Dementia

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.

 

 

I’d be very surprised if the NHS’ “new models of care” were built to last

Shibley Rahman 0 Comments

I’d be very surprised if anyone expects the “new models of care” from NHS England, regularly showcased at conferences, will be the final answer on the organisation of the NHS and social care. Changes in system organisation for dementia are very unsettling, particularly when they happen so regularly.

But the contrast between the “global response” to dementia and the global response to “climate” couldn’t be starker. The former was spearheaded as a response by Big Pharma, undercover of the G7, to ‘find a cure by 2025′, where clearly the main beneficiaries were corporate stakeholders, not the current 47 million people living around the world with dementia.

The film “Still Alice” is testament to this. It pictures one end of dementia services, the medicalisation of dementia, where the patient is privy to a sophisticated expensive brain scan and a specific genetic diagnosis and management plan. Whether or not it is ‘Hollywood’, or indeed the conflation of Alzheimer’s disease and dementia (“Alzheimerisation”), it is far cry to how dementia is actually identified and acted upon in low income in countries. But climate change affects everyone – including China, which for the purposes of the climate discussion, is a “developing country”, not a powerful growing economy. I say the response to dementia could have been one which also benefits everyone – there are after all many people living with dementia around the world.

But China also happens to make iPads, whatever your particular views of globalisation. In the long view of any corporate producing products, the strategy factors in the fact that a product will be regularly updated every years to maintain growth in the industry. I dare say when Apple was envisaging the iPad, it may already have known about the iPad2, but not necessarily about the iPad Pro.

I’d be very surprised if the NHS and social care, and all who benefit from advising it, view the “new models of care” as their final answer. It doesn’t as such matter, as is usual in higher NHS management culture, if they screw up.

“Planned obsolescence” or “built-in obsolescence” in industrial design is a policy of planning or designing a product with an artificially limited useful life, so it will become obsolete, that is, unfashionable or no longer functional after a certain period of time. The rationale behind the strategy is to generate long-term sales volume by reducing the time between repeat purchases.

In the United States, automotive design had appeared to reach a turning point in 1924 when the American national automobile market began reaching saturation. According to the ‘Ansoff curve’, known to every keen student of management, diversification is the only option.

To maintain unit sales, General Motors head Alfred P. Sloan Jr. suggested annual model-year design changes to convince car owners that they needed to buy a new replacement each year, an idea borrowed from the bicycle industry, though the concept is often misattributed to Sloan.

And this principle still continues up until today.

Tech repair and upgrade website “iFixit” has claimed that the Apple Watch won’t be a long term option for those hoping to continually upgrade their device. Upon the release of the Apple Watch, “iFixit” immediately got down to the business of (iBuffs look away now) tearing the brand new product open and evaluating it from the inside. According to “iFixIt”, The s1SiP is custom-designed Apple technology that integrates a number of subsystems like the chip into one package. It is, in fact, encased in resin to increase its durability.

apple watches

It is not uncommon now for gadgets to have every component soldered onto a massive circuit board so that individual replacements are impossible.

At the beginning of April 2015, the National Institute for Health Research published the final version of the report, Insights from the clinical assurance of reconfiguration in the NHS, written by The King’s Fund. They found that those considering reconfiguration often have a limited evidence base to draw on and that few reconfigurations achieved the financial savings they promised. And I dare say many of them fail to achieve their exact clinical outcomes.

The tragedy is, of course, that we have been here very many times before.

The Conservatives won the election in June 1970, and Sir Keith Joseph replaced Richard Crossman. Joseph produced his own proposals for NHS reorganisation that were embodied in a White Paper published in August 1972.

As in Crossman’s plan, local health authority areas were to be matched with local government boundaries. Hospitals, nursing services, health centres and general practitioners were brought under the control of the new local authorities. These measures were incorporated in the National Health Service Reorganisation Act of July 1973.

NHS England has religiously avoided use of the term “pilot” in relation to its new models of care programme, preferring vanguard, “early adopters” and “first cohort”. With bidders having been told they must have “a credible plan to move at serious pace to make rapid change in 2015”, the intent seems clear. But will these pilots which are not pilots work?

According to the “The NHS – a manager’s tale” published by the Nuffield Hospitals Provincial Trust,

“Barbara Castle took over from Keith Joseph as Secretary of State for Social Services with David Owen as her number two. They decided it was too late to stop or radically change the re-organisation due on 1st April but they displayed little enthusiasm for it. Thus the changes were launched with luke-warm political support.”

