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Information sessions for dementia are only the 'tip of the iceberg'

iceberg

Getting complex innovation into practice is no mean feat, but models do exist which have stood the test of time.

A lot of getting systemic innovations off the ground has to be down to good ‘communication’ as indeed one model highlights. Influence, if not power, is critical for this.

communication

For example, you are possibly going to be hindered in spread widely good practice in clinical specialist nurses for dementia if they fail to reach key policy documents such as this one published recently for Wales?

I think of this in terms of ‘charity capture’, similar to other phenomena such as ‘regulatory capture‘ or ‘corporate capture‘.

Jeremy Hughes is due to give a talk at the Alzheimer’s Europe conference this year in Slovenia on the success of the ‘Dementia Friends’ programme: “The dementia friends campaign in the UK: a vital element for the development of a dementia-friendly society“. The “Dementia Friends programme” is considered to be “the biggest ever initiative to change people’s perceptions of dementia” (according to them).

The importance of this information session campaign cannot be understated. It is by no means a small achievement to get more than a million people knowing a bit more about the basics of dementia than otherwise. It was very clearly signposted in the 2009 English dementia strategy entitled, “Living well with dementia”; and the importance of sharing of information about dementia has been considered to be critically important to combat stigma and discrimination (as discussed in the Alzheimer’s Disease International 2012 report on stigma).

The information sessions certainly set the backdrop for the public being able to contribute. For example, the Alzheimer’s Research UK charity have just commenced a campaign to get people more involved in research.

And you don’t necessarily have to be living with one of the hundred or so dementias to be able to contribute to dementia research. The “Join Dementia Research” programme aims to link up members of the public with current research programmes to do with dementia.

I am about to run some further “Dementia Friends” sessions over the next few months, details here.

Date Address Session Link/URL
25 Jun 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here
02 Jul 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here
06 Aug 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here
27 Aug 2015,16:00 BPP Law School, 68-70 Red Lion St Holborn, London, Greater London, WC1R 4NY here

These are indeed some actions from people who’ve attended my information sessions.

  • Encourage friends and family to become Dementia Friends by LA
  • Looking for dementia activity in my local borough, the London Borough of Redbridge by DE
  • wear my badge and tell 5 friends about the dementia friends initiative by SH
  • I am meeting with carers I met on the course to offer support and advice about the things that helped me when I was caring for my mother by RP
  • Volunteer to help support someone with dementia by SM

I myself get exasperated by physicians who erroneously think that all people who receive a diagnosis of dementia are deemed automatically to have lost legal capacity; a ‘Dementia Friends’ programme is unlikely to touch that. I am bound to get exasperated at the marketing behind explanations of why Admiral Nurses have been discontinued in Hull, despite the overwhelming economic and clinical benefits of the Admiral Nurses model, but this is inevitably related to the quality of people manning clinical commissioning groups. Some members of CCGS have never even heard of specialist nurses for dementia, it turns out; this is indeed a very tragic indictment.

People living with dementia, it seems, are finally ‘having a say’. For example, the combined efforts of Dementia Alliance International, an international advocacy and support group, of by and exclusively for, people living with dementia, are remarkable.

There is a focus on dementia, and this can only be a good thing. But there is likewise an urgent need to ‘fix the broken social care system’, as indeed George McNamara rightly brought attention to most recently.

Information sessions on dementia are definitely a good thing. But they’re no replacement for a properly funded health and care service. They are, therefore, the start.

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It's time we spoke about 'mild cognitive impairment' in relation to dementia?

pillsDiagnosing any clinical condition is arbitrary, as it depends upon a person meeting certain criteria.

For brain disorders, the extent to which people meet certain criteria or not might mean they satisfy the diagnosis of ‘dementia’. The word ‘dementia’ has a public perception of its own, that’s why clinicians are very aware that when this diagnosis is disclosed it’s effectively being disclosed to a person’s friends and/or family as well.

I myself am physically disabled, and yet I am able to live well with my physical disability. I see double ‘all of the time’, due to the meningitis I lived through in 2007. I am able to pay taxes, and do my shopping, on my own. As such, I am ‘functionally independent’.

If I have a memory problem, or mild problems in cognition, but which are not so bad, and certainly not bad enough to impinge on my everyday life, I might be classified as having a ‘mild cognitive impairment’.

To put it succintly, “mild cognitive impairment” is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

That’s why putting the diagnosis in primary care down to a simple question ‘do you have problems with your memory?’ can often lead to a doctor seeking confirmation bias for making the diagnosis of dementia, when the diagnosis might not be dementia at all. In an older person, it might be the mild amnestic syndrome, or even depression.

In fact, looking at the trials as indeed Christa Maree Stephan and colleagues did in 2013, there’s a lot of scope of fuzziness in whether or not a person might receive a diagnosis of ‘amnestic mild cognitive impairment’ (“aMCI”).

