What do we want? Meaningful dementia activism. When do we want it? Now.

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With dementia care on its knees in England, it is impossible to avoid the conclusion that this is in part due to a failed model of ‘dementia activism’ with annually the same dementia activists appearing on the same stage in the same conference talking about the same things.

I do not have any objection to learning from other people’s experiences. The commodification or presentation of ‘lived experience’ as a brand is something, however, to be concerned about. The pattern is the same, only disrupted by COVID-19. A group of people who say they have dementia. As a professional, I am certainly not going to diagnose them at a distance. I am not going to coerce any of them into ‘outing’ their actual diagnoses, because the medical profession takes medical confidentiality extremely seriously, except for example where disclosure is necessary with others at danger potentially. But I could say I have early dementia, and I could say I am an ambassador. This is simply a fact of the problem of the system at large.

Being able is not an invisible impairment. I could say I have an invisible disability, and you could give me travel expenses to talk about it. For example, my perceptual problem could be rare, only known to me. This could happen legitimately in posterior cortical atrophy. Or, I have an insidious change in behaviour and personality. This could happen in behavioural variant frontotemporal dementia. Except one problem here, some ‘activists’ have been heavily promoting the mantra that behavioural symptoms can’t be symptoms of dementia, which flies in the face of the clearly difficult symptoms such as agitation, anxiety and compulsions which can occur as dementia progresses or indeed in delirium superimposed on dementia.  To remind you, the inability of family carers to cope with these symptoms is a huge reason why individuals with dementia can end up in a care home.  The conflation of ‘invisible disability’ with activism with disabilities you can’t ‘see’ is very shrewd in fact. But it is a glaring observation that in this small group of people they never talk about their invisible impairments.

Also, in this narrative, carers, although appendages at conferences at events, do not explain how or when they care in their public skits at conferences. So this educational experience is lost. Caring in families is 24/7 and very real. I know. I am one. We don’t hear of any of the frontlines of caring in dementia, such as social care or NHS continuing care. It’s no accident that the NHS England ‘Living well with dementia’ transformation pathway contains diagnosing well, living well, supporting well, dying well, but no caring well. What sort of nonsense is this?

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This is a product of years of ‘activism’ in England by these comedians.

As I said, I do not have any fundamental objection to experiences. I value experiences. All experiences are valid. They add hugely to the biomedical/social/psychological descriptions in textbooks and lectures. But they are being branded – processed – marketed – and transacted upon. This is totally the wrong approach. There are some proponents of dementia activists who are little more than brand ambassadors for charities or social enterprises, who do not seem to have an authentic interest in the savagery of the injustices of dementia care in England, but rather seem more keen on improving their profile through book sales or Twitter followers. This is wrong. Some of these people do need neuropsychiatric help, because they have been clearly misdiagnosed, having been given a diagnosis a decade ago, with no obvious progression, even allowing for the ‘invisible disability’ get out of goal card. But these are people who one assumes would never have wanted a diagnosis of dementia. Most people in fact don’t want to have a diagnosis of dementia. They don’t see the loss of speech, problems eating or swallowing, delusions or hallucinations, or aggressive behaviour as an ‘opportunity’.

A gadgy catchphrase has been the ‘voice of the person with dementia’. Yes, sure. But why are some voices so inaudible? The voices of those residents with advanced dementia in nursing homes receiving clinical specialist nursing care. There are some people who have literally lost their voice through dementia (for example primary progressive aphasia or logopenic aphasia), and how are they meant to be represented on a fair and equal basis in podcasts or conferences? Some topics are simply out of bounds. I’ve never heard a dementia activist talk about his or her incontinence, psychotic symptoms or swallowing difficulties (assuming these symptoms exist.)

I get trolled about this. I get emails at 8 am saying I am the mouthpiece for the medical profession, I’m doing myself ‘no favours’ and I should know better. From ‘dementia activists’. But there are clearly some bitter people around who should read about the common law and statutory law on malicious communications. I think this whole industry, of a ‘go to’ group, spinning publicly disinformation like a game show, is highly discreditable, and needs scrutiny.

