disability

Embracing diversity is a crucial step in breaking down stigma for dementia

Shibley Rahman 0 Comments

brain

A curious thing happened when I was taking a taxi back home from the Royal Free Hospital in Hampstead. The taxi driver, somebody I first met several years ago in fact, reminded me that he is a father of two children living with autism. But he presented the information as if he was telling me some catastrophic news.

I have kept in touch with Prof Simon Baron-Cohen’s work, as Director of the Autism Research Centre at Cambridge, not least because Simon was my first ever supervisor there. I did a study with him on the genetics of synaesthesia, a condition where a person might see a colour in his mind’s eye on hearing a word.

Baron-Cohen has advanced the approach that people living with autism, whilst poor at empathy processing, tend to be very good at big picture systemisation planning. People with autism can flourish in highly mathematical and technical disciplines. Einstein, it is remarked, was poor at interactions with other children once and exhibited a symptom called ‘echolalia’ in speech, which can be a symptom of autism.

Dementia is an umbrella term referring to more than a hundred different conditions of the brain which can produce cognitive and behavioural symptoms over time, not just in memory. But imparting the diagnosis of dementia embraces the ‘cliff edge’ nature of dementia – that one moment you might not fit the diagnostic criteria, the other moment you do. Therefore, ‘having dementia’ is an all or nothing phenomenon, and has a sense of finality.

This sense of finality, however, can be very destructive. Kate Swaffer, Chair of Dementia Alliance International, has described the impact of the diagnosis as a disempowering experience. Many people with dementia experience social isolation and loneliness on diagnosis. As a likely result of the stigma of the diagnosis of dementia, dementia has become one of the most feared conditions in adulthood.

But I feel dementia inherently can be thought of using an approach of ‘neurodiversity’. Whilst dementia is not a mental illness, but rather a condition of the brain, we are acknowledging the diverse aspects of mental function already say in ADHD, autism and schizophrenia. Neurodiversity is a phenomenon akin to biodiversity, of species with varying adaptive traits, and the broad range of neurodiverse phenotypes makes as a whole a resilient population.

It is a matter of speculation what dementia might be adaptive for, but, people with ADHD, with distractibility and hyperactivity, might, theoretically, exhibit traits which are adaptive for the hunter-gatherer population.

I feel as another Dementia Awareness Week draws to a close that we are in a much better place with dementia than where we were only a few years ago. People on the whole are no longer ashamed to be living with dementia. As Dr Jennifer Bute said in a BBC programme last week, it’s not the challenge itself of interest of the diagnosis of dementia, but the personal reaction to that challenge.

This has led to a situation where people with dementia are respected for what skills and lifelong experience and wisdom they can bring to the table. This strength based approach is fundamentally different to the one which purely focuses on deficits.

I have no doubt, personally, that an approach which emphasises human rights for people living with long term disabilities is a right one. The UN Convention on Rights for People with Disabilities, whilst not explicitly mentioning dementia, clearly is supposed to embrace conditions such as dementia.

It is right that if a disability in cognitive function is identified it should be rectified through some sort of adaptation or adjustment. That is the purpose of the “PANEL” human rights approach globally, which implements equality non-discrimination and accountability.

But gone are the days when one size fits all, and that’s where the “neurodiversity” approach, celebrating skills and abilities as well as disabilities, comes in. I feel that embracing diversity of all people, in an inclusive way, is necessary and sufficient for breaking down stigma.

It is intuitive that we don’t want a population where we rank people on how fast they get to the same solution, even though this is what academic assessments at school and university appear to do. We should, instead, be encouraging a society where people can legitimately offer different things. This is not a question of ‘all shall have prizes’, but rather adopting an approach where success builds on success.

And if someone’s cognitive profile changes, that person with dementia should have inalienable universal rights to ensure that he or she can live as fulfilling life as possible. It is worth noting that this approach is entirely valid irrespective of whether a cure for dementia is found before 2025.

The force awakens: the case for neurodiversity in living with a dementia

Shibley Rahman 1 Comment

force awakens

The legal considerations of the case of framing a global response as ‘dementia friendly communities’ are not insubstantial.

‘Dementia friendly communities’, as such, were “sold” in England as an army of new ‘dementia friends’, emulating the caravan befriending of Japan, producing pledges in a mass social movement about making life better for people with dementia.

But it turns out it is more than that.

The communities are intended to promote independent living, by being inclusive and accessible. They therefore fall under the remit of equality. But the undercurrent of this is that people living with dementia need to be pulled up to an equal standard, irrespective of their type of cognitive deficits which characterise the dementia.

This is a double-edged sword. Under the ‘social model of disability’, people living with dementia living with cognitive deficits can be equipped with cognitive aids to help them overcome impairments resulting from their cognitive disability.