This is a figure reproduced from their paper (under the ‘Creative Commons’ licence).

F1.large

When, a few years back, some clinicians revised the criteria for the aMCI, they were aware that many people with dementia would become re-classified as having aMCI.

As I have stated many times before, however, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

When NHS England decided to launch a policy of incentivising dementia diagnoses, most clinicians knew this was playing with fire, as it was setting people up to receive incorrect diagnoses of ‘dementia’. My colleague Dr Martin Brunet once elegantly referred to ‘the cobra effect‘, in a workshop I attended at the King’s Fund on their leadership in dementia day.

Ken Clasper recently brought up the subject in a blogpost called ‘Rediagnosis from one dementia to MCI’ on his popular blog ‘Living well with Lewy Body Dementia’.  Ken in this blogpost successfully touches upon the disorientating effect that this re-diagnosis can have.

I watched reaction to this blogpost on the social media, and many of the opinions were in the philosophy of clinicians ‘not doing their job’ properly. In fact, I have seen this approach taken regularly in recent years in videos instigated by caregivers with a subtext of ‘time to teach the medics’. And I certainly don’t deny that there is plenty of scope for teaching the medics on many things.

But one would think that, if a diagnosis needs to be changed, then it is better that the medic swallows professional pride and is open with the new diagnosis. There are valid reasons why the diagnosis might be changed, if only the diagnostic criteria have changed, or the symptoms of a person thought originally to have dementia are different to those expected.

And should medics be blamed for having incorrect diagnostic tools? Possibly. But I remember when I was a junior the eminent neuroradiologist at the time at the National Hospital for Neurology and Neurosurgery emphasising that you can never make a diagnosis of dementia on CT alone. There are people who have shrunken brains due to ‘normal ageing’. And likewise, I’ve seen many people who later develop clear-cut dementia who’ve had normal brain scans to begin with (particularly for some certain types of dementia, such as the behavioural variant of frontotemporal dementia).

But of course neither can clinicians be blasé about the diagnosis of dementia. One would have thought that England, which wishes to close the ‘dementia gap’ (i.e. finding the numbers of people who have dementia who remain undiagnosed with dementia), should wish to put resources into people who can make the diagnosis.

You’ll see from the table above it’s not that reliable to say for certain whether somebody’s developing a dementia from a ten minute chat in a busy GP surgery. You’d be fooled into thinking from the popular media that most GPs either do not want to make the diagnosis of dementia, or are incapable of doing so. This is of course a massive professional slur on GPs, but sadly had become an increasing trend as vindictive criticism of medics, as well as criticism of medics, has become a popular past-time.

The aphorism goes ‘the diagnosis of dementia is not meant to be a label, and it certainly is not meant to be disabling but enabling’. People’s lives are changed with a diagnosis of dementia inevitably, especially since the media have been far more successful in promoting the programme ‘Dementia Friends’  than in promoting the need for service provision from trained clinical specialist nurses or promoting the idea that it is possible to live better with dementia.

The mood music has changed. We’ve got another thrust of policy where we are all drug trial guinea pigs now. And many people have vested interests in promoting the idea that there is a pre-symptomatic phase of dementia, called “pre-dementia”, which is amenable to treatment. This of course is part of the whole problem of the over-diagnosis trend which Dr Iona Heath has brilliantly discussed.  Similarly, I feel Prof John Yudkin has been right to draw attention to the similar phenomenon of ‘pre-diabetes‘, which many of us feel serves the function of opening up new markets, patients who can become customers for drugs. Deborah Orr’s article on over-medicalisation of illness in general is brilliant, and I strongly commend it to you.

In a nutshell, it’s time we spoke about ‘mild cognitive impairment’ in relation to dementia? A certain bandwagon in dementia policy has gone ‘too far too fast’. This was a favourite catchphrase of Ed Balls – and look what happened to him.

 

 

Reference

Christa Maree Stephan B, Minett T, Pagett E, Siervo M, Brayne C, McKeith IG. Diagnosing Mild Cognitive Impairment (MCI) in clinical trials: a systematic review. BMJ Open. 2013 Feb 4;3(2). pii: e001909. doi: 10.1136/bmjopen-2012-001909. Print 2013.

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

cogs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The views of people living better with dementia, and their closest ones, matter intensely

ear

There’s been a long history of people having difficulty in saying what they mean by ‘integrated care’.

Such debates nearly always converge on difficulties and ‘sustainability’ of funding. In the narrowest sense, it probably means health and care coming together under operational constraints such as pooled budgets and care coordinators. In the wider sense, it probably refers to the notion of the health and wellbeing of a member of the public being determined by standards in health and care, but also in the wider environment, such as transport, leisure or housing.