I believe strongly in the presumption of innocence from having done my Master of Law. This gives me a right to discuss human rights in a commentary in Dementia Journal, as I intend to. ‘Lived experience’ has become bastardised in all the wrong directions, with ‘go to’ groups in corporate dementia charities opening up the membership to mild cognitive impairment or MCI too (to allow for people misdiagnosed with dementia who don’t have dementia). We know that MCI includes a functional neurological deficit population (see excellent paper in Brain this year). The whole macabre evolution of ‘lived experience’ gone wrong is discussed competently in this excellent BBC ‘Moral Maze’ here. To re-iterate, I believe strongly in learning from experiences.

The whole thing is sick, sick, sick. These individuals and those processes are diverting valuable scarce resources which we desperately need elsewhere in raising the profile of dementia care in England.

When do we want this scrutiny?

Now.

 

@dr_shibley

 

 

It would be a mistake to apply ‘equality and diversity’ to dementia care in the abstract

In my rather extremist world, I believe all dementia and delirium care should be person-centred. In other words, I don’t care much for the notion that donepezil and memantine ‘work’ on chemical receptors, regardless of one’s sex, ethnicity, and so on. Like many people, as a son of a wonderful mum with dementia, I don’t like the term ‘lived experience’ because it is a term patently invented for the purposes of fundraising and conferences. I think the term ‘engagement’ is utterly fraudulent, because people are rarely ‘engaged’ on equal terms such that both parties benefit to equal extents. And I’ve seen with my own eyes how aspects of dementia policy, including dementia friendly communities, can become a sketchy fig-leaf for marketing purposes; a form of ‘diversity marketing’ or provision of an ‘unique selling point’.

You can come at whether services should be uniquely provided for a particular group, such as Asian people, or people with young onset dementia, in a similar way to whether geriatricians should providing an unique service for older people. For example, you wouldn’t necessarily think that all people in Ireland are the same, and therefore have the same needs. This has its roots in deep seated problems. Think about whether people with dementia have enough in common for you to suggest the notion of ‘dementia friendly communities’, when arguably ‘friendly communities’ should be ‘friendly’ to all. This demands an answer to the question whether the groups of people you define have sufficiently in common, such as ‘young onset dementia’, for them to be considered in a separate segregated group, other than the marketing justification of ‘unique selling point’. The problem with considering ethnic groups separately, for example, is that we end up segregating people further, encouraging a sense of ‘otherness’, when what we want to be encouraging are services or a community inclusive of all.

In my experience, as a son, who is Asian, I think it’s great that carers can be person-centred, but this does not simply stop at being of the same sex, or same ethnic background, or same religion. Respecting sociocultural differences has to be thought about from the practicalities of caring too. For example, an older woman who is muslim with advanced dementia might feel unnecessarily distressed at having somebody changing her incontinence pad who is male and speaks a different language. I found this recently when a befriending partner proposed for mum, with the same sex and same country of origin, could not form a relationship with mum because they spoke entirely different dialects of Bangladeshi.

If you don’t get bogged down in diversity marketing, it is easy to get overwhelmed in equity of access to services for people from particular groups, e.g. LBGT, BAME, etc. But you can’t half observe person-centred care. You have to treat each person’s individuality, even if you group them according to a characteristic. And my conclusion is that too much is over claimed about people with cognitive disabilities being  treated to their detriment under equality legislation. The number of successful cases taken under the protected characteristic of dementia (under disability) is insufficient to draw any meaningful conclusions, and the general situation over legal aid means that people are hard pushed to take up legal claims anyway.

The assessments of cognitive function have to be culturally fair. Just as in assessing mental capacity you should allow for language differences or sensory impairments (e.g. deafness), it is essential that some accommodation is made for cultural backgrounds of people presented as perhaps having dementia. We tend to make other assumptions about all people from all sociocultural backgrounds, as regards their network of friends and family, even when considering broad groups of people such as ‘women’. Even if you exclude one person, that, in my opinion, is a failure. It’s no good saying you have an outreach of 95%, if the other 5% are off the RADAR. And please try not to use that over-used word from the conference and corporate circuit, “hard to reach”. Again, I think the critical thing is not getting in touch with people with dementia and carers ‘for the sake of it’. You have to ask yourself – why have they disappeared off the RADAR? Is it something as simple as the fact that dementia charities sell their products to a particular social clique, and are largely represented by activists and advocates from a particular social clique? Or is that they don’t all use smartphone apps?

