The famous ‘Two cultures’ speech was delivered in 1959 at the Senatre House in Cambridge by CP Snow, controversially on the growing schism (growing since the Industrial Revolution, at least) between the arts and sciences.
Coincidentally, 37 years later, I did finals in the same location in neuroscience for my Bachelor of Arts degree, with a mind to do a PhD in young onset dementia at Cambridge (which I then did).
I was really struck by the “two cultures” yesterday. In an ideal world, we shouldn’t have to fight about it – but as some will tell you on one particular political side, money does not grow on trees, but curiously there always seems to be enough money for certain types of research.
I found the Horizon programme on a cure for dementia good in as far as it went. It wasn’t really on a cure for dementia, but mainly an advert for some grant programmes in biomedical research in Alzheimer’s disease.
Nick Fox, now a Professor at Queen Square and Director of the Dementia Research Centre there, but who was getting towards the end of his protracted time as Specialist Registrar to Prof Martin Rossor when I was a junior there, explained how voxel based morphometry (specialised brain scanning) could be used to confirm a case of posterior cortical atrophy, previously undiagnosed.
The pitch though was entirely to miss the point. It would have been much more helpful to know what the precise rehabilitative offering for the patient with posterior cortical atrophy was – the patient himself described his own vision as “a jumble” in his own words.
There was hurried talk of tau markers in the cerebrospinal fluid. But a lumbar puncture is an invasive procedure. And a cure which could stop the building up of toxic tau would have been useful to discuss, but Fox totally skirted around what the benefit of his hard won diagnosis was.
If you take the view that the precise name of the dementia is relevant, but the dementia is merely a pathological description of a buildup of tau in the brain somewhere, that helps you with your sledgehammer approach of taking an anti-tau drug forward. Then it means Fox should have entered into some sort of debate as to whether we are all ‘tauopathies’ now, ranging from Alzheimer’s disease, to frontotemporal dementia or posterior cortical atrophy.
Does this make the underlying genetic basis irrelevant? I think somewhat the arguments that posterior cortical atrophy is a variant of Alzheimer’s disease have always been rather anaemic, without reference to why there is such selective neuronal degeneration in the visual parts of the brain, and without reference to the underlying commonalities in genetics basis.
But the problem for Fox with his ‘dementia can be spotted now a decade before symptoms approach’ is the lack of answer to what proportion of people with slightly aberrant brain scans or markers, at what time, would be taken forward for a possible therapeutic treatment.
We saw elsewhere a different person, made patient, through apolipoprotein genotyping, who had become quite distressed about the lack of genetic counselling.
The actual situation for Fox is that there are hundreds or thousands of neurologists or general medics who do not even know what the clinical presentation of posterior cortical atrophy is, so it is no wonder that such patients both here and abroad get taken round the houses, invariably through an ophthalmologist or eye clinic, over years, prior to a diagnosis.
The programme was predictably full of ‘sufferers’ and ‘devastating’, shock doctrine stuff, rather than ANY acknowledgement of any people with dementia leading fulfilling lives. I don’t have any ideological problem with people crying on TV as it represents an authentic emotion.
The narrative however was fraudulently set up as an epidemic of dementia – despite the fact it is now widely conceded that the prevalence of dementia is falling – and here’s the sunny uplands of cure to solve everything. It was good to see cognitive neurorehabilitation get a mention though, even though it was essentially bordering on window dressing.
Quality of care research would be desirable too, as well as good quality of life research.
This was yesterday’s headline in the Times.
The problem was made more graphic with genuinely horrific stories from the Health Ombudsman’s report on poor quality of elderly hospital care, focusing on delayed discharges. But the data hailed from 2014/5, that’s a good two or three years after the Prime Minister’s Dementia Challenge, one year prior to the Prime Minister claiming he wanted the UK to be ‘the best country to have dementia in by 2020′ in a completely deluded manner, with social care funding on its knees.
The social model of disability correctly admonishes calling all people with dementia as ‘sufferers’ or ‘victims’, but rather holds them to be active participants in citizenship with fundamental human rights, such as a right to dignity. And yet another costly report has shown what we knew already – of people languishing stuck in hospital, who cannot be discharged. We knew all this prior to the last general election too. People have sadly suffered at the hands of the NHS and social care due to mismanagement.
Don’t get me wrong. Biomedical research is important. I followed the tweets from the British Geriatrics Society conference, and one of the tweets involved somebody with dementia who had entered into a coma due to a drug prescribed for delirium. This example shows why it does matter to diagnose some types of dementia (diffuse Lewy Body disease), and the need for clinicians to recognise delirium superimposed on dementia.
A cure for dementia before the onset of symptoms would be remarkable, especially for some rarer young people who face a near-certain likelihood of developing one of the strongly inherited dementias.
But we DO need to face facts, Dementia Awareness Week or otherwise, surely? If we’re ‘curing’ dementia really by focusing on a handful of manageable subtypes such as familial Alzheimer’s disease only, can we ‘solve’ inequitable delayed discharges too for an increasing number facing Jeremy Hunt’s NHS?
The timing of speakers for Feb 3rd 2016 is as follows 6-9:30pm
6pm arrival
6:30-45 Zoe
6:45-7:30 Jo and Jill
7:30-8 Julia
8-8:20 Break/food
8:20-50 Shibley
The flyer is here.
There will be pizzas on the night for anyone wondering about food and refreshments will be free – wine, snacks, tea and coffee. That should keep the energy high.
The line up (apart from me) is incredible. I do strongly urge you to come if you’re around and you’re interested in the topic of continuing to pursue research and evidence to better practice. I hope there to be much much engagement and participation for my talk, aimed at qualified social workers or social workers in training.
Please follow the organiser Zoe Betts (@iamsocialcare). Zoe’s motivation for doing this is described here in this excellent Community Care article.
First of all, I should not actually ‘love dementia research’ if only because I’ve been doing it discontinuously since my finals in neuroscience at Cambridge in 1995-6. Familiary breeds contempt, and all that.
I think meeting three people in the last year really turbo-boosted my interest in research into dementia. And I think if you compare the contents and style of my two books in dementia, published last year and this year, I feel the second book, as Steve Hilton might put it, is ‘more human’.
The three people are Wendy Mitchell, Chris Roberts and Hilary Doxford – of all these three, I know Chris by far the best, but I find the eagerness of all three to promote dementia research awesome.
Chris Roberts, living with a mixed vascular and Alzheimer’s dementia (not uncommon a combo), managed to do two interviews on the BBC last week, “Victoria Live” and “BBC World”, managing to get a plug in for ‘Join Dementia Research’.
‘Join Dementia Research’ (@beatdementia) is an initiative anyone can join in to take part in dementia research. It’s sort of like a different sort of dating agency – one where you paired up to the research project most suitable to you. You don’t have to be living with dementia to participate.
When I tweeted this picture earlier today, I did not actually realise Chris Roberts and Jayne Goodrick were standing on the far right (where they are not politically.) Hilary’s on the far left (not politically either, to my knowledge) and Wendy’s in the eye-catching red jacket (not a political statement either, I think.)
Chris here explains his own experience of dementia, and explains the need for research in his BBC World interview. Any person with dementia becomes an expert in his or her own condition in time and place.
But having thought about it a lot recently, in light of national policy, I’ve concluded that I like research into dementia a lot. I enjoy reading about it all the successes and failures. I like doing my work, even though it does not consume any expensive resources. I’ve so far got a chance to present my findings, which have not cost anything at all, at two international conferences: Alzheimer’s Europe and Alzheimer’s Disease International.
I think I would strongly recommend anyone living with dementia or closest to such a person to think about even doing research for himself or herself, and publishing the research. Once you get involved with the research bug, it’s a great way to meet people, and talk effortlessly with people who share your interests. I’m invariably impressed by medics who’ve had the time, opportunity or resources to pursue research of some sort, not least because they’re furthering the knowledge and reputation of the profession. It also tells me that “they’re not one trick ponies”.
