Shibley Rahman

Trivialising dementia – too much inappropriate rocking of the boat?

Shibley Rahman 1 Comment

When I wrote my highly successful book, “Living well with dementia”, using the phrase deliberately from the 2009 English dementia strategy document for England, I never knew the phrase was being bastardised so much for often very trivial initiatives in dementia.

On the other hand, I had huge delight in seeing its immediate relevance to a carers’ support group I went to last week.

I feel deeply hurt that the serious issues in my book, such as advocacy for mental capacity, the presentation of the cognitive neurology of the dementias, or the use of ambient-assisted technology have not been widely discussed amongst the wider community.

In that, I feel the book has failed.

I welcome proposals for the next Government to maximise money into actual service, and to re-establish health funding in line with other comparator countries.

Commissioning in dementia is now not based on what is best for the person for the person with dementia, but what is best for your Twitter commissioner friends.

I look forward to the Health and Wellbeing Boards playing a pivotal rôle in establishing some sort of normality for what commissioning in living well with dementia might be as a value-based outcome.

The strangehold of “shiny”, “off the shelf” “innovative packages”, in the drive for the current Government to ‘liberalise’ the financial market in dementia has acted for a cover for disturbing, unacceptable cuts in dementia service provision in the last few years.

I remember ‘boat rocking’ the first time around from the elegant work of Prof Debra Meyerson.

I do not wish to promote frontline professionals, many of whom have spent seven years at least at medical school or in their nursing training, to become lambs to the slaughter in the modern NHS and social care.

Keeping it real, we know that real frontline professionals in medicine and social care, even if they are not in a downright toxic environment requiring whistleblowing, can find it dangerous being risk appetitive.

Indeed, being risk appetitive, while great for innovation and leadership, can literally be deadly for patient safety.

The next Government has enough on its hands with enforcing care home standards and sanctioning for offences against the national minimum wage for paid carers as it is.

We have to think for a second for the vast army of paid workers in the NHS, as well as the rather well paid people who like their shiny new boxes, I feel.

The schism between the social media and what is happening at service level I think is most alarming, and perhaps symptomatic about how the health and social care services have begun to work in reality.

All too often, I am having first hand experience of busy frontline nurses being dragged in front of entrepreneurs in their local dementia economy to hear shills beginning, “I don’t have first hand experience of caring in dementia, but…”, before the hard sell.

This is tragically being reflected on the world stage too, though I do anticipate that the G7 legacy event from Japan which is looking carefully at their experience with care and support post diagnosis, next year, will be brilliant.

It is important for leaders in dementia to have authenticity.

I have severe doubts and misgivings about what gives the World Dementia Envoy the appropriate background and training in dementia for him to be in this important post.

It is all too easy for ‘thought leaders’ in corporate-like medical charities to have no formal qualifications or training in medicine, nursing, or social care, and opine nonetheless about weighty issues to do with policy.

I am concerned that the global ‘dementia friendly communities’ policy plank appears to have been straightjacketed through one charity in England, when it is patently obvious that various other charities such as the Joseph Rowntree Foundation have made a powerful contribution.

The media have largely not engaged in a discussion about living well with dementia, but engaged simply with Dementia Friends or a story arising out of that.

I am alarmed about the lack of plurality in the dementia research sector.

I think the All Party Parliamentary Group (“APPG”) for dementia have done some valuable work, but their lack of momentum on specialist nurses including Admiral nurses, spearheaded by the charity Dementia UK, seriously offends me.

I am sick of how the notion of ‘involvement’ of people with dementia has been abused in service provision mostly, although I am encouraged very much by initiatives such as from DEEP and Innovations in Dementia.

I think there have been genuine improvements in engaging people with dementia in research, through a body of work faithfully peer-reviewed in the Dementia Journal looking at heavy issues such as the meaning of real consent.

I am now going to draw the line of tokenistic involvement of people with dementia to front projects without any meaningful inclusion.

And in fairness, this tokenistic involvement is, I am aware, happening in various jurisdictions, not just England.

All too often, “co-production” has become code for ‘exploitation’ rather than ‘active partnership’.

The prevalence of dementia is actually falling in England, it is now thought.

The ‘dementia challenge’ was our challenge to making sure that we adequately safeguarded against people rent seeking from dementia since 2012.

In that, I think we have spectacularly failed.

I am overall very encouraged, however, with the success of the huge amount of work which has been done, including from the highly influential Alzheimer’s Society, and from the communitarian activism of “The Purple Angels”.

