This post is an evaluation of YouTube vieos on palliative care and palliative care social work. It briefly tells you how to find YouTube, assuming that there will be some of my readers who have never done that. There is then some comment on the top videos the week I did these searches, and this is followed by some overall comment, which you could sum up as ‘could do better’.

Finally there a sort of appendix which tells you how to use the YouTube video viewer, again assuming I might have some readers who have never used one of these things.

People who don’t use YouTube probably just know it as that controversial site that teenagers are supposed to look at to find unsuitable videos of unknown rock bands, which then shoot to popularity, or films uploaded by oppressed groups in countries who don’t have much access to the internet.

In fact there is a very wide range of material uploaded, including stuff on medicine and social work, and a lot of members of the public might well look there for information about palliative care, and might be more used to visual presentations than reading documents or leaflets. Some alive organisations have obviously realised that, because there are a lot of ‘what is palliative care?’ type presentations. Obviously there aren’t any alive organisations in palliative care social work, because I didn’t find much about that.

By the way, St Christopher’s does not allow staff or me to view YouTube at work – this is to stop us wasting our time and Hospice resources watching rock videos at work. So I had to do this at home. You might find your workplace does the same.

Using YouTube

If you’ve never used YouTube, it’s a simple process. Search on your browser for the site. As with a lot of internet sites, it’s about being up to the minute, so it shows you a list of recently uploaded stuff. If you use the YouTube search engine to search the site, you simply put in “palliative care” or any topic you fancy, and it comes up with the most recently uploaded stuff with that computer tag. When I did this for “palliative care” this week I’ve noted the first ten things I got; there were only three for “palliative care” and “social work”. It would change over time, although my experience is that it hasn’t changed all that much over several weeks; palliative care obviously isn’t the hot topic among the tuberati.

Palliative care search comes first, then “palliative care” “social work”.

The Palliative Care search

First up came a German film that looked very hospital, but I couldn’t understand it, so I’ve left that one out.

Student Volunteers in Palliative Care in Kerala

http://www.youtube.com/watch?v=gfdUKcH-ZPg

This is an Indian man talking briefly about how wonderful it is to volunteer in palliative care in Kerala, India. It’s not clear what they do, how they got involved or anything practically useful, so it’s a bit of a pointless puff for volunteering in principle.

Cancer and Palliative Care Video.mp4

http://www.youtube.com/watch?v=KSVljzqeKBA

A UK video showing GPs how to find things about palliative care on the internet; it shows you how to click on various sites. Boring presentation but useful, I learned some things from it.

Palliative Care: What is it and who is it for?

http://www.youtube.com/watch?v=ttW8pxF__g4

This is an American film, presenting palliative care as something that hospitals do, a medical treatment for pain and other symptom relief done in hospitals alongside curative treatment; it does mention social workers, but all the speakers are doctors, even the patient experience. There’s a mixture of people talking to camera and pretty pictures.

Pain and Palliative Care: What the Future Holds

http://www.youtube.com/watch?v=Ai-MbsANxHY

A film of an American lecture from a university somewhere (they tell you the initials of the University at the beginning, obviously the rest of the world will know what it is) by Katherine Foley, an eminent American palliative care physician. It was obviously such an important lecture that she had a hair styling for the occasion: it doesn’t move. Neither does she, much, she was obviously told to stay in view of the camera. She reviews the progress of palliative care and has an international focus. You see the PowerPoints filmed as she talks, which are not easy to see in this format and some of them you can’t read. The presentation is very comprehensive, but very professional i.e. boring. It goes on for nearly an hour, so I haven’t watched the whole thing, and therefore I don’t know if it mentions social work. She does talk about palliative care as a human right.

Canadian Virtual Hospice Palliative Care Video

http://www.youtube.com/watch?v=ZWLoQkJD0WA

A 7 minute film about a Canadian information website, introduced by Chochinov, a well-known beardy in supportive care; it describes the site – you can submit questions for an expert to answer, and it has discussion bulletin boards and the usual information. There is an affecting account by the adult daughter of a cancer patient. Nice film, lots of variety.

