Tag Archives: Dementia Rights

Shining a light on dementia will give you an altogether different prismatic view of it

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Reading Catherine J Kudlick’s account of her own disability, a visual condition called nystagmus reminded me of how my own late father has been passed up for an opportunity on account of him being “colour-blind”.

Visual disabilities are interesting, but these disabilities occupy an unique position at the cusp between physical and mental health; in fact any physical pathology in the visual pathway from retina to cerebral cortex in the brain can lead to an alteration in visual perception.

Visual disabilities are therefore interesting as they represent the entire spectrum from the medical model to the social model of disability. Cataracts, or opacities of the lens in the eyes, are entirely peripheral. Monet’s change in colour styles can be attributed arguably to his development of cataracts. Cataracts can be ‘fixed’ medically as a day case surgery with laser treatment.

Compare this on the other hand to a dementia which affects the higher order visual processing in the brain. This could happen, for example, in any dementia such as Alzheimer’s disease, and gets called ‘posterior cortical atrophy’. And yet people who experience of this often spend years getting a diagnosis, on the account of being dragged from pillar to post through unproductive ‘eye checks’.

One then wonders if living with a long term condition qualifies you to be in a permanent state of being a ‘patient’. I live with double vision all the time, a sequela of the meningitis I experienced ten years ago almost to the month.

The literal meaning of the word ‘patient’ is “sufferer”. I no longer ‘suffer’ from having two superimposed images in my mind’s eye all the time, as my mind has come to adapt to them. In that sense, I am a ‘patient no more’.

Another literal meaning of the word ‘patient’ is someone who ‘experiences’ a phenomenon. This experience could have negative or positive qualae.

Someone’s experience of dementia might be as a direct result of being frustrated at continually forgetting, often in public, embarrassment-causing situations. Or it could be as a result of the socio-economic environments, due to inadequacies in the health and social care system or personal austerity inflicted by welfare benefits cuts.

I feel increasingly that your experience of a long term condition matches how vulnerable you feel to the external environment. If you’re not vulnerable, you are in a state of being resilient against shocks. In this sense, dementia or delirium parallels physical frailty, in that you can either experience or suffer as a ‘patient’.

But that is not the whole story.

The significance of being a ‘patient’ alters the perception of other people about your identity. You can of course deliberately wish to picture yourself in a state of disempowerment, deserving of sympathy. And that is your choice.

You could suddenly wake up one morning, and think that you’re deserving of campaigning or aid like ‘Band Aid’ was meant to ‘cure’ poverty.

It is possible that one individual could decide that she wants people to be friendly not to her but to her dementia, being ‘dementia friendly’. It could be that a completely different person might find the label of ‘friendly’ awkward, patronising and inappropriate at best.

Proponents of ‘dementia friendliness’ tend, in my experience, to argue that the reality is that one is coming from a very low baseline. That is, the vast majority of people in the general public either do not know or care what dementia is, and therefore are unable to see even at a basic level what sort of environment might be enabling or inclusive to such people.

They also tend to argue that the forced nature of ‘dementia friendliness’ is exactly the sort of shock-tactic that it builds up the necessary momentum to build up culture change.

But I disagree.

I feel it is important not to confuse highly effective marketing or branding with a genuine sea-change in attitudes and swings away from prejudice. Why is it that it is still commonplace to find quite a positive article written about dementia but still littered with the phrase ‘dementia sufferer’?

Tonight, Prof Tom Shakespeare will consider dementia as a rights issue.

Shakespeare, a legendary lecturer who indeed lectured me in Cambridge back in 1994, begins his BBC Radio 4 Point of View programme this evening (8.50 pm Friday 31 March 2017), by saying,

“But if dementia is a disability, why do we not think of dementia as a disability rights issue?  In the last few decades, we have seen wheelchair users, and blind people and Deaf people and people with learning difficulties and all sorts of other impairment groups unite and demand a better deal from a government, and more acceptance from society.  Disability is seen, not just as a health condition, but as a matter of equal opportunities and inclusion.  But when it comes to dementia, we are still thinking in terms of disease and tragedy and passivity.”

Shakespeare then takes the discussion onto a terrain which I wish I had confronted more adequately years ago. That is, whether the term ‘dementia friendly’ itself needs to be challenged on the grounds of being utterly inappropriate.