All this ‘radicalism’ has taken on a rather ugly, conformist twang.

radicalism

Now is though time to ‘take stock’, as Baroness Sally Greengross, the current chair of the APPG on dementia, herself advised, as the new England dementia strategy is being drafted ahead of the completion of the current one in March 2015.

The references for chapter 1 of my book on prevention/risk factors in dementia

Shibley Rahman 0 Comments

These are the references to Chapter 1 “Introduction”, mainly an overview of English dementia policy, prevention and risk factors, for my new book, “Living better with dementia: championing change for the future” (to be published early 2014).

 

Websites

“Call to action: the use of antipsychotics for people with dementia” http://www.institute.nhs.uk/qipp/calls_to_action/Dementia_and_antipsychotic_drugs.html

 

A letter to the Prime Minister charting progress on the Prime Minister’s Dementia Challenge (dated 7th May 2014). https://s3-eu-west-1.amazonaws.com/media.dh.gov.uk/network/353/files/2014/05/10092-2902335-TSO-Dementia-Letter-to-PM-ACCESSIBLE.pdf

 

All Party Parliamentary Group (APPG) on dementia. (2012) Unlocking the diagnosis: the key to improving the lives of people with dementia http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1457 (dated June)

 

Dementia 2013: The hidden voice of lonelineness http://www.alzheimers.org.uk/dementia2013

 

Dementia Roadmap. http://dementiaroadmap.info

 

Department of Health (2012) Prime Minister’s Dementia Challenge: delivering major improvements in dementia care and research by 2015 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

 

Making a Difference in Dementia: Nursing Vision and Strategy https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/147956/Making_a_Difference_in_Dementia_Nursing_Vision_and_Strategy.pdf

 

Memory Services National Accreditation Programme (Royal College of Psychiatrists) http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/qualityandaccreditation/memoryservices/memoryservicesaccreditation.aspx

 

NHS Confederation website/NHS Voices blog. (2014) A people-centred response to the 2015 Challenge is vital for the future of health and care, says Jeremy Taylor, http://www.nhsconfed.org/blog/2014/06/a-people-centred-response-to-the-2015-challenge-is-vital-for-the-future-of-health-and-care

PM Challenge on dementia (Alzheimer’s Research UK) http://www.alzheimersresearchuk.org/news-detail/10688/PM-Challenge-on-Dementia-a-year-of-progress-and-new-promise-for-research/ (dated 15 May 2013)

 

Public Health England and UK Health Prevention First (2014). The Blackfriars Consensus on promoting brain health: reducing risks for dementia in the population http://nhfshare.heartforum.org.uk/RMAssets/Reports/Blackfriars%20consensus%20%20_V18.pdf (“Blackfriars Consensus Statement”)

 

Rahman, S. (2014) “It’s time we talked about ‘dementia friendly communities’” Living well with dementia blog, http://livingwelldementia.org/2014/03/25/its-time-we-talked-about-dementia-friendly-communities/ (25th March 2014).

 

Report on the prescribing of anti-psychotic drugs to people with dementia (author: Professor Banerjee) http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303 (November 2009)

 

WHO (2013) [ed. Wilkinson, R., Marmot, M.] Social determinants of health: the solid facts. http://www.euro.who.int/__data/assets/pdf_file/0005/98438/e81384.pdf

 

 

 

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Rissman, R.A., Staup, M.A., Lee, A.R., Justice, N.J., Rice, K.C., Vale, W., Sawchenko, P.E. Corticotropin releasing factor receptor-dependent effects of repeated stress on tau phosphorylation, solubility, and aggregation, Proc Natl Acad Sci USA, Apr 17, pp. 109(16):6277-82.

 

Ritchie, C.W., Ritchie, K. (2012) The PREVENT study: a prospective cohort study to identify mid-life biomarkers of late-onset Alzheimer’s disease, BMJ Open, Nov 19, pp. 2(6).

 

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Source of the graphic in the top left corner of this page is here.

‘Whole person care’ has been done by family doctors for years. We do not need yet more managerial silos.

Shibley Rahman 0 Comments

neuroimaging

“No matter how busy you are, you must take time to make the other person feel important.” -Mary Kay Ash

People living with dementia are generally not kept ‘in the loop’ about major decisions in the running of their health and social care services.

