Tag Archives: living with dementia

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Carers are like gold dust for living better with dementia

g d

According to Carers UK in May 2014, the 2011 Census figures for the UK showed an 11% rise in the number of carers since the last Census in 2001 – increasing by over 620,000 to 6.5 million in just 10 years. Under this definition, “carers” provide unpaid care by looking after an ill, older or disabled family member, friend or partner.

I recently found myself in such a caring rôle, unexpectedly so. Despite my medical training, or possibly even because of it, I found myself wholly unprepared for it. I must say that, like most carers, it brought me even close to the ‘care recipient’ in question; it was incredibly hard work, physically and emotionally exhausting, but very (non financially) rewarding.

When I was rung up by the North London Carers’ Society which provides support to people such as me, I remember being surprised being referred to as a ‘carer’. This was not out of shame, mind you. I just think that, like many things in life, I had not expected this ‘to be me’. But, as I do keep reminding myself, absolutely anything can happen to anyone at any time.

In my ‘day job’, I am an unpaid analyst of policy both nationally and internationally in dementia. This does not bring me to any conferences. I note recently a flurry of people with lived experiences complaining about such conferences, but as such I would relish the chance to be invited to one personally.

But it has struck me how it would be foolish to try to airbrush out of the discourse policy specialists and carers in discussing living better with dementia. And I feel certain things have to be said for sake of clarity.

A general longstanding principle about wellbeing is that somebody else’s wellbeing can depend upon your wellbeing. This means that if you’re physically, mentally or socially content, this will rub off on somebody close to you. The converse also happens to be true – if you’re physically or emotionally exhausted, this will rub off on the closest to you too.

Similarly, the legitimacy of your human rights depends on the legitimacy of others to exert their human rights. The human rights of a person with dementia and a carer are entirely complementary, in the same way that my freedom of expression might conceivably impact on your right to privacy.

But there are other important drivers for not ignoring the carers.

In England and Wales, since 2009 particularly, on the publication of the seminal report of Prof Sube Banerjee on the need to decrease the number of inappropriate prescriptions for anti-psychotics, and as a stated policy aim in the national strategy ‘Living well with dementia’, there has been huge success in this area of policy. A large part of this has been for professional staff to seek out the reasons why somebody might be agitated or anxious, and providing person-centred care? This is now being borne out by much meticulously conducted research. A person providing care, whatever the official job description, is a ‘carer’. The clue is very much in the name.

A strict interpretation of the jurisprudence would provide that only the person living with dementia could or should make a decision, and that international human rights in fact trump a domestic notion of legal capacity. The reality is that some people with dementia which has far progressed are unable to communicate their decisions, and this is particularly problematic if this lack of communication impacts on health and wellbeing.

It would be fine to argue that in an ideal world everyone can make their decisions in tricky situations known in advance, but the reality is that you cannot possibly anticipate every scenario in advance. Ideally, there’s a school of thought, however, that everyone should have some form of advance directive; for example in anticipation of a force majeure event such as a road traffic accident? And the further reality is that many people in England and Wales, and presumably other jurisdictions, with dementia have not actually been given a formal diagnosis of dementia. Many people enter hospital without a diagnosis of dementia only to be given one, and then can’t even be deemed to be safely discharged to their own home. They often can from that point go to a residential setting, or indeed die in hospital. But the law on capacity in England and Wales is, diplomatically put, a “good broad brush attempt”; we do know, for example, that in certain types of dementia a person can meet the legal test for capacity, but be making wildly abnormal types of decision; an advance direction might mitigate against this problem.

Carers, however so defined but invariably sons, daughters, husbands or wives, have a crucial further rôle to play on the admission of a person with dementia to a care setting such as hospital or hospice. Knowledge and information from carers can be invaluable in shared decision making about care; and it is impossible to know what the background cognition of anyone is without asking somebody close to him or her.

At one extreme, I have seen carers talk on behalf of people with dementia with them present; or carers ‘hog’ bulletin boards. But at another extreme, a discourse without carers is not adequate either. This is literally a case of practising what you preach, if you indeed believe that ‘no decision about us without all of us‘.

