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Sticks and stones may break my bones



I had first become interested in the language surrounding dementia in 2014, when I presented a poster on the G8 pitch, at the Alzheimer’s Europe conference in Glasgow.

At that point, I realised that sticks and stones could break my bones, but words could hurt me.

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I have long since not attended any national or international conferences, not simply because I found the same topics being discussed in perpetuity, but because I felt the conferences were for an in-house cliques who were far more into massaging their own egos and putting themselves up in flash hotels than the reality of dementia.

But I later returned to the issue of language, in relation to stigma, in my second book on dementia ‘Living better with dementia’ published in 2015 by Jessica Kingsley Publishers. As my own mother lives with me, and as her dementia advances, I’ve genuinely found my own book to be a source of information and support. For example, only last night I was reading up on my own thoughts of the ‘sweet tooth’ in dementia and the neuroscientific evidence for why it occurs. Latterly, I’ve toyed with the idea of writing a cookbook for unpaid carers, living with limited resources including scarce money and time, of people living with dementia. I would love to work with someone who’s interested in this specialist field, such as a nutritionist or dietician, to help me.

I became physically disabled in 2007 after more than a month unconscious on the intensive care unit of a local hospital, where I was invasively monitored for acute meningitis. Although I subsequently read Goffman on stigma about a decade later, I had the misfortune to experience stigma first-hand. The sense of ‘otherness’ is something you experience if you’re in a wheelchair, and a London cab refuses to stop despite the cab having its yellow light on. Of course, I had direct experiences of ‘otherness’ as other medical professionals disowned and excluded me when I needed help the most – both in my alcoholism and in recovery. I am currently doing professional dilemma questions, and the knowledge that senior clinical people I worked with turned a blind eye, or did not know what to do and did not admit it, to my illness still frightens me.

As a result of this, I have a low threshold to calling out ‘otherness’, that is where you define people as different to you, and, more than than that, try to discredit them. This might include supporters of Brexit or not, Jewish or Muslim citizens or not, or even living with a long term condition. I don’t think the key to destigmatising stigma is by segregating people. At worst, this might include the ghettoization of people with dementia or mild cognitive impairment such that they all safely live in the same ‘dementia village’, to all intents and purposes ‘out of sight’ and ‘out of mind’. Care homes used to be criticised, by some, for potentially warehousing individuals if the prescription of chemical or physical restraints was frequently abused, similarly. This is not real integration and inclusion, in other awards appreciating the diversity of individuals, but actually lumping all people together with the same label.

For example, in ‘dementia friendly communities’, we don’t acknowledge individuals have different qualia of cognitive impairments, in memory, language or whatever, at various degrees of severity. We don’t discuss how the social determinants of health impact on the health and wellbeing of people, such as poverty or the shutting of day centres. We just clump all people together as ‘dementia’. This is not a million miles off of creating vast groups comprising unique individuals, such as ‘learning disabilities’ or ‘the elderly’.

Whilst the counter-argument is that identification of these groups of people means that their needs can be serviced, often the opposite is true. Recently, a paper has been published on identifying the most ‘frail’ people so that we can be aware that they are the most intense in resource allocation. But think about this carefully. This can mean that we use the information to discriminate actively against the most vulnerable – ‘equity’ and ‘justice’ are not necessarily compatible ethically.

Above all, I am scared how language is used to legitimise discrimination, ‘otherness’ and to embolden other people’s vulnerabilities and weaknesses.

I did a brief scan of some ‘offending’ words, and I compiled them into a table.

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I have been much derided for talking about “assets” and “strengths” as well as “deficits”. For example, one person commenting on a piece I wrote in the Guardian remarked similar to, “We don’t need to worry about this patient lying on the operating theatre table with advanced pancreatic cancer. She has great teeth.

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But I strongly believe that it is not difficult to slip into the patronising ‘does he take sugar mentality?’ I don’t wish to turn the medico-legal concept of ‘paternalism’ into a “dirty word”, but, as for our experiences with individuals with special needs, it is a slippery slope to outright dehumanisation and depersonalisation.

I never really understood what it was like to lose your sight until I went blind in one eye last year – but this was surgically operated upon with success. Likewise, I think many of us think we won’t be the ones who get diagnosed with cancer or dementia. But the law of averages means that some of us will be.

And we should think about how “we” would feel if “other people” talked about “us” like that.

@dr_shibley

The morality of dementia ‘awareness’ while imposing swingeing cuts



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The actual reality has been bleak, apart for those for whom ‘dementia awareness’ pays off their mortgages.

In September 2018, the Guardian featured an article on the cuts to social care:

“Nearly all the austerity-era funding cuts to services supporting poor families have fallen in the most economically-deprived areas of England, potentially trapping them in a “downward spiral” of poverty, according to new research. Council areas in the north and Midlands, together with a handful of local authorities in London, have shouldered 97% of the reductions in town hall spending on working age social care, looked-after children and homelessness since 2011, the study says.”

The cost of the ‘Dementia Friends’ programme was always eye watering.

As this press release from 2012 provided,

“Launched the £2.4 million programme, led by Alzheimer’s Society and funded by the Cabinet Office and the Department of Health, to deliver the nation’s biggest ever call to action on dementia to create one million Dementia Friends by 2015.”

I still have deep reservations about ‘cloning’ millions of people to be ‘aware’ of dementia in such a pre-scripted formulaic way.

Take for example this script of how to conduct a ‘Dementia Friends’ information session which can be easily found on the internet. The approach leaves little room for any creativity and innovation by local people to promote awareness of dementia. If there are about 900,000 people in the UK with dementia, you would have thought that they would have had their own personal views of dementia they’d like to share.

But the truth is – this was a massive marketing exercise for the Alzheimer’s Society, with deeply unpleasant political motives. Dementia Friends was never delivered in a genuinely organic way as a social movement. A huge amount of money was put into ‘marketing dementia’ as this press release reveals. There was never any “empathy” as this recent piece from the Harvard Business Review on the topic of change suggested.

In all the intervening years, there has never been an independent report on the return of investment of this programme, despite many many calls for such an analysis of whether the millions of pounds invested ever had any return socially or otherwise.

Take for example the aims of the “marketing programme”:

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What have been the tangible results of this? Do the public think or feel any differently about dementia? Has there been a greater sense of social connectedness between people with dementia, carers and others, despite the drastic cuts imposed through austerity in government policy? Has there been any significant upskilling of the workforce in health and social care in dementia?

What ‘dementia friendly’ means has always remained elusive.

It’s even to me, the full carer of a wonderful person – a mum who happens to live with dementia and who requires now full-time care.

It has never convincingly been presented as anything other than a better ‘customer experience’.

Take for example this claim from quite early on:

“When the dementia friends scheme was still in the planning stages, the aim was announced of signing up 200,000 people who, by doing so, would be making a pledge to become ‘dementia-friendly’ contact points for customers they encounter who are living with the condition. With the number of employees having confirmed their support already surpassing 400,000, however, it is clear that the programme is set to be a big success across the country.”

The five core messages of ‘Dementia Friends’ are not beyond reproach either.

Dementia is not a natural part of ageing.
Dementia is caused by diseases of the brain.
Dementia is not just about losing your memory.
It is possible to live well with dementia.
There is more to the person than the dementia.

