses, lithium is estimated to inhibit approximately a 25% of total GSK-3 activity, and this inhibition degree has not been associated with hypoglycemia, increased levels of tumorigenesis, or deaths from cancer. Currently it’s hoped, in pathological conditions, the GSK-3 inhibitor would be able to decrease the upregulation of the enzyme and, in the case that this treatment would slow down the GSK-3 physiological levels, other compensatory mechanisms of action would play the restorative function.

Therapeutic approaches directed against tau protein include inhibitors of glycogen synthase kinase- 3 (GSK-3), the enzyme responsible for tau phosphorylation and tau protein aggregation inhibitors. NP-12, a promising GSK-3 inhibitor, is being tested in a Phase II study, and methylthioninium chloride, a tau protein aggregation inhibitor, has given initial encouraging results in a 50-week study.  Fingers crossed.

Another important challenge for a GSK-3 inhibitor as an AD treatment is its specific brain distribution. The drug needs to cross the blood-brain barrier to exert its action in the regulation of exacerbated GSK-3 brain levels. Usually this is not an easy task for any kind of drug, moreover when oral bioavailability is the preferred administration route for chronic dementia treatment.

And once it gets into the brain, it has to to go to the right parts where GSK-3 needs to be targeted, not absolutely everywhere, it can be argued.

Nonetheless, the enthusiasm about the approach of drug treatments is described on Prof Simon Lovestone’s page for the Alzheimer’s Society.

However, Professor Lovestone’s research group has run into problems when trying to demonstrate their findings in mice, an important step in the research process. The problem is that mice do not naturally develop Alzheimer’s disease, and it is even difficult to experimentally cause Alzheimer’s disease in mice.

We may soon have to face up to the concept, with the current NHS having to do ‘more with less’, and ‘with no money left’, ‘we can’t go on like this’. It would be incredibly wonderful if you could give an individual a medication which could literally ‘stop dementia in its tracks’. But even note the scientific research above is for Alzheimer’s disease, one of the hundred causes of dementia, albeit the most common one. Or we may have to stop this relentless spend on finding the “magic bullet” in its tracks, and think about practical ways of enhancing the quality of life or wellbeing of those currently living with dementia. Nobody reasonable wishes to snuff out hope for prevention or cure of the dementias, but, for a moral debate, the facts have to be on the table and clear. Every money we spend on investigating magic bullets which don’t work could have been spent in giving a person living with dementia adequate signage for his environment, or a ‘memory phone’ with photographs of common contacts. But the drug industry, and the people who work with them, never wish to admit they’re running out of steam.

Dementia friendly communities: corporates not behaving badly, or clever marketing?

Shibley Rahman 2 Comments

communities

There is of course an element of both. “Dementia friendly communities” could be an example of corporates not behaving badly, to create a competitive advantage for themselves; or it could be quite nifty marketing.

Corporates not behaving badly, officially known as “corporate social responsibility” is a form of corporate self-regulation integrated into a business model. CSR policy functions as a built-in, self-regulating mechanism whereby a business monitors and ensures its active compliance with the spirit of the law, ethical standards, and international norms.  It’s in keeping with the idea of corporates like citizens just like the rest of us, like trade unions, for example, all co-existing “in the public good“.  CSR is a process with the aim to embrace responsibility for the company’s actions and encourage a positive impact through its activities on the environment, consumers, employees, communities, stakeholders and all other members of the public sphere who may also be considered as stakeholders. Given the talk of “pandemic” and “time bomb”, it’s not a huge surprise corporates will wish to be in on the action. Some were out in force last week at the #G8summit. So that’s the answer to the question posed by Vivienne Parry in the session with NIKE and BT: “What are they doing here”?

Companies the world over, whether they are involved in consumer sales, B2B, intermediaries, charities or NGOs, all recognise the importance of marketing. Marketing tends to be something which many people feel they can have a dabble at, but of course charities have highly skilled people doing it just like any other corporate. ‘Strategic marketing‘ has been defined by David Aaker as a process that can allow an organisation to concentrate its resources on the optimal opportunities with the goals of increasing sales and achieving a sustainable competitive advantage. Or surplus, if you’re in the third sector. Talk to any smaller charity going out of action, like Dementia Advocacy Network, and you’ll see cut-throat it can be.

The highly visible “dementia friendly communities” programme of the Alzheimer’s Society focuses on improving the inclusion and quality of life of people with dementia, as described here.  The Alzheimer’s Society’s five year strategy includes a key ambition to work with people affected by dementia and key partners to define and develop dementia friendly communities.  In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives. And it’s also great publicity for corporates which sign up. The Prime Minister’s challenge on dementia also includes an ambition to create communities that are working to help people live well with dementia, and which politician doesn’t seek to be re-elected?