But this incompletely addresses diversity of thought amongst people diagnosed with dementia. Diversity can be embraced in a positive way by employers with the right mindset. For example, people with memory problems can be re-employed in a job where memory is not a big component or where memory aids enable the job to be done.

The label of ‘dementia’ has been argued as useful in that ‘it unlocks services’. The numerous stories of people who’ve had their diagnosis changed from ‘dementia’ to ‘minimal cognitive impairment’, with disastrous personal reaction, are to some extent testament to this.

But IF it is the case that people have caused this effectively by living with a dementia better some serious scrutiny should be put into whether the medical profession in effect punishing people for living better with a chronic condition.

A  concept, however, has emerged called the ‘affirmation model of disability’, which is described in this academic paper.

“Graby (2015) suggests that John Swain and Sally French’s (2000) ‘affirmation model of disability’ may be useful in taking this project forward, in which ‘disabled individuals assert a positive identity, not only in being disabled, but also being impaired. In affirming a positive identity of being impaired, disabled people are actively repudiating the dominant value of normality’ (Swain and French 2000, 578). The proposition from the neurodiversity movement is that we should reclaim and redefine ‘impairment’, in the same way as the first disability rights activists challenged the meaning of ‘disability’.”

This takes dementia, as a disability, into a new reframed arena of activism.

The same paper,

“It is our hope that building solidarity across experiences of marginalisation and disablement can move us beyond defining how we each individually deviate from the norm. At a time of increased psychiatrisation coupled with aggressive and devastating public spending cuts and government policies, we need to think collectively about how these processes affect us all.”

There are some people who find themselves, however, disabled by their diagnosis. This in policy is not drawn attention to for the correct fear of further exacerbating the stigma and prejudice surrounding dementia.

But dementia finds itself in the same and different place to other disabilities at the same time.

Dementia and other disabilities share the UN sustainable goals, similar to the UN millennium goals.

Sustainable Development Goals_E_Final sizes

But on the hand people living with dementia around the world have experienced distress from austerity, due to the global financial crash of investment markets. In England, this has witnessed the collapse of the Independent Living Fund, while global investment goes into finding a pharmacological cure for dementia.

Being friendly to people around the world, living with dementia, was a well intended aim, for loneliness and social isolation frequently accompany the diagnosis of dementia (for the direct recipients of the diagnosis and carers as well).

However, it is clear that the 47 million people living with dementia have set their sights much higher.

The force awakens.

 

 

My abstract submission for #ADI2016 on dementia, disability and rights

Shibley Rahman 0 Comments

The deadline for abstracts submission is November 16th 2015.

 

Here’s my sole submission for the 31st ADI conference to be held in Budapest.

arrival

Title:

The awareness of fundamental international legal human rights underpinning rights-based advocacy for dementia.

 

Dr Shibley Rahman

 

Background

 

An assumption invariably made is that the general public, including people living with dementia and carers, have a good understanding of the fundamental human rights which underpin policy.

 

To make use of the rights in rights based advocacy, you need to know what these rights are, as they are enforceable. The Mental Health Foundation published in 2015 their much awaited and influential report ‘Dementia, rights and the social model of disability’.

 

Most significantly, the European Convention for Human Rights (ECHR) and the UN Convention for Rights for People with Disabilities (UNCRPD) apply in Europe and the world respectively.

 

Dementia is a disability under international law.

 

Objectives

 

There are relatively few studies of the level of awareness of international rights.

 

This study aimed to remedy that.

 

Methods

 

A ‘Survey Monkey’ survey took place in the first week of November 2015. Invitations to participate were tweeted regularly. There was no restriction geographically on participation.

 

Results

 

The electronic questionnaire contained 11 questions.

 

A maximum of 54, and minimum of 51, responses were elicited for any one question.

 

19% stated that they were disabled.

The vast majority (83%) perceived dementia to be a disability (answering 4 or 5 on a scale of 0 (not at all) to 5 (very much)).

A substantial proportion of respondents did not know whether right to a personal budget (47%) or a right to a medical diagnosis (39%) were rights under ECHR.

A high proportion (81%) recognised the right to privacy and family life as a human right under ECHR.

Of four instruments surveyed (human rights act, mental capacity act, UNCRPD and equality act), the respondents felt that all four instruments had approximately equal ‘importance’.

A sizeable proportion did not know the availability of the two separate rights to accessibility or to justice under the UNCRPD (54%, 54%).

48% did not know that a right to live independently and in the community exists under the UKCRPD.

47% did not know that a right to work and employment exists under the UNCRPD.

Of the five PANEL principles (participation, accountability, non-discrimination and equality, empowerment and legality of rights), non-discrimination and equality was viewed as the most important (34%); and accountability the least (4%).

