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Awareness about dementia is not just public ignorance: it's also critical to living with dementia

Often I’m struck about how the ‘awareness’ focus in dementia is making people in general public simply knowledgeable that dementia exists in 800,000 people in the UK.

But awareness about symptoms in persons living with dementia themselves is also a critical component, and cannot be factored out of the debate in current policy drive to identify the missing people undiagnosed dementia.

Policy wonks without a scientific or clinical training in dementia have become very adept at blaming GPs for underdiagnosis of dementia, but people who have some knowledge of this specialist field know that the situation is far more complicated. Other issues include perhaps a reluctance of people to seek a diagnosis because of the life-changing impact that such a diagnosis might make. There may also be nuances between different ethnic or social groups in society which might act as ‘barriers to diagnosis’. Also, some persons with dementia may be genuinely unaware of the extent of their own symptoms.

To be fair, it’s impossible for anyone who doesn’t have a diagnosis of a dementia to understand completely what living with dementia really means. Norman McNamara, who was diagnosed with dementia a few years ago at the age of fifty comments: “What can be worse than having dementia?” “It’s knowing you have dementia – it’s like having two diseases, having it, and knowing you have it.”

This is a helpful description of ‘insight’, that people with dementia can have into their own conditions. In this video, Norman reports symptoms which he knows are getting worse, and which knows are visibly getting worse to his wife, Elaine. Patients with neurological disorders are often partially or completely unaware of the deficits caused by their disease. This impairment is referred to as “anosognosia”, and it is very common in neurodegenerative disease, particularly in frontotemporal dementia.

The mechanisms underlying this phenomenon are generally poorly understood. It’s likely, however, memory for facts and events likely plays an important role. In addition, the frontal lobe systems are important for intact self-awareness, but the most relevant frontal functions have not been identified. Motivation required to engage in self-monitoring and emotional activation marking errors as significant are often-overlooked aspects of performance monitoring that may underlie anosognosia in some patients.

Another common type of dementia is a behavioral variant frontotemporal dementia (bvFTD), characterised by a slow change in personality and behaviour, is often unnoticed by the individual himself or herself. Loss of insight is a prominent clinical manifestation of this condition, but its characteristics are poorly understood. Indeed, Mario Mendez and Jill Shapira reported in 2005 some research into what appeared to cause this lack of insight in this particular condition. They found that it is associated with low blood flows in the right hemisphere, particularly the frontal lobe, the part of the brain near the front of the head.

For the most common type of dementia, the dementia of the Alzheimer type, the generally widely-held belief is that persons experience a progressive loss of insight as the severity of dementia increases. People with this type of dementia can get particularly forgetful. Most people aren’t fully aware of their impaired abilities, which doctors describe as a “lack of insight”. This can put them at risk of injury from unsafe actions and also make them less willing to seek and comply with treatment.

However, understanding a person’s level of insight can help doctors and carers better manage their treatment and daily needs, but gauging insight can be difficult. The usual approach is to ask patients questions about their current abilities and compare their answers with those from an ‘informant’, which is usually a family member or someone else close to the patient.

But this method isn’t ideal, as it relies on the informant’s opinion of the patient’s abilities, which can be swayed by factors such as how well they know the patient and how distressing they find their behaviour.

Norman often states that ‘once you’ve met one person with dementia, you’ve met one person with dementia’. This means that for any one person with dementia there’ll be different extents of symptoms of illness, different extents of abilities, different levels of insight, and therefore different perceptions of ‘living well with dementia’. So, it is arguably difficult to compare whether one type of dementia is ‘worse’ than other?

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Who were the biggest winners and losers of the G8 dementia summit? My survey of 96 persons without dementia

G8

Background

The G8 summit on dementia was much promoted ‘to put dementia on top of the world agenda’.

It is described in detail on the “Prime Minister’s Dementia Challenge” website.

I went only last Monday to Glasgow to the SDCRN conference retrospective on the G8 dementia. It was a sort-of debrief for people in the research community about what we could perhaps come to expect. And what we’d come to expect, just in case any of us had thought we’d dreamt is was the idea of identifying dementia before it had happened or just beginning to happen and stopping it in its tracks then and there with drugs.

This is of course a laudable aim, but an agenda utterly driven by the pharmaceutical industry. My philosophy (not mine uniquely) “Living well in dementia” is called “non-pharmacological interventions” to denote a sense of inferiority under such a construct.

This slide had a lot of criticism

Aim

There has never been a media report on people’s views about the G8 dementia summit.

There has never been an analysis of the messaging of this summit in the scientific press, to my knowledge.

This study was conducted as a preliminary exploratory study into the language used in a random sample of 75 articles in the English language.

Methods

I completed a survey of reactions to the G8 dementia summit held last year in December 2013. I recruited people off my Twitter accounts @legalaware and @dementia_2014, and there were 96 respondents. Responses to individual items varied from 63 to 96.

I used ‘SurveyMonkey’ to carry out this survey. With ‘SurveyMonkey’, you cannot complete the survey more than once.

(I have also already collected 19 detailed questionnaire responses from Clydebank which I intend to write up for the Alzheimer Europe conference later this year, also in Glasgow. And also six people living with dementia also responded; and I’ll analyse these replies separately. I reminded myself by looking at the programme of the summit again what the key topics for discussion were – drugs, drug development and data sharing, with a sop to innovations and provision of high quality of information. It is perhaps staggering that there has been no detailed analysis of who benefited from the G8 dementia, but given the nature of this event, the media reportage and the events of my survey, this retrospectively is not at all surprising to me.)

Exclusions

Persons with dementia were directed to a different link (of the same survey.)

Results

The results encompass a number of issues about media coverage, the relative balance of cure vs care, and who benefited.

