In August 2015, the Mental Health Foundation published its long awaited report on dementia, rights and the social model of disability. In April 2016, the Alzheimer’s Disease International accepted unanimously a proposal from the Dementia Alliance International to prioritise rights based approaches in their policy on dementia.
The “Dementia Rights” project aims to embed through word of mouth and social action a rights based consciousness towards rights. International statutory instruments and their interpretation are important in their own right, but it is critical that rights are understood by people with dementia. Without this basic awareness, it is impossible for people with dementia to use their rights locally in society.
The aim of this project was to design an initiative building on the known success of ‘Dementia Friends’, launched in 2012 by the Alzheimer’s Society and Public Health England. Whilst this programme has been successful thus far in turning communication into action over basic awareness of dementia, to overcome stigma, prejudice and social isolation, the programme has its limitations. It is not intended principally for people themselves living with dementia. A programme called ‘Dementia Friends’ cannot be aimed mainly at people living with dementia. Furthermore, “Dementia Friends” does not refer to rights.
The rights are pivotal, however, not only internationally but in domestic jurisdictions. The “Dementia Rights” initiative is written in such a way as to cover the main principles of rights, touching on the social model of disability, but is not dependent on any particular domestic statutory instruments, which are in a state of continual renewal.
The information session is designed to take place between 45 and 60 minutes, to be given by a “Dementia Rights Champion” who is neither an expert in dementia nor in public law. It contains two interactive tasks designed to generate discussion.
I hope you get a chance to explore “Dementia Rights”, to be launched officially in Dementia Awareness Week #DAW2016 by the first Dementia Rights Champions.
A previous Government in 1997 launched a white paper consultation into the future of human rights legislation in England and Wales. This document called ‘Bringing rights home’ set out the then Government’s intention to bring onto the statute books a way in which parliament could make it straightforward for its citizens to bring human rights case, without petitioning Strasbourg directly. Access to the European Court of Human Rights in Strasbourg was considered too costly and time-consuming.
Unless England and Wales stop being signatories to the Council of Europe, which is another component of uncertainty from the current administration, citizens in England and Wales will still be able to petition Strasbourg directly, as has been made clear for some time by their Lordships specialising in human rights.
Britain, under a previous Conservative government, had a major influence in drafting up the current European Convention of Human Rights. The rights themselves, such as a right to be free from torture or degrading treatment are pretty uncontroversial themselves. They are a huge factor in allowing citizens to hold their Governments to account. Under current legislation, the Human Rights Act 1998 in England and Wales gives citizens ‘rights’ against anyone carrying out a public sector function such as local authorities for breaches of human rights, and there are few sectors as important in this regard as health and social care.
“Dementia Rights” is a new initiative I have designed, which I intend to launch in Dementia Awareness Week. Dementia Rights, building on the success of “Dementia Friends”, sees dementia not from the perspective of someone who is ‘dementia friendly’ but from the person living with dementia and doubtless many other co-morbidities.
A right gives a person with dementia a license to do something, and these rights are currently legally enforceable through a number of routes. For example, the Equality and Human Rights Commission will see the occasional case of someone discriminated against on the grounds of living with dementia.
The logic is particularly relevant for someone living with a young onset dementia, that is a dementia which has shown itself before the age of 65. These tend to be dementias which are in the early presentations of some traditional late onset dementias, or late presentations of young adult or childhood conditions. They are not merely dementias which have been diagnosed early.
Such citizens tend to have young families or serious work commitments. They particularly need protection against unfair dismissal, that is dismissal for no good reason in no fair way, on the grounds of a disability. This is disability discrimination. The Equality Act (2010), which is not being abolished, indeed brought forward by a previous Labour government but in fact rooted in a consolidating act from previous Conservative instruments, defines dementia to be a disability. If it were to recognise formally a sustained cognitive impairment as a disability in keeping with their definition of a “disability” as “that which has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” in this context, it would be much easier to bring cases to employment tribunals for people being sacked due to a sustained cognitive impairment.
Launching in ‘Dementia Awareness Week’, I hope this will bring an added, a much needed further dimension, to living with dementia apart from future cures and other (predominantly reductionist biochemical) research, ‘dementia friendly communities’ and a social care system on its knees.
‘Dementia rights’ consists of a number of activities designed to encourage a discussion about the unique importance of rights for people with dementia, to emphasise five key messages: these messages are that rights apply to everyone and ought not to be taken away, rights go together with responsibilities, dementia is in law a disability, it is possible to enforce legal rights. and a major function of human rights law is to protect against discrimination.
