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Human rights in dementia. The only way is Kyoto.

It wasn’t that long ago that many people, after receiving a diagnosis of dementia, would be propelled head-first into an abyss of the health and social care systems, with no supportive ‘dementia friendly communities’.

As leading international campaigner Kate Swaffer provided in a talk in 2016, people beyond a diagnosis of dementia “are not provided with rehabilitation or other enabling post diagnostic support” and “are not provided with the same disAbility support as every other person with a disability”. It is widely recognised that people living with dementia are frequently denied their human rights both in the community and in care homes.

What I feel is the power in dementia is not as such the nebular notion of dementia, but that individuals with distinct lives of their own have rights. As Chris Roberts, also living beyond dementia, said this morning in Kyoto, “People with dementia have their rights trampled on – these are not just rights relating to their disability, but also their human rights”.

The back story is as follows.

The WHO International Classification of Functioning, Disability and Health (ICF) defined disability as ‘an umbrella term for impairments, activity limitations and participation restrictions’ (WHO, 2002, p. 2), referring to the negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors (environmental and personal factors).

According to Article 1 of the UN Convention on Rights of Persons with Disabilities (UNCRPD):

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

In UK law, the Equality Act [2010] states that a person (P) has a disability if:
 (a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

The term ‘disability’ is therefore not meant merely stigmatising label to be imposed upon individuals. Nor is the term ‘disability’ in this context intended to focus on what a person can’t do, but rather the wider societal context in which a person with a disability lives their life and what they can do. This is significant as the act of the diagnosis of dementia not in itself be profoundly disempowering.

National laws and policies (e.g. mental capacity legislation, health and social care services, dementia-friendly communities, etc.) must be compliant with human rights legislation – disability rights are therefore potentially powerful levers for change.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Their mission particularly includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. This unique group advocates for a more ethical pathway of support that includes their fundamental  human right to full rehabilitation and full inclusion in civil society; “nothing about us, without all of us.”

I’ve found their pamphlet ‘The Human Rights of People Living with Dementia – from Rhetoric to Reality’ very helpful.

There’s been a huge amount of work about why the label of dementia can bring with it negative stereotypes and pre-conceptions. The literature since the seminal work of Becker in the early 1960s is now substantial into the field of “stigma”Stigma can be a contributing factor for why people with dementia do not claim their rights.

Owen Miller wrote originally as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, the following.

“But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.”

Kate Swaffer, Chair and CEO of DAI, was the first to use the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her.

Many people with dementia report a common experience of loneliness and social isolation which they experience when friends and family members stop visiting, Older people are more fearful of developing dementia than they are of cancer, a poll recently suggested. Two thirds of people over the age of 50 fear that they will develop the condition, while just one in 10 said they were frightened about getting cancer.

The 161 countries that have ratified the CRPD are required to submit regular reports to the UN CRPD Committee. Non-Governmental Organisations (NGOs) and Disabled Persons Organisationshave the right to submit ‘parallel reports’ which are taken into consideration in the Committee’s Concluding Observations and Recommendations. All of the articles are significant, but it is especially noteworthy that a right to legal capacity on an equal basis was enumerated in the CRPD in Article 12 as a subsidiary to the right to equal recognition before the law.

An accessible Users Guide to the Convention is here.

In March 2015, Kate Swaffer made three demands at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the CRPD
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

It was further reported that, at the Alzheimer’s Disease International conference’s international conference in April 2016, the leaders of 38 national Alzheimer Associations committed to a human rights based policy and full access to CRPD.

Prof Peter Mittler CBE in August 2016 noted:

“But people living with dementia are at great risk of being left behind in the sustainable development groups because there is a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than the inter-sectoral responsibility of all Ministries, including Housing, Transport, Social Care and Protection. These would enable us to have access to the whole range of supports, services and amenities available to persons with disabilities recommended in CRPD.”

The human rights based approach (HRBA) is important.

HRBA is based on participation of people with lived experience, as with the disability rights movement’s motto ‘nothing about us without us’. Yet there is a shocking lack of consultation with people with dementia throughout much of dementia care. It was recently found the quality of dementia care in OECD countries is very poor.