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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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Dementia friendly supermarket checkouts are offensive and should cease now

checkout

There are many burning issues in English dementia policy. One is mitigating against a high number of low quality and unreliable diagnoses of dementia due to poorly trained staff and inadequate resources in the system overall. Another is the poor coordination of care following diagnosis, due to the haphazard partial and inadequate roll out of anything appearing like integrated or whole person care.

The implementation of dementia friendly checkouts is yet another example of English policy having taken route which appears to have as its objective enhancing the brand profile of contributors from the voluntary sector, rather than genuinely enhancing the quality of life of people with dementia or carers. These are checkouts with huge banners with the word ‘dementia’, and literature from a particular source explaining about dementia.

How this situation has arisen is easy to explain relatively, however. In the name of ‘dementia awareness’, people have clearly abused the well meaning intention of ‘Dementia Friends’. Public education of dementia was desperately needed in the UK, is a global aspiration, and was indeed signposted in the 2009 English dementia policy document.

The 2009 English dementia policy document, the only five year strategy to date from the Department of Health, was published by the Department of Health. It was called ‘Living well with dementia’. There have been piecemeal policy documents annually, but it is recognised that the follow up to this five year strategy has not been published yet.

Unlike in cancer, there is no worked up care pathway. Cancer Research UK has made great strides in producing such a document for cancer. Cancer, like dementia, is an important long term condition where timely diagnosis, and encouraging people live to better is a priority. Cancer benefits from some effective medical and surgical treatments which not only have an effect on symptoms but on disease progression.

Justice delayed is justice denied. In cancer, it is well known that the provision of clinical specialist nurses have vastly improved the wellbeing of patients particularly in end of life care, such as from Marie Cure or Macmillan. There is no such provision of such nurses in dementia. Currently Admiral nurses, provided by Dementia UK, are finding it tough to get commissioned despite widespread demand. The lack of promotion of them in recent policy documents is not justified given the huge literature for them proving beneficial outcomes. They should be in the second English dementia strategy which has been delayed without any explanation. Justice delayed is justice denied.

The UK instead is focusing on ‘dementia friends’. How the number of Dementia Friends suddenly shot up from 700,000 to 1 million is a bit of a mystery, save for the fact that this increase in numbers happened to coincide with an online registration exercise. The danger of course was that people were using ‘Dementia Friends’ as a tickbox exercise merely.

Another indication that a tickbox mentality was being applied to ‘Dementia Friends’ was the large numbers of people, including commissioners notably, who kept on referring to the provision of information sessions as ‘training’. It is categorically stated in all official communications from the Alzheimer’s Society that it is not training. The policy reason for this is that nobody responsible wants to promote inadequate training for dementia care settings, where great strides have instead been made for example in the development of the ‘care certificate’.

The ‘Dementia Friendly’ checkout is striking in the context of the worldwide aims of dementia friendly communities. Supportive communities, howeverso defined, are meant to be inclusive and accessible to all. They are meant to be non stigmatising.

One of the aims of ‘Dementia Friends’ is indeed to see beyond the diagnosis. People are therefore not labelled by their diagnosis. It would be hard to conceive of a supermarket queue for ‘Learning difficulties’, ‘Depression’ or ‘First episode psychosis’.

When Mick Carmody or Kate Swaffer, both leading members of Dementia Alliance International (the only peer group of people living with dementia internationally and peak body), get told, “But you don’t look as if you’re living with dementia”, they have been known to respond, “That’s very interesting – but do tell me, what does a person living with dementia look like?”

It is actually very rare for someone with dementia to be living only with dementia. Co-morbidity is common. If you had dementia and depression, which queue would you join? The dementia friendly queue or the depression friendly queue?

When I was at the Alzheimer’s Disease International conference in Australia earlier this year, one of the speakers asked all people with dementia to stand up. Citizenship for people with human rights is a major drive for policy worldwide, and a principle aim of advocacy based on human rights is to protect people with dementia and carers against degrading treatment. This has been enshrined legally in some form or other since Roman times.

Asking people with dementia to stand up in a theatre is making a spectacle of people’s living in an undignified manner. Kate Swaffer, Co-Chair of Dementia Alliance International, even mentioned in her plenary speech how offensive it was.

It is highly unlikely that people living with dementia want to ‘out’ their diagnosis in a shopping queue, when many will be wanting to go about the life as normally as possible. Could you imagine the tannoy announcement, “Will all people with Alzheimer’s disease go to checkout number 9 please?”