Right to Relief: Palliative Care in India

http://www.youtube.com/watch?v=0_FK-5aMkEo

A 4-minute Human Rights Watch video complaining about how the Indian government and most of Indian medicine does not make pain relief through cheap morphine available. Good photos and video and presents a range of settings, including home care, so it gives a picture of what is probably quite a good Indian palliative care service. Presents the international human rights issue of availability of morphine succinctly and caringly.

What Is Palliative Care? – Dr. John Mulder

http://www.youtube.com/watch?v=QIF99iKnVcU

This American (?) doctor for a private sector health service describes palliative care as a consultative service for the longterm quality of life consequences of being treated for a life-limiting illness. He’s interviewed by an extremely thin, blonde, glossy woman in red, and in the 2-and-a-half minutes it does mention bringing in social workers. Talking heads stuff, presumably to advertise their services.

What is Palliative Care?

http://www.youtube.com/watch?v=Uy5PDoPfmWQ

Brief film, Diane E. Meier, Director of the American Center to Advance Palliative Care, talking about the kind of patients who might be helped by palliative care. Talking head stuff again. Going down the list further, there are several short films from the Center of the same sort and format, all about the American system as though the rest of the world does not exist, so it makes it peculiarly irrelevant.

The social work and palliative care search

Then I searched for “palliative care” and “social work”. This is what I got:

Social Work and Health Palliative Care – Care Accolades 2009 finalist

This is a one and a half minute film about Angus social work department (they’re not called social services or social care in Scotland, but that doesn’t mean that everyone involved are social workers). They obviously nearly won the prize for this competition for good services. The scheme is about generalist palliative care: it refers to a two-day training the trainers project to give training to it-wasn’t-clear-who, and they gave training to 122 (count them) front-line carers, who then said they were much more confident with advance care planning and talking about death and dying, presumably either with people in care homes or receiving community care services, it’s not clear. Professional film, but not really much information, and as it’s a prize competition, it’s not really a critical discussion of the issues.

Hospice San Miguel

http://www.youtube.com/watch?v=JFWNL9z8_wk

A five and a half minute ‘promo trailer’ for this hospice – it turns out it’s in Mexico, but you wait a long time to find that out, and it rather feels as though it’s an American city with a lot of Latino/a people. They would clearly like to influence American palliative care with their experience. Don’t be put off by the start, which is in Spanish, because most of it’s in English and there are subtitles when people speak Spanish.

It seems to be an American neo-colonialist project run by Americans for Mexican people (although the volunteer coordinator of the bereavement service may be British) and the comparisons made are with the American medicare system for funding hospice care; they claim they are going to show America how to be more flexible. It seems this is just about not having government interference. It’s not clear whether there is an in-patient unit or whether it’s a community service only, since they don’t actually say what they do, just tell you how wonderful it is. There is some patient and carer ‘testimonial’. There is a strong focus on bereavement groups and family work, which is achieved by getting social workers and volunteers in early (more or less the same thing as far as the speaker is concerned – it’s not clear who most of the speakers are, but they present as very do-gooding). The message of the film is mainly: ‘don’t be frightened of hospices, come early for care’. We can all appreciate the need for this, and it is well-filmed and produced.

End of Life Care Panel (10/30/09)

http://www.youtube.com/watch?v=t7g1WO68KYE

This is a panel of four people, one of whom is a social worker, answering questions; she talks well from experience about working with people with a different ethnic background. It looks as though it’s a public event by the Commonwealth Club of California explaining palliative care to the masses (well, poorly informed professionals really, I would guess; I suppose they are the masses). It’s led off by an extremely boring (male) medical professor with a grating voice and a very long job title saying how other medical specialities need palliative care. But it (and he) get better; there’s a very warm and practical nurse, a glossy, severe lawyer and a frizzy social worker. Most of the discussion is about assisted dying and advance care planning. It’s very long, more than an hour, and a very boring straight filming, with the occasional mid-shot of a panel sitting crammed unmoving behind a small table. I haven’t watched it all.

The Evaluation

There is some material on palliative care on YouTube, but not a lot and it’s mainly talking heads or educational. It’s mainly American, so there’s an opportunity for British organisations or individuals or people in other countries to make a good impact. In fact British viewers are likely to be seriously misinformed by the American stuff. And the American stuff is very American; there’s no attempt at international coverage in the American material, except in the lecture by Katherine Foley.

