Category Archives: Advocacy

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My first ever podcast for ‘The Dementia Monologues’ – on rights and dementia

human-rights

 

In 2015, I published a chapter in my second book on dementia, entitled ‘Living better with dementia: good practice and innovation for the future’, chapter 13 here. This contains a review of the cu

I am now proud to introduce my first ever podcast in a series which I have called ‘The Dementia Monologues’. It is on the subject of ‘dementia rights’.

 

The text of my podcast is below, in case you’d prefer to read it.

 

My name is Dr Shibley Rahman – and I am an experienced researcher, and a academic physician and academic lawyer by training.

 

This is the first of my series of podcasts which I’ve called “The Dementias Monologues”.

 

I hope you like them.

 

The law can be an ass, and its problem is that it represents only one source 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 somewhat astonishingly.

 

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’.

 

Reading something recently 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’.

 

But that is not the whole story.

 

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about.

 

The last big thing, a ‘dementia friendly community’, I feel, was wrong at so many levels.

 

The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place.

 

At best it was merely patronising.

 

It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services.

 

The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau.

 

It is a CRITICAL way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

 

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.

 

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

 

In European rights convention law, a major instrument governing human right, article 5(1) of the European Convention on Human Rights provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law.

 

It 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.

 

This essential human right belongs to everyone – including, crucially, people living with dementia.

 

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”.

 

Lady Hale, giving the leading judgment, held that human rights are the same for everyone.

 

As Lady Hale put it (at paragraph 33):  “The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

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 recently.

 

The nuclear weapon for people with dementia I feel is the UNCRPD.

 

And the nuclear arsenal is completed by two incredibly influential advocates who “mean business”.

 

Prof Peter Mittler CBE and Kate Swaffer of Dementia Alliance International, a powerful advocacy group run by and run for people with dementia, ensured that the UNCRPD rose to the top of the agenda.

 

UNCRPD stands for the ‘United Nations Convention on Rights for People with Disabilities.”

 

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.

 

One of Articles 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

 

Rights are not the only solution, however.

 

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.

 

But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities.

 

As Lady Hale put it (at paragraph 33):

 

“The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

I feel, particularly, that a rights based advocacy offers a mechanism to campaign as a social movement.

 

People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’.

 

Victimhood is sometimes unwittingly exacerbated by big corporate fundraisers – which is why we all need to be vigilant.

 

A rights based approach may help to reset the compass on a certain perception of dementia.

 

There’s nothing too small to make a difference.

 

“Anyone who doesn’t believe that small things don’t make a difference obviously has never slept with a mosquito.”

 

That’s from Malcolm Tucker.

 

Yes – for rights based advocacy, it’s important also to ‘sweat the small stuff’.

 

@dr_shibley

 

 

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

Prism_000

 

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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A word from me about Chris Roberts winning at #DementiaCareAwards 2016

I am delighted that one of my close friends Chris Roberts was selected as Exceptional Person with Dementia last night at the #DementiaCareAwards in Brighton. Thank to Pam Luckock and Fran O’Hara for nominating Chris. I know this will mean a huge amount to Kate Roberts Caz Roberts and Jayne Goodrick. I was honoured when Chris agreed to do a foreword to my second book on #dementia.

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The foreword appears in “Living better with dementia: good practice and innovation for the future” published by Jessica Kingsley Publishers (2015),

Delighted

It meant a lot to me that Chris was able to give a talk on my work at my book launch last year.

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Dementia Society best campaigner of the year 2016 awarded to ten people equally

The following were shortlisted for the best campaigner with dementia for 2016 for the Dementia Society.

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After much consideration, the judging panel has decided to make this award to all campaigners equally.  The finalists will therefore all share this award, as there was nothing to differentiate between them.

The judging panel wanted to commend them on how all the finalists have formed an unique close community in raising awareness about the dementias sometimes having a marked impact on national and international policy, and wanted to mention especially their commitment to a strong sense of peer support and encouragement. Finally, the panel wishes to point out that the list of finalists for this year was not meant to be a complete representation of the brilliant work done by all UK campaigners in the dementias.

24 October 2016

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Why I nominated Kate Swaffer for a University of Wollongong alumnus award

Kate Swaffer has just beaten stiff competition to win the social impact category of the University of Wollongong alumni awards this year.