 

Conclusions

 

The significance, conceding limitations, of these results for international policy will be discussed fully.

 

 

It is the implementation of the law, not the law itself, which is holding back progress

Shibley Rahman 1 Comment

One of the key aspects about the law, both domestically and internationally, is that the law has to be clear and enforceable.

We can see this ‘in action’ where most of the criticisms of the National Minimum Wage have not been the way it’s been drafted, but the way it’s been implemented.

There can, of course, be ‘bad law’. Arguably, the freedom of information should contain a ‘carve out’ where public interest overrides commercial gain say for outsourced NHS providers (where surplus generation might trump safe staffing).

And so it goes on.

A lot of effort has been put into an instrument called the United Nations Convention on Rights of People with Disabilities. Under the guidance to the Equality Act, dementia is clearly a disability. Framing dementia as a disability totally alters the nature of the narrative, where the emphasis shifts from ‘friendliness’ to legal rights of people with dementia.

That rights are universal and inalienable means that it is not legally possible internationally to discriminate against somebody on the grounds of mental capacity, or to breach fundamental human rights in a disproportionate way.

Prof Peter Mittler is a very modest man, quite remarkable given his groundbreaking achievements. He has had a glittering career as a leader in putting disability on the political agenda. One of his recent speeches will give you a flavour of his work.

Mittler in fact habitually resides in Manchester. #DevoManc won’t have escaped your notice. Manchester, in particular the local areas such as Salford, has been at the forefront of living better with dementia, not least due to the massive successful work of Hazel Blears. Blears’ work has been second to none as a parliamentarian in promoting dementia in English policy.

But here Mittler makes a fundamental point which should concern us all. That instruments such as the United Nations Convention on the Rights of People with Disabilities have been known about for some time. In our jurisdiction, the governing party is about to replace the Human Rights Act with another framework, a Bill of Rights. Currently it is unclear whether the UK will remain signatories to the European Convention on Human Rights, but most legal scholars expect us to be not least because of the legal mess in devolution agreements if we left. We are, notwithstanding, signed up to the United Nations Declaration on Human Rights.

The ‘rub’ comes into the enforceability of these rights, and for people at large to take these rights seriously. I personally notice a massive sea-change on the ground, in terms of the embedding of a ‘rights based consciousness’. Clicking on the link below will take you to Prof Peter Mittler’s question at the end of Dr Dennis Gillings’ progress report for the Alzheimer’s Society annual conference (#Dementia2015). Jeremy Hughes, CEO of the Alzheimer’s Society, brings up the correct point about the “rulebook”. Kate Swaffer, as Co-Chair of Dementia Alliance International, a group consisting of and campaigning on behalf of people living with dementia, is praised in Mittler’s comment.

Link to Audioboom recording

Should the workplace a better place to be if you live with early stages of dementia?

Shibley Rahman 0 Comments

First of all, I should like to say at the outset that I don’t particularly like the term ‘early stages of dementia’. There are about a hundred different causes of dementia for a start, and they all progress in persons in an unique way at sometimes vastly different rates.

Helga Rohra, Chair of the European Working Group for Persons with Dementia, instead prefers to refer to the ‘faces’ of dementia. And this indeed is much more in keeping with a ‘person-oriented’ perspective.

Let us say, for the sake of argument, that whatever ‘dementia’ you’re talking about, there is an earlier period when you are developing symptoms of your own dementia and that you happen to be at work.

For the dementia of the Alzheimer type, you could have noticed problems in your learning and short term memory. You might’ve found yourself getting lost in travelling what should’ve been straightforward routes.

Or for posterior cortical atrophy, you happen to have noticed problems with your eyesight, seeing double, or things blurred; oe even falling – and forgetting the odd thing or to.

The reality is that the onset of a dementia can be quite subtle, and, if you’re in work, you may happen to think it’s unlikely your difficulties are due to a dementia. The problem with ringing up a ‘dementia hotline’ in a dementia charity is that you can get taken down a dementia ‘pathway’ of questioning; thus your symptoms are not given consideration for non-dementia causes.

The aim of the ‘dementia friendly communities’ policy worldwide, I feel, has been totally underestimated for its aspiration for people who’ve been given a diagnosis of dementia to ‘live better’.

Whilst I balk at the terms of ‘successful’ and ‘productive’ being used as labels in reference to an individual’s lifestyle, the idea that someone could live independently with appropriate support is entirely consistent with a philosophy of reablement and rehabilitation after diagnosis.

Kate Swaffer’s seminal work in prescribed disengagement (TM) all too clearly defines how things can be made to appear to be going downhill following a clinical diagnosis of dementia. Kate’s work is inspirational as it gives people hope, and gives a clear explanation of what happens. I don’t want to appear hyperbolic, but this work has the same potential to be of equal gravitas as that by great leaders who’ve changed the course of history.

