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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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A realistic discussion of the infrastructure of “dementia rights” is needed for powerful advocacy

Amidst the hullabaloo of social enterprises clambering to mount the bandwagon of the latest fad to make a quick commissioning buck in praise of ‘rights’, it’s easy to forget the actual importance of dementia advocacy services. I’ve long felt that the two biggest problems with ‘dementia friendly communities’ apart from the obvious concerns about ‘what is dementia?’ and ‘what is a community?’ is the concern that the dementia friendly communities and their powerful branding might be viewed as some cost neutral alternative to real local services, and the relationship between the State and the community remained poorly defined.

LBC presenter Shelagh Fogarty  (@ShelaghFogarty) yesterday asked a question to her audience, ‘What do you think is important in a community?’ You might not miss the shutting of a local butchers if an out of town supermarket opens up closeby, but you might miss a legal aid centre if you need to query some claim such as in the personal independence payment.

There is a meme circulating on Twitter at the moment that this photograph of dogs sitting round the board room table represents the ‘decision making body’ of laws about healthcare of cats. This was supposed to mock Donald Trump’s latest defeat about healthcare in the US Congress. This reminded me of how global dementia policy is framed for the most part by people already with substantial power and influence who don’t actually live beyond a diagnosis of dementia nor are care partners.

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The law can be an ass, and its problem is that it represents only source of rights; but within that, there are various often conflicting sources of rights.  As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.

Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.

But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.  People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.  The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty. And views differ. Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’. In a world where experts are largely derided and not invited into the committee rooms of revolving-door celebrity attendees of dementia policy decision-making, I feel it is rather important to understand where some of the problems have come from.

Centrally, the law domestically for us, the Mental Capacity Act, gives basic tenets relating to mental capacity. The MCA says (and this comes verbatim from the NHS Choices website):

    • Everyone has the right to make his or her own decisions. Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment.
    • Individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand.
    • Just because someone makes what those caring for them consider to be an “unwise” decision, they should not be treated as lacking the capacity to make that decision. Everyone has the right to make their own life choices, where they have the capacity to do so.
    • Where someone is judged not to have the capacity to make a specific decision (following a capacity assessment), that decision can be taken for them, but it must be in their best interests.
    • Treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms possible, while still providing the required treatment and care.

I’ve already provided a description of the rudiments of mental capacity law (and best interests) in my first book on dementia ‘Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).

The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.

And this sentence from the pamphlet is striking, particularly when you consider the annihilation of dementia advocacy services which accompanied the David Cameron Dementia Challenge:

“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”

The law has to be enforceable at all times, and yet the current situation of deprivation of liberty safeguards (DoLS) is not good. The official figures also show an increasing number of DoLS referrals being left unassessed and statutory time-scales being routinely breached; in England, only 43% of the 195,840 DoLS cases referred to local authorities for during 2015-16 were completed during the year, and of those only 29% were completed within the 21-day time limit set in regulations.

I should like to quote a case study from this pamphlet verbatim, under the conditions of the Open Government license, which shows for me how it is so essential to get this right for every individual involved. This concerns the case of London Borough of Hillingdon v Neary (Hillingdon LB v Neary [2011] EWHC 1377 (COP), [2011] 4 All ER 584).

“Stephen Neary was a young man with autism and learning disabilities. He lived at home with his father, with high levels of support services funded by Hillingdon Council. Steven lacked capacity to decide where or with whom he should live. In December 2009, his father reported to social workers that he was having difficulties coping. The local authority arranged for Steven to stay in a residential support unit. However, staff found Steven’s behaviour very challenging, particularly around food, and were concerned about him returning home. His father wanted him to stay for a couple of days but agreed to an extension of a couple of weeks in the expectation that Steven would then return home. In fact, the local authority kept Steven at the facility for a year, including a period when he was subject to the DoLS regime. The Court of Protection held that Steven had been unlawfully detained and ordered that he must return home to live with his father. The court noted, in particular, that the local authority did not properly discuss its concerns or its plans with Steven’s father, and that Steven expressed a desire to return home. The decision-making processes of the local authority were criticised by the court.”

As it stands, the DoLS are contained in schedules A1 and 1A to the Mental Capacity Act, added by the Mental Health Act 2007.  The DoLS aim to ensure that adults who lack capacity to consent to being accommodated in a hospital or care home for the purpose of being given care and treatment are only deprived of liberty if it is considered to be in their best interests. In simple terms, the DoLS do this by establishing an administrative process for authorising a deprivation of liberty and a means to challenge any such deprivation. The DoLS apply to all hospitals (including general hospitals and psychiatric hospitals) and care homes (including private care homes). They do not extend to deprivations of liberty in supported living, shared lives, and private and domestic settings. The DoLS provide that a hospital or care home (referred to in the legislation as the “managing authority”) must apply to the “supervisory body” for authorisation of a deprivation of liberty on their premises.

There are other problems, other than the sheer volume of cases. Many feel the DoLS exhibit a strange disconnect with the Mental Capacity Act: the Law Commission comment, “the DoLS are seen as incompatible with the style and empowering ethos of the Mental Capacity Act, to which they are attached. The two are often regarded as separate legislation with different legal and philosophical histories“.

There are a number of key recommendations made in the pamphlet, and these are worth noting as they will apply to some people living with dementia:

    • The DoLS should be replaced as a matter of pressing urgency.
    • The Liberty Protection Safeguards should be accompanied by the publication of a new Code of Practice which covers all aspects of the Mental Capacity Act.
    • The Liberty Protection Safeguards should enable the authorisation of arrangements which are proposed (up to 28 days in advance), or are in place, to enable the care or treatment of a person which would give rise to a deprivation of that person’s liberty.

It is worth noting that this will still have to contend with international law, and at the time of me writing this the UK government has no intention of withdrawing from the European Convention of Human Rights (ECHR) despite the imminent triggering of Article 50, commencing the official Brexit process.

In Convention law, a major instrument governing human right, Article 5(1) of the ECHR provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law and is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”). Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful. In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.