I personally don’t feel we are all ‘patients’ all of the time, as this means for me we are subject to a medical intervention of some sort. To explain what I mean here, I am an alcoholic in recovery. I do not take any pills to keep me in recovery – it’s simply a way of life. That is my belief; that is my lived experience.

Recent news headlines have drawn attention to the drive towards overmedicalisation. Deborah Orr did an excellent piece on it, and Dr Aseem Malhotra has been determined in getting this the exposure it deserves.

There’s been some confusion about how hospital patients live with dementia, and it might be that a figure round 45% is at the upper end of the scale. There has nonetheless been a helpful scrutiny of the experience of people living with dementia in acute hospital settings, with an acknowledgement that enhancing health environments has a wider rôle to play. Acknowledging that individuals have distinct identities, and are not simply fodder for the NHS ‘patient flow machine’, through respect of their biographies, through life story has played a huge in changing the narrative.

I have been both a junior doctor and a patient, in fact in the same major teaching hospital in dementia in London. Ward rounds are fast, and constitute the ‘operational business’ of seeing the patient briefly armed with recent investigations. But they are in no sense of the word the doctor getting to know the patient. They’re a snapshot, in reference to what more has to be done on an admission, with a view to discharge. People with dementia end up in acute hospital for the most part not directly due to the dementia but due to a concomitant problem such as pneumonia or urinary sepsis.

‘Measuring the patient’ serves no function unless you actually want to listen carefully to, and not just ‘hear’, the experiences of people with dementia and their closest ones. That’s why it’s important to listen to people’s point of views; a carer might wish to accompany a person with dementia into hospital, and that person with dementia might want it too. And ‘views’ on a service are not the same as the ‘experience’. I know somebody’s experience of how he received the diagnosis of dementia in a busy outpatients’ clinic in a noisy environment – but I also know full well his view on it, and I’m pretty certain it has never been acted upon by his local NHS Trust to improve the service delivery. And there’s little appetite of Big Charity to want to use their research monies to investigate this.

And yet despite this, a person living with dementia is actually the expert in his dementia in his place and his time, and he’ll tell you that he is far more than his condition. It’s essential to provide an environment where people can talk about their views, beliefs, concerns and expectations in an un-rushed, unstructured way, so as to bring out the details of greatest importance or interest to patients using the NHS or people using the care services.

A huge amount of effort is put into the machinery of feedback for the NHS but my experience of buckets of complaint forms and incident forms which were simply filed in file 13. If a person with dementia feels that something has gone ‘right’, in other words he has received useful advice about design of his home environment, useful help on managing other health conditions, or felt that he is living in appropriate housing, such ‘good feedback’ should be harnessed. Admittedly, this is probably less common than complaints, but they all feed into a culture of improvement, and it’s essential that the workforce should have the values where they should wish to embrace improvements in health and care, for both research and service provision.

I believe strongly as someone who has trained in the law that rights are useless unless they acted upon. We shouldn’t be afraid to tackle poor care knowing what we know about equality and human rights through bodies such as the Equalities and Human Rights Commission, in, say, upholding dignity under a right to be free from degrading treatment. But likewise we can’t rely on the market to deliver this in a patchy piecemeal market – private providers also need support in understanding the picture. People do need support, and they do need to feel there is some immediacy about an appropriate action happening.

A big part of where things have gone wrong in certain areas of service provision or research, such as in diagnosis and post-diagnostic support of people from various ethnic groups, LBGT groups, people with longstanding intellectual difficulties, younger onset dementia, for example, is that the systems are not sufficiently flexible and do not have the capacity or resources to cope. Co-creating improvement in a spirit of partnership, not “bums on seats” on panels, must be the way forward here.

Ultimately, I want professionals, academics, commissioners, practitioners, amongst others to be able to say, “You said and we listened” from the lived experiences to inform on policy in dementia in England. Sadly, we still are a long way from that, but we’ve begun in the right direction I feel.

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'Dementia friendly' checkouts: more than a fad?

Tesco and Asda are two of the stores which have introduced ‘dementia friendly checkouts’ in supermarkets according to two reports.

Both reports refer to ‘training’ even though the Alzheimer’s Society state clearly ‘Dementia Friends’ is about information sessions, not training Both reports refer to the ‘Dementia Friends’ programme and the Alzheimer’s Society. I myself am a ‘Dementia Friends Champion’, and indeed I am due to give an information session at BPP Law School next thursday (details here).

Dementia Awareness Week was about sharing wider knowledge about dementia, rather than promoting the Alzheimer’s Society solely though the Alzheimer’s Society should be congratulated for giving the week momentum; and the the success of this, arguably, is reflected in the diversity and quality of tweets using the hashtag.

Alzheimer’s Research UK came up with an intriguing idea – the auction of hats to raise money for research into dementias. I myself know recipients of these grants, and the work invariably is outstanding. We must be keen to promote research into care as well as cure, however, and this needs the correct political lead.

