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No pledge is too small. Please sign up for my @DementiaFriends session on Aug 14 in Central London.

The aim of ‘Dementia Friends’ is to sign up people who wish to learn about dementia.

There are probably close to one million people living with dementia in the UK. There are probably also somewhere in the region of a hundred different causes of ‘dementia’.

These diseases of the brain cause problems in thinking – not necessarily memory, could be language, planning, complex visual perception, attention, decision making, distorted ideas.

Sadly, there’s a lot of misinformation about dementia.

This initiative from the Alzheimer’s Society, supported by Public Health England, is a remarkable initiative from the current Government to educate the general public on dementia. With greater education, it is hoped, barriers in society which lead to stigma and discrimination might be broken down.

Stigma is particularly significant, as stigma can lead to social isolation.

I will be giving an information session at BPP Law School on 14 August 2014, at 3.45 pm. On the day, you’ll need to ask the main Reception which room we’re in.

Whilst I am an academic in dementia, the session will be very basic. The aim is to explain in a completely unthreatening way some basic facts about dementia.

Because of the security of the law school in Central London, you’ll need to sign up in advance.

You’ll have to register on the @DementiaFriends website [here], but once you’ve done so you can register for the event here.

The people who attend are normally well informed, friendly and enthusiastic. You’ll be invited to have a badge should you wish to become a ‘Dementia Friend’.

More importantly, you’ll be asked to think of a commitment and action, and no pledge is too small.

It might be for example to ask your local paper to avoid using the term ‘dementia sufferers’, as this term might exacerbate stigma.

An example is here.

Paignton

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The introduction to my chapter on leadership in my follow up book on wellbeing in dementia

“All Russia is our orchard. The earth is so wide, so beautiful, so full of wonderful places. [Pause]. Just think, Anya. Your grandfather, your great-grandfather and all your ancestors owned serfs, they owned human souls. Don’t you see that from every cherry-tree in the orchard, from every leaf and every trunk, men and women are gazing at you? if we’re to start living in the present isn’t it abundantly clear that we’ve first got to redeem our past and make a clean break with it? And we can only redeem it by suffering and getting down to real work for a change.”

Anton Chekhov, “The Cherry Orchard”

 

 

The #G7dementia leaders imposed some degree of finality by promising a dementia treatment or cure by 2025. But they are not real leaders in this context as there is no guarantee that they will physically there, in which case it will be impossible to attribute blame or success to them. And those did appear rather oblivious to much of the world around them. ‘Living well with dementia’ is exactly the sort of arena which will not benefit from a hierarchy of power, mandating people how to live well; a request not to think of elephants will quite often elicit the opposite result. For a start, most people do not wish to be micromanaged. It is clear nonetheless that members of the public will wish any correct diagnosis of dementia not to be unduly delayed, and to be given appropriate guidance about their condition. Such advice might vary from how to cope with depth perception difficulties, to how to deal with being unfairly dismissed in an employment context. These are valid considerations, and in a way analogous to ironing out inefficiencies; but that is where the comparison with a business ends. It is impossible to measure success in a dementia policy in terms of productivity.

 

Leaders in healthcare, including the dementias, will increasingly have to discuss matters with leaders in other disciplines. Whilst the followers might be diverse, it is clear that leaders will have diverse aims. Such aims might include promoting world-class research in publications and conferences, or might include world-class innovations for knowledge management in the service. Or leadership might involve, as a clinical leader on the ward, explaining to colleagues why there might more to a plan than medication. It is likely that more momentum for living well with dementia will come from people living with dementia, and caregivers, rather than Pharma or even large charities which focus on cure, care and prevention. Much of it does involve breaking down silos, but the converse of this is to build strong networks with a shared mission. The idea that a person with dementia can be at ease with himself or herself and his environment is a very powerful one, and not easily achieved by consideration of manipulations of single receptors in the central nervous system. The case for improving the quality of life of people should be coherently communicated, and not get sidetracked by what costs more; it turns out that technology is more of a burden on the NHS budget than the ageing population in any case. The trick is of course not to throw the baby out with the bathwater in any change of approach, and, as a leader, to keep composed even if the world dynamics in dementia policy appear very turbulent.