But this is not the only Convention right at play. Article 8(1) provides that “everyone has the right to respect for his private and family life, his home and his correspondence”. The right is qualified, and State interferences with the various aspects of the right are permitted where they are in accordance with the law and necessary in a democratic society in the interests of, for example, the protection of health. This is yet another example of where ‘dementia rights’ do not exist in a vacuum, and while placard waving for marketing purposes has a function, it cannot possibly convey the real issues in the actual activation of rights comprising realpolitik.

I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights. It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’). This is the practical heart of the issue, For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”. This was a conjoined appeal of two cases, P v Cheshire West and Chester Council and P and Q v Surrey County Council. I refer to this case in detail in my second book on dementia, published by Jessica Kingsley Publishers, “Living better with dementia: good practice and innovation for the future”.

Lady Hale, giving the leading judgment, held that human rights are the same for everyone: If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. Indeed, many have been critical of the Supreme Court judgment in Cheshire West and
argued that it was wrong as a matter of law. I think the power of this controversial judgment, however, cannot be understated in the context of campaigning for ‘dementia rights’. In particular, the judgment undoubtedly “pushes to centre-stage the
understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners.

Unfortunately, a recent draft of the new Welsh dementia strategy referred to the UN Convention on the Rights of the Child (see e.g. p.15), for reasons best known to them. However, the critical piece of legislation for anyone who has been following this for the last few years, pursuant to the excellent campaigning work of Prof Peter Mittler CBE and Kate Swaffer CEO of Dementia Alliance International is the  UN Convention on the Rights of Persons with Disabilities, which was ratified by the United Kingdom in 2009.

This Convention’s purpose (UNCRPD) is to protect the rights of people who have long-term physical, mental, intellectual, or sensory impairments. Whilst not directly incorporated into our domestic law, it is applied both by the Strasbourg and domesticcourts as an aid to interpretation of the ECHR, including by Lady Hale in Cheshire West. The legal instrument is in my view pivotal in the analysis of Deprivation of Liberty Safeguards, and, if properly applied, could be a powerful legal weapon for people living beyond a diagnosis of dementia. However, its operation in England and Wales is affected by the decimation of law centres which came roughly at the same time as the David Cameron Dementia Challenge, and, while it is fantastic that social enterprises are now maximising value through the advocacy of rights, it is surely not to be forgotten that the stripping away of legal protection of people with dementia and carers has been a very real crisis following the Legal Aid and Sentencing and Punishment of Offenders Act (2012). The swingeing cuts to social care allied mental health professionals and others have been exasperating in contradistinction to the slick social media marketing of ‘I’m alright with rights’.

There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales. Interpretation of these articles must take into account the parlous state of support legal advocacy systems for people with dementia and care partners. This might depend, in part, on recent legislation from the Care Act (2014) (see SCIE link).

The first is Article 14.

The guidelines on article 14 of the Convention on the Rights of Persons with Disabilities concerning the right to liberty and security of persons with disabilities state:

“6. There are still practices in which States parties allow for the deprivation of liberty on the grounds of actual or perceived impairment. In this regard the Committee has established that article 14 does not permit any exceptions whereby persons may be detained on the grounds of their actual or perceived impairment. However, legislation of several States parties, including mental health laws, still provide instances in which persons may be detained on the grounds of their actual or perceived impairment, provided there are other reasons for their detention, including that they are deemed dangerous to themselves or others. This practice is incompatible with article 14; it is discriminatory in nature and amounts to arbitrary deprivation of liberty.”

The second Article worthy of note is Article 12.

Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity. Legal capacity is not actually defined in the Convention and interjurisdictional legal differences will exist, but it can be understood as the construct which gives our decisions and transactions legal significance, how we give effect to our preferences and choices in the real world. The significance of Article 12 lays in its demand that disabled people, including must enjoy legal capacity on an equal basis with others. Article 12 of the CRPD requires ‘equal recognition before the law’ for disabled people and Article 12(2) demands that State Parties recognise that disabled people ‘enjoy legal capacity on an equal basis with others in all areas of life’.

The key to this as indeed the Law Commission discusses is the notion of ‘supported decision-making”: viz,

“The main impetus for supported decision-making schemes has been the UN Convention on the Rights of Persons with Disabilities. In particular, Article 12 (the right of disabled people to enjoy legal capacity on an equal basis with others) has been interpreted by the UN Committee on the Rights of Persons with Disabilities as indicating that national laws should provide support to people with disabilities to ensure that their will and preferences are respected, rather than overruled by action which is considered to be in the person’s objective best interests.”

A danger, some argue, is that Article 12’s wording may permit the continuation of guardianship-style systems based on substituted decision-making, and the continuation of substituted decision-making models could potentially undermine the transformative potential of the entire Convention.

So the Law Commission fudge it a bit:

“We share the aim of ensuring that the person is supported so as to be able to exercise their legal capacity, including through making their own decisions, although, as noted above, we consider that there are some situations in which it may nonetheless be necessary and proper to overrule the ascertainable wishes and feelings of a person lacking the mental capacity to make a particular decision or decisions.”

This is very different from the soothing image of people holding up placards.

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The upshot is that member states must provide the resources and infrastructure necessary to develop models of supported decision-making. If indeed the disability rights community can encourage State Parties to interpret Article 12 in a manner consistent with the aims of the CRPD then it has the potential to deliver real improvements for the lives of disabled people. Ideally, the Dementia Alliance International with the support of their partner organisation Alzheimer’s Disease International, in synergistic strategic alliance with the International Disability Alliance, can pool resources and competences with shared aims.

As the Law Commission note, precisely what the CRPD requires in relation to laws that deal with mental incapacity is still not entirely clear. They claim rather contentiously that there has even been some debate as to whether the Committee on the Rights of the Persons with Disabilities (the UN body which monitors implementation of the CRPD by States Parties) has sought to impose obligations that are not contained in the CRPD itself.

The Law Commission in summary propose the following to outline the potential incompatibility with Article 14 and with Article 5(1) ECHR.