Media coverage

Overall, most people had not caught any of the news coverage on the TV (56%) or radio (55%). But most had caught the coverage on the internet, for example Facebook or Twitter (66%). 87% of people said they’d missed the live webinar. It was possible to answer my survey without having caught of any of the G8 seminar, however.

So what did people get out of it and what did they expect? Most people did not think the summit was a “game changer” (53% compared to 16%; with the rest saying ‘don’t know’), although the vast majority thought the subject matter was significant (82%) (n = 90).

Therefore, unsurprisingly, a majority considered the response against dementia to be an opportunity for policy experts to produce a meaningful solution (58%). However, it’s interesting that 24% said they didn’t know (with a n = 90 overall.)

In summary, they had high hopes but few thought it was a good use of a valuable opportunity to talk about dementia.

Many of us in the academic community had been struck in Glasgow at the sheer “terror” in the language used in referring to dementia. A large part of the media seemed to go for a remorseless ‘shock doctrine’ approach. Prof Richard Ashcroft, a medical law and bioethics expert from Queen Mary and Westfield College, University of London, wrote a very elegant piece about this, and his personal reaction, in the Guardian newspaper.

In terms of language, the respondents were consistent in not viewing the response against dementia as a “fight” (61%), a “war” (84%), a “battle” (72%) or an “epidemic” (70%) (n ranging from 83 to 86). 56% of people considered it unreasonable to speak of “turning the tide against dementia”. In terms of personal reactions, 82% considered themselves not to be “shocked” by dementia.

91% of people thought it was appropriate to talk of ‘living with dementia’ in the early stage (n = 85), but 82% of people did not think it was more appropriate to talk of people ‘suffering from dementia’ at this early stage (n = 86). In retrospect, I should’ve asked whether the appropriate phase was ‘living well with dementia’, so I suppose nearly 91% endorsing ‘living with dementia’ at all is not surprising. I have previously written about the use of the word “suffering”, as it is so commonly used in newspaper titles of articles of dementia here, though I readily concede it is a very real and complex issue.

living well suffering

The opportunity presented by the G8 dementia summit: cure vs care

Despite all the media hype and extensive media coverage of the G8 dementia summit, 70% of people “did not feel excited about the world or country’s response to dementia” (n = 86).

But it is possibly hard to see what more could have been done.

The presentation by Pharma and politicians for their dementia agenda was extremely slick. This may be though due to a sense of politicisation of the dementia agenda, a point I will refer to below.

Q21

Early on in the meeting, World Health Organization Director-General Magaret Chan reminded the delegates – including politicians, campaigners, scientists and drug industry executives – how much ground there was to cover.

“In terms of a cure, or even a treatment that can modify the disease, we are empty-handed,” Chan said.

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS, and we should be just as resolute today,” Cameron said. “I want December 11, 2013, to go down as the day the global fight-back really started.”

It is therefore been of conceptual interest as to whether dementia can be considered in the same category as other conditions, some of which are obviously communicable. In my survey, people reported that that, before the summit, they would not have considered dementia comparable to HIV/AIDS (88%), cancer (70%), or polio (92%) (n = 86).

This is interesting, as a common meme perpetuated also by certain parliamentarians (who invariably spoke about Dementia Friends too) was that the same sort of crisis level in finding a cure for dementia should accompany what had happened for AIDS decades ago.

Biologically, the comparisons are weak, but it was argued that AIDS, like dementia now, suffered from the same level of stigma. Dementia, however, is an umbrella term encompassing about a hundred different conditions, so the term itself “a cure for dementia” is utterly moronic and meaningless.

Also in my survey, 67% of people reported that they did not feel more excited about the future of social care and support for people living with dementia (n = 85), and virtually the same proportion (66%) reported that they did not feel excited about the possibility of a ‘cure’ for dementia (defined as a medication which could stop or slow progression) (n = 85).

This reflects the reality of those people living in the present, perhaps caring for a close one with a moderate or severe dementia.  It had been revealed that budget cuts have seen record numbers of dementia patients arriving in A&E during 2013. Regarding this, it was estimated that around 220,000 patients were treated in hospital as a result of cuts in social care budgets, which left them without the means to get care elsewhere.

It is known that the government has cut £1.8 billion from social care budgets, which is in addition to the pressure being applied to GP surgeries. In 2008 the number of dementia patients arriving in A&E was just over 133,000. The concern is that the Alzheimer’s Society, while working so close to deliver “Dementia Friends”, is not as effective in campaigning on this slaughter in social care as they might have done once upon a time. Currently, we now have the ridiculous spectacle of councils talking about dementia friendly communities while slashing dementia services in their community (as I discussed on the Our NHS platform recently).

Why Big Pharma should have felt the need to breathe life into the corpse of their industry for dementia is interesting, though, in itself. Pharma obviously is ready to fund molecular biology research, and less keen to fund high quality living well with dementia, and there is also concern that this agenda has pervasively extended to dementia charities where “corporate capture” is taking place. A massive theme of the G8 dementia summit was in fact ‘personalised medicine’. For example, there is growing evidence that while two patients may be classified as having the same disease, the genetic or molecular causes of their symptoms may be very different. This means that a treatment that works in one patient will prove ineffective in another. Nevertheless, it is argued the literature, public databases, and private companies have vast amounts of data that could be used to pave the way for a better classification of patients. According to my survey, despite ‘personalised medicine’ being a big theme of the summit, strikingly 66% felt that this was not adequately explained. There’s no doubt also that the Big Pharma have been rattled by their drugs coming ‘off patent’ as time progresses, such as donepezil recently. This has paved the way for generic competitors, though it is worth noting that certain people have only just given up on the myth that cholinesterase inhibitors, a class of anti-dementia drugs, reliably slowed the progression of Alzheimer’s disease in the majority of patients.