I am grateful to all members of the public who have expressed an interest in this initiative of mine. I think none of this would have been possible had it not been for the groundbreaking work of Dementia Alliance International working in a strategic alliance with Alzheimer’s Disease International, in particularly the leadership shown by Glenn Rees and Kate Swaffer.
I am, in addition, particularly grateful to two members of the Queen’s Counsel, in the legal profession, who have shared the five key messages. Rights can be restricted in a legal away, but as soon as you deny rights unfairly, such as denying a right to complain, a right to a care home reflecting your sexuality, or a right to culturally appropriate diet, you are on a slippery slope.
The rights based approach is not supposed to replace the medical approach of diagnosis and cure, but I feel has substantially more to offer the rehabilitation and enablement approach pervasive from the social model of disability. A correct diagnosis of dementia should be helpful to all recipients of that diagnosis, not an encumbrance, and I feel promotion of dementia rights locally as well as internationally is now essential for this. Call it ‘Bringing dementia rights home’ at last.
I intend to launch a campaign called ‘Dementia Rights’.
But I should like to say a few words.
I do not wish to give the impression that I am campaigning on behalf of people with dementia on this. This would be to overrule every instinct I have on this. I have always believed that people after a diagnosis of dementia need to be leading on campaigns themselves. What I have found a bit annoying is some people using people with dementia to further their own script. Like an authentic newsreader.
For this reason, I have decided to time the launch of this at an appropriate time in relation to the Dementia Alliance International (DAI). I think the primacy of their work is paramount. With Dementia Awareness Week in the UK coming up, I’d like to ensure that the spotlight is shining on the right targets. I will be supporting ‘Dementia Friends’ as a Dementia Friends champion as usual.
I part company from the ‘Dementia Friends’ initiative a bit in that I feel the campaign caters well people for people who do not have dementia, and unwittingly produces a ‘them against us’ situation. I find the word ‘friends’ a bit patronising, but I know no malice is intended. It reminds me of ‘Does he take sugar?’ – that’s all.
This morning I was asked to discuss about the use of the hashtag ‘#DementiaRights’ not from anyone I work with usually. The criticism is that human rights are universal and therefore should not be constrained for people with dementia. This is of course correct, and it is an argument I have made myself indeed. But on the other hand I do think for too long, as a person outside of the community of people living with dementia, that the rights of people with dementia have been somewhat ignored – take for example the primacy of the ‘dementia friendly’ (rather than ‘dementia inclusive’) approaches, or the inability to segregate carers’ rights from the rights of people living with dementia. I should like to emphasise that carers’ rights are extremely important too for distinct reasons.
I will not be flogging ‘Dementia rights’ to any commissioners. I will make the materials freely available for anyone to use. Money will not be involved in any way. I am very irritated as you know with dementia being exploited for commercial gain.
The material of ‘Dementia Rights’ will not be confined to any particular geographical jurisdiction.
The format of ‘Dementia Rights’ will be, like Dementia Friends, a public awareness session given by anyone. It will have five key themes, and will be built around various activities and an original analogy of mine to explain human rights.
The aim of this initiative is to bomb policy with rights-based advocacy, and to get people talking about dementia rights. I don’t have the infrastructure of Big Charity, or the resources, but never deny the good which can be done from small acorns, to corrupt a Margaret Mead quotation often used by DAI themselves.
Sea Hero Quest was launched today by Alzheimers Research UK. It has been developed by London based studio Glitchers and follows a captain as he tries to recover his father’s lost memories. You navigate the boat but there’s no mini-map within the level, you’re given all the locations to visit at the start of the game from a map.
I downloaded the game for free onto my iPad. It was easy to get into – I quite liked the option also of not sharing the data from my experiments too, but the notion of contribution to a giant experiment through ‘gamification’ is also extremely appealing to many.
I really don’t see how X minutes of playing the game can equate to Y minutes of ‘traditional research’ – but I am not in the least bit bothered about that.
The game was not what I expected it to be. Searching for objects in a task in humans is well known to people who experiment with primates – it’s officially known as a spatial working memory task.
The ‘official’ line on the task is that it somehow taps into the function of the ‘hippocampus’ – a part of the brain near the ear, in the ‘temporal lobe’, so called because it looks like a sea horse (it is claimed) in brain sections. It’s a pretty robust finding since about the late 1970s that the hippocampus is one of the very first parts of the brain to be affected in Alzheimer’s disease.
Alzheimer’s disease is THE most common type of dementia. It strictly speaking is a syndrome of different diseases of varying causes, but typically clinically is manifest as problems early on in learning and memory.