“(1) The Liberty Protection Safeguards are unlikely to comply with Article 14 of the CRPD as interpreted by the UN Committee, which contends that any deprivation of liberty on the basis of a person’s actual or perceived impairment (even where there are other reasons, including their risk to themselves) amounts to unlawful deprivation of liberty.24 However, and as noted in the consultation paper, it is not on its face possible to comply with both Article 5(1)(e) of the ECHR and this interpretation of Article 14 of the CRPD. Moreover, we note that the underlying right to liberty contained in the International Covenant on Civil and Political Rights (which the CRPD is intended to ensure is enjoyed equally by all, regardless of disability) is interpreted in a manner much closer to Article 5(1)(e) by the UNHuman Rights Committee.
(2) Within the limits of our terms of reference, we have sought to draft legislation that is in the spirit of the CRPD. In particular, we have sought to ensure that wishes and feelings are given a particular weight in best interests decision-making by our recommended amendments to section 4 of the Mental Capacity Act. We havealso provided for a regulation-making power enabling  a supported decision-making scheme to be implemented.”

The take home message is that it now looks as if the Dementia Alliance International, with their advisor Prof Peter Mittler CBE, were right all along in emphasising the importance of the UNCRPD. I would go a step further in arguing that the UNCRPD holds the key for lobbying of national governments to ‘up their game’ on national dementia advocacy services, far beyond the rhetoric of ‘dementia friendly communities’ and the ‘marketing of rights’.

 

@dr_shibley

 

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International solidarity needs to override domestic advantage-seeking to promote rights in dementia

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Dementia, legally, domestically and internationally, is a disability. There’s no escaping that simple fact.

Increasingly, I have become very worried about the bastardisation of rights for marketing purposes, losing sight of the real essence of what rights are (or indeed their jurisprudence basis, which is admittedly only a small part of debate).

Dementia friendly communities, although ill articulated (there are over a hundred different types of dementia, and the relationship between the community and the State has not progressed much with the evolution of the concept), are necessary but insufficient as a meaningful contribution globally. They are perfect for branding purposes of charity, including their ambassadors, but the level of discussion needs to be substantially more sophisticated.

The concept of dementia friends and dementia friendly communities was important because it seemed to mark a fundamental shift from a focus on meeting the physical and health needs of the person with dementia to an approach that recognises the need to support the person to achieve the best quality of life possible. But I believe this was fundamentally to misunderstand one crucial aspect: that mental and physical health are a crucial part of wellbeing. Put another way, you are unlikely to be able to participate in community and civic life if you are too depressed or immobile to go out.

There are two very different underlying objectives of dementia friendly communities which have as their end goal a better life for people with dementia. First, the objective of reducing stigma and understanding of dementia by greater awareness and meaningful engagement for persons with dementia of all ages – that is the lived experience approach. There is, unfortunately, a tendency for a ‘celebrity’ approach to the ‘lived experiences’, rather than collating the experiences, views or opinions, or back stories, of people with dementia even if at first they don’t appear ‘particularly sexy’ (or marketable). Second, the objective of empowering people with dementia in their own communities by recognising their rights and capabilities so that they feel respected empowered to take decisions about their lives – the rights approach.

However, I feel that the approach provided by the United Nations CRPD (Convention on rights for people with dementia) is entirely relevant here too. The CRPD sets the stage for a confrontation with the assumption that a disability may unduly justify coercive measures in the form of coercive detention  or as use of force. We saw this in care homes where people with dementia were being physically handcuffed to their chairs to prevent them from going anywhere. It is now incredible to believe that this was deemed possible, although it became institutionally acceptable for people to use the chemical cosh of antipsychotics inappropriately, sometimes, to have the same effect.

The CRPD instead requires that the individual’s self-determination and integrity remain paramount. Under the CRPD, member states have committed itself to raising awareness about persons with disabilities and respect for their rights. The initial failure of the World Dementia Council to have many people living with dementia was a spectacular example of offending this. Generally, persons with disabilities encounter prejudices that can affect whether they can obtain a job or make them feel that they are being discriminated against. The CRPD, rather, emphasises that persons with disabilities have equal rights to participate in political and public life, that is, to take an active part in the governance of Denmark. Even now, the World Dementia Council represents the views and needs of people without dementia already with power and influence, and vested interests, rather than the needs of people living with dementia or care partners globally.

Secondly, the right to live independently and to be included in society are protected by the CRPD. The Convention therefore obliges states to make efforts so that all persons with disabilities can choose their place of residence and not be compelled to live in institutions or institution-like accommodations. The UK and other countries, including low and middle-income countries, have been slow to join up approaches in health and housing, essential for dementia policy. This is going beyond the approach of the celebrity-driven dementia friendly community.

Thirdly, the CRPD furthermore requires that persons with disabilities should have equal access to health care. This I believe is incredibly important, yet many general practitioners and other specialists work in clinics that are not accessible to persons with disabilities, thus preventing persons with certain disabilities from being able to use their local doctor. The same applies to pharmacies and other places that are important for access to healthcare.

BRIDGE CRPD-SDG
The BRIDGE CRPD-SDG was devised to respond to increasing demands for trainings on the implementation of the CRPD and inclusive development, and how these link to achieving Agenda 2030 and the SDGs. It is a coordinated training investment, drawing from the resources and experiences of the IDA and IDDC networks and their members. I feel BRIDGE CRPD-SDG is now essential for dementia to move forward in a strong geopolitical context, away from domestic power games of people gaming the system domestically.

Discrimination of persons with disabilities is widespread – BRIDGE CRPD-SDG training results from common observations that despite great achievements to raise awareness about the rights of persons with disabilities through global advocacy, inclusive societies are still far from the reality experienced by persons with disabilities. Advocating for ‘all human rights for all persons with disabilities’ is urgent yet also complex. The CRPD sets high standards and obligations to ensure the effective realisation of all human rights (i.e. covering all sectors and dimensions of life) for all persons with disabilities (acknowledging diversity of gender, age, culture, impairments, ethnic origin, etc.).

Building a critical mass of skilled DPO advocates representing the diversity of constituencies in all regions requires coordinated efforts. The scope of work requires coordination of efforts drawing from different sources of expertise (e.g. in-depth understanding of the CRPD and its enforcement, inclusive facilitation skills, inclusive policies and governance). It requires drawing from the resources of diverse constituencies.

BRIDGE CRPD-SDG provides an important analysis.