Whereas some politicians clearly see some capital in promoting dementia, it is hard to distinguish whether this is a genuine interest in dementia or a need to act as a broker for the pharmaceutical multinationals.

Likewise, ‘whole person care’ has all the makings of a great slogan, raising expectations beyond a reality. The concept is, irrespective of funding mechanisms in various jurisdictions, is that you see beyond a list of clinical diagnoses.

You ‘take notice’ of a person when they’re not ill; this has become a very potent concept with realisation that many people live with conditions but are not symptomatic of any illness. And more than ‘taking notice’, you actively help with issues that can help with wellbeing (such as lifestyle, advice about enforcement of legal rights, good quality housing, access to appropriate benefits, proper design of the environment.)

My working definition of ‘personhood’ is somewhat more basic than that of Carl Jung and Tom Kitwood, whose feet I should never wish to tread on intellectually. But my definition is simply that any person living well is at ease with his or her own past, present and future, and his or her environment including community.

In my view, therefore, it is refutable that there are sources of expertise for whole person care outside the medical profession, including unpaid carers, nurses, occupational therapists, physiotherapists and speech and language t harpists, as well as other persons with dementia.

Health and social care in England currently feels like fragmented different worlds, with a complete lack of communication between them. The lack of continuity of care leads to operational problems in offering health and social care. And if you reduce people to a list of diagnoses, you ignore the past of that person.

For example, a concert pianist might have rather different views about developing rheumatoid disease in his fingers than a building site construction worker has about developing the same disease in his.

What is driving the cost of the NHS budget in England, however, in England is technology not the ageing population; half of England’s current NHS budget goes to people below the age of 65 (Iliffe and Manthorpe, 2014).

There is an important how it could be delivered. An anticipated problem is that how the ‘integrator’ will include services including the private sector as well as possibly community care units; in this rôle the integrator ends up subcontracting services, potentially subverting the original ethos of the CCG process. This is a recipe for fast tracking resources away from the State to the private sector, highly dependent on corporates acting like ‘good citizens’.

Certainly, electronic patient records shared between entities would help.

But there is a temptation, and indeed danger, that ‘whole person care’ becomes a wish list for multinational corporations; e.g. “big is best” and implementation of massive IT projects. Focusing on a person’s beliefs, concerns and expectations, however, has been done successfully for decades by many family doctors, who have been subject to the same principles of regulation over confidentiality and disclosure as relevant to IT systems. By this I mean family doctors who spent ages talking to persons and their families in various environments such as home visits, rather than doctors in modern general practice guillotined by the seven minute time slot.

The current UK Labour opposition is wishing to implement ‘whole person care’ in its next government, and it of course it remains to be seen whether they will be given a mandate for doing so.

But, if so, policy has a delicate balance to run between recognising specialist clinical care in dementia, e.g. through Admiral nurses, in England, and not creating new “silos”, e.g. whole person care nurses in dementia.

Creation of new silos from management and management consultants, apart from all else, encourages insurance-based funding mechanisms for single diseases rather than mechanisms which encourage fair treatment of the whole person in an equitable way.

The strength about the ‘whole person care’ construct is that persons have their physical health, social care and mental health needs considered in the round, with an understanding that comorbities can act both ways: physical illness can cause mental illness, and vice versa.

Whilst it might seem like an experiment in England, and could not have come at a worse time for the NHS with campaigners feeling that changes in health policy are essentially a rouse for backdoor privatisation, the approach of ‘whole person care’ is particularly relevant to dementia, and other jurisdictions, for example California, have already made good progress with it.

 

 

Living well with dementia: Happy by Pharrell Williams

Shibley Rahman 0 Comments

My close friend and colleague, Kate Swaffer, wrote an article this morning in Australia on being diagnosed with dementia vs ‘suffering’.

I strongly recommend it to you here.

This was an exchange of ours this morning on Facebook.

This topic has always caused heated exchanges for all of us.

I hope you can bear with us, as none of us mean any offence in this.

I think part of the issue is that, further to ‘once you’ve met one person with dementia, you’ve met one person with dementia’, our different views of that person with dementia can vary quite widely too.

Our discussions of ‘Living well with dementia‘ continue..