A good example of this, in fact, is in the film ‘Still Alice’, where the person who develops dementia notices early on navigating for a jog around a university campus familiar to her. And indeed it’s a fairly consistent finding that spatial memory, and learning lists of things and names can be difficult for someone relatively newly diagnosed with Alzheimer’s disease.
This task has some validity from the animal literature. In rats swimming to submerged landmarks, the Morris water maze task, it’s well known that if you get rid of the hippocampus with physical destruction rats have real difficulty with this task.
Also, if you chemically manipulate the hippocampi of the rats’ brains with an agent which chemically blocks the way in which memory is laid down, known as ‘long term potentiation’, rats can’t do the task.
There are therefore different types of error – known as ‘between search’ and ‘within search’ errors.
Within-search errors were made if a participant returned to an already searched box; between-search errors occurred if a participant returned to a box that was already known to contain a target item.
There is a long and proud history of research into this, such as this paper.
The problem is – this is vastly to oversimplify the situation. If you extend the time window of the task, it no longer is a task of working memory, but more like a task of a ‘episodic’ memory for events. And the brain area really involved in spatial working memory has a large contribution from the frontal lobe, the part of the brain near the front. We know that this part of the brain tends to be affected later on in Alzheimer’s disease.
Still with me?
There’s a problem also in the programmers’ use of the term ‘dementia’. Dementia is an umbrella term of well over 100 different conditions. Alzheimer’s disease is one of many conditions. But it is conceivable that other dementias may provide different patterns of behaviour on the task.
This is of course no bad thing – as ideally you should want to match up the different cognitive profiles of people playing the game with known diagnoses, such as likely normal ageing, or not.
But this is beyond the scope of the game. And a clear demarcation is made between playing the game for fun, and it NOT being used as a diagnosis of dementia.
But say you have problems in a different part of the brain, such as the parietal cortex. This part of the brain is involved in visual perception, so persons with the posterior cortical atrophy type of dementia might exhibit a different profile altogether.
And why this is relevant is all to do with how space is represented in the human brain.
Space which is allocentrically represented, i.e. objects in relation to each other, are more likely to be expressed in a cognitive map involving the hippocampus. On the other hand, space which is egocentrically related, i.e. related to YOU in space, is more likely to be involved in a map involving the parietal cortex.
As a summary of where these parts of the brain are, see this diagram.
So – it’s likely that behavioural performance on the task will involve performances from a hotchpotch of people, including some people with undiagnosed dementia. There’ll be some people who do badly on the task who don’t have dementia, so might be needlessly worried.
On the other hand, the game is brilliant for people to feel as if they’re participating research, without leaving the comfort of their own iPad or iPhone. And it’s great branding for the people involved in its creation and as a media campaigning tool.
I think the task itself is not a good computerised task. I worked in the lab which developed CANTAB in Cambridge under Prof Trevor Robbins, so there’s a bit of a conflict of interest. I found the music quite irritating actually, which is not fatal for motivation. But I think there is a major motivational confound in this task, where you can simply get bored of it the longer you play it for, affecting performance.
The lack of instructions was potentially a good thing – in that it minimised the confound of language problems affecting task performance. There are also some groups of patients who might be rather oversensitive or insensitive to rewards of any sort – such as people who are impulsive narcissistic at one end, or people who are profoundly depressed at the other end.
It’s also not a good pure test of memory either – there’s a huge perceptual component, evidenced by the great graphics. Also, there is a strong attentional component.
The attentional component is quite interesting though. In 1979, a paper in the Science journal first put the attentional part of the brain on the map, the so-called ‘cholinergic’ chemical system – which is why people are so interested in drugs such as donepezil today (donepezil is an example of a cholinesterase inhibitor.)
I think what would be interesting is if all the hundreds of thousands or millions of performances could be put into a giant database, and some sort of Big Data analysis could be run on it to see if different patterns of performance could be fractionated out. What would THEN be interesting for Dr Hugo Spiers and colleagues from UCL would be then to match up these profiles with known ‘diagnoses’, such as early Alzheimer’s disease, ageing, posterior cortical atrophy.
But this would be to get into the mire of ethical research, research approval and valid consent, perhaps?
I don’t wish to paralyse the greatness of this game by overanalysis. Go and download it, and help dementia research! Well done to the Alzheimer’s Research UK for an excellent collaboration which is very interesting indeed.
I remember once being told that an “alcoholic” is uomebody who drinks as much alcohol as you, but somebody you don’t particularly like.
Culture has an odd way of inflicting labels on people it doesn’t particularly respect. This can be done for entirely political reasons – a need to place a ‘them against us’ division, like the term ‘benefit scroungers’ for people who cannot find gainful employment.
