A large scale cultural national transformation is needed to drive whole person care in dementia

I’ll be blunt. It’s my dream for the #NHS to run a proactive not reactive service, promoting the whole person living well with dementia.

The Australian jurisdiction have recently provided some helpful inroads here.

The narrative has changed from one of incessantly referring to people living with dementia as a ‘burden’ on the rest of society. For example, to push a sense of urgency that we have an ‘ageing population timebomb’, the cost of the ageing people with dementia flies completely in the face of other public health campaigns which emphasise, for example, “dementia is not a natural part of ageing”.

“The NHS as a whole and individual hospitals recognise that dementia is a significant, growing and costly problem for them” is the opening gambit of the Alzheimer’s Society “Counting the cost” report.

An easy to use online resource, Valuing People from Alzheimer’s Australia has been developed in collaboration with community aged care providers who have helpful in stablishing a person centred approach to service delivery.

Person centred care is a development to provide ervices provided in a way that is respectful of, and responsive to, the preferences, needs and values of people and those in the care and support network.


I cannot recommend this resource highly enough. The main source is here.

In fact, it summarises succinctly the conclusions I came to after my exploration of personhood in my book ‘Living well with dementia’.  The late great Prof Tom Kitwood said of personhood, “It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust”.

If a Labour government is elected on May 8th 2015, the first necessary step is to legislate for the repeal of the Health and Social Care Act (2012) and to enact new legislation to allow for integrated packages provided they are justified by clinical outcome. For this to happen, it will be necessary for Labour to undergo a ‘conscious uncoupling’ from all the baggage of EU competition law. For this, it is essential also that the UK government is able to carve out provisions from the investor protection clauses and/or the rest of the EU-US free trade treaty (TTIP).

The “whole person care model” has become attractive to those who wish to break down silos between different physical health, mental health and social care “silos”. It has been worked up in various guises by various parties.

A helpful construct is provided in the document, “Healthcare for complex populations: the power of whole-person care models” originally published by Booz & Company in 2013.

A major problem with dementia care, however it is delivered, is that it is full of divisions: public vs private care, fragmented vs national care, competitive vs integrated models.  Operating in silos can’t work because of the nature of the dementias: the mood and cognition of a person with dementia profoundly affects how they might interact with the outside world, for example perform activities in the outside world. And we know that taking part in leisure activities can promote a good quality of life.

Their model is, though, a useful starting point.


Dementia cannot be only addressed by the medical model. In fact, it is my sincere belief that it would be highly dangerous to put all your eggs in the physical health basket, without due attention to mental health or social care. For example, last week in Stockholm, the international conference on Parkinson’s disease, a condition typified by a resting tremor, rigidity and slowness of movement, which can progress to a dementia, often is found to have as heralding symptoms changes in cognition and mood.

So it’s pretty clear to me that we will have to embark on a system of multidisciplinary professionals who could all have a part to play in the wellbeing of a person with dementia, depending on his or her own stage in life, and ability or need to live independently. “Care coordinators” have traditionally been defined incredibly badly, but we do need such an identity to navigate people with dementia, and actors in the care and support network, through the maze.

“Care collaborators” in their construct are very wonkily articulated, like “pre-distribution”, but the concept is not stupid. In fact it is very good. One idea is that people with dementia could act as support as other people with dementia, for people on receiving a diagnosis of dementia. The rationale for this is that people living with long term conditions, such as for example recovery from alcoholism, often draw much support from other people living with other long term conditions, away from a medical model. There needs to be safeguards in the system to safeguard against a lot of unpaid goodwill (which currently exists in the system.)

Informatics would have a really helpful rôle here, being worked up in telecare and assistive technology. But even simple disruptions such as a person living with dementia at risk of falling from problems with spatial depth perception being able to ‘hot email’ a care coordinator about perceived problems could trigger, say, an early warning system. And with various agents in the provision of care being involved in differing extents it will be up to NHS England to work out how best to implement a single accountable tariff. Falls are just the sort of ‘outcome metric’ which could be used to determine whether this policy of ‘whole person care’ for people living with dementia is working. And, even though everyone ‘trots it out’, the performance on avoided hospital admissions could be put into the mixer. It’s already well recognised that people with dementia can become very disoriented in hospital, and, and despite the best efforts of those trying to improve the acute care pathway, people with dementia can often be better off away from hospital in the community. But it’s imperative that care in the community is not a second-rate service compared to secondary care, and proper resourcing of community whole person care is essential for this before any reconfiguration in acute hospital services.