It was with pleasure that I, with no encouragement, independently decided to nominate Kate for this award.

On the one hand there are a few outstanding people advocating on behalf of people with dementia, an enormous heterogeneous group around the world.

These include individuals in the UK who are right at the forefront of policy decision making now and explaining in conferences what living with dementia is like and what they expect from services and research. But there is a growing band of people around the world who are also contributing diverse views, and together they build up a big picture.

So to isolate any one individual can be self-defeating, when they are all worthy of gratitude for the amount they put in.

I rarely make nominations, so I should like to feel that when I do so I mean it.

On the other hand, awards can be misappropriated for the marketing of organisations with a bottom line heavily involved. But taking a holistic perspective in the round, I think as a society we should appreciate people who are doing excellent work for the public good. We may not always agree on everything, but, to coin a phrase, a lot more unites us than divides us.

Part of my nomination request reads as follows:

“Kate Swaffer has most definitely demonstrated a hugely positive impact on both community and society. This work will have far reaching sustainable and enduring effects on the perception of dementia as well as the prestige of the University of Wollongong for very many years to come.

Evidence of impact is wide-ranging, I feel.

She lives with dementia, but this fact alone is barely to scratch the surface of her brilliance. Kate Swaffer is now Chair, CEO and co-founder of Dementia Alliance International, as well as Chair of the Alzheimer’s Australia Dementia Advisory Group. Within this year, she became a Member of the World Dementia Council, a remarkable achievement in itself as this is a board with highly restrictive membership with outstanding leaders in innovation in dementia service provision internationally.

Kate has also become Board member of Alzheimer’s Disease International, which means that she lies in an extremely pivotal position in the intersection of major stakeholders in dementia at a global level. As you will know, she is an Honorary Associate Fellow with the Faculty of Science, Medicine and Health, University of Wollongong. She is currently a Ph.D. candidate under Prof Jan Dewing and Associate Professor Victoria Traynor at Wollongong, proposing an autoethnographic study of dementia narratives and their ownership. As an academic in this field myself, I have every confidence that Kate Swaffer a remarkable and unique contribution to the academic field. She is in addition a trained Chef and a retired nurse, and these elements to her life can be felt, I feel, also in her almost daily blogging. This massively promotes wellbeing in society at large.

As a humanitarian, an activist and advocate for people with dementia, a published author, poet and international speaker, Kate Swaffer, in her own words, is now “living beyond a diagnosis of younger onset dementia” and came up with the elegant construct of ‘prescribed disengagement’ ®. Kate Swaffer is essentially someone who has refused to be ‘defeated’ by the supremely modest expectations of clinical professionals, in that Kate has kept her aspirations and ambitions at an outstanding level.

I should also like your panel to note further that, since my original application, Kate was a SA Finalist in the Australian Of The Year Awards 2016, winner of the 2015 National Disability Awards: Emerging Leader in Disability Awareness, winner of the 2015 Bethanie Education Medallion, and winner of the Stirling University 2015 International Dementia Leader Award. These, I submit, are clear examples of leadership, particularly in world recognition that dementia is a disability for which enablement is an obligation societally and legally.

As you will know, Kate Swaffer was also a plenary speaker at the World Health Organisation First Ministerial Conference on Dementia in Geneva in March 2015, the first person with dementia ever to have given a keynote speech at the UN World Health Organisation. Kate, I understand, still maintains close links with policy professionals in the World Health Organization.

And finally – Kate’s professional and research interests include quality of life and human rights and disability rights for people with dementia, stigma, discrimination and language in dementia. The SA Dept of Health produced a staff training DVD featuring her story. Her blog has been archived in the PANDORA collection of the SA and National Library, and is used extensively as an academic resource around the world. Her first dementia book “What the hell happned to my brain?: Living beyond dementia” was released in January 2016 by Jessica Kingsley Publishers in London. Her second book about dementia, co-authored with Associate Professor Lee-Fay Low, is to be released in September. I have constructive knowledge of feedback from people living with dementia, citing that the book has been instrumental in providing hope.

One person wrote to her stating that,

“Isn’t it amazing what some education, advocacy and peer counselling can empower us to do?””