However, her lecture and the panel discussion from California illustrate the other problem with academic material on YouTube, they’re very long, very static and very boring. I cannot imagine anyone being prepared to sit through the whole thing. However, there is useful material in this stuff, but it should be carefully edited. At least cut out the doctor moderator with the two-minute job title (I’m exaggerating but not by much). Academic presentation like this also needs to be interspersed with appropriate illustration. The lecture had very interesting material, but it needed to be animated and shown properly. This requires work, guys. Not just slapping it on the internet.

You can put up with talking heads for a minute or two but not much more than that. Come on, we’ve seen the BBC or CNN, we know what it should be like.

Another weakness of some of the material is that it is promotional and it really does not make clear what it is promoting, so you don’t get to know what the volunteers do, just that (for a couple of minutes – it was so repetitive I almost switched off but I couldn’t believe he could say so little again and again) it’s wonderful that it’s there. It’s even easier to switch onto the next thing on the internet than it is with a television set or radio, so your material really has to be focused.

On the other hand, some of the short films which wanted to make just one point with interesting film or photos and lots of variety are really informative. Going for that makes a good impact. Less is more.

The new pot of multicoloured pens on my desk betokens the fact that the Chief Executive has sent me to one of those sponsored conferences, the type where there are lots of people selling things that think giving you a pen, or (latest fad) a canvas climate-friendly bag, will get you to buy their wares. On this occasion the main sponsor was Unipart. You may think this is a vaguely familiar company name: no, not ‘Hitler has only got a Unipart’, but the car parts company that was spun off from the failing British Leyland in the 1980s. The guy from the company had a good line: ‘Rover is over’, with a missing letter in the doctored logo. Anyway, this lot have redefined themselves as a health and social care management consultancy: transferable knowledge for transplant surgery I suppose.

Actually the Unipart management consultant was the best speaker among the drones in the first half. Although I do wonder about a management technique that tells you that staff engagement is so important, but that managers need to ‘drive through’ change (although perhaps this analogy was a leftover from his car industry past). I’m afraid I’m a Toyota staff member: my accelerator’s bust. Another example of businessification: why is it assumed that some failed car company spinoff (I know Unipart was thought to be the unipart that was successful about British Leyland) has management skills in health and social care? Personally, I’d have a lot more confidence in less industry experience and more health and social care experience.

Mount Fuji at sunrise – we’re still in Japan.

The conference in Japan was – their choice of subject – on holism; I was never very sure why this was an issue for them; however, it is a current interest of mine.

I think the view of palliative care holism that it is about total pain and bringing together physical, psychosocial and spiritual issues is an outdated concept. I ask myself: what does it mean to be whole, in health and social care services? It is not just holistic medicine either, that is just looking beyond the immediate symptoms you are dealing with.

What it is about is the conjunction between health and social care; the Department of Health ‘healthandsocial’ which we have all been taught to say as a slogan of togetherness, but nobody really does anything about, especially in healthcare because they think that only healthcare matters, and that everything else ought to contribute to it, particularly social care..

Anyone who’s actually worked in social care knows, though, that it is part of a whole gamut of public services: housing, social security, justice, transport, leisure, education etc etc. Many things we do as part of social care for a frail older person involves many of these: adequate housing, adequate and correct social security, feeling safe, being able to get around in spite of frailty, being able to live some aspects of life that you enjoy, being able to develop yourself. Healthcare is just the instrument of being able to live all these social aspects of life. When you have an illness, you want to be cured so that you can get on with your life.

So the question you have to ask when thinking about holism is: what does it mean to be a human being, a whole person. And that certainly means being healthy, but it also means all those other aspects of social well-being, without which being healthy doesn’t matter much. That is one of the reasons why people are saying they would rather be helped to die than kept alive but with no quality of life. What does being healthy mean as part of being a whole human being? Being maintained alive but without human opportunity is being questioned, so we need to think about and try to achieve being wholly human up to the end of life. While that means more than healthcare, we haven’t yet done enough to say what our services need to do to achieve being wholly human. Slogans like ‘dignity’ and ‘respect’ do not achieve this, because again they are simply about being treated as human within health and social care, not being human in our whole lives.