However, the concept is actually not at all new.

The “York Dementia Without Walls project” from the Joseph  Rowntree Foundation looked into what’s needed to make York a good place to live for people with dementia and their carers. It’s argued fundamentally 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. Working with people with dementia, the research team investigated how local resources can be harnessed to this end, provided there is enough awareness. It was great work.

They were not alone. The RSA also developed their “connected communities” project. Connected Communities is a research programme that explores ‘social network’ approaches to social and economic challenges and opportunities. They concentrated on understanding, mapping 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.

This RSA group perceived the answer was to be found in “networks” because networks have dynamic qualities through which behaviour, emotional states, conditions, and influence spread and cluster, often in quite specific ways.

The UK indeed is not alone.  There’s been a growing number of cities and communities worldwide are striving to better meet the needs of their older residents.

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.

And these initiatives have had great success, which is to be applauded. In October 2013, it was announced that a landmark guide for banks and insurers to help improve the everyday lives of people affected by dementia was being launched by Lloyds Banking Group and Alzheimer’s Society. The ‘Dementia-friendly financial services charter‘ was designed to help financial services organisations recognise, understand and respond to the needs of customers living with dementia and their carers. Financial abuse can be a massive source of worry for carers of people living with dementia, so it was wonderful Lloyds Bank participated in this innovation.

So why should corporates prefer to go with the Alzheimer’s Society? It is quite possible that this is due to the strength of the brand of that society.

A parallel can be seen in property law.

A landlord would obviously prefer to know that his tenant is solvent and reputable and consequently more likely to perform all leasehold covenants.

Property professionals often refer to covenant strength and try to determine whether a proposed tenant is a “good covenant”. For investors the covenant strength of the tenant is an extremely important factor. If a landlord has tenants with good covenant strength, the property will be more attractive to potential buyers and its value will be likely to go up.

The parallel is the power of the brand of a charity – its “pulling power”.

Businesses and charities put a lot of time into their outward reputation, in the hope of attracting more inward business. Whilst Google hits are not per se a sign of popularity and goodwill, because for example a Google ranking might depend on the number and quality of pages which link to that webpage, the ranking of a phrase can be a good indication of the power of a brand.

Here it is quite interesting that the Alzheimer’s Society puts up a good showing for a search of ‘dementia friendly communities’. A possible reason for the society’s success here is to find in the last entry of this extract: the powerful strategic alliance it has with the Department of Health, who will clearly want this project to succeed.

Google search

Despite various third sector and corporate entities competing with each other, there has been remarkably little scientific peer-reviewed published evidence on “dementia friendly communities”. Here for example is the output from the ‘Medline’ database encompassing a huge collection of medical journals. This search only returned two pieces, where the abstract was not even available. Many, therefore, will have agreed with Sir Mark Walport, the Chief Scientific Officer, to query publicly at #G8dementia what the precise evidence base for the “dementia friendly community” is currently.

Medline search

Notably, the prestigious Stirling group (DSDC) aired their concerns here:

““Dementia-friendly” has become part of the language of strategic planning in the public and third sectors, since the launch of the Prime Minister’s Challenge on Dementia in England in 2012 included the creation of dementia-friendly communities as one of its three main objectives. However, its exact meaning is inconsistent.

Being “dementia-friendly” has also become an aspiration for specific organisations, for facilities and buildings and for services – sometimes as part of a wider commitment, sometimes stand-alone.

DSDC does not believe there is a single model of “dementia-friendly”, or any need for one.  But it does advocate for objective measures of what is being promoted as “dementia-friendly” to ensure it is not just a popular phrase used to cover shallow or cosmetic change. In terms of what we do ourselves, DSDC aims to help any group or community work out what can be achieved on a sustainable basis given available local resources.”

Piercy and Lane (2009) from the Warwick Business School really elegantly reviewed the relationship between corporate social responsibility and strategic marketing in their article, “Corporate social responsibility: impacts on strategic marketing and customer value” [The Marketing Review, 2009, Vol. 9, No. 4, pp. 335-360].

The initiative of Lloyds embracing “dementia friendly communities” can be at once understood through Piercy and Lane’s discussion of the notion of “ethical consumerism“”

“Commentators on branding suggest that ethical consumption is one of the most significant issues in modern markets. The conclusion is that ethical and environmental questions are being posed by growing numbers of consumers, but they are not always overly impressed by companies’ responses. It is also unclear how robust ethical consumerism will be in the face of other pressures – sales of organic foods fell nearly 20% in the UK in 2008, as consumers reverted to cheaper alternatives when economic conditions worsened. Nonetheless, the impact of “ethical consumerism” is large and of escalating significance.”

