Changing the story will change minds



The fundamental concern, not true, about many innovative initiatives in dementia care and support, such as engagement and ‘friendly communities’, is the unintended consequence that they act as a sticking plaster, but very little else. Proponents of sticking plasters will be the first to point out that they’re better than nothing.

But is it actually true that they’re better than nothing?

Take for example the scenario of someone being invited along to give a talk in response to a new Government/charity document, and that person has been given a diagnosis of dementia. Imagine, if after four years of intense ‘awareness’ raising and innovative initiatives into ‘friendliness’, including from some of the biggest names in the business, that person was accidentally left off the scheduled programme.

A concern has been for me is that engagement and involvement serves more of a marketing function, as a printing press for grant raising, rather than genuine involvement. That is, rubber stamp tick box ways of working. You can quite simply have a pathological culture and have the semblance of quasi-involvement.

Look past how that document from Government/charity might have been produced. At first, I have been encouraged to think of this as ‘who’s in the room..’ after Alison Cameron educated me on the ‘no more throwaway’ work of Prof Edgar Cahn, and the co-production workstreams from Nef and Nesta. Alison is totally correct. And it’s essential to add ‘…and who’s also listening to those people in the room.’

I am worried that this document would have been produced by the usual ‘big names’ in the third sector; few from people working in this area with a daily understanding of good professional practice and evidence; and not more than one or two living with dementia or carers. And you see this pattern repeated time and time again, say in the formation of “clinical excellence” guidelines.

And it at once becomes perfectly understandable how a person living beyond a diagnosis of dementia, to use Kate Swaffer’s succinct term, could have got left off the timetable. Shocking but not surprising. Whatever the explanation, the emotional effect has been made, but it is time for all of us to move on – until the next time that is.

Time and time again people with dementia or carers, if at all, are given a small slot, more often than not at the end of the day’s programme, exist as an afterthought for event organisers, with other speakers not aware of the defect. Exceptions though exist; a friend of mine living with dementia was given a slot in the morning in an excellent research conference, and was specifically told to take his time even if the government minister overran.

A lot of faith is put into the rules of the game. But sometimes the rules of the game need changing. There needs to be a fundamental change of culture. People with dementia have been advocating for their rights, but this is as useful as the issue of who is listening. A third friend of mine is about to set out the case for human rights and disability for people with dementia in Geneva; but will the relevant non-governmental organisations listen and act?

Like a dog sitting on the word ‘no’ in the phrase ‘no dogs allowed’, we have to concede Apartheid is no longer the law in South Africa. It is not acceptable to have a sign in a B&B saying ‘No Irish, no blacks, no dogs’. There is normally a lag between a moral outrage, and a change in behaviour. I hope that this will happen too in a change in narrative away from the prejudices of society about dementia.


Empowering the person living with dementia personally, with more than the diagnosis

The 2009 English dementia strategy, co-authored by Sube Banerjee, now Professor of dementia at Brighton and Sussex Medical School, and Jenny Owen, then head of social care in Essex, went a long way to providing a road map for a strategy.

This laid down useful foundations, many strands of which were to be embellished tactically under this Government through “The Prime Minister’s Dementia Challenge”. In some ways, its major limitations were unintended consequences not fully known at the time.

The English dementia strategy is intended to last for five years, and, as the 2009-14 ‘five years’ come to an end, now is THE right time to think about what should be in the next one. Irrespective of who comes to deliver this particular one, progress has been made with the current one. I believe that across a number of different strands the focus on policy should delivering care, cure or support, according to what is right for that particular person in his social environment  at that particular time.

The problems facing the English dementia strategy now are annoyingly similar to the ones which Banerjee and Owen faced in 2008. Whilst they do not have ‘political masters as such’, they can be said to have had some political success. But that should never have been the landmarks by which the All Party Parliamentary Committee, chaired by Baroness Sally Greengross, were to ‘judge’ this strategy document.

The national dementia strategy back in 2009 had three perfectly laudable aims.

The first is to change professional and societal views about dementia.

There was a perception that some Doctors would sit on a possible diagnosis for years, before nailing their colours to their diagnostic mast. So this need for professionals to be confident about their diagnosis got misinterpreted by non-clinical managers as certain doctors, particularly in primary care, being obstructive in making a diagnosis.

At the time, it was perceived that there also had to be an overhaul in the way doctors think about the disease – a quarter believe that dementia patients are a drain on resources with little positive outcome, according to a National Audit Office (NAO) in July 2007. But this has only been exacerbated, and some would say worsened, by language which maintains “the costs of dementia” and “burden”, rather than the value which people with dementia can bring to society.