Equity is not necessarily the same as equality.

EqualityEquity

It’d impossible to escape from a need to consider what the factors are which cause some people to be over-represented rather than others, and this has to include a consideration of the factors which make us healthy (e.g. determinants such as housing, money, transport). But this applies to everyone – not just people in particular sociocultural backgrounds. The problem with taking the ‘equality ‘ approach, that groups of people have particular disabilities, and need help to get them up to the same level, is that you all too easily abolish diversity. The clue is in the name ‘dementia friendly communities’ which treats people with dementia (similarly to carers) as one huge homogeneous mass.

All too often the mentality has been tick-boxy in being seen to provide ‘equality and diversity’, without thinking through any of the issues or how they relate to each other. A charity which is fundraising may want to present an image that ‘nobody is left behind’, particularly if a person might donate money or contribute to a research project, but it is an altogether different ethos to embrace genuine inclusivity’ ‘nothing about us without all of us’, and really really mean it.

 

@dr_shibley

 

 

What’s the exact problem with the phrase “living well with dementia”?

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Trope is an over-used word. But “living well with dementia” is an over-used trope.

However much you sugar-coat it, there are many aspects to living with dementia for some, including a reduced appetite, having hallucinations, having delusions, potentially strange behaviour such as becoming very disinhibited.

It might be that ‘living well with dementia’ produces no cognitive dissonance for you, in the same way that ‘living well with gangrene’ or ‘living well with scabies’ or ‘living well with necrotising fasciitis’ might. But dementia can be horrible – say if your mum doesn’t recognise you or asks you whether you have any brothers or sisters. To this, the response ‘but it is possible to live well with dementia’ can appear somewhat heartless even to the strongest of souls.

That’s the first thing to say, that my objection to the phrase ‘living well with dementia’ is not that it somehow ‘denies suffering’. And I don’t want to go through for the millionth time the device used ad nauseam that ‘just because we suffer, we are not sufferers’, and bring on the fundraising for (language and stigma) grants for the millionth time.

A rationale for the use of ‘living well with dementia’ is that it is easy to market, for example in fundraising purposes. The official reason is that the use of the phrase mitigates against stigma. This is potentially laudable.

… except when you realise this is an easy thing to claim, but very difficult to measure in any way. Look for example at the never-been-published outcomes of the multi-million £ Dementia Friends experiment.

At worst, “living well with dementia” makes a nice host for cupcakes and speakers from well known corporates on a ‘dementia themed day’.

Meanwhile, back in the real world, when I tell people that my mum has dementia, the reaction is ubiquitously “How awful”. This is not because the campaigning mantra “living well with dementia” has been ineffective, due to my criticism on Twitter for example. It’s because dementia can be an awful condition for the person experiencing it, and the immediate family or friends; unless of course you never get beyond the ‘prodrome’ phrase.

But think about that for a moment.

It would be like someone with pre-renal disease saying that living well with renal disease isn’t that bad, because you don’t have to do dialysis.

Or living well with pre-diabetic disease isn’t that bad either, because your toe hasn’t been amputated.

And so on.

The existence of the same small group of campaigners for dementia who do not exhibit a progressive condition on the face of it might lead to you to believe their diagnoses are ‘none of our business’.

Nobody is asking them to be put under the microscope – except they just appear with remarkable regularity.

But if they are not progressing along a trajectory of symptomatic decline, we need to be very sure about the diagnosis. Whilst they are not holding themselves out to be ‘representative’, the phrase ‘go to group’ for ‘lived experience’ can all too easily trip off the tongue.

This is because there’s only a few of them, and, in their current form, the members of this select group are appearing as if you can ‘live with dementia’ with only very minor adjustments to your lifestyle – since their diagnoses from about 2009 or 2010.

And the effect on skewing samples in public-patient involvement groups can be dangerous, if it’s the same revolving door of patient advocates sitting on panels, doing the “user involvement”, and so on.

It is not in these advocates’ interest to have their diagnoses revised if their symptoms are not getting progressively worse, as the secondary gain from the attention, the book contracts, the conference speeches, is not insignificant.