Who benefited?

In terms of who ‘benefited’ from the G8 dementia summit, I asked respondents to rate answers from 0 (not at all) to 5 (completely).

Research First of all, it doesn’t seem researchers themselves are “all in it together”. For example, these are the graphs for researchers (molecular biology) (n = 68) and researchers (wellbeing) (n = 68), with rather different profiles (with the public perceiving that researchers in molecular biology benefited more). This can only be accounted for by the fact there were many biochemical and neuropharmacological researchers in the media coverage, but no researchers in wellbeing.

37 38

Pharmaceutical industry But the survey clearly demonstrated that the pharmaceutical industry were perceived to be the big winners of the G8 dementia (n = 68).

Ministers are hoping a government-hosted summit on dementia research will help boost industry’s waning interest in the condition, and to some extent campaigners have only themselves to blame for pinning their hopes on this one summit.

The G8 Summit came amidst fears the push to find better treatments is petering out, and it is still uncertain how effective some drugs currently in Phase III trials might be, given their problems with side effects and finding themselves into the brain once delivered.

39

And the breakdown is as follows:

table

Charities  The survey also revealed a troubling faultline in the ‘choice’ of those who wish to support dementia charities, and potential politicalisation of the dementia agenda. It has been particularly noteworthy that this recent initiative in English policy was branded “the Prime Minister Dementia Challenge”, and ubiquitously the Prime Minister was (correctly) given credit for devoting the G8 to this one topic.

A previous press release had read,

“Launched today by Prime Minister David Cameron, the scheme, which is led by the Alzheimer’s Society, people will be given free awareness sessions to help them understand dementia better and become Dementia Friends. The scheme aims to make everyday life better for people with dementia by changing the way people think, talk and act. The Alzheimer’s Society wants the Dementia Friends to have the know-how to make people with dementia feel understood and included in their community.. By 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England today and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Each Dementia Friend will be awarded a forget-me-not badge, to show that they know about dementia. The same forget-me-not symbol will also be used to recognise organisations and communities that are dementia friendly. The Alzheimer’s Society will release more details in the spring about what communities and organisations will need to do to be able to display it.”

Therefore, the perception had arisen amongst the vast majority of my survey respondents that large charities were big winners from the G8 dementia summit. This is perhaps unfair as there was not much representation from other big charities apart from the Alzheimer’s Society, for example Dementia UK or the Joseph Rowntree Foundation.

I feel that this distorted public perception in the charity sector for dementia is extremely dangerous.

And this finding is reflected in the corresponding graph for ‘small charities’. Small charities were not represented at all in any media coverage, save for perhaps ambassadors of smaller charities there in a personal capacity at the Summit.

The numbers sampled for their views on large and small charities were both 67.

large and small charities

Paid carers and unpaid caregivers 

The major elephant in the room, or maybe more aptly put an elephant who wasn’t invited to be in the room at all, was the carers’ community.

Only recently, for example, it’s been reported from Carers UK that half of the UK’s 6.5 million carers juggle work and care – and a rising number of carers are facing the challenge of combining work with supporting a loved one with dementia. The effects of caring for a person with moderate or severe dementia are known to be substantial, encompassing a number of different domains such as personal, financial and legal. It is also known that without the army of millions of unpaid family caregivers the system of care for dementia literally would collapse.

These are the graphs for paid (upper panel) and unpaid (lower panel) carers and caregivers (n = 65 and n = 66 respectively), with the most common response being “not at all benefiting”.

caregivers

Politicians

But when asked if the politicians benefited, the result was very different.

Admittedly, few politicians were in attendance from the non-Government parties in England, and none from the main opposition party was given an opportunity to give a talk.

Both Jeremy Hunt and David Cameron gave talks. There is clearly not a lack of cross-party consensus on the importance of dementia, evidenced by the fact that the last English dementia strategy ‘Living well with dementia’ was initiated under the last government (Labour) in 2009.

The overall impression from 64 respondents to this question that politicians benefited, and some thought quite a lot.

politicians

Corporate finance A lot of discussion was about ‘investment’ for ‘innovation’ in drug research. Andrea Ponti is a highly influential man. He has been Global Co-head of Healthcare Investment Banking and Vice Chairman of Investment Banking In Europe of JPMorgan Chase & Co. since 2008. Mr. Ponti joined JPMorgan from Goldman Sachs, where he was a Partner and Co-head of European healthcare, consumer and retail investment banking, having founded the European healthcare team in 1997.

At the G8 dementia summit, Ponti advised that biotechnology and drug research can be a ‘risky’ investment for funders, rebalance of risk/reward needed. Ponti specifically made the point the rewards for investing in drug development had to be counterbalanced by the potential risks in data sharing (which are not insubstantial legally across jurisdictions because of privacy legislation).

Anyway, in summary, it was perhaps no surprise that my survey respondents felt that corporate finance were big winners of the summit (n = 65).

45

Persons with dementia And also for persons with dementia themselves?

One would have hoped that they would have been big winners according to my survey respondents, but the graph shows a totally different profile (with a minority of respondents rating that they benefited much.)

This is very sad.

66 answered this question.

The overall picture was this.

PWD1

And the breakdown of results was this.

PWD2

What will people do next?

Finally, it seemed as if the G8 Dementia Summit produced a ‘damp squib’ response with people in the majority neither more or less likely to donate to dementia charities (69%), donate to dementia care organisations (74%), get involved in befriending initiatives (72%), talk to a neighbour living with dementia or talk to a caregiver of a person living with dementia (58%), or get involved in dementia research (69%) (n varying from 73 to 78).

Limitations

Respondents were all in the UK, but the G8 dementia summit was clearly targeted in a multi-jurisdictional way.

