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Why I shudder when I hear the term 'person centred care'

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When I was doing my junior medical rotations, in preparation for the clinical examinations for the Royal Colleges of Physicians, there would always be the scary assessment of ‘communication skills’.

This is long before the time of the current #mynameis campaign in the NHS.

Having introduced yourself to the patient, one of the first things you’d be examined on is your exploration of the patient’s “beliefs, concerns and expectations.” The aim of the medical consultation was to prepare a management plan, given the time constraints, given these aspirations from the patient.

In reality, we all know the nonsense of being able to deal with all of a patient’s issues within a ten minute timeframe. People living with conditions, such as dementia, have had long time to reflect on the nature of their conditions and how impact on their lives.

The power imbalance in the doctor-patient relationship, I do not wish to deny, can potentially be a problem. For an example a medical patient’s wish to ‘live better with dementia’ can easily become a GP’s wish to solve a problem (s)he thinks (s)he can solve – like a modest improvement of memory through a drug.

For example, I violently object to Doctors seeing people as nameless entities, with no background, simply as a list of medical problems.

In life, I believe strongly we should actively seek out what people can do too.

Ultimately, I feel we are all persons, and that we become patients when we become ill. I think personhood is all about embracing a person’s past and present, and his or her relationships with everyone else; this should have been an aim of healthcare professionals all along.

I happen to be proud of being  a ‘Dr’ only because I endured (so I perceived) quite a lot of stigma from being banned from the Medical Register during my problems consequent upon alcohol abuse. In fact, I deliberately avoided calling myself ‘Dr’ even though I knew I was perfectly entitled to, on the grounds of having completed a doctor of philosophy (“a real Doctorate”).

In hospitals, it can be useful also to be a ‘Dr’ to save a lot of time. I am only saying this as I have seen circular discussions on ‘abolishing hierarchies’ in the “new model NHS”, and I can say for a fact that I never had an ‘attitude’ from being any sort of Doctor. In hospitals, it can be useful for patients to differentiate yourself from other health professionals.

With being a Doctor comes a lot of baggage too, like always being on best behaviour 24/7 outside of your job, or not giving any advice to complete strangers despite people asking for advice. That is, rather, an honour of professional regulation.

But I feel that the term ‘person centred care’ requires explanation. If it is not patient centred, what else is the healthcare system revolved around?

It could be “relationships” centred, and this takes away the rather individualistic approach. Or it could be “family centred”, in that you can make decisions jointly and severally with whole families. But no terms are ideal – some people can have few relationships, and/or no family.

However you define ‘person centred care’, it is not only liable to being a bandwagon, but liable to be a performance reductionist metric imposed by non-professionals on professions to ‘improve quality’, when the whole world knows that many healthcare professionals desire time, space and resources do the job.

When I chat with a friend of mine living with dementia I do not see as ‘person centred care’, merely just being a good support hopefully. Likewise, if we have ‘dementia friendly communities’, I genuinely wonder who else we are being friendly or unfriendly to.

It’s become dreadfully easy for ‘person centred care’ to trip off the tongue.

But a few basic ‘messages’ somehow appear to have become drowned out – such as health and wellbeing not merely the absence of illness.

Kate Swaffer once joked about ‘purse centred care’ in a now seminal article “There is Big Money in dementia” (click here).

And after all you can set your criteria for your brand of purse centred care is like, trademark it, flog it; but this would defeat the whole ethos of the intentions of the work of Tom Kitwood.

Whatever “person centred care” is to managers or others, we don’t seem to be doing a good job in achieving it according to the Health Foundation. We all have different takes on the notion. As with anything else, I suspect, however, too many cooks spoil the broth.

 

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"A community where we're nice to everyone? It might catch on."

The word ‘friendly’ in the term “dementia friendly communities” defies definition. At the very worst, it has a twang of “does he take sugar?” about it.

The reasonable question which most of us have thought about is why focus on people with dementia? This from a commissioner’s perspective is a worthy one – why not “depression friendly communities” or “first episode psychosis friendly communities”?

It is indeed curious how much friendliness can be compatible with division.

Take for example the historic segregation in Cape Town, South Africa. It is argued that racial segregation was facilitated by spatial urban planning which imposed natural boundaries such that the centre could be a ‘white only’ zone.

The whole history of how segregation was achieved this way is described succinctly in an article.

spatial planning

It’s possible, though I do not know the precise findings, that people who are of the same colour tend to live together. This has of course been the subject of many previous discussions, often heated, about whether we truly live in a ‘multicultural society’.

Even beyond this traditional segregation, even in a society which allegedly has accepted differences, as say defined by the protected characteristics under equality legislation, it is possible for tacit division still to persist.

For example, a blogpost recently boasted of destinations which were particularly friendly to the ‘young black professional‘.

Where am I heading with this? I am simply saying that cultural divisions can exist even if protection is enforced within the law. I have referred to this as ‘moral rights’ because for legal rights to exist they need to be part of the law (either common law or in statute) first. Racial discrimination was abhorrent, many feel, before formally legislated upon.

This has all come to the fore with the issue of ‘rights based approaches’; that everyone has legal human rights, which protect dignity, and right to a private life, and protect from discrimination.

The problem with any law is that the law is only as effective as how well it is drafted, or how it is enforced. For example, the lack of efficacy of the national minimum wage has in large part been to lack of effective enforcement, it has been argued.