I don’t think of a primary goal of a researcher should be gainful paid employment. The people I’ve found who excel at research are the ones who are genuinely passionate about it. It’s a great privilege I feel to be able to study a topic in detail, and to take on contemporary challenges. As a person, I feel philosophically that nothing goes to waste, so for me even ‘negative findings’ have value.
Whilst I do not share in the hyperbole surrounding the drug trials research presented last week in Washington at the Alzheimer’s Association conference, I think any development which overall increases our understanding, however small or incremental, is to be welcomed. The advantage of well designed trials, even if they do not throw up the ‘clean results’ many would like to see, not least for a ‘return on investment’, is that they provide something people in the future can rely on. Money we spend on research is literally investing in hope. A love of knowledge I suspect would get a widespread democratic mandate, as would a greater understanding of human experience. All of this helps the NHS in our jurisdiction to offer a better care and support environment, with colleagues in social care, in theory and hopefully in practice.
I don’t feel it’s a just but lost cause, like any good Jacobite would, although I’ve been in love with lost causes since I became a supporter of Tottenham Hotspur, or a book called ‘Jude the Obscure’ (St Jude was apparently the Patron Saint of Lost Causes).
Possibly even there’s no such thing as satisfaction. In “The Dawn”, the 19th century philosopher Friedrich Nietzsche claimed that that which is erroneously called ‘pity’ is not selfless but actually self-motivated. Am I motivated by negative emotions such as ‘pride and satisfaction’ in doing research into dementia? Am I ‘taking control of biology’? Possibly.
I published my paper in 1999 with Prof John Hodges and various others for a reason. This was because they were patients turning up in cognitive neurology clinic, query the behavioural variant of frontemporal dementia, whose tests appeared at first blush entirely normal. And yet these tended to be people in their 50s or 60s with quite profound changes in personality which had been noticed by their closest. I provided an explanation for why this paradox exists in this paper which is now cited in the current Oxford Textbook of Medicine. I argued it’s because the part of the brain which is affected, a part of the brain near the front of the head towards the eye, is hard to investigate.
The vast majority of my colleagues in research have confirmed this finding, which brings me onto my final point. It is incredibly rewarding when someone you’ve never met before claims to agree with you and have taken your results further. And it’s wonderful when somebody you’ve never met before knows your research and likes it – this happened to me when I met Prof Brendan Boeve from the Mayo at the Alzheimers Association conference last year in Copenhagen.
Politicians are democratically elected, but researchers are not.
It might be inferred, sometimes, that researchers get their ‘political mandate’ from politicians. Against this idea is that members of the general public are free to see research monies going into research which is particularly merit-worthy.
It struck me how little intellectual rigour has been applied into thinking about the research challenges of a ‘global dementia research strategy’. The usual narratives, such as sharing of ideas and data sharing, as well as the need for ‘intelligent regulation’, are usual brought to the table and I have no problem with that.
In a way, research is like a market. It could be argued that there is a supply and demand. One can argue that some parts are actively ‘competing’ against others, leading to fragmentation. This fragmentation at worst leads to an unnecessary reduplication, with wasting of resources.
Working together, or collaboration, allows a pooling of resources, not just in financial terms but also in human capital and talent. It can mean that the same research question is not dealt with by numerous labs in the world.
But like markets, it can mean that there is not universal coverage of the entire gamut of research questions. Research into dementia is not simply about research into Alzheimer’s disease. While there is a collective sense of excitement at possible ‘cures’, we should be entitled to stop to think this is for one type of dementia at one particular stage. Research, like markets, can be forced to concentrate on areas of high profitability; but this runs the risk out of outright failure.
I have noticed a real reluctance in the Alzheimer’s Association conference in 2014 to engage with research questions of real “mettle”. For example, people who present with later stages of dementia, or present with ‘mixed’ pictures of dementia, such as Alzheimer’s disease and vascular dementia.
Or even that people with dementia rarely present as pure medical models of dementia. People living with dementia in the majority present with multiple co-morbidities, which makes discussion of their potential future pharmacy more complex than many would admit.
At worst this type of research, focusing on ‘pure’ biological models such as amyloidopathies for Alzheimer’s disease, synucleinopathies for diffuse Lewy body disease, or tauopathies for frontotemporal dementias, encourages a very ‘silo’ mindset, attractive that might be for enhancing shareholder dividend from Big Pharma and subsequent research laboratory funding.
But excluding people actually living with dementia from the conversation is painful. Where were the views of the Dementia Alliance International in #AAIC2015? They’re the group of people living with dementia – and yes, there are about 47 million people currently living with dementia around the world, of which a few million are in the U.S.
Excluding them from identifying the questions needing to be answered runs the risk of a global research policy which is deliberately ageist, or discriminatory towards certain groups of people who live with dementia.
I agree there are many ‘barriers’ to effective research into dementia at a global level, but they’re not simply barriers to biological research.
“To date, qualitative researchers have already addressed a series of important issues including: (a) individuals’ perception of their illness; (b) exploration of carers’ experiences; (c) impact of dementia on friends and family (Prorok, Horgan, & Seitz, 2013); among others. However, several gaps in our knowledge remain (e.g. optimal psychosocial interventions for carers, achieving social integration, evaluation of training and education in dementia care) (Moniz-Cook et al., 2011). Careful prioritization of the gaps which warrant further qualitative research is needed (Prorok, Horgan, & Seitz, 2013).”
But other issues definitely exist: such as recognising the cultural and ethnic diversity of people who are entitled to be diagnosed by and given support from services around the world; or the method of obtaining consent.
We cannot, also, keep on viewing the global research strategy through the prism of well funded jurisdictions; much dementia ‘exists’ in lower and middle income countries, so we must make sure that the “outputs” from our current global dementia strategy, whatever the so-called “barriers”, are fit for purpose for them too.
But therein lies the problem. Some researchers are indirectly accountable to shareholders of big companies, who will wish to see a ‘return on investment’.
Without any doubt, in my mind, the discussion of barriers to research in dementia has become too easily conflated to barriers to return on investment in neurochemical research (e.g. all ‘trials’ with harmonised entry requirements, and not seeking out valid qualitative perceptions.) It would be a massive mistake, I feel, if we simply went down this financial route, as the discussion of the value of human capital is different from econometrics you might have heard elsewhere.
References
Moniz-Cook, E, Vernooij-Dassen, M, Woods, B, Orrell, M & Interdem Network (2011). Psychosocial interventions in dementia care research: The INTERDEM manifesto. Aging & Mental Health, 15, 283-290.
Prorok, J. C., Horgan, S., & Seitz, D. P. (2013). Health care experiences of people with dementia and their caregivers: A meta-ethnographic analysis of qualitative studies. Canadian Medical Association Journal, 185, e669-680. doi:10.1503/cmaj.121795
We’ve had circular discussions on ‘suffering’ before, to the point we probably agree to disagree, but have learnt to respect other people’s well meant perspectives. But I think it’s fair to say that the happiness and camaraderie which accompanied #ADI2015 is a very real one. I took this photo at a chocolate factory in Adelaide Hills. Nutrition and dementia, as it happens, was a key satellite theme of the #ADI2015.
Here’s a film by Arc Seven Communications of Beth Britton explaining the need to consider what people with dementia can do.
As it happened precisely on the day of our return, as I was travelling from Kuala Lumpur to Amsterdam, Australia aired a brilliant programme ‘Insight’ on living with dementia.