  1. Mitigating against a disconnect between human rights and inclusive development, including the need to address concurrently CRPD provisions and policy reform (including through inclusive development and the SDGs) to avoid a disconnect between human rights standards, and the mechanics required to translate them into local realities.
  2. Inclusion of all persons with disabilities needs to be addressed. As it stands today, however, there are many problems with accessibility: persons who use a wheelchair can still not use public buses because the drivers or others are not permitted to run the ramp out to the wheelchair. Public websites are not always accessible to persons with disabilities. Many polling stations are not accessible, entailing that persons with disabilities are unable to vote at their local polling stations. The list could be much longer. People with dementia are not given the tools to perform the best they can, for example using memory aids or adequate housing or signage.

 

Dementia Alliance International and BRIDGE-SDG
I believe that Dementia Alliance International could foster a powerful synergistic strategic alliance with BRIDGE-SDG, and this could be a powerful key for member states to access rights.

BRIDGE CRPD-SDG strives to enact the general principles of the CRPD throughout its training objectives, content, and teaching methods:

By, for and with persons with disabilities. Advocates are needed with the skills required to participate and influence decisions that affect their lives, in line with the motto of the disability movement “nothing about us without all of us” and the objective of full and effective participation. This is indeed the motto of the Dementia Alliance International (see below). The CRPD is based on the recognition that persons with disabilities have the right to self-determination and autonomy, even when they have difficulty understanding complex issues or have difficulty expressing their views. This is going beyond mere tokenistic empowerment and engagement, or an illusion of involvement.

Ensuring and promoting diversity – Attention is paid to ensure the optimum representation of the diversity of the disability movement among participants, including gender balance, and representation of people with different types of impairments.

Participatory methods – BRIDGE CRPD-SDG is based on mobilisation of participants’ knowledge, and is very practical and participatory. It places emphasis on inclusiveness and strives to ensure inclusive facilitation for all groups and participants. Each participant is selected in relation to their experience, knowledge and active contribution to the promotion of rights of persons with disabilities, and they are expected to actively contribute to the content of the training. This is going way beyond selecting people who can market the shared values of domestic organisation with powerful vested interests.

Dementia Alliance International is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . Members seek to represent, support, and educate others living with the disease, and the wider dementia community. Members comprise an organisation that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

@dr_shibley

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“I” or “We” statements for dementia. Are they making the weather?

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As one of the most important aspects of both policy and dementia care (and the two do overlap occasionally), a person is not to be determined solely in identity by the medical label of dementia. Speaking only medically, it is very unusual for someone to live only live with dementia – dementia rarely travels alone. And secondly, each person with dementia is an unique individual, with a present, past and future, identified in their ‘life stories’. Being an impartial independent academic physician, the “I statements” do not really impact upon my work. But they are of much peripheral interest to me, being on my RADAR or on my line of vision, given that I have a good overview of the current landscape of policy and dementia care both for here and internationally.

The National Dementia Declaration ‘I’ Statements are central to the work of the Dementia Action Alliance (DAA). They are the key principles of the DAA, around which all organisations agree to base their action plans. The idea was that the statements would encapsulate what someone with dementia could say about their life if they were properly supported, and that they would provide an ambitious and achievable vision for how society could support people with dementia.

I feel the statements are as broadly relevant now, as they were when originally proposed. It’s worth noting that a few Department of Health policy plans have emerged frequently since 2012, although there has been no revision of the original five year strategy for England since 2009’s “Living well with dementia”, co-authored by Prof Sube Banerjee who indeed wrote the main foreword to my recent book “Enhancing health and wellbeing in dementia: a person-centred integrated care approach” from Jessica Kingsley Publishers (January 2017).

Personalisation and co-production are important areas of policy development for England, and the contribution from Think Local Act Personal in the development of the ‘I statements’ methodology is formidable (see blogpost here).

The original National Dementia Declaration described seven outcomes that people living with dementia and their carers would like to see in their lives. They provide an ambitious and achievable vision of how they are supported by society. Click here to see a timeline of policy for the provision of dementia care in England.

The National Dementia Declaration is based on 7 ‘I Statements’:

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

I think it’s excellent that there has been active outreach for the views of individuals beyond a diagnosis of dementia concerning these statements. Some of these ‘focus groups’ have utilised the Toolkit for I Statements guiding direction of this work. An overview of the review of this work is provided here.

For what it’s worth, it is imperative that these statements are drafted and developed by individuals with dementia, but there is a debate to be had, hopefully a constructive one, about the extent to which these statements are owned only by people with dementia. These statements are essentially aspirational rather than legally enforceable, and there is a history of aspirations, e.g. the Citizen’s Charter in a previous government, which have not had much teeth in the real world. The advantage of a rights-based approach is that these can include rights which are enshrined in domestic or International legal instruments, for example the Human Rights Act or the United Nations Convention on Rights for People with Disabilities, but the power in these regulations is arguably not from the ability to take someone to court but an acknowledgement and appreciation that a rights-based consciousness can lead potentially to enforcement. Of course, if the mechanism for enforcing such rights in healthcare settings through the Care Quality Commission were more stringent, there might be more trust in regulatory mechanisms against neglect, abuse and mistreatment, for example.

From a purely policy and dementia care perspective, I feel that it is quite important that these statements don’t simply become a checklist for consumer rights, with the person with dementia or care partner merely seen as a paying consumer of services. I personally felt that ‘knowledge is power’, taking ownership about knowledge and know-how about dementia, is incredibly empowering. Every person has a right to good physical and mental health (and wellbeing is part of general health), so I think we all have a part a play here also in keeping people with dementia out of hospital through appropriate self-care and self management. The danger of implementing this in parallel with swathes of cutbacks to public services (even within the guise of sustainability and transformation plans from NHS England) is that personal health and care commissioning can be seen as a cover for cutting further the NHS and social care and more rampant rationing. This is why I feel more ‘choice and control’ is a weak idea unless proper resourcing of budgets exists, as financial poverty is a significant social determinant of health or inequality.