As it happens, the vast majority of people living with dementia do not want to join that queue and hate the idea.

Dementia represents about 128 different conditions, depending on how you count them, ranging from Alzheimer’s disease at one end (very common) to anti-potassium antibodies paraneoplastic dementia (relatively rare). As dementia, a progressive condition affecting the brain, can in theory affect any of the thinking functions of the brain, in theory it is possible that any of the cognitive functions ranging from attention to higher order visual processing can be affected. So that is what could be in theory expected in a ‘dementia friendly checkout’.

It is hard to say why dementia friendly checkouts have been greeted with such enthusiasm. Certainly any reasonable leaders in the NHS should not associate themselves with such an unintelligent offensive policy. English dementia policy and their leaders should not be for the promotion of themselves at the expense of the wellbeing of people living with dementia or carers.

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Like Matisse's artwork, living well with dementia is a triumph of hope over pessimism

You can feel it from start to finish.

Matisse is innovation all over.

It’s about experimenting.

It’s about not being frightened of failure.

It’s about not worrying what people think of you.

It’s about cracking a few eggs to make an omelette.

It was a delight to go to London SE1 “Tate Modern” to see “Henri Matisse: The Cut-Outs” this afternoon.

A dementia expert is reputed today as saying that Alzheimer’s disease impacts ‘not only color, awareness and your ability to process [things] but also your field of vision.’

‘By then your brain says “I can’t deal with this data coming from two eyes” and it says “I’ll just pay attention to one.”

‘You lose all depth of perception, you’re not able to figure out [if things are] three-dimensional or two-dimensional.’

And indeed it’s scary stuff.

I am unable to bring you the image as it would be a breach of copyright.

I object very strongly to these scare tactics.

But they’re utterly in keeping with the “timebomb” school of reporting of dementia.

The facts are as follow.

Vision is not affected in early Alzheimer’s disease as the part of the brain which is typically affected are the hippocampus and entorhinal cortex, a part of the brain near the ear.

The visual areas are somewhere completely different.

Alzheimer’s disease is the most common type of dementia worldwide, though there are about 100 different types of dementia.

There might be a case for saying vision is affected in some other types of dementia, for example visual hallucinations in diffuse lewy body disease or in 3D visual perception as in posterior cortical atrophy.

But this is completely different.

The advertising campaign is in fact disgusting, but entirely in keeping with how corporate-behaving charities can resort to shock-doctrine type tactics.

In contrast, Matisse is a triumph of hope over pessimism.

Matisse 1Matisse 2Matisse 3Matisse 4

It’s brilliant that, while Matisse’s own movement was severely limited, in “The Acrobats” he was able to depict bodies in extremes of motion.

The assistants would clamber around the giant pictures with pin cushions and hammers, realising Matisse’s vision.

The colour was sensational, at a time when this was not the “done thing” in art at the time.

In fact, Matisse epitomises everything which the doom-mongers, sometimes ably assisted by some dementia charities and the media, portray dementia to be.

Living well with dementia for me is about the assets-based approach.

It’s about celebrating what people can do as individuals, rather than what they can’t do.

It’s not about propelling our fellow citizens into an early grave.

I know which world I prefer to inhabit.

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My statement in response to Norman Macnamara's status this morning

For those of you who haven’t seen it, this is Norman’s statement from this morning on Facebook.

“Good morning all,

Yesterday was a hard day for many reasons, but i stood my ground!!And On more than one occasion !!!!. I was questioned about the GPS Systems, the ethics of it and how many people we will reach and are reaching now. Questions were raised about how some people thought the Purple Angel campaign was just a one man band and will fizzle out after my demise (Their words not mine!!) and the locality of the reach we have!!

This hurt as i felt it was undermining all the great work you have done around the world, something they are having trouble grasping!! Being as protective of you all as i am, i let them know, in no uncertain terms how STRONG we are, how BIG we are and how our Arms all reach around the globe in complete unison and that i will not, or will ever, have people talking (Gossiping) about something they quite clearly no nothing about!!!

