Tag Archives: engagement

An emphasis on outcomes not process is now much needed for dementia

Today was a pretty disastrous day for me as a member of the army of million unpaid family carers. Yes, I merely ultimately burnt dinner for us which I had slaved for for hours.

But I am enormously grateful to be in a loving relationship where it can be hard work – and I will definitely  still miss it.

I am trained as an academic physician in dementia, with both a research and professional, and personal, interest in the subject. Just ask anyone who has known me well for the last 25 years or so.

As an unpaid carer, but one of many, I don’t feel the aggrandisement of the words ’empowerment’ and ‘engagement’ are what I particularly want, though I think these interrelated concepts, popular with professional grant applicants, are very important.

As not a member of the ‘conference class’, I do not in any way resent those with the power, influence or ‘deep pockets’ fronting yet again conferences where the greatest and good can exchange best practice with one another.

As an unpaid carer, I think what I really desire are “dignity”, “time” and “space”. Of course these are not words which trip off the tongue of professional wonks or conference organisers, as they suffer from the perceived lack of ‘measurable outcomes’.

The managerial adage ‘if you value it, measure it’ unfortunately comes with some operational baggage, ‘if you don’t value it, don’t measure it.” To say I was alarmed at the lack of ‘caring well’ in “The Well Pathway for Dementia”, despite the consultation events which undoubtedly were seen to happen, is a mild understatement.

I don’t care about myself, but I do think it’s a kick in the teeth to those who are, or who are concerned with, unpaid carers, paid carers with parlous employment rights, clinical nursing specialists providing high quality care (including in end of life and palliative care), respite care (day centres, for example), care at home, and so on.

At the start of this year, I was able to celebrate with close friends and colleagues the launch of my third book on dementia, published by Jessica Kingsley Publishers, entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

My first book “Living well with dementia: the importance of the person and the environment”, written around the NICE Quality Standard 30, was published in 2014, and won best health and social care book of the year award for the BMJ Book Awards in 2015.

My second book, “Living better with dementia: good practice and innovation for the future” published in 2015, the first of mine to be published by Jessica Kingsley Publishers, with main foreword by Kate Swaffer was the one where I confronted eating well, incontinence, GPS ‘tracking’, whole person care, delirium, ‘sporting memories’, antipsychotics and diversity, to name but a few.

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Thanks to all my close friends who came to support me on this important day for me. All the speakers and all the delegates attended entirely free of charge – it was an amazing afternoon, I thought.

This third (and not the last) book reviewed extremely well from a wide range of interested parties. In this book, I considered what I perceived to be what elements of the integrated care pathway might need to be present.

After the diagnosis of dementia, which also can come with a sense of relief that there finally exists an explanation for a whole series of ‘difficulties’, many people describe their journey through the NHS and social care as baffling, perplexing and stressful.

At my launch event, I was lucky to be joined about a number of great speakers, who don’t often tour the conference circuit despite being heavily involved with aspects of topics which interest me in dementia.

I’d like to thank Majidur Rahman, a friend of mine from when I did my MBA 2011-3. Majidur meticulously archived the event in the film below in his rôle at Aleph Productions. Whilst it comes in at about 200 minutes, I hope you agree it provides a wonderful, illustration of what can happen when people come together with individual concerns and hopes.

I’d also like to thank Kate Swaffer, who kindly gave up time to see us all and to lead the discussion at the end of the day. Kate is CEO of Dementia Alliance International, the partner group of Alzheimer’s Disease International. For me, too much of what is not good in commissioning dementia is the obsession with unsound metrics. For example, whether or not you change hearts or minds in newspaper articles by saying or not ‘dementia victims’ in large font as the headline might not be covered with the overall number of ‘Dementia Friends’.

And special thanks to Lisa Rodrigues CBE – personal friend, personal inspirational mentor, fierce advocate for health – who hosted the whole afternoon for me brilliantly.

I agree with the need for public education about dementia, articulated well in the only English dementia strategy ‘Living well with dementia’ (Department of Health, 2009). I do, however, think it inappropriate to equate a multi-million pound intensely professionally marketed product, where the scripting of sessions is not only inflexible but also intransigent, with a ‘social movement’.