I feel ‘standards’ for dementia friendly communities are helpful, such as those from the Alzheimer’s Society, otherwise the term itself is open to abuse.

But it is important to be clear about what a dementia friendly community is definitely. Lack of inclusion of an obvious issue in this quasi-legal framework could render it seemingly unimportant.

For example, some ‘gay friendly cities‘ have been defined thus: “Publications like “The Advocate” base their annual rankings on criteria like the number of LGBT elected officials and protective policies and legislation, as well as the community’s level of participation in gay friendly sports, competitions, and social groups. ”

And indeed it is currently a “right”, under the UN Convention for Rights of People with Disabilities, for people with disabilities (however defined) to have proper democratic representation.

For example, article 29 defines a right to be included in political and public life, including an encouragement for “participation in public affairs”.

Should not a World Dementia Council have included from the start a person living with dementia who was democratically nominated onto that panel? Surely that comes under dementia friendly communities?

The alternative is that we do treat everyone equally, with kindness.

“A community where we’re nice to everyone? It might catch on.”

 

 

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Pharma can have an important rôle to play for dementia, but we should not be afraid to ask what

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It’s a pretty big ask to call for ‘a cure for dementia by 2025’.

But I was thinking of it from the other perspective. What if there were ‘a cure for dementia’? Should one be ungrateful to all the world leaders, other politicians and various stakeholders for giving such prominence to this initiative?

Medicine is a funny old game. Patients ideally want certainty, not a diatribe of qualifications on what their diagnosis might be.

But, say, with the introduction of clearer genetic information, we’re now realising that many of the dementia presentations appear as a spectrum.

For example, the ‘semantic dementia spectrum’ conditions contain a mélange of different presentations of specific dementia conditions involving language, and a person may not easily fit into one diagnostic category.

Frontotemporal dementia contains a group of conditions which affect the frontal (front) and temporal (near the eye) parts of the brain. But it is not uncommon for doctors to revise their diagnosis that what they thought was predominantly ‘a frontal presentation’ turns out to be a ‘temporal presentation’, depending on the involvement of behavioural changes.

Dealing with uncertainty is an issue most of us feel uncomfortable with. Greater certainty is given for a dementia diagnosis following a person with time; the greatest certainty is offered post mortem, it might be argued.

In this ‘now generation’, it is not good enough for people to be languishing without a diagnosis. But I feel this diagnosis has to be in the right hands. It is a travesty to give someone a diagnosis when he or she does not live with a dementia; likewise it is a travesty to deny someone of a diagnosis.

We should be able to ask earnestly for more resources for primary care, if we wish them to be more confident about making the diagnosis; otherwise it is literally a case of leaving someone in limbo until the diagnosis is ‘sorted out’ by memory clinic sometime later.

A cure for dementia would heal some pain in providing certainty. But it is this ambition, I feel, which generates uncertainty we should confront with full transparency.

It is known that there are 47 million people living with dementia currently. What are we to offer these people even if we find a cure?

The most common type of dementia is the dementia of the Alzheimer type, with problems early on in learning, memory and attention. But will our ‘cure for dementia’ work for other dementias?

Will a ‘cure’ be a ‘cure’? Might be more accurate to say a condition is abated, in ‘total remission’, like cancer?

I find the drive for a cure for dementia interesting, as it is so poorly defined.

There are 1 000 000 000 000 000 nerve cells, all intimately connected with one another, so how for example are we going to target the pathological cells without affecting the healthy cells?

It is a brave man indeed who takes on the complexity of the human brain.

When you give a clinical diagnosis to someone, you are not only providing the diagnosis to him or her, but also his or her friends and family. Likewise, when we are building up expectations for a ‘cure for dementia’, what message are we trying to give the million or so caregivers, a majority family and unpaid, who are living with others’ dementia currently?

But likewise I think the contribution that Pharma could play in symptomatic relief for any of the dementias is not to be dismissed. Even then, one does not think of ‘curing asthma’ as we provide symptomatic relief through opening up airways through a bronchodilator, rather than some complicated intervention on the lungs.

Likewise, one does not easily think of ‘curing headache’ in that we are providing symptomatic relief by easing blood flow, perhaps, rather than some complicated neurosurgical operation on the brain?

It would be great for Pharma to be able to offer something, such as a pharmacological agent which could stop dementia in its tracks in its pre dementia stage. But we currently neither have the agent, nor the reliable identification of the pre dementia stage.

But we do have 47 million people wanting to live better with dementia – with concomitant caregivers – and it is our duty, with or without politicians, or with or without ‘Big Charity’ – to do something about that?

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Contents to my new book 'Living better with dementia: Good practice and innovation for the future'

 

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Please note that this may or may not be the final book cover.

My new book ‘Living better with dementia: good practice and innovation for the future’ will be published by Jessica Kingsley Publishers on July 21st 2015.

The information about the book is here.

This is the official ‘blurb’.

What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.

I can exclusively reveal the contents as below.

Acknowledgements

I am honoured that Kate Swaffer, Chris Roberts and Beth Britton have written the Forewords to my book: you can read them here.

This is my follow-up to my book ‘Living well with dementia: the importance of the person and the environment‘.

