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.