Likewise, I do believe being a valued part of family and community life is incredibly important, but the danger always for dementia friendly communities is that it has been viewed as a cost-neutral tick-box solution, acting to the commercial advantage of high street brands, rather than securing the local infrastructure in essential services such as specialist nurses. I feel that social connectedness, however, is most important for building up connectedness. I think having ‘services built around me’ can be hitting the target but missing the point; it sounds perfectly plausible that the solution might be a dementia adviser signposting to an ever decreasing range of services, but proper infrastructure necessitates a well funded system of social care professionals, district nurses or clinical specialist nurses who allow for continuity of care, training of the workforce, essential care and support for carers and their emotional wellbeing, and offering expertise in palliative care.

I think the length of the ‘I statements’ is fine, but my final concern is whether these statements would be better served by “We statements” in part. For example, collectively, it is motherhood and apple pie to ‘hold out hope’ for more research, but one person living beyond a diagnosis of dementia might prefer more research in better quality of care now rather than the potential for a distant (or more likely failed) cure by the deadline of eight years’ time in 2025. The views of people with dementia collectively are not the same as those of care partners, and indeed might vary significantly in certain areas. One example is non-invasive GPS monitoring of location; this might improve the wellbeing of a care partner and provide better security and safety arguably, but might be seen as an unacceptable invasion of privacy by a person with dementia. This is all to do with the juris sprudence of rights – that the rights of persons with dementia might be complementary to but not the same as those of care partners. We know the needs of people with dementia vary as the biology of the dementia changes, but it is worth noting that the needs of all of us, affected by dementia or not, is changing.

It is worth noting that it is simply impossible and unfeasible to ignore the care partner. Despite a direct duty of care of clinicians to people with dementia, care partners have a crucial role to play in maintaining the health, wellbeing and resilience in people with dementia, in various ways. These could be codified through care planning or case management (see the excellent work of Admiral nurses from Dementia UK), or through unofficial means (professional emotional building which defies metrics and commissioning). The care partner can be instrumental in the timing of a person seeking a diagnosis of dementia in the first place, can  be instrumental in ascertaining when a person with dementia no longer meets the three tests of the mental capacity legislation, or if a person with dementia is unable to live adequately at home and might benefit from a transfer to residential care. The care partner can be instrumental in communication of essential needs,  met and unmet, for both care partners and people with dementia.  So do we really mean “I statements” for only people with a diagnosis of dementia? I believe personalisation is not the same as personhood, although there are similarities. Respecting personhood for me, I hope in the tradition of many others more learned and eminent than me, is to respect the person in the context of his or her environment, and respecting aspects of identity such as sexuality or spirituality. And we need to know how people with dementia can flourish or thrive in the company of others. That’s why “I” doesn’t really mean “I”  but the person living a full life with others – look at Brooker and Latham (2016) on person-centred care. That’s at the heart of why I feel that independence is one side of a coin – the other side of the coin is interdependence.

Independence and interdependence, indeed, comprised a key theme of my book on integrated care noted above.

umbrella

A possible solution then might be to make ‘I statements’ generically intended for anyone ‘affected by dementia’, including a person with dementia or care partner alike. But not even the largest focus group will be able to obtain a list of definitive statements upon which all agree; this reflects the pay-off that often has to be achieved between achieving equality and diversity. And thought diversity is not only to be expected, but to be positively encouraged, arguably in people with dementia and care partners to maximise opportunities for the future and to build up resilience generally.

But I strongly agree with the methodology and the purpose of the “I statements”, and the mere process of engagement and empowerment of people living with dementia and care partners itself is a potentially beneficial one, irrespective of whether the statements indeed have any force. They certainly give some structure to policy aims, but for me it could be a case of the tail wagging the dog as most of the policy climate is there in the global literature and the ‘I statements’ merely are sampling the weather? The crunch question is whether the statements most benefit the person with dementia, the carer, the hosting organisation or none of the above?

Or is it that the ‘I statements’ are making the weather? Whatever, the Alzheimer’s Society and Dementia Action Alliance must be congratulated for an outstanding contribution to dementia, for this.

 

@dr_shibley

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

Untitled-4

 

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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Disasters and dementia: from earthquakes to flash bulb memories

disaster

 

The “International Federation of Red Cross and Red Crescent Societies” definition of a ‘disaster’ is:

“ .. a sudden, calamitous event that seriously disrupts the functioning of a community or society and causes human, material, and economic or environmental losses that exceed the community’s or society’s ability to cope using its own resources. Though often caused by nature, disasters can have human origins.”

Disasters offer potentially valuable information about risks of dementia, as well as insights into wider brain function.

On 11 March 2011, in the early afternoon (14:46 local time), Japan was rocked by 9.0-magnitude earthquake that caused widespread damage to the country’s eastern coastal region. It lasted approximately six minutes, occurred with an epicentre of approximately 130 km (80 miles) east of Sendai City, Tohoku region.

The earthquake was so powerful it moved Honshu, Japan’s largest island, 2.4 metres east and shifted the Earth on its axis by an estimated 10 to 25 centimetres.

Hikichi and colleagues examined whether people experienced cognitive decline in the aftermath of the 2011 Great East Japan Earthquake and Tsunami, in a survey of older community-dwelling adults who lived 80 km west of the epicenter 7 mo before the earthquake and tsunami (Hikichi et al., 2016).

Approximately 2.5 years after this natural disaster, their follow-up survey gathered information from 3,594 survivors.  The association between housing damage and cognitive decline remained statistically significant in the instrumental variable analysis. Housing damage appears to be an important risk factor for cognitive decline among older survivors in natural disasters.

Dementia is a progressive condition which can affect any part of the brain. It therefore offers academics, practitioners and professionals valuable insights into how the brain functions.

But where were you when you first learned about the assassination of John F. Kennedy, the Challenger explosion, or the attack of September 11, 2001?

Variants of this question are often asked, and, usually with great enthusiasm, people reply with vivid, elaborate, and confidently held memories, memories that they claim they will never forget. These so-called “flashbulb memories” are detailed and vivid memories of attributes of the reception context of surprising and emotionally arousing public events.

Brown and Kulik (1977) showed that such autobiographical memories flashbulb memories in order to capture their impression that people had taken a photograph of themselves while learning of a public, emotionally charged event such as the Kennedy assassination.

Research on flashbulb memories that followed their now classic paper occurred, in part, because the “flashbulb nature” of FBMs seemed distinctly different from the character of other autobiographical memories.