Measuring the wrong outcome is of course, whisper it, a cardinal sin. The ‘impact’ of dementia rights is not how many placards you can hold up saying you ‘like rights’ (in no way reversing the closure of law centres which happened around the time of the David Cameron Dementia Challenge 2012). It would, however, be relevant whether the national government listens to professional concerns over the alleged offences in the United Nations Convention on Rights for People with Disabilities (UNCRPD). Or whether the Care Quality Commission cares seriously about abuses in degrading treatment, privacy or liberty as actionable abuses of human rights.

I would like to suggest something now deeply politically incorrect now. You do need ‘experts’ to help make the case that ‘supported decision making’ for dementia might be abuse of the UNCRPD. Such arguments could be and should be coming from DAI as they negotiate policy at the world stage viz United Nations or World Health Organization.

Likewise, the success of empowerment and engagement cannot be necessarily gauged by the number of local groups run, the number of policy groups ‘influenced’ or the number of harmonised facilitation sessions executed according to strict guidelines. This for me is a triumph of market-led process over outcomes leading to the potential of high quality care.

I hope that you can find time to listen to our video above. It wasn’t “commissioned”, or “budgeted for”, and does not have “outcomes” which need “evaluating”, but it does convey the notion that some things fall outside of the scope of a dementia industry.

I have no doubt about the ‘feel good factor’ for these annual conferences. And I think it’s terrific that the #Dementia2020 organisers went out of their way a number of free places available. But these are the same speakers with the same tired messages with the same glaring omissions – for me only, but everyone’s different.

Here’s to a happy time for me earlier this year.

 

Enjoy!

Go, figure.

 

@dr_shibley

 

 

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Changing the story will change minds

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The fundamental concern, not true, about many innovative initiatives in dementia care and support, such as engagement and ‘friendly communities’, is the unintended consequence that they act as a sticking plaster, but very little else. Proponents of sticking plasters will be the first to point out that they’re better than nothing.

But is it actually true that they’re better than nothing?

Take for example the scenario of someone being invited along to give a talk in response to a new Government/charity document, and that person has been given a diagnosis of dementia. Imagine, if after four years of intense ‘awareness’ raising and innovative initiatives into ‘friendliness’, including from some of the biggest names in the business, that person was accidentally left off the scheduled programme.

A concern has been for me is that engagement and involvement serves more of a marketing function, as a printing press for grant raising, rather than genuine involvement. That is, rubber stamp tick box ways of working. You can quite simply have a pathological culture and have the semblance of quasi-involvement.

Look past how that document from Government/charity might have been produced. At first, I have been encouraged to think of this as ‘who’s in the room..’ after Alison Cameron educated me on the ‘no more throwaway’ work of Prof Edgar Cahn, and the co-production workstreams from Nef and Nesta. Alison is totally correct. And it’s essential to add ‘…and who’s also listening to those people in the room.’

I am worried that this document would have been produced by the usual ‘big names’ in the third sector; few from people working in this area with a daily understanding of good professional practice and evidence; and not more than one or two living with dementia or carers. And you see this pattern repeated time and time again, say in the formation of “clinical excellence” guidelines.

And it at once becomes perfectly understandable how a person living beyond a diagnosis of dementia, to use Kate Swaffer’s succinct term, could have got left off the timetable. Shocking but not surprising. Whatever the explanation, the emotional effect has been made, but it is time for all of us to move on – until the next time that is.

Time and time again people with dementia or carers, if at all, are given a small slot, more often than not at the end of the day’s programme, exist as an afterthought for event organisers, with other speakers not aware of the defect. Exceptions though exist; a friend of mine living with dementia was given a slot in the morning in an excellent research conference, and was specifically told to take his time even if the government minister overran.

A lot of faith is put into the rules of the game. But sometimes the rules of the game need changing. There needs to be a fundamental change of culture. People with dementia have been advocating for their rights, but this is as useful as the issue of who is listening. A third friend of mine is about to set out the case for human rights and disability for people with dementia in Geneva; but will the relevant non-governmental organisations listen and act?