And even then the influence of McKinsey’s had been felt:

“A large multi-disciplinary steering group had been created and chaired by the then Permanent Secretary, Sir Philip Rogers. The group was supported in its work by the Management Consultants McKinsey and Co Incorporated and the Health Services Organisational Research Unit of Brunel University led by Professor Jaques. Their report, Management Arrangements for the Re-organised NHS, which was published in 1972, came to be known as The Grey Book (the colour of its cover).”

Fast forward 30 years, and, in 2012, it was reported that 

“A Mail on Sunday investigation, based on hundreds of official documents disclosed under the Freedom of Information Act, has revealed the full extent of McKinsey’s myriad links to the controversial reforms.

Many of the Bill’s proposals were drawn up by McKinsey and included in the legislation wholesale.”

I am superficially interested in the ‘new models of care’ as they apply to my speciality, dementia, but I would extremely surprised if they were built to last. Therein lies the exhaustion of the ‘planned obsolescence’ of policy in dementia.

People with dementia should not be the audience, but the main actors

Shibley Rahman 1 Comment

I must admit that I always feel like throwing something at my computer screen when I see a steering group for people with dementia run by people without dementia but with big financial grants.

For some reason, I used to conceptualise the way some people had approached ‘dementia friendly communities’ like a zoo. Event organisers serially wheeled out a star ‘person with dementia’ like a spectacle, akin to the ‘push me pull you’ of Rex Harrison.

The boot is on the other foot now.

It’s like this.

CVXdmU1UAAA1sTZ

The thing is communities which are ‘dementia friendly’ should in fact be suitable for all. This means inclusive to all. This means accessible to all.

A major problem with the term ‘dementia friendly’ is that it implies that you can identify immediately  person with dementia by the way he or she is behaving in the community. No person with dementia has a sticky adhesive label on his or his forehead saying ‘I have dementia’.

Dementia is an invisible disability. It’s a disability where we can identify the exact problem, say problems with hearing in a noisy room, or problems with memory, or problems reading. Like all disabilities, it requires a sensible approach such as identifying if the problem causes an impairment and subsequent handicap.

11667251_1101011503261646_3831631535054684929_n

I’ve seen this referred to as ‘cognitive ramps’ – but any level of analogy might be suitable such as ‘cognitive wheelchairs’. The basic point is that you’d expect employers to build wheelchair ramps (or simple) for young employees with a physical disability to allow them to get into the building to do their work in the first place; such an attitude is needed for people with young onset dementia too (this is dementia below the age of 65).

The other big way in which the term ‘dementia friendly communities’ is wrong is that it implies a very static process, which ironically is not how the UK accreditation scheme works at all. The UK standards (really specifications) necessitate sustainability, i.e. that the community will be friendly in the future, and is always ‘learning to be friendly’.

This gets to the heart of a tension which exists in policy. That you often hear from many diverse people with dementia that they’re living for the present, and yet there’s one dimension of policy that aspires for a better world for tomorrow – whether this is in the form of dementia friendly communities, or better treatments for the future (disease modifiers or symptomatic treatments).

The policy which crystallises the imperative for the world to build ‘dementia friendly communities’ for the future actually comes under the WHO sustainable development goals. They’re pictured here.

Sustainable Development Goals_E_Final sizes

 

It’s clear that people living with dementia need access to the UN Convention on Rights of People with Disabilities (UNCRPD), as all the preamble and articles of that convention apply directly to people with dementia.

Both these instruments are very closely linked to the implementation of a rights-based approach for dementia. Human rights lie at the core of this phase of supporting people with dementia to live in the community after their diagnosis. Even if the UK takes the step of repealing its existing human rights legislation, implementing the European Convention on Human Rights, the global policy tools remain.

The question is of course how people with dementia can best advocate for them. The safest way to make this manageable is to make sure human rights remains in the international conversation, as demonstrated, for example, by Marc Wortmann in the PAHO Plan of Action summit in Washington.

Human rights became serious business when mentioned by Kate Swaffer, Chair of Dementia Alliance International, at the WHO Summit in Geneva last year.

But we do also need local leads which integrate dementia and disability policy drivers together. This, for example, might be facilitated by organisations such as Alzheimer’s Europe participating in the work of the European Disability Forum to make sure that the achievable ‘UN sustainable goals’ and UNCRPD are indeed implemented as ratified.  Yesterday, the EPSCO Council adopting the Luxembourg EU Presidency conclusions most helpfully took Europe down the route of rights-based advocacy, as faithfully reported by Alzheimer Europe.

