It reflects Kate Swaffer talking about people with dementia and caregivers being ‘equal partners’. I couldn’t agree more.
This is my enhanced version of ‘no decision about us without us’. It’s my way of saying “do not inadvertently create division” by making people with dementia seem like targets of a ‘does he take sugar?’ attitude. I feel personally that the ‘dementia friendly communities’ policy globally, as outlined here by the Alzheimer’s Disease International, is working well, away from the tokenistic patronising crap many of us have warned against.
And good on for @KateSwaffer, Chair of the Dementia Alliance International, for not only getting a seat at the table, but also making herself comfy at it and sending rhetorical nuclear missiles at the establishment.
In case you missed it you can watch it here. Kate spoke just after Jeremy Hunt in the session on Monday morning in Geneva, 16 March 2015.
Kate believes that “we must all include this in her goal”, “to think about how can empower people to live better with dementia”. But Kate was aghast that there had been no mention of rehabilitation thus far in the proceedings.
Kate explained the need for better care, services and research into living better with dementia.
These are the three aims which Kate promoted.
Kate called the ‘prescribed disengagement‘ which accompanied the disclosure of her diagnosis ‘unethical’. She emphasised, “we don’t have a cure yet. we all know that. we are not that much closer to a cure.”
In the article for Dementia journal, Kate describes it powerfully thus:-
“Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?
This Prescribed Dis-engagementTM sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”
Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.
The families and partners are also told they will have to give up work soon to become full time ‘carers’. Getting yourself acquainted with residential care is recommended. All of this advice is well-meaning, but based on a lack of education and misperceptions and myths about how people can live with dementia. This sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being; it can mean the person with dementia behaves like a ‘victim’ or ‘sufferer’, and many times their care partner as a martyr.”
She emphasised, “We need psychosocial interventions, and research into them.”
“It’s very clear to me that I could’ve stayed at work, and paying taxes.”
Kate made reference to some of the groundbreaking research which is happening to look at improving quality of life.
Early intervention offers the possibility of helping people with early-stage dementia (PwD) and their carers to manage the impact of the disease on everyday life, and reducing or delaying the progression of disability. “Cognitive rehabilitation” involves identifying realistic and achievable goals reflecting areas of everyday activity where the PwD experiences difficulty due to changes in memory and other cognitive abilities, and wishes to see improvements. needs are addressed in the context where they arise.
One thing’s certain: Kate has played a blinder. In speaking so powerfully about the importance of wellbeing for individuals who’ve received a diagnosis of dementia, she has put a new set of cards on the table. Far from dismissing the effort for finding the cure, which she calls ‘the golden egg’, Kate has drawn attention to the 470 million or so people in the world living with dementia, and the crucial need for them to be involved in policy. Kate Swaffer undoubtedly has left a significant legacy in rights for individuals living with dementia which has been carefully now seeded in a number of jurisdictions.
Kate and I are making available a limited number of tickets for our joint event, to celebrate publication of our books on dementia later this year. This event is mainly by invite-only. If, however, you wish to be considered for one of these other tickets, we’d be delighted to meet you. Details of the event are here. We provisionally intend to hold this event on Saturday 27th June 2015 between 12 pm and 6 pm at the Arlington Centre, Camden. 1. Kate Swaffer (@KateSwaffer) and Dr Shibley Rahman (@legalaware) intend to do a joint book launch later this year. Both books are being published by Jessica Kingsley Publishers later this year. Kate’s book is called, “What the hell happened to my brain?” Details are here. Information about this book:
“Kate Swaffer was 49 years old when she was diagnosed with a rare form of young onset dementia. Here, she insightfully explores issues relating to that experience, such as giving up employment and driving, breaking the news to family, having a suddenly reduced social circle, stigma surrounding dementia and inadequacies in care and support. Kate also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis. Kate’s empowering words will challenge preconceptions on dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones. The book will also be of interest to dementia care professionals.”
2. Shibley’s book is called “Living better with dementia: looking forward to the future”, as a follow-up to his irst book “Living well with the dementia: the importance of the person and the environment” which was received with critical acclaim. Details are here. Information about this book:
“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.”