I remember when I went to the Alzheimer’s Show last year, and a senior consultant in psychiatry gave a talk on ‘challenging behaviours and BPSD’. I challenged him at the end for whom did he deem the behaviour challenging – for the person with dementia distressed, or for the professional who wanted a quiet shift?
I then shortly afterwards went to an evening of a drug company sponsored CPD session on frailty. The GP presenting the case study kicked off with the line ’83 y.o. demented F’. I asked the presenter to justify the use of the word ‘demented’ in his case study. He informed me it was about as pejorative, and equally inoffensive, as saying ‘wheelchair user’.
I don’t want to enter into a discussion about normative morality. That is way beyond the scope of this blogpost. But there comes a time when you simply can’t cope with the deluge of cultural impropriety.
Two events happened back to back only yesterday. For example, a friend of mine, in an otherwise good article in a tabloid, was called ‘Dementia sufferer’ in the title. A press release about a forthcoming BBC programme on cures and dementia was littered with the word ‘sufferer’.
But I have recently been doing a lot of work in education of dementia, and it shocks me how entrenched the BPSD dogma is. I simply don’t want teaching I am involved in with to perpetuate knowingly this misfeasance.
‘Person-centred care’ is a much used and abused term. But dealing with failures in communication with a person who lives with dementia but who is distressed is a more ethical (and cheaper) way of behaving, other than pimping money out at Big Pharma.
An individual who’s received a diagnosis of dementia has a right to be angry, agitated, anxious or depressed at conscionable behaviour from a carer or professional, for example. An individual who’s received a diagnosis of dementia is therefore entitled to feel emotions if provoked.
What this situation does not give professionals a right to do is to drug innocent people with dementia always to prescribe antipsychotics inappropriately as a ‘chemical cosh‘.
In parallel to the human right to live with dignity, found in the European Convention of Human Rights which we can all petition over in England and Wales if we are a signatory, irrespective of the Human Rights Act (1999), there’s an expectation that patients of the NHS are not subject to assault and battery from inappropriate medications.
Whilst many of us are saddened by the lack of clarity in the current Government assaulting the legislation over human rights, we also take some comfort in devolution. Scotland is a clear example of an administrative style in one country. Manchester has been another. Maybe with the election of Sadiq Khan in London today we may have another example of a devolved infrastructure, which can distance itself from Westminster, and act as a nestbed for the integration of health and social care?
Be in no doubt – it takes a long time to alter the directions of supertankers. Dementia Alliance International has been campaigning hard on this for a few years now, and as the only influential international stakeholder group run by people with dementia, many of us wish them well.
Community Hospitals Association Challenging Times Improving the experience of dementia care through community hospitals
Friday 13 May 2016 : 1.50 pm
Dr Shibley Rahman, Fellow of the England Centre for Practice Development, Canterbury, UK.
There are about 800,000 people living with dementia currently in the UK. With no effective longlasting treatment as yet, the policy in England is focused as in many jurisdictions from a perspective of living better with a long term condition. A major flaw in English policy, however, is the lack of real substance to the notion of ‘post diagnostic support’, and I will argue that a better approach will be promotion of people living with dementia as far as possible with independent lives. There is an universal entitlement to health, and for me community hospitals are crucial in offering local, personal, care. There is now an overwhelming case for people with dementia to receive right care in the right place, at the right time, in the right way. Lessons are nonetheless to be learnt from how dementia care is delivered in acute large centralised hospitals, though this type of care is important too.
Much can be done to improve the overall experience of dementia care through community hospitals. I will explain the rationale behind ‘dementia friendly environments’ as a genuine success in contemporary English policy. I will also draw attention to the need to reduce inappropriate antipsychotic prescribing, the need to care for carers, and emphasise how specialist nurses in the community are especially important for continuity of care and palliative care approaches. I will draw attention to signposting the critical need to “reframe” post-diagnostic care in English policy as through ‘enablement’. I will explain why is particularly timely with the development of ‘new models of care’, and worldwide initiatives such as Buurtzorg. I will conclude with the need to promote “rights”, in relation to community based rehabilitation, and why I feel an expansion in capacity of community hospitals is so essential now in English dementia policy.
It was a huge achievement for Prof Peter Mittler, human rights advisor to Dementia Alliance International, to get human rights firmly on the map last week. Dementia Alliance International is the main peak body for people with dementia, working closely, but autonomously, with the hugely influential Alzheimer’s Disease International.