But I feel that we shouldn’t lose sight of the main issue: people with dementia are no longer in the audience. They’re the main actors.

Working groups must be a source of collective action not funding dependency

Shibley Rahman 0 Comments

The Scottish Working Group for people with dementia and the European Working Group for people with dementia have been hugely successful, however you choose to measure success. They have witnessed remarkable individual advocates for dementia in people living with dementia, for example Agnes Houston from Scotland and Helga Rohra from Germany.

It is essential that policy in dementia is driven organically by people living with dementia and those closest with them, rather than people who are perceived somehow to have a sense of entitlement in a body corporate sense. That is not to say that the influence of the body corporate is a bad one: it is an important mechanism for financial sustainability and confidence for the future.

It would however be churlish to deny that bodies corporate can become focused on their brand. The brand identity is a major source of social and financial capital, known as brand value, and leverages the competitive advantage of the body corporate. Clearly bodies which have higher revenues are able to allocate resources into branding, often including sophisticated marketing and legal protection, in a way that smaller minions can’t manage.

With well known brands comes responsibility. The voluntary sector is extremely important in providing capacity for the service provision in dementia in England and Wales, but it is too easy for entities in the non-statutory sector to abuse a dominant position.

Working groups with sufficient momentum can have a beneficial impact on policy, and very often co-production is necessary to give policy legitimacy and authority. There is no doubt at all that dementia advisers and dementia support workers have a critical rôle to play in service provision, although we do need to build on the current published validations of these roles. There is very little commentary on the efficacy of these roles in the peer-reviewed academic literature, which must cause grave concern. On the other hand, the literature on the value of clinical nursing specialists is quite formidable. And yet corporate power and their ambassadors can sway the debate in a direction not in the best interests of persons with dementia.

But working groups if too large can deter against diversity. They are especially dangerous if their primary purpose, especially if argued through the prism of the business sense, is primarily to promote corporate brands, encouraging a sense of funding dependency. This can filter down to a dependency on an individual level where advocates in dementia ‘get gigs’ through their membership of an advocacy organisation.

An unintended consequence also is if national working groups containing ‘revolving door’ members of people who get themselves onto the same committees with relative ease, facilitated with funding bodies who are happy to feather their own nests, at the expense of other ‘entrants’. If the pool for these people is limited, then international initiatives can suffer. This, in my view, would be hugely damaging with important international policy streams, such as in dementia inclusive communities or the UN Convention on Rights for People with Disability.

I, overall, feel the ‘call to action’, while overused, is a good way for people not just to complain, but to ‘do something’ about the situation. Complaining and not offering an alternative can be a particular approach of people from a certain political inclination. And not all funding is bad: funding does not necessarily set up an evil axis of influence, and it is important for clear boundaries to be maintained even in strategic alliances to avoid inadvertent exploitation from either party.

I also do believe that the whole is greater than the sum of the individual parts. One of the weakest parts of the empowerment approach has been a lack of sustainability, at worst encouraging a culture of dependency. It would be a disaster, in my view, if this leaked into the formation of national working groups in dementia.

 

In the “war against dementia”, where are our “boots on the ground”?

Shibley Rahman 0 Comments

army_boots

In my quest for knowledge about what is working and what isn’t working in dementia service provision, I often ask Agnes Houston MBE for advice.

“Scottish allied health professionals are brilliant!”, she once said.

Agnes, herself living with dementia, is in a good position to evaluate how good service provision has been in Scotland. This brings up to date the old adage from Sir William Osler, “Always listen to your patient“.

Of course, things have moved once since Osler’s day. Patients using the NHS when they’re ill also aspire to live in healthier times as a person in the community.

In September 2012 the organisation of International Chief Health Professions Officers (ICHPO) provided an agreed definition of an Allied Health Professionals:

“Allied Health Professions are a distinct group of health professionals who apply their expertise to prevent disease transmission, diagnose, treat and rehabilitate people of all ages and all specialities. Together with a range of technical and support staff they may deliver direct patient care, rehabilitation, treatment, diagnostics and health improvement interventions to restore and maintain optimal physical, sensory, psychological, cognitive and social functions.”

After my own coma due to meningitis in the summer of 2007, I could not walk or talk. I could not make a cup of tea, let alone plan a shopping trip in a local supermarket. With the help of a superb physiotherapist and occupational therapist in the neurorehabilitation ward of the National Hospital for Neurology and Neurosurgery, I was able to relearn from scratch these skills. I had in fact been a junior doctor there.

