Category Archives: Dementia Challenge

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Did the Prime Minister's Dementia Challenge park a 'National Care Service' for good?

I’m still unclear where and when the Prime Minister’s Dementia Challenge came about.

Airbrushed for challenge

The lack of a clear audit trail for the Prime Minister’s Dementia Challenge

I know that it was launched in March 2012.

“Dementia” is not mentioned in the Conservative Party Manifesto for the general election of 2010. It is however mentioned in the Coalition Agreement, with broadly the same wording as the Liberal Democrat manifesto 2010, but that still doesn’t explain how this became the “Prime Minister’s Challenge”.

In summary, the one line in the Coalition Agreement is drafted as follows:

“We will prioritise dementia research within the health research and development budget”

But still no specific mention of that “Challenge”.

The distortion effect of the Prime Minister’s Dementia Challenge

The Dementia Challenge prioritises the Alzheimer’s Society, and it is clear that other charities, such as Dementia UK (which is experiencing threats of its own to its superb ‘Admiral nurses’ scheme) trying to plough on regardless.

The £2.4 million “Dementia Friends” programme emerged from the Social Fund and the Department of Health. The scheme has been launched in England at first, and it is said that the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

Indeed, many supported the fundraising for Dementia UK only this morning in the London Marathon too.

Dementia UK London marathon

There is no official cross-party consensus on the “Prime Minister’s Dementia Challenge”, though individual Labour MPs support the activities of “Dementia Friends”.

The market dominance of the Alzheimer’s Society for ‘Dementia Friends’ compared to other charities does not seem to have been arrived at particularly democratically either. There is no conceivable reason why other big players, such as “Dementia UK” or the Joseph Rowntree Foundation, were excluded from this friendship initiative.

Ironically, Japan upon which befriending is modelled is not ashamed of its care service.

It is palpably unacceptable if people are ‘more aware of dementia’ without a concominant investment in specialist memory clinics, or care and support services.

Genuine concerns from stakeholders involved with dementia care

It is clear amongst my followers on Twitter that the nature of this “Challenge” is causing considerable unease.

Concidentally I was reminded of this this morning:

But there are now some very serious questions about this policy, particularly from the ‘zero sum gain’ effect it has had knock-on in other areas of dementia policy.

When @Ermintrude2 looked into this at the time, the response was a bit confused.

And indeed Ermintrude has penned some thoughts at the time on this high impact blog.

What has happened to social care in the name of ‘improvement’, I agree, is very alarming.

But we do know full-well about the ‘democratic deficit’.

False pledges and threats, and unfulfilled promises

The general public were unaware that a 493 Act of parliament called the ‘Health and Social Care Act’ would be sprung on them, with a £3 bn top-down reorganisation.

But this was Lansley’s “emergency conference” on Labour’s “secret death tax” in February 2010.

A number of views were expressed at the time, including the need for better care from the Alzheimer’s Society at the time under a different CEO.

The full thrust of ‘Dementia Friends’ is a total change of mood music from February 2010’s concerns of the Alzheimer’s Society reported here:

“Care and treatment for sufferers of dementia should be at the heart of the general election campaign, the Alzheimer’s Society charity has said.”

Where has the Society been in campaigning on swingeing cuts in social care?

Also, in February 2010, Gordon Brown’s speech at the King’s Fund was reported, where Brown made a significant pledge.

“Mr Brown also announced that the government’s planned reforms to community and primary care health services also included a commitment to provide dedicated “one-to-one”nursing for all cancer patients in their own homes, over the next five years.”

We do know that the NHS has been persevering with this programme with ‘efficiency savings’.

In October 2012, it was reported that nearly £3bn was indeed returned to the Treasury, and it is unclear how, if it at all, it was returned to front line care.

So it’s possible that Brown’s plan, the subject of a hate campaign at the time from the Tory press, might have worked in fact.

Dilnot

In 2010 Andrew Dilnot had been tasked by the then government to propose a solution to the crisis in social care.

The response was from February 2013, after the top-down reorganisation.