Associated with this has undoubtedly been the promotion of the message that ‘nothing can be done about dementia’. Indeed, the G8 dementia summit, collectively representing the views of multi-national pharmaceutical companies and their capture within finance, government and research, spoke little of care, and focused on methods such as data sharing across jurisdictions. It’s likely corporate investors will see returns on their investment in personalised medicine and Big Data, but it is essential for the morale of persons with dementia that they are not simply presented as ‘subjects’ in drug trials (and misuse of goodwill in the general public too). Unfortunately, if elements of Pharma overplay their hand, they can ultimately become losers, an issue very well known to them.

High quality research is not simply about excellent research into novel applications of drugs for depression, diabetes or hypertension, or the plethora of molecular tools which have a long history of side effects and lack of selectivity, but should also be about high quality research into living well with dementia. This is going to be all the more essential as the NHS makes a painful transition from a national illness service back to a national health service, where wellbeing as well as prevention of illness and emergency are nobel public health aims.

This summit was presented with an ultimate aim of producing a ‘cure’ for dementia by 2025, or ‘disease modifying therapies’, with no discussion of how ethical it would be – or not be – for the medical profession to put into slow motion a progressive condition; if it happened that the condition were still  inevitable. The overwhelming impression of many is that the summit itself was distinctly underwhelming in what it offered in terms of grassroots help ‘on the gound’.

The G8 dementia summit did nothing to consider the efficacy of innovations for living well with dementia, for example assistive technology, ambient assisted living, design of the home, design of the ward, design of the built environment or dementia friendly communities. It did nonetheless commit to wanting to know about it at some later date.

It did nothing to consider the intricacies of the fundamentals of ‘capacity’ albeit in a cross-jurisdictional way, and how this might impact on advocacy services. All these issues, especially the last one, are essential for improving the quality of life of people currently living with dementia.

A focus on the future, for example genetic analysis informing upon potential lifestyle changes one might have to prevent getting dementia at all, can be dispiriting for those currently living with dementia, who must not be led to feel ignored amongst a sea of savage cuts in social care. The realistic question for the next government, after May 7th 2015, of whatever flavour, is to how to catalyse change towards an integrated or ‘whole person’ ethos; ‘social prescribing‘, for example, might be a way for genuine innovations to improve wellbeing for people with dementia, such as ‘sporting memories‘, to gain necessary traction.

Empowering the person living with dementia with more than the diagnosis is fundamental. It is now appreciated that living well with dementia requires time to take care over appreciating the beliefs, concerns and expectations of the person in relation to his or her own environment. This interplay between personhood and environment for living well with dementia has its firm foundations in the work of the late great Tom Kitwood, and has been assumed by the most unlikely of bedfellows in the form of ‘person centred care’ even by multinationals.

Rather late in the day, and this seemed to be a mutual collusion between corporate-acting charities and the media, as well as Pharma, was a volte face on misleading communications about the efficacy of medications used to treat dementia. NICE, although potentially themselves a target of ‘regulatory capture’, were unequivocal about their conclusions; that a class of drugs used to treat ideally early attentional and mnemonic problems in early dementia of the Alzheimer type, had a short-lived effect on symptoms. of a matter of a few months, and did nothing to slow progression of disease. Policy is obligated though to accommodate that army of people who have noticed substantial symptomatic benefits for that short period of time with such medications such as aricept (one of the medications known as cholinesterase inhibitors)? Notwithstanding that, I dare say a medication ‘to stop dementia in its tracks’, as has been achieved for some cancers and HIV/AIDS, would be ‘motivating’, though I think the parallels medically between the dementias, HIV/AIDS and cancer have been overegged by non-clinicians.

And this was after spending many years researching these medications. The opportunity cost of the NHS pursuing the medical model is not inconsiderable if one is indeed wishing to ‘count the cost’ of dementia, compared to what could have been achieved through simple promotion of living well methods.

Large charities across a number of jurisdictions have clearly been culprits, and are likely to be hoisted by their ptard, as organisations as the Dementia Alliance International, a group of leading people living with dementia, successfully reset  the agenda in favour of their interests at the Puerto Rico Alzheimer’s Disease International Conference this year.

The second problem that still needs addressing is diagnosing the conditions which commonly come under “the dementia umbrella”.