I should like to admit that I think ‘Living well’ is the wrong term. It potentially sets people up for a fall, if they cannot achieve someone else’s external standards for wellbeing. This is wrong. An aspiration for all people to live better, I feel, instead is a reasonable one.

 

 

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Rights-based approaches in dementia. What are they good for?

I will be responding to a Mental Health Foundation report on disability and dementia on Thursday.

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about. I was, to be honest, a bit afraid whether it was “the next big thing” in dementia policy, like “dementia friendly communities”. My concern was that it is a bandwagon, which, like the “no decision about me without me”, is prone to becoming a slogan without people looking behind the sentiment. But on closer examination, I feel “rights based approaches”, which I will call “RBA” so it sounds less threatening, has much to offer.

For a start, it has a lot to offer people living with dementia themselves – this includes all individuals who’ve received a diagnosis of dementia, and living at all ‘stages’ of their dementia. I feel the danger with “dementia friendly communities”, apart from the basic problems of how you define ‘friendly’ for a start (is it the same as capable? inclusive? accessible?) is that it offers more to people other than people with dementia than the people with dementia themselves. However, this policy was clearly meant to be for the benefit of the person living with dementia, such as more ‘friendly’ design, transport or housing.

But human rights, such as right to be free from degrading treatment, apply to everyone. They are inalienable; they apply to everyone. There are problems in thinking that all human rights are legal ones. It’s often cited that the offense caused by Apartheid is a moral one and pre-existed legislation. The general issue is that rights do not need to be in law to be meaningful (but it certainly helps.) The fact that they are inalienable is an extremely powerful concept – that they do not erode as the dementia progresses. The way dementia is often framed in the media and even by professionals is an insidious “dehumanising” process.

And the United Nations are deadly serious about the implementation of human rights, to the extent it has produced a Convention on the Rights of People with Disabilities. It’s also given guidance on how corporates should behave responsibly to observe human rights. The Convention on the Rights of People with Disabilities, I feel, is valuable as it adds serious teeth to what might have seemed peripheral issues, such as the democratic representation of people with disabilities.

Its ethos about everyone being equal in front of the law has serious implications for our own Mental Capacity Act. And I don’t think it is a bad thing that we are forced to think about our understanding of capacity – and what ‘happens’ when capacity is ‘lost’ in a seemingly all or nothing matter. A law is only as useful as its enforceability, but a sense of ‘rights conciousness’ gives people with dementia a sense of entitlement to standards. Of course, it is counterproductive if people use this law to be compliant to prevent complaints, rather than use this law to acknowledge certain people have legitimate legal expectations.

I feel, particularly, that a RBA offers a mechanism to campaign as a social movement. People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’. People with dementia can campaign for minimum standards in things which affect their health through constructs such as the Convention for People with Disabilities, such as in housing, education or democracy; in the same away as activism on public health brought about basic changes in sanitation in global medicine.

This should be of course a focus for public health anyway, but it is all too easy for Big Charity and governments to collude in a narrative on prevention and cure, squeezing out living well. But this prevention script is not innocuous either. A healthy lifestyle does not necessarily mean another dependency on cholesterol or blood pressure lowering drugs.

And the “pre-dementia” notion, often advocated for by Big Charity, potentially can make patients out of us all. The effect is we are all living in fear, some more than others, and ‘it’s our fault’ if we don’t do something to stop getting dementia (the “personal responsibility” narrative). A disability requires a long-lasting substantial impairment, and access to benefits on the basis of disability are de-incentivised by any simultaneous wish to ‘live well’. We get into slippery territory if we can recognise all people with ‘genetic handicaps’ over meticulous examination of their DNA through ‘Big Data’ innovations. Some people find the label ‘disability’ empowering, some disempowering, looking at the literature from all long term conditions. I personally find recognition of my physical disability ’empowering’, but each to their own?

And living better with dementia is important as it supports a move away from deficits and illness. Health is not just about an absence of illness, and people on receiving a diagnosis of dementia are entitled to lead lives in recovery akin to receipt of a diagnosis of schizophrenia. If a social movement such as ‘dementia activism’ gains traction, it’s perfectly possible this will provide further leverage, such as not seeing people with later stages of dementia being parked in residential homes. For decades, it was too easy for many individuals to be given inappropriate antipsychotic medications institutionalised like some sort of police state.

I think language is critical – and that’s why this from the Alzheimer’s Society back in 2009 did not impress me much.

PR

Victimhood is sometimes unwittingly exacerbated by Big Charity – which is why we all need to be vigilant. A RBA may help to reset the compass on this one.

In summary, I feel RBA are complementary to dementia friendly communities, and will make the weather. I think they are less reliant on codification by governments or governmental bodies, and can be ‘enforced’ in a legalistic manner, but the crucial strength in them is their ability to command a social movement for better dementia care and respect for people with dementia and carers.

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My itinerary for the Alzheimer's Disease Conference 2015

I will be presenting 3 posters and giving one talk at the Alzheimer’s Disease International conference this year in Perth.

I am looking forward to spending the two weeks hopefully in the company of, at various times, Chris Roberts, Jayne Goodrick, Kate Swaffer, Mick Carmody, Lynda Henderson, Truthful Kindness and Simone Willig; I hope of course to be seeing many others during the course of the conference.