DFC2

Of course, by doing ‘Dementia Friends’ you’re not supposed to be “locked in” to working only as a volunteer for the Alzheimer’s Society. There is no such exclusivity requirement. And there’s no better time than now to campaign for dementia, such as the petition here against Hull Clinical Commissioning Group in their short-sighted decision not to commission Admiral nurses (a type of clinical nurse specialist for dementia).

The ‘dementia friendly communities’ policy tranche is indeed global, and spearheaded by a number of protagonists, including Innovations in dementia and the Joseph Rowntree Foundation. At a time when there is still much stigma and prejudice against dementia in society, the aim was to provide an environment which was conducive for people living with dementia, friends or families to lead fuller lives. This is, of course, a very laudable policy aim, and involves not just the health and care systems, but the wider ‘social determinants of health’ such as retail and banking, housing and transport.

It is worth at this point considering the irony of the approach of ‘dementia friendly checkouts’ in the context of the ‘Dementia Friends’ programme. One of the five key messages of this information session programme is that ‘There is more to the person than the dementia’. This was explained to me last year in Glasgow by Joy Watson as “putting the ME in deMEntia”.

Joy

The issue is that in person-centred approaches in dementia post-diagnostic care and support people aren’t defined by a label. For example, you should be very careful about the use of the word ‘elderly’. There are some NHS Trusts that define ‘elderly’ for the purposes of their acute medical take as patients above the age of 65; others above 85. And, as Chris Roberts said to me once, the differences between people aged 55 and 65, 65 and 75, 75 and 85, can be big or small. We all know 68 year olds who appear quite ‘frail’ but 85 year olds who appear quite ‘spritely’. But the issue is that, as far as commissioning is concerned in the NHS and the voluntary sector, things tend to get defined by their labels, such as new ‘million pound frailty units’. I’ve seen it before – that policy based on fashion or trends invariably ends in tears.

I think if you chat with people what they think about supermarket checkouts you will get a proportion of people who report that they’re chaotic stressful places. Many people without dementia dislike them. I in fact dislike them, not living with dementia; which is why I buy my shopping online. I also don’t know many people who meticulously count their coins in paying for their weekly shopping, so huge banners with coins may not help.

People living with dementia often describe members of the public raising the volume of their voice at them as if they’re ‘stupid’. It could be that you have problems in recognising the shapes of coins. This is called a ‘visual agnosia’. I know the late Sir Terry Pratchett described not being able to recognise a 50p coin from its shape, which is a touch form of the same cognitive condition, called ‘tactile agnosia’, which can signpost a diagnosis of ‘posterior cortical atrophy’ type of dementia.

As Pratchett was reported to have said,

“For some, they might struggle in a supermarket with finding the right change. That nagging voice in their head willing them to understand the difference between a 5p piece and £1 and yet their brain refusing to help them. Or they might lose patience with friends or family, struggling to follow conversations.”

Again a big banner won’t help. And for people with classical Alzheimer’s disease their long term memories will be very good as opposed to their short term memories.

A more appropriate term for examples such as the ‘dementia friendly checkouts’ might be ‘dementia inclusive communities’ – and this is indeed keeping with rights-based advocacy, where stakeholders uphold their equality (and for the time being human rights) rights under the law. But there maintains for me, and many others, this stubborn strand in policy in whether it is in fact creating inclusivity or ‘otherness’ for “people with dementia”?

“People with dementia” is a homogenous term which is not only an injustice to the hundred or so different types of dementia but also an injustice to the 47 or so million people living with dementia all with different abilities in cognition. ‘People with dementia’ are most likely to have cognitive disabilities more than ‘people with bowel cancer’, but one must be mindful of the fact one would think twice about having a special shopping aisle for people with operated bowel cancer (for people with colostomy bags).

Of course, the argument is at risk of getting utterly ridiculous. But this issue became very vibrant indeed as one of the producers of the film “Still Alice” asked the people living with dementia in a crowded lecture theatre in Perth, Western Australia, to stand up to identify themselves. The general ‘feedback’ is that this stunt was generally felt to be rather humiliating, and Kate Swaffer, Co-Chair of the Dementia Alliance International (DAI), received a number of complaints about it. The DAI is the leading international group consisting only of people living with dementia.

We are in a different place with stigma and dementia to where we were with physical disability, possibly. I am physically disabled, so I feel “within my rights” to discuss this. Many people find the word ‘disabled’ and being in a wheelchair “empowering” – many disempowering. You can take your pick as to whether people with dementia want to be identified in a separate shopping aisle in a public supermarket. But this criticism is not one which I have intended to level at proponents of ‘dementia friendly supermarkets’ – it’s simply a wider policy observation as to whether, yet again, the policy promotes inclusivity or otherness. There will be people who believe that ‘all publicity is good publicity’, but you can unfortunately have the wrong type of publicity (like the wrong type of snow).