 

Comments

“Happy”

[Verse 1:]
It might seem crazy what I’m about to say
Sunshine she’s here, you can take a break
I’m a hot air balloon that could go to space
With the air, like I don’t care baby by the way[Chorus:]
Because I’m happy
Clap along if you feel like a room without a roof
Because I’m happy
Clap along if you feel like happiness is the truth
Because I’m happy
Clap along if you know what happiness is to you
Because I’m happy
Clap along if you feel like that’s what you wanna do[Verse 2:]
Here come bad news talking this and that, yeah,
Well, give me all you got, and don’t hold it back, yeah,
Well, I should probably warn you I’ll be just fine, yeah,
No offense to you, don’t waste your time
Here’s why

[Chorus]

Hey, come on

[Bridge:]
(happy)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said (let me tell you now)
Bring me down
Can’t nothing bring me down
My level’s too high
Bring me down
Can’t nothing bring me down
I said

[Chorus 2x]

Hey, come on

(happy)
Bring me down… can’t nothing…
Bring me down… my level’s too high…
Bring me down… can’t nothing…
Bring me down, I said (let me tell you now)

[Chorus 2x]

Come on

Norman (@norrms)

Kate (@KateSwaffer)

“The Alzheimer’s Show” tomorrow and Saturday: my competition

Shibley Rahman 0 Comments

I’m going to the Alzheimer’s Show tomorrow and on Saturday (Friday 15th May and Saturday 16th May 2014) in London Olympia. I am looking forward to seeing and chatting with many of my friends there.

I quite like the approach of the show as it is accessible to people with dementia as well as people who help to support people living with dementia.

The show’s official flier can be downloaded off their official website.

There’ll be over exhibitors including care at home, care homes, living aids, funding, legal advice, respite care, complementary therapies, training, telecare, assistive technology, charity, research, education, finance and entertainment.

You’ll get a chance to be a “Dementia Friend“.

I have written about the five key messages of “Dementia Friends”, as my PhD was successfully awarded in the cognitive neuropsychology of dementia at the University of Cambridge.

My slot – “Meet the author”

I’m thrilled to be doing a half an hour slot called ‘Meet the author': details here.

My book is called “Living well with dementia”. It also happens to be the name of the current five-year English dementia policy, about to be renewed.

I11

(@mrdarrengormley and I)

It has had many positive reviews, including from Prof John Hodges, a leading international expert in all dementias, including frontotemporal dementia.

I was especially honoured to receive this book review from the prestigious ‘Nursing Times‘.

I feel very strongly that living well with dementia must be a critical plank in the renewed English dementia policy, whichever party/parties come to power on May 8th 2015.

As I explained in my short article in the “ETHOS” journal, living well with dementia is perfectly understandable in the context of integrated care or whole person care.

There’s no doubt that values-based commissioning, promoting wellbeing in dementia, should be a core feature of English health policy in the near future. I discuss one application here in the Health Services Journal recently.

My competition

To be eligible you will need to be at the Alzheimer’s Show on one of the two days to pick up your prize.

Required:

Simply respond to the following –

Tweet

 You must tweet this by the day on which you intend to be at the Alzheimer’s Show.

Updated plan for my new #dementia book – comments very welcome

Shibley Rahman 0 Comments

The aim of this book is two fold

1. First to hoover up topics I didn’t properly address the first time around in my book ‘Living well with dementia‘.

lwd.jpg

2. To try to cover the more common themes in various guises of  ‘Dementia Champions’ courses held in England.

 

I would be extremely grateful for any topics in the list you’d like me to focus on.

Like Matisse’s artwork, living well with dementia is a triumph of hope over pessimism

Shibley Rahman 1 Comment

You can feel it from start to finish.

Matisse is innovation all over.

It’s about experimenting.

It’s about not being frightened of failure.

It’s about not worrying what people think of you.

It’s about cracking a few eggs to make an omelette.

It was a delight to go to London SE1 “Tate Modern” to see “Henri Matisse: The Cut-Outs” this afternoon.

A dementia expert is reputed today as saying that Alzheimer’s disease impacts ‘not only color, awareness and your ability to process [things] but also your field of vision.’

‘By then your brain says “I can’t deal with this data coming from two eyes” and it says “I’ll just pay attention to one.”

‘You lose all depth of perception, you’re not able to figure out [if things are] three-dimensional or two-dimensional.’

And indeed it’s scary stuff.

I am unable to bring you the image as it would be a breach of copyright.

I object very strongly to these scare tactics.

But they’re utterly in keeping with the “timebomb” school of reporting of dementia.

The facts are as follow.