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A quick word about my campaign 'Dementia Rights'

Dementiarights

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

But I should like to say a few words.

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

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

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

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

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

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

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

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

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

The deadline for abstracts submission is November 16th 2015.

 

Here’s my sole submission for the 31st ADI conference to be held in Budapest.

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Title:

The awareness of fundamental international legal human rights underpinning rights-based advocacy for dementia.

 

Dr Shibley Rahman

 

Background

 

An assumption invariably made is that the general public, including people living with dementia and carers, have a good understanding of the fundamental human rights which underpin policy.

 

To make use of the rights in rights based advocacy, you need to know what these rights are, as they are enforceable. The Mental Health Foundation published in 2015 their much awaited and influential report ‘Dementia, rights and the social model of disability’.

 

Most significantly, the European Convention for Human Rights (ECHR) and the UN Convention for Rights for People with Disabilities (UNCRPD) apply in Europe and the world respectively.

 

Dementia is a disability under international law.

 

Objectives

 

There are relatively few studies of the level of awareness of international rights.

 

This study aimed to remedy that.

 

Methods

 

A ‘Survey Monkey’ survey took place in the first week of November 2015. Invitations to participate were tweeted regularly. There was no restriction geographically on participation.

 

Results

 

The electronic questionnaire contained 11 questions.

 

A maximum of 54, and minimum of 51, responses were elicited for any one question.

 

19% stated that they were disabled.

The vast majority (83%) perceived dementia to be a disability (answering 4 or 5 on a scale of 0 (not at all) to 5 (very much)).

A substantial proportion of respondents did not know whether right to a personal budget (47%) or a right to a medical diagnosis (39%) were rights under ECHR.

A high proportion (81%) recognised the right to privacy and family life as a human right under ECHR.

Of four instruments surveyed (human rights act, mental capacity act, UNCRPD and equality act), the respondents felt that all four instruments had approximately equal ‘importance’.

A sizeable proportion did not know the availability of the two separate rights to accessibility or to justice under the UNCRPD (54%, 54%).

48% did not know that a right to live independently and in the community exists under the UKCRPD.

47% did not know that a right to work and employment exists under the UNCRPD.

Of the five PANEL principles (participation, accountability, non-discrimination and equality, empowerment and legality of rights), non-discrimination and equality was viewed as the most important (34%); and accountability the least (4%).

 

Conclusions

 

The significance, conceding limitations, of these results for international policy will be discussed fully.

 

 

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The 'faces of dementia'

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

The diverse faces of dementia deserve much better.

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"Stop using stigma to raise money for us", says a leading advocate living well with dementia

Let me introduce you to Dr Richard Taylor, a member of the Dementia Alliance International living well with dementia, in case you’ve never heard of Richard.

“We shouldn’t be put on ice”, remarks Taylor.

“Or when we shouldn’t be put in a freezer, when we our caregivers go on holiday. We too should take a vacation from our caregivers.. enjoy the company of other people with dementia and enjoy their company.”

Dr Taylor had explained how there is a feeling of camaraderie when people living with dementia meet in the room. This is somewhat different from an approach of people without dementia being ‘friendly’ to people with dementia, assuming of course that you can identify reliably who the people with dementia are.

We are now more than half way though ‘Dementia Awareness Week’, from May 18 – 24 2014. Stigma, why society treats people with dementia as somehow ‘inferior’ and not worth mixing with, was a core part of Dr Taylor’s speech recently at the Alzheimer’s Disease International conference held this year in Puerto Rico.

He has ‘been going around for the last ten years, … talking to people living with dementia, and listening to them.”

That’s a common ‘complaint’ of people living with dementia: other people hear them, but they don’t listen.

“Stigma defines who we are.. not confined to the misinformed media, or the ‘dementia bigots’. Stigma is within all of us. When I heard my diagnosis, I cried for weeks… I’d never heard of dementia or Alzheimer’s disease, but it was the stigma inside me.”

Commenting a new vogue in dementia care, which indeed I have written about in my first book on living well with dementia, Taylor remarks: “We’ve now shifted to ‘person-centred care’. I think that’s a good idea. I always ask the caregiver who that person was centred was on previously. But I do that because I know I can a bit of a smart-arse”

“The stigma is in the very minds of people who treat us.”