Rights pop in various contexts.

For example:

  1. In many countries people living with dementia are often physically and chemically restrained, even when regulations are in place to uphold their rights. Furthermore, people living with dementia can also be victims of neglect and abuse.
  2. More recently the broader concept of advance care planning (ACP), a multi-stage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care, has been introduced. Evidence shows that one to one discussions with a trained professional over a period of time are the most successful. ACP may thus provide an opportunity for more person-centred care, although such discussions should occur while the person still has capacity.
  3. Sexual self-determination is considered a fundamental human right by most of us living in Western societies. Conduct follows strict rules relating to consent and coercion, but for older people with dementia living in residential aged care facilities, however, the issue becomes more complex. But it is hard to deny a wish for people to form loving relationships, and this is bound to happen too in the context of residential care. We are at danger of treating all relationships which occur in residential care with suspicion until proven otherwise. This arguably offends inalienable, universal human rights and a right to democratic citizenship.
  4. Article 8 of the European Convention on Human Rights concerns the right to family and private life. This includes the right to respect for an individual’s home and correspondence. The right contained in Article 8 is known as a qualified right which means that there may be circumstances in which some interference with it is justifiable. This right means that an individual has the right to the level of personal privacy which is compatible with a democratic society, taking into account the equivalent rights and freedoms of others. Any interference with this right by a public authority, such as CCTV video surveillance, may be subject to a test of acceptability. This might also clash with the so-called “deprivation of liberty safeguards”, where somebody with dementia might have his liberty taken away by the State.

There’s no doubt that human rights are a big deal, and I have no doubt that the WHO/UN Sustainable development groups/human rights approach will become enshrined within the new vocabulary of dementia friendly societies or age friendly cities in time.

@dr_shibley

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Are we “all right” with rights in dementia? Is ‘doing rights’ sufficient?

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On 24 November 2015, long before the bandwagon left the station, I published my blogpost, “Rights-based approaches – what are they good for?”  The modern day equivalent in these days of social media, of chaining yourself to railings, is probably to come up with a catchy meme to reinforce the idea that human rights apply to people with dementia and care partners too. I, of course, use the word ‘bandwagon’ flippantly here – there is no doubt in my mind that none of this would have got the momentum it deserved if it were not for Kate Swaffer and Prof Peter Mittler CBE, a giant in the learning disability academic world, both living beyond a diagnosis of dementia. I should add that the work from Scotland and Ireland on rights-based approaches too have been phenomenal, far predating any work of mine.

For most of this weekend, I had the pleasure of listening to old lectures of the late Prof. Ronald Dworkin, the eminent jurisprudence professor of University College of London. Dworkin would simply take to the microphone, and speak without notes with immaculate detail, on the highly sophisticated details of the law. This reminded me to think about how the marketing of rights in dementia currently runs the risk of producing quite a bland meaningless campaign, a Skoda compared to the Jaguar of Dworkin and the Rolls Royce of HLA Hart at the University of Oxford (who awarded Dworkin a congratulatory first). It is my contention that people with dementia who are very vocally ‘doing rights’ have various degrees of understanding of these rights. I think this poses problems for whether the use of rights is to be of substance, and a meaningful debate about rights is now necessary.

Rights are essentially a matter of conviction. This has led Dworkin, and many of his contemporaries, to think about how they are to be best interpreted. Years before the EU Referendum in 2016 (Dworkin died in 2013), Dworkin used to discuss at great length about the ‘tyranny of the majority’, and whether it could be possible that all legal judgments could possibly have an objective understanding. When you think about how many varied reasons people give for voting ‘in’ or ‘out’ of the European Union, Dworkin’s words seem to me uniquely prescient. But Dworkin deserves credit for bringing legal philosophy within reaching distance of political philosophy for me, even if his ultimate claim that hard complex law have unique solutions (with people having varying degrees of success in finding these solutions) seems a bit far-fetched even from his ivory towers viewing bay. For all of us, law is a matter of interpretation. Dworkin objected to a narrative of law where the moral or political intention was ignored, such that it was reduced only to internal consistent rules made by a supreme power.