As you get older, you have an increased chance of developing dementia. With the drive for dementia diagnoses, there has inevitably been more people who have misdiagnosed with dementia when in fact they did have ‘normal ageing’. We know dementia is caused by diseases of the brain, and it is not just about losing your memory – but it would have been sensible at this point to give a brief explanation of the other types of dementia, particularly for those below the age of 65. It’s simply not good enough to say ‘it’s not just memory’. I would never say, as a complete explanation, a ‘supermarket is not simply a delicatessen counter’. That statement provides no information about what a supermarket actually is. Likewise, the statements are consistently half-truths. It is, I am sure, possible to live well with dementia, but it’s also possible for the person with dementia and carer (and others) to suffer enormously, with the emotional pain of not recognising familiar people, not being able to do simple tasks like writing a cheque and so on.

There is more to the person than the dementia is a hollow campaigning slogan when delivered by advocates and charities who relentlessly do not embrace the issue of other social determinants of health, nor indeed any other comorbidities, but want everything to be viewed through the dementia campaigning focus. For example, a simple irregularity is the issue that dementia-friendly communities or behaviour should be friendly to all, unless you genuinely believe that people with dementia are sufficiently homogenous and do not live with any other diversity in their diagnosis or social determinants of health?

Currently, there are nearly 3 million ‘Dementia Friends’.

And my genuine reaction is “So what?”

 

 

@dr_shibley

 

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Ticking boxes and snazzy campaigns won’t be sufficient to improve ‘dementia rights’


May 31, 2018 5:50 pm / Leave a Comment


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Cited in a OECD report, it is reported that half of all people with dementia may have experienced verbal, physical or psychological abuse or neglect at some point.

 

We feel strongly that the discussion of ‘dementia rights’ is very serious, and far too important to be left to marketing leaflets.

 

Dementia rights affect many people, such as carers or care home managers, but not least people living with dementia themselves.

 

And yet it sometimes feels as if ‘dementia rights’ have primarily been interpreted according to the needs of the people other than those living themselves with dementia.  And, disturbingly, there is no distinction between ‘consumer rights’ and other rights.

 

A wider of range of people should be involved in the future discussions of rights. There are burning issues to discuss, such as glaring inconsistencies in current law. What about those who have agreed to hospital admission, or at least show no signs of objecting to it, but who may still be deprived of their liberty in various ways – for example residing in a locked ward?

 

We know in theory that every effort should be made to prevent the need to deprive someone of their liberty. It must be used for the minimum time possible. The legislation is supposed to protect vulnerable people. But why the perpetual schism between rhetoric and reality?

 

The English Law Commission’s own recent report“372 Mental capacity and deprivation of liberty” noted that:

 

It is concerning that people often do not feel safe, treated with dignity or that their human rights are respected whilst detained.”

 

Dignity is an essential intrinsic part of human rights law. It is not merely an ‘adjunct’.

 

In response to the war’s atrocities, the UN’s universal declaration of rights in 1948 provided that “all human beings are born free and equal in dignity and rights” under its article 1.

 

But Catherine Dupré comments:

 

Protecting and defining dignity through human rights law is not always a straightforward business, especially because it often raises, in the words of the European court of human rights, a question of civilisation.”

 

It is critical now that we have an inclusive, wide-ranging debate, about how to progress. For example, an independent reviewhas set up for England and Wales, led by Professor Sir Simon Wessely, to look not just at our mental health laws, but also how they interact with services, good practice and the wider care system.

 

We must concede that changing legislation alone will not be enough to improve the lives of people affected by dementia, but, still arguably, a wider range of people with dementia and care partners should still have a seat at the table while this legislation is being changed.

 

In the “competence model”, a patient with dementia might be deemed incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient.

 

But this does not appear consistent with article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD).

 

It seems that CRPD article 12 makes it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired mental decision-making capacity and requires the replacement of all regimes of substitute decision-making by “supported decision-making”.

 

The crucial difference is, therefore, that the “UNCRPD states that everyone with a disability should enjoy legal capacity on an equal basis with others in all aspects of life.”

 

Whatever local focus groups and tick-box “engagement meetings” take place, it is essential we have a thorough discussionof ‘dementia rights’ including specialists in law and dementia care, especially when so much is at stake. This is especially important as there are so many valid voices and actors in the ‘civil society’.

 

As the experience of Dementia Alliance Internationalshows, “nothing about us without all of usneeds to be more than a slogan.

 

@dr_shibley

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Dementia friendly communities are more than the customer experience


February 3, 2018 9:42 am / Leave a Comment


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For some reason, the terms ‘person experience’, ‘patient experience’ and ‘customer experience’ have become conflated to a rather unhelpful degree.

I would like to be careful how I say this, though, because we do know that bad customer experience does exist for people living with dementia and care partners, and guidance or standards can help.

Corporate marketing can give high street brands a helping hand with adding competitive advantage, by making them more ‘dementia friendly’, and in return these high street brands can give a bit of marketing for the charity in return.

This is, of course, not the time for cynicism. ‘Dementia friendly communities’ have also in a more recent configuration which emphasises a rights-based approach.

I’ve often felt that the rights-based approach gets confused with party A taking party B to court over matter C, but they are much more of a question of a rights consciousness. The PANEL principles were originally proposed to articulate this rights-based approach, and are summarised here.

PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.

I have seen with my own eyes the subtle, and indeed not-so subtle, discrimination of society towards people with dementia. This is disappointing as the Prime Minister Dementia Challenge was fist introduced five years ago.

I might be standing in a room with my mother, known to have a diagnosis of mixed Alzheimer’s and vascular dementia, and a third person can often completely ignore her because of her diagnosis.

For all the millions of ‘Dementia Friends’ which have been created, the question remains whether a genuine cultural shift in attitudes has existed. Various unknowns exist, including how bad things would have been if there had been no public awareness campaign for dementia.

A significant problem which pervades all the work looking at whether there is merit in the dementia friendly communities approach is knowing how much time to give the dementia friendly communities to ‘take effect’.

Participation is something which can be looked at directly. Democratic inclusion is a matter of principle, and it would be interesting to know how many people with dementia, including in care homes, are actively supported to vote. This might involve making reasonable adjustments for participating in the voting process.

Many of these aspects can be looked at also by looking at how many persons with dementia, now patients of the NHS, are able to secure a GP appointment in the festival of ringing up at 8 am when the GP opens. Many barriers might exist, such as being oriented to the time, remembering the GP number, recalling the purpose of the appointment, and so on.

The scale of ambition is also worth looking at. We could look at how many providers are providing NHS information in an accessible manner, but this is venturing into the area of competitive advantage, especially where providers in dementia services exist in a private market.

But what is interesting, with the problems in legal aid and access to justice aggravated from 2012 especially, is how many persons with dementia on receiving a diagnosis are able to secure a lasting power of attorney.

Again, we would expect a significant difference right now between communities which are ‘dementia friendly’ and those which are not.

So, in summary, I feel that the focus on customer experience in high street shops is a bit of a canard, and wider issues of access to health, access to justice,  access to health or participation in the democratic process should have been tangible benefits of ‘dementia friendly communities’ by now.

 

@dr_shibley

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Time to call out dementia friendly cronyism


January 20, 2018 10:28 pm / Leave a Comment


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Whenever there is a restricted number of participants in a crowded market, the quality of the product tends to fall as the participants collude with another.