A particular banks, despite being in a relatively crowded market (and hence oligopolistic), particularly need to demonstrate why it’s better than the rest, and ethical consumerism has been particularly important for this in recent times, possibly in a way accelerated by the global financial crashes.

Also such initiatives are particularly attractive to investors, viz:

“There are growing signs that many corporate boards of directors are under shareholder pressure to adopt more acceptable environmental policies and keep a closer watch on environmental issues, reflecting investor concerns about global warming and shortages of natural resources. The attitude of investors toward CSR initiatives may be positive or negative. For example, it may be from an investor perspective the case for sustainability is essentially a business case – initiatives are not about “saving the planet”, but about cutting waste, reducing costs and becoming more efficient. In 2006, Google launched a strategy to switch to renewable energy – while this reflects the personal beliefs of the founders of the business, it is also true that Google is a massive user of electricity and renewable energy provides a way to cut costs. Nonetheless, when Google announced its renewable energy strategy, one leading New York stock analyst downgraded the company, despite clear indications that the initiative would cut costs – his view was that the company was no longer focusing on its real priorities.”

This criticism clearly would not apply to dementia charities, where inclusion of disabled members of society would be invariably an aim of any reasonable dementia charity. But the point holds: that the ‘market’ is sensitive to a company’s ethical credentials these days. For example, a dementia charity which solely concentrated on genomic ‘big data’ might not have as much competitive advantage with the general public. And the ‘dementia friendly community’ is an effective way of returning value to members of the general public, in the absence currently of disease-modifying drugs or cures for Alzheimer’s disease and the other two hundred causes (at least) of a dementia.

It is not of course accidental that Andrea Ponti from JP Morgan was there at #G8dementia. Corporates behaving well is big business. It would be easy to dismiss what they can bring to the table, that is somehow raise the profile of dementia. The tragedy of course would be if diversion of resources acted to the detriment of actual patient-centred care so desperately needed at the moment.

The G8 Dementia Summit cannot just be about “Pharma-friendly communities”, but must be about people

Shibley Rahman 3 Comments

A ‘cure for dementia’ would be wonderful.

The phrase is, of course, as meaningless as a ‘cure for cancer’, but equally trips off the tongue for corporate fundraising purposes. Like there are many different forms of cancer, like breast, ovary or bone, there are many different forms of dementia, like Alzheimer’s, frontotemporal or HIV.

It’s clear not everyone is going to be a winner from the G8 Dementia Summit promotional package. The write-ups of the dementia research strategy have included ‘the usual suspects’ from “Pharma-friendly communities”, with a token sop to research for wellbeing.

The G8 Dementia Summit is an extremely good way of promoting dementia as a worthy public health issue. Many passionate campaigners will indeed take to the stage to explain, often in very personal terms, why dementia is an incredibly important issue for them. It has become extraordinarily difficult not to know somebody who, in one way or another, is touched by dementia.

The complex nature of dementia has forced policy makers and national governments to invest the financial resources available in three main areas: first, medical research to find a cure for the disease or at least ways to prevent it; second, pharmacological care; and finally, support for caregivers, such as information, training, psychological assistance, etc. Arguably though, none of the three areas, however, have the ‘real’ person at the centre of their interest.

There is also now way that the media can get away with their marginalising of carers for a ‘cure’. Carers face considerable pressures, as they are forced to understand at shotgun notice the biologicial, personal, legal and financial consequences of the dementia. Apart of anything else, many carers, often employed by large private companies, are paid less than a living wage on a ‘zero-hour contract’. Unsurprisingly, how we prioritise the value of care rather than the dividend of a shareholder in a large pharmaceutical company is an important debate to be had.

The cultural stereotype of dementia across various countries is indeed noteworthy. The picture of dementia emerging from these socially-constructed discourses is, at worst, that of a body without a mind, of a hollow shell: that is, a picture in which the dementia “obliterates” the subject, and calls for constant care either by the family members  – informal caregivers – or by formal caregivers, at home or in nursing home facilities. This is a powerful pitch by dementia charities, but stigmatises massively those individuals wishing to lead normal lives with more mild forms of dementia.

The stigma is in fact deeply entrenched. The Merriam-Webster Online Dictionary of 2004 defines dementia first as “mental deterioration of organic or functional origin.” Although a generalization [sic], it seems innocuous and close to what is intended by physicians. However, on further reading almost every dictionary refers to its derivation from Latin, meaning madness or out of one’s mind. This debate has, nonetheless, recently hit a new level with the discussion of whether the word ‘dementia’ should be dropped altogether.

‘Minor or major neurocognitive deficits’ as an alternative term has its supporters and critics.

Norman McNamara, well known campaigner for dementia awareness, has even asked on his Facebook page whether dementia “should come under a mental health banner” (reported here).