Vision is not affected in early Alzheimer’s disease as the part of the brain which is typically affected are the hippocampus and entorhinal cortex, a part of the brain near the ear.

The visual areas are somewhere completely different.

Alzheimer’s disease is the most common type of dementia worldwide, though there are about 100 different types of dementia.

There might be a case for saying vision is affected in some other types of dementia, for example visual hallucinations in diffuse lewy body disease or in 3D visual perception as in posterior cortical atrophy.

But this is completely different.

The advertising campaign is in fact disgusting, but entirely in keeping with how corporate-behaving charities can resort to shock-doctrine type tactics.

In contrast, Matisse is a triumph of hope over pessimism.

Matisse 1Matisse 2Matisse 3Matisse 4

It’s brilliant that, while Matisse’s own movement was severely limited, in “The Acrobats” he was able to depict bodies in extremes of motion.

The assistants would clamber around the giant pictures with pin cushions and hammers, realising Matisse’s vision.

The colour was sensational, at a time when this was not the “done thing” in art at the time.

In fact, Matisse epitomises everything which the doom-mongers, sometimes ably assisted by some dementia charities and the media, portray dementia to be.

Living well with dementia for me is about the assets-based approach.

It’s about celebrating what people can do as individuals, rather than what they can’t do.

It’s not about propelling our fellow citizens into an early grave.

I know which world I prefer to inhabit.

Tomorrow, hell freezes over as I attend my first conference on dementia since 1999

Shibley Rahman 1 Comment

I have famously said, “All hell will freeze over before I attend a conference in dementia”.

freezing hell

Well, actually, tomorrow is the day that theoretically all hell freezes over.

I will be taking the train in the afternoon to go from London Euston to Glasgow Central.

It is in fact a very highly emotional journey for me. I was born in Glasgow on June 18th 1974. I am very loyal to my Scottish friends, as I have very happy memories of Scottish people. I remember thinking, at the age of five, how relatively unfriendly people in London were, when I moved down South.

I have been meaning up with Dr Peter Gordon for ages for this. Peter’s to be found on  Twitter as @PeterDLROW.  If you’re wondering “why DLROW?”, the answer is simple.

About 20 years ago, I used to administer myself the Folstein Mini Mental State Examination (MMSE) and one of the questions famously is “Spell the word “WORLD” backwards”. The full (abbreviated) MMSE is here.

For a few weeks, I have been meaning to take a break from tradition of usual slagging of conferences of dementia, which I’ve disparagingly called ‘trade fairs’, mainly because I’ve never been invited to them. This came to a head recently when I was fuming that nobody considered me good enough to invite me to #NHS #InvExpo14 (see blogpost here), and I was subjected to a torrent of tweets saying they were having such a nice time there.

My stance of railing against every single exhibition was scuppered when this conference in Glasgow came up. As per usual, nobody bothered telling me they were going. I only found out by complete accident. The organisers have even allowed me to show my book to everyone out of goodwill as they feel the book promotes research into wellbeing in dementia (which it does). I’ll be giving out my survey of #G8dementia to about 130 other academics, which asks searching questions about their perspective of the perception and identity of the #G8dementia conference held last year.

It’s known I have a longstanding interest in dementia. I’ve written a book called ‘Living well with dementia’, which is not easy for me to promote at all. I am simply lucky that I have been blessed by good friends such as @WhoseShoes who’ve been battling for me against all the odds. @WhoseShoes’ incredible biography on the day of launch is here. Indeed, @KateSwaffer and @norrms have been very supportive too, which is why I continue to hold the untenable thought that my book will one day influence policy.

But my friends have been AMAZING. This was @dragonmisery‘s mention of my book  on the influential ‘Dementia Challengers’ website about recommended  books. And @BethyB1886 has been wonderful too – here’s my mention.

In fact, I’ve been working on dementia long before CEOs or directors of research in dementia charities appeared on the scene. I did my Ph.D. in Cambridge, and my Brain paper in Brain is appreciated to be a seminal contribution to the field (and is in the current Oxford Textbook of Medicine).

ABuns1907

I think the world of Prof Alistair Burns (the clinical lead for dementia in England). I have given Prof Burns and Prof Sube Banerjee, the previous leader in dementia and an expert in wellbeing, a copy of my book. In fact, I am delighted that Prof Martin Rossor is intending to read my book too. Martin, for anyone of us lucky enough to have across his work, is simply outstanding. I am thrilled he has been appointed by the Chief Medical Officer as NIHR Director for Dementia Research.