The botched performance of Carillion is a reminder that it’s often the same people on the same management boards of the same companies supposedly competing with another. And it’s the same for certain charities, with the same workforce with different operating brands, simply faking diversity, but in reality offering zilch thought diversity.

Dementia is not of course political, unless you include the ‘chosen ones’ performing very well in the Queen’s Honours List. I really feel it’s time to call out the nonsense of certain ‘dementia friendly’ brands, such as ‘dementia friendly emergency departments’.

I actually have no ideological objection to an enhanced ‘customer experence’ of a patient in an emergency department, but the hijacking of ‘dementia friendly’ a certain way has led to this construct meaning a better customer experience rather than, say, promoting the health of people with dementia and care partners.

There is a ridiculous secondary gain for charities to award scarce resources to fund research into dementia friendly emergency departments so that a few press releases can go out to comfort us all. Forget people with dementia dying while waiting for hours for an ambulance. Ignore people with dementia waiting for hours on a trolley waiting for a hospotial bed, or waiting for hours for transport to go home.

I am basically appalled by how relaxed some principal investigators in research, who are regulated by professional bodies, appear to be in declaring their financial competing interests when publishing academic papers, particularly in areas where these interests affect diagnosis or treatment of dementias.

I am worried how regulated professionals do not appear comfortable about speaking out about unsafe level of resources for dementia care, particularly if they are worried about their research monies being threatened.

The sheer contempt for specialists in dementia seems to predate the hatred of experts which accompanied the Brexit debate. For example, I don’t feel that the culture is healthy enough for us all to have a meaningful debate without causing offence and outrage about the difference between minimal cognitive impairment and dementia, or the heterogeneity within dementia, when I know of at least two people with dementia who will have published books on living with dementia by the end of next year.

The atmosphere really has become quite threatening for some specialists now afraid to voice opinions, with tropes such as ‘people with dementia and care partners are the real experts’. As it happens, I am a full time carer of someone living with dementia too. But it worries me that in the forthcoming APPG consultation on ‘dementia rights’, something I myself wrote a book chapter on in 2015, it will be exactly the same usual suspects, with exactly the same ‘empowerment and engagement’ causing exactly the same stale predictable narrative.

But we do need people to speak out on important issues, on why certain people find it so difficult to obtain an assessment for legal power of attorney following diagnosis, or how people with dementia might interact with the law if it feels that certain decisions need to be made in their ‘best interests’.

We need to discuss whether people have equitable access to medical and legal opinions. Simply airbrushing these discussions due to convenient pseudo-consultations which don’t ask the right questions from certain people, because of dementia friendly cronyism, is not right.

I think the atmosphere of how dementia care and research are evolving is really not right at the moment, and needs urgent attention. It’s when it’s a case of ‘who you know’ rather than ‘what you can contribute’ then you need to worry.

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Are we there yet? The road to the dementia cure is paved with biomarkers.


July 24, 2017 3:44 am / Leave a Comment


This was the CORRECT entrance – the Eastern entrance.

If you come to the ExCeL centre in anything other than a black cab, you will be circling the complex for hours before you set foot in an entrance.

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Make no mistake – this particular conference was intensely scientific. But it was nice to sink one’s teeth into the something other than the dividend-producing engagement and empowerment of the dementia industry.

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Being a card-carrying academic, I personally think there is a lot to boast about in terms of the quality of neuroscience being done globally for dementia. Unfortunately, the genuine advances in the socio-economic-legal policy are dwarfed by a vocal minority of people with massive egos, who have a pathological addiction to introducing themselves to members of their inner circle.

But the good guys were there in force – mainly my Specialist Registrars from 2002 who had now become Professors in dementia at Queen Square.

Take Jonathan Schott.

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Or Huw Morris.

(I was especially glad to hear there is now a palliative nurse specialist in the progressive supra nuclear palsy service.)

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Prof Martin Rossor – our boss – in fact tapped me on the shoulder as I was walking along one morning. I thought it was a security guard at first!

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So there are many reasons to be cheerful.

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#AAIC17 for me was total heaven. The enthusiasm of the researchers was authentic and deep, and the camaraderie was inspiring. I still think this was one of the best slides in the whole conference, presented by Prof Philip Scheltens.

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The mild cognitive impairment (MCI) continues to be rather fraudulently in my opinion as a ‘staging post’ to dementia, and there indeed to be some professionals who cannot even tell the difference between MCI and dementia. This is rather worrying.

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The narrative of the ‘conversion’ has been far too overblown – with nearly hyperbolic remarks on its importance in the lifecourse trajectory in the Lancet Commission which emerged at the end of the conference. The Commission curiously contained a reference to mild behavioural impairment – legitimising of course the self-entitled pronouncements of the medical profession of ‘what is normal’ when it comes to behaviour or cognition.

I agree with the Aunt Sally argument that there is some behaviour which is clearly abnormal (though in Cambridge it was hard to tell as there were indeed some people who had won the Nobel Prize more than once).  But one has definitely to be worried about human beings being drugged up to the eyeballs for being a ‘bit apathetic’ or a ‘bit depressed’, on the off chance he or she might develop dementia one day.

I found the Conference quite relaxing, like some package holiday one had been waiting patiently for for months.

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My questions at the poster sessions ranged from ‘Where do you park your car at Addenbrooke’s?’ to ‘How long does it take you to do a lumbar puncture?’ Unfortunately, the young postdoc had no idea how long lumbar punctures took, despite her poster being all about CSF TDP43 markers and diagnosis – but she knew the junior doctor had done them all for her.

This is in a sense how idealised and pie-in-the-sky some of the international research has become – the need to focus on a chemically accurate diagnosis, whatever the symptoms are.

Like everyone else, I was there to flog something – my book in fact – available from all good bookshops, but possibly not from the Big Charity in dementia as yet.
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And this person is a genuine ‘consumer’ of books of mine and Kate Swaffer, who sits on the World Dementia Council and is CEO of ‘Dementia Alliance International’ – the largest stakeholder group of people living with dementia in the world, the partner organisation of Alzheimer’s Disease International.

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It was great to see Kiki from Kenya, who is doing great work on the World Dementia Council – and also a friend of ours.

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Everyone knows that the current state of the amyloid hypothesis is a mess – for example, “the drugs don’t work” and there are people around who have loads of amyloid plaques and better cognition than you or me. But why spoil a good story? The feel good factor, like you get in a Billy Graham convention, is of course what conference goers in dementia lap up.

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It was nice to see the Lewy Body Society – they have ALWAYS supported my work, and included me. And I am interested very much in Lewy body dementia, and I think Prof Ian McKeith is great.

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The members of the Alzheimer’s Research UK team were fun all week – and it was great to see Hilary Evans (and George).

The work being funded by ARUK in neuroscience is of course a complete contrast to the lack of good neuroscience, apart from on cholinesterase inhibitors, which emerged in the Lancet Commission on dementia. The Lancet Commission on dementia seemed to confuse seamlessly whether the authors were discussing Alzheimer’s disease only at one minute, or >100 different types of dementia at another minute. But then again – for some researchers – the Alzheimerisation of dementia was complete long ago.