And all this does matter if we are to bridge the lived experience of all people who’ve received a diagnosis of a dementia and what the crude policy levers are trying to achieve. I do, however, wish to thank the people behind ‘dementia friendly checkouts’ for their excellent work.

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Dementia Awareness Week 2015. A period of self-reflection will do no harm.

Even Deloitte’s latest report on ‘business ecosystems’ emphasises the importance of collaboration as well as competitions,

“Participants are additionally incentivised by shared interests, goals, and values, as well as by the growing need to collaborate in order to meet increasing customer demands, to invest in the long-term health of their shared ecosystem, from which all can derive mutual benefit.”

A cultural change from an over reliance on medications and treating all people with dementia as ‘patients’ to a perspective on where living well with dementia, such as with aids in the environment or better care and attention from services, is ‘second nature’ is a demanding one.

Traditional programs of ‘dementia friendliness’, such as ‘Dementia Friends’ in England, “Dementia Friendly Bruges”, or the Japanese ‘caravans’ initiative, all ultimately have the aim of destigmatising dementia and to attack discrimination.

I can be aware of my postman, without ever catching sight of him, knowing what he does, or even receiving mail off him. “Awareness” of dementia might mean anything; it could mean wanting to pump money into a cure for Alzheimer’s disease ignoring the other 99 types of dementia, being ‘aware’ that social care funding has been on its knees for the last few years in England, or realising that research into quality of life into dementia continues the ‘bogey man’ in funding priorities of dementia research.

No-one can deny we are overall in England in a better place with ‘dementia awareness’. The Alzheimer’s Society have never had it so good, but even hashtag capture (“#DAW2015) risks promoting ‘Dementia Friends’ and chosen ‘pet’ projects of the NHS and their marketing, at the expense of projects which are indeed languishing. I am frustrated about how little attention Dementia(UK) get for the clinical nursing specialists (CNS) called Admiral nurses compared to  CNS from Marie Curie or Macmillan; and this is a political thing. You would be forgiven for thinking that there aren’t many budding entities in a thriving plural sector; but there are many great people and organisations doing fabulous work.

How many members of the public are also aware of what Alzheimers BRACE, Dementia UK  or Young Dementia UK do? One is tempted even to kick terms such as ‘dementia awareness’ into the long grass, when it is real education and knowledge which are strongly needed, like robust resources for training of the workforce and service provision. Rights-based advocacy becomes harder to promote when you have the repeal of the Human Rights Act, which seems relatively unimportant to the leading dementia charity in the  UK.

Take for example the recent de-commissioning of the Admiral nurses service by Hull CCG. It has fast become clear that many commissioners are attracted by ‘shiny boxes’ and gimmicks (with award winners) rather than material improvements to service provision. Many commissioners are not themselves trained in aspects of living better with dementia policy, such as independent advocacy, design of built environments, integrated housing systems, or the value of clinical specialist nurses in improving the quality of life of people with dementia and also carers.

As if by clockwork, every few months virtually, it seems, there’s a brand new conference on dementia policy. And invariably, the input from people living with dementia will be minimal; or super-human efforts have to be made to convince the organisers that there should be a person living with dementia on the panel at all. People living with dementia are invariably an ‘after thought’. This is in sharp contrast to approaches such as from other units such as CLAHRC East Midlands where there is a proud tradition of involving all stakeholders’ views in service provision and research.

The ‘Dementia Alliance International‘ is a very strong and dynamic community, which promotes the views of people living with dementia including on the world stage such as the recent Alzheimer’s Disease International. They have been at the forefront of discussing issues such as human rights and disability discrimination, and the approach is one of meaningful education by people with dementia rather than ‘training’ or ‘badges’. The current power of this group can be strikingly attributed to the efforts of many, but not least of one of its co-chairs Kate Swaffer (@KateSwaffer).

“Dementia awareness”, however-so defined, can never be able knowing that dementia somewhere exists. It is about knowing basic things, such that it’s not just ‘memory loss in old people’ – it’s about knowing there are various different common forms of dementia which can present in a number of age groups in a number of ways. We must move the agenda on from competitive advantage by people selling ‘dementia awareness’ onto meaningful engagement and empowering, and this also means the mainstream media avoiding pejorative framing methods such as ‘dementia sufferers‘.

Meaningful change will be brought about not without necessarily the grandiosity of ‘change agents’, but by people living with dementia themselves. There are remarkable practitioners from social care backgrounds who also know what dementia service provision means in reality. Physicians such as Dr Al Power can find themselves unique with the medical profession in raising awareness of the offence of the term ‘challenging behaviours’ amongst physicians and nurses being paid being awarded big grants to conduct ‘research’ into them.