It had been a huge pleasure to have returned from spending time with Kate Swaffer, Peter Watt and Colin McDonnell who all featured in this remarkable programme. In place of fear, I felt a substantial integrity was provided by having so many delegates living with dementia attend this year’s Alzheimer’s Disease International (ADI, @AlzDisInt) conference. We met up in Perth, Western Australia, in the middle of April, for three wonderful days.
@legalaware@DementiaAllianc absolutely and it was epic to have 10% PWD in attendance! Hope that trend continues. — Dementia Advocate (@jball49) May 1, 2015
My talk was on whether dementia care would easily lend itself to private markets. I received a lot of useful feedback from delegates. I basically pointed out the problems of trying to put dementia care under the philosophy of insurance contracts because of the potential asymmetry in information between insurer and person/patient. This information asymmetry, I argued, could come from, say, a complete genetic screen, if NHS England get their way in moving towards personalised medicine/Big Pharma. The problems arise if someone with a high genetic risk for dementia seeks insurance knowing he or she is at high or low risk; or whether a person obtains an insurance policy and then behaves in a high risk behaviour. I argued that it was likely that there would need to be legislation in the English jurisdiction to protect against genetic discrimination, as in the United States.
However, I think I had most fun in the ‘poster session’, for me on Friday afternoon. I had the unexpected pleasure of chatting with Karen Harrison Dening at my session, over the need for a network of national clinical nursing specialists. As it happens, Karen has just published a brilliant book on culture and dementia, which I strongly recommend.
Thanks hugely to Chris and Colin McDonnell (@ColinMcDonnell) in helping me enormously during the poster session, which I do find stressful every time (particularly when you have curled up posters so vehemently they have no chance of sticking onto the board!)
This was for me the most interesting poster of the whole conference – on challenging behaviours, by Kate.
This blogpost explains its rationale in part. Even putting aside the general consensus that the dementias are under diagnosed in many jurisdictions, there’s a feeling that the recent scrutiny in dementia policy has overall helped.
Every 4 seconds someone in the world develops dementia. It’s vital we provide support, both now and in the future pic.twitter.com/qOURmB6IZg — ADI (@AlzDisInt) April 30, 2015
I was particularly impressed by the research presented by Prof Martin Prince on behalf of his group at King’s College London. I think Prof Prince has a clear understanding of the critical assumptions of his work, as you would expect him to have. I had a long chat with him after his lecture. He struck me as a very sincere, thoughtful man, who was open to wider repercussions of his work. In particular, we shared a common interest in seeking accurate estimates for the global prevalence of younger onset dementia.
The beginning of the conference (@ADIConference), I felt, was very surreal but pretty magical. I don’t particularly like the word ‘indigineous’ as I feel Aborigines as it can further division and divide, and I feel that Aborigines have experienced a very bad deal culturally from others exerting racial and cultural imperialism.
Here, I feel some of us must show some solidarity.
I personally bought a didgeridoo which I gifted to my mother on return (although I am mindful of the physiological limitations of the use of didgeridoo as a musical instrument by females). I was surprised to hear that didgeridoos (sic) are not permitted in hand luggage, however.
The conference itself was incredibly well organised. You can still access the book of abstracts for the conference here and wider information about the programme. I helped to review abstracts for the conference; I was indeed on the international advisory board for the conference, so reviewed abstracts for dementia friendly communities and younger onset dementia.
I am at the end of policy involved with living better with dementia, which includes advocacy across jurisdictions. I found an intense sense of hope and confidence from the conference, as opposed to the shock doctrine of Pharma which can be striking elsewhere in global policy on dementia.
The “vanguards” of dementia advocacy, globally, one may argue, are Kate Swaffer from Australia and Helga Rohra from Germany.
So it came to pass that we were all hugely proud when Kate Swaffer, Co-Chair of the Dementia Alliance International, a group consisting of people living with dementia, came to give her plenary.
I understand that videos of talks given by members of the Dementia Alliance International will be uploaded onto their website in due course.
Here’s for example Helga Rohra, Chair of the European Persons with Dementia, giving her plenary. I was deeply honoured to be name-checked in her talk. Helga is a friend, and someone whom I deeply respect.
(video from the DAI You Tube channel)
One of the plenary speakers was Al Power (@alpower12), Allen Power. Basically, I thought Al is terrific. I have now read his book “Dementia beyond disease”, which I feel is a groundbreaking reframing of the narrative towards treating people living with dementia as individuals with dignity, and how they should not be the target of pejorative language or assault through inappropriate medication.
I have known of Mick Carmody for ages. Mick has been instrumental in ‘rallying the troops’. I anticipate that his enthusiasm and focus will lead to greater things in global advocacy.
But I fell in love with Mick and his wife Sue from the moment I met them. They’d come from Brisbane, Queensland, and were hugely thrilled about participating in an international conference on dementia. Mick lives with dementia in Australia, and, it’s fair to say, had not been given sufficient or appropriate encouragement, pursuant to diagnosis. What changed the game for him was finding the Dementia Alliance International.
I am a card carrying member of the club that individuals who’ve been given a diagnosis of dementia are all unique individuals with a huge amount of experiences, and it’s not what people cannot do, as with us all, but what people can do. Here are Helga Rohra and Chris Roberts, powerful Dementia Friends Champion ambassador for the United Kingdom, as described here in the popular Alzheimer’s Society magazine “Living with dementia”.
Helga is simply larger than life, and I found many things Helga shared with me profoundly interesting. Society has come a long way, but there’s still a long way to go. Helga, I suspect, speaks up for a vast army of people who’ve been given a diagnosis as part of a large social movement, expecting dignity, acknowledgement of human rights, expecting improved employment relations post diagnosis, and calling for holistic care.
The #ADI2015 was simply triumphant for the Dementia Alliance International. I think part of this confidence has come from the new strategic alliance with the Alzheimer’s Disease International organisation, which has supported DAI, but gone to great lengths to preserve the autonomy of DAI. This brand new arrangement is described in a recent ADI “Global perspective” newsletter. Credit must be given to Kate Swaffer (@KateSwaffer) and Marc Wortmann (@marcwort), CEO of ADI, who, I feel, have been instrumental in making this vaguely possible. Thanks especially to Marc Wortmann for his kind remark about my (minimal) contribution to the #ADI2015.
It’s dangerous to underestimate how Kate Swaffer has totally altered the terrain of attitudes towards dementia, in a positive way. Kate was diagnosed with the temporal variant of frontotemporal dementia, and the personal story is well described elsewhere.
I travelled around Australia after the conference too with Chris, and I hugely enjoyed meeting John Sandblom (@jball49), Treasurer of DAI. We all basically agree John is a top bloke!
Here’s a picture of Chris Roberts, Mick Carmody and Sue Carmody having a look at the posters presenting the latest research into the dementias at #ADI2015. That #ADI2015 was successful in disseminating research to people living with dementia, comprising 10% of the delegates of the conference, I feel is a huge achievement.
I found Daniella Greenwood entirely focused on what the needs of the people with dementia in the care sector are. In the Australian jurisdiction, persons are called “consumers”. Parking this difference in terminology, the plenary given by Daniella emphasised the critical importance of relationships, and I feel this is to be broadly welcomed, in her analysis of ‘consumer directed care‘.
Chris was often to be seen manning the DAI stall in between satellites and plenaries at the Conference. But the atmosphere there was “buzzing”.
We did enjoy each other’s company. I’ve known @TruthfulKindnes (@truthfulkindnes) for ages, living with a constellation of dementia symptomatology in the United States.
One of Tru’s list of achievements has been acting like a conduit for the creative expression of many people living with dementia. She specifically mentioned, for example, the experience of visual hallucinations. Visual hallucinations can be a predominant feature, for example, of the diffuse lewy Body type of dementia, an important cause of younger onset dementia, typically with a fluctuating way of symptoms appearing.