The Cochrane Collaboration published two new papers last month that might be of interest. Or they might not of course because the CochCollab publishes reviews of evidence-based practice in healthcare, and they have such a limited view of evidence that most of what they publish has very little point. Hence these two: one is on whether end-of-life care pathways (like the Liverpool Care Pathway, which the Department of Health recommends) have generated any evidence to say it’s of any use. Similarly music therapy in palliative care. The answer in both cases is ‘no’.

What are we doing all this for then? you ask. Generalised organisational practices such as integratied care pathways involve so many factors that it’s hard to imagine any random controlled trials telling you anything useful about them. And music therapy or music activities are such a disparate range of activities that it’s hard to imagine…similarly. And again, since they are mainly concerned with whether these things have any effect on symptoms, physical or psychological, or vague concepts such as quality of life or potential harms they’re hardly likely to come up with any results.

Lets be clear; there are some aspects of healthcare, such a physical treatments, that have measurable effects on human beings that you can calibrate and you neeed to do it for safety and effectiveness. There are other aspects of healthcare that are about how you organise a fairly complicated service or some aspects of the care environment that might make people more comfortable and happy. These cannot and should not be measured in the same sort of way; their objectives are different. Whisper it gently, they are often about achieving such social objectives as a speedy, thoughtful and congenial response to people’s feelings about what’s happening to them.

This sort of pointless activity brings the whole research enterprise into disrepute. Healthcare research is just not asking the right questions about the appropriate care environments that give people dignity and a caring experience.

But if you must read these things:

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD008006/frame.html  (end-of-life care pathways).

http://mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD007169/frame.html (music therapy).

Although I’ve mentioned the proposed NHS constitution before (this is the proposal to turn targets into patients’ rights). Cynics say this was invented by Labour to force the Conservatives to be against patients’ rights by making it expensive and embarrassing to back away from the sorts of standards on waiting times that we have become used to over the past ten years or so.

One of the proposed rights is a ‘right to die at home’. This is not going to happen because it is set for 2013, by which time Labour will probably be out of office. The proposal is sensibly backed up by the development of advance care planning (see my resource document on this). The crucial bugbear, of course, is that when you give someone a ‘right to die at home’, you give family members and other carers the responsibility to stress themselves out coping with situations they should not have to cope with. The reality is that many people need to go into hospital for their own and their relatives’ security and peace of mind. The important thing to think about for most patients and their families is what is called ‘preferred place of care’. Where you die may be less important for most people than where you are cared for. But if you give people the right to be cared for where they want, you open our health and soical care budgets to a huge possible expenditure. Much easier for the politicians to get sentimental about where we die.

However, the document is right to say that if you are going to do more than just say the words that people should be able to die in their preferred place of care, then you have to have a whole range of good community services available in people’s homes. And as I never tire of saying, because people in palliative care think they own death, most people will not be getting the high standards of palliative home care, but a worried and hard-pressed district nurse and GP without perhaps the confidence or the time to do a good job.

Another issue is the reality that patients and the people surrounding them might well not have recognised or been prepared to admit that the patient was dying, so they didn’t ask for the care that they really needed. Unlike palliative care, end-of-life care involves caring for people who have not had a clear diagnosis of a final disease like cancer, or the privilege of a careful assessment by someone who really knows and has taken the trouble to look at the patient in some detail, that they are reaching the ‘end-stage’ of something that may well be a lot vaguer. We run the risk of dying at home getting a bad name simply because people are not used to, don’t talk about and don’t always recognise dying when it’s happening at the end of a long phase of increasing frailty.

You can see the consultation on the NHS Constitution, which includes (fairly brief) discussion of the right to die at home at:

http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_108035.pdf

The fact that it’s brief probably means that it’s fairly ill-thought out too. There’s not a lot of sign that detailed thinking has gone into what they are really aiming at, compared with the fairly extensive material on waiting lists. What its inclusion points up, though, is the reality that end of life care is galumphing up the agenda as a political issue. For years politicians and community representatives have worried about waiting lists; perhaps now they are going to worry more about place of death. That’s probably good.

An article in Guardian Public says ‘transformation’ directors (or ‘strategic managers’) are being appointed ion the public sector, and the NHS, in order to make sure that programmes to save costs are implemented to target.

