Home » Posts tagged 'chris roberts'
Tag Archives: chris roberts
Why I do “Dementia Friends”
Let me introduce to you to “Dementia Friends” (details here).
The aim is for you to learn some fundamental information about what dementia is, so you understand it better than you would’ve done otherwise.
Dementia is caused by diseases of the brain; it can affect any thinking depending on what part of the brain is affected.
It’s not a normal part of ageing; it’s important to live well with dementia.
There’s much more to a person that the dementia.
I’d like to say something which may surprise you, depending on how well you know me.
I don’t really like the term ‘dementia friendly communities’. I totally ‘get’ it is well meant, embracing the concept that people living with dementia can go out in their communities at large, talk to people, go shopping, and lead a happy life.
But there are problems with the concept. I think it ignores the fact there are so many different causes of dementia, each with different ways in which they affect a person’s life. These dementias can progress at different speeds too.
I’m also worried about inadvertently creating division. There are enough divisions in society, e.g. rich vs poor, disabled vs non disabled, sick v well, for example.
I worry about the issue that to be dementia friendly you can immediately recognise disability. I’ve always had to bite my touch when people claim you can easily spot dementia in the community, so much so young schoolchildren can spot dementia even when experienced GPs cannot.
Dementia, like all other disabilities, can be invisible.
The term ‘dementia friendly community’ poses the same issues in principle as ‘gay friendly community’, therefore, one could argue.
Nonetheless, I feel the starting point policy-wise is that there is a huge amount of public ignorance about the dementias. The media have been notorious at misrepresenting dementia; even the term ‘epidemic’ is problematic, whatever the exact truth about numbers and definition, given that there are some people who believe that the dementias are essentially contagious.
I regularly ask London cab drivers if they’ve heard of dementia. Invariably, after saying ‘yes’, those cab drivers then can’t tell me much about dementia. These are generally well informed individuals, however. They readily admit they wish they knew more.
For me, it’s easy to underestimate what people know about dementia. I did a medical junior job at the National Hospital for Neurology and Neurosurgery in it. I also did my Ph.D. in it.
But I am in no way an expert.
One of my best friends, Chris Roberts, living with a mixed dementia of Alzheimer’s disease and vascular dementia, is a Dementia Friends Champion. He says, if he is an expert, he is an expert in his own dementia at this particular time.
Chris is on the left of the picture above; Jayne on the right. The “thing” in the middle, by the way, is a “selfie stick”, currently all the rage in England.
Thanks to the audio visual unit at BPP Law School for their helping me for my Dementia Friends sessions.
Here’s a short excerpt of the Dementia Friends information session we gave on 4 December 2014, together with Jayne Goodrick.
Our details are here.
It shouldn’t be the case that people who’ve been given a diagnosis of dementia feel somewhat frightened to tell their friends or family. We know loneliness is a big problem for many who’ve received a diagnosis of dementia in England.
I love doing ‘Dementia Friends’.
We never ‘force’ our Dementia Friends infocards and badges onto people!
I came to the programme with the same cynicism as many, wondering what was ‘in it’ for the charity involved in implementing it. I am genuinely worried about lack of diversity in the dementia charity sector, and potential abuse by one or two key providers of ‘dementia services’.
I also came to the programme with concerns about whether the messages or activities of Dementia Friends would be accurate.
I am generally very happy with the messages which Dementia Friends gives out, and the feedback has been overall very positive. No initiative is perfect by any means, and I think ‘Dementia Friends’ is as good a national programme, for what it does, as it could be. It was a major proposal from the 2009 English dementia strategy, entitled ‘Living well with dementia’.
The anonymous feedback we received from our December session was very positive.
The questions I regularly receive at my sessions are much harder than the ones I receive at international conferences on dementia. Such questions have included, “How can we promote the dignity of a person living with dementia?”
I think though, overall, the “Dementia Friends” initiative has succeeded.
Detailed analysis will see whether it has indeed been successful in turning ‘understanding’ into ‘action’. But I think there are currently about 600000 Dementia Friends at the time of writing is a major triumph.
Please book yourself into a Dementia Friends information session to decide for yourself. My next session is at BPP Law School in Holborn, London, on January 15th 2015. Details are here.
The 24th Annual Conference for Alzheimer Europe put people with dementia in the driving seat. Deservedly so.
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.
And Beth Britton (@BethyB1886).
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.
Marc represents ADI at international conferences and in the NCD Alliance and takes part in WHO and UN meetings. I was also able to bump into Jean Georges (@JeanGeorgesAE), the Executive Director of Alzheimer Europe.
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.
Here’s a great slide of @alzscot‘s “PANEL” (pic taken by @LauraMcC86).
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 had brought along my book ‘Living well with dementia’, but I rarely got a chance to read (or refer) to it during the course of the whole week!
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.
I had designed that I would be staying in the same competitively-priced hôtel as Jayne Goodrick (@JayneGoodrick) and Chris Roberts in Glasgow for the 24th Alzheimer Europe conference held in Glasgow, the city where I was born.
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.
And here’s co-author Dr Peter Gordon (@PeterDLROW) proudly in front of our poster too!
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 am well aware of why the Scottish dementia nursing strategy, some say, has become the ‘envy of the world’. It was a huge privilege to meet in person Janice McAlister (@JaniceMcAlister), who was BJN Nurse of the Year Elderly Care 2013. In addition, I found the presentation by Hugh Masters (@HughCMasters), Associate Chief Nursing Officer for the Scottish Government, interesting for insights as to how England might improve its service too.