 

 

A com

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A prism of view of 'dementia' which is binary does not do anyone any favours

People like to make mental shortcuts.

Known as ‘heuristics’, they are convenient tools to save time and energy. For example, when you’re buying a new tablet, you might be really biased towards one which can show photographs in very high resolution.

The word “dementia” itself is a shortcut for people to summarise the fundamental way in which a particular type might share particular characteristics.

This is like an ‘asthmatic’ who gets very short of breath around certain types of tree pollen.

The word “dementia” would not be a problem, if it were not a label, and implied certain negative connotations, made by popular through the media. We all know what these connotations might be: like “time bomb”, “horrific”, “horrible”, “robbing you of your mind”.

But even if you don’t conflate such emotive terms, it’s all too easy to implant as “them” against “us” view. “What’s it like to live with dementia?” However well meant, it sounds patronising.

Well you tell me – “What’s it like to live in Luton?”  Living well in Luton might depend on whereabouts in Luton you are, what type of residence in, what your expectation of living in Luton was like. You get the gist.

Increasing the diagnosis rates of dementia implies you confidently can diagnose dementia. But this is not certain – to make a diagnosis of dementia reliably you might have to follow somebody with time to see if there is any decline. As such it might be convenient to “blame” the doctor, such as a GP for “missing it”, but people’s presentation of conditions change all the time.

It not only places faith in our medics, but it places faith in our diagnostic criteria.

For dementia, this faith is misplaced.

Firstly, this endless mixing up of dementia with memory problems. You can be profoundly depressed, with no dementia, with substantial memory problems.

Do you wish an army of ageing people with memory problems to get worried they have missed out on a diagnosis of dementia, given that Jeremy Hunt reminds us nationally we are missing our targets?

It is Hunt who is both missing the target and missing the point.

Quite a lot of dementia is difficult to diagnosis. Somebody may have a specific but identifiable language problem for years, with no problems in memory. This might be a dementia called primary progressive non fluent aphasia, for example.

Somebody with logopenic aphasia dementia might have OK memory but have real problems with memory.

And what if you transplant on your definition of dementia that it has to cause a meaningful impairment (presumably to exclude people with minor cognitive problems).

People who demand a functional impairment for a dementia and encourage people to live well with dementia, such as through memory aids, perception aids, planning aids, and so on, are in a sense having their cake and eating it.

Say you can get in and out of a bath without any problem? Is this something you should wish to emphasise to a disability tribunal whose award might ultimately affect your award for mobility around London using the bus?

Whether we’ve moved on or not will be guided by how frequently I hear the words, “What it’s like to live with dementia?’, as if a person living with dementia is an oddity.

People with younger onset dementia tend to find it hard to grips with the stigma of the world around them knowing they have a dementia at an early age.

But they also tend to be worried that an employer might sack him or her, rather than making reasonable adjustments for this cognitive form of disability. This is in fact what you would DEMAND in employment and equality law.

Dementia friendly communities lets scrupulous employers off the hook too easily, and if anything gives them an opportunity to distinguish themselves in the market for being ‘dementia friendly’. Never mind that that employer would have no qualms in sacking you in your 50s if you developed dementia, saying it was some necessary reconfiguration mumbo jumbo?

Talk is cheap. Embrace my reality.  It is not a nice one, but gives a clue as to where we need to go from here.

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The Dementia Alliance International is not a convenient marketing tool for dementia salesmen

The following is the draft of an extract from my chapter “Stigma, citizenship and living better with dementia” in “Living better with dementia: how champions can break down the barriers”, by Shibley Rahman with Forewords by Prof Alistair Burns, Kate Swaffer and Chris Roberts.