There was barely any sensible comment on the neurobiology of sleep in dementia, for example, the mechanism by which sensory impairment might lead to Alzheimer’s disease or any other form of dementia, or any meaningful biological mechanism of ‘cognitive reserve’ even though discussed at some length.

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But I really  should’ve been concentrating on the basics – as for half of the week, I entered the ExCeL centre through the wrong entrance.

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This was, however, one of my favourite posters. There is much to be said about how genes, prominent in the development of the human central nervous system, behave in dementia. I know notch-3 because of its rôle in vascular cognitive impairment, specifically CADASIL, but I found Lavinia Alberi Auber’s work as a PI brilliant.

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Lavinia was extremely knowledgeable about notch (and Wnt and wingless) as you’d expect her to be.

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This was another amazing poster by Kirsty McAleese.

Definitely a star in neuroscience for the future.

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The importance of the poster for people interested in how the parietal cortex goes wrong in posterior cortical atrophy cannot be overstated.

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I’m a huge fan of the work of Prof Seb Crutch – so I was immediately drawn to these striking results on the neural substrates of posterior cortical atrophy.

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Kieran presented his brilliant work on the factors affecting the prescription of anti-psychotics.

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The content and tones varied a lot – so one minute it was Kirsty’s poster, and then it was Assoc. Prof. Lee Fay-Low with a sensational talk on dementia policy.

Seeing Prof Henry Brodaty walking around was exciting as seeing Bob Dylan in person.
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It was great to see some familiar friends, and now good friends, like Prof Dawn Brooker.

Dawn promised to help me with the parts of my new book ‘Essentials of dementia’ I’m doing with Prof Rob Howard that Dawn proposed herself – like “The VIPS model”. We ended up having quite a relaxing chin-wag about Namaste care and the issues of ‘process consent’ (but how Prof Jan Dewing’s work had helped a lot.)

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I looked carefully at Barbara’s poster on behalf of some geriatricians who strongly support the bedside ‘clock drawing test’ for dementia.

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With the ‘greater awareness’ of dementia (however-so defined), there is going to be a varying perception of risk.

I’ve always liked Dr Richard Milne since we first met in Newnham College in Cambridge for a mini-conference on dementia.

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And his poster was a crowd puller – as well as really important work if we want to get people interested in slowing the progression of dementia in those people who’ve been newly diagnosed with it.

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One hopes that the urge to publish something ‘big’ on dementia during #AAC17 was not primarily due to the lack of progress on novel neuropsychopharmacological cognitive/behavioural interventions (and a big Phase III trial result) – but of course I would never be so cynical.

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It makes intuitive sense that dementia develops long before the existence of symptoms. In other words, brain changes which lead to dementia are already setting foot in people when they are young.

But the problem with framing it as ‘this can prevent you from getting dementia’ argument is precisely what somebody living with Lewy body dementia once told me – “Shibley, I did none of that, and I still have dementia.” It is far better to frame the approach as risk reduction.

Baroness Thatcher and Harold Wilson were both highly educated Prime Ministers, having gone to a University called Oxford University.

And they both developed dementia.

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There will be people who live ‘virtuous lives’ and who still go onto develop dementia.

How?

Why?

Quite amazingly, there is no mention of “determinants” in the main body of the text – and inequalities is only mentioned once in the text of the Lancet commission. This is simply not acceptable if one is taking seriously a life course analysis.

I was left genuinely wondering whether this Venn diagram from the Lancet Dementia Commission could’ve been easily adapted for frailty – but this thought is an artefact of the Commission consisting of the ‘great and good’ in that particular disease operating in rigid silos.

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For example, there as a huge amount on abuse in the Lancet Commission but nothing on deprivation of liberty safeguards. Academics work too in their own silos, promoting their own research grants too much, meaning that the work can too easily distorted and biased.

There is never any discussion of how the Wishlist for statistical analysis is derived (except the statement “We sought to calculate a combined PAF for known modifiable risk factors for dementia. We decided which risk factors to include by identifying those listed in the UK National Institute of Health and Care Excellence (NICE) and US National Institutes of Health (NIH) guidelines” is bordering on the too whimsical.)

There is never any discussion of the degree of independence of the factors (e.g. diet and diabetes), so consequently the results and discussion appear much more precise than they deserve.

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Prof Rob Howard’s talk was exceptionally useful – given how thorough and methodologically sound it was. But the acoustics were terrible.

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And the lack of sensible discussion in the talk and the paper on the factors affecting ‘social vulnerability’, such as the effects of poverty, poorly organised health and social care systems – genuinely troubled me. One of the questions in the audience alluded to whether the report was too medical – and I wonder about this too.

 

Even though the panel discussion of social vulnerability in the launch was poor in response to my question generally, Prof Alistair Burns correctly referred to the section of the paper which does indeed refer to social vulnerability – that is, of course, depression. (This impacts on social networks, loneliness and inclusion, discussed elsewhere in the paper.)

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There is no mention of “advance decisions” or the “United Nations Convention on Rights of Persons with Disability”, and only a mention of human rights in relation to abuse, which lead to me to conclude that the The Lancet Dementia Commission did not understand at all the legal field of substituted decision-making and the full importance of autonomy.  But having said that the discussion of advance care planning, and the importance of palliative care/end of life, was exemplary in my view.

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If you’re genuinely interested in research, this conference is really for you. I had a thoroughly enjoyable and all too brief chat with Prof Ken Rockwood. Ken’s work is extremely well known to me – and I am particularly looking forward to discussing the work of Ken and of colleagues in Dalhousie University, Nova Scotia, in my book ‘Frailty: from assets and deficits to resilience’ for next year (Prof Ken Rockwood and Prof Adam Gordon are doing the forewords.)

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It was great to meet people I’d never met before – including Dr Joe Kane, a SpR in psychiatry with an interest in Lewy body dementia.

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Some people transcend all whinges I have – because they’re such decent people.

Chris Roberts is the best.

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@dr_shibley

Still Alice

My review of the film “Still Alice”


February 11, 2015 9:49 pm / Leave a Comment


Still Alice

This evening, I asked someone living with dementia whether he recommended I should watch “Still Alice”. He is yet to see the film.

He emphatically said, “yes”. In fact, he informed me that he would indeed buy the film if he thought it was any good.

“Still Alice” is a 2014 American drama film written and directed by Richard Glatzer and Wash Westmoreland and based on Lisa Genova’s 2007 bestselling novel of the same name. The film stars Julianne Moore in the role of Dr. Alice Howland, a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease.

Alec Baldwin plays her husband John, an ambitious medical researcher. Kristen Stewart, Kate Bosworth, and Hunter Parrish play her children Lydia, Anna, and Tom.

I was not looking forward to watching this film at all, despite its brilliant reviews. In a way, the film is in a ‘no win’ space of having not to over-glamourise dementia, and yet simultaneously not to depict it in overwhelmingly negative terms.

As someone who has been an academic and/or practitioner in this field since 1997, I really think the film is an excellent attempt at this very difficult topic.

No one person’s experience of dementia is the same as somebody else’s; and your perception of that person with dementia will depend on a huge number of factors, not least your own preconceptions and the coping strategies of the person living with dementia. The portrayal of Dr Alice Howland is completely believable though.

Dementia doesn’t just affect old people; although your risk of dementia increases as you become old.