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[Source: here]

And clearly, the millions spent on Dementia Friends, a Department of Health initiative delivered by the Alzheimer’s Society, provides a basic core of information about dementia. It has a target of one million ‘dementia friends’, which looks unachievable by 2015 now. This figure was based on Japan, where the social care set-up is indeed much more impressive anyway, and which has a much lager population.


The messages of this campaign are pretty rudimentary, one quite ambiguous. The campaign suffers from training up potentially a lot of people with exactly the same information, delivered by people with no academic or practitioner qualifications in dementia necessarily. This means that such ‘dementia friend champions’ are not best placed to discuss at all the difference between the various medical presentations of dementia in real life, nor any of the possible management steps. Egon Ronay it is not, it is the Big Mac of dementia for the masses. But some would say it is better than nothing.

But has training up so many dementia friends actually done a jot about making the general public into activists for dementia, like being a bit more patient with someone with dementia in a supermarket queue? Dementia Friends clearly cannot address how a member of the general public might ‘recognise’ a person with dementia in the community, let alone be friendly to them, just by mere superficial observation of their behaviour. It is actually impossible to do so – laying to the bed the completely misleading notion that schoolchildren have been able to recognise the hallmarks of dementia in their elders, which have been missed by their local GPs.

This first issue about shifting attitudes in perception and identity of dementia is very much linked to the issue of diagnostic rates. A public accounts committee report in January 2008 had revealed that two-thirds of people with dementia never receive a specialist diagnosis. Only 31% of GPs surveyed by the NAO agreed that they had received sufficient training to help them diagnose and manage dementia, and doctors have less confidence about diagnosing the disease in 2007 than they had in 2004.

Have things fundamentally changed in this time? One suspects fundamentally not, as there has always been a reluctance to do anything more than a broad brush public health approach to the issue of diagnosis.

Goodhart’s law is named after the banker who originated it, Charles Goodhart. Its most popular formulation is: “When a measure becomes a target, it ceases to be a good measure.” The original formulation by Goodhart, a former advisor to the Bank of England and Emeritus Professor at the London School of Economics, is this: “As soon as the government attempts to regulate any particular set of financial assets, these become unreliable as indicators of economic trends.”

And now it turns out that recoding strategies are being developed in primary care so as possibly to inflate the diagnostic rates artifactually. But while the situation arises that people in the general public may delay seeing their GP, and thereafter by mutual agreement the GP and NHS patient decide not to go on further ‘tests’, primary care can quite easily sit on many people receiving a diagnosis. The evidence base for mechanisms such as ‘the dementia prevalence calculator’ has been embarrassingly thin.

For example, Gill Phillips gives a fairly typical description of someone ‘worried well’ over functional problems at a petrol pump very recently, but the acid test for English policy is whether a person such as Phillips would feel inclined at all to see a Doctor over her ‘complaints’? The danger with equating memory problems with dementia, for example, means that normal ageing, while associated with dementia, can all too easily become medicalised.

And while there are possibly substantial disadvantages in receiving a diagnosis, both personally (e.g. with friends), professionally (e.g. employment), or both (e.g. driving licence), one should consider the limitations of national policy in turning around deep-seated prejudice, stigma and discrimination. And the solution to loneliness, undoubtedly a profound problem, is not necessarily becoming a ‘Dementia Friend’ if this means in reality getting the badge but never befriending a person with dementia? A ‘point of action’ like donating to a large corporate charity may be low hanging fruit for members of the public and large charities, but I feel English policy should be ambitious enough to consider shifting deep-rooted problems.

Such problems would undoubtedly be mitigated against if  any Government simply came clean about what has been the increase in resource allocation, if any, for specialist diagnostic and post-diagnostic support services following this drive for improved dementia diagnosis rates. Lack of counselling around the period of diagnosis, with some people being reported as just being recipients of an ‘information pack’, is clearly not on, as a diagnosis of dementia, especially (some would say) if incorrect, is a ‘life changing event’.

Too often people with dementia, and close friends or family, describe only coming into contact with medical and care services at the beginning and end of their experience of a dementia timeline. Different symptoms, and different medications to avoid, are to be expected depending on which of the hundred causes of dementia a person has; for example Terry Pratchett and Norman McNamara have two very different types of dementia, posterior cortical atrophy and diffuse Lewy Body disease respectively. There is going to be no ‘quick fix’ for the lack of specialist support, though there is undoubtedly a rôle for ‘drop in‘ centres to provide a non-threatening environment for the discussion of dementia, encouraging community networks.