I think it’s easy to get wound up in processes in policy to do with allied health professionals, and only to view them within the never-ending prism of ‘vanguards’ or ‘new models of care’, but anyone with reasonable clinical experience will know of their pivotal importance in healthcare.

That is not to say we should overlook the opportunity of how they can operate in the community, including primary care settings, hospitals, hospices, and care homes, best to promote continuity of care and wellbeing. The driving force for this might indeed be reducing the ‘financial gap’, but my perspective is very much on reducing the ‘wellbeing gap’.

Today brought very conflicting news internationally. On the one hand, the UK Government were able to secure from parliament a mandate for bombing ‘ISIS’/Daesh in Syria with military air strikes. On the other hand, it was the International Day for Disabilities in celebration of enabling people. I have written about the latter issue here already.

At first, it might seem the military analogy of dementia might have a lot going for it. For example, a Doctor from a distance might authorise a prescription of a cholinesterase inhibitor, at a comparable distance in the air for a military strike. It is not clear what the borders of dementia are, in the same way geographical boundaries in Iraq/Syria have been argued to be poorly described. There is a need to form a geographical coalition to defeat Daesh, in the same way that countries around the world, including the G7, are “defeating dementia”.

But are the foot soldiers, indeed, “allied health professionals”? If the enemy is dementia, these foot soldiers in the absence of an outright cure thus far or effective sustainable long term treatment are potentially encouraging people to co-habit with the enemy.

So there are clearly limitations with the military analogy.

But the foot soldiers can give people with dementia the ‘tools’ to function well, such as access to exercise or assistive technologies, broadly in keeping with a reablement or rehabilitative approach for any long term condition; or they may come in the form of Admiral nurses to empower carers with coping strategies.

So what’s the problem?

We don’t have enough of these ‘boots on the ground’ for dementia.

Enhancing health and wellbeing in living with dementia: care homes and care at home

Shibley Rahman 0 Comments

Untitled-16

 

I am currently working on this third book on dementia.

 

 

These therefore follow on from my previous books ‘Living well with dementia: the importance of the person and the environment’ (CRC Press, 2014) and ‘Living better with dementia: good practice and innovation for the future’ (Jessica Kingsley Publishers, 2015).

I am honoured that the book will have forewords from Prof Sube Banerjee, Professor of Dementia, who co-authored the 2009 English dementia strategy, Lisa Rodrigues and Lucy Frost.

Whilst recent years have witnessed massive progress in dementia friendly communities in the UK and elsewhere, there has also been a greater scrutiny of ‘post diagnostic care’. This book reviews the evidence for enhancing health and wellbeing for people living with dementia, and will be useful for anyone designing, researching or using these services. The quality of residential care settings is intimately related to the philosophy and culture of care, but there is growing recognition that residential homes are part of an extended system of the provision of healthcare including the acute hospital. People living with dementia are entitled to the best standards of health care, for both physical and mental health, but also need their life story and identity to be respected. The book concludes by evaluating critically what features of the healthcare system might be desirable to encourage independent living (including at home) and integrated health, and why palliative care and specialist nursing must be a key factor in the design of care pathways at both a national and local level.

A detailed consideration of end of life care and life story, whilst introduced in this text, is beyond the scope of this book. They are covered elsewhere in detail by future books from Jessica Kingsley Publishers.

Having your cake and eating it

Shibley Rahman 0 Comments

CU2x9_fW4AATGqt.jpg-large

 

People still want to have their visions, and also their key performance indicators, in the modern NHS and social care. This is otherwise known as “having your cake and eating it”.

For all the ‘feel good factor’ of power transitioning ‘to the edge’, it is still nonetheless the case that people with the long business titles will be invited to give talks at conferences as speakers, and those who don’t won’t (and can’t often attend due to the ensuing financial barrier). Often these are not the people who know the day-to-day running of health and social care.

I am basically hoping that the discipline of ‘change’ will now become paralysed through being over-analysed. The discussion of change, I am sure well intentioned, has become so overcharged with terminology and jargon such as ‘boat rockers’ and ‘change catalyst’, so as to be exclusionary, non-accessible and non-inclusive.

There is little which is certain about life other than death and taxes. But I am sure that junior doctors are too overworked to think about their work as being ‘rebels’. Junior doctors do not enjoy being in a hierarchy, but they are. Otherwise, it would be the case they do not need to go on strike to achieve fair terms and conditions for their huge work commitments.

Contrast this to my experience.