Kitwood produced a ‘sea change’ in thinking for placing the individual with dementia at the centre of all discourses about it. Within this social-psychological approach to dementia of the Alzheimer type, Kitwood ́’s concept of personhood emerges. Personhood is defined as ‘a status or standing bestowed upon one human being, by others, in the context of social relationship and social being. It implies recognition, respect and trust’.

Dementia is not an unitary construct. It does not only affect the old. And yet ‘messaging’ of dementia consistently has an unpleasant streak of ageism. According to Richard Titmuss, “Viewed historically, it is difficult to understand why the gradual emergence in Britain of a more balanced age structure should be regarded as a “problem of ageing”.”

Ageist stereotypes in Western culture, from the classical period to the present, have gained strength in a social environment in which ageing is perceived as a problem and portrayed negatively. The general connotations of being old – ill, disabled, with failed memory, senile, sad, lonely, grouchy, sexless, boring, lacking vitality, in decline, unable to learn and unproductive. Stereotypes are powerful, as they spread through cultural productions, media, and policies, hence perpetuating them in the social structure, and empowering collective ideologies by marginalising those belonging to the stereotyped group.

That the G8 dementia summit should have such a naked Pharma bent is of course no big surprise. Sales of the five dementia drugs were just shy of $3 billion in 2007. Donepezil and memantine accounted
for 85% of those sales; tacrine had fallen out of use because of its high adverse effect profile. The memory-boosting drugs, whilst expensive, are generally thought to have very modest effects; and there is no evidence in humans that they slow the rate of progression thus far.

However, the effects of medical labels are always mixed.

Medical labels may operate as instruments of empowerment and social recognition that allow individuals to legitimise their grievances in their own and others’ eyes; they may also operate as instruments of professional expansion, social control, and corporate dominance, serving to pathologise normal functioning, unduly reinforce gender norms.

The danger, observed by some, is that the work of medical researchers has transformed what for years was seen as a rare medical condition into a “major killer” and threat to the wellbeing of predominantly the elderly and their caregivers.

This transformation was critical to the consolidation of a movement born from the grievances of sufferers of a range of cognitive, behavioral and personality impairments and their caretakers, because it gave these impair- ments a biomedical definition, thus creating an “entity” deemed modifiable through the application of biomedical science.

The experience of the USA is interesting. As dementia advocacy grew, so did coincidentally the small government ideology of the Reagan years. (A similar phenomenon is happening here with the UK Coalition administration, though perhaps a ‘small state’ should be more accurately described as an ‘outsourced state’). The Omnibus Budget Reconciliation Act of 1980 was the legislative vehicle for the implementation of this ideology, which reduced social services at the same time that it appeared to respond to the “crisis” and public grievances. The Act gave broad authority to the states to restrict Medicaid program eligibility, reduce the number and type of covered services, and limit payments to hospitals.

These reductions in federal support for health and social services occurred at a time when states and cities were experiencing the combined effects of a lagging economy and of various spending limitations imposed by the passage of tax-limiting measures such as Proposition 13 in California and Proposition 2 1⁄2 in Massachusetts.

Yet another element leading to the triumph of “cure” over “care” was a largely idealised notion of “nuclear family” family functions, which grained ground during this time of political and cultural conservatism, and legitimised an inequitable societal workload falling on women in the provision of long-term care.

Clearly, caregiving, a resource-intensive activity falling predominately on women, is neither “budgetable” nor appreciated at the policy level. So again, rather paradoxically, not only did the heart-rending testimony of caregivers to Congressional committees advocating for more support fail to lead to more formal services and relief of women’s workload, it also legitimised the biomedical framework that deviates public support away from caregivers, as it feeds the hope for effective treatments or a cure for dementia that presumably will derail the “explosive” future costs of caring.

Ironically, here in the UK, the website of the “Dementia Advocacy Network” gets taken down at the end of next month. It is in fact the last week of its hardworking manager, Jan Kendall. This Network was invaluable in offering non-statutory guidance for advocacy, in keeping with statement 9 of the recently published NICE quality standard. This statement on independent advocacy.

DAN

Jan Kendall’s experience is sadly not unique. There has been a starvation of funds as many entities in the third sector have found it difficult to cope. The situation in the charity sector is remarkably similar to how City firms have experienced maintained revenues, while high street law firms have been forced to shut down.

The narrative from “Pharma-friendly communities” in the media threatens to drown out what is actually happening on the ground. It is recently reported that budget cuts forced a record 220,000 dementia sufferers to turn to hospital A&E units for help last year.

There is, of course, nothing to stop Big Pharma or large dementia charities to act as good ‘corporate citizens’ , in keeping with the views of Professor Michael Porter at Harvard Business School, in helping to fund frontline care.

But the danger is that this ‘drive for a cure’ represents yet another attack on the running of a universal healthcare system, which should be in principle funded through a fair and equitable general taxation.

