Tag Archives: survey

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

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

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

CkZxSPrWEAAN0wu

 

 

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

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

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

 

 

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

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

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

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

 

 

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

The survey will take about 5-10 minutes.

 

Thank you very much.

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My survey on rights and dementia

This survey, which I am doing, is on rights and dementia.

This might mean rights you have a person living beyond a diagnosis of dementia (Kate Swaffer’s term) or as a carer.

This survey is not intended to make you feel bad in case you’ve never heard of these legal instruments or rights – simply answer ‘don’t know’. There’s no shame in that.

My view is that rights-based campaigning, which is adopted by the Scottish jurisdiction and increasingly by the English jurisdiction, is pretty rubbish unless people have heard of the rights which protect them.

The instruments referred to in this survey are rights includes ones which are automatically available to us, on the basis of being international instruments.

Thank you for your participation. It only takes a few minutes.

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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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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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My research survey on perceptions and image of dementia following the G8 dementia summit

This study can only take place subject to ethical approval from a local COREC. Whilst there is no wish to collect data apart from anonymously, and whilst we will ensure governance of the study for data collection, information given to participants, and whilst we will seek permission to take part (and consent), it’s imperative that a senior investigator on the team (not me) is accountable for the findings. This will be essential if we are later to publish any findings publicly in abstract form or beyond.

I am intrigued about personal reactions to the #G8dementia summit, regarding some perceptions and the image of dementia, and whether the summit addressed any of that.

I’m also interested in seeing whether the summit had a differential effect on those persons living with dementia, and those without (including carers).

There are 28 questions.

Some invite open-ended answers.

There’ll therefore be three groups:

Group A    Persons living with dementia

Group B   Carers

Group C   Not groups A or B

I’ll make three links to these 3 surveys available in time.

I’d be interested in any changes to the questions, or any additions to this list of questions. I will be also collecting very basic demographic data in my surveys. Please use the comments section below this post.

THE SURVEY

This survey is about your perceptions and image of the G8 Dementia Summit which took place in December 2013.

This survey is completely anonymous.

I’d be very grateful if you could answer as best as you can.

The questions have no right/wrong answers.

The survey is in three sections: Part A, B and C.

Thanks!

PART A

Questions 1 – 19

1. Did you see any of the news coverage on the television about the #G8dementia Conference last year?

Yes

No

2. Did you hear any of the news coverage on the radio about the #G8dementia Conference last year?

Yes

No

3. Did you read any of the news coverage on the internet about the #G8dementia Conference last year? This could include any references to the event in the social media, such as Facebook or Twitter.

Yes

No

4. Were you aware of a potential significance of dementia in the future?

Yes

No

5. Do you consider the response against dementia to be a ‘fight’?

Yes

No

6. Do you consider the numbers of people to be living with dementia to be a ‘explosion’ in the near future?

Yes

No

7. Do you consider yourself to be ‘shocked’ by dementia?

Yes

No

8. a) Do you think it’s right to compare dementia to HIV/AIDS?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

9. a) Do you think it’s right to compare dementia to cancer?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

10. a) Do you consider the response against dementia to be a ‘war’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

11. a) Do you consider the response against dementia to be a ‘flood’, or something against which ‘the tide must be turned’?

Yes

No

Not sure

b) Please provide further details, particularly if you were unable to produce a clear ‘yes’ or ‘no’ answer.

[open ended]

12. Did the #G8dementia summit evoke in you a feeling of being ‘fearful’ about dementia?

Yes

No

13. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about social care for dementia?

Yes

No

14. Did the #G8dementia summit evoke in you a feeling of being ‘excited’ about the possibility of a breakthrough in a cure for dementia?

Yes

No

15. Did the #G8dementia leave you clearer about the relationship between Alzheimer’s disease and dementia?

Yes

No

16. a) The #G8dementia sought to improve research and a lot of this focussed on ‘personalised medicine’. Did you feel this was explained to you so that you understand it better following the G8?”

Yes

No

b) Please elaborate if you wish.

[open ended]

17. The research community is absolutely clear about the distinction between normal ageing and disease: agree or disagree?

Yes

No

18. Do you feel that #G8dementia addressed the notion that people do not always have the right knowledge and information to manage their condition?

Yes

No

19. Do you feel that #G8dementia promoted ‘living well with dementia’, for example through health innovations?

Yes

No

PART B

Question 20

20. How well do you think the #G8dementia Conference did in addressing the needs of the following groups of the following people?

[Answer from 0 (not at all) to 5 (completely)]

Researchers
Pharma Industry
Persons with dementia
Carers of persons with dementia
Journalists and the media
Politicians
Big charities
Small charities

PART C

Questions 21 – 28

21. What do you believe the #G8dementia summit set out to achieve? Did the organisers achieve in their aims?

[open ended]

22. Do you have any concerns about the way the #G8dementia summit was conducted?

[open ended]

23. What do you expect the #G8dementia summit, in fact, will achieve ultimately?

[open ended]

24. Do you think the #G8dementia helped decrease the stigma which has been associated with dementia?

[open ended]

25. Do you feel the public is generally united in their perceptions of dementia, or do you there exists a diverse range of different perceptions?

[open ended]

26. Do you think negative perceptions of perception exist by members of the public? Why or why not?

[open ended]

27. Are there any positive perceptions of perception by members of the public?

[open ended]

28. Finally, do you have any views about what the aim or purpose of the #G8dementia summit was? Do you know how it was instigated, and by whom?

[open ended]

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