Having witnessed Tru’s desire to promote the work of people living with dementia, and her wish to use her gift in public speaking to inspire people, I know how important it was for Tru to make it from California to Australia to promote the experience of people living with dementia.
Tru has a true gift for speaking, with perfectly modulated speech and content.
Finding this hope to encourage others is deeply meaningful. Here, for example, is Simone Willig’s film (@SWHerborn) of Helga speaking about music therapy.
This year there were some truly outstanding satellite symposia. One that springs to my mind was the one on employment and dementia. I contributed there on the need for a greater understanding of disability law by employers in terms of unfair dismissal and discrimination, consistent with Kate Swaffer’s talk there, and I urged the need for cognitive diversity in the approach from employers, resources permitting.
Research was a key pervasive theme of the #ADI2015, which took as its title, ‘Cure, care and the lived experience’. There was a keen sense of learning from each other, across jurisdictions. Again, I thank Marc Wortmann for his lead in the workshop I attended where Chris Roberts gave a powerful overview of the lived experience.
Canada, I felt, offered an useful steer in this workshop on research.
It is a remarkable testament to the solidarity amongst people living with dementia and people close to them that there’s a huge interest in dementia research; but this is, as many us feel, not just about testing new drugs like guinea pigs but a genuine interest in research in care and living well with dementia. Otherwise, in policy terms, I feel that living better with dementia becomes the ‘squeezed middle’ between prevention and the optimistic search for the cure by 2025.
I was struck too by the inclusion of social media in this narrative.
When a diagnosis of dementia is disclosed to someone, quite sadly often in a substandard manner by professionals, there is a clear impact on friends and family. I found the contributions from Jayne Goodrick (@JayneGoodrick) and Kate Roberts, Chris’ daughter, sensational, in telling delegates actually what is happening in real life.
Tru devoted a substantial part of her talk in outlining the importance of the DAI, as well as her “swiss cheese” model of dementia.
Completely by accident, I happened to bump into Glenn Rees (@Glenn_Rees), now Chair of the ADI. Everyone who has been following world policy in dementia is aware of Glenn’s remarkable steer of Alzheimer’s Australia, where he has been instrumental in promoting consumer views; and this has had a profound impact internationally on a number of arms of policy, such as campaigning against physical restraint, and campaigning against the inappropriate use of antipsychotic medication.
Chris, I felt, was a true gentleman, and very engaging as a person. I loved travelling with him in Australia, and with Jayne and Kate. Many happy emotions are brought up in thinking of what we got up to; including Chris’ use of the phrase, “That’s the kind of guy I am!”
And it was incredible to meet for the first time ‘imaginary friends’, quite safe really, such as Jac (@JacintaLynch), here in Adelaide sitting with Chris.
I don’t drink alcohol. The reasons for this are well rehearsed.
But this did not stop me in any way loving the landscape of the environs of Adelaide Hills. Australia is of course well known for famous brand names in wine, and the Barossa Valley. It, ironically, took me a journey all the way to Australia to appreciate ‘black pudding’.
The proof of the pudding was indeed in the eating.
I learnt to trust the restaurant judgments of Kate Swaffer, a pretty mean chef herself (here’s her culinary blog).
I don’t think Kate has the time to write a cookbook on top of her massive list of other commitments – but.. her work can be felt in remote areas too.
And – seriously – I have never eaten such a perfect Thai curry ever (the lower dish): cooked by Kate.
On a completely different matter, I learnt very many things in Australia; not least that kangaroos have big scrotums (sic).
And that Chris can stand very close to emus, looking as if he’s in fact eyeing them up for dinner. One thing I certainly am thankful to Mick for is explaining how emus are bloody stupid creatures.
I didn’t know what to expect from Sydney after the conference. But it turned out to be amazing – I spent time with “guess who” (Kate) and new found close friends Lynda Henderson (@yodsupporter) and Veda Meneghetti (@Veda_Meneghetti).
I have many happy memories of my time in Sydney – here are Veda (left) and Lynda (right).
Veda is fast becoming a leading global ambassador for one of the lesser known of the temporal variants of frontotemporal dementia, the logopenic variant of progressive primary aphasia. She lives with it, and retains remarkable abilities from her life as a professional musician (aside: hence explaining the need for ‘life story’).
It’s yet again a case of what people can do.
Look at this – there’s no way I can sequence rhythms as well as this.
In fact, my supervisor from Cambridge, Prof John Hodges, who also shares a professorial position with Neuroscience Australia (@NeuraAustralia) happens to be one of the leading neurological authorities on this important condition.
I was really impressed with my visit to see Prof Olivier Piguet, a mutual friend and colleagues of colleagues of mine, Prof John Hodges and Prof Facundo Manes. NeuRA, an innovative research hub in Australia, is something truly advancing the frontiers of cognitive neurology.
Whilst I did not have time to go to the Sydney Opera House (I think Kate has seen the iconic ‘Carmen’ there)..
I did have a very long chat with Prof Olivier Piguet. Olivier and I have the same strong interests in social cognition, the somatic marker hypothesis and the functions of the ventromedial prefrontal cortex, anticipation of future events, episodic memory and eating behaviours; the common link being the behavioural variant of frontotemporal dementia. This is of course what I specialised in for my PhD at Cambridge.
It is nice to be involved with promoting research in dementia, if only at a global level and not in this jurisdiction (England).
I am not, however, convinced that a US baseball cap is the best way to do this for me?
I also discovered Olivier is much taller (and wittier!) than me!
Places like NeuRA do inspire me. They should inspire the rest of the global research community in cognitive neurology too.
And Veda, it turns out, was buzzing about the work of NeuRA.
Chris, it turned out, was amazing at throwing a spear as in Aboriginal culture. He did far better than the other visitors at Uluru, but of course it wasn’t a competition. When I delicately asked Chris how he came to be so proficient at throwing spears, he explained that he used to enjoy throwing javelin in school sports. So again it’s about what you can do – and I can’t throw a spear with my chronic double vision!
Chris, a leading advocate for living with mixed vascular and Alzheimer’s disease, was pretty good at boomerangs too.
The landscape around Yulara Drive (and Uluru) was simply gorgeous. This per se of course is nothing to do with #ADI2015, but conveyed the flavour of hope and happiness that was present at #ADI2015.
Chris, Jayne, Kate and I watched Ayers Rock change colour. Jayne in fact recorded a remarkable time lapse video of this.
Chris taught me how to take photos of people; consisting of 2 eyes and 1 ear.
Ayers Rock gave us plenty of time to think about the beauty of Australia.
But we had to ease our way back to the real world in a thud, albeit via a 4.5* hotel in Sydney near the international airport.
Currently, there is quite a lot of convergence in mutual research interests. Here for example is output from Alzheimer’s Australia taking as a spotlight prevention and social determinants of health (discussed in my new book).
This was my old book ‘Living well with dementia‘ (from 2014), which I didn’t “flog” at #ADI2015 (though many were well aware of it, which humbled me.) The large poppy on the front is courtesy of, and photographed by, Charmaine Hardy (@charbhardy).
I got Kate, Helga and Al to sign a copy of my book published last year – in a completely narcissistic way (I do apologise.)
I myself met ‘virtual friends’, such as @JoanneAgnelli whose work on language and dementia is widely respected.
My new book (“Living better with dementia”) is significantly more discursive than the last one, and should be published around 21 July 2015. Thanks very much to Jessica Kingsley for publishing it. It contains a chapter on whole person (integrated) care, which is due to reach a prominence, hopefully, after the UK’s general election on May 7th 2015.
The ‘stub’ will give you a flavour of the topics I will cover.
“What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields”
And I think #ADI2015 has paved the way for this book (and my final one which will be on living at home and residential care settings in more progressed living with dementias.)
It more than nauseates me when I see undisclosed conflicts of interest. It makes me violently pissed off.