 

The really important question therefore is: how can people living with dementia lead? A really important steer for this came from the Joseph Rowntree Foundation in a report by Toby Williamson called “A stronger collective voice for people with dementia” (October 2012). The Dementia Engagement and Empowerment Project (DEEP) was a project which aimed to explore, support, promote and celebrate groups and projects led by or actively involving people with dementia across the UK that were influencing services and policies, affecting the lives of people with dementia. DEEP was a one year project which finished in Summer 2012. One of their key recommendations was that national and local organisations providing services or working with people with dementia need to develop and implement involvement plans, allocating resources to develop new groups, link groups together and help them share resources. Furthermore, it was recommended that researchers and research networks need to involve groups of people with dementia in helping to identify research topics, advise on research findings and undertake research on topics identified as important by people with dementia. Thankfully, this work has now been extended as part of the Joseph Rowntree Foundation’s work “Dementia Without Walls”, with various stakeholders also involved.

Ruth Bartlett erself found that keeping a diary has the potential to be used much more widely in patients living with dementia. In her opinion, the main advantage of this method is that unlike interviews, the diarist, rather than the researcher, is ultimately in control of how and when data are collected (e.g. Bartlett, 2011). Bartlett argues that diaries encourage participants to record thoughts and feelings as and when they occur and wherever they feel most comfortable; it therefore has the potential to compensate for short-term memory problems associated with dementia, plus it could help to minimise ‘respondent burden’ traditionally associated with interview based studies involving people with dementia (Cottrell and Schulz, 1993, p. 209). Bartlett has further suggested that people living well with dementia are willing, able to campaign, and presenting this at national and international conferences.

Dementia Alliance International (DAI) is the first global group, of, by and for people with dementia, where membership is comprised exclusively of people with dementia. Dementia Advocacy and Support Network International (DASNI) was the first organisation set up in 2001 by people with dementia; however their membership was not exclusive to people with dementia. There subsequently saw a sprinkling of groups at national levels, the Scottish Dementia Working Group (2002), the European Dementia Working Group (2012) and the Australian Dementia Working Committee (2013) were set up with membership of people with dementia, supported by their national Alzheimer’s organisations.

DAI was therefore established in January 2014 to promote education and awareness about dementia, in order to eradicate stigma and discrimination, and to improve the quality of the lives of people with dementia. DAI advocates for the voice and needs of people with dementia, and provides a global forum, aiming to unite all people with dementia around the world to stand up and speak out.

In the last few years, the voices of people with dementia around the world have become stronger, with leaders including Richard Taylor, Janet Pitts and Kate Swaffer. More recently a number of people with dementia have been discussing things globally, finally giving birth to DAI, to ensure issues such as social isolation, discrimination, stigma and exclusion are addressed. Their members wished to build a group consolidating the vast global networks of people with dementia now speaking and collaborating with each other over the Internet through blogs, Twitter, Pinterest, Facebook and other social media. The modern internet now offers incredible opportunities for organising social movements. too large or too difficult for a single person to undertake. In typical crowdsourcing applications, large numbers of people add to the global value of content, measurements, or solutions by individually making small contributions. Such a system can succeed if it attracts a large enough group of motivated participants,such as Wikipedia, Flickr and YouTube. These successful crowdsourcing systems have a broad enough appeal to attract a large community of contributors, giving true credibility to the idea that the whole is more than the sum of its constituent parts. And initial experience of people living well with dementia and the social media has led to interest in a related activity called ‘friendsourcing’. Friendsourcing attempts to synthesise social information in a social context: it is the “use of motivations and incentives over a user’s social network to collect information or produce a desired outcome, using as a guide what members of the network themselves consider to be important” (Bernstein et al., 2010).

But the notion that dementia is a cognitive or behavioural disability puts the debate into an altogether different stratosphere. Instead of aspirational ‘dementia friendly communities’, a title which itself is open to abuse by politicians, other leaders and charities, the narrative then becomes treating persons with dementia for whom policies cannot serve to their detriment. That is unlawful, under indirect discrimination in various legal jurisdictions. That is therefore an enforceable right. But why is there a feeling that things have not improved much despite various global initiatives.

Batsch and Mittleman (2012) in their ADI World Alzheimer Report, “Overcoming the stigma of dementia” remark that:

 “Government and non-government organisations in some countries have
been working tirelessly to pass laws aimed at eliminating discriminatory practices such as making people with dementia eligible for disability schemes. Regional organisations within countries have worked with local governments to improve access to services and delay entry to residential care, most of the time by trying to reduce stigma amongst family carers and health and social service professionals through increased education and regulations.”