The film is to be praised for emphatically demonstrating that the diagnosis of dementia affects friends and families, and not simply a person in isolation. Whilst the character Dr Alice Howland is initially told the possible diagnosis alone, it is clear that the whole family becomes involved.

There is a sense of the ‘prescribed disengagement’ which Kate Swaffer, living with dementia in Australia, has so graphically described. All too often the diagnosis of dementia is articulated as an ‘end’ rather than a beginning. I inevitably watched the film through the prism of how much it promoted the notion that it is possible to live better with dementia.

The effect on work in this particular story is interesting. I am mindful of other criticisms that portraying her as a linguistics professor is over-egging the topic somewhat, but reality can be larger than life. Prof John Hodges’ team in Australia, as is known publicly, was involved in charting the change in language profile of Iris Murdoch, renowned author and wife of Prof John Bayley who has recently sadly passed away.

In someone presenting with a clinical picture of early Alzheimer’s disease, with that particular distribution of abnormal amyloid protein in the brain (although we are not given precise details), as shown by PET neuroimaging, it might be entirely reasonable to seek out a genetic diagnosis such as a presenilin mutation. I realise that Dr Alice Howland is a fictional character, but the issue of how the issue of certain types of dementia might run in families is a very active one both in the US and here in the UK.

I quite liked the use of internet chat in the film. All around the world, there is interest in the intelligent use of technology to connecting unique individuals with dementia to others, and indeed to their past through the method of ‘life story’.

No film on this topic would be expected to be anywhere near perfect, and some of the issues will be raw for many, such as the choice of care homes and behaviour in them. However, I think that this film is as a good attempt as any to cover some hugely important issues. I also think the acting in the film is simply beautiful.

Dementia graphic

“Living better” with dementia is desirable, but what does it mean for care?


January 25, 2015 1:33 pm / Leave a Comment


Dementia graphic

After having thought about it for more than one year, I’ve concluded that the term ‘living well with dementia’ is not the right one. For a start, it implies some objective, sometimes unattainable, standard. Also, I feel that some people are clearly not well with dementia with the dreadful state of post-diagnostic care and support in some parts of the country, or personal symptoms which are difficult to manage (not living well with dementia from a lack of ability to communicate verbally, or intense ‘night terrors’). Each person living with dementia is more than the dementia, and I am mindful of not projecting an over sanitised portrayal of the dementias.

Somebody I truly admire in her work and general campaigning on dementia is Beth Britton. Beth has already made a huge impact in the co-production group at the CQC, and will, I am sure, make a massive impact on the Carers’ Commission. Having founded D4Dementia in May 2012, the blog was a finalist in the Roses Media Awards 2012 and has developed a huge following in the UK and internationally. The blog is genuinely loved and supported by thousands of families, carers, people with dementia, health and social care professionals, policy makers, leaders and anyone looking for a highly informative, personal and authoritative perspective on dementia.

I will publish my book ‘Living better with dementia: looking to the future’ later this year (around June – July 2015) with Jessica Kingsley Publishers. I feel that this book, although adopting both a domestic and international viewpoint, fits in very nicely with Beth’s corpus of impressively high quality work.

 

Chapter 1 provides an introduction to current policy in England, as it currently stands, including a review of the need for a ‘timely diagnosis’ as well as a right to timely post-diagnostic care. This has been a vocal concern of Baroness Sally Greengross, the current Chair of the All Party Parliamentary Group for dementia.

In England, the issue of the ‘timely diagnosis’ is an exquisitely sensitive one.

We’re lucky Beth, Ming Ho and Sal Marciano have contributed to this debate: viz:

Other carers, Beth Britton, Sally Ann Marciano and Ming Ho contributed their experience emphasising that support is essential and that good outcomes for the whole family, in addition to those of the person with dementia, should be taken into consideration.

This chapter also provides an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run very successfully by the Alzheimer’s Society and Public Health England, to raise awareness about five key ‘facts’ about dementia. It was intended that this campaign should help to mitigate against stigma and discrimination that can be experienced by people living with dementia and their caregivers. The ‘proof of the pudding’ will come when the outcome of turning communication into action is assessed objectively.

 

Chapter 2 comprises a preliminary analysis of stigma, citizenship and the notion of ‘living better with dementia’. This chapter explains the urgency of the need to “frame the narrative” properly. This chapter also introduces the “Dementia Alliance International” group, which has fast become a highly influential campaigning force by people living with dementia for people living with dementia.

It is hoped that openness in discussion will help to mitigate against a deeply entrenched stigma by some.

Beth advises, in the Huffington Post, that:

As Margaret Thatcher joins the many people with dementia who have passed before her, and debates rage about her political legacy, I would argue that this is a time to talk as openly about her most recent experiences as it is to reflect on her career. An opportune moment for us all to think about what having dementia means, whether you are a former prime minister, a doctor, a professor, a grocer, a bus conductor or a refuse collector. Dementia brings a whole new meaning to being ‘all in this together’.

 

Chapter 3 looks at the various issues facing the timely diagnosis and post-diagnostic support of people living with dementia from diverse cultural backgrounds, including people from black, Asian and ethnic minority backgrounds, people who are lesbian, bisexual, gay or transsexual, and people with intellectual difficulties. Attention is paid to the various intricate ways in which exact culture can impact not only on the timely diagnosis of dementia but also in the post-diagnostic care.

 

Chapter 4 looks at the issue of how different jurisdictions around the world have formulated their national dementia strategies. Examples discussed of countries and continents are Africa, Australia, China, Europe, India, Japan, New Zealand, Puerto Rico and Scotland. There is remarkable convergence in the efforts of various jurisdictions, and it is here I first introduce the critical importance of collaboration. A major plus here has been the contribution of the Alzheimer’s Disease International in their work on the need for national dementia policies, and how to implement them.

 

Chapter 5 looks at the intense care vs care debate which has now surfaced in young onset dementia. There is a potentially problematic schism between resources being allocated into drugs for today and resources being used to fund adequately contemporary care to promote people living better with dementia. An example is discussed of how the policy of ‘Big Data’ had gathered momentum across a number of jurisdictions, offering personalised medicine as a further potential component of “person-centred care”.

This chapter also considers the impact of the diagnosis of younger onset dementia on the partner of the person with dementia as well. It can never be considered that a diagnosis is given in isolation:

As Beth remarks,

For us, devoid of any additional support or resources, we simply had to learn about dad’s dementia as it progressed, inevitably making mistakes along the way, but always trying our best to understand what his life was like and what he needed. Through the work I do now, I aim to use that knowledge to improve the lives of all those who are touched by dementia, increasing awareness and education in society as a whole, and transforming the care given to people with dementia and their families.

A candid description in my book was also given about the possible sequelae of the diagnosis of young onset dementia on employment, caregivers, and in social isolation.

 

Chapter 6 focuses on delirium, or the acute confusional state, and dementia. It attempts to explain why delirium and dementia might converge in policy, after all. There are general issues of whether it is possible to inject incentives into the system at critical points. However, in parallel with this, there is an active debate as to why delirium (however so labeled) is not picked up sometimes in hospital, why people who experience an episode of delirium can do quite badly in the long run, and what to do in the special case of a person living with dementia with delirium superimposed on that.

 

Chapter 7 is the largest chapter in this book, and takes as its theme care and support networks. I make no apologies about the length of this chapter, as I have been hugely influenced by the Dementia Action Alliance Carers Call to Action in the last year.