I don’t like it when Big Charity does not disclose that a document promoting early diagnosis of dementia, without calling for better resources for workforce training or post-diagnostic support, was sponsored by a drug company.
Conflicts of interest are not necessarily materially significant, but it is for members of the general public to judge. The Declaration of Helsinki makes it patently clear that negative results should be published as well as positive results.
There’s a fundamental problem with the case for screening for Alzheimer’s disease. Even if there were an inexpensive reliable test which is sensitive to early deficits in cognition in people with early Alzheimer’s disease, and that test is not sensitive to other medical conditions such as pure unipolar depression, the case for screening cannot stand.
This is due to two reasons. The track record of Big Pharma in finding a cure for Alzheimer’s Disease in the last two decades at least has been abysmal, whether you’re talking about symptomatic treatment or slowing of progression for a meaningful number for a meaningful time period.
Secondly, and equally significantly I feel, is that we simply don’t have money going into what living better with dementia might look like – where for example are trials into looking at GPS tracking systems for people with dementia, or for music improving quality of life?
I am in fact in the 1%, but not in the traditional general election sense. I am the “other” that does medical research.
I am regulated on the medical register, but do not get paid in any form for the research. And yet I have presented on my own at Alzheimer’s Europe and I am about to present at the Alzheimer’s Disease International conference in Perth later this month.
But there’s point in rubbishing what I do.
I have published one book ‘Living well with dementia’ last year, starvation in the midst of plenty bookwise, meaning that there are few evidence-based books on wellbeing in a climate where there’s no shortage of funds for research apparently.
I am about to publish another. Even though I get no support in doing so, I actively promote research into dementia.
That was a half-truth, in fact.
I once got a free T shirt, and I actively promote research into dementia.
There are people in this country whose energy I could never match – such as Chris Roberts, Tommy Dunne, Agnes Houston, Tommy Whitelaw.
There are people abroad who are utterly amazing. I won’t embarrass them by naming them.
And frankly I couldn’t give a damn about people with long titles and important positions who proclaim themselves as ‘experts’ into dementia, whose self-righteousness I can spot a mile off.
It is not hyperbolic to say that this self-congratulation is to some extent justified by me having a huge return on investment – that is, my return on investment is astronomical given that I do not receive any grants.
Many people with dementia, and people closest to them, care about my research, and I care about that.
It is estimated that in 2015 there will be 850,000 people living with dementia.
Having decided at the beginning of last year that I would to any conferences on dementia, I found myself attending the Alzheimer’s Show in London Olympia and Manchester; the Alzheimer’s Association conference in Copenhagen of a book signing, Alzheimer’s Europe conference in Glasgow (which was themed on autonomy and dignity; and human rights), Alzheimer’s BRACE in Bristol on the future, Dementia Action Alliance Annual conference 2015 and the Dementia Action Alliance Carers’ Call to Action 2015. So, in other words, I utterly failed.
I will be a guest on a panel in the plenary discussion for “Leading Change in Dementia Diagnosis and Support: Actions to Inform Future National Strategy” to be held at the King’s Fund on Tuesday 24th February 2015.
Panel discussion: shaping a new national strategyTake this opportunity to put your comments and questions to our expert panel about the key issues that need to be addressed when designing and delivering the next national strategy. George McNamara, Head of Policy and Public Affairs, Alzheimer’s Society in conversation with:
James Cross, Area Manager and National Lead for Dementia and Mental Health, Skills for Care
Gary Rycroft, Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
Beth Britton, Expert by Experience
Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger
Dr Shibley Rahman, Academic in Policy of Living Well with Dementia
Chris Roberts, Expert by Experience
Chris is in his early 50s and is living with young onset vascular dementia. Chris is a dementia friend champion and writes a regular blog to raise awareness.
The following are very familiar “mutual tweeps” to me, and I wish them all well for their involvement on the day too.
Professor Alistair Burns (@ABurns1907), National Clinical Director for Dementia
NHS England and Professor of Old Age Psychiatry, University of Manchester
Jean Tottie (@Jean_Tottie), Chair of the Life Story Network and Former Carer
Jeremy Hughes (@JeremyHughesAlz), Chief Executive, Alzheimer’s Society
Dr Martin Brunet (@DocMartin68), GP, Programme Director, Guildford GP Training Scheme
Rachel Thompson (@raheli01), Admiral Nurses Lead, Dementia UK (invited)
George McNamara (@George_McNamara), Head of Policy and Public Affairs, Alzheimer’s Society
Richard Humphries (@RichardatKF), Assistant Director of Policy, The King’s Fund
Beth Britton (@BethyB1886), Expert by Experience
Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger
Gary Rycroft (@garyrycroft), Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
Tony Jameson Allen (@SportsMemNet), Director, Sporting Memories Network, and Winner of the Best National Initiative Award at Alzheimer’s Society National Dementia Friendly Awards 2014
Last year, I got off my backside and published my first book on dementia. Called “Living well with dementia: the importance of the person and the environment“, the aim of it was not to sell the ideology of ‘person centred care‘. It was instead a well meant introduction to the original work of Prof Tom Kitwood and personhood, which has been pivotal in double declutching away from the Pharma stranglehood on dementia postdiagnost pathways. My point was that a person living with dementia had a past and present which were going to influence his or her future, and an interaction with the environment (such as the outside world or ‘built environment’, assistive technology, design of the home, design of the ward, dementia friendly communities) were major determinants of a positive wellbeing.
The book was broad-ranging, and I felt signified a change in direction of the narrative away from ‘treatments for dementia’. I also tried to cover in a balanced and fair way how the National Screening Committee had arrived at their original decision not to recommend screening for dementia. This decision has now been upheld. As it happens, I agree with the conclusion of the National Screening Committee, but for slightly different reasons. I feel a lot of people focus on the lack of sensitive and specific inexpensive screening tests – and this must be correct. But I also feel that because of the minimal effort to build up an extensive coherent evidence base on the effect of psychosocial interventions on living well with dementia, you are never going to be able to satisfy the last requirement, of improving morbidity (if you cannot improve mortality).
I essentially don’t want to rain on the parade of wanting to find a cure or effective symptomatic treatments before 2025. But this expectation, I feel, has to be much better, as the track record in developing treatments thus far has been poor. It is now well appreciated that G8 dementia was ultimately contrived as a reaction to Big Pharma on dementia, and it must be acknowledged, I feel, resources allocated into Pharma should not be at the expense of relatively inexpensive methods for promoting living well with dementia for people who are currently living with a diagnosis.
My original contents were therefore as follows:
Foreword by Professor John R Hodges; Foreword by Sally- Ann Marciano;Foreword by Professor Facundo Manes; Acknowledgements; Introduction; What is ‘living well’?; Measuring living well with dementia; Socio-economic arguments for promoting living well with dementia; A public health perspective on living well with dementia, and the debate over screening; The relevance of the person for living well with dementia; Leisure activities and living well with dementia; Maintaining wellbeing in end-of-life care for living well with dementia; Living well with specific types of dementia: a cognitive neurology perspective; General activities that encourage wellbeing Decision-making, capacity and advocacy in living well with dementia; Communication and living well with dementia; Home and ward design to promote living well with dementia; Assistive technology and living well with dementia; Ambient assisted living and the innovation culture; The importance of built environments for living well with dementia; Dementia- friendly communities and living well with dementia; Conclusion; Index.
The essence of my emotions about ‘living well with dementia’ is that living well with dementia is not a slogan to sell a product or service. It is a genuine change in philosophy from the medical model, of diagnosis and treatment, to one which requires a long term care revolution. As Prof Sube Banerjee said last year at the Dementia Action Alliance annual conference, we don’t need high volume diagnoses which are of low quality; although we all agree that it is unacceptable that people should be languishing for ages waiting for a diagnosis, and diagnostic rates of people who want to be diagnosed appear poor. We need high quality diagnoses. And even Baroness Sally Greengross, the Chair of the All Party Parliamentary Group for dementia, readily admits that the post-diagnostic care and support could and should be much better.