Julian Tudor-Hart unsurprisingly puts it perfectly.

“Volume, costs and content of medical care depend on demand, which depends on professional and public expectations. The UK National Health Service (NHS) removed price barriers to access, and depressed expectations became an important factor in cost control. In USA, professional control of care business inflated expectations, and consequent costs. Managed care in the NHS failed to rationalise care because managers seem even less trustworthy than clinicians as arbiters of rational expectations in contexts of permanent underfunding. Development of rational expectations depends on restored trust, mutual and managerial respect for the expertise of both clinicians and patients, and transcendence of the provider-consumer model for value production in medical care.”

This is, contrast, is EXACTLY what person-centred care should be aiming to achieve: allowing people to live well with dementia. The ability of drugs to help people to live well with dementia currently is relatively poor. But Beth’s experience should indeed be about inspiring people who care about dementia. Thanks also enormously to the Department of Health for their efforts in this direction.

Enormous thanks to Dr John Rumbold, Dr Jonathon Tomlinson and Prof Julia Simard for indirect help with this article.

The #G8Dementia Summit – a curious lack of a person-centred approach in the research strategy

Shibley Rahman 3 Comments

Trade fair for blog

David Cameron should be given credit for making ‘dementia’ the topic for discussion of the G8 on 11th December 2013. But the event runs the risk of being a trade fair for the pharmaceutical industry, becoming increasingly desperate to prove their worth in dementia and society.

However, it is widely acknowledged that cholinesterase inhibitors, drugs that boost levels of acetylcholine in the brain to improve attention and memory, have a modest effect if that in the majority of patients with early dementia of the Alzheimer type (‘dementia of the Alzheimer type’). There is no robust evidence that they slow down disease progression in humans from human studies of patients.

Many senior academic experts feel conversely that there has been insufficient attention put into interventions that actually do help people to live well with DAT. Such interventions include improving the design of the home, design of the built environment (including signage and pavements), non-statutory advocacy, dementia-friendly communities, assistive technology and ambient living innovations.

On Wednesday 4th December 2013, a ‘research summit’ was held for the press for “research into dementia”. The main focus of this research summit was how can one best predict who will get dementia or when, do we even know what causes dementia yet, what “cures” are there in the pipeline, what can be done to prevent dementia, what obstacles are pharmacological researchers facing, does Pharma have sufficient resources, and what needs to be done to make the Dementia Summit a success.

The focus of this ‘summit’ into ‘research into dementia’ was not living well with dementia, which is a gobsmacking tragedy for all those involved in promoting living well with dementia.

What is overwhelmingly absent is a ‘person centred approach’ which has been a major force for good in contemporary dementia care in England.

The panel members, according to the brief, were: Dr Doug Brown, Director of Research and Development, Alzheimer’s Society; Prof Nick Fox, Professor of Neurology, MRC Senior Clinical Fellow, Institute of Neurology, University College London; Prof Simon Lovestone, Professor of Old Age Psychiatry, Director of NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Trust and Institute of Psychiatry, King’s College London and Lead for the Translational Research Collaboration in Dementia (a network of 6 centres established by the NIHR); Prof Peter Passmore, Professor of Old Age Psychiatry, Queen’s College Belfast and Lead for Dementia for The British Geriatrics Society; and Dr Eric Karran, Director of Research, Alzheimer’s Research UK.

To show how little there was on wellbeing, and discussing innovative ways to allow people to live well with dementia, here’s the official write up from the BMJ this week:

“Nick Fox, professor of neurology and a Medical Research Council senior clinical fellow at the Institute of Neurology at University College London, said, “We should be asking the G8 collectively to double the research spending on dementia within five years.

“And I think there is a lovely equitable way of looking at this. We ask the G8 countries to commit 1% of their dementia costs to add another doubling of research spending within 10 years.”

Brown said the aims of the research were to enable more accurate and timely diagnosis of dementia; to create disease modifying treatment to try to stop, slow, or reverse the condition; and to find drugs to treat the symptoms. Most importantly, he said, researchers needed to understand how dementia developed to enable the risk to be reduced and onset of dementia to be prevented or at the very least delayed. “If we could delay the onset by five years we could probably cut the numbers of [people with] dementia in half,” he said.

Fox said that past trials of treatments had concentrated on people with symptoms of the disease, which was “like trialling chemotherapy when people are already in a hospice.” Now, he said, treatments were beginning to be tested in people who were at higher risk of dementia because they had a family history or other genetic risk factors or because scans had shown early features of the disease.

Scans and other techniques could then be used to track the effects of treatment before symptoms appeared. “Only if we can identify people where we can see whether our therapies are having an effect will we ever make progress,” Fox said.