Beth comments that:

Most carers are totally unprepared for what caring will involve and have no idea when their caring role will end. They often ‘fall into’ caring, simply by taking on small responsibilities that escalate, triggering experiences that untrained family carers can find very difficult to cope with.

There is huge interest internationally in the subject of ‘what makes a good care home’, as Beth comments:

For me the gold-standards that every family should be looking for from a care home are person-centred care, compassion, dignity and respect. You want to know that your loved one will be treated as an individual in every possible aspect – not just another box to tick on a care plan. You also want to know that they will have access to anything and everything that constitutes therapeutic dementia care, and not just a range of set ‘activities’ that they have no interest in participating in.

The idea of families and professionals working side by side is a very powerful one.

Beth takes this idea up here:

This shows that when families and professionals work side-by-side it often creates a unique, and holistic, model of care. Relatives can also benefit from the support and knowledge that professionals caring for their loved one can provide in challenging times.

It should never be the case that those who have spent years being educated in their subject feel that their clinical training and evidence based approach carries greater weight, or that families adopt the viewpoint that their emotional ties and personal experience is all that is needed to effectively care for their loved one.

 

In my book, an overview of how patient-centred care is different from person-centred care is given, and how person-centred care differs from relationship-centred care. I feel, personally, that the literature has thus far excessively focused on the ‘dyadic relationship’ between the person with dementia and caregiver, but a need to enlarge this to a professional in a ‘triangle of care’ and extended social networks was further elaborated and emphasised.

Different care settings are described, including care homes, hospitals – including acute hospital care, and intermediate care. This chapter first introduces the critical role of clinical nursing specialists in dementia in providing proactive case management in a person-centred care philosophy.

However, Beth is right, in my opinion, to bring up the notion that “care homes are not police states“; rather care homes could be open to scrutiny whilst being part of an extended community.

Britton has her suspicions about the events that led to this crisis, but she is unable to prove them. Based on that experience, she supports the idea of CCTV in care home rooms on an opt-in basis: “A camera might not have saved his life, but it would have told us what happened. However, I don’t think they should be put everywhere for everyone. We don’t want to turn care homes into a police state.”

 

Chapter 8 considers eating for living well with dementia. This chapter considers enforceable standards in care homes, including protection against malnutrition or undernutrition. The main focus of the chapter is how people with dementia might present with alterations in their eating behaviour, and how the mealtime environment must be a vital consideration for living better with dementia. Eating well with dementia is clearly not all about finger snacks and the such like.

 

Chapter 9 looks at a particular co-morbidity, incontinence. Focusing on the various co-morbidities will be an opportunity of a whole person approach for a person living with dementia, during health as well as illness. The emphasis of this chapter is on conservative approaches for living well with dementia and incontinence. Other issues considered here are the impact of incontinence on personhood per se, and the possible impact on the move towards an institutional home.

Incontinence for a person living well with dementia is not all about pads. We have to, as a society, wish to talk about incontinence for people living with dementia, and I am hoping this chapter is a help.

I feel Beth has been instrumental – in her work – in breaking down societal taboos, for example:

How do you feel about the idea of needing someone to dress you, wash you, help you to the toilet or change your incontinence pads, feed you, give you medication, move you around, and enable you to watch the TV programmes of your choosing or listen to the music that you love?

This is day-to-day life for the many people who receive care. Such dependence can happen at any age, but it becomes more likely as you get older, making the need for care something people fear the most as they approach their mature years.

 

Chapter 10 argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service in the form of “whole person care”. This chapter provided the rationale behind this policy instrument in England. This chapter argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service. Currently too many NHS patients cannot be discharged out of social care in a timely fashion.

We certainly do need to be looking forward to the future now.

As Beth says,

In 15 years’ time we must have a health and social care system that is (finally) fully integrated. The UK should be leading the way in providing aged care, and recognising and fully supporting the role of family carers. More broadly, I want to be living in a society that makes ageing something we embrace and nurture, not something to be sneered at, marginalised and locked away.

 

Chapter 11 considers the importance of the social determinants of health. The framework, I argue, is eminently sensible for organising one’s thoughts about dementia friendly communities. The focus of this chapter is housing. I focused on design of buildings in my previous book ‘Living well with dementia’, but I wished to articulate here the wider context of the importance of housing for a person living well with dementia. Housing for living well with dementia is not just about buildings, and is pivotally enmeshed with the person centred care philosophy of projected English policy.

 

With such a broad brush tool as equality and “dementia friendly communities”, the scope for squashing diversity is enormous. Few topics enter the realms of “one glove does not fit all” to the same degree as the potential use of global positioning systems for dementia. Chapter 12 considers whether ‘wandering’ is the most appropriate term. The main emphasis of this chapter is the legal and ethical considerations in the use of ‘global positioning systems’ in enhancing the quality of life of persons with dementia and their closest ones. A central theme of this chapter is what might be best for the piece of mind of the person in a caring role might not be entirely synchronous as the wishes of the person himself or herself with dementia. To show how extreme the term “wandering” potentially becomes, I am aware of some friends of mine living with dementia who simply wish to go for a pleasant walk, but are frightened of being labeled as “wanderers”.

 

Chapter 13 considers head-on a number of important contemporary issues, with a main emphasis on human rights and “rights based approaches”. While there is no universal right to a budget, the implementation of personal budgets is discussed. This policy strand is indeed very complex. The chapter progresses to consider a number of legal issues which are arising, including genetic discrimination in the US jurisdiction, dementia as a disability under the equality legislation in England, and the importance of rights-based approaches for autonomy and dignity.

Nonetheless, “personalisation” remains a powerful strand in policy across many successive governments.

As Beth notes – in an apolitical way:

The first and most important thing to stress is that everyone is an individual, so what works for one person won’t work for another. True quality of life is only achieved through personalisation, therefore it is vital that everything you help someone with dementia to do, achieve or enjoy is what they have or would choose for themselves.

 

Too often the debate about dementia can be engulfed in a diatribe about ‘cost’ not ‘value’. Persons living better with dementia wish to contribute effectively with the outside world, and the feeling is mutual. Chapter 14 is primarily concerned with art and creativity, which can be incredibly empowering for some people trying to live better with dementia. This chapter takes as its focus on how living with dementia could lead to art and creativity. This chapter also looks at the exciting developments in our understanding of the perception of music in people living with dementia, and why music has the potential to enhance the quality of life for a person living well with dementia through its intrinsic features as a reward.

 

Too often the focus in international policies is on medications.

I believe the interest in ‘reminiscence’ is very well deserved.

Beth describes it thus:

Dad’s room was filled with pictures, cushions depicting farmyard scenes and life-like soft toy animals – everything chosen because it told some part of his story. At the heart of that was dad’s memory box displaying captioned photographs charting dad’s life from his birth to mine, alongside emblems that represented his home county and favourite football team.

All of these reminiscence therapies combined to keep dad’s identity alive, much in the same way that resources like Memory Bank can do for people who are living with dementia today. These aids help to focus on the uniqueness of the individual, and provide focal points for conversation that ensure each person’s story is brought to life.