“Mr Dilnot suggested a cap on how much anyone would be required to pay for their care costs over the course of a lifetime, suggesting a ceiling of between £25,000 and £50,000 (in 2010/11 prices). Beyond this point, the state would take on responsibility for the majority of the bill.

The Government today announced that from 2017 it intends to establish a cap of £75,000 in 2017 prices which, according to Mr Dilnot’s calculations, equates to approximately £61,000 in the 2010/11 prices (the basis of his report). If we’re to make a claim about the extent to which the Government has ‘watered down’ Mr Dilnot’s proposal, it’s crucial that we account for this inflationary effect.”

Resurrection of the ‘National Care Service’ by Andy Burnham MP yesterday, Shadow Secretary of State for Health

This issue may have to be revisited at some stage. Andy Burnham MP yesterday in the Bermondsey Village Hall, without much press present, mooted the idea of how a social care service could be established on the founding principles of the NHS, and would be a significant departure from the piecemeal 15-minute slot carers.

Burnham stated that care provided by inexperienced staff on zero-hour contracts was a problem.

An experienced member of the audience highlighted the phenomenal work done by unpaid family caregivers particularly for dementia.

The topic of a compulsory state insurance is interesting.

Social health insurance systems share a number of similar features:

  • Insured persons pay a regular contribution to a health insurance fund based usually on income rather than reflecting their risk of illness.
  • Clinical need and not ability to pay determine access to treatments and health care.
  • Contributions to the social insurance fund are kept separate from other government mandated taxes and charges.

In his classic article, Kenneth Arrow (1963) argues that, where markets fail, other institutions may arise to mitigate the resulting problems: ‘the failure of the market to insure against uncertainties has created many social institutions in which the usual assumptions of the market are to some extent contradicted’ (p. 967).

Rationale for this method of funding

A great advantage of ‘social insurance’ is, because membership is generally compulsory, it is possible (though not essential) to break the link between premium and individual risk.

There might be other important aspects. For example, both employers and employees pay contributions. Also, there might be Government support for those who are unable to pay goes through the insurance fund.

I have written before on the increasingly sophisticated methods of genetic diagnosis of dementias, and how this might impact on our health systems.

The philosopher John Rawls (1972) argues that in a just society the rules are made by people who do not know where they will end up in that society, that is, behind what he called the “Veil of Ignorance”.

Insurance can be interpreted as an example of solidarity behind the Veil of Ignorance: a person who joins a risk pool does not know in advance whether or not he will suffer a loss and hence have to make a claim. Insurance thus has moral appeal.

Ultimately there is a problem as to what type of care might be covered.

Does the policy cover only residential care, or also domiciliary care; is a person entitled to residential care on the basis of general infirmity or only if he or she has clearly-defined, specific ailments?

In the Dilnot recommendations, the cap on care payments did not include the “hotel costs” that a care home will charge. In other words, people in residential care will still need to pay (at the Dilnot report’s estimate) between £7,000 and £10,000 per year to fund their accommodation and living expenses. 

Furthermore, how will the answers to these questions change with advances over the years with changes in the actual prevalence of dementia, or in the implementation of ever increasingly sophisticated medical technology?

It has been proposed (Lloyd 2008) that long-term care could be financed via social insurance, with the premium paid as a lump sum either at age 65 or out of a person’s estate. The idea behind this proposal is twofol.

Firstly, as a person gets older, the range of uncertainty about the probability of needing long-term care  becomes smaller.

Secondly, if a person can buy insurance for a single premium payable out of his or her estate, the cost of long-term care does not impinge on his or her living standard during working life or in retirement, but can frequently be taken from housing wealth.

Development of social health insurance systems have normally been in response to concerns that inadequate resources were mobilised to support access to health services.

The continuing swingeing cuts in social care

And these cuts have continued: this report is from March 12 2014,

An analysis by Mind found that the number of adults with mental health needs who received social care support has fallen by at least 30,000 since 2005, a drop of 21%. Cuts to local authority social care budgets – the majority of which have hit since 2009 – have left a funding shortfall for care of up to £260 million, the charity said.”