Peter Passmore, professor of old age psychiatry at Queen’s College Belfast and the British Geriatrics Society’s lead on dementia, said that as more was known about the mechanism of dementia, researchers were looking at drugs licensed for other conditions that might impinge on those mechanisms. “That’s cheaper drug development: those drugs are off patent,” he said.”

Many thanks to @sam4wong for sharing this with us on Twitter this morning.

Sadly, this representation of research for #G8dementia has taken on more of an appearance of a corporate international trade fair, which is a crying shame. This is, ironically, in the week that the World Trade Organization has apparently agreed its first-ever global deal aimed at boosting commerce.

A trade fair (trade show, trade exhibition or expo) is an exhibition organised so that companies in a specific industry can showcase and demonstrate their latest products, service, study activities of rivals and examine recent market trends and opportunities. In contrast to consumer fairs, only some trade fairs are open to the public, while others can only be attended by company representatives (members of the trade, e.g. professionals) and members of the press, therefore trade shows are classified as either “Public” or “Trade Only”. However, the G8 next week would be at considerable risk of being hijacked by market forces, if it were not for the valiant efforts of the Department of Health and people who have devoted their lives to raising dementia awareness too. Trade fairs are helpful for marketing of products to a wider audience.

James Murray-White (@sky_larking) is a film-maker, and campaigns perennially for raising dementia awareness. James announced yesterday that he was proud to be part of a central network of dementia ‘activists’ on Twitter, but had just reported on the same media network that he had recently been refused ‘press accreditation’ for #G8dementia.

Earlier this year, filmmakers and scientists came together at this event to increase the public understanding of dementia. This event comprised series of short films about dementia, curated by Murray-White, will precede a discussion with researchers from the University of Bristol and other institutions supported by @AlzheimersBRACE, a local charity that funds research into Alzheimer’s disease and other forms of dementia. Panel speakers included: Professor Seth Love (Professor of Neuropathology); Laura Palmer (South West Dementia Brain Bank Manager); James Murray-White (filmmaker).

However, all is not lost, by any means.  Beth Britton (@BethyB1886) will be participating in a short film for #G8dementia. Prof Alistair Burns (@ABurns1907), the Clinical Lead for Dementia in England, has written of Britton:

“Beth Britton has been a breath of fresh air in the discussions and debates around dementia. She brings a clarity of thought and originality of ideas which I have always found very refreshing and helpful when considerations and discussions of the importance of people with dementia and their carers are concerned. She has a unique writing style and a gifted ability to convey ideas and experiences”

Beth is one of the U.K.’s leading campaigners on dementia. Her experience of supporting her father, who was living with dementia, and her professional background, give her unparalleled insight into effective ways of campaigning for change, it is widely felt.

There are people who are simply interested in individuals with people  – the person not the drug. For example, Lucy Jane Masters (@lucyjmasters) is a dementia nurse specialist, advocating for change, an educator, and primarily passionate about that person with dementia and those who care for him or her.

Alistair has for long time emphasised the importance of “a timely diagnosis”, rather than an “early diagnosis”. This is very much in keeping with the notion that the potential diagnosis should be offered at a time personally appropriate to any particular individual. Alistair also believes, in his rôle as part of NHS England, that there should be a reasonable level of “post-diagnosis support”. Academics generally agree that the tenure of Alistair as the National Lead for Dementia in England has been a very successful experience for all involved.

There are few people as inspirational too as Norman McNamara, who has campaigned tirelessly to dissolve the stigma which can surround dementia. He can be very easily found on Twitter for example (@NormanMcNamara). McNamara has written poignantly about his own personal experiences of ‘living with dementia’.

Sally (@nursemaiden) was a senior nurse, but likewise now promotes heavily wellbeing in dementia, with her father with dementia of the Alzheimer type having passed away on 1st September 2012.

And it truly is an international ‘effort': Kate Swaffer (@KateSwaffer) in Australia – who has just met up with Gill Phillips who advocates ‘paths to personalisation’, has written brilliantly about her experiences of the dementia diagnosis.

Indeed, it would not be hyperbolic to say that many people have given up much free time into the world of the dementias, as a vocation. Lee (@dragonmisery) has produced an incredible information provision website for carers of people with dementia, and this has advanced the policy plank promoting choice and control in wellbeing.

Twitter has been particularly successful at giving people a voice at last. Charmaine Hardy (@charbhardy) is one of the most prominent members of this very close community. Her profile reveals that her husband, whom she adores, has a rare dementia known as primary progressive aphasia. Anyone following Charmaine knows exactly the emotional intensity of someone caring for somebody with dementia.

Likewise, Thomas Whitelaw (@TommyNTour) has literally been ‘on tour’ talking with amazing authentic emotion, affectionately, about his mother, Joan Whitelaw, who had been living with dementia.