Against quite a lot of resistance from people in the medical profession which at best was complete indifference and lack of recognition of my work, I found many people in the general public who have thanked me for my work. I am completely independent, so I do not draw an income from any of my work apart from minimal royalties for the book. I paid my way to go to all conferences I went to last year. I will again be paying my own way for travel and accommodation to go to the 30th Alzheimer’s Disease International conference in April 2015 in Perth, on “cure, care and the lived experience“.
I was specifically asked last year by a panel representing the General Medical Council which people had benefited the most from my book. They expected me to say Doctors, but in all honesty I reported that the book had been extremely positively received by caregivers and people with dementia.
And I was staggered when a colleague of mine sent out this innocuous tweet which was well receive which had 151 ‘favourites’.
I do passionately want things to change for people with dementia and caregivers, but I don’t think of myself as a player in change. I don’t call myself anything in wanting change to living well with dementia; this is particularly because I really don’t believe in job descriptions or titles. I get fussy about the fact I am a person living well with recovery from alcohol, and physically disabled, but I am not ‘ill’ and as such I don’t see myself as a ‘patient’. I am on the medical register, but I do not feel defined by that (I have spent a few years not on the medical register due to consequences from when I was actually exhibiting symptoms of an illness). I have written numerous papers and two books on dementia, but I do not see my self as an ‘academic’. But I am hugely passionate about English and global policy.
I don’t want post-diagnostic care and support in my jurisdiction to be so haphazard. I totally sign up to the drive towards better inclusivity and accessibility for people with dementia, but I personally wouldn’t call this policy drive in this country or abroad “dementia friendly communities”. I would feel uneasy with a policy called “black friendly communities” or “gay friendly communities”, as these terms encourage division for me. Besides, I know from my personal experience with disability that all manifestations of disability are not necessarily evident to external observers. To take as an example, I see double all the time due to a problem with my brain, after my six week coma due to meningitis in 2007 when I was in a coma. But no-one, from looking at me, would know that. I understand that some people who are disabled, even if they fit the ‘criteria’ of the term, do not wish to call themselves ‘disabled’.
But the point is that there is now extensive legal advice about the relationship between equality and human rights law and mental health (for example chapter 3 in the new code of practice over the Mental Health Act just published). I have in fact been invited to be on a panel to review what I anticipate to be a very influential document looking at how the law is influencing dementia policy from the Mental Health Foundation early this year. Putting this stuff on a legal footing means that it’s a serious requirement for facilities to be more than aspiration in meeting ‘dementia friendliness‘; it then becomes a legal obligation. Under this view, one would provide adequate signage for people known to have spatial navigation difficulties from a dementia, in the same way that you might build a wheelchair ramp for employees who used wheelchairs in your company.
I feel that this narrative is moving my way, and in the direction away from being given your diagnosis and the conclusion ‘nothing can be done’. Kate Swaffer, in Australia, has elegantly articulated this in detail as “prescribed disengagement” (for an excellent article on this, please see here). Kate has also written a paper on stigma in the Dementia Journal, which is particularly interesting as Kate lives with a dementia herself.
It is a general ignorance of dementia that was thought to contribute to stigma and discrimination against dementia. I often ask London cabbies what they know about dementia; these individuals tend to be extremely well informed about many things, but I have found that unless they have a personal ‘connection’ with someone with dementia they can know very little (but are extremely regretful about not knowing more). The “Dementia Friends” in the UK jurisdiction had an aspiration of making one million ‘dementia friends’, a figure arbitrarily plucked out of nowhere, but presumably based on the successful Japanese “befriending” campaigns.
They had a target of one million ‘dementia friends’ by March 2015 originally, but I understand that this initiative will now run for the whole of the year. And, at the time of speaking, they look as if they might just make it, according to their website:
I am a “Dementia Friends Champion”. I did my own Ph.D. in dementia at Cambridge under Prof John Hodges. I was the first person in the world to suggest a cognitive method for diagnosing behavioural variant frontotemporal dementia and explain its rationale. This paper is even cited in the chapter on dementia in the current Oxford Textbook of Medicine. I quite enjoy my sessions. I invariably get asked tougher questions in these sessions, which are well received, than I have ever received in academic conferences.
1. Review the evidence on progress on dementia care and support over the last five years to identify where progress has been made, key challenges and gaps and priorities for action. This will include looking at the evidence on risk reduction and how the incidence of dementia could be reduced.
2. Consider what success could look like by 2020 in the following broad areas:
Improving the provision and continuity of personalised health and social care for people with dementia and carers – this includes risk reduction, prevention, diagnosis, post-diagnostic support, the role of technology and new models of care.
Promoting awareness and understanding.
Building social engagement by actions of individuals, communities and businesses.
Boosting dementia research capacity and capability, the opportunity for individuals to get involved in research and optimising knowledge transfer and pathways to impact.
Improving support for carers including improving their health, wellbeing and experienc
Cross-cutting: Supporting the education, training and development of the health and care and wider workforce.
Cross-cutting: Global action on dementia
Cross-cutting: Ensuring equity of access, provision and experience
This will include looking at what we can learn from international evidence and experience.
I feel that this would form a coherent strategy.
Whilst traditionally, it might be useful to consider campaigning for dementia in terms of ‘cure’, ‘care’ and ‘prevention’, in reality living well with dementia potentially straddles all three areas.
I believe it’s extremely important to have a large body of people with dementia and carers report back on what their needs are. Such committees have had a long history of involving people with dementia and carers which might appear tokenistic. The World Dementia Council has not even appointed a person living with dementia to sit regularly on their Council.
As far as future post-diagnostic care and support is concerned, we clearly can no longer have a situation where, once a diagnosis is made, some people with a diagnosis, friends and family are totally lost in the system, or even at worst lost to follow up. There appears to be little coordination of care, and sometimes there’s more signposting to services than actual services. There seems to be little coordination of information held for practitioner and professional care in primary and secondary care, and between health and social care. We have a ridiculous situation where people with dementia, some of whom can do very badly when they are admitted to hospital partly due to a distressing change in environment, cannot be discharged in a timely manner from hospital due to social care cuts in service provision.
There is a clear drive to person-centred care, and I feel a very good way of discovering personhood is to adopt a ‘life story’ approach. I anticipate that networks for life story and carers will be invaluable during the lifetime of the next parliamentary term 2015-20.
The current Government has continued with the longstanding policy drive towards personalisation promoting ‘choice and control’. However, there are nuances to how policy can be implemented; for example a rights-based advocacy approach might be considered by some preferable to the promotion of personal budgets, which poses issues about the lack of universality of care, scope for co-payments, further marketisation, and complete lack of choice if you run out of money.
The next Government will be bequeathed developments in the handling of NHS data for service care provision, and of course the new Care Act. Some reflections are here on the Care Act:
I feel the the main challenge, in my opinion, in policy is to introduce safely and in a competent way “whole person care“. It’s going to take a lot of bottle to integrate properly health and social care, with all the challenges which endure, including breaking down organisational boundaries, cultural silos, facilitating competent knowledge sharing sand transfer, and a complete cultural change unfreezing from the biomedical model to one which recognises abilities not making feel inadequate because of their disAbilities. I would very much like to see the medical profession put some effort into the annual ‘follow up’. The point of this check up is not to chart with meticulous accuracy has changed in brain scans, psychology, or blood tests, meritorious though these initiatives are. The point about these follow ups is to ensure that there is a synchronised system of post-diagnostic care and support and everything is being done to improve living well with dementia (for example encouraging social networks and mitigating against social isolation). I feel personally the next Government should implement a “year of care” for dementia.