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.
Karishma Chandaria (@Karishma1000) chaired this exceptional day’s workshop, called a ‘masterclass’ on dementia friendly communities, which indeed mentioned the code of best practice for dementia friendly communities currently under consultation.
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!
You need risk to live well with dementia
“Risk” is one of those entities which bridges the financial world with law and regulation, psychology or neuroscience. The simplicity of the definition of it in the Oxford English Dictionary rather belies its complexity?
It was a pivotal part of my own Ph.D. in the early diagnosis of the behavioural variant of frontotemporal dementia, awarded by the University of Cambridge in 2001. I was one of the very first researchers in the world to identify that ‘risk seeking behaviour’ is a key part of the presentation of many of these individuals, against a background of quite normal other psychological abilities and investigations including brain neuroimaging scans.
‘You need to break eggs to make an omelette’ is one formulation of the notion that you have to be able to make mistakes to achieve an overall goal. That particular sentence is, for example, used to convey the way in which you might have to put up with ninety nine turkeys before striking gold with one truly innovative idea. ‘Nothing ventured nothing gained’ is another slant of a similar idea. Interestingly, this phrase is often attributed to Benjamin Franklin. Franklin has an established reputation of his own as a ‘conceptual innovator‘.
It’s also a very interesting policy document on risk in dementia from the UK Department of Health, from 10 November 2010, a really useful contribution. This guidance was commissioned on behalf of the Department of Health by Claire Goodchild, National Programme Manager (Implementation), National Dementia Strategy. The guidance was researched and compiled by Professor Jill Manthorpe and Jo Moriarty, of the Social Care Workforce Research Unit, King’s College London.
Prof Alistair Burns, England’s clinical lead for dementia, has written a very focused and relevant Foreword to this piece of work. Here Alistair is, pictured with me earlier this week at the Dementia Action Alliance Annual Conference hosted in Westminster, London (“DAA Conference”). The event was a positive celebration of the #DAACC2A, “Dementia Action Alliance Carers’ Call to Action”, which embodies a movement where, “carers are acknowledged and respected as essential partners in care, and are supported with easy access to the information and the advice they need to assist them in carrying out their role.”
Risk enablement, or as it is sometimes known, positive risk management, in dementia involves making decisions based on different types of knowledge. However, people living with dementia and caregivers, quite often an eldest child or spouse, can handle risk in different ways. I feel that understanding living well with dementia is only possible through understanding the background to a person living with dementia, and his or her interaction with the environment. I’ve indeed written a comprehensive book on it, and I am in the process of writing a second book on it, which brings under the spotlight many of the key stakeholders, I believe, who contribute to “dementia friendly communities”.
Risk enablement is based on the idea that the process of measuring risk involves balancing the positive benefits from taking risks against the negative effects of attempting to avoid risk altogether. For example, the report cites the example of the risk of getting lost if a person with dementia goes out unaccompanied needs to be set against the possible risks of boredom and frustration from remaining inside. There are clearly various components of risk which might affect a person living with dementia. Risk engagement therefore becomes a constructive process of risk mitigation, an idea highly familiar to the law and regulation through the pivotal thrust of ‘doctrine of proportionality‘, that legislation must be both necessary and proportionate.
Risk enablement, it is argued, goes far beyond the physical components of risk, such as the risk of falling over or of getting lost, to consider the psychosocial aspects of risk, such as the effects on wellbeing or self-identity if a person is unable to do something that is important to them, for example, making a cup of tea. Therefore, the report proposes that “risk enablement plans” could be drawn up which summarise the risks and benefits that have been identified, the likelihood that they will occur and their seriousness, or severity, and the actions to be taken by practitioners to promote risk enablement and to deal with adverse events should they occur. These plans need to be shared with the person with dementia and, where appropriate, with his or her carer or caregiver. Thus advancing the policy construct of ‘personalisation’ offering choice and control, risk assessment tools are envisaged by the authors to help support decision making, and should include information about a person with dementia’s strengths and of his or her views and understanding about risk. Risk could apply to making a cup of tea, or going for a walk. We know that people living with dementia handle risks in different ways. For some people, a person living with dementia excessively walking beyond a local jurisdiction might be a known problem. For all the different causes of dementia medically, and for all the different ways in which individuals react to a dementia at different stages of the condition, a person can live with dementia in a sharply distinctive way.
Risk therefore in a hugely meaningful and substantial way has moved away from the “safety first” circles? And it fundamentally will depend on how an unique person living with his or her dementia embraces the environment in reality.
The idea that you need risk to live well with dementia is brought into sharp focus here by Chris Roberts, a friend of mine, speaking at the DAA Conference. I have recently begun to take risks in a highly enjoyable game for my #ipad3, which Chris indeed introduced me to, called, “Real Racing 3″. Here, Chris also talks about the crass way in which he was originally told his diagnosis, and lack of information about his condition given at the time of diagnosis. Therefore, Chris, I feel, brings into sharp focus a number of problem areas, which hopefully Baroness Sally Greengross and colleagues will address in a new five year strategy for England for 2015-20.
Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making
There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.
The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.
Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.
It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.
Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.
Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.
“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”
“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”
“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”
The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.
The National Dementia Strategy makes reference to such activities being ‘purposeful‘:
And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:
When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’
Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.
Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.
As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.
I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.