The stay will include Perth, Ayer’s Rock, Adelaide and Sydney.

Thanks very much to the organisers of the ADI Conference. I am honoured to be on the international advisory board this year. I was pleased to recommend most of my abstracts reviewed for this year’s conference as a peer reviewer.

 

My iterinary for the 30th International Conference of Alzheimer

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"Alive inside: the story of music and memory". A film screening in Brighton on March 20th.

I always tell anyone I can meet, “Anything can happen to anyone at any time”.  I believe in persons not patients; I believe in looking at what people can do rather than what people cannot do; I believe repair is important, but so is care.

2 Shibley

Don’t let anyone fool you into thinking that the human brain is anything other than complex. There’s about 1 000 000 000 000 000 different nerve cells, some of which are connected w’ith other, but some aren’t.

“Alive inside: the  story of music and memory” is a film which charts a one-man mission of Dan Cohen to bring music to residents of residential nursing homes.

I am honoured to have been invited yesterday to introduce this film at St George’s Church, Brighton, to an audience of about 100-120 members of the community.

3 Before

I am truly grateful to Lucy Frost, a clinical nursing specialist in Brighton, and Rachel Mortimer, from “Engage and Create”, a social enterprise which promotes wellbeing in an evidence-based way.

1 Lucy Frost

Music is a remarkable cultural phenomenon. Whatever side of your political fence, it’s true that the whole is more than the sum of the individual parts.

Music, as correctly observed by Prof Oliver Sacks, is in an unique position to involve numerous distributed neuronal networks involved in auditory perception, emotions, and attention. But what is also special about music is that it can raise powerful personal emotions, including ‘chills’ down your spine, and can compel you into voluntary movement and coordination.

Furthermore, it can bring back powerful personal memories from your autobiography. It is not uncommon for someone to tell you that they can vividly recollect the first time they heard a particular song.

Henry in his 90s, in a nursing home in a slumped posture in a chair, becomes ‘awakened’ when he hears music. But the remarkable thing is that this phenomenon is replicable.

I don’t feel ‘awakening’ is a hyperbolic word to use in this context.

I remember when I would put a horizontal cane in front of a person with Wilson’s disease, a rare copper metabolism problem; and who was ‘stuck’ in movement, like someone with Parkinson’s disease. The year was 1998, and the city was Warsaw as I was doing a study on cognition for my Ph.D.

This is reminiscent of the ‘Awakenings’ captured later in the famous film to do with the magical effect of a dopamine chemical medication on people with Parkinson’s disease symptoms, as following the outbreak of encephalitis lethargica.

Medical breakthroughs always come from the weirdest of places.

I think unlocking movement through a physical obstacle is akin to unlocking thinking through music.

In other words, I think the human brain responds well to external triggers when it cannot generate the computer program itself. I think the human brain has a form of human metronome which enables this response to physical obstacles and music in different contexts.

The late (and great) Prof Sir Richard Doll, after a lecture at Cambridge, said to me how he’d been told that, “serendipity is like looking for a needle in a haystack, and finding the farmer’s daughter.”

Numerous previous research studies have showed that your wellbeing is improved if you improve the wellbeing of others. Also, the effect of the musical ‘intervention’ is quite longlasting, in improving someone’s quality of life, or enhancing temporarily memory.

In this target-driven culture, where all outcomes have to be identified in meticulous detail, it is quite remarkable that music used this way has very few risks (e.g. it does not cause physical disease, it is not intensely costly if you have an inexpensive mp3 player which has relevant playlists.)

I managed to do a bit of ‘product placement’ for my own iPod Nano, even.

4 photo with iPod

And the potential benefits are enormous. Historically, it has been far too easy for certain professionals to abuse their power to prescribe antipsychotic medications as a ‘chemical cosh’ to “turn off” residents with dementia in homes.

The whole project forces us to justify whether the money put into prescribing medications which often very have modest effects on cognition and wellbeing, and have no proven effect on disease progression, is justified.

If Pharma did not have such a policy strangehold through corporate and regulatory capture, social prescribing, where doctors could prescribe a mp3 player, would be the norm not the exception. “Nesta”, the innovation hothouse, found in their report that most people want it but most people aren’t offered it.

As Kate Swaffer, Co-Chair of the ‘Dementia Alliance International’, a peak body representing people with dementia, emphasised last week addressing dignatories in Geneva for the World Health Organization, we need more effort to be put into research into living well with dementia.

“It is possible to live well with dementia” is in a way the first amendment of the Alzheimer’s Disease International. Bringing music back into some people’s lives might be a good start.

I was much more open about where I thought our English dementia policy has gone wrong, in a small pub in Brighton round the corner from the venue. Elated by my Diet Pepsi, I explained how we could be in a better place – but that’s for another day.

5 after

 

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It is now clear people with dementia and caregivers need to set the #globaldementia agenda

“Urgent” and “call for action” have become the potent memes in messaging radical transformative change. Hence the title of the statement about the #globaldementia event, held earlier this week in Geneva, came as no surprise to me.  What did genuinely come as a surprise was how accommodating both WHO and the Alzheimer’s Disease International were to the views of people with dementia there.

This was the public image; rather reminiscent of GCHQ, an omniscient and omnipotent body talking to each other. And indeed I found the communication between officials between different countries useful, even some still clung onto the deeply stigmatising language such as ‘horrific’ and ‘devastating’.