It could be that there is huge bias in my sample, towards people more interested in care rather than Pharma. My follower list does include a significant number of people living with dementia or who have been involved in caring for people with dementia.

Conclusion

It would be interesting to know of any in-house reports from other organisations as to how they perceived they felt benefited from the G8 dementia, for example from patient representative groups, Big Pharma, carers and the medical profession. Pardon the pun, but the results taken cumulatively demonstrate a very unhealthy picture of the public’s perception in the dementia agenda in England, who calls the shots, and who benefits.

Given that this G8 dementia was to a large extent supposed to establish a multinational agenda until 2025, in parallel to the multinational nature of the response of the pharmaceutical industry, for those of us who wish to promote living well with dementia, it is clear some people are actually the problem not the solution.

This is incredibly sad for us to admit, but it’s important that we’re no longer in denial over it.

 

 

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Public engagement with science must be two-way: that's why persons with early dementia are so important

I spent some of this afternoon at the Wellcome Trust on Euston Road. Euston Road is of course home of the oldest profession, as well as the General Medical Council too.

I was invited to go there to discuss my plans to bring about a behavioural change in dementia-friendly communities. You see, for people with early dementia, say perhaps people with newly diagnosed dementia and full legal capacity, I feel we should be talking about communities led by people with early dementia.

The last few years for me as a person with two long term conditions, including physical disability, have really given me an urge to speak out on behalf of people who can become too easily trapped by being ‘medicalised’.

I have had endless reports of persons with dementia who have received no details about their dementia from the medical profession on initial diagnosis, and at worst simply given an information pack.

This is not good enough.

How we all make decisions is a fundamental part of life. When a person loses the ability to make decisions, it can be a defining moment – loss of capacity triggers certain legal pathways. Whilst the state of the law on capacity is quite good (through the Mental Capacity Act 2005), it is likely that further welcome refinements in the law on capacity will be seen through the current consultation on the said act.

I have been thinking about applying for a big grant to fund activities in allowing a discussion of decision-making in people with early diagnosis, the science of decisions, and what one might do to influence your decision-making (such as not following the herd).

I’ve also felt that quite substantial amounts of money get pumped into Ivory Tower laboratories on decision-making, but scientists would benefit from learning from people with early dementia regarding what they should research next, as much as informing people with early dementia what the latest findings in decisions neuroscience are.

Also, the medical profession and others are notoriously bad at asking people with dementia what they think about their own decision making. This ‘self reflection’ literature is woefully small, and this gap I feel should be remedied.

I simply don’t think that what scientific funding bodies do has necessarily to interfere with the NHS. I think a motivation to explain and discuss the science of decisions to stimulate a public debate is separable from what the NHS does to encourage people to live well with dementia. This debate can not influence what scientists do, but can influence what lawyers and parliament wish to do about capacity in dementia.

Persons can be encouraged to live well with dementia, and when they become ill they become patients of the NHS. Living well with dementia is for me a philosophy, not a healthcare target. If I can do something to promote my philosophy and help people, I will have achieved where many people in their traditional rôles as medical doctors have gloriously failed as regards dementia.

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Why I'm on a mission to explain the science of decisions to people living with mild dementia

As a person who is physically disabled, and who has a speech impediment due to a meningitis from 2007, I am more than aware of how people can talk down to you in a patronising way.

It’s why I am very sensitive about language: for example, even with the best intentions in the world, “dementia friendly communities” conjures up an intense feeling of ‘them against us’.

It’s really important to not do anything which can cause a detriment to any group of people.

If you happen to be living with a condition which could cause you to have difficulties, this is especially important.

A “dementia” might be a disability under the Equality Act, and the person you’re speaking to might not obviously to you be living with a disability – it’s a ‘so-called invisibility’.

disability

But – I’m deadly serious this. People shouldn’t be judged on what they can’t do. We all  have failings of some sort. People should be encouraged for what they can do whenever possible. I don’t, likewise, consider the need for policy to embark on ‘non-pharmacological interventions’ as if what I’m talking about is second fiddle: living well with dementia is a complete philosophy for me.

In any other disability, you’d make reasonable adjustments. I see the need to explain how decisions are made to people with dementia as absolutely no different, both under the Equality Act (2010) and morally for a socially justice-oriented nation.

The excitement about how ‘decisions’ are made was recently described in the book by Prof Daniel Kahneman, “Thinking fast and slow”.

How we hold information for long enough to weigh up the pros and cons fascinates me.

Kahnemann, and others, feel that there are two systems.

System 1 is fast; it’s intuitive, associative, metaphorical, automatic, impressionistic, and it can’t be switched off. Its operations involve no sense of intentional control, but it’s the “secret author of many of the choices and judgments you make”. System 2, on the other hand, is slow, deliberate, effortful. Its operations require attention. (To set it going now, ask yourself the question “What is 13 x 27?”

decisions2

Kahneman is a hero of mine as in 2002 he was awarded the Nobel Prize for economics, but he is essentially a cognitive psychologist.

In 2001, I was awarded a PhD from Cambridge for my thesis in decision-making in frontal dementia. I was the first person in the world to demonstrate on a task of decision-making that people with frontal dementia are prone to make risky decisions, despite having very high scores on standard neuropsychological tests and having full legal capacity.

Now, one coma later following my meningitis, I have done my postgraduate studies in law, and I have become fascinated by the rather arbitrary way in which our law has developed the notion of mental capacity, based on our ability to make decisions.

People with dementia can lose their ability to make decisions, so decision-making is a fundamental part of their life. As neuroscience and law straddle my life, I should like to make it my personal mission to explain the science of decision-making to people with full capacity, and who happen to have a diagnosis of dementia.

I am all in favour of a world sympathetic to the needs of people living with dementia, but this requires from us as a society much greater literacy in what the symptoms and signs of dementia are. I am not convinced we’re anywhere near that.