Beard and colleagues (2009) offer practical suggestions for how a volte face in thinking could come about:

 “Study participants reported various ‘rough spots’ along the path of dementia and their strategies for circumventing them. There were personal, interactional, and environmental factors that caused them difficulties. Strategies included concrete activities, emotional responses, and environmental adaptations. Respondents used cognitive aids, made various modifications, garnered assistance from others, and practiced ‘acceptance’ to deal with persistent problems. Barriers resulted from the disease itself as well as personal obstacles and pressures from others. Participants clearly demonstrated that their lives were meaningful and could be further enriched through advocacy, a positive attitude, and physical, mental, and social engagement. These data show persons with dementia performing the emotional work of illness management, incorporating related contingencies into everyday life, and reframing their own biographies. As they creatively adapted and constructed meaning, order, and selves that were valued, respondents demonstrated agency by actively accommodating dementia into their lives rather than allowing it to be imposed upon them by structural forces.”

The highly intriguing aspect now is that even the narrative of ‘involvement’ is being reframed. This was indeed warned about by Beresford (2002) who suggested service user involvement has emerged out of two different rationales for participation – one consumerist, the other democratic. The former claims that greater efficiency, efficacy and effectiveness will result from appropriately-placed service user feedback mechanisms. The latter, democratic approach, often framed in a rights discourse, views user participation as a form of self advocacy. The history of mental health activism can be dated far further back, to 1620, when inmates at the Bedlam asylum petitioned for their rights (Weinstein, 2010). That the DAI finds itself having attracted the attention of large charities, Big Pharma and social enterprises promoting living well with dementia is not altogether surprising therefore, even despite its relatively young existence.

References 

Bartlett, R. (November 2011) Realities Toolkit #18: Using diaries in research with people with dementia.

Batsch, N. L., Mittelman, M. S. (2012) World Alzheimer’s report. Overcoming the stigma of dementia. Executive summary. London, UK: Alzheimer’s Disease International.

Beresford, P. (2002) ‘User Involvement in Research and Evaluation: Liberation or Regulation? Social Policy & Society, vol. 1(2), pp. 95-105.

Cottrell, V., Shulz, R. (1993) The perspective of the patient with Alzheimer’s disease: A neglected dimension of dementia research, The Gerontologist, 33 (2), 205-211.

Weinstein, J. (2010) Mental Health, Service User Involvement and Recovery, London: Jessica Kingsley.

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Don't sell dementia like a second rate used car salesman

I am often reminded of the piece of work which eventually won the Nobel Prize for Economics. It’s on the economics of ‘lemons’.

By this, I don’t mean the lemons you might see in Seville, or have a slice of for your gin and tonic. I’m talking about cars where the front looks normal, but the back is in fact soldered on. The car in question is in fact a rusty banger, and the car has been clocked.

“Living well with dementia” is an important policy strand. If done correctly, people realise that, while every person is unique with dementia, you become educated that there are medically various causes of dementia all with their own characteristics.

It’s sophisticated, as it needs an understanding of what ‘living well’, and why it might be of benefit for a person who has received a diagnosis of dementia. With the National Health Service operating a budget of millions of pounds, irrespective of whether you believe in a health market or not (and I do not), we need to know who the used car salesmen are.

“Living well with dementia” can be subject to the same sloganising as “No decision about me without me”. They seem to trip off the tongue, but commissioners need to be wary of any attempts at a quick fix. Mentoring for dementia has been around as an idea  for decades. Some of us like shiny new products.

But people living with dementia are not a commodity. They are unique individuals like us, who happen to have been given a diagnosis of dementia. There’s absolutely no love lost between me and the medical profession, so I take with a pinch of salt those people who are ‘inspirational’ in healthcare, when problems with the healthcare industries and local economies include toxic suppression of whistleblowing and lack of a realistic duty of candour.