We have to talk about the Dementia Alliance International. This is a group entirely of people who are ‘living beyond dementia’, in the phraseology of their leader Kate Swaffer, campaigning for the needs of people living with dementia.
This can mean that they are often highly sought after for their independent, yet massively influential, views. Prof Mittler CBE has a long and distinguished career in the intellectual disabilities, and now currently lives with dementia. Mittler was indeed one of the leaders who helped to establish the UN Convention on Rights for People with Disabilities.
Mittler’s voice is therefore an authentic and learned one. He has much experience in navigating through the maze that is the policy territory of international NGOs. It was therefore pretty predictable therefore that the resolution he worked on for Dementia Alliance International, with Neil Crowther, would be unanimously assumed by the Alzheimer’s Disease International. This means that rights-based advocacy has now been delegated to all the national dementia societies to implement at a local level.
I believe the way forward in ‘activism’ for human rights needs above all to have authenticity. People with dementia need to be leading from the front, taking charge of the campaign. This is a cardinal example of authentic leadership from the front being much more convincing than ’empowerment or engagement’.
This means that an approach based on slick presentations and booklets with relevant case studies, for the benefit for commissioners, will not be effective in embedding a rights-based consciousness for rights, akin to the racial civil rights movement of Martin Luther King or the democratic movement of Mahatma Gandi.
This means that glossy pitches, grants and Powerpoints in town halls will not be the defining factor for embedding a rights-based culture.
Where I think the town halls will be useful will be in building up a ‘guiding coalition’ of people with similar values, such as other groups which are at the forefront of equality and campaigning against discrimination – e.g. groups campaigning for race-related rights, or rights of people with intellectual disabilities.
But again, such a manner of campaigning solely through this formulaic approach would be highly naïve, bordering on disingenuous, here. Human rights are universal and inalienable – this means they can’t be easily siloed off according to which ‘protected characteristic’, e.g. sexual orientation, age, has been breached on any one particular occasion.
Take for example a right to health, or a right to independent living, under the current framework of global policy on sustainable communities. People with dementia often are not only living with dementia: ergo, policy and campaigning should not treat them as if they are only living with dementia, even if this is a useful corporate third sector construct.
We need to get away from the idea, running through English policy like letters in a stick of rock, that dementia is a condition to be gamed for the purposes of writing grants, for example in human rights.
Above all, people with dementia, not anyone else, must be leading the campaign on rights based advocacy.
Martin Luther King wasn’t white.
Mahatma Gandhi wasn’t from Slovenia.
A rights based advocacy approach for dementia in England can be achieved to a limited extent even if fronted by big charity and associated enterprises belatedly jumping on the bandwagon. But I don’t deny they also serve an important function in ‘playing the system’ – but this is not really what campaigning for rights is about. And they also have the big £££££.
Authentic organisations like Dementia Alliance International, going local, are the key.
The conundrum is quite literally this: Only people with dementia can do it, but they can’t do it alone?
The World Health Innovation Summit (WHIS) now moves to the Royal College of Obstetricians and Gynaecologists on the 24th & 25th June 2016. This follows the success of the inaugural WHIS summit that took place in Carlisle, Cumbria in March of this year (23.7 million twitter impressions achieved).
WHIS is an unique and innovative forum in that it supports our health services by bringing communities together to innovate and share knowledge to improve health care for all.
The World Health Innovation Summit aims to bring all members of our communities together to support and help our health services by providing a platform for us to come together as a community to innovate and share knowledge so we all benefit.
As with the first Cumbrian summit, the London event has a range of expert patient innovators, clinical leaders, health commentators, academics and members of the business community speaking and working with members of the community to inspire innovation in healthcare.
I sadly was unable to make it up to Cumbria in the end, due to unforeseen circumstances, but my ‘here’s one I made earlier’ specially prepared talk on innovation and dementia was shown (and received good feedback).
I enjoyed the opening ceremony – though some delegates remarked to me how ‘fit’ the dancers were, maybe indicative of long plane flights to get to the conference venue.
Yesterday, I remarked to the CEO of Alzheimer’s Disease International (ADI), Marc Wortman, as Marc was leaving the hotel, that the Alzheimer’s Disease International conference had ‘interesting dynamics’.
What I actually mean is this.
Speakers from Dementia Alliance International were outstanding. I think Prof Peter Mittler’s talk on how people with dementia must demand access to their rights under the UN Convention for People with Disabilities was a game changer for many. For me, it was the best lecture I’ve ever attended in my lifetime.
I mentioned to some separately that for me Prof Peter Mittler was the equivalent of a premiership footballer, in terms of lecturing ability, when many lesser mortals in comparison look in lower divisions.