This change can only come from a social movement led by the major stakeholders themselves – people living with dementia and caregivers. A “top down reorganisation” will not work.
And I would prefer leaders in dementia not to be a Prime Minister but in fact to a person living with dementia. I think that way the needs of people currently living well with dementia will be better addressed, not just in service provision but also in research spend. I believe strongly that people newly diagnosed should have access to ‘dementia advisers’ and a properly resourced network of clinical nursing specialists. These nursing specialists are vital in pro-active case management, but the evidence base does need exploring further. The development of the personalised care plan, which can hopefully avert crises to encourage relaxed effective care out of hospital where possible. I have written about dementia specialist nurses, previously, here.
My interests are reflected in my new book ‘Living better with dementia: looking to the future’ due to be published on June 18th, 2015.
The contents are here.
1. Introduction. 2. Framing the narrative for living well with dementia. 3. Thinking globally about living well with dementia. 4. Culture and living well with dementia. 5. Young onset dementia and living well with dementia. 6. Delirium and dementia: are they living well together in policy. 7. Care and support networks for people living with dementia. 8. Introduction to autonomy and living well with dementia. 9. Can living well with dementia with personal budgets work? 10. Incontinence and living well with dementia. 11. Nutrition and living well with dementia. 12. Art and creativity in living well with dementia. 13. Reactivating memories and implications for living well with dementia. 14. Why does housing matter for living well with dementia. 15. Networks, innovation and living well with dementia. 16. Promoting leadership. 17. Seeing the whole person in living well with dementia. 18. Conclusion.
I think this book is more ambitious than the first one. In keeping with my original research interests, I consider why art and music are so important for living well with dementia. I also propose a new theoretical framework, the first in the world to my knowledge, why reactivation of “sporting memories” works. The “Sporting Memories Network” has been a very impressive initiative thus far in promoting wellbeing.
Finally, I wish everybody luck in formulating our new English dementia policy to be implemented within the lifetime of the next Government. It is imperative that the views of the community of people living with dementia and the army of approximately 5.4 million unpaid caregivers are prioritised above the needs of others, I feel, above all.
I will be presenting two posters on attitudes amongst the general public towards the ‘G8 dementia’ event as it was then.
I was aghast that out of 75 web articles that the phrase “Living well with dementia” wasn’t used once.
There was a huge bias towards the medical model of dementia. Respondents overwhelmingly felt that the major beneficiaries of that event were large charities, politicians and Pharma, and the people who benefited least were the actual persons living with dementia and caregivers.
I am honoured to give one of the oral presentations.
Information asymmetry between insurance provider and person is a big source of problems. I will showing preliminary data that the two phenomena “moral hazard” and “adverse selection” are likely to be demonstrated in attitudes of people who had received a genetic diagnosis of dementia.
However, I will be raising awareness of the danger of a policy based purely on genetic risk and private insurance; without safeguards against genetic discrimination, such a policy would be likely massively to disadvantage individuals with a higher family-based risk of dementia.
I am hugely grateful to my Twitter followers for taking part in my online surveys.
I am, finally, hugely grateful to the individuals living with dementia and caregivers, as well as other members of the public, who continue to drive the work that I do in dementia.
“Or when we shouldn’t be put in a freezer, when we our caregivers go on holiday. We too should take a vacation from our caregivers.. enjoy the company of other people with dementia and enjoy their company.”
Dr Taylor had explained how there is a feeling of camaraderie when people living with dementia meet in the room. This is somewhat different from an approach of people without dementia being ‘friendly’ to people with dementia, assuming of course that you can identify reliably who the people with dementia are.
We are now more than half way though ‘Dementia Awareness Week’, from May 18 – 24 2014. Stigma, why society treats people with dementia as somehow ‘inferior’ and not worth mixing with, was a core part of Dr Taylor’s speech recently at the Alzheimer’s Disease International conference held this year in Puerto Rico.
He has ‘been going around for the last ten years, … talking to people living with dementia, and listening to them.”
That’s a common ‘complaint’ of people living with dementia: other people hear them, but they don’t listen.
“Stigma defines who we are.. not confined to the misinformed media, or the ‘dementia bigots’. Stigma is within all of us. When I heard my diagnosis, I cried for weeks… I’d never heard of dementia or Alzheimer’s disease, but it was the stigma inside me.”
Commenting a new vogue in dementia care, which indeed I have written about in my first book on living well with dementia, Taylor remarks: “We’ve now shifted to ‘person-centred care’. I think that’s a good idea. I always ask the caregiver who that person was centred was on previously. But I do that because I know I can a bit of a smart-arse”
“The stigma is in the very minds of people who treat us.”
“But you actually believe we are fading away… and we are not all there… it is not to our benefit.”
“The use of stigmas to raise awareness must stop right now.”
” Very little attention is paid to humanity of people living with dementia.. The use of stigma to raise awareness and political support must stop. We must stop commercials with old people.. which end with an appeal for funds. That reinforces the stigma. That comes out of focus groups with a bunch of people they want to focus on.”
“What would make you give money to our organisation? An older person or a younger person… We had a contest in the United States of who should represent “dementia”. The lady who won was 87-year old man staring into the abyss with a caregiver with a hand on her shoulder…”
“Telling everybody with dementia that they’re going to die is a half-truth. The other half without dementia are going to die too. Making it sounds as if people are going to die tomorrow scares the life out of people… scares the money out of people.”
But it seems even the facts about dying appear to have got mixed up in this jurisdiction. Take for example one representation of the Alzheimer’s Society successful Dementia Awareness Week ‘1 in 3 campaign’.
Neither “Dementia Friends” nor “Dementia Awareness Week” can be accused, by any stretch of the imagination, of ‘capitalising on people’s fears”.
And the discomfort by some felt by speaking with some sectors of the population is a theme worthy of debate by the main charities.
Take this for example contemporaneous campaign by Scope.
But back to Richard Taylor.
“How are you going to spend the rest of your lives? Worrying about how you’re going to die, or dying how you’re going to live?”
“I believe there is an ulterior motive.. to appeal to our fear of dying.”
“Stop using the fear of us dying to motivate people to donate to your organisations. It makes us mad and complicates our lives more than it needs to be.”
“The corruption of words to describe people who live with dementia and who live with us must stop.”
Dr Richard Taylor argues that the charities which have worked out how best to use manipulative language are the dementia charities.
“The very people who should be stopping corruption in language are the very ones involved in… “We’re going to cure dementia” What does that mean? Or will it be a vaccine where none of you get it and we all die, and so there’s no dementia any more?”
Taylor then argues you will not find ‘psychosocial research’, on how to improve the life of people with dementia.
“We are heading for more cures.. we’ve set the date for it wthout defining it. If we’re going to cure it by 2025, what will I see in 2018 to know we’re on track? .. It’s corrupt language.. None of the politicians will be around.. But people with dementia will be around to be disappointed.”
Taylor notes that every article rounds off with: “And now with further investigation, there’s a hope this might do this and this might do that.”
Except the politicians and charities have learnt how to play the system. These days, in the mission of raising awareness’, a Public Health and Alzheimer’s Society project, many articles focus on ‘Dementia Friends’, and people can decide at some later date whether they want to support the Alzheimer’s Society.
They could as a long shot decide to support Alzheimer’s BRACE, or Dementia UK. Dementia UK have been trying desperately hard to raise awareness of their specialist nursing scheme, called “Admiral Nurses“.
It all begs the question is the focus of the current Government to promote dementia, or to promote the Alzheimer’s Society?
Take this tweeting missive from Jeremy Hunt, the current Secretary of State for Health in the UK:
According to Taylor, “We need to start helping for the present.”