I have become very pro-patient, particularly out of my disillusionment with what I perceive to be a failure of the medical model for people with dementia. I think at worst people end up with a label, attend outpatients every few months to get told whether their brain scans or cognitive testing have changed, and the medications have little efficacy for many in treating symptoms or altering progression. It was on seeing how my late father had to cope with excruciating back pain that I had an ‘epiphany moment’ of wishing to write a book which produced a synthesis of the notion of living well with dementia.

It is in fact a very far cry from my original published work on the drug treatments of dementia in prestigious international peer-reviewed journals: methylphenidate (ritalin) published in Nature Neuropsychology, and paroxetine (seroxat) published in Psychopharmacology, for patients with frontal dementia. But I’ve become acutely aware of false claims from Big Pharma about dementia, and the hysterical reporting of dementia by some in the light of  the Prime Minister’s Dementia Challenge. I remember reviewing the failures of these treatments as far back as 1999 for a chapter for a multi-author book edited by Prof John Hodges on early onset dementia. And the promises from Big Pharma and the dementia fundraising charities have not changed one jot.

So, now, I am finally feeling inspired to share some of my academic passion about dementia with others. I have had to conceal this passion for so long, but I think things came to a head when I witnessed people whose backgrounds were not in medicine, nursing or dementia making such a Horlicks in basic facts concerning dementia.

Still I suppose we’re all #inthistogether. But to varying depths.

My name is Shibley, and I’m addicted to buying my own book ‘Living well with dementia’

Shibley Rahman 0 Comments

I’ve sat in more recovery sessions than you’ve had hot dinners….

.. possibly.

So I get a surge of dopamine whenever I receive yet more copies of my book from Amazon.

Worth every penny.

Packaging

I am Shibley. and I’m addicted to buying my own book.

in a circle

But I also have a weird habit of getting people I know to sign my copy of my book.

I get withdrawal symptoms from not having enough copies.

I also get tolerance – I need to have an increasing number of copies to get the same “kick” from my book.

Thanks enormously to the following ‘well wishers’, though, who have signed my book.

A huge thanks to Gill  (@WhoseShoes) for her unflappable support of me and my book.

Here’s Gill’s blogpost.

And here we are!

GS

I felt very happy to give a copy of my book to Prof Sube Banerjee, newly appointed Chair of Dementia at Brighton and Sussex Medical School. Sube has in fact been the lead for England for dementia – his work is quoted in my book, and I think he’s made an enormous contribution to the living well with dementia literature.

Sube

And what does the future hold for ‘living well with dementia’?

Other ‘signatories’ include:

@RichardatKF

Richard Humphries

@lisasaysthis

I’ve known Lisa for yonks on Twitter. Lisa is one of the few people who’ve supported me through the bad times too.

Lisa

@crouchendtiger7

CrouchEndTiger

@ermintrude2

ermintrude3

@mrdarrengormley

Darren

But now you can ‘Look Inside’ to get a flavour of my book – as there is now a Kindle edition (thanks to Alice in my book publishers @RadcliffeHealth)

Here it is on Amazon.

Look inside

Here is a sample chapter from my book ‘What is living well?’

‘Living well’ is not some bogus mantra for the hell of it. It is an ideological standpoint which serves to promote the dignity of our fellow citizens who happen to also have a clinical diagnosis of dementia.

And here are the “beautiful people” who came to my book launch at the Arlington Centre, Camden, one afternoon in February. I can’t believe that this wasn’t even a month ago now!

Book launch

One of the happiest days, as well, was giving Joseph a copy of my book as a gift.

Joseph
Joseph was in fact my carer when I could hardly walk or talk, when I was in physical recovery from meningitis on ITU (where I was unconscious in 2007).

And those were the days…

Royal Free

And THIS is the famous poppy.

This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.

the famous poppy

After I said I was buying my own copies, @KateSwaffer asked:

Klaws

But Kate has read a copy of my book from cover to cover:

And as @Norrms says – how can ‘living well with dementia’ fail?

Living well with dementia – lessons for ‘whole person care’

Shibley Rahman 2 Comments

There were of course huge structural problems in the much heralded Oldham report on whole person care was published this week.

It’s officially called ‘One Person, One Team, One System‘.

These structural problems are, not least, to what extent will the NHS be paid for out of general taxation in the long term. The issue is not fudged altogether, in that Oldham calls for a future government to look into this as a priority.