I reckon I would’ve actually made it to Dennis Frost’s talk on time especially, not wandered through accidentally half-way through by accident, had Dennis not been advertised as ‘A person with dementia’. This billing on the programme was complete nonsense – as ridiculous as having ‘A person without dementia’ to describe the billing of someone like a policy wonk from WHO.
This was a worthy project which caught my eye.
It was lovely to be recognised by so many at the conference – people whom I had never met before, as well as longstanding close friends of mine. The conference expectedly did have the atmosphere of a family wedding – with people I like and respect there.
I think Jeremy Hughes and George McNamara, senior people at the Alzheimer’s Society, gave excellent presentations. George’s one is particularly relevant to my next book, and contained many many useful avenues for future directions. I think Dementia Friends on principle has good aims, but a real concerted effort must be put now into making meaningful sense of this high cost campaign.
Dementia Alliance International (DAI) is a group essentially run by people with dementia to advocate for people with dementia. But the sheer individual brilliance of the presenters shone through – including Prof Peter Mittler and Prof Mary Radofsky whose contributions were incredibly interesting. There’s no doubt ADI hugely benefited from their presence in the conference, including in the programme list. But I do also feel this is a beginning.
The mood music has changed. DAI has a scarce resource other people want – individual expertise by people with dementia – which many people do not have. It’s clear that the future direction of dementia policy now can be ‘no decision about us without all of us’, and can move from dinosaur lobbying techniques and hospital-dominance to representing the sincere views of people living with dementia.
A day before the first full day, Glenn Rees AM, Chair of ADI, let us know that his Board had approved DAI’s proposal to promote Convention rights, and this would now become their official policy, such that it would be left up to individual national organisations as to how best implement rights-based advocacy. Rights-based approaches, including rights to independent living and right to health, have huge implications for dementia care and support worldwide.
Helga bust a gut to help me with my book signing session.
Thanks very much to Peter Macfarlane from Wisepress for his help for this. Dale Goldhawk, Vice Chair of ADI, even bought a copy!
I had great feedback from my presentation on the awareness of international human rights. Thanks very much to John O’Keefe for chairing this.
Some photos I took are here.
I suppose my favourite ‘times’ of conference was when Agnes Houston made a ‘selfie’ photo of herself for the first time.
And also I think Agnes and Nancy McAdam talking about how they felt really included in Scottish dementia research (#whywedoresearch) on a boat on the Danube was much fun too. A sort of “Alas Houston and McAdam” moment.
Whether or not interventions and initiatives are worthwhile demands long term scrutiny. This is to make sure that initiatives such as ‘Dementia Friends‘, the provision of mass information sessions for the public on some basics about dementia, or accreditation schemes for dementia friendly communities aren’t done, ‘signed off’, and silently disposed of when it’s unclear what the outcomes have been.
It’s always been said that “Dementia Friends”, not ‘training’ but provision of information about dementia, unsuitable for anything higher than tier 1 (in comparison specialist healthcare staff might be trained to tier 3), is a ‘social movement’ “turning communication to action”. In other words, armed with your new knowledge of dementia, you might do something constructive in response.
I have never convinced of a reason for this programme, say, is in improved detection by you of someone slow with their change ahead of you in a shopping queue because of dementia. In fact, getting frustrated at an old person in front of you due to slowness in counting change might be a phenotype of outright ageism, irrespective of the presence of dementia, or simply bad manners. There has been an issue of how the programme might encourage you to behave a certain way towards ‘a person with dementia’. But that is to assume you can identify a person with dementia as if they were wearing a sticker on their forehead with the word “DEMENTIA” in big letters. Many disabilities, including dementia, are indeed invisible. This is akin to not judging a person as ‘normal’ who happens to have an indwelling catheter due to continence issues in multiple sclerosis.
The late Conservative health minister, J. Enoch Powell, famous for various other things too, always warned against the ‘numbers game’. In a break-out session for the Alzheimers Disease International conference yesterday, four speakers from four jurisdictions, including England, Japan, India and Australia, described their perception of what a ‘dementia friendly community’ might be. Kate Swaffer, Chair of Dementia Alliance International, emphasised how such a community should be seen as enabling and inclusive, citing Kiama as an example of good practice.
But other jurisdictions clearly lapsed into “the numbers game” – Japan cited a growing number of ‘dementia caravan volunteers’. the state of Kerala in India offered 100,000 “dementia volunteers”, and Jeremy Hughes, CEO of the Alzheimer’s Society, cited how the Dementia Friends “With a little help from your friends”, slickly produced by professionals, had garnered over a half of million ‘hits’ on YouTube.