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The word though ‘urgent’ does merit some scrutiny. It implies that time is running out – and indeed Hillary Doxford, the representative of the World Dementia Council living well with dementia, explained that “time is the currency of people living with dementia”. Hillary herself explained how she was only given a finite length of time to live, according to her initial disclosure diagnosis. And this is not the first time that I have heard this issue being totally mishandled. The actual truth is that it can be very difficult to predict how long a person will live, and actually imparting a diagnosis of dementia should not bring that person any closer to their time of death. In fact, ideally, we want to be able to get to the stage where most people, after a diagnosis of dementia, are able to ‘live better with dementia’; and indeed initial evidence appears to support the notion that active social networking or even diet may have a beneficial effect. But Kate Swaffer brought out a point which I do feel is urgent; that high quality research into care and living better with dementia needs to have parity as that sort of research which ultimately yield a ‘cure’. The ‘experts’ this week had enormous difficulty in identifying what a cure for dementia might look like, and this is not surprising given that  there are about a hundred different types of dementia.

We didn’t hear much from caregivers themselves at the conference, which is not unexpected given what a full time job caregiving is. The “call for action” this time around. “Call for action” has become the call for arms for charities campaigning on dementia, but it is becoming increasingly clear that self-generating social movements campaigning for a change in how dementia is perceived by others is gathering considerably more momentum than the ‘dementia friendly communities’ construct. ‘Dementia friendly communities’ should not be underestimated for reframing aspects of communities around the needs of people in society with dementia to lead fulfilling independent lives, but it remains dangerously close to a “does he take sugar?” modus operandi. Even the “no decision about us without us” mantra assumes division of “them” against “us” – which led me to do my own personal #globaldementia pledge this time around.

pledge

I am looking forward to participating in an event hosted by the Mental Health Foundation on 26 March 2015 entitled, “Rights, dementia and the social model of disability: a new direction for policy and practice?” I must admit that I was expecting to be somewhat at odds with this report, but I found it spot on.  I’d therefore like to extend my personal thanks to Gráinne McGettrick, members of the project Advisory Group, 26 March speakers and participants, especially people living with dementia.

The document is very much in keeping with chapter 13 of my book “Living better with dementia: Good practice and innovation for the future”, with three forewords having been written by Kate Swaffer, Co-Chair of the Dementia Alliance International, a ‘peak body’ of people living with dementia, Beth Britton, celebrated blogger and campaigner, and Chris Roberts, living well with dementia.  The narrative of my book is ambitious; it basically puts people living with dementia, with an aspiration to live better, ‘in the driving seat’, and argues for a rôle for an individual who has received a diagnosis, a member of family or friend, and professional to take part in an extended network to help to deliver a personalised care plan. In chapter 13, I found myself confronting the rather individualistic approach of human rights, being reconciled with the ‘dementia friendly communities’ policy currently in vogue worldwide.

Living better with dementia - shortened version

For me the Mental Health Foundation report throws up a number of critical policy issues which will need to be confronted sooner or later. I suggest sooner; perhaps even I suggest ‘urgently’ with a similar ‘call to action’?

The issues for me are as follows.

1. Definition of dementia under English law

The guidance for the Equality Act (2010) helpfully includes dementia as  a disability. The case law, I feel, is more helpful than the statute law.

For the law, the link between ‘disability’ and ‘impairment’ is a key one Section 6(1) Equality Act [2010] states that a person (P) has a disability if P has a physical or mental impairment, and the impairment has a substantial and long term effect on P’s ability to carry out day to day activities.

In essence, the claimant must therefore show that there is an impairmen, the impairment has an adverse effect, the adverse effect is substantial, and the effect is long term.

Not all of the points have to be proved, and it has generally been accepted that claimants living with cancer, multiple sclerosis, or HIV/AIDS will have no problem in fulfilling this statutory definition.  The legal issue is how a medical condition affects a person ((e.g. mobility, manual dexterity, co-ordination, continence, ability to lift/carry, speech, hearing, eyesight, memory, ability to learn, perception of risk or physical danger).

The medical model requires the clear identification of deficits; whereas the social model, one which people themselves with dementia tend to prefer, looks at what people can do rather than what they cannot do. Arguably, attending a medical ‘check up’ which emphasises what you cannot do now compared to before, or brain shrinkage on your MRI scan, can be very demoralising and not particularly constructive for a person living his or her life.

How the impairment is caused is irrelevant in English law, and we know this from  Power v Panasonic UK Ltd [2003] IRLR 151, a case decided under the Disability Discrimination Act. There are possibly as many as hundred different types of dementia, and they all present with different ways, although it is certain that no two people living with dementia present the same. This calls into sharp focus of questioning what the point of the label is – such as the diagnostic category of dementia. In ‘diffuse lewy body type’ of dementia, certain medications are best avoided. Whereas dementia of the Alzheimer type typically is best characterised by early difficulties in learning and memory and spatial navigation, semantic dementia is best characterised by loss of specific types of knowledge, posterior cortical atrophy is best described as loss of higher visual processing early on, and behavioural variant frontotemporal dementia is most often characterised by an insidious change in personality and behaviour in the absence of cognitive deficits early on observed by others.