Ultimately, the diagnosis of dementia should be right for the person, at the correct time for him or her. This is the philosophy behind ‘timely’ rather than ‘early’ diagnosis, a battle which certain policy-makers appear to have won at last. Empowering the person living with dementia with that diagnosis can only be done on that personal level, with proper time and patience; ensuring sustainable dignity and respect for that person with a possible life-changing diagnosis of dementia.

The third priority of the strategy inevitably will be to improve the quality of care and support for people once they have been diagnosed.

At one end, it would be enormously helpful if the clinical regulators could hone on their minimum standard of care and those people responsible for care, including management. This is likely to be done in a number of ways, for example through wilful neglect, or the proposed anticipated proposals from the English Law Commission on the regulation of healthcare professionals anticipated to be implemented – if at all – in the next Government.

At the other end, there has been a powerful realisation that the entire system would collapse if you simply factored out the millions of unpaid family caregivers. They often, despite working extremely hard, report being nervous about whether their care is as good as it should be, and often do not consider themselves ‘carers’ at all.

There have clearly been issues which have been kicked into the long grass, such as tentative plans for a National Care Service while such vigorous energy was put into the Prime Minister’s Dementia Challenge. “Dementia friendly communities”, while an effective marketing mantra, clearly needs considerably more clarification in detail by policy makers, or else it is at real danger of being tokenistic patronisingly further stereotypes. Nobody for example would dare to suggest a policy framework called “Black friendly communities”. Whilst there are thousands of specialist Macmillan nurses for cancer, there’s about a hundred specialist Admiral nurses for dementia.

We clearly need more specialist nurses, even there is some sort of debate lurking as to whether Admiral nurses are ‘the best business model’. However, the naysayers need to tackle head on how very many people, such as those attending the Alzheimer’s Show this weekend in Olympia, describe a system ‘on its knees’, with no real proper coordination or guidance for people with dementia, their closest friends and families, to navigate around the maze of the housing, education, financial/benefits, legal, NHS and social care systems.

A rôle for ‘care coordinators‘ – sometime soon – will have to be revisited one suspects. But it is clearly impossible to have this debate without a commitment from government to put resources into a adequate and safe care, but while concerns about ‘efficiency savings’ and staffing exist, as well as existing employment practices such as zero-hour contracts and paid carers being paid below the minimum wage, how society values carers will continue to be an issue.

At the end of the day, care is profoundly personal, and repeatedly good care is reported by people who have witnessed continuity of care (away from the philosophy of the delivery of care in 15-minute “bite size chunks”). Unfortunately, the narrative in the NHS latterly has become one of business continuity, rather than clinical professional continuity, but this should ideally be factored into the new renewed strategy as well. I feel that this renewed strategy will have to accommodate actual findings from the literature taken as a whole, which is progressing at a formidable rate.

In a paper from February 2014, the authors review the the safety of  the use of antipsychotics in elderly patients affected with dementia, restricting their analysis mainly to the last ten years. They concluded, “Use of antipsychotics in dementia needs a careful case-by-case assessment, together with the possible drug-drug, drug-disease, and drug-food interactions.” But interestingly they also say, “Treatment of behavioral disorders in dementia should initially consider no pharmacological means. Should this (sic) kind of approach be unsuccessful, medical doctors have to start drug treatment. Notwithstanding controversial data, antipsychotics are probably the best option for short-term treatment (6-12 weeks) of severe, persistent, and resistant aggression.” There are very clearly regulatory concerns of the safety of some antipsychotics, and yet the consensus appears to be they – whilst carrying substantial risk in some of very severe adverse effects – may also be of some benefit in some. It will be essential for the new National Dementia Strategy keeps up the only rapidly changing literature in this area, as do the clinical regulators.



Finally, in summary, I believe that there is enormous potential for England, and its workforce, to lead the way in dementia, in a way of interest to the rest of the world. I do think it needs to take account of the successes and problems with the five year strategy just coming to an end, with a three-pronged attack particularly on perception and identity, diagnosis and care. But, unsurprisingly, I believe that there are still a few gear-changes to be made culturally in the NHS, however it becomes delivered in the near future. There needs to be a clear idea of the needs of all stakeholders, of which the needs of persons with dementia, and those closest to them, must come top. There needs to be clear mechanisms for disseminating good practice, and leading on evidence-based developments in dementia wherever they come from in the world. And dementia policy should not be  divorced from substantial developments from other areas of NHS England’s strategic mission: particularly in long-term conditions, and end-of-life care. This, again, would be the NHS delivering the right level of help for all those touched by dementia, from the point of diagnosis and well beyond.