I really enjoyed our ‘meet up’ last week in Llandudno, North Wales. In one session, we were sitting on different tables, with a non-contrived mix of people living with dementia, carers, academics, commissioners, and other interested parties. I found that people living with dementia and carers easily found themselves rising to the top of the most valuable contributions, despite all the talk of ‘flattening hierarchies’.

I think the ‘flattening hierarchies’ narrative is misplaced.

I believe that people with dementia and those closest to them ought to be listened first, when it comes to working out whether processes and systems for research and service provision are working.

I think the ‘don’t ask for permission’ meme is inadvertently wrongly positioned.

I think the ‘don’t ask for permission’ meme inadvertently assumes that the wounded party is necessarily already having to ask for permission. I know plenty of people living with dementia who do not need to be told that they are allowed to be leaders. They are not sitting around waiting to be told – otherwise they would be taking on a rôle of submission.

A ‘call to action’ is fine, but not what is fine is the bandwagon effect of people absorbed into a massive groupthink making it harder to make a very small change at a local level. The group think of becoming ‘dementia friendly’ according to one large organisation can easily see wilful blindness to the closure of respite services or provision of a service of clinical specialist nurses locally.

For me, ‘change’ has become a cult. You can spot identical memes on Twitter, and it is getting nauseating. I dread to think what would have happened if Martin Luther King and Mahatma Gandhi had processed mapped their struggles onto a ‘call to action’.

Likewise, people living with dementia and carers beware.

Review of my book ‘Living better with dementia’ in Mental Health Today

Shibley Rahman 0 Comments

Bk2

Many thanks to Fenella Lemonsky (@organiclemon) for this helpful review of my book in “Mental Health Today) [here is the link to the original article.]

I find reviews like this a useful steer on future work. Academics can be notorious in misjudging the ‘mood music’ of the main drivers behind the service: people who use the services, which in my case are people living with dementia, their friends and family and other carers. I am in a privileged position in having access to thousands of peer-reviewed papers, but also feel that I have learnt a lot about the dementias from people living after a diagnosis. My knowledge of dementia has vastly improved since I took myself away from the medical lens, and adopted a viewpoint of other professionals and practitioners and people living with disability.

 

The Forewords to this text are by Kate Swaffer (@KateSwaffer), Chris Roberts (@mason4233) and Beth Britton (@BethyB1886).

 

The book is on Amazon here.

 

The review:

 

Shibley Rahman, 2014, CRC Press, ISBN 978-1908911971, £29.99

There has been much written and spoken about dementia in the media recently as a result of the government’s Dementia Strategy, which aims to help those with dementia, their families, professionals and carers be more responsive to needs.

In this context, Living Better with Dementia, by Dr Shibley Rahman, a dementia expert who is qualified in medicine, neuroscience and law, is highly relevant.

Initially, Rahman talks about the stigma of dementia and how this has remained through the past century, despite dementia becoming better understood and having a more positive outlook in recent years. While dementia and the whole management perspective can appear a challenge as the older population survives longer, this book is encouraging and positive. Specific medication that delays the onset of dementia symptoms and other medication like antipsychotics are discussed at length, including their use in nursing and care homes and how specific practices that have no evidence base can be challenged.

Two chapters that for me stuck out as very important were on young onset dementia and on antipsychotics and innovation. Young onset dementia was first explained to me at the author’s book launch, where nurse lecturer Kate Swaffer from Australia, who has young onset dementia, gave a moving talk. The impact is huge for the individual, their family and peer network as well as professionals. It affects employment, career opportunities and has a huge stigma attached to it as it is still often misunderstood. This is all discussed in the book.

The use of antipsychotics and care homes is also discussed at length. This is an important chapter, especially for those who look after those going into residential care, and it can enable them be on alert to good practice and how to spot where medication is used inappropriately. Antipsychotics use in care homes is a complex issue. In many cases careful use can ease distress and agitation, but there seems to be concerning evidence that there is over-prescribing of antipsychotics where behavioural treatments are more appropriate. Using extensive research, Rahman explains why using antipsychotics needs careful thought.

Other chapters focus on deprivation of liberty, sporting memories, global view and leadership strategies.

This is a well-written, extensively researched, easy to read and important book for anyone interested or working with dementia.

Rating: Highly recommended.

Review by Fenella Lemonsky, mental health service user researcher

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.