This could mean potentially that they become trapped with their public personas as ‘having dementia’, and are themselves open to manipulation from people who might wish to make money out of them. This genuinely would be very sad indeed.

The English law firmly believes in the presumption of innocence, and nobody is suggesting for a moment there is any deception. But misdiagnoses do happen all the time, and the significance of the misdiagnoses in this context is not small.

There is so much further to be gained by the wider ‘living well’ narrative which are not so innocent. For example, it could be that if people are living successfully and independently we do not need to be concerned that social care is in such a parlous state.

This is also a subject which does not lend itself to public debate. Doctors are very strictly regulated in the UK, and cannot guess about other people’s diagnoses from afar.

But people who are looking on, who feel their spouses/parents etc. are deteriorating faster than ‘normal’, might blame themselves for not doing a good enough job in caring. After all, ‘caring well’ was actually not stated as a policy goal in the NHS Living well with dementia scheme, which included diagnosing, supporting, living, supporting and dying.

I don’t mind a careful debate, but people I’ve never heard of have trolled me in the social media saying that I do not ‘understand’ dementia, and there is in fact a phase where some people do not decline in performance. Hence, the emphasis becomes you feeling guilty for raising the idea ‘but you don’t look as if you have dementia’ – but the tragedy would be if some of these people in fact do not have dementia but a functional disorder or some non-progressive form of ‘mild cognitive impairment’, a diagnostic category which is hard to take seriously anyway.

We do need to raise attention of why some people cannot live independently, and do need care. These are not the voices of ‘frequent flyers’ in conferences. We need to have a reason why people might want to find a way to prevent the progression of dementia or delay its onset. I don’t think a better shopping experience in the high street is sufficient to support a charity in dementia any more.

 

@dr_shibley

 

Dementia friendliness is so 2014

2014

 

It’s time to “get real” about the direction of initiatives to do with dementia.

 

I ‘get’ single issue politics such as Brexit. I understand how charities are organised by individual conditions. There’s no fundraising for multimorbidity, apart from general taxation. Individuals and organisations can yield power and influence, and, having devoted myself to various aspects of dementia over much of my adult life, and in being a full time carer of a mum with dementia, it is concerning and some regret for me that there is such a high degree of lack of critical evaluation of national initiatives in dementia?

 

I understand the pressure for commissioners to get “ready” results, in particular to be seen to be doing “something” about dementia. I fully have sympathy with the drive to offload needs onto social enterprises and charities.

 

However, I feel that the wider goal of ‘dementia friendly communities’ is a deceitful notion, intentionally or not. There are 900,000 people in the UK currently with a diagnosis of dementia, and a sizeable proportion of these cannot speak, eat or drink in a timely way, get to the toilet on time, and so on. Not everyone, by a long stretch, is ‘living well with dementia’. Not everyone is giving annual talks at conferences, publishing books, or travelling half way across the world. There are people who have been left behind by this rather unpleasant branding of ‘dementia superheroes’. This is far more than ‘advocate envy’, I should emphasise.

 

As a son of a mum with dementia, when I tell others about mum’s diagnosis, I still get the response, “Poor you” or “How devastating”.  This is despite, or even because of, five years of ‘raising awareness’. Did we get an objectively measured fall in stigma or increase in inclusivity when we went from two million ‘Dementia Friends’ to three million friends? How is it that I still hear of commissioners who, to save money in budgets, have deliberately not invested in high quality training in preference to commissioning ‘Dementia Friends’, because Dementia Friends awareness raising sessions come free?  How has this lie, that ‘Dementia Friends’ training are an adequate form of training, been allowed to continue for so long? The term ‘dementia sufferers’ is still widespread, despite the huge quanta of grants awarded on ‘dementia language’.

 

I have listened to the justification for ridiculous ghettoization, such as ‘dementia friendly villages’. It is worth thinking through the practicalities of such initiatives. People with dementia living in a cluster is not integration. It is segregation; at worst it is a form of apartheid based on mental capacity. Furthermore, everyone has the right to a correct and reliable diagnosis. There are people living with dementia who have amassed a “celebrity status”, so that it would be difficult to encourage them to have their diagnoses revised, even if they are not showing any clear decline in cognitive performance from their regular appearances at public events. If their diagnoses are not so robust, should they be ethically fronting ‘dementia friendly communities’?