Kate and Shibley have decided to make a limited number of tickets for this free event for this book launch available to all, but the event is generally by invitation only. If you’d like you to be considered for one of these limited number of tickets, please do let us know. Dr Shibley Rahman @legalaware
But Kate Swaffer added to it beautifully in the journal ‘Dementia’, with an article today – on open access – entitled “Dementia: Stigma, language and dementia friendly”.
Kate refers to a blogpost by Ken Clasper, a Dementia Friends Champion, which asks, sensibly, what we are trying to achieve with more ‘awareness’.
And if you scroll down to the end of this tour de force on stigma and dementia, you’ll see exactly why Kate is able to opine with such legitimacy and authority.
I conceded a long time ago – in March 2014, in fact – on this blog that the policy plank of ‘dementia friendly communities’ is an incredibly complex one.
The discussion of stigma seems to be one of perpetuity. We’ve seen numerous attempts at it, including the original work of Goffman (1963) on stigma and ‘spoiled identity’.
The report, New perspectives and approaches to understanding dementia and stigma, published by the think tank International Longevity Centre UK (ILC-UK) is produced by the MRC, Alzheimer’s Research UK, and Alzheimer’s Society; it was also supported by Pfizer.
I’ve thought how I could possibly respond to Kate. And I can’t, as Kate is in every sense of the word an ‘expert’.
But it did get me thinking.
It got me thinking of the happy times I had with Chris and Jayne last week at the Alzheimer Europe conference in the city of my birth in Glasgow.
‘There’s more to the person than the diagnosis” is one of the key five messages of ‘Dementia Friends’, an initiative from the Alzheimer’s Society predominantly (and Public Health England). This is mirrored in a tweet by Chris from this morning.
Last week, I attended a brilliant all-day workshop chaired by Karishma Chandaria, Dementia Friendly Communities manager for the Alzheimer’s Society. The progress which has been made on this policy plank is substantial, and I am certain that the next Government will wish to support this policy initiative in the English for 2015-20.
It is stated clearly in Simon Stevens’ “Five Year Plan” for NHS England.
And the ‘coalition of the good’ has seen the dementia friendly communities policy plank develop drawing on work from ‘Innovations in dementia’ and the Joseph Rowntree Foundation.
But this code of practice does, again, have the potential to be very divisive. It might be painful to make dementia friendly communities, such as the large one in Torbay, ‘fit into this box’.
Torbay in many ways is a beacon of innovation for integration between NHS and care. There is genuine “community bind”, with citizens, shopkeepers, transport, police, for example, contributing.
Any top down way of making bottom-up social groups ‘conform’ will be hugely problematic in the implementation of this approach to dementia-friendly communities, potentially.
The methodology of dementia friendly communities has to be truly inclusive: it is all or nothing.
I agree with Kate, and like her I wish to avoid protracted circular definitions of ‘stigma’. For me, I recognise stigma when you see it, like how the Supreme Court of the US recognises erotica and pornography as per Jacobellis v Ohio [1964].
It is possibly easier to define stigma by its sequelae, such as avoiding wishing to talk about dementia in polite conversation, or not wishing to see your GP about possible symptoms of a dementia in its early stages, or not wanting to socialise with people with dementia who happen to be in your family.
We know these are real phenomena, as demonstrated, for example, by the loneliness of many people on receiving a diagnosis of possible dementia.
And we know stigma can harbour deep-seated irrational prejudice, like the incorrect notion that dementia is somehow contagious like a ‘superbug’.
Stigma can be exhibited in pretty nasty ways in language: such as “snap out of it” or “victim”.
My discussion of whether people living with dementia are ‘sufferers’ tends to go round and round in circles with people who disagree with me.
Suffice to say, I agree it is possible for a person living with dementia, such as a person who has received a diagnosis of Lewy body dementia and who has to put up with terrible “night terrors” and exhaustion the following day.
I think if you live independently, but with full insight into your symptoms, it can be exasperating. I have never been in that position though, and it would be invidious of me to second-guess.
I think if you are close to someone in the latter stages of dementia, you can suffer.
But I’ve written about this all, indeed on this blog, before here.
The only thing that is new is Peanuts’ cartoon (original citation here).
