You need to ask the right questions to get the right answers

Idea concept with row of light bulbs and glowing bulb

Idea concept with row of light bulbs and glowing bulb

I think the worst aspect of the term ‘innovation’ is the term itself. For me, it more often than not conjures images of gimmicks and the snake oil salesmen of these gimmicks.

But there’s a certainly a place for ways in which people can be motivated to take an interest in his or her own health. There needs to be, nonetheless, an informed debate; for example, a healthy “health check” is no guarantee that you won’t succumb to some malady within a few years time.

I’ve known people to run a full distance on a cardiac treadmill in a hospital, with no monitored changes in heart function, only to drop dead seconds later in the hospital car park.

Nonetheless, most definitions of innovations are quite broad, and are generally doing things differently or doing different things.

It’s often said by physicians that the vast majority of a reliable diagnosis can be taken from a good history of symptoms. That I believe to be supremely the case for dementia.

I am not going to bombard you with the predicted million people living with dementia in the UK, as quite frankly if it’s your mum living with dementia that should be good enough for you to take an interest.

The question, “Have you had trouble with your memory?”, is likely to engender a lot of false positive responses as a diagnostic screening tool for dementia. A better one would be possibly, “Have you had trouble with memory but feel that your mood has been quite good?” But even this question would not be ‘fool proof’ as people can live with both dementia and depression.

There is a good ‘push’ argument against supporting a status quo in the current approach to dementia. That is, it is overly reliant on a medication solution, when the vast majority of drug research work in this area has resulted in failure. This ‘promissory hope’, of “one last push”, is needed to keep the general public engaged with this mission, and certainly helps the surpluses and profits in the short term.

Indeed, many of the arguments for ‘barriers to innovation’ can cut both ways. For example, it might be the case that in these economic challenging the times the last thing you’d want to do is to take a massive punt on redesigning diagnostic care services for dementia. Or, on the other hand, you might take the view that there’s nothing to lose.

The need for innovations to be ethical and accountable has become increasingly important under the umbrella term ‘responsible innovation’. Not all dementia is Alzheimer’s disease, and yet we are led down the Alzheimer’s path continually by the media. If there were a ‘biomarker’ for Alzheimer’s disease which was very specific and sensitive, and inexpensive to get the results of, would this information help you?

The answer is possibly – but if this were coupled with a private insurance system, you could also find your insurance premiums going through the roof, even if you were to have forty years of healthy living ahead of you.

Certainly the more expensive the investigation doesn’t make it more fool-proof. I’ve known patients with a clear diagnosis of frontal dementia who’ve had plum normal investigations including state of the art MRI scans. And likewise people with radiological atrophy on MRI who don’t have dementia.

I see innovations in dementia as a tool in dementia diagnosis, support and care, but only if used responsibly. Otherwise more noise can be added to the signal, as was clearly the case for incentivising primary care to run case finding tests for dementia. The very predictable unintended consequences that the number of false positive diagnoses of dementia also shot up, although ignorance is possibly worse than fear.

Ask any corporate strategist about the future and he or she will always tell you some of it is about turning threats into opportunities. For me, if you cut through the shill and waffle, an intelligent way to redesigning dementia care isn’t a bad idea, even if I would not necessarily start from here.




This is the talk I will be giving for #WHIS16, the World Health Innovation Summit in Cumbria, on innovation as a societal response to dementia.

Time to press ‘refresh’ on innovative post-diagnostic care for dementia


There’s no way of avoiding the issue. The drive towards improving ‘the diagnosis gap’ for dementia has been dreadfully depressing given how incredibly poor the post-diagnostic systems can be.

NHS England, in collaboration with others, which has a formidable track record in getting things disastrously wrong in dementia policy, are said to be fine-tuning a possible NHS outcome measure for people living with dementia independently with a good quality of life. One can only imagine.

Doing things differently is not some cheap meme as a cover for huge cuts at local and national level here, however. The chance to improve lives after a diagnosis in recovery, enabling meaningful choices, giving the chance for people to take part in a mainstream services such as education, housing and transport, are all pivotal. And commissioning should reflect that. The legal framework now is considerable, but the final common pathway is arguably the NHS Standard Contract. Reflecting recent domestic legislative changes in recent governments, and of course the EU Procurement Directive, there is now express reference to innovative new contracting models, including lea provider, integrated provider hubs and alliance contracting.