 

The secondary gain is so potentially significant. This is not a question about undermining diagnoses or undermining people; rather it is a case for respecting all people, and it is a plea for people living publicly with dementia to receive the correct diagnoses, so that they can receive the correct approaches for them, ranging from a cognitive enhancer to cognitive behavioural therapy. I am the very last person to shoot the messenger especially when the message is perhaps itself at fault. But some advocates are not at face value changing in cognitive performance at all, unlike the vast majority who have dementia. If you’re talking ‘carrots’ and ‘sticks’, one huge carrot is the need to understand the mechanisms of the dementias better, and to find a reliable medication for slowing dementia right down, rather than ‘dementia friendly gym gear’ and so forth.

 

The problem is that with this relative under-representation of people with more substantial cognitive deficits or physical problems such as swallowing or continence problems, or no representation of the views of the carers of people ‘living publicly with dementia’, you might reasonably come to the incorrect conclusion that everyone is living well with dementia independently in their own homes; and that anything less is a failure, including a failure of caring often by unpaid family members like me completely at the end of their tether. We have seen umpteen reports and statements about human rights – but, as per autism and learning difficulties, and bad care, has anything substantially changed?

 

How many of ‘I statements’ have led to substantial actionable statements of ‘dementia rights’? What is objectively objectionable is to make rights the domain of those who are most articulate and who have better resources, when rights are actually inalienable and universal.

 

Are people with more advanced dementia or carers likely to support a charity which is more concerned about promoting themselves or a better shopping experience? At a time when most dementia trials, like politicians, have resulted in failure, we need to be encouraging interest in and fundraising to charities which genuinely fund groundbreaking research?

 

We need to invest in the NHS, social care and the top research. I feel that, with initiatives such as the Dementia Research Institute are brilliant. However, overall, unfortunately, I feel that 2014-9 can be looked back upon as a time when there was a lot of puffery and marketing, but little which actually helped, such as reforming the beleaguered social care system, a can kicked a long way down the line. But by 2020 a lot of people might have moved on anyway, and it’s high time we had a quiet word in some people’s shells.

 

@dr_shibley

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

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

The history of ‘I statements’ is quite interesting.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dementia rights. When the world is not enough.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

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

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

 

 

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

The survey will take about 5-10 minutes.

 

Thank you very much.

Scoping exercise for a new book for junior doctors on dementia

new book

 

Recent personal experience has allowed me to witness excellent acute hospital care. But I have also witnessed some examples of how clearly hospitals are potentially unpleasant environments for patients who happen to be living with dementia, and also their closest who accompany for them.

For this reason, I’d like to write a short book on dementia for junior doctors. I intend to publish the book with UCL Press, which will help to ensure high standards in copyediting and other production. I am mindful that hospitals are not the only venue of service provision, training or research (for example) for dementia, and the book should hopefully be of use to junior doctors not in employment, in primary care, in hospices, mental health settings, care homes or elsewhere. I am also, however, mindful of my college (Royal College of Physicians) wishing to train junior doctors able to provide the highest quality in dementia care if they need to.

I don’t wish to write a book focused to help them pass their higher professional exams. I have actually done this for the MRCP as it happens. But I would like to write a book which would be useful as they go about their work on the wards.

The book would be not for profit – but rather be a freely available pdf a valuable online. I was part of a generation which did not have to pay for his university education. Things are totally different now where a medical training can leave people in debt for years.

I am more concerned about publishing a book which is of practical use to patients with dementia, their friends, families and carers (there might be overlap in this). I want the book to be easy to read, not bogged down overly in detail, and be holistic in outlook. Hopefully the book will be useful for junior doctors as they navigate through concerns about the diagnosis itself, or subsequent care and support. For example, due to constraints of employment and training, junior doctors might be unaware of what other health professionals do, or what the needs of carers might be.

Please free to contribute on the form – you can do so anonymously if you so desire.

 

 

Living with dementia: Chris’ story

There’s a new Xbox game called ‘Grabbed by the Ghoulies!”