Shakespeare continues,

“We would need to reform our language, too.  Even a phrase like ‘dementia friendly’, while apparently positive, could be considered patronizing and inappropriate.  The implication is that the solution to the problem is for people without dementia to be kind and considerate and welcoming of people with dementia.  But if part of the problem is socially-imposed barriers, devaluing and even human rights violations, then the term ‘friendly’ might be judged an inappropriate response which we would not use for other minorities.    Why don’t we talk about rights?  We don’t want ‘dementia friendly’ communities, we want ‘dementia enabling communities’; we don’t just need ‘dementia friends’, we need ‘dementia allies’.”

One of the most salient ratios of recent cases handed down by the more senior law courts in England and Wales has been to reaffirm that is impossible to discriminate between people on the basis of capacity when it comes to deprivation of liberty, and this has a resounding basis in the European Convention of Human Rights and the United Nations Convention on Rights of People with Disability.

This is not a question of having a ‘right’ which enables you to sue somebody, but an appreciation that the existence of dementia rights should be embodied to protect and enable people with dementia – the raison d’être of social care.

A diagnosis of dementia, I feel, should not be the beginning of a lingering ‘social death’.

Shakespeare concludes this evening,

“People with dementia may be different from us, in many ways, but they are still human beings…. People with dementia may be different from us, in many ways, but they are still human beings.”

Amen to that!

 

“Dementia Rights” is presented by Prof Tom Shakespeare on BBC Radio 4 this evening (Fri 31 March 2017) at 8.50 pm (see here).

 

 

@dr_shibley

 

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The 'I statements' were not enough. Realistic dementia rights are needed now.

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Of all the junkie platitudes, ‘keeping it real’ must be pretty high up. Mid Staffs and Winterbourne View were keeping it quite real for their service users too, all too sadly.

The history of ‘I statements’ is quite interesting.

In interpersonal communication, an I-statement is an assertion about the feelings, beliefs, values etc. of the person speaking, generally expressed as a sentence beginning with the word “I”. Thomas Gordon coined the term “I message” (the alternative to ‘I statement) in the 1960s while doing play therapy with children.

I-statements are often used with the intent to be assertive without putting the listener on the defensive. They are also used to take ownership for one’s feelings rather than implying that they are caused by another person.

The National Dementia Declaration, introduced a few years ago, is based on 7 I-Statements:

I have personal choice and control or influence over decisions about me.
I know that services are designed around me and my needs.
I have support that helps me live my life.
I have the knowledge and know-how to get what I need.
I live in an enabling and supportive environment where I feel valued and understood.
I have a sense of belonging and of being a valued part of family, community and civic life.
I know there is research going on which delivers a better life for me now and hope for the future.

If these ‘I statements’ were to have gathered momentum and achieved traction, my gut feeling is that they would have done so by now.

However, as with much in English dementia policy, the same messages are often re-branded and re-circulated in cycles of a few years. The point about well-set objectives is that they ought to have some meaning.

The November 1981 issue of Management Review contained a paper by George T. Doran called There’s a S.M.A.R.T. way to write management’s goals and objectives. It discussed the importance of objectives and the difficulty of setting them. Ideally speaking, each corporate, department, and section objective should be:

Specific – target a specific area for improvement.
Measurable – quantify or at least suggest an indicator of progress.
Assignable – specify who will do it.
Realistic – state what results can realistically be achieved, given available resources.
Time-related – specify when the result(s) can be achieved.

What is striking about the ‘I statements’ in dementia is that they mainly focus on care and support. There are somewhat surprising arbitrary exclusions, like in the domains of timely diagnosis and dying well/end of life. In contrast, the implementation of dementia friendly communities in England and Wales was meant to be much wider than the health and social care sector, i.e. empowering people to lead meaningful independent lives.

Reducing ‘what is important’ into a series of a few I statements would be bound as to be effective as the choice of the statements themselves. Human rights, whilst even more reductionist, can be applied to any setting, not just health and social care, and are indeed inalienable and universal.

The problem with the ethos of ‘I statements’ arguably is that rather than focusing on robust human rights which are in principle enforceable through the law (though important moral rights exist) they are a series of aspirational statements. This liberal approach is, nonetheless, more meaningful than a conservative approach where the statements would be more statements of current status.

The ‘I statements’ are also in keeping with a liberalising view of the market. One of the criticisms of the failure of service procurement in dementia is that there is inadequate ongoing assessment of performance of a contract. That is why service contracts in dementia must have realistic measurable outcomes and benefits against which the performance of providers, and commissioners, can be assessed.

There is no doubt, however, that rights are highly relevant to health and social care, such as the right to be with a primary carer on a hospital admission, or a right to food in keeping with your religious beliefs. It is highly relevant how and why these human rights have been embedded (or not) in the culture of the NHS snd social care. The ‘I statements’ are insufficient to meet this policy objective.