Nonetheless, the Oldham Commission does fudge the issue of how much integrated and social care systems can rely on private not state provision. This is a strange ‘elephant in the room’, given the emphasis of the report on individualised budgets (call them what you will, personal budgets or personal care budgets).

Oldham does however concede helpfully that ‘financial arrangements in the adult social care system are equally fragmented, with complex and overlapping funding and provision arrangements between private and public funding sources, and private and public providers of care. The multitude of private care providers adds to this complexity.’

The need to repeal section 75 Health and Social Care Act is pivotal to all this. In fact, a repeal of the whole Act, as Labour (as Andy Burnham and Ed Miliband have indeed promised), would be helpful. This is, quite simply, because legally integration might offend the competition legal infrastructure established by section 75 and its associated Regulations, and of course sit uneasily with EU competition law.

At the moment, the NHS and social care services are geared up to ‘reacting to events’. And this is reflected in the payment by results mechanism (a reincarnation of ‘activity based costing’).

“Public funding has increasingly focused on those with greatest needs – particularly as rationing of care has become more severe – driven by a reactive, crises oriented approach rather than a focus on early intervention and wellbeing.”

Wellbeing is of course not just the opposite of illbeing, though lessons can be learnt from poor hydration and nutrition, for example, in individuals with advanced dementia.

The Oldham Commission view health and wellbeing boards as a vehicle for collective system leadership for whole person care,” involving the leaders of existing organisations working together to coordinate care and align incentives across their geography.” And therefore it is critically important that they are fluent in what wellbeing is, and how to promote it. This is especially important for dementia, but I would say that wouldn’t I.

Information is obviously vital in decision-making along a path to wellbeing however defined. I, in fact, devote a whole chapter to decision-making in my book ‘Living well with dementia’.

Decision making flowchart

The exact mechanism of integration of voluntary organisations and health and care services to provide a combination of medical and non-medical support as part of the care pathway for older people living with multiple long term conditions needs of course to be put under greater scrutiny.

The ‘deal‘ between the Department of Health and the Alzheimer’s Society in promoting ‘Dementia Friends’ is of course welcome in promoting awareness of dementia. But we do need to be careful that, firstly, other dementia charities do not suffer in a ‘zero sum gain’ manner. Secondly, we need to be doubly sure that charities are not expected to pick up any shortfall in state provided services. Already there’s valid criticism of the way in which private companies can legitimately ‘cherry pick’ services to maximise their shareholder dividend.

Oldham’s group is right to refer to “a strong evidence base now exists to target key risks to health independence and wellbeing in old age.” Clearly there’s a balance to be struck between independence through assistive technologies perhaps of persons living with dementia in their own homes, and social inclusion with other persons face-to-face. Online communities offer great value for persons with dementia nonetheless.

Oldham’s team also helpfully reviews how Preventive aspects of whole person care must therefore pay attention to environmental factors. The emphasis in the Report is on diet, but this is valid too for dementias in the context of vascular dementias. Vascular dementias are common in older age groups, and certainly medical professionals, dieticians and others are keen at considering cholesterol and diet, and their interaction with other factor such as smoking.

Therefore, one of the conclusions is that, “Whole person care should not only include joining up services …”

It is inescapable that whole person care should include ‘joined up services’. Data sharing different disciplines, despite the concerns about #caredata, needs to involve a more effective dialogue with the general public, one expects.

The report also picks up on a number of other important issues.

One is the possible interaction with benefits. People with disabilities, for example, are right to wonder if benefits might be taken away if the system drives towards ‘whole person care’. On the other hand, it does not perhaps make intuitive sense for the care and benefits situation to work in isolation?

This is of course an intense political quagmire, given ATOS’ role in both the GP extraction scheme and the implementation of the much criticised disability and employment benefits.

Also, it turns out that 70% of people over 75 live with a major long term condition and a quarter live with two or more. Many persons living with dementia also live with otherconditions.

Furthermore, the Report notes that, “in all groups in society, housing has a large impact on people’s health and wellbeing.” As perhaps care embraces personhood in the true meaning of Kitwood or otherwise, the influences of other people in society, such as housing or the criminal justice system to name but a few, may become apparent.

But what the State is by that stage is anyone’s guess. In the meantime, the Oldham Report is fully consistent with my book ‘Living well with dementia’.

I had expected this to be the case. In fact, there’s a paragraph on whole person care in my book.