But the private sector has become such a ‘bogey term’ after arguably the current Government overplayed their hand with the £3bn Act of parliament which turbo-boosted a transfer of resource allocation from the public to private sector. Any incoming government will have to be particularly sensitive to this, as this is a risk in strategy for the NHS.

In October 2005, Harold Sirkin, Perry Keenan and Alan Jackson published a highly influential article in the Harvard Business Review entitled “The hard side of change management“. Whilst much play has in fact been made of politicians having to be distant from running the NHS, a completely lubricous line of attack when it is alleged that Jeremy Hunt talks regularly to senior managers and regulators in the NHS, the benefits of clear political leadership from an incoming Labour government are clear.

Andy Burnham MP has already nailed his colours to the mast of ‘whole person care’ on various occasions, and it is clear that the success of this ambitious large scale transformation depends on clear leadership and teamwork from bright managers. Take for example the DICE criteria from Sirkin, Keenan and Jackson:


But this is perfectly possible from an incoming Government. The National Health Service has a chance to lead on something truly innovative, learning from the experience of other jurisdictions such as Australia and the USA.

As alluded to in the new resource from the Alzheimer’s Australia, this cultural change will require substantial ‘unfreezing’ from the current mindset for provision of care for people with dementia. It will require a change in explicit and implicit sources of knowledge and behaviours, and will need to be carefully brought about by learning from the successes and failures of pockets of implementation.

The whole project’s pretty high risk, but the rewards for people living with dementia, and members of the care and support network, are potentially vast. But it does require the implementation of a very clear vision.





[First posted on the ‘Living well with dementia‘ blog]

“There’s more to a person than the dementia”. Why personhood matters for future dementia policy.

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.



There’s more to a person than the dementia.

In 1992, the late Prof Tom Kitwood founded Bradford Dementia Group, initially a side-line. Its philosophy is based on a “person-centred” approach, quite simply to “treat others in a way you yourself would like to be treated”.

A giant in dementia care and academia, I feel he will never bettered.

His obituary in the Independent newspaper is here.

Personhood is the status of being a person. Its importance transcends medicine, nursing, policy, philosophy, ethics and law even.

Kitwood (1997) claimed that personhood was sacred and unique and that every person had an ethical status and should be treated with deep respect.

A really helpful exploration of this is found here on the @AlzheimerEurope website.

Personhood in dementia is of course at risk of ‘paralyis by analysis’, but the acknowledgement that personhood depends on the interaction of a person with his or her environment is a fundamental one.

Placing that person in the context of his past and present (e.g. education, social circumstances) is fundamental. Without that context, you cannot understand that person’s future.

And how that person interacts with services in the community, e.g. housing associations, is crucial to our understanding of that lived experience of that person.

All this has fundamental implications for health policy in England.

Andy Burnham MP at the NHS Confederation 2014 said that he was concerned that the ‘Better Care Fund’ gives integration of health services a ‘bad name’.

It is of course possible to become focused on the minutiae of service delivery, for example shared electronic patient records and personal health budgets, if one is more concerned about the providers of care.

Ironically, the chief proponents of the catchphrase, “I don’t care who is providing my care” are actually intensely deeply worried about the fact it might NOT be a private health care provider.

Person-centered care is an approach which has been embraced by multi-national corporates too, so it is perhaps not altogether a surprise that Simon Stevens, the current CEO of NHS England, might be sympathetic to the approach.

Whole-person care has seen all sorts of descriptions, including IPPR, the Fabians, and an analysis from Sir John Oldham’s Commission,  and “Strategy&“, for example.

The focus of the National Health Service though, in meeting their ‘efficiency savings’, has somewhat drifted into a ‘Now serving number 43′ approach.

When I went to have a blood test in the NHS earlier this week, I thought I had wandered into a delicatessen by accident.


But ‘whole person care’ would represent a fundamental change in direction from a future Government.

Under this construct, social care would become subsumed under the NHS such that health and care could be unified at last. Possibly it paves the way for a National Care Service at some later date too.

But treating a person not a diagnosis is of course extremely important, lying somewhat uneasily with a public approach of treating numbers: for example, a need to increase dementia diagnosis rates, despite the NHS patient’s own consent for such a diagnosis.

I have seen this with my own eyes, as indeed anyone who has been an inpatient in the NHS has. Stripped of identity through the ritualistic wearing of NHS pyjamas, you become known to staff by your bed number rather than your name, or known by your diagnosis. This is clearly not right, despite years of professional training for current NHS staff. This is why the campaigning by Kate Granger (“#hellomynameis”) is so important.

It is still the case that many people’s experiences of when a family relative becomes an inpatient in the National Health Service is a miserable one. I have been – albeit a long time ago – as a medical student on ward rounds in Cambridge where a neurosurgeon will say openly, “He has dementia”, and move onto the next patient.