In the meantime, I think we can aim to put some other people in the driving seat, and they rarely get put in the driving seat: yes, that’s right, it’s time to engage people with mild dementia in the scientific debate about how decisions are made.

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Please take part in my survey on the G8 Dementia Summit 2013

It’s always struck me that there has never been much feedback about what the general public thought about the G8 dementia summit (“Summit”) held last year.

Information about this one-day conference is given here.

The Summit was being held at Lancaster House in London on 11 December 2013. Delegates include G8 Ministers, researchers, pharmaceutical companies and charities.

The summit aimed to agree what can be done to:

  • stimulate greater investment and innovation in dementia research
  • improve the prevention and treatment of dementia
  • improve quality of life for people with dementia

Even if you saw none of the coverage to do with this meeting, I’d be very grateful if you could complete my brief online survey about the Summit. It takes a few minutes to fill in, and contains only multiple choice questions.

ballot box

I’d be grateful if you wish to do this survey

if you’re an adult without a diagnosis of a dementia USING THIS LINK.

OR

I’d be grateful if you wish to do this survey

if you’re a person with a diagnosis of dementia, with full legal capacity USING THIS LINK.

All responses are completely anonymous.

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Copies of "Living well with dementia" are doing more cameos than Hitch

English film director Alfred Hitchcock (“Hitch”) made cameo appearances in 39 of his 52 surviving major films.

For the films in which he appeared, he would be seen for a brief moment boarding a bus, crossing in front of a building, standing in an apartment across the courtyard, or even appearing in a newspaper photograph.

This playful gesture became one of Hitchcock’s signatures; and fans would make sport of trying to spot his cameos.

As a recurring theme, he would carry a musical instrument — especially memorable was the double bass case that he wrestles onto the train at the beginning of “Strangers on a Train”.

In “The Birds”, as Melanie Daniels (Tippi Hedren) enters the pet shop, Hitch is leaving with two white Sealyham terriers.

This is a film of every single ‘Hitchcock cameo’.

Here are some recent cameos.

yet more copies

 

very nice photo Living wildGill

Full details about my book are on the Radcliffe website here.

Here are further ‘tweets of support’.

And above all…

motto

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It's time we talked about 'dementia friendly communities'

This could be the video from any corporate. The point is that the video contains very familiar concepts and memes which can be marketed very easily.

I have reviewed the development of the policy of ‘dementia friendly communities’ in the penultimate chapter of my book ‘Living well with dementia’.

The description of “dementia friendly communities” given by the Alzheimer’s Society is provided as follows:

“The dementia friendly communities programme focuses on improving the inclusion and quality of life of people with dementia… In these communities: people will be aware of and understand more about dementia; people with dementia and their carers will be encouraged to seek help and support; and people with dementia will feel included in their community, be more independent and have more choice and control over their lives.”

This definition doesn’t make sense to me as it ignores networks – networks (including social networks such as Facebook and Twitter) are particularly important to those whose physical or mental health might pose formidable barriers to being physically in any one place in a community.

But when you ask “what is a dementia friendly community?” inevitably the question becomes re-articulated “what constitutes a community, and what counts as it being ‘friendly’ to ‘dementia’?”

And immediately you see the problems. How large is a community? Or put another way what constitutes the boundaries of the community? In theory, a community could be members of a part of the Lake District, or the Square Mile. Being ‘friendly’ demands the question ‘how long is a piece of string’? Without some clarity, this construct is ‘motherhood and apple pie’ and a perfect tick-box vehicle for commissioners to demonstrate that they’ve done something about “dementia friendliness”.

But simultaneously shutting down a day centre will immediately take out any feel good factor of commissioning decisions, leaving people with dementia sold down the river.

And headlines such as this from today’s Guardian continue to make a complete farce of ‘dementia friendly communities‘:

social care cuts

And which dementia? There are about a hundred different causes of dementia, the most common one being globally Alzheimer’s disease, characterised typically in the early stages with real problems with learning and encoding new memories (and subsequent retrieval).

So it’s conceptually possible to talk about dementia-friendly communities where you put up signage everywhere so people with Alzheimer’s Disease, who have spatial navigation difficulties, can get a bit of help.

But not all memory problems are dementia, and not all dementias present with memory problems.

But what those people with frontal dementia who have perfect memory, but who present with a slow change in behaviour and personality according to their closest ones?

How should we make communities ‘friendly’ to them?

The policy construct immediately experiences an obstacle in that it talks about ‘dementia’ as one great mass, an error previously made for ‘the disabled’. But this criticism is of course by no means fatal – as conventional communities also contain a huge range of people of all different characteristics, anyway. But is then the concept too broad as to be meaningful, such as “male friendly communities”?

Something which Kate Swaffer, an Australian who has significant experience in campaigning for advocacy for people with dementia, and who herself lives with dementia, recently shared on Twitter was this eye-catching caption.

persimage

And you see the difficulty? How do we design a ‘community’ which is ‘friendly’ to ‘dementia’, if you believe like me that once you’ve met one person with dementia, you’ve met one person with dementia?

It’s clearly impossible to legislate for someone to be ‘friendly’ to another person in a society, however loosely defined, but it is worth at least acknowledging the existant law.

You can’t have a policy that discriminates against a group of people to their detriment, with that group of people defined by a ‘protected characteristic’ under equality law in this jurisdiction. Dementia can fall under this protected characteristic definition, as legally it can come under the definition of disability; any discrimination of disabled people is unlawful.

But you can easily argue that the policy fosters a spirit of solidarity far beyond rigid compliance with the law. Such solidarity of course seems somewhat at odds with the backlash against any form of state planning from this government and previous governments.