At the one end, living better with dementia is a philosophy. At the other end, it involves a person with dementia and carer being ‘recipients’ of services. Alliance contracting is more suited for arranging the post-diagnostic care because of the less adversarial approach by multiple providers in arranging care, an ‘in it together’ modus operandi to meeting pre-determined outcomes, and sharing of risk and responsibility. Increasingly, there is recognition of outcomes and values, and standards, having to be met regardless of precise care setting. This might be, for example, in relation to functional outcomes, patient experience and view, or the external built environment.

I don’t think a medical model is the best way forward, but it’s utterly irrelevant what I feel. The starting point must be a reference group of people who’ve received a clinical diagnosis of dementia recently, whether that be in the younger or older age group, and finding out whether services following diagnosis met up to expectation. My gut instinct is that an annual check up in neurology or geriatric outpatients simply to report what cannot be done compared to the year before only serves as a demoralising experience, and fails to acknowledge what people can do (rather than what they cannot do). A clinic run only by clinical nursing specialists, social work practitioners and allied health practitioners is not some ‘money saving gimmick’. I feel it would be a far more effective way of organising post-diagnostic care in English dementia policy.

As in all other walks of life, the basics have to be done well, whoever does them. This means building up relationships from skilled practitioners and professionals, people who understand what happens in dementia, and what might be anticipated to happen. Of course, the wider environment is important, with people having inside knowledge of how the system works. Clinical nursing specialists understand the configuration of care pathways, and are in an ideal position to help with service reconfiguration, one feels.

Specialist nurses are very well versed in symptom control of long term conditions, and this has massive advantages, not only in leading a healthy active life (perhaps remaining in the workforce if desired), but also in avoiding places such as A&E. Knowing the best way to control symptoms is inevitably a specialist art, but one based on the up to date evidence base. They have a proven track record in coordination, communication and emotional support. They work extremely effectively with other practitioners and professionals, and take on a strong advocacy rôle on behalf of patients, acting as consultants to other members of the workforce too. They support carers in a number of ways, not least in emotional and psychological support. They furthermore have a pivotal rôle in education, training and practice development.

Large numbers of people with dementia, on the other hand, are admitted to hospital very year, and their experience can be poor both within the hospital and in trying to leave the hospital (delayed discharges).  Their needs as individuals are often very complex, many unmet ultimately by the hospital admission. However, the input of Admiral nurses in Southampton with people with dementia and carers at Southampton, for Medicine for Older People, has been very beneficial clinically, and cost-beneficial too, but notably as well as supporting the development and confidence of staff nursing individuals with complex needs. And the economic benefits in Southampton are clearly not a ‘one off’.  The current service provision of Age UK Admiral nurses in Norfolk is in its infancy and has already demonstrated that significant savings and benefits can be achieved by supporting families/carers of people with dementia.

But there needs to be a strong dialogue with the public. The public needs to be crystal clear about the advantages of such specialist nurses, say compared to a doctor. People need to have their information needs met about such a nursing service, and this needs to be ongoing. Information can be much hyped up in delivery of such a service, but it is very easy to understate its importance. This might include information in relation to budgetary considerations, setting up goals and action plans, information about peer and support groups, or information about self care and management.

Given the considerable co-morbidity of dementia, there is a rationale for tackling physical illness for people living with dementia. Arguably also tackling physical factors might prevent the rate of progression to disability in dementia too. Self care and management not only improves physical health outcomes, but inevitably helps with mental wellbeing, greater confidence and reducing ill being such as anxiety. None of this is of course to undermine a fully funded health service.

However, amongst this mass, the system needs to be flexible, and deliverable. There is no need which is ‘basic’, but people should be able to call on help with shopping, housework, dressing, companionship, and so on, as hoped in the full ethos of re-ablement. Clinical nursing specialists are already able to work successfully with certain agencies locally, for example Age UK. The NHS tries to inform about key national information choices with platforms such as NHS Choices. Increasingly they need to responsive to the exact ‘state’ of statutory services, and navigation through welfare instruments such as the personal independence payment.