In that workshop, I also sat through Joy and Tone Watson’s brilliant “Dementia Friends” session. Joy lives with dementia. And their session was brilliant.
This was the final ‘exhibit’.
I attended a special group session on stigma with Toby Williamson from the Mental Health Foundation during that day. In that session, it was mentioned that ‘rôle models’ of people living well with dementia might help to break down stigma.
Or maybe guidance for the media might help? One cannot help wondering if an article such as in the Daily Mail today might actually put off people from seeking a diagnosis of dementia (completely unintentionally).
But I did bring up something on my mind.
“Stigmata” literally means signs.
But dementia can be, like other disabilities, quite invisible.
Somebody might have insidious change in personality and behaviour, noticed by somebody closest to him or her, with no obvious changes in cognition (nor indeed in investigations).
As Toby Williamson says, if you’re obliged to build a ramp for somebody in a wheelchair for a place of work, there’s an equal obligation to produce adequate signage for people who have navigation problems as a result of a dementia such as dementia of the Alzheimer’s type.
I personally think it’s brilliant you can go into certain shops, and the customer-facing staff will, potentially, be able to recognise if a person does need time and space to pay for items.
Also, corporate lawyers should be advising large employers about the scope for unfair dismissal claims by people dismissed as they are about to arrive at a diagnosis of dementia (particularly young onset dementia).
The timeline is roughly this. Somebody has health problems – he or she is invited to leave and given a pay off – these health problems turn out to be a diagnosis of probable dementia – by this time the dismissal is not unfair.
I feel confident the ‘dementia friendly communities’ policy strand in England, and across other jurisdictions, is here to stay. I share, though, Kate’s concerns that about the relative ease with which this policy has lifted off, say, compared to how one might feel about ‘gay friendly communities’ or ‘black friendly communities’. One has to be extremely careful about any policy plank which alerts people to divisions, “them against us”.
This is what I know best as the “don’t think of elephants phenomenon” and then you think of elephants.
This policy, anyway, currently has huge momentum. Marc Wortmann is currently Executive Director of Alzheimer’s Disease International (ADI), the organisation providing a global voice for dementia and the founder of World Alzheimer’s Month. Wortmann has been instrumental in propelling dementia friendly communities to the foreground of world policy.
But, in firing up ‘dementia friendly communities’ (a term which I think is sub-optimal’), v 2.0, there is plenty of time to get it right.
The biggest dementia conference to be taken place in Scotland (“Conference”, attended by 800 professionals, people with dementia and carers) was held in Glasgow last week (20-23 October 2014).
The focus of the conference was Dignity and autonomy in Dementia and the four day event explored in quite some detail how recognising the human rights of people with dementia, their carers, partners and families is key to ensuring dignity and respect, as well as overcoming stigma.
It was the 24th Annual Conference of Alzheimer Europe (@AlzheimerEurope, an umbrella organisation of 36 Alzheimer associations from 31 countries across Europe), supported this year by Alzheimer Scotland, .
The timetable was exacting.
The people there were very special; for example Tommy Whitelaw (@TommyNTour) mentioned in Alex Neil MSP’s speech at the conference. Tommy and Irene Oldfather (@IreneOldfather) happened to be passing through during one of my poster sessions.
Well done to the conference organisers for putting it together, especially Gladwys Guillory.
The main conference hall of the venue, the Crowne Plaza in Glasgow, the Argyll Suite, was majestic.
I particularly liked the ‘live Twitter feed’ at the front of the hall, where curiously Kate Swaffer (@KateSwaffer) appeared many times all the way from Australia. Here I am appearing with my ‘selfie’, with somebody well known in the foreground of the photograph.
The relative failure of the medical model in addressing the needs of people with dementia and caregivers was a pervasive theme throughout the whole conference.
I had a nice chat with Marc Wortmann (@marcwort) over one of the lunches. Marc is in charge of all aspects of ADI’s work (ADI = Alzheimer Disease (and associated conditions) International; @AlzDisInt). Collaborating with the Board, Marc implements finance and campaign strategies.