It is worth emphasising that this is much more than a turgid argument of policy. This goes to the heart of ‘what matters to you? why did this matter to you?’ approach currently being popularised in Scotland. And indeed other jurisdictions have made great progress in the embedding of human rights in life, through for example the PANEL and FREDA principles.

But the question remains – what rights are important to people living with dementia and their closest? And, more importantly, how do they feel that these rights can be achieved?

The success of the ‘dementia rights’ approach will, I feel, be reflective of the wider climate of the NHS and social care. The current Secretary of State has used regulation to attempt to drive up quality, which in part is a mitigation against risks. This, however, has not driven up quality consistently, and has led consistently instead into a diversion of scarce resources into regulation. However, an approach where people know their rights, and know how to use them to mitigate against risk in all walks of life including health and social care I feel could be useful.

This is why I think a social movement for ‘Dementia Rights’ is now much needed.

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Dementia rights. When the world is not enough.

You will have seen an explosion of stuff on ‘dementia rights’, most probably. The hashtag #dementiarights has been extensively used with a lot of goodwill by many stakeholders in the narrative on dementia.

The campaigning hashtag #dementiarights is not owned by any one Big Charity. Looking at the great tweets using this hashtag you will see immediately why.

Having said that, I have absolutely no doubt there will be a territorial ‘grab’ for ‘Dementia Rights’. It is well known that ‘Dementia Friends’ is protected on the national trademark register across a number of different intellectual property classes including, strangely enough, “playing cards”. There is of course a fine line between legitimate protection of intellectual property and something else which can be diplomatically be described as ‘abuse of corporate power’.

Compared to the Dementia Friends campaign, delivered by the Alzheimer’s Society and Public Health England, to a cost approaching £10 million in total (though official costings are rather difficult to obtain), my Dementia Rights campaign literally costs nothing.

All the material has been written by me. I am dually trained in law, including human rights and intellectual property, and medicine, including dementia, so it was an honour and privilege to write the material.

Whilst there have been no sessions yet, there are two very able Dementia Rights champions who have expressed an interest about doing our information sessions. None of the material overlaps with Dementia Friends material. I know because I was a Dementia Friends Champion.

On the one hand, I really enjoyed the opportunity of explaining to the general public about dementia. National policy in 2009 came at a problem of stigma, prejudice and discrimination against dementia, which was in part attributable to ignorance about dementia. Raising basic awareness of dementia has been a joy for me.

But raising awareness of dementia is no replacement for high quality services, including that delivered by allied health professionals including clinical specialist nurses. As the NHS creaks away from a fragmented illness-fixing service, it will need to work constructively with social care to provide a national wellbeing-promoting service.

Dementia rarely travels alone. In the fervour of raising awareness of dementia, it must never be forgotten what the needs of the people with dementia are, and how they relate to carers’ needs. All people with dementia are entitled to the best quality health and social care services, regardless of setting. This might be at home, in an acute hospital, in a care home, or in a hospice.

At worst, “living well with dementia” can appear like a PR stunt, in the same way it can be glibly claimed that “England can be the best place to have dementia in 2020”. But there still needs to massive work done on the reality – social care funding on its knees, and access to palliative care services can be poor. The reluctance to consider dementia as a terminal condition has been a convenient attitude for those commissioners who wish to make their budgets lean, bordering on anorexic.

Advocating for rights in dementia by people with dementia and carers (and these rights are often complementary rather than the same) is only possible if people know what their rights are. That’s why I believe we do need a national programme to unlock these rights for the general public.

The initiative ‘Dementia Rights’ is designed to be self-sufficient. I have no intention, and nor does anyone else, of running these sessions contemporaneously with Dementia Friends. I do not want to advertise by association, particularly when I feel that dementia has got too marketed and commodified.

Rights in dementia, conversely, are inalienable and universal. It was known that racial segregation was morally unacceptable prior to the change in the South African legislation. So it would be wrong to put all your faith in rights in the legal basket.

At a time when the UK government intends to repeal human rights legislation, and with access to justice crippled by the legal aid legislation from 2012, it would be dangerous to make such a campaign too legally focused. The ‘Dementia Rights’ campaign, on the other hand, covers fundamental principles in rights-based advocacy common to all jurisdictions.

Rights are not the only solution. If a 55 year-old female with dementia in a wheelchair, also living with multiple sclerosis, finds herself discriminated against, she might also have a valid claim in sex discrimination, age discrimination, or disability, depending on the material facts.