In this game, a young boy named Cooper and his girlfriend, Amber, are seen searching frantically for civilisation after they take a wrong turn. They are caught in a storm and head to a nearby mansion to seek shelter. Once outside, Cooper checks his map, but is unaware that someone is watching. Baron von Ghoul, the game’s main antagonist, looks down from his window and orders two gargoyles to retrieve Cooper and Amber.

‘Ghoulies’ is a term referring to a part of the body, colloquially and affectionately, affected when ‘hit in the groin’.

A diagnosis of dementia should never been given to the recipient of the diagnosis alone. Many have described the news of a diagnosis as worse than a ‘kick in the groin’. In fact, Chris Roberts, living with a mixed Alzheimer’s and vascular dementia, has mentioned in public how his own diagnosis was disclosed to him on a busy clinic day, with somebody knocking on the door asking if the room was going to be free.

If you ‘believe in’ person-centred care, you believe that care should be person-centred including at the point of diagnosis. This means that the diagnosis is given in a ‘timely’ way, taking on board the diagnosis recipient’s beliefs, concerns and expectations. The term ‘early diagnosis’ is not actually that helpful in this context, as, as such, a diagnosis of dementia of a rare genetic mutation could in theory be conducted in someone’s womb.

Knowing the context of someone’s life is incredibly important for gauging how he or she might react to that diagnosis. A correct diagnosis of dementia is a big deal, but what is often forgotten is that after the diagnosis you might have on average eight years to come. The figures vary in fact – Chris and I both know people who’ve had from two to at least sixteen years.

But the point is this. Irrespective of the current situation with ‘cures’ and ‘treatments’ for dementia per se, it’s the case that ‘dementia tends not to travel alone’. A person with dementia being admitted to hospital is likely to live with numerous other conditions, and be on the receiving end of numerous pharmacy prescriptions.

A person with dementia is an individual with a name, beliefs, concerns and expectations, and unique identity. His or her friends or family can end up being pivotal in a caring role, and, following diagnosis, the aim should be fully to enable and protect that person to live life with dementia to the full.

Whether or not the diagnosis and what follows happens in primary or secondary care, people living with dementia are entitled to the very best outcomes in health and social care. Indeed, most of the ‘suffering’ for people with dementia and carers can come from the devastating cuts in health and social care budgets.

Following the Prime Minister’s Dementia Challenge, England is in a hugely better place with dementia inclusive communities than before. Dementia is actually a disability under current equality legislation in force, and people with dementia are worthy of ‘reasonable adjustments’ just as in a physical disability. But it is important likewise to realise that a person with dementia has a unique set of positive skills and abilities too at any one particular time; this approach is known as ’embracing neurodiversity’.

What will happen on Thursday in the flagship BBC series ‘Panorama’ is Chris’ story. The title reflects correctly the notion is that this programme is not a definitive guide to living with dementia for everyone. Everyone has different unique experiences.

But this is Chris’ story. Chris was 50 when diagnosed with young onset dementia. He used to run a successful motorcycle shop, and had a young family. I had the pleasure of going on holiday and to the Alzheimer’s Disease International conference in Perth, Western Australia, last year with Chris, Jayne and Kate.

I strongly recommend their story to you. I have no idea what’s in it.

Labour peer Lord Mandelson said famously once, ‘I’m a fighter, not a quitter”. Whilst I don’t particularly like aggressive battle analogies such as ‘the war against dementia’. I think this unique documentary will also share a sense of the grit and optimism of Chris and family, as well as their to-be-expected fears of the future.

I have a philosophy that ‘anything can happen to anyone at any time’ – and as such it’s not how you fall, but how you get up again, which is the true measure of you. I think how Chris and family have taken head-on his diagnosis of mixed dementia will be informative and educational for many, not least for members of the medical profession whose ability in this area could itself be much improved.

 

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The biggest risk is the future

Steve Hilton

As the neverendum talk perhaps is beginning to wind up, both sides in the European referendum debate are getting their closing speeches to invite you to use your vote in the UK to decide on EU membership.

This week, it was a chance for Steve Hilton, former advisor to the current Prime Minister David Cameron MP, to trot out the standard Brexit arguments. One of them, he emphasised at one point, is: “The biggest risk is the future.” I politically have much more in common with Steve Milton from Innovations in Dementia – though that other Steve isn’t fond of Mr ByeRight T-shirts.