Cabinet Secretary for Health, Alex Neil, delivered a clear keynote speech to the conference at the Tuesday morning plenary session, in which he paid tribute to the immense contribution of Tommy Whitelaw.
Key to the event was the signing of the Glasgow Declaration: a commitment to promoting the rights, dignity and autonomy of people living with dementia across Europe, as guaranteed in the European Convention of Human Rights and the Universal Declaration of Human Rights.
The satellite symposium sessions were well put together, and attracted substantial audiences.
There was an amazing moment when Agnes Houston (@Agnes_Houston), Chair Scottish Dementia Working Group, said to Helga Rohra (@ContactHelga), the Chair of the satellite session and Chair of European Persons With Dementia, “All we people with dementia need is a bit of help — AND A BIT OF TIME!”
A quotation from Agnes – from a previous conference – says it all for me.
The audience burst out laughing.
The reason for this is that Agnes had been originally timetabled to have more time for her slot, apparently.
As the conference was themed around the law, including human rights, invariably discrimination against people with dementia came up in various forms.
I asked about the topic several times.
One talk of the entire programme which I thought was truly outstanding was PL1.3. Gráinne McGettrick (Alzheimer’s Society of Ireland): The UN Disability Convention as an instrument for people with dementia and their carers.
In the English jurisdiction, dementia can count as a disability; therefore there are statutory requirements for ensuring dementia-friendly communities from employers. Also, unfair dismissal of a person on account of being newly diagnosed with dementia will clearly be unlawful.
A member of the audience politely pointed out to me afterwards that a person normally gets sacked first, and then gets his or her diagnosis of dementia confirmed much later, so at the point of dismissal the dismissal does not obviously appear unfair legally.
I found this observation incredibly insightful, as there have been thus far no ‘test cases’ of unfair dismissal on grounds of a diagnosis of dementia in the English jurisdiction.
I asked several times why there is no representative of persons living with dementia or caregivers on the World Dementia Council (@WorldDementia). The background to this fiasco is explained here.
It was by chance we gave a lift to Dr Ruth Bartlett (@RuthLBartlett) to the conference venue. Ruth was staying, as it turns out, in the same competitively-priced hôtel.
Ruth is of course well known for her well respected contributions about the citizenship of of people living with dementia, and how this has influenced the ‘involvement’ of people with dementia in policy.
This was us just before the opening ceremony – when we were full of energy.
I really enjoyed speaking with Geoff Huggins (@GeoffHuggins), who gave an excellent speech in the opening ceremony.
I presented my talk on how dementia healthcare would not be best served by a private insurance system, because of the potential problems of ‘moral hazard’ and genetic discrimination.
This talk was, overall, well received.
I was particularly pleased with the wide-ranging, excellent discussion we had after my talk. Thanks especially to Amy Dalyrymple (@Amy_Dalyrymple), Head of Policy for Alzheimer Scotland, whose contributions in all areas of policy were particularly interesting. The work currently being implemented in Scotland represents a culmination of very high quality inclusive work through a number of different stakeholders.
I was also honoured to present two further research posters, which I had co-authored on the perception and identity of the G8 conference.
Chris Roberts (@mason4233) helped me with the poster session. It was in fact Chris who identified that the phrase “living well with dementia” was not used even once in the top 75 web articles on #G8dementia on Google, in about 44000 words odd.
All around the conference were people whose work is directly relevant to my book: for example Silke Kammer – on the arts and music – and Emma Killick (@RealEmmaKillick) who at the excellent MacIntyre leads on children and adults with learning disabilities and/or autism, but is clearly passionate about people with learning disabilities who later have further unaddressed needs on receiving a diagnosis of dementia.
It was terrific to bump into followers everywhere I went. It was great to meet Julie Christie (@juliechristie1) for the first time, whose work on resilience I am much interested in. It was also lovely to see Anna Tatton (@annatatton1) doing so well.
I happened to meet in the foyer of the Crowne Plaza on Monday night Ann Pascoe, @A_Carers_Voice, somebody who I have not only liked a lot on Twitter, but whose work on rural ‘dementia-friendly communities’ I have massively respected for some time.
Likewise, it was really nice to catch up with Caroline Bartle (@3SpiritUKNZ), who very kindly once did an infographic of my book ‘Living well with dementia’.