During the #AliFuneral, for the amazing rights activist and boxer (and many other things) who is Mohammad Ali, somebody tweeted this great graphic about the identity of ‘Wonder Woman’.

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But the analysis in law should not be obstructive to her fighting her injustice. And it needs to be shouted from the rooftops that dementia itself is a disability.

The ‘Dementia Rights’ social movement has complementary but different aims to Dementia Friends. They indeed  have completely different logos, with the Dementia Rights logo incorporated the international emblem for human rights. There are nearly 2 million Dementia Friends, and currently 0 Dementia Rights supporters. It is lazy to claim that there would be ‘some confusion’ only unless you take a very aggressive approach to intellectual property rather than have a genuine interest in public policy. And besides, the Court would flatten any claims under the Trade Marks Act (1994).

In response to my claim to be left-wing than others, the other day, somebody whom I respect massively said, ‘Well, Shibley, you’d be surprised’. I am determined to make my initiative ‘Dementia Rights’ available for the public good for free. I do not intend to ‘sell’ it to commissioners, because human rights and ideally their implementation should not cost money.

Therefore, I am designing a new website, and, as soon as the website is up and running, all of the materials will be downloadable for free. In particular, I want the Alzheimer’s Society, Dementia UK, Alzheimer’s Research UK, DEEP and Dementia Alliance International to know that they can do whatever they want with the initiative.

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A sense of agency and urgency is at the pivot of 'dementia rights'.

This week, the first two ever Dementia Rights Champions will give their first information sessions in the innovative ‘Dementia Rights’ programme.

Dementia Rights is a novel, innovative programme designed not just to dispel the stigma and prejudice which can surround dementia, but also is supposed to be of practical help to people living with dementia in the UK to help ‘unlock’ their rights.

Dementia Rights information sessions are about 45-minutes to 60 minutes, and are designed to spread five key messages the Dementia Society  thinks everyone should know about rights.

These are shown on their pledge card.

#DementiaRights

There are currently about 900,000 people in the UK who’ve received a diagnosis of dementia. All of them are defined by their unique identities as persons, not defined by the labels of the dementia diagnosis. The Dementia Friends programme from the Alzheimer’s Society and Public Health England was a social movement launched in 2012 as part of the Prime Minister Dementia Challenge to help to raise awareness of dementia.

One of the key messages in Dementia Friends is that it is possible to live well with dementia. For ‘Dementia Awareness Week’, the Alzheimer’s Society is asking everyone to confront dementia. Their research yet further shows that people are on the whole reluctant to seek a diagnosis. This is possibly due in part to the negative social perception of dementia.

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I presented a talk earlier this year in Budapest at the 31st Alzheimer’s Disease International Conference. This talk presented novel survey data on how knowledge of legal rights from domestic and international instruments was generally poor. This lack of knowledge about rights is a major barrier to the widespread adoption of rights internationally, it is felt.

The international stakeholder group of people with dementia “Dementia Alliance International” have led on this rights based initiative to promote rights. As part of campaign, they have been globally concerned with making sure that people know that they can ‘make a difference’. This sense of agency and urgency is pivotal to make rights for dementia a reality. You can support their brilliant work directly here.

There is a growing feeling that rights based advocacy in dementia is not at all about people making money ‘out of opportunities’, and death by powerpoint or commissioning. I have written a pamphlet on the application of rights in England and Wales jurisdiction, which contains general principles of use in other jurisdictions. I am making this work available for free, but this is no replacement for actual legal advice; the pamphlet is clearly meant to be a general introduction to the area.

You can access this pamphlet here

[pdf-embedder url=”http://dementia-wellbeing.org/wp-content/uploads/2016/05/Final-DementiaRights-20161.pdf”].

You can help this Dementia Rights movement, by contacting me if you want to become a Dementia Rights Champion. I’d love to hear from you.

 

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#DAW2016 Dementia Awareness Week: The Five Key Messages of 'Dementia rights'

#DementiaRights

Dementia Rights” is a social action movement that aims to increase understanding of the importance of rights and dementia and inspire people to take action to promote these rights in the community.

To become a Dementia Rights Supporter, all you need to do is learn five key messages that we think everyone should know about dementia and rights in any country, and then commit to take an action which promotes rights in dementia.

1. Rights apply to everyone, and ought not to be taken away.

The 1948 Universal Declaration on Human Rights is by far the most widely accepted definition of human rights, encompassing civil and political as well as economic, social and cultural rights.