Since there is no simple answer to the question of how much is the appropriate level of support, the issue of adequacy is best thought of as being a level that is considered appropriate in the country given its total resources, preferences and other development priorities.

And where are people from charities campaigning on this issue?

This issue of course was not considered at all in the G8 Dementia Summit, which focused on more monies for personalised medicine, genetic and molecular biology research, in response to concerns from an “ailing industry”.

Conclusion

I am actually truly disgusted at this unholy mess.

 

 

 

References

Arrow, Kenneth F. (1963), ‘Uncertainty and the Welfare Economics of Medical Care’, American Economic Review, 53: 941–73; repr. in Cooper and Culyer (1973: 13–48), Diamond and Rothschild (1978: 348–75), and Barr (2001b: Vol. I, 275-307).

Lloyd, James (2008), Funding Long-term Care – The Building Blocks of Reform, London:

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More specialist nurses for dementia, less gimmicks please. Ta.

With commissioners having to make crucial decisions about acute and chronic healthcare, and, with an ever increasing budget being engulfed for some by paying PFI loan debt repayments, it has never become more important to have properly funded resources for medicine, nursing and social care. Gimmicks, such as badges and pledges, or talks given by people with worse than a very basic knowledge of dementia, can have their place, but they are never a replacement for care and support from the State which needs adequate financial funding.

With graphs such as this displaying real time spending in the NHS as a whole, cutting back on care might seem like an easy option, especially with a supine media promoting ‘awareness’.

real time spending in the NHS

Awareness cannot be ascertained by how many stickers you have in a shop window, or how many corporates you have to got to sell your gimmick with your logo. It’s about a dialogue about the dementias are about, what medications can and cannot do, and possible strategies for supporting living well with dementia or what makes a care home, amongst lots of other issues.

There is an alternative to trivialising dementia. I am now actively avoiding twitter conversations which trivialise dementia to a gimmicky or an equally superficial level where you flit about talking crap to another.

From the point of an initial diagnosis, to navigating your way through an increasingly complex health and social care and benefits system, and to experiencing the raw emotion of it all, the experience might be called a ‘journey’. This term clearly has its limitations, as there aren’t any suitcases packed, and there’s no return ticket.

There are questions to be asked, invariably.

What form of dementia is it? There’s probably about a hundred different types of dementia, though Alzheimer’s disease is the most common form,

Is there medication which might slow down the symptoms? Recent years, with different agendas to blame, have witnessed obfuscation and subterfuge of this basic issue. See my recent blogpost here, for example.

Either way, what is the prognosis? How will the illness develop? What alternative support mechanisms are there? Can the person with dementia, at various stages, be supported to stay at home?

Or would a residential home offer a better quality of life? What determines a good residential care home? Could a member of the family accept the person into their own home? What is the role of the social services – will three 10 minute visits every day go anywhere near alleviating the family’s worry?

These questions are invariably important.

Yet, if the GP or the Consultant who diagnoses the condition, pointed the family in the direction of Dementia UK’s Admiral Nurses, so many of the family’s questions would be answered immediately and the “journey” now being undertaken would not be so lonely. It has struck me how keen people are for ‘befriending’ schemes run by people who literally have no idea what dementia is, while criticising vehemently the ‘care model’ of Admiral nurses. This is simply not on for me.

The problem is that there are far too few Admiral Nurses, and the name is not widely known – although, of course, it should be known by the medical profession.  Until recently, Admiral nurses, only formed part of community nursing teams. But now the principles are being used in hospitals too.

Even if there is no Admiral Nurse in your geographical location, the medics could at least suggest Admiral Nursing Direct’s telephone help line. This is staffed by experienced Admiral Nurses and offers practical advice and emotional support to people affected by dementia. Admiral Nurses are supported by Dementia UK. The charity works with NHS Trusts and other not-for-profit organisations- such as Making Space, Age UK and the Royal British Legion – to set up the services.