That law is a matter of interpretation with a geopolitical context is a critical move away from simply following a rule book, and conceding that a supreme power has an ability to judge whether someone’s behaviour has erred to an extent to merit a sanction. For someone to be ‘all right with rights’ posits an individualistic approach to human rights, and indeed all humans are deserving of universal, inalienable rights. What may seem to someone to be ‘alright with rights’ may mean someone else is ‘not alright with rights’. We know that care partners often have varying, different needs to individuals beyond a diagnosis of dementia. The justification of rights can only be seen in their appropriate context. For example, a person with dementia might be ‘alright’ with his right to privacy, but it is worth noting the particular power the right of this person with dementia might have over the State.

For Dworkin, these rights act as ‘trumps’ – and crucially can override the sum utility of the needs of the rest of society. They are thus anti-utilitarian. Rights are preferences which are given special weight. Dworkin employs this central idea in his essay “Taking Rights Seriously”:

“A right may be regarded as a trump, moreover, even though it might not trump the general good in cases of emergency: when the competing interests are grave and urgent, as they might be when large numbers of lives or the survival of a state is in question. Then, we might say, the trump gets trumped not by an ordinary justification but by a higher trump.” [Justice for Hedgehogs (Cambridge: Harvard University Press, 2011), 473].

The problem this poses for law makers including regulators is obvious. The law is ultimately defined by what is codified at least, and the Care Quality Commission might at one minute decide that covert CCTV surveillance is necessary for all care home residents. There is no right answer. Dworkin might argue that some people might find this morally objectionable, but for Dworkin the relationship between morality and law is crucial, to the extent of wondering whether rights can ever be truly objective. Societal values change. For example, Abraham Lincoln, held by many in high esteem, famously said that he would never sit closer than two places away from a ‘black man’.

Furthermore, we know both from domestic and International jurisprudence that there is conflict of laws. What happens if the rights of the person with dementia conflicts with the rights of the care partner? For all of us, there is an inherent conflict anyway between the rights of liberty and equality, for example. Rex Martin once pointed out that if the conflict in human rights issue is left unresolved, the status of liberal theorist John Rawls’ “basic rights as forming a stable system made up of mutually compatible elements” is uncertain (Martin: Rawls and Rights (1985). Therefore, arguably, no serious human rights theory may ignore that issue. In law, words do matter, which is why it is striking for people to say ‘I am’ rather ‘we are’ alright with rights. This immediately warrants the question of whether a group of people living beyond a diagnosis of dementia are sufficiently homogenous to use ‘rights’ for instruments for specified groups of people (e.g. the United Nations Convention on Rights of Persons with Disabilities).

Latterly, since the time of Cicero at least, groups of different people have upheld their rights to rail against oppression, but rights also are uniquely personal and open to interpretation. Arguably, not to put too fine a point on it, human rights are what makes us all “human”, deserving of dignity. Here dignitas (dignity) refers also to the dignity of human beings as human beings, not dependent on any particular additional status. In this use of dignity, man is contrasted with animals: ‘ … [i]t is vitally necessary for us to remember always how vastly superior is man’s nature to that of cattle and other animals; their only thought is for bodily satisfactions … . Man’s mind, on the contrary, is developed by study and reflection … . From this we may learn that sensual pleasure is wholly unworthy of the dignity of the human race. ’ (Cicero, De Officiis, I , at 30). If you think law is not open to personal interpretation, such as genocide, it is worth noting that different personal views exist on capital punishment and abortion, for example, and the rights therein.

Here, it is worth noting that there is a difference between law and seeking justice. There, arguably comes a time when the degree of injustice, oppression and discrimination reaches a point where fundamental human rights mean just that. The human rights lens reveals issues of discrimination and social exclusion that often underlie abuse against patients. This is critical, since abuses against groups such as people living with HIV, ethnic minorities, sexual and gender minorities, people who use drugs, and people with disabilities are especially rife in health settings. Dementia, sadly, is no exception. It is crucial therefore to help people with dementia and care partners to find meaning in human rights locally. You might feel that it is ‘all right’ for a terrorist suspect to be subjected to torture to save national security, and proportionate to do so, but you might feel fundamentally different about this if that suspect were you.