Like a dog sitting on the word ‘no’ in the phrase ‘no dogs allowed’, we have to concede Apartheid is no longer the law in South Africa. It is not acceptable to have a sign in a B&B saying ‘No Irish, no blacks, no dogs’. There is normally a lag between a moral outrage, and a change in behaviour. I hope that this will happen too in a change in narrative away from the prejudices of society about dementia.

 

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Language and dementia. Why are we making such poor progress?

Andy Tysoe tweeted this only this morning.

The sheer number of the ‘breakthroughs’ in dementia treatments has been breathtaking in the last few years, particularly since 2012. This of course is a highly manipulative agenda. The aim of this propaganda is to convince you that progress is being made in dementia research, and that you should continue to fund it. The truth is – the vast majority of the breakthroughs are useless.

Nevertheless, we are where we are. Social care funding has not been ringfenced in England since 2010. You are not going to get any stories about this on a frequent basis. English dementia policy needs an infrastructure for coherent integrated person-centred care, with a trained workforce, and care pathways. One large charity pumping out ‘Friends’ is not enough. The same charity has decided to campaign on #FixDementiaCare with cheap tacky photoshoots from MPs, having been ineffective on the issue in the last few years. One should legitimately be asking for stronger clinical leadership this being the case. The English dementia strategy expired five years after 2009 – it is now 2016.

Language sets the political agenda everywhere.

Even words such as ‘engagement’ and ‘involvement’ compound the impression of ‘does he take sugar?’ All too often people with dementia have been speaking in public on the subject of being engaged in events on dementia, rather than real issues in dementia policy – such as the need for funding in social care. Organisers of events invite people with dementia at the last minute, with this act of tokenism being highly insulting in effect. Working groups if the participation at worst is illusory might add a further layer of marketing, and often appear like a nice little earner, potentially, for the bureaucrats organising them. But the real effect is far more damaging – this friendliness has been profoundly disempowering, and highly obstructive. Often the purported ‘co-production’ and the ‘patient voice’ are not genuine at all – the relationship defined by Nesta in 2009 is defined by three simple words “equal and reciprocal”, often forgotten, and becomes a trite trivial piece of marketing, sadly, instead.

Compare this to a whole book on the subject written by Kate Swaffer, “What the hell has happened to my brain?”.

I have been dumbfounded and truly enormously saddened by those who claim to be gurus in engagement and involvement being so silent on Kate’s book. But this for me speaks volumes.

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Kate, not only living with dementia, is about to embark on a Ph.D. Whilst medics go all Captain Cavemen mode about the number of diagnoses (of whatever quality) they’re making, Kate is demonstrating what should be happening. That people living with dementia should be given every single resource to help them live ‘beyond the diagnosis’ as Kate calls it, I feel strongly, is an essential imperative in both domestic and international policy in dementia. This change to a rights-based approach, viewing dementia as a disability, has totally changed the mood music.

Here’s the original paper we did with others on language and dementia some time ago; it was in fact my second ever poster at an international conference on dementia (though I have done considerably more now.)

[pdf-embedder url=”http://dementia-wellbeing.org/wp-content/uploads/2016/02/An-analysis-of-75-English-language-online-articles-on-the-G8-dem.pdf”]

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Don't mourn, but organise!

It’s claimed that the British trade union movement, in response to yet another battering of the left-of-centre political parties at the general election in 2015, produced the clarion call, ‘Don’t mourn, but organise!’ The saying, originally associated with the last words of a singer and activist called Joe Hill it is reported, has become synonymous with a severe defeat.

The diagnosis of dementia, imparted to a person and his or her friends and family, can be perceived as a severe defeat. With a relative lack of pure biomedical offerings for symptomatic treatment or cure, currently, or indeed drugs to halt progression of the disease, persons on receiving a diagnosis can be expected to commence an endure a prolonged period of a type of ‘mourning’. The expectation of packing up your day job or dissolution of friends of family can be overwhelming, if an alternative of reablement through the social model of disability is not even ‘on offer’. It is estimated that there are currently about 47 million people in the world living with dementia.