It costs £80,000 per year for an Admiral Nurse – £50,000 for the salary (the NHS standard wage for someone who is as highly skilled as Admiral Nurses need to be) and £30,000 for the Admiral Nursing Academy costs, Pioneer work and other overheads. Dementia UK provides the £30,000 needed to train a Registered Mental health Nurse to become an expert in Dementia care and the salary is paid by the NHS or other not-for-profit organisations.

At the moment, there are only 85 Admiral Nurses in the UK and, clearly, with cases of dementia now topping 800,000 in England, many more of these qualified Nurses are – and will be – needed. Very many people have asked, “Would it not be better to invest the £2.4 million – set aside for the Dementia Friends Initiative – in the recruiting, training and expanding the network of Admiral Nurses?”

One thing that the general public are not is stupid.

All nurses can make a contribution across the dementia pathway, defined as the right care, support and treatment for a person with dementia in the right place and right time. This should be rrespective of provider, whether it’s within the NHS, social, private, voluntary or prison sectors.

This support starts right from living well with dementia, empowering persons with real information about what to expect from the condition, and reducing social stigma, through to early identification, diagnosis, and maintaining health and wellbeing. This will need ultimately to come to a helpful and constructive candid discussion about end of life care and bereavement support for carers and their families.

All nurses – public health nurses, midwives, mental health nurses, learning disability nurses, district nurses, community nurses/matrons, practice nurses, Admiral Nurses, specialist nurses including specialist dementia nurses, acute nurses, Macmillan nurses and palliative care nurses – all have their part to play in achieving, and sustaining, better outcomes for people with dementia, at all ages.

To find out if there is an Admiral Nurse in your area, please ring 0845 257 9406 (phones are answered Tuesdays-Thursdays 11am-8.45pm and Saturdays 10 am-1pm) or email direct@dementiauk.org

If you are a carer for someone with dementia, you might think about joining Dementia UK’s “Uniting Carers”, which is an involvement network of family carers of people with dementia. The aim of the network is to give carers the opportunity to raise awareness and increase people’s understanding of dementia – and find support from others in the same situation. Click on the link on Dementia UK’s website.

Finally, it’s struck many of us that many hospitals are ill-equipped for patients with dementia when they are admitted with a medical problem. People with dementia don’t go into hospital because they have dementia, they are there because they are physically unwell but, unfortunately, acute hospital staff have been ill-equipped to deal with the added needs that dementia presents, both for the person with dementia and their carers.

With the introduction of ‘efficiency savings’, some acute medical departments took on the atmosphere of a conveyor belt.

This is alarming also for the junior staff who have to work in such conditions, whilst simultaneously expected to deliver ‘compassion’. Of course, for many who have never done a clinical rôle in their life, such as worked in entertainment or politics, it can be low hanging fruit.

Under such conditions, it can seem that meeting the physical and psychological needs of patient gets given a low priority.

And simple things can make a massive difference.

For example, if patients are confined to bays, they might be tempted wander off and be at risk to themselves or others.

On the other hand, if you give them a table and encourage patients to join each other for a biscuit and a chat, they will relax and have a much more positive experience of being in hospital.

Some nursing leaders clearly are passionate about reforming hospital care for patients with dementia and their families.

Take for example development of the pioneering dementia-friendly ward for patients with memory problems who are admitted with a medical condition, which includes brightly coloured doors to help patients remember which bays they are staying in and a lowered nurses’ station renamed “reception” to improve accessibility and ensure patients feel more comfortable.

So let’s give the gimmicks a bit of a rest, and invest in proper care and support for once?

AND FINALLY, here’s a petition to recruit more Admiral Nurses.

Yes, despite the “Prime Minister’s Dementia Challenge”, it really has come to this.

How very sad.

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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.

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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).

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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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A digital strategy for the 'Dementia Challenge' and the 'Dementia Challengers' website

There is a debate – yet to reach proper fruition – on the extent to which individuals can ‘maintain and manage their own health’, and that healthy living is not always an individualised, purely rational process of information-seeking and correct choices that result in improved health and independence (Henwood, Harris and Spoel, 2011).