Of course, it is impossible to make the future fool-proof. Dementia is the most feared condition in adulthood, it appears, and it is standard practice for national and international Big Charity to prey on this fear to raise funds. This shock doctrine, in combination with the “one last push” from tabloids such as the Daily Express, is only let down by the harsh reality of the actual scientific evidence.

This negative result about bapineuzumab for mild to moderate Alzheimer’s disease in two global, randomized, phase 3 trials, for example, was only published officially about a fortnight ago.

sneaked out

But the mood music of the press release about this drug from the Alzheimer Association in 2012 was somewhat different. Money is incessantly being pumped into this particular area in dementia.

As the Alzheimer Association press release says,

“The urgency is clear. By midcentury, care for people with Alzheimer’s will cost the U.S. more than $1 trillion every year. This will be an enormous and unsustainable strain on the healthcare system, families, and federal and state budgets. Better treatments and prevention strategies are absolutely necessary to reduce the financial and personal toll the disease takes on individuals, families and the healthcare system now and in the immediate future.”

Big Charities deliberately ramp up the fear to encourage you to fund raise for dementia. This is particularly unfortunate in the UK where a big ‘cure for dementia’ has actually not been forthcoming, whereas social care and intermediate care funding have been on its knees meaning that many adult patients cannot get discharged in a timely way from acute hospitals. This predictably is ruining the patient and carer experience for many. It’s been estimated that 30% at least of all adult admissions for medicine involve someone with dementia.

The fear of the diagnosis can mean that someone, or his or her own friends and family, might delay seeking out an official diagnosis of dementia. I feel, however, there has been a substantial, if not complete, turnaround in societal attitudes towards dementia in England through initiatives such as ‘Dementia Friends’ from the Alzheimer’s Society. But national campaigns are unable to eliminate stigma, prejudice, discrimination and outright bigotry.

Closing the diagnosis gap was not simply down to a reluctance of general practitioners to diagnose dementia, although general practitioners were often blamed publicly for this. Alzheimer’s Scotland at the beginning of June are about to debate whether diagnosis and management for dementia should take place in primary and secondary care, but the mere title of this debate is a huge insult to patients. Patients should be able to choose the venue of where this discussion takes place – it should be beyond the power of professionals to choose where this diagnosis and post-diagnostic support takes place, whatever the actual answer to the question might be.

Take for example the 430,000 people living in care homes. A substantial proportion of them will be living with a dementia such as Alzheimer’s disease, and it would help to meet their care needs if a carer knew this. For example, a care home resident may not be able to remember some interactions he has had with a carer, or may not be able to remember whether he has taken his medication that morning.

Or, take a frail lady who falls over with a subsequent acute admission to a NHS hospital. She might be given a CT scan showing volume loss of brain, and with a background of blood results not explaining cognitive problems and a history of worsening memory problems, and it might be a case for a diagnosis of dementia to be approached.

Courage to face one’s fears is a pervasive strand, whether you’re a recipient or provider of care services. Courage involves making a decision, often in the face of some fear, about the future. Indeed, cognitive neurology research has now consistently shown that one of the cognitive symptoms of people with dementia might in fact be a lack of awareness of problems, or indeed a specific lack of ability to predict forward into the future. This interesting phenomenon is called ‘prospection‘, and future research into this area would be valuable.

So, I feel Steve Hilton is right in the sense that the ‘biggest risk is the future’. But having a diagnosis of dementia is ‘not a death sentence’, in that many people with dementia can live as well as possible for many years with the right care and support. Planning might not just be in care but also in financial and legal affairs. It is said that facing the future is easier in dementia once you finally have an explanation, such as for worsening memory problems. But dementia is not just about memory.

A big risk for people with dementia ‘suffering’ is people with dementia suffering from never-ending cuts to the NHS and social care. That is the reality of the situation, and it is time Big Charity campaigned on that too. Disappointingly this week, there was no representation of people living with dementia giving a talk at the global #WHA69 summit, although they was no shortage of the usual hobnobbers bigging up the successful political leadership. But it’s worth noting that some people would not have had ‘seats at the table’ at all had it not been for certain people with dementia who had put them there.