I often give ‘Dementia Friends‘ sessions to the general public. Such information sessions can lead you to bring into sharp focus your own thinking indeed. I was asked about the ‘diagnosis gap’ recently by a salaried GP from West London: this is the gap between potential diagnoses of dementia in the community, and the actual number of diagnoses given. This shortfall has had a number of reasons associated with it across the years, and English policy has tried to reduce this gap.

Chris Roberts was told his diagnosis of mixed dementia, Alzheimer’s disease and vascular dementia, a few years ago. His dementia is what is called a ‘young onset dementia’, as it presented before the age of 65. However, Chris had a history of emphysema, a disease of the lung which can produce shortness of breath and marked decrease in oxygen saturations. Such low oxygen (hypoxia) can indeed cause memory problems. Chris underwent a series of systematic tests before finally arriving at a diagnosis. That is why you always hear Chris about preparing to wait for a proper and correct diagnosis in a ‘worth the wait’ manner.

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Chris is passionate about educating others about dementia. He is in fact the Alzheimer’s Society regional ambassador for Wales, a contact for the Alzheimer’s Research UK, a ‘champion’ for Join Dementia Research, a delegate for Dementia Action Alliance, passionate about supporting Young Dementia UK, a Dementia Friends champion, amongst his main commitments. Such experience has been very recently recognised in his deserved appointment to the committee appointed by NICE (the National Institute for Clinical Excellence).

The basis for the doctor-patient relationship is based on trust and confidence. And yet the statistics surrounding how a diagnosis sometimes not being imparted are staggering. The whole ‘mix’ of reasons is complicated, including a reluctance by some not wanting to be given the diagnosis of dementia, but 37% of people with dementia in the UK do not receive a formal diagnosis, and the length of time you have to wait to receive a diagnosis varies hugely depending on where you live, from two weeks to over six months. For some time now, the Alzheimer’s Society has been doing its ‘Right to Know’ campaign.

In English policy, there have been correct concerns that accompanying the drive for diagnosis should be an equal sustained improvement in post-diagnostic care and support for a person with dementia. This might include a care coordinator, information sharing between care services, multi-disciplinary input as or when required (e.g. from a physiotherapist, speech or language therapist, occupational therapist, clinical psychologist, specialist nurse), enhanced healthcare across a diverse range of care settings (including at home, residential care homes, hospitals and hospices), better advanced care records and planning, better end of life care, and so on. Clinical nursing specialists have in particular a pivotal role in helping with coping strategies for carers, who very often find themselves under strain whilst doing valuable and rewarding work. And an optimal system must include dementia advisors and dementia support workers too.

Chris himself spoke briefly about this topic last year at the Alzheimer’s BRACE conference in Bristol.

Chris produced a brief ‘wish list’, which started with ‘joined up services’.

Here in a recent Care England/ITN debate, Beth Britton, well known campaigner and advocate in dementia care, says, “In my own experience, for my dad, integration simply did not exist.”

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The cuts in social care funding over the last few years have been devastating. Such cuts have had an impact on the delivery of NHS care, for example in delayed discharges from hospital, but it is clear that the social care profession need proper resources and time to care in itself.

The Alzheimer’s Society is currently looking at standards in post diagnostic care and support for dementia, and this will be an extremely welcome contribution to the narrative here in England. A substantial contribution has been made previously by the Care Quality Commission in their ‘Cracks in the pathway’ document, which, while celebrating outstanding care, did concede simultaneously that bad care did exist and could not be accepted. Often care faltered at discontinuities in the care system, notably.

Life experiences matter enormously, as through building up a picture of how people have lived beyond their diagnoses of dementia in the community is critical for us all to understand dementia. Wendy Mitchell never fails to amaze me in the sheer commitment she puts into her campaigning, which includes describing her experience of early onset Alzheimer’s disease, including through her blog ‘Which me am I today?‘. Alzheimer’s disease is the most common type of dementia worldwide, typically presenting with significant problems in learning, memory, navigation and/or attention. Wendy is passionate about promoting dementia research particularly. Wendy will indeed be discussing with Gavin Terry in policy from the Alzheimer’s Society the need for an effective post-diagnostic network next week in ‘NHS Expo’.