Particularly having met Gina at the Alzheimer’s Society conference in London last year, I can say I love the Dementia Friends video as a creative pitch.
But there is a moral imperative to see what these dementia programmes are doing, not least because the substantial cost of a public backed initiative might be at an opportunity cost to other equally meritorious approaches, such as improving rehabilitation services for dementia. Also, there is a fundamental wish, surely, to know whether the initiative has met any of its original ambitions.
In this strategy, it was clearly stated that English dementia policy had to prioritise mitigation against stigma and prejudice towards dementia. Of course, there can be ‘unintended consequences’ of so-called ‘dementia awareness’ – a substantial number believe that queuing in a shopping queue called ‘dementia friendly checkout’ or parking in a ‘dementia friendly car parking space’ in fact markedly exacerbates stigma, and is potentially quite offensive.
Even a badge, rather than encouraging inclusion, can impose an unintended ‘them and us’ distinction.
So the idea of “Dementia Friends”, or any other jurisdictional attempts to emulate this, being a ‘social movement’ is deserving of scrutiny, and should not glibly assumed.
Consider this. Say there are 2 million people who go out each to buy a Mars Bar, a homogeneous product, following an intense publicly funding marketing campaign set up by top quality marketing agencies. Could be said that 2 million purchases of Mars Bars was a social movement of Mars Bar friends – or simply an anticipated benefit of a mass marketing ‘top down’ broad sweep campaign?
The talks from the other jurisdictions indeed touched upon what might have been reasonable outcomes.
Say, for example, in Japan.
And indeed there are a number of possible ways in which you could consider ‘Dementia Friends’ has been of benefit.
These might conceivably include:
reduction of stigma and prejudice in public perceptions
better knowledge of dementia and how dementia impacts on personal lives
uptake of ‘dementia friendly initiatives’ in quality of care, such as ‘dementia friendly hospital wards’
better ‘customer experience’ from high street businesses or corporates
better perceived ‘quality of life’ of people living with dementia and those closest to them
better awareness of possible symptoms of dementia thus promoting more timely diagnosis of dementia
increased confidence of people with dementia living independently (not in isolation) in the community.
It is not fair and appropriate to reduce this into two or three questions, say “how much more confident do you feel about dementia?”. People invariably don’t know the sample size, or any other thing about basic demographics of the sample.
I have noticed a huge drive in Dementia Friends, and in fairness other jurisdictions too, to play ‘the numbers game’. So, at first, you are seeking one million friends – and then you can make the website deliver more friends more easily – so the number increases for little further effort. But this is being accompanied by a marked shift in societal attitudes in dementia? It’s like my mass marketing of Mars Bars analogies.
A social movement for me also implies that the people delivering the information session have some intellectual investment in the process. This is not true of Dementia Friends, which specifically wants Dementia Friends Champions to deliver the same product as advertised – as indeed a Big Mac is the same whether you buy it in Doncaster or Dubai. The organisers of Dementia Friends clearly do not want Mars Bars accidentally turning into Snickers, by the addition of a few peanuts, by a few ‘rogue champions’.
One or two companies delivering a ‘better customer experience’ will be an expected outcome from those companies which have invested money in such a programme. The issue is whether this is replicable through means such as ‘secret shoppers’.
So, all in all, it is of vital importance how you actually measure the efficacy of the social movement. I indeed asked this as a general discussion point in the session chaired by Glenn Rees, the Chair of Alzheimer’s Disease International.
And of course there are a number of ways to tackle this question.
Jeremy Hughes mooted the idea of high quality survey data. I think this would be far superior to relying on a quantitative analysis of pledges from the pledge card. For a start, there is a problem with potentially low response rates for pledge cards. Secondly, whilst easy to codify, the information from the pledge cards are only as good as the quality of the pledges you can pick from in a multiple-choice fashion. For example, in my experience as a Dementia Friends Champion, I have learnt that many people want to ‘join dementia research’, as it gives them some agency and hope about dementia. And yet this is not a stated pledge. It does concern me how slow Dementia Friends has seen to be in working with NIHR in fostering links between the ‘Dementia Friends’ and ‘Join Dementia Research‘ initiatives?
Formal assessments do of course exist of the ‘success’ of social movements. But for the reasons I describe above actually identifying the outcome measures is itself tricky.
Take for example the ‘social value return on investment’ (SROI).