Companies vary hugely in their resource allocations ability. I suspect we will see this as British businesses decide upon whether they wish to stay in Europe. Not oversimplifying the debate, but small and medium enterprises might have a somewhat different attitude to the ‘red tape’ of Europe to the free movement of capital and movement opportunities presented for large multinational corporates.

There is no reason to suggest that workplace policies will differ.

The World Health Organization has previously explained the background to the importance of its work on non-communicable diseases for the workplace.

“The European Network for Workplace Health Promotion has similarly issued a number of statements in support of workplace health promotion, including the Luxembourg Declaration on Workplace Health Promotion in the European Union, the Lisbon Statement on Workplace Health in Small and Medium Sized Enterprises and the Barcelona Declaration on Developing Good Workplace Health Practice in Europe.”

In response to the global burden imposed by noncommunicable diseases, WHO developed the Global Strategy on Diet, Physical Activity and Health (DPAS), which was adopted by the 57th World Health Assembly in May 2004. The goal of DPAS is to promote health by guiding the development of an enabling environment for sustainable actions at individual, community, national and global levels which, when taken together, will lead to reduced disease and death rates related to unhealthy diet and physical inactivity.”

As Kate Swaffer pointed out in a workshop for the Alzheimer’s Disease International conference in Western Australia in April 2015, people developing symptoms of dementia should be given the opportunity of whether they wish to stay in employment. If the person then does wish to do so, then there’s no reason to consider dementia as anything other than a disability (if indeed given a diagnosis of dementia); and this should bring with it legal rights against discrimination in theory. The same rights, in theory, are supposed to protect against unfair dismissal, although what happens in practice (especially in relation to when the diagnosis becomes ‘official’) is a complicated area.

The timing of this diagnosis is therefore all crucial. Irrespective of local difficulties in human rights legislation in England, the Universal Declaration of Human Rights applies all around the world to enforce universal inalienable rights. It’s a matter of semantics whether dementia is a disability as far as the United Nations Convention of Rights for People with Disabilities, particularly in relation to transposition to local law, is concerned – but many feels dementia does ‘fit'; and certainly does so in relation to the guidance on the Equality Act (2010).

So people living with disabilities, whether or not they are in the workplace, should be protected by human rights law. And we saw hint of this need for corporates to sign up to this from guidance for corporates on corporate social responsibility and human rights (from guidance issued in 2012).

Google is a multinational corporate, with huge clout.

That is why their lead is particularly noteworthy. They have recently announced the following:

“One billion people worldwide live with a physical or developmental disability. And for those in developing nations, many of these disabilities dictate a life of social and economic marginalization. But Google’s doing something about it. The company announced Tuesday that it is funding a $20 million grant for its latest Impact Challenge, one aimed at making the world more accessible for those with disabilities.”

“Specifically, the new Google Impact: Disabilities program seeks to “build awareness, identify solutions and help create universal access for people with disabilities.” To that end Google is soliciting people on both sides of the issue — people (or those whose family are) living with a disability as well as innovators, inventors and tinkerers. The Google’s has already teamed up with non-profit startups like Mission Arm, E-Nable and World Wide Hearing, and now it’s looking to fund more solutions to the tune of $20 million.”

The confluence of rights-based approaches, Big Money and dementia friendly communities is a highly significant one. It is vital that stakeholder groups such as the Dementia Alliance International, as the only international group run by people with dementia advocating for people with dementia, are amongst the first in line to make a pitch.

 

Rights-based approaches in dementia. What are they good for?

Shibley Rahman 0 Comments

I will be responding to a Mental Health Foundation report on disability and dementia on Thursday.

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about. I was, to be honest, a bit afraid whether it was “the next big thing” in dementia policy, like “dementia friendly communities”. My concern was that it is a bandwagon, which, like the “no decision about me without me”, is prone to becoming a slogan without people looking behind the sentiment. But on closer examination, I feel “rights based approaches”, which I will call “RBA” so it sounds less threatening, has much to offer.

For a start, it has a lot to offer people living with dementia themselves – this includes all individuals who’ve received a diagnosis of dementia, and living at all ‘stages’ of their dementia. I feel the danger with “dementia friendly communities”, apart from the basic problems of how you define ‘friendly’ for a start (is it the same as capable? inclusive? accessible?) is that it offers more to people other than people with dementia than the people with dementia themselves. However, this policy was clearly meant to be for the benefit of the person living with dementia, such as more ‘friendly’ design, transport or housing.