Living well with dementia nonetheless appears to involve supporting individuals in making decisions appropriate for them, and these are decisions which directly affect their care and support. However, as a result of the dementia itself, a person’s mental capacity can change, and the nature of this decision-making process will change, with carers involved in reviewing the needs and preferences of individuals with dementia as their circumstances change. Whilst the focus of this book is not legal, and certainly an intention of this book is not to give any medical or legal advice, this chapter introduces the very important issue of independent advocacy services, as access-to-justice is an important feature of all civilised societies.

A key to making informed decisions is having full, accurate information.

However, the information can be incredibly overwhelming. Lee  (@dragonmisery) decided to organise this information for carers in an organised way. Her impressive website, “Dementia challengers: Signposting carers to online resources” (http://www.dementiachallengers.com), is a great place for information about dementia, and this website contains information specifically for carers.  Clearly, accurate and complete information such as on this website is essential for individuals with dementia and their immediates to be able to exercise control and choice properly in negotiating access to resources.

Dementia Challengers

A previous policy document, “Putting People First: A shared vision and commitment to the transformation of Adult Social Care”, amongst others, had made a close link between person-centred care and ‘choice and control’.

Ensuring older people, people with chronic conditions, disabled people and people with mental health problems have the best possible quality of life and the equality of independent living is fundamental to a socially just society. For many, social care is the support which helps to make this a reality and may either be the only non-family intervention or one element of a wider support package. The time has now come to build on best practice and replace paternalistic, reactive care of variable quality with a mainstream system focussed on prevention, early intervention, enablement, and high quality personally tailored services. In the future, we want people to have maximum choice, control and power over the support services they receive.

Lee is specifically mentioned by Anna Hepburn (@AnnaHepburnDH), Digital Communications Manager for Social Care, in an article entitled ‘Digital engagement on dementia’ on the Department of Health website.

As one of the #dementiachallengers, Lee (@dragonmisery) has set up the Dementia Challengers site to signpost online resources for people caring for someone with dementia. Nothing demonstrates better how the Dementia Challenge is more than a government initiative – and how it has its own digital life – than people who care about dementia creating their own digital community and helping others.

Anna Hepburn in her online article from 16th April 2013 then explains how this is consistent with the wider ‘digital strategy’ from the Department of Health (and other Government departments):

Digital isn’t just about publishing anymore. The Department of Health (DH) digital team certainly knows that, but there are plenty of people within the department – and across government – still to be convinced of the wider benefits of digital, or uneasy about new ways of working.

Tapping into this community provides a great opportunity for policy colleagues to engage with people with day-to-day experience of living, caring or working with dementia. I’ve learnt a great deal from them myself and now I want to find ways of extending those benefits to the dementia policy team. So this is the next step, to fulfil some of the central aims of the DH digital strategy – embedding digital processes in the way we work, giving policy colleagues the tools and confidence to engage digitally, and helping them identify the most appropriate digital tools and techniques for each stage of the policy cycle. And I’ll continue to try out new digital ways of opening up our work, such as the live blog from the Dementia Village, which helped extend the reach of the event.

Stephen Hale (@hmshale) is the ‘Head of Digital’ for UK Department of Health. The emphasis on open policymaking by the Department of Health is a welcome aspect of its digital strategy (Strategy). It is through this Strategy that the Department of Health have committed to using digital tools and techniques to improve upon an open policymaking process. The five stages are:

Stage 1: Shaping the policy product

Stage 2: Engaging stakeholders

Stage 3: Building robust analysis and evaluation

Stage 4: Finding practical solutions and enabling delivery

In the business sector, Gomes-Casseres (1996), in a very famous work called, “The Alliance Revolution: the new shape of business rivalry” has advanced the thesis of constructing networks actively to seek out and incorporate external knowledge into the innovative processes of businesses. Social networks play an important role in the sourcing and sharing of information, ideas, and knowledge, particularly where they span functional, divisional, and organisational boundaries. However, social networks are dynamic, personal, and unrecorded, and, as a result, they are difficult to manage and direct. Organisational networks also play an important role in the innovation process; they are flexible, enabling network members to reposition themselves more speedily in response to changes in technology and market. They also bring together distributed resources, knowledge, and competences.