It is impossible to escape the need for care coordination and overseeing progress in acute medical services. The Admiral DIRECT service was launched in 2007, as a national helpline and e-mail service, and has given comfort to thousands in offering specialist advice to people with dementia and carers. And care coordination is not fluffy stuff either. Advice might include medication reviews, referral to liaison services, or speedy discharge planning. There is a huge amount of care coordination and social care, too. The rôle of social care practitioners  in enabling and protecting in dementia policy is by no means to be underestimated in national dementia policy in England, having a pivotal function in the implementation of mental capacity and liberty safeguards.

Integration of health and care makes care coordination infinitely easier improving outcomes. The St John Care Admiral experience in Oxfordshire with 71 care homes has seen Admiral nursing knowledge and expertise valued. And attention has to be given to end of life, in coordinating care between earlier faces of dementia to later faces. Evidence currently suggets during their last 90 days of life, people are twice as likely to die at home and are much less likely to need emergency hospital care. End of life is of course part of the continuum of care, and in the philosophy of person-centred care should not be seen as an unexpected event. There has been much emphasis therefore on a ‘good way to die’, and integrated care for dementia must take account of this best practice.

Programmes such as the ‘year of care’ with proper NHS support are significant to explore what is required to effectively deliver personalised care and support planning. Typical benefits to people with long term conditions include involvement patients in decisions about their care, and giving patients better understanding of their condition. The benefits for the wellbeing of people with dementia would be enormous, if the NHS invested here, to drive quality in improved quality of life, and observable by fewer complaints and less inappropriate use of medication. Even with conditions with a strong wellbeing component, such as diabetes and frailty, such approaches can be validly criticised for being overly medical. This I feel would be a wrong lever to pull, an overly medical ‘year of care’ – but one which emphasised reablement and rehabilitation in a social model of disability, advancing rights based approaches, would be very welcome here. Such an approach should be naturally attractive to commissioners, particularly if people living with dementia are actively involved in co-producing the roll-out of this programme. This would, arguably, provide a stimulus to the whole healthcare community to redesign services for long term conditions, ensuring the right care is provided, in the right place, at the right time, by people with the right skills, with the right funding tools; and fit in with QIPP.

Many helpful care services can be arranged through the local authority social services department. How services are organised, and the kinds of services offered, differs from one local authority to the next. Social workers have specific training and qualifications, and it is crucial that national policy no longer wilfully neglects social care in delivery of dementia policy (which might be ‘attractive’ given the recent catastrophic cuts to social care budgets). Social care practitioners may be involved in assessing a person’s needs for services, and in planning, co-ordinating and advising on services. They work in a wide variety of settings, and are known by a variety of names. For example, some work as ‘personal assistants’ in the person’s home, or in care homes as ‘care workers’.

Of course, the financial considerations are overwhelming, and services need to be a strong financial footing to be delivered effectively. But for too long innovation has been used as a lazy meme by people who don’t really understand it, used simply as form of marketing, and do not understand the critical nature of the diffusion of innovations in making them work. The change required for post-diagnostic care and support and dementia is a root and branch one. But the fact that people are crying out for it, and actually know they will have to be willing to pay for it, needs to be factored in.

Lots of small gains will see our shared vision for living better with dementia shine through

When I asked Charmaine Hardy (@charbhardy) if she would mind if I could dedicate my next book, ‘Living better with dementia’ to her, I was actually petrified.

Obviously, Charmaine had every right to say ‘no’. You see, I met Charmaine through Beth on Twitter, and I saw the three letters ‘PPA’ in Charmaine’s Twitter profile. Charmaine’s Twitter timeline is simply buzzing with activity. It’s hard not to fall in love with Charmaine’s focused devotion everywhere, nor with how much she adores her family. This passion, despite daily Charmaine working extremely hard, itself generates energy. People are attracted to Charmaine, as she never complains however tough times get. She thinks of ways to go forwards, not backwards, even when she had trouble with her roses recently. She basically creates a lot of good energy for all of us. As Charmaine’s Twitter profile clearly states, “I’m a carer to a husband with PPA dementia.”

Things are not right with the external world though. We have millions of family unpaid caregivers rushing around all the time, trying to do their best. Seeing these relationships in action, as indeed Rachel Niblock and Louise Langham must do at the Dementia Carers’ Call to Action (@DAACarers), must be a fascinating experience. There’s a real sense of shared purpose, often sadly against the “system”.