But human rights, such as right to be free from degrading treatment, apply to everyone. They are inalienable; they apply to everyone. There are problems in thinking that all human rights are legal ones. It’s often cited that the offense caused by Apartheid is a moral one and pre-existed legislation. The general issue is that rights do not need to be in law to be meaningful (but it certainly helps.) The fact that they are inalienable is an extremely powerful concept – that they do not erode as the dementia progresses. The way dementia is often framed in the media and even by professionals is an insidious “dehumanising” process.

And the United Nations are deadly serious about the implementation of human rights, to the extent it has produced a Convention on the Rights of People with Disabilities. It’s also given guidance on how corporates should behave responsibly to observe human rights. The Convention on the Rights of People with Disabilities, I feel, is valuable as it adds serious teeth to what might have seemed peripheral issues, such as the democratic representation of people with disabilities.

Its ethos about everyone being equal in front of the law has serious implications for our own Mental Capacity Act. And I don’t think it is a bad thing that we are forced to think about our understanding of capacity – and what ‘happens’ when capacity is ‘lost’ in a seemingly all or nothing matter. A law is only as useful as its enforceability, but a sense of ‘rights conciousness’ gives people with dementia a sense of entitlement to standards. Of course, it is counterproductive if people use this law to be compliant to prevent complaints, rather than use this law to acknowledge certain people have legitimate legal expectations.

I feel, particularly, that a RBA offers a mechanism to campaign as a social movement. People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’. People with dementia can campaign for minimum standards in things which affect their health through constructs such as the Convention for People with Disabilities, such as in housing, education or democracy; in the same away as activism on public health brought about basic changes in sanitation in global medicine.

This should be of course a focus for public health anyway, but it is all too easy for Big Charity and governments to collude in a narrative on prevention and cure, squeezing out living well. But this prevention script is not innocuous either. A healthy lifestyle does not necessarily mean another dependency on cholesterol or blood pressure lowering drugs.

And the “pre-dementia” notion, often advocated for by Big Charity, potentially can make patients out of us all. The effect is we are all living in fear, some more than others, and ‘it’s our fault’ if we don’t do something to stop getting dementia (the “personal responsibility” narrative). A disability requires a long-lasting substantial impairment, and access to benefits on the basis of disability are de-incentivised by any simultaneous wish to ‘live well’. We get into slippery territory if we can recognise all people with ‘genetic handicaps’ over meticulous examination of their DNA through ‘Big Data’ innovations. Some people find the label ‘disability’ empowering, some disempowering, looking at the literature from all long term conditions. I personally find recognition of my physical disability ’empowering’, but each to their own?

And living better with dementia is important as it supports a move away from deficits and illness. Health is not just about an absence of illness, and people on receiving a diagnosis of dementia are entitled to lead lives in recovery akin to receipt of a diagnosis of schizophrenia. If a social movement such as ‘dementia activism’ gains traction, it’s perfectly possible this will provide further leverage, such as not seeing people with later stages of dementia being parked in residential homes. For decades, it was too easy for many individuals to be given inappropriate antipsychotic medications institutionalised like some sort of police state.

I think language is critical – and that’s why this from the Alzheimer’s Society back in 2009 did not impress me much.

PR

Victimhood is sometimes unwittingly exacerbated by Big Charity – which is why we all need to be vigilant. A RBA may help to reset the compass on this one.

In summary, I feel RBA are complementary to dementia friendly communities, and will make the weather. I think they are less reliant on codification by governments or governmental bodies, and can be ‘enforced’ in a legalistic manner, but the crucial strength in them is their ability to command a social movement for better dementia care and respect for people with dementia and carers.

It is now clear people with dementia and caregivers need to set the #globaldementia agenda

Shibley Rahman 0 Comments

“Urgent” and “call for action” have become the potent memes in messaging radical transformative change. Hence the title of the statement about the #globaldementia event, held earlier this week in Geneva, came as no surprise to me.  What did genuinely come as a surprise was how accommodating both WHO and the Alzheimer’s Disease International were to the views of people with dementia there.

This was the public image; rather reminiscent of GCHQ, an omniscient and omnipotent body talking to each other. And indeed I found the communication between officials between different countries useful, even some still clung onto the deeply stigmatising language such as ‘horrific’ and ‘devastating’.

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The word though ‘urgent’ does merit some scrutiny. It implies that time is running out – and indeed Hillary Doxford, the representative of the World Dementia Council living well with dementia, explained that “time is the currency of people living with dementia”. Hillary herself explained how she was only given a finite length of time to live, according to her initial disclosure diagnosis. And this is not the first time that I have heard this issue being totally mishandled. The actual truth is that it can be very difficult to predict how long a person will live, and actually imparting a diagnosis of dementia should not bring that person any closer to their time of death. In fact, ideally, we want to be able to get to the stage where most people, after a diagnosis of dementia, are able to ‘live better with dementia'; and indeed initial evidence appears to support the notion that active social networking or even diet may have a beneficial effect. But Kate Swaffer brought out a point which I do feel is urgent; that high quality research into care and living better with dementia needs to have parity as that sort of research which ultimately yield a ‘cure’. The ‘experts’ this week had enormous difficulty in identifying what a cure for dementia might look like, and this is not surprising given that  there are about a hundred different types of dementia.