Any one person who knows more about dementia as a result of ‘Dementia Awareness Week’ is an achievement, but critically thinking about the quality as well as the quantity of research is on its knees. The market, with some untrained commissioners, currently is not delivering high quality service provision in dementia; and we need better awareness of that and many important related issues too.

 

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Where would repeal of the Human Rights Act leave rights based advocacy for dementia?

high court

Tomorrow is in fact the day of the ‘Legal Aid walk’ – the annual event where law firms, law students, barristers, solicitors and supporting staff take to the streets in the heart of London to walk a fair old distance in support of legal aid and access to justice.

This is very timely. Law is one of my strong interests; so is dementia. I am in fact trained in both. This is why the imminent plan to repeal the Human Rights Act 1998 is of great significance to me. I have written previously on the huge importance of rights based approaches to dementia in my blogpost here, and I have even devoted a full chapter on it on my new book on domestic and global dementia policy. But even academic lawyers would be the first to admit they’re not astrologers; the future of the legislation on human rights is clearly unchartered territory even now.

There will be very many accounts of the view that repealing the Human Rights Act is a backward step in the law, many given by many eminent lawyers. I do not want to go over the same ground here, but needless to say they are widely available; such as by Philippe Sands or Keir Starmer.

The Conservative Party’s plan to establish a Bill of Rights to replace the Human Rights Act has helpfully been published. It was a clear manifesto pledge. If the opinion polls were correct, no one party expected to win the general election outright, so it’s quite likely the Conservative Party wished to lose the pledge on abolition of human rights to negotiation with the Liberal Democrats, for example. It is currently reported that the SNP wish to ‘fight attempts to abolish the Human Rights Act’. And it has been a longstanding commitment of the Scottish jurisdiction to promote ‘rights based approaches‘ in dementia for people with dementia and carers.

Whatever happens in the term of this parliament is unpredictable. Whilst the “Salisbury convention” provides that manifesto pledges should see the light of day on the statute books, it is also clear that there is a significant number of peers who will not condone abolition of the Human Rights Act. Lord Lester, a Liberal peer, has made it clear on the BBC Radio 4 programme that he does not want to make ‘wrecking amendments’, but takes the attitude that he does want to make the proposals ‘better law’. The Conservative Party have tried to send out the message that the proposed change in the law is not to abolish human rights, but the fact that Labour have just appointed Lord Charlie Falconer QC to spearhead the charge of the brigade as Shadow Lord Chancellor and Shadow Minister of Justice is very telling. Lord Falconer was indeed one of the architects of the original Human Rights Act under a previous administration. All it needs is for a “magnificent seven” in number to rebel; probably the Democrat Unionist Party are not the ones too, but ‘grandees’ with a legal training Ken Clarke QC MP and Dominic Grieve QC might.

Changes to the law theoretically offer an opportunity to include new ‘rights’, such as the right to a timely diagnosis of a medical condition. It is critical to note that not all rights in rights based advocacy for dementia come from human rights; there are rights in equality law which mitigate against discrimination, and rights in employment law which mitigate against unfair dismissal, for example. It is also important to note that not all rights are legal; for example it was morally repulsive to allow segregation under Apartheid in South Africa before a change in the law was afforded. There is therefore some basis to the messaging that rights existed before the Human Rights Act; they have done so since the Magna Carta in fact.

And rights have to be enforceable. At the moment, in England, there is a huge problem with access to justice, hence the importance of such initiatives such as the Legal Aid Walk. Legislation from the previous government in the form of the Legal aid and sentencing and punishment of offenders act 2012 was hugely detrimental for this cause, with concomitant destruction of law centres. Human rights are indeed enforceable through, for example, the High Court under judicial review, or through the Equality and Human Rights Commission.

But the critical thing about human rights is that they’re not as such ‘British rights’. They’re international, inalienable, available to everyone – they’re universal. Whilst we are still signatories to the European Convention on Human Rights, any British citizen is free to petition Strasbourg directly over an issue to do with human rights; it would be a huge deal if the UK sent out a message that it no longer wished to be a signatory of the Convention when it was originally one of its architects. Even with abolition of the Human Rights Act (1998) in this jurisdiction, dementia can still come under disability under the UN Convention for People with Disabilities (“UKCPD”). This statutory instrument has a whole host of rights, including the right for democratic representation and right to participate in public life (article 29) ( which the World Dementia Council would be wise to read). The UK may or may not be under current investigation for breaches of the UKCPD, and we are in any case observing the United Nations Declaration of Human Rights.

These rights are wide-ranging and important for our political narrative. They’re relevant to our discussion of capacity, that people with dementia have human rights regardless of their capacity (related cases such as the Bournewood Gap are particularly important here).  Such rights are relevant to various issues, such as “independent living”, and we can learn a lot from the wider disability movement here (such as the brilliant work of John Evans).  As indeed human rights are important for the devolution and Good Friday agreements, the discussion over human rights indeed embraces a wide range of stakeholders involved in dementia policy, such as SCIE, where dignity is intimately related to a right to be free from degrading treatment (see their guidelines). And unsurprisingly human rights are totally pervasive to the work of the Care Quality Commission. The success of human rights has been much to do with motivating a ‘social movement’, imbuing a sense of ‘rights consciousness’ in keen followers around the world.