Human rights are relevant to all of us, not just those who face repression or mistreatment. They protect you in many areas of your day-to-day life. So – in summary, key qualities of human rights have been agreed upon by the international community.

Rights can never be taken away, although they can sometimes be restricted – for example if a person breaks the law, or in the interests of national security.

It has been agreed that human rights must be recognised as:

  • Universal: they belong to all of us, to everybody in the world
  • Inalienable: they cannot be taken away from us
  • Indivisible and interdependent: governments should not be able to pick and choose which are respected.  Rights go together with responsibilities.

2. With rights go together with responsibilities expected of individuals.

With rights come responsibilities expected of individuals. “Qualified rights” are rights which require a balance between the rights of the individual and the needs of the wider community or state interest. These inclue: the right to respect for private and family life, the right to manifest one’s religion or beliefs, or freedom of expression.

 

3. Dementia is in law a disability.

A mental health condition is considered a disability if it has a long-term effect on your normal day-to-day activity. There are many different types of mental health condition which can lead to a disability, including dementia. Dementia is one of the major causes of disability and dependency among older people worldwide.

Under article 9 of an international instrument called the UN Convention of Rights for People with Disabilities, all people with disabilities have the right to access all aspects of society on an equal basis with others including the physical environment, transportation, information and communications, and other facilities and services provided to the public.

4. It is possible to enforce legal rights.

Rights can be used in real life locally and have some “teeth”. Legal provisions in equality and human rights are enforceable in a number of countries, either directly or indirectly.

5. A major function of human rights is protect against discrimination.

Disability comes under this as a ‘protected characteristic’, and dementia is a disability. People are not allowed to discriminate because they have any of the protected characteristics. There is also protection against discrimination where someone is perceived to have one of the protected characteristics or where they are associated with someone who has a protected characteristic. Discrimination means treating one person worse than another because of a protected characteristic (known as direct discrimination) or putting in place a rule or policy or way of doing things that has a worse impact on someone with a protected characteristic than someone without one, when this cannot be objectively justified (known as indirect discrimination).

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A quick word about my campaign 'Dementia Rights'

Dementiarights

I intend to launch a campaign called ‘Dementia Rights’.

But I should like to say a few words.

I do not wish to give the impression that I am campaigning on behalf of people with dementia on this. This would be to overrule every instinct I have on this. I have always believed that people after a diagnosis of dementia need to be leading on campaigns themselves. What I have found a bit annoying is some people using people with dementia to further their own script. Like an authentic newsreader.

For this reason, I have decided to time the launch of this at an appropriate time in relation to the Dementia Alliance International (DAI). I think the primacy of their work is paramount. With Dementia Awareness Week in the UK coming up, I’d like to ensure that the spotlight is shining on the right targets. I will be supporting ‘Dementia Friends’ as a Dementia Friends champion as usual.

I part company from the ‘Dementia Friends’ initiative a bit in that I feel the campaign caters well people for people who do not have dementia, and unwittingly produces a ‘them against us’ situation. I find the word ‘friends’ a bit patronising, but I know no malice is intended. It reminds me of ‘Does he take sugar?’ – that’s all.

This morning I was asked to discuss about the use of the hashtag ‘#DementiaRights’ not from anyone I work with usually. The criticism is that human rights are universal and therefore should not be constrained for people with dementia. This is of course correct, and it is an argument I have made myself indeed. But on the other hand I do think for too long, as a person outside of the community of people living with dementia, that the rights of people with dementia have been somewhat ignored – take for example the primacy of the ‘dementia friendly’ (rather than ‘dementia inclusive’) approaches, or the inability to segregate carers’ rights from the rights of people living with dementia. I should like to emphasise that carers’ rights are extremely important too for distinct reasons.

I will not be flogging ‘Dementia rights’ to any commissioners. I will make the materials freely available for anyone to use. Money will not be involved in any way. I am very irritated as you know with dementia being exploited for commercial gain.

The material of ‘Dementia Rights’ will not be confined to any particular geographical jurisdiction.

The format of ‘Dementia Rights’ will be, like Dementia Friends, a public awareness session given by anyone. It will have five key themes, and will be built around various activities and an original analogy of mine to explain human rights.

The aim of this initiative is to bomb policy with rights-based advocacy, and to get people talking about dementia rights. I don’t have the infrastructure of Big Charity, or the resources, but never deny the good which can be done from small acorns, to corrupt a Margaret Mead quotation often used by DAI themselves.

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