We didn’t hear much from caregivers themselves at the conference, which is not unexpected given what a full time job caregiving is. The “call for action” this time around. “Call for action” has become the call for arms for charities campaigning on dementia, but it is becoming increasingly clear that self-generating social movements campaigning for a change in how dementia is perceived by others is gathering considerably more momentum than the ‘dementia friendly communities’ construct. ‘Dementia friendly communities’ should not be underestimated for reframing aspects of communities around the needs of people in society with dementia to lead fulfilling independent lives, but it remains dangerously close to a “does he take sugar?” modus operandi. Even the “no decision about us without us” mantra assumes division of “them” against “us” – which led me to do my own personal #globaldementia pledge this time around.

pledge

I am looking forward to participating in an event hosted by the Mental Health Foundation on 26 March 2015 entitled, “Rights, dementia and the social model of disability: a new direction for policy and practice?” I must admit that I was expecting to be somewhat at odds with this report, but I found it spot on.  I’d therefore like to extend my personal thanks to Gráinne McGettrick, members of the project Advisory Group, 26 March speakers and participants, especially people living with dementia.

The document is very much in keeping with chapter 13 of my book “Living better with dementia: Good practice and innovation for the future”, with three forewords having been written by Kate Swaffer, Co-Chair of the Dementia Alliance International, a ‘peak body’ of people living with dementia, Beth Britton, celebrated blogger and campaigner, and Chris Roberts, living well with dementia.  The narrative of my book is ambitious; it basically puts people living with dementia, with an aspiration to live better, ‘in the driving seat’, and argues for a rôle for an individual who has received a diagnosis, a member of family or friend, and professional to take part in an extended network to help to deliver a personalised care plan. In chapter 13, I found myself confronting the rather individualistic approach of human rights, being reconciled with the ‘dementia friendly communities’ policy currently in vogue worldwide.

Living better with dementia - shortened version

For me the Mental Health Foundation report throws up a number of critical policy issues which will need to be confronted sooner or later. I suggest sooner; perhaps even I suggest ‘urgently’ with a similar ‘call to action’?

The issues for me are as follows.

1. Definition of dementia under English law

The guidance for the Equality Act (2010) helpfully includes dementia as  a disability. The case law, I feel, is more helpful than the statute law.

For the law, the link between ‘disability’ and ‘impairment’ is a key one Section 6(1) Equality Act [2010] states that a person (P) has a disability if P has a physical or mental impairment, and the impairment has a substantial and long term effect on P’s ability to carry out day to day activities.

In essence, the claimant must therefore show that there is an impairmen, the impairment has an adverse effect, the adverse effect is substantial, and the effect is long term.

Not all of the points have to be proved, and it has generally been accepted that claimants living with cancer, multiple sclerosis, or HIV/AIDS will have no problem in fulfilling this statutory definition.  The legal issue is how a medical condition affects a person ((e.g. mobility, manual dexterity, co-ordination, continence, ability to lift/carry, speech, hearing, eyesight, memory, ability to learn, perception of risk or physical danger).

The medical model requires the clear identification of deficits; whereas the social model, one which people themselves with dementia tend to prefer, looks at what people can do rather than what they cannot do. Arguably, attending a medical ‘check up’ which emphasises what you cannot do now compared to before, or brain shrinkage on your MRI scan, can be very demoralising and not particularly constructive for a person living his or her life.

How the impairment is caused is irrelevant in English law, and we know this from  Power v Panasonic UK Ltd [2003] IRLR 151, a case decided under the Disability Discrimination Act. There are possibly as many as hundred different types of dementia, and they all present with different ways, although it is certain that no two people living with dementia present the same. This calls into sharp focus of questioning what the point of the label is – such as the diagnostic category of dementia. In ‘diffuse lewy body type’ of dementia, certain medications are best avoided. Whereas dementia of the Alzheimer type typically is best characterised by early difficulties in learning and memory and spatial navigation, semantic dementia is best characterised by loss of specific types of knowledge, posterior cortical atrophy is best described as loss of higher visual processing early on, and behavioural variant frontotemporal dementia is most often characterised by an insidious change in personality and behaviour in the absence of cognitive deficits early on observed by others.