So why such a focus on pharmacology?

Why so little on ‘person centred care’?

This glaring omission of person centred care in #G8 dementia apart from representations below is utterly embarrassing and humilating for the thousands of researchers and practitioners who work in this area. @MrDarrenGormley‘s award-winning blog is a most useful introduction to this area.

And, although deeply enmeshed in the English health policy which has sometimes been far from controversy, the efforts of the Department of Health itself have been most impressive.

Anna Hepburn (@AnnaHepburnDH) is Digital Communications Manager for Social Care at the Department of Health. Anna is well known to be genuinely interested in the views of people living with dementia, and those closest to them.

Anna remarked recently,

“When people with dementia and their partners were invited to the Department of Health recently, there was one simple statement that stuck in my mind: “We are still people”. It came as a bit of a shock coming from one of the articulate and funny people gathered round the table. But it says it all about the misconceptions and stigma surrounding dementia.”

Anna Hepburn continued,

“On 18 November, I had the privilege of meeting more people with dementia, as well as current and former carers of people with dementia, who came to London to make short films to show at the G8 dementia summit. This is so we can bring their voices – and the reality of dementia – into the room on 11 December.”

But as a result of the research summit and other efforts from the media and select researchers, the headlines have been rather sensational and sadly all too predictable, viz:

“Unprecedented breakthrough in the hunt for a dementia drug within ‘five years'” (Independent)

“G8 ministers warned to prepare for global dementia ‘time bomb’” (Times)

“Monthly injection to prevent Alzheimer’s in five years” (Telegraph)

“Jab to slow Alzheimer’s ‘is just five years away': Monthly treatment could be given a decade before symptoms” (Daily Mail)

“Dementia cases ‘set to treble worldwide’ by 2050” (BBC)

The last one has been the most difficult for real experts  in the research community with real knowledge of the problems facing international research.

On the other hand, Mr Jeremy Hughes, chief executive of the UK’s Alzheimer’s Society, according to that final BBC report cited above, said: “Dementia is fast becoming the biggest health and social care challenge of this generation.”

“We must tackle dementia now, for those currently living with the condition across the world and for those millions who will develop dementia in the future.”

There has been much media interest in improving diagnosis rates in England, driven more by the dementia charities than public health physicians or GPs.  Whilst undoubtedly a ‘cure’ for dementia would be wonderful, it is rarely reported that dementia rates are in fact considered to be dropping.  Medical doctors such as Dr Peter Gordon (@PeterDLROW; a NHS Consultant Psychiatrist) and Dr Martin Brunet (@DocMartin68; a NHS General Practitioner) have been invaluable as “thought leaders” in forging ahead with an evidence-based approach to this complex issue, cutting through the media garb and spin (and promotional copy).

Very recently in the prestigious New England Journal of Medicine, it was reported that, “Although demographics will drive an increase in the number of dementia cases, recent reports — generally based on population-based community studies or survey data — point to declining age-specific prevalence or incidence rates among people born later in the first half of the 20th century”

You can follow live digital coverage of the G8 dementia summit on the Dementia Challenge site on 11 December 2013. Well done to all those involved, particularly the grassroots campaigners, Anna Hepburn, and the Department of Health!

I am taking my 11000 Twitter followers all the way in promoting wellbeing in dementia

Shibley Rahman 2 Comments

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I am taking my 11000 followers on Twitter (@legalaware) all the way in engagement over the G8 ‘dementia summit’.

Anna Hepburn at the Department of Health will be spearheading implementation of its own digital strategy on 11 December 2013, which I am looking forward to enormously (here).

A friend of mine is a prominent campaigner for dementia. He lives with a type of dementia which is quite common in a certain age group.

I was aghast when he said this week he had attended a clinical commissioning group meeting, but had faced stigmatising language about dementia. The leader of that meeting had referred to someone having ‘a bit of dementia’.  My friend was not impressed, but politely wrote to him afterwards. The leader replied with dignity.

But this for me epitomises the uphill battle those of us who genuinely care about dementia really face.

My baptism of fire into the world of dementia is when I did cognitive assessments in Cambridge of patients with frontal dementia, for Professor John Hodges who was chair of behavioural neurology at the time.

Since then, and bear in mind that this is more than ten years ago, I have firmly believed that there is no more important voice than the person with dementia.

Also, it has become apparent to me that there are many in the caring professions, including of course carers who confront challenges to their own health. It seems that they also are expected to tiptoe with effortless ease through the maze of the law and finance, as well as information about the condition itself.

Sure, the drive for a ‘cure’ and ‘better treatments’ for dementia  as a ‘key priority’ from the Alzheimer’s Society (their press release on the ‘G8 summit’) is a worthy and commendable one. However, individuals with dementia and the people who are close to them need to have realistic expectations about what the drugs can do – and what they can’t do.