Chapter 15 looked at the triggering of football sporting memories in people living well with dementia. This chapter considers the cognitive neuroscience of the phenomenon of this triggering, and presents a synthesis of how the phenomenon could be best explained through understanding the role of emotional memory in memory retrieval, how autobiographical memories are represented in the human brain usually, the special relevance of faces or even smells such as “Bovril”. The triggering of football memories may have some neuroscientific commonalities with the triggering of musical memories, and it will be interesting in the future to identify carefully which people living better with dementia benefit from such reminiscence approaches.

 

Chapter 16 looks at the impact of various innovations in English dementia policy, giving as examples including service provision (such as the policy on reducing inappropriate use of antipsychotics or the policy in timely diagnosis) and research. This policy goes through the current evidence for this evidence in particular detail, and considers how culture change may be effected internationally for quality in this policy area. This chapter tries to convey the complexity of the issue, and to explain in a fair way why deep down in this policy plank are traditional concerns to do with ‘continuity of care’ and ‘valid consent’.

 

Chapter 17 looks at how leadership could be promoted by people living with dementia themselves. I first introduce the need for this in Chapter 2. Chapter 17 considers who might lead the change, where and when, and why this change might be necessary to ‘recalibrate’ the current global debate about dementia. This chapter considers how change might be brought about from the edge, how silos might be avoided, the issue of ‘tempered radicals’ in the context of transformative change to wellbeing as an outcome; and finally how ‘Dementia Champions’ are vital for this change to be effected.

 

Finally, I attempt a Conclusion at Chapter 18.

 

 

world

‘Living better with dementia': a global perspective


January 23, 2015 1:49 pm / Leave a Comment


My book, to be published in June 2015, is intended as a ground-breaking analysis of the challenges for living w ell with dementia, highlighting innovation and good practice for improving dementia care practice and policy in the future. What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people actually living well with dementia?

Adopting a broad and inclusive approach, I present a thorough critical analysis of existing dementia policy with emphasis on the English jurisdiction (but mindful of the global perspective), and I tackle 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.

world

Drawing on a wealth of diverse internally peer-revieweed research, and including voices from all reaches of the globe, I identify current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better w ith dementia in the future.

This is intended to be 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.

 

Synopsis

 

Chapter 1 provides an introduction to current policy in England, as it currently stands, including a review of the need for a ‘timely diagnosis’ as well as a right to timely post-diagnostic care. This has been a vocal concern of Baroness Sally Greengross, the current Chair of the All Party Parliamentary Group for dementia. This chapter also provides an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run very successfully by the Alzheimer’s Society and Public Health England, to raise awareness about five key ‘facts’ about dementia. Indeed, Prof Martin Prince, Dr Renata Bryce and Dr Cleusa Ferri had previously introduced the critical topic of “The benefits of early diagnosis and intervention” in the World Alzheimer’s Report 2011.

A focus of this chapter is inevitably on prevention and risk factors,  aligning itself well with the aims of the World Dementia Council.

Mitigation against loneliness remains a profound driver behind the policy of dementia friendly communities in global policy.

 

Chapter 2 comprises a preliminary analysis of stigma, citizenship and the notion of ‘living better with dementia’. This chapter explains the urgency of the need to “frame the narrative” properly. This chapter also introduces the “Dementia Alliance International” group, which has fast become a highly influential campaigning force by people living with dementia for people living with dementia.

Critically, it has just been announced people living with dementia will be more involved in the work of the Alzheimer’s Disease International.

The statement from ADI reads thus:

The Board has agreed to start collaborating with Dementia Alliance International (DAI), an independent international group of people living with dementia. This will be done with a Memorandum of Understanding (MOU), with ADI agreeing to support the expansion of DAI to increase representation of people with dementia around the world, including those in lower and middle-income countries.

Overcoming stigma has become a massive issue.

 

Chapter 3 looks at the various issues facing the timely diagnosis and post-diagnostic support of people living with dementia from diverse cultural backgrounds, including people from black, Asian and ethnic minority backgrounds, people who are lesbian, bisexual, gay or transsexual, and people with intellectual difficulties. Attention is paid to the various intricate ways in which exact culture can impact not only on the timely diagnosis of dementia but also in the post-diagnostic care.

Here, for example, the diagnostic algorithm of 10/66 has been particularly influential.

 

 

Chapter 4 looks at the issue of how different jurisdictions around the world have formulated their national dementia strategies. There is remarkable convergence in the efforts of various jurisdictions, and it is here I first introduce the critical importance of collaboration.

A new report, ‘Improving Dementia Care Worldwide’ (PDF), reviews existing national dementia plans from around the world, and puts forward recommendations for governments on what a best practice plan should include and how it should be developed and implemented. The report was commissioned by ADI and Bupa, and written by Prof Anne Margriet Pot and Dr Ionela Petrea from the Netherlands Institute of Mental Health and Addiction (Trimbos-institute).

 

 

Chapter 5 looks at the intense care vs care debate which has now surfaced in young onset dementia. There is a potentially problematic schism between resources being allocated into drugs for today and resources being used to fund adequately contemporary care to promote people living better with dementia. The needs of people with young onset dementia are certainly distinct.

Chapter 6 focuses on delirium, or the acute confusional state, and dementia. It attempts to explain why delirium and dementia might converge in policy, after all.

 

 

Chapter 7 is the largest chapter in this book, and takes as its theme care and support networks. I make no apologies about the length of this chapter, as I have been hugely influenced by the Dementia Action Alliance Carers Call to Action in the last year. The need to help carers is certainly writ large in global policy.

 

 

Chapter 8 considers eating for living well with dementia. main focus of the chapter is how people with dementia might present with alterations in their eating behaviour, and how the mealtime environment must be a vital consideration for living better with dementia. In 2014, the ADI published their report on nutrition and dementia.

 

Chapter 9 looks at a particular co-morbidity, incontinence. Focusing on the various co-morbidities will be an opportunity of a whole person approach for a person living with dementia, during health as well as illness. The transition to a residential/care home, for example, can be profoundly influenced by difficulty in managing unmet needs such as incontinence; so unsurprisingly the efficacy of conservative approaches at home has experienced renewed scrutiny amongst a number of different jurisdictions.

 

Chapter 10 argues how the needs for people living better with dementia would be best served by a fully integrated health and social care service in the form of “whole person care”.

The World Alzheimer Report 2013 went into a foray of the “journey of care”. One of the key recommendations was:-

Health and social care systems should be better integrated so that there are co- ordinated care pathways that meet people’s needs. Case managers (one for up to every 60 people with dementia) are likely to add value when working from the community, across the journey of care, as part of a fully integrated long-term care system for older people.

 

 

Chapter 11 considers the importance of the social determinants of health. The framework, I argue, is eminently sensible for organising one’s thoughts about dementia friendly communities. Housing for living well with dementia is not just about buildings, and is pivotally enmeshed with the person centred care philosophy of projected English policy.

This is a critical part of WHO policy. There is more work to be done here to align this (and WHO “friendly cities”, which has found considerable interest in Alzheimer Europe) with global dementia policy as regionally implemented in local jurisdictions.

 

With such a broad brush tool as equality and “dementia friendly communities”, the scope for squashing diversity is enormous. Few topics enter the realms of “one glove does not fit all” to the same degree as the potential use of global positioning systems for dementia. Chapter 12 considers whether ‘wandering’ is the most appropriate term. The main emphasis of this chapter is the legal and ethical considerations in the use of ‘global positioning systems’ in enhancing the quality of life of persons with dementia and their closest ones.