In the UK, there are some remarkable individuals who stand out also as leaders, living with dementia. I can think of immediately Hilary Doxford, who happens to be the delegate living with dementia for the World Dementia Council. Also, Ken Howard is an Alzheimer’s Society ambassador, and Dr Jennifer Bute (and who recently featured in BBC Radio 4’s “A doctor’s dementia“. I am also mindful of Agnes Houston MBE, living with dementia from Coatbridge, Scotland. Valerie Blumenthal also has been outstanding in sharing her experiences of what it’s like to live with a relatively rare type of dementia; and has just finished what I am sure is another excellent book. And these are just a few names from the UK; there are many more in Europe, and indeed next week’s Alzheimer Europe conference in Ljubljana, Slovenia, will allow time for many social and professional gatherings.

There is no doubt that huge strides have been made in ‘engagement’ and ’empowerment’ of people with dementia. I do not wish to underestimate this. But I do find the word ‘engagement’ as a term a bit limp; for example, I do not as such ‘engage’ as postman when I receive my post from and chat with him daily. You can’t “half believe” in equality or inclusivity, I feel. It has to be more than perceiving people living with dementia as ‘living with an illness’ in the strict medical model, and getting away from the ‘does he take sugar?’ mentality which can inadvertently rear its ugly head. I feel the next obvious advancement is to advance empowerment to a further level, and to have those people who want to, living with dementia, also leading on policy. Chris’ appointment to NICE and Hilary’s appointment to the World Dementia Council, while conceding that a few representatives for the millions with dementia are inadequate, have been the necessary first step in this process, I feel.

There are ways of not mourning but organising, through for example the European Persons with Dementia (chaired by Helga Rohra), or internationally through the Dementia Alliance International (chaired by Kate Swaffer). Therefore, if one truly believes in genuine equality, we should be jumping at the chance of equipping those people with dementia who want to with the leadership skills to promote authentic advocacy. This will meet with some resistance from others, I am sure, but this is essential if we are to go beyond ‘friendliness’ and cut into the icebergs that are stigma and discrimination.

 

 

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A digital strategy for the 'Dementia Challenge' and the 'Dementia Challengers' website

There is a debate – yet to reach proper fruition – on the extent to which individuals can ‘maintain and manage their own health’, and that healthy living is not always an individualised, purely rational process of information-seeking and correct choices that result in improved health and independence (Henwood, Harris and Spoel, 2011).

Living well with dementia nonetheless appears to involve supporting individuals in making decisions appropriate for them, and these are decisions which directly affect their care and support. However, as a result of the dementia itself, a person’s mental capacity can change, and the nature of this decision-making process will change, with carers involved in reviewing the needs and preferences of individuals with dementia as their circumstances change. Whilst the focus of this book is not legal, and certainly an intention of this book is not to give any medical or legal advice, this chapter introduces the very important issue of independent advocacy services, as access-to-justice is an important feature of all civilised societies.

A key to making informed decisions is having full, accurate information.

However, the information can be incredibly overwhelming. Lee  (@dragonmisery) decided to organise this information for carers in an organised way. Her impressive website, “Dementia challengers: Signposting carers to online resources” (http://www.dementiachallengers.com), is a great place for information about dementia, and this website contains information specifically for carers.  Clearly, accurate and complete information such as on this website is essential for individuals with dementia and their immediates to be able to exercise control and choice properly in negotiating access to resources.

Dementia Challengers

A previous policy document, “Putting People First: A shared vision and commitment to the transformation of Adult Social Care”, amongst others, had made a close link between person-centred care and ‘choice and control’.

Ensuring older people, people with chronic conditions, disabled people and people with mental health problems have the best possible quality of life and the equality of independent living is fundamental to a socially just society. For many, social care is the support which helps to make this a reality and may either be the only non-family intervention or one element of a wider support package. The time has now come to build on best practice and replace paternalistic, reactive care of variable quality with a mainstream system focussed on prevention, early intervention, enablement, and high quality personally tailored services. In the future, we want people to have maximum choice, control and power over the support services they receive.