The key assumption of SROI analysis is that there is more to value creation than purely economic value, indeed the value creation process can be thought of as a continuum with purely economic value at one end, through to socio-economic somewhere in the middle, and social value at the other end. Economic value creation is the raison d’etre of most for-profit corporations (i.e. taking a product to service to market that has greater value than the original inputs and processes that were required to generate it), whereas social value is created when ‘resources, inputs, processes or policies are combined to generate improvements in the lives of individuals or society as a whole’.
Social value creation is a huge goal for the third sector in facilitating social inclusion and access for those that may be marginalised). However, unlike economic value, social value is difficult to quantify, varies according to the type of organisation involved in its creation and does not have a common unit of analysis (such as money) that enables it to be easily standardised and compared.
Social Movement Impact Theory (otherwise known as Outcome Theory) is a subcategory of social movement theory, and focuses on assessing the impacts that social movements have on society, as well as what factors might have led to those effects. It is relatively new, and was only introduced in 1975 with William Gamson’s book “The Strategy of Social Protest,” followed by Piven and Cloward’s book “Poor People’s Movements”.
Finding appropriate methods to use for studying the impacts of social movements is problematic in many ways, and is generally a large deterrent to scholars to study in the field. The first problem scholars ran into was defining “success” for social movements; the significance of this is that key stakeholders often have disagreements of what a movement’s goals are, and thus come to different conclusions about whether a movement has “succeeded.” Argos might have different outcomes in mind to Addenbrookes Hospital in Cambridge?
Other issues arise when one attempts to locate a movement’s impact in all arenas. Impacts are most often studied at the political level,and yet it has been proven that they have individual, cultural, institutional, and international effects as well. Is exporting an operational homogenous product the same as propagating a wider social movement?
The psychology of the individuals who participate in movements are normally profoundly affected. But do the 1.5 million ‘Dementia Friends’ feel any sense of connectedness to one another? One suspects not, especially if some have achieved ‘Dementia Friends’ status through a few minutes on a computer terminal in isolation.
Has Dementia Friends shifted quality of care or attitudes in care homes, for example? Has it shifted political attitudes to dementia which have historically been shaped by much political lobbying? One parsimoniously thinks not if the current Government wishes to shift emphasis now to diabetes, and has not even renewed post 2014 the English dementia strategy.
Inevitably within government there continues to be an interest in and application of techniques for program or project evaluation such as cost benefit analysis. And this from an utilitarian perspective makes complete sense – in terms of society’s assessment of ‘getting most bang for your buck’.
Lessons for Dementia Friends can also be usefully learnt from other arenas.
For example, an interesting example of an impact evaluation is provided in a report from a few years ago. This report was entitled “An evaluative framework for social, environmental and economic outcomes from community-based energy efficiency and renewable energy projects for Ashton Hayes, Cheshire March 2012″ , and was published from the nef (the new economics foundation).
Ashton Hayes is a rural village located just outside Chester. Their aim is to become the first carbon neutral village in England, through energy efficiency measures and carbon offsetting; by: ‘…encouraging everyone in their community to think about how their way of life affects their impact on climate change and to help people to understand how simple actions can make a big impact on carbon dioxide emissions to the atmosphere.”
The report helpfully discusses choice of indicators.
It was proposed that all stakeholders are often the best people to identify indicators, but a common mistake is to misinterpret what is meant by ‘measurable’. One should avoid the trap of using inappropriate indicators just because they are readily available; so, if the outcome is important, you will need to find a way to measure it.
Outcomes work also concedes that effect of some outcomes will last longer than others. Some outcomes depend on the activity continuing and some do not. For example, in helping someone to start a business, it is reasonable to expect the business to last for some time after your intervention. The difference between ‘benefits’ and ‘outcomes’ is therefore imperative in this context. The outcomes of a campaign such as ‘Dementia Friends’ will be valid as a snapshot in one particular time.
I feel things will change say when people with dementia are genuinely considered as ‘equal and reciprocal partners’ in any relationship. For example, it should be an automatic given that dementia friendly communities include people living with dementia as paid consultants, not tokenistically ‘involved’.
Kate Swaffer successfully conveyed the sentiments behind this for Australia yesterday, for example.
And I think that is the way things are heading now with the Alzheimer’s Disease International umbrella approach of inclusion and a strong ‘rights based approach’, which hopefully will now filter down to national agencies for implementation.
And ultimately Dementia Friends has to be much more than a successful, easily exportable, marketing campaign – it needs to deliver results on the ground. This is no different for the Alzheimer’s Society and the Government as it is for small social enterprises. The rules of the game must be equally applicable to all, otherwise it’s an “unfair market”.
Dementia enabling communities primarily needs to be for the benefit of people living with dementia and their closest.