Chapter 13 considers head-on a number of important contemporary issues, with a main emphasis on human rights and “rights based approaches”. While there is no universal right to a budget, the implementation of personal budgets is discussed. Dementia being defined as an equality totally alters the nature of the narrative of discussion, and that these principles apply across the world is bound to attract interest (such as the UN Convention on the rights of persons with disabilities).

Too often the debate about dementia can be engulfed in a diatribe about ‘cost’ not ‘value’. Persons living better with dementia wish to contribute effectively with the outside world, and the feeling is mutual. Chapter 14 is primarily concerned with art and creativity, which can be incredibly empowering for some people trying to live better with dementia. I feel that arts-based therapies offers much untapped potential for the future.

Too often the focus in international policies is on medications. Chapter 15 looked at the triggering of football sporting memories in people living well with dementia. This chapter considers the cognitive neuroscience behind this.

 

 

Chapter 16 looks at the impact of various innovations in English dementia policy, giving as examples including service provision (such as the policy on reducing inappropriate use of antipsychotics or the policy in timely diagnosis) and research.

This is within the construct of a major worldwide drive to innovations in service provision and research (as for example described here in a report on a workshop on “Enhancing Translational Research and Clinical Development in Alzheimer’s Disease and other Dementia: The Way Forward”, held on 11-12 November 2014, Lausanne, Switzerland.

 

 

Chapter 17 looks at how leadership could be promoted by people living with dementia themselves. I first introduce the need for this in Chapter 2. Chapter 17 considers who might lead the change, where and when, and why this change might be necessary to ‘recalibrate’ the current global debate about dementia.

 

Finally, I attempt a Conclusion at Chapter 18.

 

hoverboard

Living well with the dementia app. Back to the future?


January 22, 2015 7:51 pm / Leave a Comment


Various inventions were predicted for 2015 in the film “Back to the Future”.

Of course, an invention is not the same as an innovation.

There is a subtle difference between these two words, but the difference is an important one.

An invention is the formulation of new ideas for products or processes, but an innovation is all about the practical application of new inventions into marketable products or services.

According to top HSJ pioneer, Dr Amir Hannan, innovation has a specific definition.

About doing or making something completely new that has never been done before, which leads to a material change in thinking, behaviour or outcomes.

One of the brilliant inventions/innovations was the “hover board”.

hoverboard

Probably a good thing these haven’t been invented for the mass market yet – though some clever bod has come up with a prototype – the baggy jeans and Converse look is just so Nineties.

 

 

The background to the modifiable factors relating to dementia are well rehearsed.

Approximately half of dementia cases might be attributable to known modifiable protective and risk factors (Smith and Yaffe 2014). The protective factors include the factors that determine brain development in early life such as maternal nutrition and health, and nutrition and cognitive development in early years. Education and lifelong learning also protect against dementia as does involvement in social networks. The risk of dementia is raised by substance abuse in adolescents and young people, head injuries and depression. Dementia also shares important risk factors with the major non-communicable diseases (NCDs) including cardiovascular disease, diabetes, cancers. These are the behavioural risk factors of physical inactivity, smoking, alcohol and poor diet, and the linked intermediate risk factors such as high blood pressure, raised cholesterol and obesity.

There has been some difficulty in getting this relatively simple public health message across.

This is illustrated, for example, by the rather resistant belief amongst people that ‘nothing can be done about dementia’. In fact, an enormous amount can be done to promote living well with dementia. And some factors may indeed slow rate of progression or delay onset, in a way we don’t properly understand yet.

Some campaigning initiatives have started to gain momentum, though. This infographic is from the Alzheimer’s Disease International “World Alzheimer Month”.

reduce the risk

And there are developments afoot in the provision of information for patients.

Here’s an example of what Highbury Grange Medical Practice seem to be offering.

The aim is for all patients in England will have access to their GP medical records online by 31st March 2015.  This means you can have secure access to relevant parts (current medications, immunisations and allergies)of your record from devices that can access the internet.

And now Sir Bruce Keogh has got really into ‘wearable technology':

It sounds reasonably convincing.

Prof Sir Bruce Keogh believes that gadgets similar to fitness trackers, which are growing in popularity, and others resembling games consoles will revolutionise the monitoring of patients’ health, especially those with a serious condition.

And…

“Technology is emerging which enables those to be brought together and transmitted through mobile phones or other methods where health professionals can analyse them and act upon any warning signs,” Keogh says.

Wearable technology could easily prove useful for people with heart failure – one of the most common causes of admission to hospital – and thus relieve the strain on overcrowded hospitals.

“I see a time where someone who’s got heart failure because they’ve had a previous heart attack is sitting at home and wearing some unobtrusive sensors, and his phone goes, and it’s a health professional saying: ‘Mr Smith, we’ve been monitoring you and we think you’re starting to go back into heart failure. Someone’s going to be with you in half an hour to give you some diuretics’,” says Keogh.

Technology “enables you to predict things, to act early and to prevent unnecessary admissions, thereby not only taking a load off the NHS but, more importantly, actually keeping somebody safe and feeling good”.

For people living well with dementia, simple apps could be made which could be installed on smartphones.

smartphone apps

For certain persons living with dementia, prone to “wandering” (a term I very strongly dislike), GPS location devices might be of interest; but by no stretch of imagination are these devices relevant to all people living with dementia.

The app might also be able to monitor aspects of cardiovascular health. There is a strong link between cardiovascular health and cerebrovascular health, and indeed the success of tackling cardiovascular risk factors in primary care has caused some interest in the possible falling in England of the prevalence of dementia.

I have often ‘complained’ to other specialists in dementia how little we know about how easily people living with dementia, across different types of dementia, at different extents of ‘severity’, cope with all technology designed to help them live with dementia.

But it is possible that such apps could be designed to be compliant with the Equality Act (2010), offering giant lettering for those people with visual object perception problems, or ‘read aloud’.

There could be a set of questions like ‘Do you have trouble remembering dates?’, ‘Do you have problems remembering phone numbers”, “Do you have problems cooking?”, which could trigger further intervention by a community occupational therapist.

If someone living with dementia notices their legs going stiff, or they have trouble walking, a referral to a community physiotherapist could be triggered.

If someone living with dementia notices the development of a ‘sweet tooth’, a referral to a community dietitian could be triggered.

And so on.

There might be ‘menus’ which are more suitable to caregivers, who are often spouses, or children (particularly daughter and daughter in laws), but including paid carers. There are clearly ethical issues here.

I anticipate such apps will be of interest to people who’ve just been given a diagnosis of dementia, but the usual criticisms will hold (i.e. it’s another ‘to sell’ to someone with a personal budget, it’s “typical privatisation of health and care). But I feel we should be looking into the social prescribing of facility to those who desire them, as an alternative to expensive drugs which can have limited efficacy.

Back to the future..

or back to planet Earth.

 

 

 

 

 

 

Further reading

Smith D. and Yaffe K. (2014) Letter: Dementia (Including Alzheimer’s Disease) can be Prevented: Statement Supported by International Experts. Journal of Alzheimer’s Disease 38: 699–703 DOI 10.3233/JAD-132372

 

 

 

 

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