2. The enforceability of the law (access to justice)

Having an emphasis on the law is great to bolster that this a serious issue, rather than the more namby pamby softly softly approach of ‘dementia friendliness’. However, the usual criticisms of using a legal approach in my opinion apply; adherence to the law without a genuine change in cultural attitudes, a possible ‘race to the bottom’ with more enthusiasm about compliance than outcomes-focused regulation, or a sheer lack of enforceability due to drastic cuts in legal aid provision. In England, there has been quite savage cuts here consequent upon the Legal Aid and Sentencing and Punishment of Offenders Act (2012), which some rightly view as a demolition of the ‘welfare state’. One could and should argue, perhaps, that access to justice should be a necessary and critical part of a dementia friendly community?

3. The lack of cultural diversity considerations

The rights based approach is technically worthy of the same criticism as ‘dementia friendly communities’ in that in the drive to universal concrete individual rights there is little consideration of the cultural background of the person living with dementia (e.g. BAME communities, LBGT communities). But human rights by their nature are supposed to have a non-negotiable, inalienable fair about them, a universality which can be relied upon, so this may in fact be an advantage rather than a criticism. However, it could be  argued that ‘dementia friendly communities’ offers a much more culturally-sensitive tool than rights-based approaches (see for example Dementia Friendly Gurudwaras).

4. Are rights and capacity connected?

The recent R v Cheshire/Chester case has brought to the fore the precise inalienability of human rights, which cover a mass of issues such as liberty, even if a person is legally without capacity. There is a broad consensus that a human person should not lose his or her human rights if he or she loses capacity, but this prerequisites a robust definition of capacity, which many feel we have simply not arrived in the current English jurisdiction (nor a consensus on the best way to implement the Mental Capacity Act (2005)).

5. Institutional vs ‘successful living’

Across the last few decades there has been a general move away of institutionalising people with mental health conditions including learning difficulties and dementia. There is nonetheless a tension which does interface with the ‘rights based’ approach and disability activism, in that people who are not able to live alone should not be deemed as ‘failures’ of policy.

6. Does the United Nations Convention of Rights for People with Disabilities inform on what might constitute a dementia friendly community? (e.g. enjoyment of sport)

The legal definitions under the United Nations Convention for Persons with Disabilities, as pertaining to dementia, are indeed interesting, as they refer to specific things such as enjoyment of sport. Of course, prescribing such a list lays the Convention to the attack of  “expressio unius est exclusio alterius“,  that only things specified n the list are worthy of consideration.

But they do potentially offer the basis of minimum legal standards for a dementia friendly community which could even be legally enforceable (in theory), such as article 30 (participation in cultural life, recreation, leisure and sport). Actually, I am quite interested in article 29 (participation in political and public life), which emphasises that the same democratic principles should apply for people with dementia. There was in fact a clear violation here, as the current nominee for the World Dementia Council, living well with dementia, was not democratically elected.

7. Implications for needs assessment under the Care Act (2014) in the English jurisdiction

The phenomenon that some people with dementia “have good days” and “have bad days” is well known not least to people with dementia and caregivers themselves. In certain types of dementia, such as diffuse Lewy body dementia, it is not unusual for cognitive performance to be ‘fluctuating’. The traditional description of ‘multi-infarct dementia’ (or ‘post stroke dementia’) has been of a ‘stepwise’ progression, although many have queried the correctness of this term.

Whatever the precise details, it is generally accepted that the needs of a person with dementia will change, not least because dementia, whatever the precise nosological definition, is considered to be progressive (unless the symptoms of dementia present from causes other than dementia or the dementia is ‘reversible’ e.g. plasma exchange for paraneoplastic dementia). This poses a critical question as to how rights are related, if at all, to the fluctuating symptoms of dementia?  This logistically poses an issue of how often needs should be re-asssessed and how such ‘results’ are interpreted by professionals. Ideally, the benefits system linked to the Care Act (2014) regulations needs to be responsive to the care needs of any individual with dementia at any particular place and at any particular time. This certainly warrants careful scrutiny.

 8. Shift from a medicalisation to a social model (rôle models, development of a cure, training of workforce)

This is of course is THE big one in England, requiring a huge radical transformative change in England, combining health and care.

This requires breaking down organisational silos, different funding schemes, different power structures, different workforce requirements, different cultural attitudes, the breaking down of barriers of information transfer, a more collaborative or distributive style of leadership, better coordination between different forms of care and health provision, the double declutching from a fragmented illness repair service to a national health service. The change required is enormous.

I have always believed that political leaders or CEOs of big charities do not hold the key to bringing out ‘urgent change’. And here you really have to define what change one is trying to bring about. Even the mantra “care for today, cure for tomorrow” has brought about division, as people have asked, “why not care for tomorrow as well?” Kate Swaffer, Co-Chair of the Dementia Alliance International, has warned that there is no imminent cure in the pipeline, so there is a genuine issue of expectation management. How are even the most altruistic of the 45 million people living globally with dementia supposed to get excited about a cure or Big Data advances in dementia for 2025?

Very difficult, if you’re being honest.

I believe rôle models, of people living well with dementia, such as Ken Howard, Kate Swaffer, Chris Roberts, Mick  Carmody or Helga Rohra, hold the key here. They are THE authentic voice – to tell the organisers of the health and care services what is urgently needed from them, e.g. not 15 minute disclosures of diagnoses in the absence of loved ones with reference to an information pack in a busy clinic.