Lee is specifically mentioned by Anna Hepburn (@AnnaHepburnDH), Digital Communications Manager for Social Care, in an article entitled ‘Digital engagement on dementia’ on the Department of Health website.

As one of the #dementiachallengers, Lee (@dragonmisery) has set up the Dementia Challengers site to signpost online resources for people caring for someone with dementia. Nothing demonstrates better how the Dementia Challenge is more than a government initiative – and how it has its own digital life – than people who care about dementia creating their own digital community and helping others.

Anna Hepburn in her online article from 16th April 2013 then explains how this is consistent with the wider ‘digital strategy’ from the Department of Health (and other Government departments):

Digital isn’t just about publishing anymore. The Department of Health (DH) digital team certainly knows that, but there are plenty of people within the department – and across government – still to be convinced of the wider benefits of digital, or uneasy about new ways of working.

Tapping into this community provides a great opportunity for policy colleagues to engage with people with day-to-day experience of living, caring or working with dementia. I’ve learnt a great deal from them myself and now I want to find ways of extending those benefits to the dementia policy team. So this is the next step, to fulfil some of the central aims of the DH digital strategy – embedding digital processes in the way we work, giving policy colleagues the tools and confidence to engage digitally, and helping them identify the most appropriate digital tools and techniques for each stage of the policy cycle. And I’ll continue to try out new digital ways of opening up our work, such as the live blog from the Dementia Village, which helped extend the reach of the event.

Stephen Hale (@hmshale) is the ‘Head of Digital’ for UK Department of Health. The emphasis on open policymaking by the Department of Health is a welcome aspect of its digital strategy (Strategy). It is through this Strategy that the Department of Health have committed to using digital tools and techniques to improve upon an open policymaking process. The five stages are:

Stage 1: Shaping the policy product

Stage 2: Engaging stakeholders

Stage 3: Building robust analysis and evaluation

Stage 4: Finding practical solutions and enabling delivery

In the business sector, Gomes-Casseres (1996), in a very famous work called, “The Alliance Revolution: the new shape of business rivalry” has advanced the thesis of constructing networks actively to seek out and incorporate external knowledge into the innovative processes of businesses. Social networks play an important role in the sourcing and sharing of information, ideas, and knowledge, particularly where they span functional, divisional, and organisational boundaries. However, social networks are dynamic, personal, and unrecorded, and, as a result, they are difficult to manage and direct. Organisational networks also play an important role in the innovation process; they are flexible, enabling network members to reposition themselves more speedily in response to changes in technology and market. They also bring together distributed resources, knowledge, and competences.

The open innovation paradigm for firms, pioneered by Henry Chesbrough (2003), can be interpreted going beyond just using external sources of innovation such as customers, rival companies, and academic institutions, and can be as much a change in the use, management, and employment of intellectual property as it is in the technical and research driven generation of intellectual property. There are clear lessons to be learnt in the development of policy about dementia in a way that includes opinions of all stakeholders, not just the usual ones.

Useful readings

Chesbrough, H.W. (2003) Open Innovation: The new imperative for creating and profiting from technology, Boston: Harvard Business School Press.

Department of Health (2012) Department of Health Digital Strategy [20th December], available at: http://hale.dh.gov.uk/2012/12/20/the-dh-digital-strategy/.

Gomes-Casseres, B. (1996) The Alliance Revolution, The New Shape of Business Rivalry, Cambridge, MA: Harvard University Press.

Henwood, F, Harris, R, and Spoel, P. (2011) Informing health? Negotiating the logics of choice and care in everyday practices of healthy living, Social Health & Medicine, 72, 2026-2032.

Hepburn, A. (2013) Digital engagement on dementia. [16th April], available at: http://digitalhealth.dh.gov.uk/digital-engagement-on-dementia/

UK Government/LGA/ADASS/NHS (2007) Putting People First: A shared vision and commitment to the transformation of Adult Social Care, London: Her Majesty’s Stationery Office, available at: http://www.cpa.org.uk/cpa/putting_people_first.pdf.

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