Contrary to popular opinion, perhaps, I have a strong respect for the hierarchy I find myself in. I have asked Prof Alistair Burns (@ABurns1907), a very senior academic in old age psychiatry, to write one of my Forewords. He also happens to be England’s lead for dementia, but I hope to produce my book as a work of balanced scholarship, which does not tread on any policy toes.

But underlying my book is a highly energised social network (@legalaware), based on my 14000 followers on Twitter. My timeline is curation of knowledge in action, in real time as my #tweep community actively share knowledge on a second-by-second basis. There’s a real change of us breaking down the barriers, and changing things for the better. Sure, some things of course don’t go to plan, but with innovation you’re allowed to crack a few eggs to make an omelette. I have enormous pleasure in that in this network people on the whole feel connected and with this power might produce a big change for the better.

My new book is indeed called ‘Living better with dementia: champions challenging the boundaries‘ – and I feel Kate Swaffer (@KateSwaffer) and Chris Roberts (@mason4233) are doing just that. They continually explain, reasonably and pleasantly, how the system could be much improved from their perspectives of living well with dementia, such that we could end up with a ‘level playing field’. And of course the fact we know what each is up to, for example pub quizzes or plane flights, means that we end up being incredibly proud even if we have the smallest of wins.

My proposed contents of this book are as follows: here.

I am not going to write a single-silo book on living better with dementia, however much the medics would like that.

For many of us in the network, dementia is not a ‘day job’. This shared vision is not about creating havoc. It’s simply that we wish the days of the giving the diagnosis of dementia as ‘It’s bad news. it’s dementia. See you in six months’, as outnumbered. That’s as far as the destruction goes. We want to work with people, many of whom I used to know quite well a decade ago, who felt it was ‘job done’ when you diagnosed successfully one of the dementias from seeing the army of test results. I would like the medics and other professionals not to kill themselves over our urge for change, and work with us who believe in what we’re doing too.

Whenever I chat with Kate and Chris, often with a GPS tracker myself in the form of Facebook chat, I am struck by their strong sense of equity, fairness and justice. And I get this from Charmaine too. The issue for us is not wholly and solely focused on how a particular drug might revolutionise someone’s life with dementia. The call for action is to acknowledge friends and families need full help too, and that people living with dementia wish to get the best out of what they can do (rather than what they cannot do) being content with themselves and their environment. We’re looking at different things, but I feel it’s the right time to explain clearly the compelling message we believe in now.

These values of course take us to an emotional place, but one which leads us to want to do something about it. For me, it’s a big project writing a massive book on the various contemporary policy strands, but one where I’ve had much encouragement from various close friends. For me, the National Health Service kept me alive in a six week coma, taught me how to walk and talk again, when I contracted meningitis in 2007. As I am physically disabled, and as my own Ph.D. was discovering an innovative way of diagnosing a type of frontotemporal dementia at Cambridge in the late 1990s, I have a strong sense of wishing to support people living with dementia; especially since, I suspect, many of my friends living well with dementia will have experienced stigma and discrimination at some time in their lives.

I understand why medics of all ranks will find it easier to deal with what they are used to – the prescription pad – in the context of dementia. But I do also know that many professionals, despite some politicians and some of the public press, are excellent at communicating with people, so will want to improve the quality of lives of people who’ve received a diagnosis. We need to listen and understand their needs, and build a new system – including the service and research – around them. I personally ‘wouldn’t start from here’, but this sadly can be said for much for my life. Every tweet on dementia is a small but important gain for me in the meantime. Each and every one of us have to think, ultimately, what we’ve tried to do successfully with our lives.

Suggested reading

Read anything you can by @HelenBevan, the Chief Transformation Officer for the NHS.

Her work will put this blogpost in the context of NHS ‘change’.

Does a policy of ‘Dementia Dogs’ unfairly indirectly discriminate against Cats?

Under our law, a mental health condition is considered a disability if it has a “long-term” effect on your “normal day-to-day activity”. This is defined under the Equality Act 2010.

Your condition is ‘long term’ if it lasts, or is likely to last, 12 months.

‘Normal day-to-day activity’ is defined as something you do regularly in a normal day. For example – using a computer, working set times or interacting with people.

There are many different types of mental health condition which can lead to a disability, including dementia. This Act makes it unlawful for service providers to unreasonably discriminate against disabled people. Since the Act was introduced, things have improved for many people with disabilities.

Traditionally, services that discriminate unfairly against disabled people face the wrath not only of the law, but of new generations of disabled people prepared, encouraged and empowered to fight for their rights.