I met in the poster session Prof Mary Marshall to whom the Stirling School in design in dementia owes a huge amount. I owe a huge amount to Prof Marshall too, as the Notting Hill masterclass which I once attended got me first interested in this subject a few years ago (I had a long chat with Prof Marshall there.)
There were not idle tokenistic sops to people living with dementia, and their closest ones, in the whole conference. They were at all times integral to the fabric of the conference.
For example, the seating arrangements in the main Argyll conference suite reflected the special respect given to people with dementia and those closest to them.
The substance of the conference for the most part was of an exceptionally high standard in policy; there was next to no shilling of commercial projects.
The work from Alzheimer Scotland (@alzscot), including, predictably, the work focused on autonomy and dignity, and human rights, was showcased in an impressive way. Their work hangs together as a coherent, forceful narrative of meaningful significance for the Scottish jurisdiction.
It also has clear implications for how England conducts itself south of the border, notably, for example, in a right to timely diagnosis, and a right to timely care and support (including proper coordination of care and support).
In common with Scotland, England is trying to tackle hard the inappropriate use of antipsychotics. Dr Karim Saad (@KarimS3D) gave an excellent talk on this subject, drawing on recent findings from the ALCOVE2 study.
Scotland, in fairness, seems to be having less trouble with its policy than England is.
There was a very good sprinkling of cutting-edge research relevant to all practitioners in the field.
For me, the conference had the feeling of a happy wedding without any of the arguments.
Here are Agnes and Donna.
Whilst originally ‘unkeen’, I ended up having a wonderful time at the “Gala Dinner”. The entertainment – traditional Scottish music and dance – was amazing.
I was able to chat with Agnes and Nancy for some time. What a joy.
Elaine Hunter (@ElaineAHPmh) gave an excellent presentation on the transformative changes which had happened around the workforce in Scotland, including leadership from allied health professionals.
Without doubt, a skilled workforce for the provision of dementia services is essential, not gimmicks.
I consider Helga to be a true friend too. Meeting Helga was akin to being wowed by Lady Gaga.
I had last felt like this when I met Norman McNamara (@norrms) at the Queen Elizabeth II centre in London, Westminster.
I learnt a lot from the all-day workshop on building dementia friendly communities.
Over lunchtime, Joy Watson gave a brilliant ‘Dementia Friends’ (@DementiaFriends) session. I, in fact, was total awe as I am also a ‘Dementia Friends Champion’, and discovered many tips how to run my sessions in future!
This is a brilliant film exhibiting the passion which Joy puts into her Dementia Friends sessions.
Chris Roberts made time to hand out flyers for membership of the ‘Dementia Alliance International‘, an unique campaigning group run wholly by people living with dementia.
This Conference mapped topics clearly onto people living with dementia and caregivers, for which the organisers of this event must be heavily congratulated.
Next year’s Conference will be in Slovenia. I’ll be there! Bring it on!
There is no doubt the ‘World Dementia Council’ (WDC) is a very good thing. It contains some very strong people in global dementia policy, and will be a real ‘force for change’, I feel. But recently the Dementia Alliance International (DAI) have voiced concerns about lack of representation of people with dementia on the WDC itself. You can follow progress of this here. I totally support the DAI over their concerns for the reasons given below.
“Change” can be a very politically sensitive issue. I remember going to a meeting recently where Prof. Terence Stephenson, later to become the Chair of the General Medical Council, urged the audience that it was better to change things from within rather than to try to effect change by hectoring from the outside.
Benjamin Franklin is widely quoted as saying that the only certainties are death and taxes. I am looking forward to seeing ‘The Cherry Orchard” which will run at the Young Vic from 10 October 2014. Of course, I did six months of studying it like all good diligent students for my own MBA.
I really sympathise with the talented leaders on the World Dementia Council, but I strongly feel that global policy in dementia needs to acknowledge people living with dementia as equals. This can be lost even in the well meant phrase ‘dementia friendly communities’.
Change can be intimidating, as it challenges “vested interests”. Both the left and right abhor vested interests, but they also have a strong dislike for abuse of power.