One recent event has provided an intriguing account of memory in a person living with mild dementia. It demonstrates for me graphically the enormous complexity with which the human brain handles memory ordinarily. This person with mild dementia had been experiencing difficulties in short term memory, for recent names, lists and events. It also provides yet further evidence how the human brain handles emotion and memory through distinct neural substrates.

The attacks in Paris on the night of Friday 13 November 2015 by gunmen and suicide bombers hit a concert hall, a major stadium, restaurants and bars, almost simultaneously – and left 130 people dead and hundreds wounded.

A person living with mild Alzheimer’s disease underwent a directed interview about these “Paris attacks” (El Haj et al., 2016).

Unlike her memory about the date and month of the attacks, she provided accurate information about the year, time and places they occurred.

She also provided accurate information about how she first became aware of the attacks, where she was, with whom, what she was doing, and what time it was when she learned about them. As for the emotional characteristics of these memories, she tended to have high ratings of vividness and rehearsal. Negative emotional states and great surprise and novelty were also reported.

One reason for an interest in flash bulb memories is that their study may help psychologists understand traumatic memories. Their relevance can be seen in two further different lines of research.

First, epidemiological studies after the attack of 9/11 established that many people in the New York City area who did not directly experience the events at Ground Zero nevertheless experienced symptoms of post-traumatic stress disorder (Galea et al., 2002).

There’s currently some evidence that the part of the brain which might be implicated in vivid flashbacks in post-traumatic stress disorder may be the part of the brain which is one of the first places to shrink in Alzheimer’s disease.

(Neuroimaging research on the neurobiology of chronic post-traumatic stress disorder) has revealed structural and functional alterations in a distinct network of interconnected brain regions, see Flatten et al., 2004.)

This part of the brain is the hippocampus.

Second, brain-imaging studies showed enhanced activity levels of the amygdala after three years for those close to, but not at, Ground Zero (Sharot, Martorella, Delgado, & Phelps, 2007)

Therefore, disasters, man-made or otherwise, offer unique insights into the human brain, and are very relevant to our understanding of dementia.

 

 

Suggested reading

 

Brown R, Kulik J. Flashbulb memories. Cognition. 1977;5:73–79.

El Haj M, Gandolphe MC, Wawrziczny E, Antoine P. Flashbulb memories of Paris attacks: Recall of these events and subjective reliving of these memories in a case with Alzheimer disease. Medicine (Baltimore). 2016 Nov;95(46):e5448.

Flatten G, Perlitz V, Pestinger M, Arin T, Kohl B, Kastrau F, Schnitker R, Vohn R, Weber J, Ohnhaus M, Petzold ER, Erli HJ. Neural processing of traumatic events in subjects suffering PTSD – a case study of two surgical patients with severe accident trauma. Psychosoc Med. 2004 Jul 15;1:Doc06.

Galea S, Ahern J, Resnick H, Kilpatrick D, Bucuvalas M, Gold J, Vlahov D. Psychological sequelae of the September 11 terrorist attacks in New York City. New England Journal of Medicine. 2002;346:982–987.

Hikichi H, Aida J, Kondo K, Tsuboya T, Matsuyama Y, Subramanian SV, Kawachi I. Increased risk of dementia in the aftermath of the 2011 Great East Japan Earthquake and Tsunami. Proc Natl Acad Sci U S A. 2016 Oct 24. pii: 201607793. [Epub ahead of print]

Sharot T, Martorella EA, Delgado MR, Phelps EA. How personal experience modulates the neural circuitry of memories of September 11. Proceedings of the National Academy of Science. 2007;104:389–394.

 

@dr_shibley

 

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Do “the right people” enable change in dementia care?

brand

Whist it is pretty much universally accepted that funding has not kept up with demand in the NHS, yesterday’s capital cash injection for ‘successful pioneers’ for the sustainability and transformation plans was better than nothing, arguably.

My biggest concern for these plans is that they are being set up to fail, if they are not given sufficient financial resources. But I’ve always felt that they should be given a chance to work if two conditions are met. Firstly, that they are not driven by very short time horizons financially (the cost of initial investment initially is high nearly always). Secondly, they should be driven by arguments for better care from practitioners and professionals.

The Alzheimer’s Society is currently running a campaign called ‘Fix Dementia Care’ but it is not entirely clear to me how they intend to fix it.

They indeed call for three things:

1. All hospitals to publish an annual statement of dementia care.

2. Monitor and use the annual dementia statement as part of its Risk Assessment Framework to identify and take action in hospitals where dementia care is inadequate.

3. Care Quality Commission (CQC) to appoint a specialist dementia adviser and include dementia care indicators as part of its Intelligent Monitoring work to improve regulation of dementia services in hospital.

It is hard sometimes for me not to be deeply cynical about the nature of involvement of well meaning people in dementia policy. Around the inception of the Big Society, there was an aim that the third sector would ‘build up the capacity’ of services. Unfortunately, this coincided with austerity-driven cutbacks in public services, so the forging ahead of dementia friendly communities and friendly banking came with drastic cuts to day centres and domiciliary care on its knees.

The “Fix Dementia Care” solution could’ve been written by anyone without a background in dementia, which is what alarms me the most.

For me, it is not simply good enough to heckle loudly from the sidelines and think this is ‘job done’. Big Charity does a nice form of heckling, in that they are highly respected and influential, and very chummy to government. The same people sitting on the same boards, just with different names, running the same conferences, with the same speakers, and the same delegates. And their branding is expensive and nice.

But this is not to address the root of the problem for me. And it won’t in a million years produce ‘meaningful change’, akin to the “million chimpanzees argument”.

I accept the argument that is insufficient simply to ask for more money. However, having witnessed with my own eyes skeleton staff being asked to man hospitals in the name of ‘efficiency savings’, I do have to question the lack of questioning of stripping public services of adequate funding.

Secondly, it relates to the issue that weighing a pig every day does not make the pig fatter. I do not see how such a disproportionate emphasis on regulation, rather than performance management, is meant to be the panacea for dementia care.

It does not address also the need to see what models of care work – for example an important part of wellbeing is to improve the physical and mental health of people with dementia. But this will not always be appropriately through an acute hospital admission, especially if the habitual residence of a person living beyond a diagnosis of dementia is in a care home.