I’ve thought long and hard about the need to try not to dismiss worthy initiatives in dementia policy. For example, whilst I am concerned about the error rates of ‘false diagnosis’ of people with dementia, I would be equally concerned if NHS England did nothing to try to identify who the undiagnosed with dementia currently are.

Likewise, my natural instinct is to think about whether the charity sector is distorted with initiatives such as ‘Dementia Friends’.  According to the Government’s website, by 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England, and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Linking the global policy of dementia friendliness to one charity, when other similar initiatives currently exist (such as the Purple AngelsJoseph Rowntree Foundation, University of Stirling, WHO, and RSA), means that many dementia charities may get unfairly ‘squeezed’.

I do, however, intuitively and desperately wish this policy to succeed. For example, at my stall yesterday at the SDCRN 4th Annual Conference (the Scottish Dementia Clinical Research Network), a person called Hugh actually bothered coming up to me to tell me how much being a ‘Dementia Friend’ meant to him. He talked about friends of his who were ‘Dementia Champions’. He spoke with tremendous affection about his late wife had lived with dementia for eight years, and the importance of community work to him.

my stall

And it is very difficult to deny that initiatives such are this are truly wonderful.

Pharmacy

A real concern, though, is that by conceding one is building a ‘dementia friendly community’, even with all the best will in the world, the term itself doesn’t for me suggest or promote real inclusivity. It still sadly implies a ‘them against us’. I think I have this attitude because I’m physically disabled, and I would balk at the term ‘disabled friendly community’. It’s incredibly important that this policy is not London-driven friendly communities with more than a twang of tokenism.

I am therefore leaning towards a viewpoint expressed by Simon Denegri, Chair of INVOLVE, and NIHR National Director for Public Participation and Engagement in Research:

And surely you’d want businesses and corporates to be ‘dementia friendly’? But which corporates, and why dementia? Surely you’d want them to be friendly with rare muscle wasting diseases, or cancer, for example? Shouldn’t carers get their own “carers friendly communities”?

This poses big problems for our perception of inclusive communities.

Alastair shared a lovely picture which sums up the problem for me.

You can easily see why certain corporates such as banks might wish to help out with this policy, because people with dementia can be at risk of financial abuse, but is this a genuine drive to help people with dementia or is it a pitch to secure competitive advantage like ‘ethical banking’.

Apart from isolated stories such as of dedicated no-hurry lanes in supermarkets, for example, surely one would have expected supermarkets to have pulled out all the stops with adequate signage everywhere? Many large supermarkets have about thirty lanes where it’s easy for the best of us to get lost. I don’t think I’ve ever been to a dementia-friendly supermarket where the signage would be of a good enough quality to prevent a person with mild Alzheimer’s Disease becoming spatially disoriented.

“Dementia friendly communities” lend themselves easily to ‘diversity marketing’, however. Diversity marketing is a marketing paradigm which sees marketing (and especially marketing communications) as essentially an effort in communication with diverse publics. As an acknowledgement of the importance of diversity marketing is that AT&T Inc. has a post for this discipline at vice president level. It is reported that, starting in the 1980s, Fortune 500 companies, government agencies, universities and non-profits organisations began to increase marketing efforts around diversity, according to Penn State University.

I asked my friends on Facebook whether there was anything particular ‘immoral’ about this diversity marketing in relation to dementia friendly communities, and their responses were as follows.

Comments 1

Comments 2

In other words, there is no ‘right answer’.

It’s clear to me that this policy, as it is currently being delivered, needs much greater scrutiny in terms of where the benefits have been, and for whom.

 

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A consensus for high quality research into living well with dementia as well as cure is a massive step forward

It would have made a very nice narrative.

That there is a prodromal phase for Alzheimer’s disease, perhaps called mild cognitive impairment, at which point you could ‘stop dementia’ in its tracks. And anyway you would have identified individuals a long time ahead of that, with personal genomics for example.

And job done.

It all started fairly innocuously.

It all started innocuously enough

Except, it’s clearly ridiculous to scan everybody in the population in the off chance that some of them are surrepticiously developing Alzheimer’s disease. It’s also relatively impractical to stick a needle to the lumbar spine, if not contraindicated, of possible individuals. The results for cerebrospinal fluid biomarkers, brain atrophy on brain scans, and so are are desperately unsuitable for the clinic.

And it was clear from the audience of the #SDCRN that some people were not playing ball either.

But earlier in the day I’d laid into Prof John Starr had somehow collapsed the whole of living well with dementia into “non-pharmacological interventions”.

This slide had a lot of criticism

I tackled Srarr in the Q/A session over this, and cited Prof Sube Banerjee’s work in producing the 2009 English dementia strategy called ‘Living well with dementia’. Unfortunately, we “ran out of time” – but I got my reply to his reply in! #lol

But as a Cambridge graduate himself, Prof Starr was a real delight to talk with over coffee; as a Chair in Edinburgh, he knows well some of my friends, and indeed knows Prof John Hodges who kindly wrote my Foreword. We had a lovely chat anyway, and I decided we’d been talking at cross-purposes.

Anyway my political activism, somewhat crankily on behalf of people actually living with dementia, continued as the day progressed.

Indeed, today’s #SDCRN conference, the fourth annual of its kind, for the SCDRN, gave Henry Simmons, CEO of Alzheimer Scotland (@AlzScot), a chance to recapitulate on the importance of the G8 Dementia Summit, held last year in London in 2013.

This meeting was being held at the Beardmore Conference Centre, near Glasgow; so this perspective was entirely fair, given that Alzheimer Scotland have been powerful supporters of the #SDCRN.

Simmons explained how the Summit had stablished steering group with respective G8 organisations, Alzheimer’s Disease International and Alzheimer Europe.

However, after 50 years of campaigning, did Simmons feel that this was as a particularly good outcome? No.