I don’t mean simply ‘involving’ people with dementia in some namby pamby way, say circulating a report from people with dementia, at meetings, or enveloping them in flowery language of them being part of ‘networks’. Incredibly, there is no leader from a group of caregivers in dementia; there are probably about one million unpaid caregivers in dementia in the UK alone, and the current direction of travel for the UK is ultimately to involve caregivers in the development of personalised care plans. It might be mooted that no one person living with dementia can ever be a ‘representative’ of people living with dementia; but none of the people currently on the panel are individually sole representatives either.
Roger was keen to emphasise to me that you must listen to the views of people with dementia in developing innovations. He has written at length about the implementation of ‘user groups’ in the development of designs for assistive technologies. Here’s one of his papers.
My Twitter timeline is full of missives about or from ‘patient leaders’. I feel one can split hairs about what a ‘person’ is and what a ‘patient’ is, and ‘person-centred care’ is fundamentally different to ‘patient-centred care’. I am hoping to meet Helga Rohra next week at the Alzheimer’s Europe conference in Glasgow; Helga is someone I’ve respected for ages, not least in her rôle at the Chair of the European Persons with Dementia group.
I really do wish the World Dementia Council well. But, likewise, I strongly feel that not having a leader from the community of people living with dementia or from a large body of caregivers for dementia on that World Dementia Council is a basic failure of democratic representation, sending out a dire signal about inclusivity, equality and diversity; but it is also not in the interests of development of good innovations from either research or commercial application perspectives. And we know, as well, it is a massive PR fail on the part of the people promoting the World Dementia Council.
I have written an open letter to the World Dementia Council which you can view here: Open letter to WDC.
I am hopeful that the World Dementia Council will respond constructively to our concerns in due course. And I strongly recommend you read the recent blogposts on the Dementia Alliance International website here.
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.
Or Beth Britton’s consistent work on raising awareness of issues about caring.
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.
it was on the back of a joke that Chris Roberts and Kate Swaffer, both friends of mine, had GPS trackers on me.
I intend to tackle the potential beneficial use of GPS trackers for some people living with dementia at significant risk of travelling way beyond their local environment.
And travelling beyond my comfort zone is exactly what happened to me at the end of last week.
I ended up at the Alzheimer’s Show in Manchester, to give a 20 minute skit on my book ‘Living well with dementia‘.
Tommy Dunne and Chris Roberts, bosom buddies, sat together in a little section of the workshop. I could spot they were listening to every word.
Jayne Goodrick asked me a gentle question – unlike the question I asked from Prof Stuart Pickering Brown the day previously,
“I’d like to ask Prof Pickering Brown, but this question applies to the rest of the panel too, how the millions spent on Big Data and identifying genetic factors for Alzheimer’s disease and frontotemporal dementia, like TREM2, can be rationalised in the context of a social care system on its knees, with zero hour contracts and breaches of the national minimum wage?”
I had of course pre-warned the panel that the question would be incomprehensible, as I am disabled.
Jayne said the question was ‘coded’, but Prof Pickering Brown likewise answered in code.
And he took the question well – I had a chance to thank him for all the work he does on frontotemporal dementia, and he asked me to pass on his personal regards to Prof John Hodges.
John is one of THE leading experts in frontotemporal dementia, well respected around the world in academia.
More importantly, he is looking forward to my new book, “Living better with dementia: how champions can challenge the boundaries”.
Chris especially feels, and Tommy agrees, that a much more suitable title would be ‘Living better with dementia.”
Now that Chris has explained it, I completely agree. “Living well with dementia” implies imposition of your judgment as to what living well is.
And whatever your objective level of living might be, nobody can deny a need to live better.
It took me some time to get it, but I did in the end.
A bit like how the penny dropped with Tommy’s joke about urinating with the door open.
But I loved ‘The Alzheimer’s Show’ as it felt truly as if I was amongst friends – and I met people whom I have only met on Twitter, who were truly lovely : Suzy Webster, Natasha Wilson, Chris Roberts, Jayne Goodrick, Tommy Dunne.
And I met some wonderful friends from before: Louise Langham, Carers’ Coordinator for CC2A, and Rachel Niblock.