I think ‘speaking truth to power’ no longer is a case where we can reliably expect corporate-like charities to “tell the truth” about the state of the NHS and social care to our current Government. It’s well known that the money to be given to social care for three years, from yesterday’s budget, should have been given as a front-load for next year in itself.

“Speaking truth to power” has become a much underrated trait in these difficult times for dementia practitioners and professionals. There seems to be a somewhat corporate obsession to change, with well meaning people not having the slightest clue about what they’re changing from or to.

All of this is a long distance from the ‘real leaders’ and change catalysts in the NHS being ‘rebels and mavericks’, not people with PRINCE2 diplomas. The fact is that people running change in the main ARE the people with marketing ‘experience’ and PRINCE2 diplomas, and they’re doing the rest of us a massive disservice.  Sadly, the people with the most power tend to be the people with the most influence, even if, for dementia care, they are completely wrong.

I really do wonder whether the ‘right people’ are leading change – whether co-production is a social movement, in the civil rights sense, or just clever marketing producing an ‘offer’? This concerns me most about the brand of ‘dementia friendly communities’.

But I think we have to be brave, and cut our losses. We need to tell corporate-like charity that dementia care won’t be solved by professional brand ambassadors and expensive marketing, and successful e-petitions, but needs substantially more serious professional investment, for example in continuous professional development. Or else ‘policy’ becomes a sub-division of ‘marketing’.

Dementia is not a brand. Get over it.

 

@dr_shibley

 

 

 

 

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Could educating the workforce in dementia become a real ‘social movement’?

social movement

 

Something extremely odd happened with “Dementia Friends”. Its growth rate was rather sluggish, until the floodgates to Dementia Friends Scotland suddenly opened, and then it became online so that you could become a ‘Dementia Friend’ through a quickie online click.

Call me old-fashioned, but this is not a social movement. This is clever marketing. Likewise if you market ‘Dementia Friends’ through the power of international marketing, and your friends in Big Charity abroad, that is not the same as creating a “global” social movement. That is called international marketing.

The beauty with homogenising ‘Dementia Friends’ into a McDonalds style Big Mac product, where everyone receives the same patties and cheese-based sauce, is that it is easy for bite size chunks about dementia to become propagated – perfect for a broad brush public awareness campaign. And it doesn’t need to be done by specialists, who are in the new post Brexit age overrated anyway.

This confusion about the limitations of ‘Dementia Friends’ has become a big problem for the propensity of some people to call ‘Dementia Friends’ “training”. It is categorically not training. It is not regulated by any of the clinical regulators. To sell ‘Dementia Friends’ as training is a mis-sell. To give the Alzheimer’s Society credit, they never themselves purport “Dementia Friends” as training.

I think it is more than a ‘big problem’ in fact. I think this has opened the floodgates to where Dementia Friends has been used as an inexpensive alternative to real training for staff in care homes who do need to be educated to a competent level, as far as a regulator is concerned, in dementia.

We, in the workforce, need to be crystal clear that social care and NHS are on its knees. It’s no good squirrelling away this money in the Budget for grammar schools, or a Brexit slush fund, when all clinicians need to be transparent and speak out openly against the dangerous cuts in care.

All this leads to me to say that clinicians and practitioners in dementia of whatever background, physiotherapy, speech and language therapy, occupational therapy, social care/mental health, physician or psychiatrist, should help in educating each other, about evidence-based good practice in dementia.

I think we should not wait to be selected as ‘special’ from Health Education England, or the such like, but we should use new media to educate the workforce as the situation demands it.

I’ve decided to get the ball rolling by publishing a free 100 page document on ‘Signposts to dementia care’ which sets out the major topics in the new Dementia Core Skills for Learning and Training Framework.

You can download my free document here.

I have produced this book without any funding or commissions at all. I suggest that if you have the time, you can help build a social movement where the workforce can become more dementia-literate in such a way that is not dependent on big corporate sponsorship. Many of us are simply sick of the growth of dementia being sold as a ‘product’ with more emphasis on where the next grant is coming from or the latest brand or PR stunt. There are powerful principles of health equity and universal coverage at stake.

 

@dr_shibley

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The need to match high quality services in dementia with education and training

maze

 

You can of course be forgiven for thinking you live in a ‘parallel universe’ as the NHS and social care get put under the Brexit bus as ‘there’s no money left’ tomorrow in the annual Budget.

 

I’ve just published a free online guide for current practitioners and professionals to help them in their learning about dementia.

 

http://dementiasoc.org.uk/wp-content/uploads/2017/03/V2-Signposts-to-dementia-care-Shibley-Rahman.pdf

 

This is not intended to replace, or to compete with, other platforms of learning. It’s simply to provide a perspective on the current aspirations in education and training in dementia, which may not be immediately obvious to people trained outside of the field of dementia.

 

The guide points to what I think is important about the current literature, but is based on the ‘Dementia Core Skills and Learning Framework’ published last year.

 

http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework

 

This was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England (HEE) in partnership with Skills for Care. Development of the framework was guided by an Expert Group including a wide range of health and social care organisations, relevant Royal Colleges and education providers.

 

Putting together this guide made it immediately obvious to me that the needs of people with dementia in ‘dementia friendly health and social care settings’ are often not met by traditional professional training, but coincide almost exactly with reports of needs elsewhere.

 

The Alzheimer’s Society is about to launch their updated ‘I’ statements. The original National Dementia Declaration described seven outcomes that people living with dementia and their carers would like to see in their lives.

 

A list of them is provided at

 

http://www.dementiaaction.org.uk/nationaldementiadeclaration.

 

Two examples are “I have the knowledge and know-how to get what I need” and “I live in an enabling and supportive environment where I feel valued and understood.”

 

Reflected in my guide, I give an account of the type of information currently available to persons with dementia who come into contact with health and social care services, including research. I think it’s important for practitioners and professionals to know what is out there, in order to be able to signpost to these resources effectively.

 

And dementia friendly environments are not simply wards which have had a lick of paint. In my guide, I signpost to the substantial evidence to what makes an environment ‘dementia friendly’, which might include staff culture or other person-centred behaviours.