Innovation, like equality and diversity, have become marketing gimmicks in the National Health Service. Leadership has become another vacuous buzzword, when there are juniors shoving in catheters and pushing trolleys like no tomorrow in the current NHS.

But it’s a matter of authenticity. I will unfollow or even block people who are ‘NHS influencers’ who will ask me to retweet a last tweet. I am not so cheap so as to go round ferreting up the arses of people who want to be ‘recognised’.

There is a genuine problem with stigma and discrimination of people who have received a diagnosis of dementia. Due to a leading ‘innovation’ in the NHS which uses a tool which has been designed as a screening test for inpatients’ depression, there’s scope for some of these things ‘being done cheaper and more efficiently’ to produce a whole swathe of false diagnoses.

So, by all means, help with dementia. But don’t become a used car salesman, please.

 

used-car-salesman

 

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My first 'Dementia Friends' session is tomorrow. Please sign up.

My first @DementiaFriends session is tomorrow.

“Dementia Friends” is a national initiative from the Alzheimer’s Society and Public Health England.

This session will be 45 minutes only, after which anyone who wishes to have one will receive a ‘Dementia Friends’ badge.

One problem though: you must sign up on the Dementia Friends website for you to be able to attend.

It’s being held at BPP Law School. With training contract applications deadline coming up (July 31st), you would have thought that this is a great way for commercial or corporate lawyers to be to show that they have an interest in the rest of society?

It’s open to anyone, from law student to senior law lecturer.

Why do it? There are 800 000 people living with dementia currently in the UK – it is a common set of conditions which affect thinking and behaviour due to diseases of the brain. It’s not a normal part of ageing, and it’s not just about losing your memory. I will try to explain that it’s possible to live well with dementia.

It’ll be at 3.45 pm tomorrow (Thursday 24th July 2014).

I will notify attendees of the room details very shortly.

The sign up sheet is here.

Please do come along!

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Inspirational people in dementia? I know them when I see them.

My interest in dementia started about 17 years when a graduate student in cognitive neurology at the University of Cambridge.

There’s one thing I can say about brilliant people. They never advertise themselves as brilliant.

Take for example when I showed Prof Trevor Robbins my findings from a group of patients with the behavioural variant of frontotemporal dementia on a test of ability to switch “cognitive set”.

What’s “cognitive set”?

Say I asked you to think of a colour. “Red”

And another? “Green”

And another? “Blue”

Now tell me the name of a shape.

“Turquoise”

I am unable to shift cognitive set. I am “stuck in set”.

Anyway, it was a bit more complicated than that. I was on the Downing Site in the head of department’s office at the University of Cambridge in 1998.

He said, “That’s amazing!” And then pulled off the top shelf a paper from a journal on psychopharmacology and showed me the virtually same graph from adults who’d been given a ‘low tryptophan drink’. This had depleted a chemical in their brain called serotonin, it’s thought.

That’s brilliant.

Or take another time when I was a hapless junior doctor on Prof Martin Rossor’s dementia and cognitive disorders firm at the National Hospital for Neurology and Neurosurgery.

I was asked to do the investigations for a man in his 30s who’d presented with a profound change in behaviour and personality over several years, who’d also had some vague memory problems.

I was advised to stick a needle in his back to get some fluid off his spinal cord in virtually a space suit for protection.

I organised the MRI brain scan. I showed it to Dr John Stevens at the National. He said, “You know what is, don’t you?”

“No”

“HIV dementia”

“What does he do out of interest?”

“He’s a lap dancer in Soho.”

That’s brilliant.

You see, I know brilliant people in the dementia arena when I see them, and almost virtually always they never shout about their abilities.

Take for example Kate Swaffer and her brilliant blogpost on dementia and human rights this morning.

Or Beth Britton’s consistent work on raising awareness of issues about caring.

Hunt tweet

And Ming Ho’s work too. And Darren Gormley’s. And Jo Moriarty’s.

I don’t need book reviews, award ceremonies or conferences to tell me how inspirational or brilliant people are.

I don’t wish to use Twitter for that either.