And I met some brilliant people who’d been following me on Twitter, such as Tracey from CareWatch.
I phoned Nigel Ward, the Show Director, and he was brilliant as usual: “Why did you phone me Shibley? There’s no signal in here, and I was only in the next-door cubicle?”
Anyway, I’ve been on and off in the dementia field for seventeen years, which has taken me on various ups and downs, including three months on the dementia and cognitive disorders firm under Prof Martin Rossor as a junior doctor at the National Hospital for Neurology and Neurosurgery, Queen Square.
It’s also seen me go via a 2 year 10 months PhD at the University of Cambridge. I was the first person in the world to demonstrate reliably risky decision-making behaviour in persons with the behavioural variant frontotemporal dementia. It’s a finding which has been resilient for the last fifteen years, having been replicated and explained through neuroimaging.
I am not really into ‘co-production’, mainly having seen it being used as a cover for legitimising some people’s pre-formed agendas.
But I have been heavily influenced by Kate Swaffer who received a diagnosis of dementia some years ago.
The contents of my new book, to be submitted by the end of October 2014, reflect mutual interests of ours. Kate is more than a cook, former nurse, brilliant blogger, and advocate for Alzheimer’s Australia.
I am honoured she is a close friend of mine. She is not motivated by any narcissistic twang.
She is brilliant.
She has taught me more about dementia than anyone I know.
Innovations can not just be about products. They can be about fundamentally a whole new way of doing things.
The traditional large charity for dementia model has its advantages. It, through economies of scale and large operational efficiencies, can implement large projects, liaise with governments, and have a lot of media backing in the implementation of their projects.
The down-side to this is that it can too easily suffocate innovation from small social enterprises. It can also pursue agendas which are biased in one particular direction.
One example is witnessed in the the appointment of the World Dementia Council.
As it is, large charities, in promising to deliver new orphan drugs for dementia one day, can totally ignore the need for high quality research into living well with dementia. They can treat their associated persons with dementia as ‘subjects’ for future drug trials.
This is incredibly problematic and obstructive for those people with dementia – and their supporters including researchers – who wish to pursue an agenda of quality of life in dementia for current people living with dementia.
Even in the press bulletin for the first meeting of the World Dementia Council, dementia is referred to as a ‘timebomb’.
Currently, the evidence for the feasibility of this approach is very poor, however.
But something quite amazing, and indeed “disruptive”, happened quite recently. To say it could be explosive for international policy is in fact an understatement.
The ADI welcomed Glenn Rees, current CEO of Alzheimer’s Australia, as its Chair-Elect. This is a highly significant appointment, and one which people who promote the living well with dementia philosophy extremely warmly welcome.
So what?
A plucky group of people with dementia emerged, gave talks, and presented cutting-edge research. It was no longer a case of ‘listening to people with dementia’, but rooms packed full of people mesmerised by original contributions from a totally different perspective.
One academic in stigma was overheard to say to a person with dementia: “You don’t look like a person with dementia.”
That person commented that the academic didn’t, either.
Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organisaton that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.
Membership in Dementia Alliance International is free and open to people with dementia only, in any country.
Membership is open to any person with dementia who would like to be part of a global community of others with dementia where members support and encourage each other to live well with dementia, or oin others in fighting against the stigma, isolation and discrimination of dementia.
In addition to the larger countries, there has been interest from Taipei, New Zealand, St Maartens, Spain, Puerto Rico, and Japan, to name but a few. Of course, such an initiative is immediately attractive to a lot of other people who have the cash, including world philanthropists who have some personal connection with dementia.
This group has even been ‘noticed’ by the larger corporates and corporate-like entities in dementia, but people close to this group report that they are desperate to keep their autonomy and identity, despite possible (legal) enticements.
They know that they are on the threshold of massively disrupting current policy. They know they won’t be one or two bums occupying seats on research panels of large charities any more, only.
They will be there now leading the pack.
1. ADI staff get recognition for their work.
2. Final panel on Sunday includes person with dementia from USA, Scott Russell.
3. Final Panel with Scott Russell.
4. Person with dementia from Puerto Rico, Julio, speaks out as keynote. He got the only standing ovation of the morning’s speakers.