There are invariably going to be pressures on English policy in dementia policy, and dementia itself has to compete with a finite pot of resources compared to other very important long term conditions (such as chronic obstructive airways disease).

In the absence of a magic cure for the more prevalent types of dementia, such as dementia of Alzheimer type, I believe a huge amount of effort morally must be put into improving the quality of life of those loved ones with dementia.

I particularly admire Beth Britton for her work in dementia. Beth on her blog produces a clear first-hand precious witness of her father, whose journey of vascular dementia was for around 19 years. I had the good fortune to meet Beth, Gill Phillips (the force behind the ‘Whose Shoes‘ tool) and Kate Swaffer recently when Kate was visiting from Oz. Kate’s blog on personal experiences of living with dementia is a candid tour de force. Both Beth and Kate have reasonable expectations from society of its reaction to people living with dementia. Their voices have to be heard clearly through the noise of the system.

These are examples of genuine people, who care. Their passion for explaining the importance of the person is authentic.  It’s real.

I am nearly 40, and I realised a few years ago that anything can happen to anybody at any time. This crisis of insight occurred precisely at the moment  when I woke up from a six week coma in a London NHS Trust, as I had contracted meningitis. It’s how I became physically disabled.

When I studied medicine for all of six years at Cambridge, and did my postgraduate studies in London,  I had never heard of Tom Kitwood. Kitwood was, however, remarkable for revolutionising the way we think about dementia.

Medics are transfixed on their medical model, but Kitwood put the person in pole position in dementia care. This is extremely potent, corroborated in subsequent policy from SCIE on personalisation and person-centred care. I have indeed devoted a whole chapter to it in my book ‘Living well with dementia’.

Policy makers owe a debt they can never actually repay from people with dementia (such as Norman McNamara) or people who have come up close with dementia (such as Tommy Whitelaw and his late Mum Joan, whom Tom clearly adored).

In a closely-knit group of #dementiachallengers,  @charbhardy is also “first amongst equals”!  As Charmaine’s Twitter profile says, she is a carer to her husband with ‘PPA’.

PPA is primary progressive aphasia, a rare type of dementia. All the dementias have specific needs.

Charmaine’s poppy is even on the front cover of my book, with kind permission of course!  You will see some striking pictures of sterling gardening when you visit her Twitter profile. The flowers at the top of this blogpost are hers.

My book completely rubbishes the view that nothing can be done to help individuals with dementia.  Quite the reverse.

A lot CAN be done; whether this is improving the design of the personal home, care home, or ward; improving the outside environments such as paving; improving adaptations and technologies for the home; improving advocacy for people with dementia and their carers; improving networks and social inclusivity (through even the social media); promoting dementia friends and dementia-friendly communities (even banks); encouraging debate (e.g. through Mr Darren Gormley’s excellent blog.)

Or it might include improving information for persons with dementia  or their carers. See for example Lee’s “Dementia Challengers” resource which shows ‘choice’ to be more than some minor policy whim; it’s a real thing which can help people to live successfully with dementia.

There is therefore a huge deal which could and should be done.

However, the system is like a giant oil-tanker where it’s really hard to change direction. Beth Britton’s blog is amazing – I can’t praise it highly enough. This, however, upset me about how Beth’s own father had been treated (from a blogpost of Beth from 6 November 2013, entitled “Does the world really stop?”):

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

And this was Sally‘s experience (from the Foreword from my book):

Dementia of Alzheimer type destroyed his brain so badly that my father was unable to feed himself, mobilise, or verbalise his needs. He became totally dependent on my mother 24/7. As the condition advanced, my father became increasingly frail, with recurrent chest infections due to aspiration from swallowing difficulties. Each time the GP would be called out, antibiotics prescribed, and so the cycle would begin again. As a nurse, I wanted to see proactive management of my father’s condition. The system locally, however, was quite unable to provide this service. I feel that the dementia of Alzheimer type is a terminal condition, and, as such, should be treated like other similar conditions in care models. What we instead experienced was a “reactive “system of care where the default option was admission to hospital into an environment where my father would quickly decline.

I am lucky as I work closely with international people of the highest calibre around the world; we have a real focus on trying to witness the quality of life resulting from policy, researching it, and doing something about any shortfalls.

Through my 11000 followers, I am hoping to take some people, from all parts of society, on this journey with me. ‘Dementia is everybody’s business’, as this excellent badge from Lucy Jane Marsters shows.

I hope very much you’ll be inspired by Beth, Gill, Kate, Lee, Lucy Jane, Norman, Sally, and Tommy and others to make dementia your concern too. It’s  the type of society we all have a stake in and we should not be afraid to learn from brilliant members of society who happen to live with dementia.