The phrase “I know it when I see it” was a colloquial expression by which a speaker attempts to categorise an observable fact or event, although the category is subjective or lacks clearly defined parameters.

The phrase was famously used in this sense by United States Supreme Court Justice Potter Stewart to describe his threshold test for obscenity in Jacobellis v Ohio (1964).

Dementia is not the same as an obscenity. But the same principles for this test apply, I humbly submit, m’lad.

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Why I feel 'parity of esteem' for dementia needs cross-party consolidation

The five giants of Sir William Beveridge are all to do with the externalities in which a person finds himself. I agree with Lord Layard that the ‘sixth giant’ is indeed mental health, and really chimes with my definition of wellbeing as how a person is content with himself or herself and his or her own environment.

‘Dementia’ is a curious chimaera I feel: the physical condition affecting the brain has effects in mental functioning. And it has certainly been achievement of this current Government at least to attempt greater awareness of dementia through the ‘Dementia Friends’ initiative.

But why are you more likely to get a referral for a physical health problem than a mental health one?

It comes down to “parity”, and this has been an enduring strand of policy through Alan Johnson MP (Labour), Norman Lamb MP (Liberal Democrats) and Jeremy Hunt (Conservative).

In a nutshell, the definition of “parity” is as follows.

parity

 

“Esteem” is essentially “worth”, or holding something as having the same value.

NICE recommended psychological treatment for depression and anxiety, and yet you’re much more likely to receive a prescription for antidepressants or antixoyltics than a referral to psychological therapies.

The “Improving Access to Psychological Therapie”s (IAPT) programme is a large-scale initiative that aims to greatly increase the availability of NICE recommended psychological treatment for depression and anxiety disorders within the National Health Service in England.

But the two are not disconconnected. It appears that, among people with a given physical illness, those who also have a mental illness cost the NHS significantly  a year more – they go more often to A&E, and have more hospital appointments.

It is is well known, many NHS commissioners, when short of money, cut mental healthcare. Sue Bailey, the retiring president of the Royal College of Psychiatrists, called the situation a “car crash”, alluding to the fact that cuts in psychological therapy cause far more problems than they solve.

But the commissioning for such mental health services is a mess with a confused approach from CCGs, NHS England  and local authorities.

NHS England have recently identified the importance of this issue in their document, “A call to action: achieving parity of esteem; transformative ideas for commissioners.”

The mental health of people with serious physical health problems is often overlooked. And likewise the physical health comorbidities of people living with dementia can be overlooked.

But who is going to lobby for this? There are practical difficulties if certain charities give the perception of being ‘too close’ to Government.

Developing a whole person care approach to health and social care and achieving parity between mental health and physical illness requires a fundamental change in the way services are commissioned.

I believe that people leading change will experience enormous resistance, not helped by the recent shrinking of actual funds for post-diagnostic support for people living with dementia, friends, family and carers.

Through a number of commissioning possibilities, though, it is possible to make sure all features of health and social care feature in a contract for living well with dementia. It’s possible to measure how successfully (or a not) a person living well with dementia is.

Fig 1

Such services will need to be designed by  experts with experience including persons living with dementia and their communities, whatever their source of experience. This should be based on the best possible evidence base, and I have long felt that there should be ‘parity of esteem’ in research for wellbeing as there is for drugs which block or slow down the disease process of the dementias.

However, as services are re-tendered, or new ones considered, commissioners should consider how to put individuals at the centre of commissioning decisions, and to design integrated mental and physical health services. This may involve designing an ideal pathway from first principles. Focusing on outcomes can also help: by focusing on a set of integrated mental and physical health outcomes, commissioners can incentivise the development of integrated provision of the outcome of wellbeing.

I inherently feel that, whichever party comes into government on May 8th 2015, there is a golden opportunity there to put parity of esteem at the top of dementia diagnosis and support. It is a success that the notion appears in the Health and Social Care Act (2012), but, if this entire Act of parliament is repealed by a future Labour government, we need to ensure that this approach is consolidated in some other way on the statute books.

Despite ‘threats’ to the NHS budget, the potential cost savings are not insignificant, as well as the aim of optimising wellbeing which is extremely hard to argue against.