My own legal background urges me to feel it necessary to ‘proceed with extreme caution’ about the adoption of rights, highly dependent on meaning, and we currently have barely any literature on the cognition of people with dementia in relation to human rights. A real danger is that these rights get bastardised for marketing campaigns for fundraising or commissioning purposes, leaving behind any chance there might have been for a genuine authentic social movement. For me, the ‘turning point’ was Kate Swaffer’s speech at WHO in Geneva as CEO of Dementia Alliance International (link here).

The first principle of the 2003 UN Common Understanding (on a Human Rights-Based Approach to Development Co-operation) states that ‘All programmes of development co-operation, policies and technical assistance should further the realisation of human rights as laid down in the Universal Declaration of Human Rights and other international human rights instruments’.

The key word here is realisation – not just giving someone a pamphlet, a meme and a bandwagon.

I believe that it’s not simply “alright” to be seen to ‘do rights’.

 

 

@dr_shibley

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Rights in the post ‘dementia friendly community’ world

Rights for persons living with dementia are at risk of being hijacked by persons not living with dementia but who want to ‘facilitate’ this industry. Taking the physical disability movement as a comparison, the assertion of disability rights continues to be most vocal from people living with physical disability. Likewise, rights for people living with dementia and carers cannot be sold as bitesize products for commissioners to be truly authentic, further marketed by appropriate ambassadors in third sector entities. The imbuing of a rights based consciousness is too important to be trivialised this way, in a world which lives post ‘dementia friendly community’.

A ‘dementia friendly community’ was wrong at so many levels. The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place. It ran the risk of not only being patronising to a group of people, but being run for the benefit of business and third sector, and careerist people, wishing to seek competitive advantage. It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services, leaving people to be ‘engaged’ at pre-fabricated meetings rather than genuinely involved in co-production. The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau; it is a way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

In a post ‘dementia friendly community’ world, often articulated through the prism of higher income countries, rights take on a different meaning as they are inalienable and universal. They therefore offer an alternative economy to the one occupied by personal budgets and consumer-directed care (again further reinforcing the idea of people with dementia and carers as passive recipients). The alternative economy of citizenship, mutuality and reciprocity, offers a new and important language for the whole 50 million currently living with dementia, and complementary rights for  those closest including unpaid and underpaid carers.

There is, I feel, a great advantage to reframing the debate into one of social capital as a collective good and which emphasises its collective benefits. Under this perspective, trust, reciprocity and strong social norms are seen to effectively regulate cooperative social relationships. The social capital makes the whole stronger than the sum of its constituent parts, and rather than people seen as individual bits in a competitive world behave to ‘fill in the gaps’ of  others. Combining a private and public good perspective, Inkpen and Tsang (2005) provide a network centric definition of social capital as “the aggregate of resources embedded within, available through, and derived from the network of relationships possessed by an individual or organization” (p. 151).

But there is no reason to believe that this other way of doing things should be necessarily denied inward investment; the crucial thing is that this is not just to ‘facilitators’ or big corporates, but for people living with dementia themselves and carers. Dementia is characterised by complexity, and you really have to simplify it at your peril. It also attracts a high level of multiple morbidity; it is extremely unlikely that a person lives with dementia alone, but also with a range of other issues such as heart or lung problems. Therefore, the idea of a ‘dementia friendly community’ is entirely bogus. A community as such which is friendly to ‘dementia’ should be friendly to all, and defining people by disease labels, while enticing to big corporate charities, is not how the real world works at all.

A social network perspective can focus on the enduring patterns of relationships among interacting social actors (i.e. entrepreneurs, firms) through examining the social, economic, or political network structures of ties that provide actors with opportunities and constraints. A core position derived from the network’s notion, as articulated by Mitchell (1974), is “that if people are tied to one another by a variety of links, then they will find it difficult to sever social relationships and therefore are obliged to carry out the expectations and obligations entailed in those relationships” (p. 283).