Simmons remarked upon how there were somehow 88000 people involved with people living with dementia in Scotland, including carers and families.

I mooted over the lunch break with Dr Peter Connolly, Co-director of #SDCRN, that at least carers of people with dementia at least now ‘had a voice’. Connolly said that “they had always had a voice”.

Immediately, one can think of Thomas Whitelaw (@TommyNTour) with his turbo-charged mission to give carers a voice in Scotland.

It’s slightly out of focus, but bear with us.

Simon Denegri, @SDenegri, had earlier in the day given an outstanding talk on the need for patient involvement in influencing research policy in dementia. Simon is the Chair of INVOLVE. He is also the National Institute for Health Research (NIHR) National Director for Public Participation and Engagement in Research.

Denegri, interestingly, welcomed the appoint of Prof Martin Rossor (@martinrossor) as the Dementia Tsar for research (announcement here). I thought the substance and tone of this talk was spot on, though perhaps I would prefer to think of individuals as persons who happen to be living with a diagnosis of dementia who can become ‘patients’ within the jurisdiction of the medical profession at any time.

Simmons was blunt about the fundamental problem: that it currently takes $1 billion to take a drug to market, and there’s only a handful of drugs with limited efficacy for symptomatic treatment.

“We can’t sit back and wait for ten years.”

“We have to ensure that people living with dementia are able to live as well as possible – how he organise help and support for people currently living is as important as ever.”

Simmons’ concession that “But we’re weak at then seeing what works” I took as a fundamental concession to the idea that we also need good quality research for care too, in keeping indeed with Simon Denegri’s reference to ‘cure, care and cause‘, extended by Jess Smith (@smiththegeek), Research Communications Officer of the Alzheimer’s Society, to include ‘prevention‘.

Simmons though put it slightly more strongly, emphasising that it would be inappropriate to focus on research on cure without giving due regard to people living with, and caring for people living with, dementia. And this was a theme which Dr Peter Connolly reverted to in his summary of the whole day – that it would be now impossible to separate out the importance of any one view: cure, care, cause and prevention. The way that Connolly proposed the issue in his summary, I thought, was an effective one: that one could never dream to imagine research strategies in cancer having disproportionate areas of focus in care, cure, prevention and cause.

Clearly the news of Scotland is good, and Simmons is proud that progress has been made.

There is a National Dementia Strategy in Scotland from 2013-6In this, there is a guarantee of a minimum of one year’s post diagnostic support, from a named link worker, for every person diagnosed with dementia.  The guarantee is based on the five-pillar model developed by Alzheimer Scotland. This clearly has implications for the organisation of the integration of health and social care for England, with formulations of ‘whole person care’ edging towards a similar system with these key coordinators. For example, Serco puts quite a bit of emphasis already on a ‘care coordination centre’.

Amongst the five key challenges for Scotland, fear of dementia is mentioned as a reason for people not seeking diagnosis. Stigma is mentioned and the reluctance of some general practitioners to diagnose. Solutions are described in the form of informing people of the benefits of diagnosis and improving the quality and availability of post-diagnostic support.

I think the audience generally felt we needed to talk openly about stigma, and Dr Peter Gordon (@PeterDLROW) cast the net wider to say that we ought to be careful about language full stop.

I’ve begun to think that the term ‘dementia friendly communities’ can at worst encourage division:

but I met a guy called Hugh whose late wife had been living with dementia for eight years. He was passionate about being a ‘Dementia Friend’, and was indeed extremely proud of the work being done in his community.

There were many aspects of Simmons’ speech which reflected my overwhelming philosophy of ‘Living well with dementia’, on which I have written a whole book recently, evaluating critically the underlying evidence base for this jurisdiction – but in a suitable manner for an interested and informed member of the general public. Simmons at that point raised a point that no-one can fundamentally can disagree with the fact people with dementia need information to be able to exert choice and control, or to live in supportive communities. I agree with Simmons, as indeed I have devoted two whole chapters to these policy planks in my book.

Simmons also described the correct view, in my view, that persons with dementia need to be engaged with the system far before a “crisis” occurs. The evidence appears to suggest that it might be possible to prevent unnecessary hospital admissions of people living with dementia. This is definitely a phenomenon which we have been experiencing too in acute medicine in England (with a large proportion of the acute medical take having a comorbidity of dementia). But Simmons also warned, correctly, that, as the persons’ needs for living well with dementia changes, we need to make sure that their solutions for living well adapt.

Simmons then put a slide which interested me, as it fundamentally reflects the ethos of my book, of persons interacting with their environment. I still have concerns about the word ‘care’ as it implies some sort of transaction potentially, and I prefer the notion of ‘shared care’ of people with dementia being at the heart of decisions when they legally have the capacity to do so.

Critical to this is the “dementia practice coordinator” in the “eight pillars of community support“, but again Simmons conceded “we need to know what works and what doesn’t care: it needs to be more than basic social care and support.”

8 pillars

Simmons made quite a big thrust of his thesis that we need highly quality research to inform on integrated care (between health and social care systems), and implied that the current systems were a long way from that. It is likely an incoming government both in England and in Scotland will be publicly opposed to social cuts, whilst carrying them out in some form, while promoting personalised care (and possibly personal budgets). But Simmons view that there needs to be good quality researching care is borne out by other stakeholders too, and, despite the stated aims of the G8 dementia Summit, a collective opinion may be slowly crystallising.

You see, under this system and “whole person care” which will be left for a future UK Labour government to introduce, I view the person with dementia always to have the philosophy of ‘living well’ right behind them – and they truly become a patient when they fall ill, and then become under the jurisdiction of the medical profession which I think still has much to learn about the dementias.