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Lots of small gains will see our shared vision for living better with dementia shine through

When I asked Charmaine Hardy (@charbhardy) if she would mind if I could dedicate my next book, ‘Living better with dementia’ to her, I was actually petrified.

Obviously, Charmaine had every right to say ‘no’. You see, I met Charmaine through Beth on Twitter, and I saw the three letters ‘PPA’ in Charmaine’s Twitter profile. Charmaine’s Twitter timeline is simply buzzing with activity. It’s hard not to fall in love with Charmaine’s focused devotion everywhere, nor with how much she adores her family. This passion, despite daily Charmaine working extremely hard, itself generates energy. People are attracted to Charmaine, as she never complains however tough times get. She thinks of ways to go forwards, not backwards, even when she had trouble with her roses recently. She basically creates a lot of good energy for all of us. As Charmaine’s Twitter profile clearly states, “I’m a carer to a husband with PPA dementia.”

Things are not right with the external world though. We have millions of family unpaid caregivers rushing around all the time, trying to do their best. Seeing these relationships in action, as indeed Rachel Niblock and Louise Langham must do at the Dementia Carers’ Call to Action (@DAACarers), must be a fascinating experience. There’s a real sense of shared purpose, often sadly against the “system”.

Contrary to popular opinion, perhaps, I have a strong respect for the hierarchy I find myself in. I have asked Prof Alistair Burns (@ABurns1907), a very senior academic in old age psychiatry, to write one of my Forewords. He also happens to be England’s lead for dementia, but I hope to produce my book as a work of balanced scholarship, which does not tread on any policy toes.

But underlying my book is a highly energised social network (@legalaware), based on my 14000 followers on Twitter. My timeline is curation of knowledge in action, in real time as my #tweep community actively share knowledge on a second-by-second basis. There’s a real change of us breaking down the barriers, and changing things for the better. Sure, some things of course don’t go to plan, but with innovation you’re allowed to crack a few eggs to make an omelette. I have enormous pleasure in that in this network people on the whole feel connected and with this power might produce a big change for the better.

My new book is indeed called ‘Living better with dementia: champions challenging the boundaries‘ – and I feel Kate Swaffer (@KateSwaffer) and Chris Roberts (@mason4233) are doing just that. They continually explain, reasonably and pleasantly, how the system could be much improved from their perspectives of living well with dementia, such that we could end up with a ‘level playing field’. And of course the fact we know what each is up to, for example pub quizzes or plane flights, means that we end up being incredibly proud even if we have the smallest of wins.

My proposed contents of this book are as follows: here.

I am not going to write a single-silo book on living better with dementia, however much the medics would like that.

For many of us in the network, dementia is not a ‘day job’. This shared vision is not about creating havoc. It’s simply that we wish the days of the giving the diagnosis of dementia as ‘It’s bad news. it’s dementia. See you in six months’, as outnumbered. That’s as far as the destruction goes. We want to work with people, many of whom I used to know quite well a decade ago, who felt it was ‘job done’ when you diagnosed successfully one of the dementias from seeing the army of test results. I would like the medics and other professionals not to kill themselves over our urge for change, and work with us who believe in what we’re doing too.

Whenever I chat with Kate and Chris, often with a GPS tracker myself in the form of Facebook chat, I am struck by their strong sense of equity, fairness and justice. And I get this from Charmaine too. The issue for us is not wholly and solely focused on how a particular drug might revolutionise someone’s life with dementia. The call for action is to acknowledge friends and families need full help too, and that people living with dementia wish to get the best out of what they can do (rather than what they cannot do) being content with themselves and their environment. We’re looking at different things, but I feel it’s the right time to explain clearly the compelling message we believe in now.

These values of course take us to an emotional place, but one which leads us to want to do something about it. For me, it’s a big project writing a massive book on the various contemporary policy strands, but one where I’ve had much encouragement from various close friends. For me, the National Health Service kept me alive in a six week coma, taught me how to walk and talk again, when I contracted meningitis in 2007. As I am physically disabled, and as my own Ph.D. was discovering an innovative way of diagnosing a type of frontotemporal dementia at Cambridge in the late 1990s, I have a strong sense of wishing to support people living with dementia; especially since, I suspect, many of my friends living well with dementia will have experienced stigma and discrimination at some time in their lives.