I personally am a big advocate of ‘bounded rationality‘ in strategising about the future, in dealing with risk and uncertainty.  The discussion over human rights is clearly politically driven, but is essentially for me about protecting those people who are most vulnerable too. Living better with dementia policy is much enhanced with a rights based approach. Some strands in the debate are rational; some less so. But we are living in uncertain times, and political tensions are high. Soon places of the jigsaw will fall into place, and we will all be able to deal with it at the time.

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Living with dementia in care homes – not just 'commissioning services'

An organic transformative cultural change towards a sense of ‘working together’ will drive the development of care home services which are driven ultimately by the people who need them.

The population of residents in care and nursing homes can often too have diverse and complex cognitive and behavioural needs. The mental health of residents, such as depression, can often be totally ignored, however remains amenable to treatment from psychological therapy. And yet care can be fragmented and poorly co-ordinated. Critical to this is understanding people’s individual backgrounds, or life stories, and, it is of course a workforce planning issue that staff of all grades including student nurses are fully trained in such approaches.

Poor co-ordination of care between different care environments can be distressing for all involved, not least NHS patients and carers, and can unfortunately lead to a breakdown of trust and compassion. The NHS is currently aiming for a whole system, sustainable model of integrated care. For example, multidisciplinary ‘vanguards’ have been established linking GPs to community beds, i.e. care homes, aiming for personalised care plans, improving person experience and avoiding hospital admissions where desirable.

“In-reach” services mean that a patient might be now cared for at home, enhanced by improvements in telecare and other technology innovations. Looking for high quality outcomes, rather than merely commissioning for services, arguably has become very important, with care homes well placed to become ‘community hubs’, priming reablement or rehabilitation after secondary care, or offering support for carers in the community. Reablement is being increasingly viewed as an opportunity allowing independent outcomes-focused living in the short and long term.

Care homes have come under recent scrutiny, not only in terms of high profile regulatory issues, but also in a shift in emphasis from minimal compliance to high quality outcomes from regulators. There has also been a greater focus on the need for anti-discriminatory language, the need to acknowledge the social care and nursing perspectives, and the desire to improve wellbeing and quality of care. But ensuring quality of care needs close partnership with private and voluntary sectors, in the context of trenchant local financial pressures. Austerity can never be an excuse for cutting back from less visible caring needs, such as mouth care, which requires expertise and full attention.

It is all too easy to use the term ‘person centred care’ as the solution to all quality of life and quality of care concerns, but it is now fully acknowledged that meaningful activity and occupation, high value staffing, and protection against “risky threats” such as neglect and abuse are all essential in delivering good care homes. People living with dementia tend to have specialist needs, such as co-morbidities such as frailty, often experiencing loneliness after the point of diagnosis, and this necessitates co-commissioning approach.

Tragically, too, there is a shortfall in quality and quality of research in care homes. Previously, it had become a default option for some to call people with dementia as having challenging behaviours, and yet we do need better research in synthesising perspectives of residents themselves, relatives and staff. Existential issues, such as religiosity or spirituality, might exist in residents, and it must surely be ethical for care providers to identify these issues accurately. End of life care requires in a care homes requires a complete understanding of residents’ life experiences in ‘accepting’ being in a care home, and is inevitably a delicate balancing act involving the views of ‘significant others’. Finally, we need to have much greater definition on what can cause the problems in residential care; such as poor physical environments, polypharmacy, poor mobility, falls, and infections. But we further must take a balanced approach with authentic leadership.

With recent devolution of other responsibility to local areas, such as in housing or transport, but one which emphasises looking for outcomes rather than commissioning services, hopefully residential care will be characterised in England by autonomy and a rich diversity. It seems sensible for us to take stock about where we want a joined up approach involving care homes to head, even if it is the case that most of us would not want to start from here.

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About my new book "Living better with dementia"

book cover design

 

The Alzheimer’s Disease International organisation held its annual conference this year (2015) in Perth, Western Australia. The title of the conference was ‘Cure, care and lived experience’, and indeed many delegates who attended there are living with dementia. I feel that we had a sensational time.

 

With dementia now on the world stage following global events, there has inevitably been greater scrutiny of who’s saying what, where, how, when and why. More detail is being added to the canvas: for example, do we really mean ‘friendly communities’, or do we mean ‘inclusive’ or ‘accessible’ communities.