2. The enforceability of the law (access to justice)

Having an emphasis on the law is great to bolster that this a serious issue, rather than the more namby pamby softly softly approach of ‘dementia friendliness’. However, the usual criticisms of using a legal approach in my opinion apply; adherence to the law without a genuine change in cultural attitudes, a possible ‘race to the bottom’ with more enthusiasm about compliance than outcomes-focused regulation, or a sheer lack of enforceability due to drastic cuts in legal aid provision. In England, there has been quite savage cuts here consequent upon the Legal Aid and Sentencing and Punishment of Offenders Act (2012), which some rightly view as a demolition of the ‘welfare state’. One could and should argue, perhaps, that access to justice should be a necessary and critical part of a dementia friendly community?

3. The lack of cultural diversity considerations

The rights based approach is technically worthy of the same criticism as ‘dementia friendly communities’ in that in the drive to universal concrete individual rights there is little consideration of the cultural background of the person living with dementia (e.g. BAME communities, LBGT communities). But human rights by their nature are supposed to have a non-negotiable, inalienable fair about them, a universality which can be relied upon, so this may in fact be an advantage rather than a criticism. However, it could be  argued that ‘dementia friendly communities’ offers a much more culturally-sensitive tool than rights-based approaches (see for example Dementia Friendly Gurudwaras).

4. Are rights and capacity connected?

The recent R v Cheshire/Chester case has brought to the fore the precise inalienability of human rights, which cover a mass of issues such as liberty, even if a person is legally without capacity. There is a broad consensus that a human person should not lose his or her human rights if he or she loses capacity, but this prerequisites a robust definition of capacity, which many feel we have simply not arrived in the current English jurisdiction (nor a consensus on the best way to implement the Mental Capacity Act (2005)).

5. Institutional vs ‘successful living’

Across the last few decades there has been a general move away of institutionalising people with mental health conditions including learning difficulties and dementia. There is nonetheless a tension which does interface with the ‘rights based’ approach and disability activism, in that people who are not able to live alone should not be deemed as ‘failures’ of policy.

6. Does the United Nations Convention of Rights for People with Disabilities inform on what might constitute a dementia friendly community? (e.g. enjoyment of sport)

The legal definitions under the United Nations Convention for Persons with Disabilities, as pertaining to dementia, are indeed interesting, as they refer to specific things such as enjoyment of sport. Of course, prescribing such a list lays the Convention to the attack of  “expressio unius est exclusio alterius“,  that only things specified n the list are worthy of consideration.

But they do potentially offer the basis of minimum legal standards for a dementia friendly community which could even be legally enforceable (in theory), such as article 30 (participation in cultural life, recreation, leisure and sport). Actually, I am quite interested in article 29 (participation in political and public life), which emphasises that the same democratic principles should apply for people with dementia. There was in fact a clear violation here, as the current nominee for the World Dementia Council, living well with dementia, was not democratically elected.

7. Implications for needs assessment under the Care Act (2014) in the English jurisdiction

The phenomenon that some people with dementia “have good days” and “have bad days” is well known not least to people with dementia and caregivers themselves. In certain types of dementia, such as diffuse Lewy body dementia, it is not unusual for cognitive performance to be ‘fluctuating’. The traditional description of ‘multi-infarct dementia’ (or ‘post stroke dementia’) has been of a ‘stepwise’ progression, although many have queried the correctness of this term.

Whatever the precise details, it is generally accepted that the needs of a person with dementia will change, not least because dementia, whatever the precise nosological definition, is considered to be progressive (unless the symptoms of dementia present from causes other than dementia or the dementia is ‘reversible’ e.g. plasma exchange for paraneoplastic dementia). This poses a critical question as to how rights are related, if at all, to the fluctuating symptoms of dementia?  This logistically poses an issue of how often needs should be re-asssessed and how such ‘results’ are interpreted by professionals. Ideally, the benefits system linked to the Care Act (2014) regulations needs to be responsive to the care needs of any individual with dementia at any particular place and at any particular time. This certainly warrants careful scrutiny.

 8. Shift from a medicalisation to a social model (rôle models, development of a cure, training of workforce)

This is of course is THE big one in England, requiring a huge radical transformative change in England, combining health and care.

This requires breaking down organisational silos, different funding schemes, different power structures, different workforce requirements, different cultural attitudes, the breaking down of barriers of information transfer, a more collaborative or distributive style of leadership, better coordination between different forms of care and health provision, the double declutching from a fragmented illness repair service to a national health service. The change required is enormous.

I have always believed that political leaders or CEOs of big charities do not hold the key to bringing out ‘urgent change’. And here you really have to define what change one is trying to bring about. Even the mantra “care for today, cure for tomorrow” has brought about division, as people have asked, “why not care for tomorrow as well?” Kate Swaffer, Co-Chair of the Dementia Alliance International, has warned that there is no imminent cure in the pipeline, so there is a genuine issue of expectation management. How are even the most altruistic of the 45 million people living globally with dementia supposed to get excited about a cure or Big Data advances in dementia for 2025?