So the message of @DementiaFriends is a crucial one.

Together with the other four messages, that dementia is caused by a diseases of the brain, it’s possible to live well with dementia, dementia is not just about losing your memory, dementia is not part of normal ageing, the notion that there’s more to a person than the dementia is especially important.

And apart from anything else, many people living with dementia also have other medical conditions.

And apart from anything else, many people living with dementia also have amazing other skills, such as cooking (Kate Swaffer), fishing (Norman McNamara), and encouraging others (see for example Chris Roberts’ great contributions to the community.)


Kitwood, T. (1997).Dementia reconsidered: the person comes first. Open University Press.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This gap is still enormous.

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

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

Meet the author

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

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

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

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

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

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

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

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

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

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

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

I thought so.

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The group dynamics worked really well.

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

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

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

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

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

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

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


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

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

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

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

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

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


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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

Tweet 1

Tweet 2


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

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

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

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

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

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

A person newly diagnosed with dementia has a question for primary care, and primary care should know the answer

GP seeing his patient

Picture this.

It’s a busy GP morning surgery in London.

A patient in his 50s, newly diagnosed with Alzheimer’s disease, a condition which causes a progressive decline in structure and function of the brain, has a simple question off his GP.

“Now that I know that I have Alzheimer’s disease, how best can I look after my condition?”

A change in emphasis of the NHS towards proactive care is now long overdue.

At this point, the patient, in a busy office job in Clapham, has some worsening problems with his short term memory, but has no other outward features of his disease.

His social interactions are otherwise normal.

A GP thus far might have been tempted to reach for her prescription pad.

A small slug of donepezil – to be prescribed by someone – after all might produce some benefit in memory and attention in the short term, but the GP warns her patient that the drug will not ultimately slow down progression consistent with NICE guidelines.

It’s clear to me that primary care must have a decent answer to this common question.

Living well is a philosophy of life. It is not achieved through the magic bullet of a pill.

This means that that the GP’s patient, while the dementia may not have advanced much in the years to come, can know what adaptations or assistive technologies might be available.

A GP will have to be confident in her knowledge of the dementias. This is an operational issue for NHS England to sort out.

He might become aware of how his own house can best be designed. Disorientation, due to problems in spatial memory and/or attention, can be a prominent feature of early Alzheimer’s disease. So there are positive things a person with dementia might be able to do, say regarding signage, in his own home.

This might be further reflected in the environment of any hospital setting which the patient may later encounter.

Training for the current GP is likely to differ somewhat from the training of the GP in future.

I think the compulsory stints in hospital will have to go to make way for training that reflects a GP being able to identify the needs of the person newly diagnosed with dementia in the community.

People will need to receive a more holistic level of support, with all their physical, mental and social needs taken into account, rather than being treated separately for each condition.

Therefore the patient becomes a person – not a collection of medical problem lists to be treated with different drugs.

Instead of people being pushed from pillar to post within the system, repeating information and investigations countless times, services will need to be much better organised around the beliefs, concerns, expectations or needs of the person.

There are operational ways of doing this. A great way to do this would be to appoint a named professional to coordinate their care and same day telephone consultations if needed. Political parties may differ on how they might deliver this, but the idea – and it is a very powerful one – is substantially the same.

One can easily appreciate that people want to set goals for their care and to be supported to understand the care proposed for them.

But think about that GP’s patient newly diagnosed with dementia.

It turns out he wants to focus on keeping well and maintaining his own particular independence and dignity.

He wants to stay close to his families and friends.

He wants to play an active part in his community.

Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different.

Once you’ve met one person with dementia, you’ve done exactly that: you happen to have met one person with dementia.

Care and support plans should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person. It’s going to be, further, important to be aware of those individuals’ relationships with the rest of the community and society. People are always stronger together.

And technology should’t be necessarily feared.

Hopefully a future NHS which is comprehensive, universal and free at the point of need will be able to cope, especially as technology gets more sophisticated, and cheaper.

Improvements in information and technology  could support people to take control their own care, providing people with easier access to their own medical information, online booking of appointments and ordering repeat prescriptions.

That GP could herself be supported to enable this, working with other services including district nurses and other community nurses.

And note that this person with dementia is not particularly old.

The ability of the GP to be able to answer that question on how best her patient can lead his life cannot be a reflection of the so-called ‘burden’ of older people on society.

Times are definitely changing.

Primary care is undergoing a silent transformation allowing people to live well with dementia.

And note one thing.

I never told you once which party the patient voted for, and who is currently in Government at the time of this scenario.