I understand why medics of all ranks will find it easier to deal with what they are used to – the prescription pad – in the context of dementia. But I do also know that many professionals, despite some politicians and some of the public press, are excellent at communicating with people, so will want to improve the quality of lives of people who’ve received a diagnosis. We need to listen and understand their needs, and build a new system – including the service and research – around them. I personally ‘wouldn’t start from here’, but this sadly can be said for much for my life. Every tweet on dementia is a small but important gain for me in the meantime. Each and every one of us have to think, ultimately, what we’ve tried to do successfully with our lives.

Suggested reading

Read anything you can by @HelenBevan, the Chief Transformation Officer for the NHS.

Her work will put this blogpost in the context of NHS ‘change’.

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"Leadership is the art of mobilizing others to want to struggle for shared aspirations."

“McLaughlin: Leadership has so many definitions that sometimes that term loses its meaning. How do you define it?

Kouzes: Leadership is the art of mobilizing others to want to struggle for shared aspirations. That part about struggling for shared aspirations may set our definition apart.”

I’ve also been though the motions of detailed study of leadership styles in my own MBA.

But this definition of James Kouzes really struck a chord with me.

This is of course not a particularly impressive ‘leadership style’, one sedentary guy with an iPad mini with a large product placement in shot?

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I have fleetingly thought too about who is the exact target audience of my book.

While ‘Living well with dementia’ is not a ‘self help book’, it is a fact that many people living well with dementia have warmly received the book.

In fact, in the front row in my line of vision to the left, two people sat, a son and his mother with dementia.

It turns out the son found my talk ‘inspiring’, and thanked me, in front of his mother, for saying which he perceived as powerful: that it’s more important to concentrate on what people can do in the present, rather than they cannot do.

And what did I conclude was the driving intention of an international policy plank about living well with dementia?

I concluded that a positive wellbeing is about a person being content with himself or herself, and his or her own environment.

This is not an issue of being drugged up with a ‘cure for dementia’. It is though saying something equally positive about dementia, if not more positive.

I do not consider the Alzheimer’s Show an “event with a buzz”. For me, it was like a wedding of a best friend. I was thrilled to meet Chris, Jayne, Suzy, Rachel, Louise, Natasha, Joyce, Nigel, Tracey, Tony, and Tommy, some for the first time.

And what you see is what you get with them.

Chris concluded, “Living better with dementia would’ve been a better title.”

And Tommy agreed.

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Chris and Tommy live well with dementia.

I agreed too. In a nutshell, ‘living well with dementia’ runs the danger of imposing your moral judgment or ‘standards’ on what living well with dementia is.

For me, living well in alcoholic recovery means not downing a bottle of neat gin when I get up, like I used to do in late 2006/early 2007 when I hit a rock bottom. (The actual rock bottom was when I had a cardiac arrest and epileptic seizure heralding a six week coma in the summer of 2007, rendering me physically disabled.)

But it’s a big thing for me that people who are living well with dementia are actually interested in – and supportive of – my book.

You see, I concede that I don’t live with a dementia yet to my knowledge – though many London cabbies conclude that I do [nicely], when I tell them the title of my book and they see me struggling get into their cab.

Chris pointed out something at first glance very true today – that I didn’t have many friends living with dementia as friends then, when I was writing my book.

Chris is in fact wrong. “Any” not “many”.

Tommy said something curious recently, that it’s ironic that it took an event such as the Alzheimer’s Show in Manchester to bring us all together.

But he’s right. We’re not there for any other reason than to share experiences.

Suzy commented that ‘I get it’. And I do think do, for all sorts of reasons, many of which were quite unintended.

I am currently writing ‘Living better with dementia: champions challenging the boundaries”. It’s going to be a toughie, but I think I can do it.

 

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If only Kate were there too…

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