5. The DAI team
6. Kate Swaffer, from DAI, before her presentation of her model, “Prescribed disengagement”
In a missive from the Australian Government, Department of Health, it is stated that,
“Dementia is predicted to become the leading cause of disability in Australia by 2016. For these reasons, the Government will take a proposal to the next meeting of Commonwealth, State and Territory Health Ministers that dementia be added to the existing list of eight National Health Priorities.”
Indeed, their Government is introducing a new Dementia Supplement to provide additional financial assistance for dementia care in recognition of the additional costs involved. There will be a significant increase in the number of people eligible for additional assistance as a result of this measure.
This year, at the #ADI2104 conference currently being held in San Juan, Puerto Rico, Noriyo Washizu from the Alzheimer’s Association Japan described how people with dementia can need support and “care in all areas of life 24/7. To achieve Living well with dementia, both of the social resources to meet the special needs of PWDs and their families and case managements ability to utilize them with a sense of ethics are crucial. Along with the development of an aging society, case management in dementia is required to focus more on the whole community and to be more integrated.”
Considering dementia as a form of disability is an important policy issue. In the English jurisdiction, a disability has to be sustained for a certain arbitrary period of time to satisfy the case law. For a chronic progressive irreversible dementia, i.e. the vast majority of dementias such as Alzheimer’s disease, this is likely to be the case. This therefore throws the legal onus onto one of equality, as disability is a protected characteristic, and away from the more gimmicky offerings popular in the English jurisdiction which in reality offer no additional financial support for people with dementia or their carers.
Kate Swaffer, affiliated in this context to the University of South Australia, Adelaide, Australia, had a chance to present her ‘prescribed disengagement’ thesis on September 3 May 2014.
“Following diagnosis, my specialists all told me ‘to give up work, give up study, and go home for the time I had left’! I quickly termed this prescribed disengagement, and thankfully I eventually chose to ignore it. Why is it that one day I was studying a double degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give up work, and give up life as I knew it, and start ‘living’? This prescribed dis-engagement sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.“
She yesterday then described two models of care, one experience supporting continuing engagement, including employment for people with younger onset dementia; the medical model of Prescribed Disengagement versus the disAbility model of Continuing Engagement used in universities.
Following a diagnosis of younger onset dementia, Kate was advised to give up work, give up tertiary studies, and go home to live for the time she had left. It was at this time she termed this Prescribed Disengagement.
Kate writes in her abstract,
“The medical model of care prescribed disengaging from my pre-diagnosis life, which supports and exacerbates social inequality, stigma, isolation and discrimination. If I had been advised to use the disability model of care beyond my university campus, I would have been able to remain in paid employment, and if the symptoms of dementia were seen as disabilities, my employer would have been legally obliged to support continuing employment.”
This is significant from a policy perspective. If there were a system of ‘care coordinators’, perhaps who had especial expertise in advocacy for issues concerning the dementias, it might be that such coordinators could lobby local authorities for financial support so that they could meet their legal obligations in making ‘reasonable adjustments’ for people with dementia. This should not be something that people with dementia should be expected to ‘fight for’. It should be an essential aspect of dementia care and support provision.
Kate also briefly discussed a volunteering project in Adelaide South Australia which supports “the disability model of care.”
Kate writes,
“Treating the symptoms of dementia as disabilities rather than managing them in ways that restrict are vital to well-being, quality of life and motivation. The significant and positive social and financial impact on the person with dementia, their families, and society of being able to stay meaningfully engaged, as well as choosing to remain employed, and its impact on a person’s quality of life, is the final topic of this presentation. ”
And this, ladies and gentlemen, is what I believe policy should be heading to.
Not ‘counting the cost’ of people with dementia, framing the article as a financial burden we should all resent paying for, but valuing the contribution of people with dementia and close caregivers for what they can bring to society in a whole manner of ways.
And of course people with dementia need to be recognised as individuals, with diversity. The massive problem with the term ‘dementia friendly’ is that it encourages a notion of dementia as a homogeneous mass with all one big diagnosis, label and severity, and encourages a ‘them against us’ approach. Being inclusive and integrated are not necessarily the same.