The open innovation paradigm for firms, pioneered by Henry Chesbrough (2003), can be interpreted going beyond just using external sources of innovation such as customers, rival companies, and academic institutions, and can be as much a change in the use, management, and employment of intellectual property as it is in the technical and research driven generation of intellectual property. There are clear lessons to be learnt in the development of policy about dementia in a way that includes opinions of all stakeholders, not just the usual ones.

Useful readings

Chesbrough, H.W. (2003) Open Innovation: The new imperative for creating and profiting from technology, Boston: Harvard Business School Press.

Department of Health (2012) Department of Health Digital Strategy [20th December], available at: http://hale.dh.gov.uk/2012/12/20/the-dh-digital-strategy/.

Gomes-Casseres, B. (1996) The Alliance Revolution, The New Shape of Business Rivalry, Cambridge, MA: Harvard University Press.

Henwood, F, Harris, R, and Spoel, P. (2011) Informing health? Negotiating the logics of choice and care in everyday practices of healthy living, Social Health & Medicine, 72, 2026-2032.

Hepburn, A. (2013) Digital engagement on dementia. [16th April], available at: http://digitalhealth.dh.gov.uk/digital-engagement-on-dementia/

UK Government/LGA/ADASS/NHS (2007) Putting People First: A shared vision and commitment to the transformation of Adult Social Care, London: Her Majesty’s Stationery Office, available at: http://www.cpa.org.uk/cpa/putting_people_first.pdf.

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I am taking my 11000 Twitter followers all the way in promoting wellbeing in dementia

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I am taking my 11000 followers on Twitter (@legalaware) all the way in engagement over the G8 ‘dementia summit’.

Anna Hepburn at the Department of Health will be spearheading implementation of its own digital strategy on 11 December 2013, which I am looking forward to enormously (here).

A friend of mine is a prominent campaigner for dementia. He lives with a type of dementia which is quite common in a certain age group.

I was aghast when he said this week he had attended a clinical commissioning group meeting, but had faced stigmatising language about dementia. The leader of that meeting had referred to someone having ‘a bit of dementia’.  My friend was not impressed, but politely wrote to him afterwards. The leader replied with dignity.

But this for me epitomises the uphill battle those of us who genuinely care about dementia really face.

My baptism of fire into the world of dementia is when I did cognitive assessments in Cambridge of patients with frontal dementia, for Professor John Hodges who was chair of behavioural neurology at the time.

Since then, and bear in mind that this is more than ten years ago, I have firmly believed that there is no more important voice than the person with dementia.

Also, it has become apparent to me that there are many in the caring professions, including of course carers who confront challenges to their own health. It seems that they also are expected to tiptoe with effortless ease through the maze of the law and finance, as well as information about the condition itself.

Sure, the drive for a ‘cure’ and ‘better treatments’ for dementia  as a ‘key priority’ from the Alzheimer’s Society (their press release on the ‘G8 summit’) is a worthy and commendable one. However, individuals with dementia and the people who are close to them need to have realistic expectations about what the drugs can do – and what they can’t do.

There are invariably going to be pressures on English policy in dementia policy, and dementia itself has to compete with a finite pot of resources compared to other very important long term conditions (such as chronic obstructive airways disease).

In the absence of a magic cure for the more prevalent types of dementia, such as dementia of Alzheimer type, I believe a huge amount of effort morally must be put into improving the quality of life of those loved ones with dementia.

I particularly admire Beth Britton for her work in dementia. Beth on her blog produces a clear first-hand precious witness of her father, whose journey of vascular dementia was for around 19 years. I had the good fortune to meet Beth, Gill Phillips (the force behind the ‘Whose Shoes‘ tool) and Kate Swaffer recently when Kate was visiting from Oz. Kate’s blog on personal experiences of living with dementia is a candid tour de force. Both Beth and Kate have reasonable expectations from society of its reaction to people living with dementia. Their voices have to be heard clearly through the noise of the system.

These are examples of genuine people, who care. Their passion for explaining the importance of the person is authentic.  It’s real.