Living well with dementia is therefore not just a societal aspiration. It is a legal necessity.

However, we know that the rights of people with dementia can seem to disappear after the diagnosis. This can happen in small ways. For example people in authority including health and social care professionals may only consult a carer and may make assumptions about what people with dementia want.

This occurs when an organisation (for example, the University, or a member of staff at the University) makes a decision, or puts in place a particular policy or practice, which, on the face of it appears to treat everyone equally, but which actually, in practice, leads to people from a protected group being treated less favourably than other people. This is unless the person applying the provision can justify it as a proportionate means of achieving a legitimate aim.

On a less serious note, does a policy of ‘Dementia Dogs’ unfairly indirectly discriminate against Cats?

Doggy Cat

Comparing the  intelligence of animals of different species is difficult although there are certain tests and problem sets that have proved to be useful. Making the tests equivalent, however, has proved difficult. Dogs are designed to be more efficient runners while cats have better ability at manipulating things with their paws. Thus a test that involved pulling strings or operating levers would tend to favor a cat, while a test involving moving from place to place, where speed is a measure of performance, would favor a dog.

Charles Darwin claimed, “Intelligence is based on how efficient a species became at doing the things they need to survive,” and one might argue that by this definition all species that stay healthy, remain numerous and avoid extinction are equally intelligent.

In the late 1970’s the psychologist Harry J. Jerison developed an alternative measure that he called the Encephalisation Quotient or EQ. It is a mathematically sophisticated comparison of the actual brain weight of an animal compared to the expected brain mass for that animal’s body size. This compensates for the fact that bigger animals tend to have bigger brains and basically shifts the question to one of whether the animal has a larger or smaller brain size than what we would expect for an animal with its body mass.

Based on the encephalisation quotient, the brightest animals on the planet are humans, followed great apes, porpoises, and elephants. The dog is close behind elephants in its EQ. Descending down the list we find cats lower than dogs, followed by horses, sheep, mice, rats and rabbits.

However, a real surprise occurs in some recent data provided by Suzanne Shultz and Robin Dunbar at Oxford University.

They wondered about whether there had been evolutionary changes in the Encephalisation Index. For example, when we domesticate animals, especially a companion animal like a dog, we are placing new demands upon it. Some of these demands are social in nature, such as understanding human communication gestures and words. Dogs are subjected to more of this pressure than are cats. Thus it might be expected that dogs would show a greater rise in their EQ than cats.

This was indeed verified by the Oxford researchers using 511 different samples ranging from extinct species only available as fossils, up through current living examples. Thus it appears that based on their EQ dogs are becoming progressively more intelligent over time while cats have remained at much the same level of mental ability that they had when we first domesticated them. This means that not only are dogs smarter than cats, but the gap between the species is increasing over time.

At the risk of starting another argument, these data may explain why we never hear about such things as a “seeing eye cat,” “police cat” or “search and rescue cat.”

Dementia Dog, one of the five innovative solutions developed through the Living Well with Dementia Design Challenge, is a service providing assistance dogs to people with dementia, helping them lead more fulfilled, independent and stress-free lives.

A sense of routine can often break down for people with dementia. Dogs can be trained to live to a consistent routine. Ultimately, each dog will be trained with the person with dementia and their carer so all three can operate as a team.

In certain cases, functional effects dementia causes can be diverse: forgetting to eat, drink or sleep can increase disorientation, medication can be forgotten and confusion can heighten anxiety about the outside world, increasing isolation. This is a factor to consider for caregivers too.

The dogs are taught to support existing patterns of waking, sleeping and eating for people with dementia.

Through responding to sound alerts they can also help with regular hydration, medication and toilet use.

The social and emotional benefits are potentially huge. Just by being able to get out more independently, in certain cases, the person with dementia can widen his or her circle of support.

If the policy of ‘Dementia Dogs’ does unfairly discriminate against ‘Dementia Cats’ on the grounds of equality, it can be argued that this is legally justified on the grounds of cats having a lower emotional intelligence than dogs.

This would need to be supported by suitable corroborative evidence, such as survey results.

Of cats and dogs aren’t humans, so the Equality Act (2010) doesn’t apply to them.

So I do apologise for wasting your time – but the first bit of this blogpost was important, I humbly submit.