 

I’m also struck by how this converges with the findings from Healthwatch, in a report “What do people think of dementia services?” from 19 January 2017.

 

http://www.healthwatch.co.uk/news/what-do-people-think-dementia-services

 

Healthwatch found that the availability and type of information regarding services and support following diagnosis helps to set the tone for the experiences of those with dementia and their carers.

 

They also found that more work needs to be done to make public spaces dementia-friendly by improving elements such as lighting and signage.

 

These findings indeed come from a substantial sample. Since the beginning of 2015, more than 1,000 people across the country have spoken to local Healthwatch about their experiences of dementia care – from the help provided by GPs to the support offered through hospitals and social care.

 

The most troubling Healthwatch finding, I felt, was that more generally, many people felt that the quality of services themselves was inconsistent, sometimes within the same locality.

 

Indeed, it js a stated learning objective of the guide for professionals and practitioners to know how to signpost to high quality services, including hospices and clinical specialist nurses, locally, including an awareness of multi-agency collaboration.

 

It is for me very pleasing to see a rights-based consciousness begin to embed itself from persons living with dementia and care partners. The international work promoting the United Nationals Convention of Rights of People with Dementia has been a big part of this.

 

But it is important that we ensure equality and equity in service provision, and while human rights are universal and inalienable, ‘I statements’ can all too often be driven from the perspective of the consumer and market.

 

And, of course, the overriding objective of the daily work in health and social care sectors will be that professional values, behaviours and skills will to provide the best care and support possible for persons with dementia and care partners to live as effectively as possible. In a person-centred integrated care approach, persons should be both enabled and protected in the right way, in the right place, and at the right time.

 

 

@dr_shibley

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Signposts to dementia care: core themes for learning

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There is little doubt, whatever your views on the current provision of dementia care in England, that ‘dementia’ is much more in the public’s consciousness compared to 2012 when the Dementia Challenge was launched by the then Prime Minister of the UK. The current ‘Prime Minister’s Challenge on Dementia 2020’, referred to several times in this booklet, can be found at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf. There is critically a need to align the success of the ‘Dementia Friends’ social movement (https://www.dementiafriends.org.uk),  spearheaded by the UK Alzheimer’s Society, with an improved consciousness of wider issues to do with dementia in healthcare settings beyond the traditional medical model. Putting ‘dementia friendly health and social care settings’ into practice necessitates a workforce which is literate in the key contemporary issues of dementia care beyond the biology, often identified in cutting edge research, and it is essential that all the members of the workforce are able to cut across their traditional subject interests, whether in physical health, social care, mental health, or otherwise.

 

In all of my dementia books, I have tried to cross traditional subject boundaries to draw on appropriate knowledge from other academic disciplines to reflect critically on the application of a strengths based person-centred approach to supporting the daily life of people with dementia. The HEDN (“A Curriculum for UK Dementia Education”) is an open forum for those who teach or manage courses related to dementia care based within Universities in the UK. As part of its commitment to improve professional education in dementia care, HEDN developed a Curriculum for Dementia Education.  This curriculum was designed to guide Higher Education providers in the key areas for inclusion in courses related to dementia care, at both pre-registration and post-qualifying levels, and is underpinned by a number of essential values and themes (https://www.dementiauk.org/for-healthcare-professionals/free-resources/download-the-curriculum-for-demenita-education/). I feel that Admiral nurses, from the leading charity Dementia UK, have been pivotal in educating the workforce, regardless of care setting, ranging from hospitals to hospices.

 

This booklet is designed to parallel another educational contribution as well. The “Dementia Core Skills Education and Training Framework” was originally commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England in partnership with Skills for Care (see for an overview http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework). My main concern is that people who don’t work in dementia or meet people living beyond a diagnosis of dementia routinely may not be able to see ‘the wood from the trees’ in understanding dementia. This could be due to a plethora of reasons – not least for not having time or resources to attend expensive conferences on the subject. It is essential that research and services are not built around the needs of researchers and institutions, and failure to recognise this can easily explain why some professionals and practitioners operate in a mindset that people with dementia and care partners are passive recipients not active partners of care. My ‘signposts’ in this booklet are not commissioned by anyone for any money. So, therefore, I feel I’ve been able to speak my mind about what’s best in current practice and research. I have done this work out of goodwill entirely pro bono.

 

 

The potential target audiences differ according to different ‘tiers’:

 

Tier 2: Health and social care staff who regularly work with people living with dementia including staff providing direct care and support.

 

Tier 3: Key staff (experts) who regularly work with people living with dementia and who provide leadership in transforming care including social care managers and leaders. A recurrent goal is for the learner to be able to contribute to the development of practices and services that meet the needs of families and carers.

 

I should, however, like to include in this “experts” who live beyond a diagnosis or are care partners. You could do little better, as a professional or practitioner, for example than to read the blog of ‘Dementia Alliance International’, a stakeholder group of people living beyond a diagnosis of dementia and non-profit organisation.

 

I cannot take responsibility for the content in third party hyperlinks or papers, and this document is not to be taken as professional advice. You are strongly recommended to use this brief document as a resource of ‘signposts’ alongside any other learning you are participating in.

 

I have written about many of the topics one way or other in my three books on dementia, listed below:

 

Rahman, S. (2014) Living well with dementia: the importance of the person and the environment, Oxford: CRC Press.

Rahman, S. (2015) Living better with dementia: good practice and innovation for the future, London: Jessica Kingsley Publishers.

Rahman, S. (2017) Enhancing health and wellbeing in dementia: a person-centred integrated care approach, London: Jessica Kingsley Publishers.

 

The free information provided through the Alzheimer’s Society is excellent, and meets the standard for the NHS Information Standard (https://www.alzheimers.org.uk/homepage/250/publications_about_dementia )

 

There are additional ways of keeping up with innovations in dementia service education and learnong: for example, “Dementia Pathfinders” http://dementiapathfinders.org.  I should like you especially to use this booklet as a ‘launchpad’ for your further studies into what dementia is, its significance for people living with dementia, friends and family. Whatever your specialty, I should strongly urge you to seek further education in dementia, in whatever form that takes. Please feel free to evaluate critically what you read here to improve the quality of discourse.

 

London, March 2017

 

 

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