I am nearly 40, and I realised a few years ago that anything can happen to anybody at any time. This crisis of insight occurred precisely at the moment  when I woke up from a six week coma in a London NHS Trust, as I had contracted meningitis. It’s how I became physically disabled.

When I studied medicine for all of six years at Cambridge, and did my postgraduate studies in London,  I had never heard of Tom Kitwood. Kitwood was, however, remarkable for revolutionising the way we think about dementia.

Medics are transfixed on their medical model, but Kitwood put the person in pole position in dementia care. This is extremely potent, corroborated in subsequent policy from SCIE on personalisation and person-centred care. I have indeed devoted a whole chapter to it in my book ‘Living well with dementia’.

Policy makers owe a debt they can never actually repay from people with dementia (such as Norman McNamara) or people who have come up close with dementia (such as Tommy Whitelaw and his late Mum Joan, whom Tom clearly adored).

In a closely-knit group of #dementiachallengers,  @charbhardy is also “first amongst equals”!  As Charmaine’s Twitter profile says, she is a carer to her husband with ‘PPA’.

PPA is primary progressive aphasia, a rare type of dementia. All the dementias have specific needs.

Charmaine’s poppy is even on the front cover of my book, with kind permission of course!  You will see some striking pictures of sterling gardening when you visit her Twitter profile. The flowers at the top of this blogpost are hers.

My book completely rubbishes the view that nothing can be done to help individuals with dementia.  Quite the reverse.

A lot CAN be done; whether this is improving the design of the personal home, care home, or ward; improving the outside environments such as paving; improving adaptations and technologies for the home; improving advocacy for people with dementia and their carers; improving networks and social inclusivity (through even the social media); promoting dementia friends and dementia-friendly communities (even banks); encouraging debate (e.g. through Mr Darren Gormley’s excellent blog.)

Or it might include improving information for persons with dementia  or their carers. See for example Lee’s “Dementia Challengers” resource which shows ‘choice’ to be more than some minor policy whim; it’s a real thing which can help people to live successfully with dementia.

There is therefore a huge deal which could and should be done.

However, the system is like a giant oil-tanker where it’s really hard to change direction. Beth Britton’s blog is amazing – I can’t praise it highly enough. This, however, upset me about how Beth’s own father had been treated (from a blogpost of Beth from 6 November 2013, entitled “Does the world really stop?”):

I lost count of the young doctors who saw my dad during his 19 years with dementia and questioned the point of treating a man who a) had a terminal disease, b) was immobile (as dad was for many years), c) doubly incontinent, d) had a swallowing problem (for the last four years of his life) and e) apparently in their narrow-minded judgement, had no quality of life whatsoever.

And this was Sally‘s experience (from the Foreword from my book):

Dementia of Alzheimer type destroyed his brain so badly that my father was unable to feed himself, mobilise, or verbalise his needs. He became totally dependent on my mother 24/7. As the condition advanced, my father became increasingly frail, with recurrent chest infections due to aspiration from swallowing difficulties. Each time the GP would be called out, antibiotics prescribed, and so the cycle would begin again. As a nurse, I wanted to see proactive management of my father’s condition. The system locally, however, was quite unable to provide this service. I feel that the dementia of Alzheimer type is a terminal condition, and, as such, should be treated like other similar conditions in care models. What we instead experienced was a “reactive “system of care where the default option was admission to hospital into an environment where my father would quickly decline.

I am lucky as I work closely with international people of the highest calibre around the world; we have a real focus on trying to witness the quality of life resulting from policy, researching it, and doing something about any shortfalls.

Through my 11000 followers, I am hoping to take some people, from all parts of society, on this journey with me. ‘Dementia is everybody’s business’, as this excellent badge from Lucy Jane Marsters shows.

I hope very much you’ll be inspired by Beth, Gill, Kate, Lee, Lucy Jane, Norman, Sally, and Tommy and others to make dementia your concern too. It’s  the type of society we all have a stake in and we should not be afraid to learn from brilliant members of society who happen to live with dementia.

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