 

Language matters enormously; and we, I feel, are collectively in a much better place than where we were only a few years. The social movement of people living with dementia and those in caring and supportive relationships, is experiencing a ‘sea change’; the disability movement has had a lot to do with it. Words which have been commonly used without a second blink, such as ‘wandering’ or even ‘carers’, now need attention, but even here there is a danger of paralysis by analysis.

 

It’s no longer permissible for ‘professionals’ to compound the stigma. Terms such as ‘challenging behaviours’ are now being recalibrated in response to basic humanity; an understanding that people living with dementia, like all of us, can feel very frightened.

 

Language is not the only factor which has framed the narrative. Laws also do. But there is a common humanity which far transcends laws. Whilst a general election in the UK has recently turned the focus onto human rights, ‘rights based advocacy’ continues to build an unstoppable momentum, partly in response to international conventions, but also in response to meeting people’s fundamental needs.

 

It is now palpable in international policy that there are compelling arguments to bring together all the factional parts of the health and care systems, and that the wellbeing of individuals is fundamentally dependent on building bricks in the rest of society too.

 

Both research and service provision for dementia are fundamentally driven by hope. This means the hope and aspirations of people currently living with dementia must not get squashed by poor care or diversionary tactics for a cure tomorrow.

 

People living with dementia represent a powerful resource in themselves. It’s now possible for one person trying to live better with dementia to find a friend in a totally different country through social networks. Communities literally no know no bounds, and patients happen to be persons who happen to become unwell sometimes.

 

None of this book is to be taken as professional legal or medical advice. What I have tried to do is to start a reasonable debate in certain areas, and it is up to others to take up the mantle. You are very strongly encouraged to go to the original sources of other people’s work which I have tried to discuss in good faith. You may legitimately come to completely different conclusions as me, and I have never intended to misrepresent anyone.

 

But now I’d like very much to thank certain people, not least people who have inspired me, or even not given up on me.

 

I’d like to thank people who’ve kindly given up time to write my Forewords (Beth Britton, Chris Roberts, and Kate Swaffer). I’d like to say thanks to people who have taught me about the dementias ever, in particular friends of mine living with dementia and their close friends and family. And I’d like to thank especially my mother and late father, without whom none of this would have been possible.

 

I essentially have two settled views: that demanding things happen to the nicest of people, and anything can happen to anyone at any time.

 

Take care.

 

Nothing’s going to stop us now.

 

 

Dr Shibley Rahman

London

May 2015

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I feel sharing knowledge about dementia is important. This is not privileged information.

knowledge-sharing-image-cropped_10

 

A few weeks ago, I gave a talk for the policy satellite session for the world Alzheimer’s Disease International conference on whether knowledge about the risk of developing dementia lent itself to private insurance markets.

The basic issue is this.

Some time in the future you might consent to0 have a full genetic screen of yourself done, and the information made available to the State. The question is: what you do with the information about your risk for dementia (assuming some of it can be validly determined from your genes not the environment).

Would you behave more ‘riskily’ if your chances of dementia were low? Or if you were at high risk would you take out an insurance policy knowing you had a lot to gain if you developed dementia?

Information is at the heart of insurance systems. There are key planks of dementia policy around the world which rely on high quality information: they are risk and choice.

If you’ve been given a diagnosis of dementia you can’t live your life in a cocoon arguably: you need to embrace risk to live better with dementia.

A choice, if you have enough money to make your choice, features in a number of ways for a person living with dementia: for example, your decision to live at home, an ‘extra care setting’ or a residential setting like care home or nursing home.

Statistics provided through the Alzheimer’s Disease International currently estimate that there are about 47 million people living with dementia. In the UK, there are probably about 800,000.

Knowledge on the whole can be empowering. It is thought for example that if more people knew about what the dementias are they would be less frightened of dementia.

Or knowledge itself can start fear. Suppose I told you you had ‘pre dementia’, so that you were in the first stage of dementia, except you currently had no symptoms.

You could turn this fear into power. Theoretically, you could alter your lifestyle to reduce your chances of developing dementia.

Every few weeks, I run a fifty minute information session at my law school where I indeed graduated from my law school. I feel that it is a duty to pass on this knowledge, through the successful ‘Dementia Friends’ programme.

As I am also an active researcher in dementia, writing books and presenting at conferences, I feel it is an honour to encourage members of the public sufficiently they wish to pass on knowledge about dementia to others.

I first knew of this in my junior physician training; the approach of ‘see one, do one, teach one’ later got formalised for me in the teachings of something called “Miller’s pyramid”.

But passing on knowledge is a privilege.

There is no proportionate need to keep this knowledge about what the dementias are ‘confidential’. The chances are that virtually all members of my audiences know somebody who know somebody living with dementia.

Whatever one’s politics, it is very enjoyable to live in a country which promotes an ethos of knowledge sharing about dementia, and research.

What is not so nice is witnessing a social care system on its knees, as the governing parties appear to creep reluctantly towards ‘integrated care’.

 

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