 

 

The ‘faces of dementia’

Shibley Rahman 0 Comments

I am not actively antagonistic towards the medical ‘profession’, but I think I should be allowed to offer some healthy criticism of their activities as regards dementia. Their activities can tend to belittle people into a portfolio of clinical meetings and investigation results, charting decline in people with dementia, and not offering anything much in the way of life planning, care or support. The lack of drive for clinical nursing specialists, say compared to Marie Carie and Macmillan, is a testament to a profound impotence in clinical leadership in some places.

 

And yet UK dementia research is flourishing, a true envy of the world, while junior doctors sadly are thinking about strike action. The two cultures are fascinating, but, on the international scene, there are some remarkable people with dementia doing remarkable things. I do somewhat resent how little I was ‘taught’ about living with dementia at medical school, but I think ultimately I was to blame. The NHS ‘teaches’ you to treat clinical care in hospitals as processes which need to be ‘productive’ and ‘efficient’. I would encourage any junior in training to read up about living with dementia from any possible diverse source. For example, reading this piece on living with posterior cortical atrophy by Valerie Blumenthal will teach you much more about humanity and the condition, than many decades at medical school might.

 

DSCN0029

 

My friend Helga Rohra was elected to the position of Vice Chair of Dementia Alliance International. Helga was already Chair of the European Working Group of Persons with Dementia, a group which has had success in mapping the concerns of people with dementia and carers onto European policy. Helga’s book is currently being translated from the German to English (we hope); and Helga’s career as a translator who spoke five languages is not to be dismissed lightly.

 

Every day, Agnes Houston MBE is active in campaigning about dementia. A proud member of the Scottish Dementia Working Group, Agnes’ own particular interests are sensory issues in dementia.

 

DSCN0074

 

I have met some extraordinary people in the last two years, since my interest in dementia became less from the perspective of my medical training and more to one of essential humanity.

 

The late Tony Benn used to joke about how the term ‘activist’ tended to be used pejoratively as an insult. For example, a vicar might be a ‘religious activist’, or an author might be a ‘literary activist’. I still hesitate when I hear the term ‘dementia activist’, as I feel that it puts an unnecessarily militant overtone on extraordinary people doing extraordinary things.

 

Take for example Peter Mittler, himself an Emeritus Professor for the University of Manchester. Peter has in fact got an incredibly distinguished career behind him in inclusivity. Hilary Doxford was the first ever delegate living with dementia onto the World Dementia Council, a post which Hilary has executed brilliantly.

 

DSCN0038

 

I will be in Birmingham NEC for the evening of Friday, to be there with my friend Chris Roberts, who has been nominated for the award of most exceptional person living with dementia in the National Dementia Care Awards 2015.

 

DSCN0053

 

Also nominated is Ken Howard, who like Chris Roberts, came to our joint get-together hosted by me and Kate Swaffer in Arlington Centre, Camden. Ken, good luck!

 

11119548_10153400015618076_2785578690077247875_o

 

I don’t like the term ‘stages of dementia’ for the very reasons which our friend Beth Britton describes here. Indeed, I remember Helga specifically railing against this in her plenary speech at the Alzheimer’s Disease International conference this year in Perth, Western Australia, in April 2015.

 

Last night (Aussie time), this morning (London), was Kate Swaffer, another extraordinary person doing another extraordinary thing. Kate is Chair of Dementia Alliance International, and was nominated for Australian of the Year (for Southern Australia). Jacinta’s also in this photo!

 

12241406_10153653608263955_4791476607771362347_n

 

Kate Swaffer maintains a profound interest and expertise in cuisine; Kate even ran a restaurant. There’s very little Kate hasn’t excelled at previously, including poetry and nursing. Kate even achieved a distinction in her Masters in Dementia Care from the University of Wollongong recently.

 

Putting the ‘me’ back in dementia is no small desire; seeing the person beyond the dementia is essential, and I can’t emphasise this enough. I was thinking this morning of what I’d say for the new Nottingham initiative ‘Dementia Day to Day’, and I struck on the idea that what links us all, whether we happen to be living with dementia, carers (including friends and family), people in research, professionals (allied or otherwise), all practitioners including social care practitioners, and so on, is a strong sense of ‘bonding’ and community. I reckon I can spot quite easily people who aren’t ‘team players’. Unfortunately, there’s a minority who are so focused on the bottom line or the next target that such individuals have lost the plot of what living beyond dementia is all about. I think when you as an individual worry too much about your empire or the next grant to commission, more than the actual needs of people with dementia, met and unmet, or worry about your own standing in your industry, you should really begin to worry.

 

The diverse faces of dementia deserve much better.