Days like this will come, i know this, and i can deal with it without favour or fortune ( i fight a bigger battle of my own as you well know) but please know i will always defend the work we do , you do, and everybody does in this wonderful organisation. For all who like a bit of a read this is what i wrote in my feed back to all attendees yesterday when i arrived home last night, much love to all and always remember
“Together We Are Strong”
XXXX

FEEDBACK LETTER

Good evening all, just a little feedback from todays meeting. As a person “Living with Dementia” can i just say a huge thank you to each and every one of you for your attendance today under such difficult circumstances regarding the weather.

Now, onto my feedback, after the “Lively” discussion Ian Sheriff and myself had regarding the locality of what we do under the banner of the Purple Angel Campaign i would just like to clear a couple of things up. As much as Ian pressed what we do is a local thing just in Torbay, nothing could be further from the truth.

The Purple Angel Campaign is a Global movement with over 100 Dementia Ambassadoors worldwide. We have huge swathes of the UK covered and reading the material we provide for free, the links at the bottom of this e mail me show just this. The Urban MYTH that all this will collapse when i become worse is just that, and URBAN MYTH. We have Succession protocols in place and not only that the 100 ambassadors i talk about the majority also have their own teams to take this forward when i am long gone. I will say passionately, that whilst others have been discussing this, talking about oty for months and the ethics of it, doing research will last months and months, we have just got on with it and got the job done, and in the process of carry on doing so.

As for the GPS `s being a local thing, this is also UNTRUE!! The call centre in Torbay is now a NATIONAL CALL Centre for the whole of the uk. The GPS`s are being posted to those who request them from the 1st of Feb 2014 and are being activated ALL over the UK as we speak. They will begin to save lives The call centre employees are all ex Dr`s, Nurses, Firemen and paramedics who are all versed in Triage and emergency situations !! All protocols have been passed by the NHS and devised by Devon and Cornwall police. How other forces respond will have to be worked out at their own local level but these are now “LIVE and “Active ” across the UK

Without having what we call a sideways dig at anybody, the Alzheimers society are not the Dementia police and are not the only ones who can make a difference to people with dementia and their carers!! And certainly not everything has to be okayed by them. I was so happy to have the support there today of my fellow Purple Angel dementia ambassador Hilary Cragg who is also a solicitor and i was only to happy to hear that she also is mystified by the “Ethics ” argument regarding GPS SYstems. Nobody is forcing these on anybody, and if anybody gets to the late stage where they aren’t responsible to say yes or no then there is usually a Power of attorney involved or a need for care, it really is as simple as that and its the media and the general public who are making hard work of it as usual!!

That said we dont have to PROVE to anybody what we are doing, and whatever the outcome will just carry on doing what we do best. The invitation to ALL of you is here to ask any questions you want too and our offer of help still stands to all who need it. I hope the weekend is a lot kinder to you than it was to us all today.

Best wishes, Norrms and family”

I would like to make a brief statement on this status.

I have met Norman and Elaine:

Norman

Elaine

The idea that Norman is a ‘one man band’ is science fiction.

My personal Facebook is populated full of ‘Purple Angels’ who genuinely adore Norman.

Norman is in fact what management gurus would call a ‘charismatic leader’. This means that he has a vision; he has followers; he’s communicating his vision; and followers believe in his vision.

I think it’s very difficult to find a more relevant stakeholder opinion that that of the person living with dementia.

I think, in fact, and many agree with me, as an academic who has devoted a lifetime to dementia, that they should be at the heart of all service provision decisions about strategy.

I also think they should shape the direction and tactics of our global research strategy.

If anyone would like to discuss with me rationally the ethics and law of wandering mitigation, I am happy to do so. I am a member of the World Neuroethics Society, and have been awarded my Master of Law from the University of Law here in London.

Using words such as ‘demise’ can only be hurtful. As somebody who had a cardiac arrest in 2007, I should like to remind people that anything can happen to anyone at any time.

My aspiration to make life better for those living with dementia has been obstructed by much promotion and spin from those people who have pursuing their own agenda often with a cruel aggression. I salute Norman and his Purple Angels for standing his ground.

All I can say to Norman is that at first they ignore you, then they try to discredit you, and then they attack you.

Norman’s reaction yesterday confirms for me only one thing.

That Norman and Elaine, and the Purple Angels, have in fact won the “battle”. And thanks to them we have made huge advances in promoting living well with dementia.

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