Bring it on, I say.

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.

I have not set out to build a social movement, but I want to do this for persons with early dementia

I received this message last night.

private message

The thing is, I don’t buy into the profoundly negative imagery of the media, including memes such as “crippling”, “horrific”, “timebomb” and “explosion”.

Whilst some people, and caregivers, are undeniably “suffering”, you can’t expect all people to agree with this particular narrative at all times, I feel.

One of the things I’ll never forget was when my Ph.D. supervisor, Prof John Hodges, received a complaint about me doing neurocognitive assessments in a person with frontal dementia back in 1997.

This type of dementia, commoner in an age group below 60, is characterised by a personality and behavioural change early on, often in the absence of deficits in thinking such as memory or perception. You need an account from someone very close to that person with dementia, as the person himself or herself can have no insight into the changes.

I remember saying to the wife of a young man with this type of dementia, “I would never have guessed that he had a dementia”. This comment had upset her very much, and by that stage I was years into my medical training.

This one event is something I’ve never forgotten in the 16 years subsequently.

I remember I literally didn’t sleep for a week, and I was profoundly upset by this. But it does lie to the heart of some of my reservations about the term ‘dementia friendly communities’. There are some people for whom you would not be able to tell they were living with dementia.

I understand the focus on memory problems in the general media, as this can be a dominant presentation in typical Alzheimer’s disease, the commonest form of dementia. But memory is only one of the cognitive functions we have.

What unites all people with dementia is that the law makes a verdict on whether they are able to make decisions. This is called legal capacity.

Decisions impact on many aspects of life, such as working out how to spend your money, or which treatment to go for in hospital.

And capacity is very topical. Not only is the House of Lords seeking to update the Mental Capacity Act (2005), but also neuroscientists currently want to know what members of the public think about their research on decisions.

This is therefore not about denying compassion or dignity for all persons with dementia. It’s about redressing a power balance, where I feel people who’ve just received a diagnosis of dementia might learn something constructive about dementia, decisions and science of how to influence decisions.

This is profoundly about having a discussion with persons with dementia.

I’ve been on the receiving end of ‘look at my website’ and I find it intensely nauseating. But I wish my website, which I intend to build with funds from a crowdfunding campaign and scientific grant bodies, to allow persons with dementia to think about their own decisions.

It’s well known in the science of decisions for example that some ‘bad’ decisions can be avoided by not following ‘hot impulses’ or following the ‘herd effect’.

So here is my explanatory video:

Whilst I have been urged to make this campaign so that ‘it touches every person with dementia’, I do also want a grown up conversation without dumbing down any of the concepts.

A lot of feedback has concentrated on the ‘social movement’ aspect of it, but I should like to say whilst I say I would like to build one, I really mean it’s important for me personally that this gathers some momentum.

And I think it will from initial feedback from persons with dementia, and even people involved in the NHS and social care.

All too easily dementia policy can have more regard to marketing and tokenism, which lends itself to commissioning ‘tick box’ culture. My campaign is not for them.

And I’ve got a bit of a shock for some people – I am determined to make a big success of it.

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

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

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

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

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

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

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

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

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

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

In other words, it IS highly personal and individual.

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

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

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

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

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

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

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

“C” for compassion

And “D” for dementia friendly communities.

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

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

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

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

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

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

The Alzheimer’s Society website reports:

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

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

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

This was Ian McCreath today.

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

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

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

and they weren’t the only ones:-

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

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

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

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

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

But there’s scope to be positive.

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

An innovative programme to encourage extensive knowledge sharing: the HE KSS/BSMS Primary Care Dementia Fellowship Programme

The HE KSS/BSMS (Health Education Kent Surrey and Sussex / Brighton and Sussex Medical School) have launched the “Primary Care Dementia Fellowship Programme”.

This is a programme for GPs, practice nurses and staff, and community nurses in Kent, Surrey and Sussex.

(Health Education Kent Surrey and Sussex will provide the funding to release Fellows to attend a regional skills development programme that will run from March to September 2014.

The Fellows will join with doctors and nurses from Kent, Surrey and Sussex (KSS) to build the knowledge and skills needed for them to create better dementia services in KSS.

Prof Sube Banerjee and Breda Flaherty of Brighton and Sussex Medical School (BSMS) are leading this initiative based on their successful experience in the NHS London Deanery.

It appears that the main aim is to build a network of Fellows who can act as ‘change catalysts’ (my words not theirs), to spread best contemporaneous practice in dementia care.

It’s important as dementia is one of the top five strategic priorities in the KSS Skills Development Strategy.