9. The power of the media

For all the efforts of destigmatising dementia, it is helpful if you have leaders in WHO or political Ministers of State calling “dementia” incessantly “horrific” and “devestating”. Nobody of course is asking for the negative aspects to be airbrushed out, but all most people want is some form of balance rather than ‘shock doctrine’ tactics. The stronghold of the media is not inconsiderable, especially if people with dementia are themselves to give birth themselves to a social movement, but here the tools of the new media, such as Facebook or Twitter, might help. One suspects that principal media outlets should be given much more stringent guidance on what is acceptable, and what isn’t.

10. Effective rehabilitation

Kate Swaffer herself noticed that ‘rehabilitation’ was noticeably absent from many if not all discussions. Why? Kate raised the point that if she had been given guidance on how to adjust to her diagnosis, on what she could do rather than what she could not do, she might have been able to carry on paid employment. Many people with dementia do not wish to take their employers to court over unfair dismissal, as that is a sure fire way to bring about a break down in employer-employee relations. That is an example where implementation of legal rights might bring about more damage than good. For many having received a diagnosis of dementia, effective engagement with the society and community is more beneficial than a lump sum payment from the employer, as we keep on being told in policy (because it is true) that marked loneliness often accompanies the diagnosis of dementia in all jurisdictions.

11. What is the end point? Equality versus diversity.

There is a sense that we do not actually know what the end point is for anything. We don’t even know what the end point for the cure for 2015 is, as we don’t have a coherent explanation of that despite numerous requests. Kate Swaffer suggested that a cure which gave somebody a protracted slow death might not be ideal either.  And the “dementia friendly communities” policy is fixated on equality, not diversity, which means that even if both rights-based approaches and dementia friendly communities were implemented to the hilt across all jurisdictions to the hilt the policies would clearly not satisfy everybody because of individual differences in diagnosis and service provision.

12. Are the services in place which do not inadvertently encourage division? 

Even the most professional professional this week confused dementia with a condition of ‘old age’. I have had this dispute with Kate Swaffer. In fact, we both agree. Many old people live with dementia. As you get older, your risk of getting dementia increases.  But there are many younger people with dementia too. We haven’t reached a point yet where points of service provision are not ageist, and therefore immune from judicial review. How far do you take rights? I’ve asked Chris Roberts whether he feels that old people’s homes are appropriate for younger people with dementia, and Chris reliably tells me that he has not intrinsic difficulty into going into a home with older people as he loves meeting people (also telling me that the difference between 45 and 55 should not be given greater attention than the difference between 65 and 75).

13. Is involvement of charity a good thing? (Problems to do with corporate and regulatory capture; does involvement of “charity” inadvertently reinforce a ‘victimhood’ nature of living with dementia?)

The system is clearly geared up to reinforce the medical model; you can see the way possible cures for dementia are promoted by certain corporate-like charities; and this is reinforced by the regulator such as NICE setting rigid guidelines for such interventions (such as cholinesterase inhibitors) with less attention to say the potential of an iPod to improve the quality of life of a person with dementia through ‘musical therapy’. The cost of distributing iPods may be more ‘cost effective’ value-wise for improving quality of life of people living with dementia than medications which do not, for most, slow down progression nor have a beneficial effect of symptoms further to a very limited time window for some? Surely this is the sort of discussion we need to be having, as well as the ones we saw at #globaldementia? The time may have to come where large charities are recognised more as being as the problem than the solution, particularly if they appear to dismiss calls for a national network of clinical nursing specialists in dementia. 

My somewhat reluctant conclusion is that rights-based approaches put people with dementias on a much firmer footing, and this cannot be a bad thing. However, my concern with this approach is that whilst right-based approaches appear fine in theory how they are actually implemented in real life which provide the acid test.

The national minimum wage sounds great, but…

Furthermore, one wonders whether the notion of living better with dementia rests easily with the concept of ‘victimhood’ which can inadvertently encroach on work.

Take for example, this recent section from an article from Norman McNamara’s Kickstarter to make a documentary about him and his initiatives:

“He added: “The Purple Angel Dementia Awareness Campaign has now become global and is being embraced by all four corners of the world.

People who matter have come together for one cause – to help those less fortunate than themselves.”

It is unclear to what extent certain people with dementia are happy with this ‘victim status’ portrayed by others?

 

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Kate Swaffer urges that research should not only focus on cure but also should examine care

This was my ‘pledge’ for #globaldementia

It reflects Kate Swaffer talking about people with dementia and caregivers being ‘equal partners’. I couldn’t agree more.

shib pledge

This is my enhanced version of ‘no decision about us without us’. It’s my way of saying “do not inadvertently create division” by making people with dementia seem like targets of a ‘does he take sugar?’ attitude. I feel personally that the ‘dementia friendly communities’ policy globally, as outlined here by the Alzheimer’s Disease International, is working well, away from the tokenistic patronising crap many of us have warned against.

And good on for @KateSwaffer, Chair of the Dementia Alliance International, for not only getting a seat at the table, but also making herself comfy at it and sending rhetorical nuclear missiles at the establishment.

Time for caption

In case you missed it you can watch it here. Kate spoke just after Jeremy Hunt in the session on Monday morning in Geneva, 16 March 2015.