The ‘interconnectedness’, a term which was all too familiar to Kitwood, is further strengthened now by the ‘internet of things’. There is no doubt that the Internet has significantly expanded the meaning of community for older adults. Once tied to physical locations, communities created through online experiences transcend space, time, language, and financial, physical, and other traditional barriers. Dementia friendly communities became obsessed with the idea of big corporate banks or high street brands welcoming shoppers better; but this was to ignore the plethora of other barriers (such as financial) or physical disabilities stopping people engaging with such capitalist communities in the first place. Dementia friendly communities merely becoming an extension of David Cameron’s version of Nudge capitalism entirely defeated the purpose of promoting citizenship and rights of people living with dementia, unless you happen to believe that their most important rights are consumer rights.

But now there’s the “internet of things” (IoT). Essentially the idea is to give physical objects identities on the internet. Just like your computer or phone are connected to the internet now, in the not too distant future, so too will your car, house, fridge, and almost anything else you can imagine. This world of technology, if not subject to cyberattack or malfunction, might conceivably make one’s life easier. Gartner estimates that the Internet of Things (IoT) will support total services spending of $235 billion in 2016, up 22 percent from 2015. Services are dominated by the professional category (in which businesses contract with external providers in order to design, install and operate IoT systems), however connectivity services (through communications service providers) and consumer services will grow at a faster pace.

In the new post-dementia friendly era, it is imperative that “rights” are not simply viewed as a “nice to have” phenomena, or a new product to sell to commissioners. They can instead be the vehicle by which people with dementia (and other conditions) and carers can flourish. Social enterprise activities are local ventures that have both a market orientation as well as fulfilling a social or cultural purpose. Strengths-based approaches to community development emphasise the social “capital” assets of communities. Strengths-based approaches aim to reinforce local talents and build local capacity, and the critical thing is that, as for physical disability, people’s talents are best harnessed in particular areas. This approach is incredibly important to people who live with dementia still in employment, where neurodiversity means that people are in rôles most suited to them.

By focusing on local priorities and strengths and assets – rather than perceived community deficits – pride, confidence and motivation are enhanced. The rights-based approach uniquely offers people a chance to participate fully, and lessens dependence on external approaches to “solving” local community issues. Social capital, as measured by the strength of family, neighbourhood, religious and community ties, supports both physical health and subjective wellbeing, and raising social capital in local and middle income countries through rights based approaches is achievable.

The success of a ‘dementia friendly initiative’ might include a big grant, angel investors, venture capitalists, or private equity investors. And indeed the lazy wishing to make money out of ‘dementia rights’ will seek the same sources of income. But the interconnectedness of people is the disrupting factor here, arguably. Examples of the pervasive power of online social networks in the lives of older adults are everywhere, including Skype and FaceTime.

Technology can be compared, for example, with traditional approaches of harnessing social capital such as “timebanking”. LinkAges’ Bay Area Time Bank (http:// timebank.linkages.org/) is a community-based service exchange network where members provide neighbourly services to one another  in exchange for time. Facilitating both online and of ine interactions, Time Bank members, including older adults and family caregivers, can address personal needs through exchanges with other members that focus on their interests and skills and explore new possibilities for meaningful engagement in their communities, exactly in the spirit of the timebanking as introduced by ‘true radical’ Prof Edgar Cahn.

Furthermore, there have been lots of potential opportunities in using crowdfunding to support and fund projects in developing economies. According to a recent Nesta blogpost, the countries that raised the most money in 2015 were: India ($27.8m), the Philippines ($26.9m), Nepal ($25.5m), Mexico ($24.8m), and Kenya ($19.9m). All of these countries — with the exception of Nepal — have budding crowdfunding ecosystems and could become leaders in their regions.

Be in no doubt – the language is changing from marketing of facilitation to genuine emboldening of rights, where people with dementia all around the world can call the shots. ‘Dementia friendly communities’ benefited corporate and large charities more than people with dementia themselves, and goodwill for this was bound to run out.

References

Inkpen AC, Tsang EWK (2005) “Social capital, networks, and knowledge transfer.” Academy of Management. Acad Manage Rev 30(1):21

Mitchell JC (1974) Social networks. Annu Rev Anthropol 2:21

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

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.

 

 

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