Despite the sheer enormity of the task, I am actually quietly confident.



Innovations in dementia can be driven from the NHS too


It’s not as if the NHS has never thought about innovation.

In 2011, it published a report called “Innovation: health and wealth“.

The barriers to innovation are well known. The report indeed provides a good synthesis of some of the more common barriers.


Simon Stevens, as NHS England’s new CEO, in identifying private healthcare firms as key players is bound to have produced fireworks.

Simon Stevens has highlighted “the innovation value of new providers” in the provision of health services. He said failure to appreciate that value was one of a number of issues the NHS collectively had got wrong.

This to me is a reasonable point, even if articulated somewhat aggressively.

For every good innovative idea, there are thousands of turkeys. For this, you need to take creative risks in a healthy innovative culture.

The NHS really has problems with talking risks particularly in light of the intense ‘zero fault’ memes sent out by Jeremy Hunt, the current Secretary of State for Health.

Also there’s another elephant in the room.

Many junior medics get through medical school without any training in any form of business management, let alone innovation management.

Innovation management is a rewarding field which I studied for my MBA.

It’s not simply doing ‘more for less’ as popularly espoused by self-appointed ‘entrepreneurs’ and ‘innovators’.

Therefore, measuring any beneficial outcomes in the NHS, and rewarding them is intrinsically difficult. For this, the NHS needs to be seen to rewarding and training properly its innovators.

Addressing an audience of 300 health professionals in Newcastle, Stevens said he was “struck by the misplaced consensus that seems to exist within the health service on various issues”.

There is also, though, a powerful consensus amongst some that the NHS “can’t do “innovation.

Drawing on his decade of experience in global healthcare working for the US company UnitedHealth, Stevens said: “Things that are assumed to be inevitable care delivery constraints here often turn out not to be in other countries.”

I don’t particularly know what Stevens’ motives are.

It could be that the present government wishes to promote social enterprises and mutuals, through longer-term investor tools such as social impact funds, so that multinational corporations can go into strategic alliances with social enterprises to compete with the NHS for contracts.

This might be consistent with “the critical role of the third sector, and the innovation value of new providers”.

Certainly, the private sector does an important rôle to play in innovations in dementia, such as assistive technologies and ambient-assisted living.

But the idea of outsourcing innovation to the private sector is one for me which lacks imagination, but will transfer resources from the NHS to multinational corporations and social enterprises.

I actually do not have an ideological objection to this, though many will do.

But I do find sad that Stevens has given a speech which acts as a powerful market signal to his intentions. It’s almost as if Stevens in one foul swoop has intimated that the NHS is incapable of “doing” innovation, and – even more dangerously – has ignored the progress which had been made.

“Life story” – an interesting example of networks being used constructively for innovation in dementia

Innovations which have a goal of improving wellbeing have a very good future in dementia care. Those which harness networks are likely to be particularly successful.

There are currently 800,000 people with dementia in the UK, with over 17,000 younger people. There are therefore serious questions as to how to maximise their chances of living well as individuals, as far as possible.

New innovations for people living with dementia are not at all trivial. One broadly accepted definition of an innovation is “the adoption of an idea or behavior, whether a system, policy, program, device, process, product or service, that is new to the adopting organisation”. A “strategy innovation” means thinking in an entirely new way about the basis on which the organisation, system or industry operates.

The assumption that dementia is best managed through a medical model with drugs that can cure or treat well the symptoms has necessitated challenges, not least because many of the medications are ineffective for many.

A ‘person centred approach’ places the person at the centre of their own care, and considers the care and support provided by others, and not simply as someone with dementia. “Person-centred” care, to improve individuals’ wellbeing, was first initiated in the U.K. in the 1990s by professor Tom Kitwood, who treated people with dementia as individuals, referring to their “personhood” to reinforce the fact that they still experienced emotions, both positive and negative.

Indeed, Prof Sube Banerjee, the new Chair of Dementia at Brighton and Sussex and Medical School, has demonstrated with colleagues that wellbeing in dementia can be dissociated from cognitive performance.

A plan for person-centred care in dementia, launched in France in 2008 together with the use of internal day care centres within nursing homes, dramatically reduced the prescription of anti-psychotic drugs – in some cases to zero. So a clinical and financial rationale for such innovations can be found.

A nice example of a community interest group which has implemented networks in introducing a philosophy is called “Life Story Network” (LSN).