Kate believes that “we must all include this in her goal”, “to think about how can empower people to live better with dementia”. But Kate was aghast that there had been no mention of rehabilitation thus far in the proceedings.

live well

Kate welcomed the significance of the appointment of Hillary Doxford onto the World Dementia Council. Hillary herself lives with young onset dementia. I myself campaigned for a person with dementia to be included as a member of the Council, but it was the Dementia Alliance International who spearheaded this.

Kate explained the need for better care, services and research into living better with dementia.

These are the three aims which Kate promoted.

three key issues

Kate called the ‘prescribed disengagement‘ which accompanied the disclosure of her diagnosis ‘unethical’. She emphasised, “we don’t have a cure yet. we all know that. we are not that much closer to a cure.”

In the article for Dementia journal, Kate describes it powerfully thus:-

“Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?

This Prescribed Dis-engagementTM sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”

Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.

The families and partners are also told they will have to give up work soon to become full time ‘carers’. Getting yourself acquainted with residential care is recommended. All of this advice is well-meaning, but based on a lack of education and misperceptions and myths about how people can live with dementia. This sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being; it can mean the person with dementia behaves like a ‘victim’ or ‘sufferer’, and many times their care partner as a martyr.”

She emphasised, “We need psychosocial interventions, and research into them.”

“It’s very clear to me that I could’ve stayed at work, and paying taxes.”

Kate made reference to some of the groundbreaking research which is happening to look at improving quality of life.

“HTA Goal-oriented cognitive rehabilitation in early-stage Alzheimer’s disease: multi-centre single-blind randomised controlled trial (GREAT)” is a collaborative research trial with Prof. Linda Clare as the chief investigator.

Early intervention offers the possibility of helping people with early-stage dementia (PwD) and their carers to manage the impact of the disease on everyday life, and reducing or delaying the progression of disability. “Cognitive rehabilitation” involves identifying realistic and achievable goals reflecting areas of everyday activity where the PwD experiences difficulty due to changes in memory and other cognitive abilities, and wishes to see improvements. needs are addressed in the context where they arise.

One thing’s certain: Kate has played a blinder. In speaking so powerfully about the importance of wellbeing for individuals who’ve received a diagnosis of dementia, she has put a new set of cards on the table. Far from dismissing the effort for finding the cure, which she calls ‘the golden egg’, Kate has drawn attention to the 470 million or so people in the world living with dementia, and the crucial need for them to be involved in policy. Kate Swaffer undoubtedly has left a significant legacy in rights for individuals living with dementia which has been carefully now seeded in a number of jurisdictions.

Dementia Advisory Group

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Whole person care and human rights triumph at #globaldementia

Full details of this conference are here.

Rosa Kornfeld-Matte (Independent Expert on the enjoyment of all human rights by older persons, mandated by UN Human Rights Council) was asked to speak.

This is a subject which interests me as I have been invited to an expert panel session at the Mental Health Foundation later this month on the subject of dementia as a disability.

MHF

Mark Pearson also spoke from the OECD on organising dementia care and services.

Pearson rightly in my opinion drew attention to the notion that people living with dementia do suffer from poor quality services.

More than half of people are not diagnosed as having dementia internationally, Pearson argues. But this is to ignore the considerable harm and distress in labelling someone as having a dementia diagnosis when he or she doesn’t.

But the subsequent statistics from Pearson are meritorious. A third of home in care homes are receiving antipsychotics, even when inappropriately prescribed. A third of people with dementia who go into hospital come out with reduced functional ability.

The statistics on poor quality care do indeed reflect the general picture reported in England from the Care Quality Commission.

OECD and WHO have been formulating a framework for dementia care across countries, providing a way of measuring good care and measuring progress.  This framework describes building action on strengthening domestic systems of health and social care. This is particularly pertinent in England where social care has been progressively cut in the last few years. Secondly, Pearson outlined the need to develop good policies; thirdly to measure progress.

10 different stages were then presented.

They move from risk reduction to delivery of diagnosis, to early stages, to support in the communities, the possible transfer to an institution, and finally end of life and palliative care; cross cutting issues including the intelligent use of technology.

Pearson then described the rôle of people in dementia care; the need to focus on personal interactions, a key factor in determining the quality of life.

“We do need to support the people who do the support.” Counselling, training, respite need to be targeted for carers; including low prestige and poor employment conditions. I personally am hoping that Andy Burnham MP can forge ahead with this in beefing up training of the workforce, as well as producing some rights for caregivers in the NHS Constitution.

Pearson also outlined the need for care coordination, between health and social care systems. There need to be better data sharing, electronic patient records, better coordination, for example, Pearson argues; and I could not agree more. Progress will be made in England, I believe, through whole person care.

Pearson emphasised the need to measure the quality of care, as a benchmarking of performance across different providers, in different countries; to measure policies, activities, and outcomes, systematically, as Pearson argues, for people living with dementia and caregivers.

The new OECD report can be found here.

Rosa did a much needed introduction to the importance of human rights.

ROSA

Rosa introduced ‘PANEL’ – for the need for all stakeholders to consider in policy (e.g. as for Scotland).

PANEL

People with dementia should be able to enjoy their rights and freedoms, to ensure dignity and privacy.

 

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