“But you actually believe we are fading away… and we are not all there… it is not to our benefit.”

“The use of stigmas to raise awareness must stop right now.”

” Very little attention is paid to humanity of people living with dementia.. The use of stigma to raise awareness and political support must stop. We must stop commercials with old people.. which end with an appeal for funds. That reinforces the stigma. That comes out of focus groups with a bunch of people they want to focus on.”

“What would make you give money to our organisation? An older person or a younger person… We had a contest in the United States of who should represent “dementia”. The lady who won was 87-year old man staring into the abyss with a caregiver with a hand on her shoulder…”

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“Telling everybody with dementia that they’re going to die is a half-truth. The other half without dementia are going to die too. Making it sounds as if people are going to die tomorrow scares the life out of people… scares the money out of people.”

But it seems even the facts about dying appear to have got mixed up in this jurisdiction. Take for example one representation of the Alzheimer’s Society successful Dementia Awareness Week ‘1 in 3 campaign’.

This was a tweet.

1 in 3

But the rub is 1 in 3 over 65 don’t develop dementia.

Approximately 1 in 20 over 65 have dementia.

It’s thought that by the age of 80 about one in six are affected, and one in three people in the UK will have dementia by the time they die.

There was a bit of a flurry of interest in this last year.

Neither “Dementia Friends” nor “Dementia Awareness Week” can be accused, by any stretch of the imagination, of ‘capitalising on people’s fears”.

And the discomfort by some felt by speaking with some sectors of the population is a theme worthy of debate by the main charities.

Take this for example contemporaneous campaign by Scope.

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But back to Richard Taylor.

“How are you going to spend the rest of your lives? Worrying about how you’re going to die, or dying how you’re going to live?”

“I believe there is an ulterior motive.. to appeal to our fear of dying.”

“Stop using the fear of us dying to motivate people to donate to your organisations. It makes us mad and complicates our lives more than it needs to be.”

“The corruption of words to describe people who live with dementia and who live with us must stop.”

Dr Richard Taylor argues that the charities which have worked out how best to use manipulative language are the dementia charities.

“The very people who should be stopping corruption in language are the very ones involved in… “We’re going to cure dementia” What does that mean? Or will it be a vaccine where none of you get it and we all die, and so there’s no dementia any more?”

Taylor then argues you will not find ‘psychosocial research’, on how to improve the life of people with dementia.

Consistent with Taylor’s claim, this recent report on a ‘new strategy for dementia research’ does not mention even any research into living well with dementia.

“We are heading for more cures.. we’ve set the date for it wthout defining it. If we’re going to cure it by 2025, what will I see in 2018 to know we’re on track? .. It’s corrupt language.. None of the politicians will be around.. But people with dementia will be around to be disappointed.”

Taylor notes that every article rounds off with: “And now with further investigation, there’s a hope this might do this and this might do that.”

Except the politicians and charities have learnt how to play the system. These days, in the mission of raising awareness’, a Public Health and Alzheimer’s Society project, many articles focus on ‘Dementia Friends’, and people can decide at some later date whether they want to support the Alzheimer’s Society.

Articles such as this, or this, or this, or this, or this, or this, or this, or this, or this, or this, or this, or this, for example.

They could as a long shot decide to support Alzheimer’s BRACE, or Dementia UK. Dementia UK have been trying desperately hard to raise awareness of their specialist nursing scheme, called “Admiral Nurses“.

It all begs the question is the focus of the current Government to promote dementia, or to promote the Alzheimer’s Society?

Take this tweeting missive from Jeremy Hunt, the current Secretary of State for Health in the UK:

Hunt

According to Taylor, “We need to start helping for the present.”

He is certainly not alone in his views. Here’s Janet Pitts, Co-Chair of the Dementia Alliance International, who has been diagnosed with frontotemporal dementia. Janet is also keen on ‘person centred services’, ‘is very proud of the work [we] have been doing since [our] inception in June 2013’, and is an advocate.

“I am an example of where life is taken away, but where life is given back… [I want us to] live well with dementia, advocate for people with dementia, reduce stigma in dementia.”

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