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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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Views of experts by experience urgently needed for a new book on dementia for junior doctors

I personally find the term ‘expert by experience’ a bit “clunky”, but I am in absolutely no doubt that the people who know about dementia the most are those living with the condition, and they know the most in their specific time and place. Also, people closest to them, often ‘carers’, often know very many things which you’d never discover in any textbook.

You will know that I have a huge amount of admiration for the work of Dementia Alliance International. This is a mantra often quoted by them, which is undoubtedly inspirational.

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I recently had experience of how the acute medical service works in a busy London teaching hospital. This was interesting to me in my dual identities as a family person helping to care and support and as an academic physician in dementia.

There were, in my view, islets of superb care – for example foot massage to improve the wellbeing of inpatients on the hospital wards. They were examples of care which was, arguably, organised from the provider not recipient perspective – like people with memory and attention problems being taken off for investigations without warning. I personally hoped that visiting hours could be more flexible.

I found, however, that senior members of that teaching hospital were very keen to contribute to learning as an organisation. This indeed surprised me.

 

 

I intend to write a book for junior doctors on principles of dementia care.

This book will be made available free-of-charge. It will be open source.

I think it’s fair to say that such a book has to be contextualised at peace with the rest of their professional training.

On the other hand, I don’t wish to produce yet another carbon-copy handbook or guide, particularly when there are so many outstanding initiatives (such as John’s Campaign and dementia-friendly wards) which are already making a difference bit by bit.

 

 

If you’re a person with dementia, or carer, and would like to say what you think junior doctors should know about dementia and dementia care, please complete the short survey here.

The survey will take about 5-10 minutes.

 

Thank you very much.

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