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I intend to promote the need of high quality wellbeing research at the SDCRN 4th Annual Conference on dementia in Glasgow today

This is the programme for today which I’m looking to enormously today.

I will be promoting heavily the cause of living well with dementia, to swing the pendulum away from pumping all the money into clinical trials into drug trials for medications which thus far have had nasty side effects.

In keeping with this, I have been given kind permission to give out my G8 Dementia Summit questionnaire to look at delegates’ perception of what this conference was actually about.

We need also not to lose sight of the current persons with dementia, to ensure that they have good outcomes in the wellbeing.

This can be achieved through proper design of care environments, access to innovations including assistive technology, meaningful communities and networks for people with dementia to be part of and to lead in, and proper access to advocacy support services and information which empower choice and control.

There’s a lot to do here – and we need to have high quality research into all of this arm of research too.

Coming back home to Scotland is like travelling back in time for me.

I was born in Glasgow on June 18th 1974, and my lasting memory of leaving Glasgow for London 37 years ago was how relatively unfriendly Londoners were in comparison.

Of course the train journey through the beautiful England-Scottish border countryside brought it back to me. There’s a lot to be said for getting out of London. It’s an honour to be here back in Scotland.

My book ‘Living well with dementia’ is here.

Contents

Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion

Reviews

Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’
Professor John R Hodges, in his Foreword

‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword

Book cover

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Tomorrow, hell freezes over as I attend my first conference on dementia since 1999

I have famously said, “All hell will freeze over before I attend a conference in dementia”.

freezing hell

Well, actually, tomorrow is the day that theoretically all hell freezes over.

I will be taking the train in the afternoon to go from London Euston to Glasgow Central.

It is in fact a very highly emotional journey for me. I was born in Glasgow on June 18th 1974. I am very loyal to my Scottish friends, as I have very happy memories of Scottish people. I remember thinking, at the age of five, how relatively unfriendly people in London were, when I moved down South.

I have been meaning up with Dr Peter Gordon for ages for this. Peter’s to be found on  Twitter as @PeterDLROW.  If you’re wondering “why DLROW?”, the answer is simple.

About 20 years ago, I used to administer myself the Folstein Mini Mental State Examination (MMSE) and one of the questions famously is “Spell the word “WORLD” backwards”. The full (abbreviated) MMSE is here.

For a few weeks, I have been meaning to take a break from tradition of usual slagging of conferences of dementia, which I’ve disparagingly called ‘trade fairs’, mainly because I’ve never been invited to them. This came to a head recently when I was fuming that nobody considered me good enough to invite me to #NHS #InvExpo14 (see blogpost here), and I was subjected to a torrent of tweets saying they were having such a nice time there.

My stance of railing against every single exhibition was scuppered when this conference in Glasgow came up. As per usual, nobody bothered telling me they were going. I only found out by complete accident. The organisers have even allowed me to show my book to everyone out of goodwill as they feel the book promotes research into wellbeing in dementia (which it does). I’ll be giving out my survey of #G8dementia to about 130 other academics, which asks searching questions about their perspective of the perception and identity of the #G8dementia conference held last year.

It’s known I have a longstanding interest in dementia. I’ve written a book called ‘Living well with dementia’, which is not easy for me to promote at all. I am simply lucky that I have been blessed by good friends such as @WhoseShoes who’ve been battling for me against all the odds. @WhoseShoes’ incredible biography on the day of launch is here. Indeed, @KateSwaffer and @norrms have been very supportive too, which is why I continue to hold the untenable thought that my book will one day influence policy.

But my friends have been AMAZING. This was @dragonmisery‘s mention of my book  on the influential ‘Dementia Challengers’ website about recommended  books. And @BethyB1886 has been wonderful too – here’s my mention.

In fact, I’ve been working on dementia long before CEOs or directors of research in dementia charities appeared on the scene. I did my Ph.D. in Cambridge, and my Brain paper in Brain is appreciated to be a seminal contribution to the field (and is in the current Oxford Textbook of Medicine).

ABuns1907

I think the world of Prof Alistair Burns (the clinical lead for dementia in England). I have given Prof Burns and Prof Sube Banerjee, the previous leader in dementia and an expert in wellbeing, a copy of my book. In fact, I am delighted that Prof Martin Rossor is intending to read my book too. Martin, for anyone of us lucky enough to have across his work, is simply outstanding. I am thrilled he has been appointed by the Chief Medical Officer as NIHR Director for Dementia Research.

I have become very pro-patient, particularly out of my disillusionment with what I perceive to be a failure of the medical model for people with dementia. I think at worst people end up with a label, attend outpatients every few months to get told whether their brain scans or cognitive testing have changed, and the medications have little efficacy for many in treating symptoms or altering progression. It was on seeing how my late father had to cope with excruciating back pain that I had an ‘epiphany moment’ of wishing to write a book which produced a synthesis of the notion of living well with dementia.

It is in fact a very far cry from my original published work on the drug treatments of dementia in prestigious international peer-reviewed journals: methylphenidate (ritalin) published in Nature Neuropsychology, and paroxetine (seroxat) published in Psychopharmacology, for patients with frontal dementia. But I’ve become acutely aware of false claims from Big Pharma about dementia, and the hysterical reporting of dementia by some in the light of  the Prime Minister’s Dementia Challenge. I remember reviewing the failures of these treatments as far back as 1999 for a chapter for a multi-author book edited by Prof John Hodges on early onset dementia. And the promises from Big Pharma and the dementia fundraising charities have not changed one jot.

So, now, I am finally feeling inspired to share some of my academic passion about dementia with others. I have had to conceal this passion for so long, but I think things came to a head when I witnessed people whose backgrounds were not in medicine, nursing or dementia making such a Horlicks in basic facts concerning dementia.

Still I suppose we’re all #inthistogether. But to varying depths.

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