He is certainly not alone in his views. Here’s Janet Pitts, Co-Chair of the Dementia Alliance International, who has been diagnosed with frontotemporal dementia. Janet is also keen on ‘person centred services’, ‘is very proud of the work [we] have been doing since [our] inception in June 2013′, and is an advocate.
“I am an example of where life is taken away, but where life is given back… [I want us to] live well with dementia, advocate for people with dementia, reduce stigma in dementia.”
This was the famous selfie from the Oscars which went viral all over the internet, partly thanks to social networking sites such as Twitter.
But this snap photo explains why Liza Minelli was unable to make it.
That things might not be quite as they first appear is nothing new.
Kate Swaffer (@KateSwaffer), living with dementia in Adelaide, has remarked in the past how she feels like a duck all serene on the surface, but paddling really hard underneath.
The co-production of public services has been defined in a variety of ways – e.g. “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours” (New Economics Foundation).
Or in the alternative, “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” (Governance International).
Research into dementia, more so following the G8 Dementia Summit, has been dominated by analysis of Big Data genetics with a view to ascertaining risk pools and personalised medicine, possibly means for asymptomatic screening or early detection, and new pharmacological interventions.
The amount of resource allocation put into this some might say has not been matched by the successful outcomes from this research, though the corporate capture in the large charity, politics and media are well known.
But I believe strongly research into quality of care, or indeed living well with dementia in support settings, should not be regarded as ‘inferior’.
Careful research attention should be put into assistive technologies, assistive living, the innovation culture, design of wards and homes, and, of course, how you measure living well in the first place.
Co-production, however, offers a chance for people with early dementia to be able to shape the services for care, as well as to shape research.
I have latterly become involved in a crowdfunding campaign where I explain the critical importance of decisions for a person with dementia in the science of dementia as well as the implications for our law on mental capacity.
But I also want this to initiate a dialogue between people with early dementia and other interested parties with the law and neuroscience, and other possible stakeholders such as the NHS.
I’m mindful that my book ‘Living well with dementia’ does look through the “personhood lens” – a lens which has done much to challenge the stigma and discrimination associated with dementia – and some people don’t like that.
Darren Gormley (@mrdarrengormley) immediately pointed me to an area of work, in particular a paper called “From personhood to citizenship: Broadening the lens for dementia practice and research” by Ruth Bartlett and Deborah O’Connor in Journal of Aging Studies 21 (2007) 107–118.
“One of the main boundaries of personhood is its lack of political dimension. In cognate literatures, including social gerontology, critical psychiatry and disability studies, a citizenship lens is used to promote the status of discriminated groups of people to that of an equal citizen, with the same entitlements as everyone else.”
“These disciplines use citizenship to understand and expose discrimination against marginalized groups such as people with physical disabilities and to reframe and politicize understanding of the experiences of people with mental health conditions; the scope of this work is wide ranging and goes beyond care issues to include discrimination in the workplace and communities generally.”
The need to promote citizenship, as well as personhood, is beginning to be recognised within the dementia care literature, and I am hoping that this with an emphasis on living well with dementia will percolate into the research arena too.
A result of this shift is that, gradually, research has begun to emerge aimed at capturing the perspectives of persons with dementia. This body of research now clearly documents that persons with dementia are often quite aware of their situation, and can contribute important and unique insights about their experiences and needs.
“In addition, people with dementia were generally regarded as a ‘sufferer’ lacking insight into, and ability to articulate, their situation. This discourse silenced people with dementia. However, since attention was drawn to personhood and the exclusion of the perspectives of persons with dementia in understanding and influencing the dementia experience the focus has shifted to incorporating the voices and understandings of persons with dementia into both research and practice.”
However, my own particular interest is research for dementia, so this intrigued me massively since, if you pardon my phraseology, some of my best friends live successfully with dementia.
“The importance of making the shift to citizenship is further evidenced when one considers the potential direction of dementia care research. Currently, Alzheimer’s Society, UK has people with dementia on its research review panel, and there is a small (growing) body of literature to help academic researchers involve people with dementia more creatively in the research process.”
“People with dementia are clearly seen and treated as important players in the research process. However, little of the research looking at user perspective has gone to the next step of either pulling together or examining what happens in research projects in a way that is political.”
“For example, in most user perspective studies, individual needs are spoken of and contextualised using themes or general categories related to care provision; data are not generally seen in the wider political context of the need for social change.”
“Additionally, people with dementia are rarely involved in the early formulation and planning of projects, which raises questions about the relevance of current research to people with dementia. The point is not to criticize user perspective studies but to highlight how a shift to citizenship would ensure people with dementia were seen and treated as people with power, specifically people with the power to instigate and shape the research agenda.”
And that for me is the issue of a two tier nature of who decides research agendas in practice.
Kate Swaffer and I often discuss behind the scenes our concerns about ‘tokenism’, both from quite different personal viewpoints but with similar themes.
How things appear might not actually how they are in reality.
And I’m clearly bound to be very happy that currently there’s a massive ESRC grant looking into this.
“Finding that people with dementia are willing and able to campaign, and presenting this at national and international conferences, has captivated academics and improved their understanding of people with this condition.”
This also has profound implications for service development for dementia consistent with the current trajectory.
A rhetoric of ‘user involvement’ became a central part of NHS policy during the establishment of the Community Health Councils in 1973. This had continued through the proliferation of “New Public Management” principles and the growing importance of measures of satisfaction in the 1980s. The NHS and Community Care Act[1990] established a formal requirement for service user involvement in service planning.
From 1997, patient and public involvement were a central tenet of New Labour’s NHS modernisation agenda, and the NHS Plan was committed to creating a patient-centred NHS with user needs at the centre of service design and delivery.
Arguably, the roots of the phenomenon of ‘experts by experience’, potentially an abreaction to the medicalisation of mental illness, can be found in a history of mental health activism as far back as 1620, when inmates at “The Bedlam Asylum” petitioned for their rights.
After some initial disgruntlement, I’ve now decided I would never dream myself of being an ‘expert’ in anything to do with dementia, but rather a well-informed enthusiast.
People living with dementia and all carers including unpaid caregivers are the real experts.
The somewhat political term “survivors” refers to those who have survived not only their mental health difficulties, but also experiences of psychiatric services, and/or the accompanying general social exclusion.
Or you can the viewpoint, particularly if you’ve been influenced by some, that ‘users’ of mental health services are ‘consumers’ and help to design them.
A lack of co-production possibly caused the problems in entitlement and funding which meant Sally (@nursemaiden) was at the receiving end of a bad experience of services looking after her father who was living with dementia.
@RichardatKF@legalaware Thank you Richard I still feel at times I let him down that I should have fought harder against the system.
In fact Sally has written about this in the Foreword to my book.
What unites both the consumerist subject position of service user and the position of “survivors”, is that they are both legitimised by virtue of their experiences of mental distress and/or of service (ab)use, and seek progressive developments in the treatment, perception and governance of the experiences of mental health.
I’m one such survivor, as I’m in recovery from alcoholism for seven continuous years now. I also live with physical disability.
It’s not enough merely to ‘involve’ carers though; carers patently need to be involved in research as without them the entire service would collapse. And carers themselves often need support, over all sorts of health issues, legal or financial matters.
It’s also essential to ‘involve’ people actually living with dementia who may or may not have some similar concerns, and some different.
But ‘involving’ is not enough.
I feel passionately that people with early dementia should be given the power and control to shape the research agenda in their interests, such as the brilliant work by Ruth Bartlett. This may or may not include living well with dementia: that’s not my choice, but I’m pretty sure I know what the answer might be. Otherwise, ‘co-production’ is merely an illusion of involvement, and as regards living well with dementia is not at all what it seems. Suffice to say, I am not afraid about shouting loud about this on behalf of people living well with dementia.