Modules will be led by Banerjee and Flaherty, with contributions from clinical experts in dementia; colleagues in social care; people in the care home sector; NGOs; persons living with dementia and carers; specialists in service development; commissioners and researchers.

I believe that such a course will have considerable competitive advantage in being totally disruptive in how traditional training for juniors in dementia is conducted.

The value is clearly in the collaborative ties between members of the network. By lowering the cultural barriers in this way, the team at Sussex have something very special here.

The set-up is perfect for boundary-less knowledge sharing, and this is enormously value as we all get to grips with what the priorities in local and national policy in dementia might be.

There are three modules running from March to June: good practice in dementia assessment and care, good practice in dementia, and changing practice.

These are followed by a ‘Next Steps’ conference and a period of evaluation and research.

Such an approach might become paradigmatic for future learning in the NHS in dementia.


Blurred lines in English dementia policy – privatisation in all but name

In case you don’t like the soundtrack, here are the slides.

To some extent, Europe resolved our dispute about whether we should aspire to an ‘early diagnosis’, or ‘timely diagnosis’ for dementia. The overall consensus from the European ALCOVE project was that a diagnosis should be timely, in keeping with the needs of the person with a dementia, his friends, his family or his carers.

This was an extremely helpful move in English policy, although the road had not been that clear.

One blurred line in the public was how dementia so massively became conflated with all memory problems in the elderly. Whilst it was argued that the memory problems in Alzheimer’s disease should no longer be passed off as ageing (and indeed there are strong cultural pressures elsewhere for calling dementia ageing), there was some concern from GPs that older people thought their memory problems were dementia because of the widespread media campaign. Many of these individuals were later to arrive at a diagnosis of minor cognitive impairment, underactive thyroid, or depression. Given that there are hundreds of different causes of dementia which can affect any part of the brain and brainstem (though they all tend to start off in different areas), it’s not altogether surprising that some of the dementias don’t present with memory problems at all.

The drive to make the diagnosis is almost certainly going to be affected by the policy from NHS England to achieve ‘ambitions’ for increasing dementia diagnosis rates. The evidence from the MRC study at Cambridge has demonstrated that this prevalence has in fact been falling over some decades, so there is serious concern that a drive to increase dementia rates will lead to a large number of false diagnoses in 2014. This is definitely one to watch, as a false diagnosis can lead to very serious harmful repercussions. Nonetheless, the number of people who have a MMSE in the region of 10-15 on initial diagnosis is, arguably, staggering, and blatant lack of diagnoses of more obvious presentations of diagnosis most people would agree is unacceptable.

The spotlight in G8, and certainly the presence of corporates there, will lead to increased scrutiny of those people who financially have much to gain from an early diagnosis. An early diagnosis may indeed lead to someone ‘accessing care’, even that care results from a personal health budget with treatments which are not proven clinically from the evidence. The direction of this particular plan depends how far individualised consumer choice is pushed in the name of personalisation. Genetics, neuropsychologists, and pharmaceutical private sector companies wishing to monitor the modest effects of their drugs on substances in the brain all stand to capitalise on dementia in 2014, much of which out of the NHS tax-funded budget. This of course is privatisation of the NHS dementia policy in all but name. One thing this Government has learnt though is how to make a privatisation of health policy appear popular.

Despite corners being cut, and the drive to do ‘more for less’, it will be quite impossible to avoid making a correct diagnosis in individuals thought to have a dementia in the right hands. A full work-up, though the dementia of the Alzheimer type, is the most common necessitates a history of the individual, a history from a friend, an examination (e.g. twitching could be associated with the motor neurone disease variant found in one of the frontotemporal dementias), brain scan (CT/MRI/PET), brain waves (EEG), brain fluid (cerebrospinal fluid), bedside psychology, formal cognitive psychological assessment, and even in some rarely a brain biopsy (for example for variant Creutzfeld-Jacob or a cerebral inflammatory vasculitis).

Analysis by paralysis is clearly not desirable either, but the sticking point, and a blurred line, is how England wishes to combine increasing diagnostic rates; and making resources available for post-diagnosis support; making resources available for the diagnosis process itself including counselling if advised. As the name itself ‘dementia’ changes to ‘neurocognitive impairment’ under the diagnostic manual DSM in 2015, the number of people ‘with the label’ is likely to increase, and this will be ‘good news’ for people who can capitalise on dementia. The label itself ‘neurocognitive impairment’ itself introduces a level of blur to the diagnosis of dementia itself.

The general direction of travel has been an acceleration of privatisation of dementia efforts, but this to be fair is entirely in keeping with the general direction of the Health and Social Care Act (2012). A major question for 2014 is whether this horse has now truly bolted?