Very difficult, if you’re being honest.

I believe rôle models, of people living well with dementia, such as Ken Howard, Kate Swaffer, Chris Roberts, Mick  Carmody or Helga Rohra, hold the key here. They are THE authentic voice – to tell the organisers of the health and care services what is urgently needed from them, e.g. not 15 minute disclosures of diagnoses in the absence of loved ones with reference to an information pack in a busy clinic.

9. The power of the media

For all the efforts of destigmatising dementia, it is helpful if you have leaders in WHO or political Ministers of State calling “dementia” incessantly “horrific” and “devestating”. Nobody of course is asking for the negative aspects to be airbrushed out, but all most people want is some form of balance rather than ‘shock doctrine’ tactics. The stronghold of the media is not inconsiderable, especially if people with dementia are themselves to give birth themselves to a social movement, but here the tools of the new media, such as Facebook or Twitter, might help. One suspects that principal media outlets should be given much more stringent guidance on what is acceptable, and what isn’t.

10. Effective rehabilitation

Kate Swaffer herself noticed that ‘rehabilitation’ was noticeably absent from many if not all discussions. Why? Kate raised the point that if she had been given guidance on how to adjust to her diagnosis, on what she could do rather than what she could not do, she might have been able to carry on paid employment. Many people with dementia do not wish to take their employers to court over unfair dismissal, as that is a sure fire way to bring about a break down in employer-employee relations. That is an example where implementation of legal rights might bring about more damage than good. For many having received a diagnosis of dementia, effective engagement with the society and community is more beneficial than a lump sum payment from the employer, as we keep on being told in policy (because it is true) that marked loneliness often accompanies the diagnosis of dementia in all jurisdictions.

11. What is the end point? Equality versus diversity.

There is a sense that we do not actually know what the end point is for anything. We don’t even know what the end point for the cure for 2015 is, as we don’t have a coherent explanation of that despite numerous requests. Kate Swaffer suggested that a cure which gave somebody a protracted slow death might not be ideal either.  And the “dementia friendly communities” policy is fixated on equality, not diversity, which means that even if both rights-based approaches and dementia friendly communities were implemented to the hilt across all jurisdictions to the hilt the policies would clearly not satisfy everybody because of individual differences in diagnosis and service provision.

12. Are the services in place which do not inadvertently encourage division? 

Even the most professional professional this week confused dementia with a condition of ‘old age’. I have had this dispute with Kate Swaffer. In fact, we both agree. Many old people live with dementia. As you get older, your risk of getting dementia increases.  But there are many younger people with dementia too. We haven’t reached a point yet where points of service provision are not ageist, and therefore immune from judicial review. How far do you take rights? I’ve asked Chris Roberts whether he feels that old people’s homes are appropriate for younger people with dementia, and Chris reliably tells me that he has not intrinsic difficulty into going into a home with older people as he loves meeting people (also telling me that the difference between 45 and 55 should not be given greater attention than the difference between 65 and 75).

13. Is involvement of charity a good thing? (Problems to do with corporate and regulatory capture; does involvement of “charity” inadvertently reinforce a ‘victimhood’ nature of living with dementia?)

The system is clearly geared up to reinforce the medical model; you can see the way possible cures for dementia are promoted by certain corporate-like charities; and this is reinforced by the regulator such as NICE setting rigid guidelines for such interventions (such as cholinesterase inhibitors) with less attention to say the potential of an iPod to improve the quality of life of a person with dementia through ‘musical therapy’. The cost of distributing iPods may be more ‘cost effective’ value-wise for improving quality of life of people living with dementia than medications which do not, for most, slow down progression nor have a beneficial effect of symptoms further to a very limited time window for some? Surely this is the sort of discussion we need to be having, as well as the ones we saw at #globaldementia? The time may have to come where large charities are recognised more as being as the problem than the solution, particularly if they appear to dismiss calls for a national network of clinical nursing specialists in dementia. 

My somewhat reluctant conclusion is that rights-based approaches put people with dementias on a much firmer footing, and this cannot be a bad thing. However, my concern with this approach is that whilst right-based approaches appear fine in theory how they are actually implemented in real life which provide the acid test.

The national minimum wage sounds great, but…

Furthermore, one wonders whether the notion of living better with dementia rests easily with the concept of ‘victimhood’ which can inadvertently encroach on work.

Take for example, this recent section from an article from Norman McNamara’s Kickstarter to make a documentary about him and his initiatives:

“He added: “The Purple Angel Dementia Awareness Campaign has now become global and is being embraced by all four corners of the world.

“People who matter have come together for one cause – to help those less fortunate than themselves.”

It is unclear to what extent certain people with dementia are happy with this ‘victim status’ portrayed by others?