Specifically, a ‘life story’ or’ life history’ is the term usually given to describe a biographical approach, which involves reviewing and evaluating an individual’s past life events. It involves working with a person and/or their family to find out about their life, recording that information in some way and then using the information with the person in their care.

It therefore is an excellent example of a person-centred approach in dementia care.

Whilst based on the principles of reminiscence and storytelling, it is distinct in that it also involves a critical review of life events and identifies present/future wishes.  Ultimately relevant aspects of a person’s past and present life are recorded with the aim of using this information to benefit them in their present situation.

As interest in integrated models of care continues, see for example the recent “Oldham Commission in Whole Person Care“,  this matter has become particularly relevant to all leaders in NHS and other care providers (including social care).

Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us. People with dementia sometimes need help to communicate their histories and identities, and ‘Life Story work’ might provide a way for them to do this more easily.

LSN is a social enterprise which works with a range of partner organisations individuals. Social enterprises are well suited to deliver person-centred care, as they are typically dynamic and diverse businesses set up to address social or environmental need. promote the value of using life stories to improve the quality of life and wellbeing of people and communities, particularly those marginalised or made vulnerable through ill health or disability.

The benefits of such an approach include promoting increased understanding of the person and supporting the delivery of person-centred care. Other benefits include improving relationships between family caregivers and staff within inpatient settings.

Life stories also provide a valuable insight into the life of someone especially when they have difficulty in sharing this information themselves. Life Story work can be used to help develop a better understanding of someone needs and wishes so that care can be provided in a person- centred way.

According to the “Your Community Matters” Report produced by LSN in July 2013, there is a wealth of evidence, both global and national, which supports a more integrated, community based wellbeing approach to enabling individuals to remain connected with their support networks where they live. This approach puts a positive value on social relationships and local support networks, on self confidence and the ability of people to take control of their circumstances.

People with dementia and their families are to play a pivotal role in a pioneering study being led by Kate Gridley into the effectiveness of using Life Stories to influence their care and improve their quality of life. This new 30-month study will provide an essential evidence base for the technique which has the potential to help many of the people in the UK with dementia, as well as the people who care for them.

Researchers will carry out a systematic review of literature on Life Story work and gather qualitative data through focus groups involving people with dementia, family carers and professionals. They will then develop a theoretical good practice model of Life Story work as well as surveying the current use of Life Story work in dementia care across England. Finally, the researchers will assess the potential effects and costs of using the technique in specialist inpatient and long-term care settings, and consider further evaluation.

Networks are crucially important for the functioning of networks. A view has arisen that social networks such as Twitter act as innovative broadcasting devices, connecting people’s need for information and attention. But they are fundamentally collaborative.

The basic premise of social networks – allowing users to build a custom group of friends and colleagues with whom you can choose to selectively interact –is its broad appeal. But this premise has, in fact, been around for many decades in science research. Contrary to the popular image of the lone scientist toiling away in an isolated lab, just about all scientific discovery is a collaborative effort that requires extensive networks of lab teams.

The Twitter account @LifeStoryNetwrk is relatively young. People can choose also to interact with traditional competitors on such networks, and this can drive innovation. The dilemma is: if these actors collaborate, they become stronger competitors, but they also strengthen their rivals’ positions.

The advent of the Internet has provided new opportunities for collaboration thought impossible just a few years ago. Exchanging ideas and work by e-mail or Wikis, for example, has opened up new avenues for spontaneous communication.

Virtual teams such as  “Collaborative Innovation Networks” (COINs) are already in existence. COINs are virtual teams of self-motivated people with a collective vision, enabled by technology to collaborate in achieving a common goal – an innovation – by sharing ideas, information, and work.

An example of a COIN in the LSN is its online forum, where information can be shared and discussed. This demcoratising effect means that we can influence the future, through contributing in an online network to Commission on Residential Care which is secure and typified by peer support. 

This approach was been widely adopted already in the dementia sphere. Towards the end of last year, exciting new proven benefits in the training of dementia staff in Australia were published.

It is very likely that social enterprises will act as drivers of good innovation practice in dementia care. Pooling of abilities in the EU SELUSI initiative, for example, is a testament to this. One of its aims is “to create a trusting environment with social enterprises across Europe, as well as generate new evidence that could usefully inform the practices of network organizations” (sic).

Working together to improve the wellbeing of a person with dementia is not simply an innovation. It’s common sense, as it potentially improves something for persons with dementia we can do something about.

That is, their wellbeing.