Silly me. I thought transformation meant introducing innovations effectively. However, the statements from public sector great and good take it for granted that it’s about saving money.

See the article at: http://www.guardianpublic.co.uk/

A further twist in the saga of NHS charities; the government is delaying a new accounting standard that means that the assets of NHS charities where an NHS body is the sole trustee have to be included in the assets of the NHS body. People fear this will mean that the assets of NHS bodies will be reduced because of their charitable assets, when the charities should not be supporting the public purse. This mainly affects the big old teaching hospitals that had charities which carried on after the NHS was founded (some of them are very rich), but there are other charities set up for various purposes. Phil No-hope, the care minister, claims this is all about transparency. The Charities Commission says, apparently ,that they would like to see such bodies appoint more independent trustees, but not just so that they can get round these new accounting rules.

I worry about these bodies. I can see that leftovers of the pre-NHS hospital charities needed to continue with a charitable existence, and, amazingly to me, some people apparently leave legacies to NHS hospitals. You have to ask why – these are public bodies. The problem is that these large extra funds support the aims of some already privileged NHS bodies to gain even more privilege, and ignore participative planning and consultation with the people using their services and their local communities. In particular, it encourages expenditure in already rich parts of the country, mainly on hospitals or in the interest of maintaining their NHS hegemony. Charitable monies should be redirected towards community services and not to the interests or already big rich hospitals.

You can see the news report on: http://www.thirdsector.co.uk/News/DailyBulletin/978963/Delay-sought-new-rules-NHS-accounts/60B8C11D571BD969193A7C2FF064BE1D/?DCMP=EMC-DailyBulletin

This post is about some follow-up on the NICE guidance in palliative and supportive care. Non-British readers perhaps need to know that NICE (the National Institute for Health and Clinical Excellence) is the government body that collects research and views about what is effective in various healthcare services, advising government bodies that purchase them. Social workers have been concerned about its discussion of psychological support. In most hospices, social workers do a lot of this. Of course doctors and nurses also do it and probably do most of it, but they tend to pass on the complicated and time-consuming bits. NICE did not really deal much with social work. This was partly because it is a healthcare biased body that gives priority to healththink. Most people involved would have thought that it was fine to neglect the fact that most palliative care patients have been receiving social care services for years before they end up connecting with a hospice. It is also because a similar body (SCIE, the Social Care Institute for Excellence) should do this, but wasn’t commissioned at the same time to do the same thing for social work in end of life care. They don’t do joined up thinking at the Department of Health on social care because they have a healthcare mindset.

The National Cancer Action Team has been pegging away for ages at operationalising the NICE Guidance. It has finally got around to psychological support, which it issued a consultation paper about, and of course it continues to pursue the NICE line. This has hyped social work concern although the consultation is about the measures that peer review teams will apply to cancer networks. These are the multiprofessional committees that coordinate palliative care services in each area, so they’re hardly at the frontline or organising services and the measures actually offer quite a fair bit of flexibility. They are the sort of guidelines that say ‘You’ve got to have this, that or the other plan’, but don’t really tell you what the plan should be.

Whatever, to work out the guidance on psychological support the NCAT has picked up the NICE approach which, not unreasonably, was to ask psychologists what they thought and of course they came out with the idea that anything called psychological should be be done by psychologists. So NICE set up four levels of psychological care, in which, rather sniffily, people such as nurses and social workers can do the two lowest levels of, although they need to be trained and guided by the wise, and the upper levels can only be done by psychologists, or, in the case of level 3 those who have been made a bit wise by being given extra tuition by the specially wise.

In case you haven’t worked it out, in the previous paragraph wise = qualified in psychology or psychiatry. You’ll have gathered that I’m not all that sure that a qualification on psychology gives you that much more competence in responding to people’s life problems or the problems of the world than rather similar qualifications in other related fields (or possibly just developing yourself as a competent human being, but that’s another story). There’s a whole range of knowledge out there and different qualifications give you a purchase on different bits of it.

This kind of specialisation produces sillinesses among all professions. As an example of a psychological silliness I am inclined to quote the British Psychological Society’s publication on psychology in palliative care. This is a classic example of professional imperialism, claiming that the whole world is to be understood as a psychological problem that only psychologists know how to do something about. One role of psychologists in palliative care for example is said to be: ‘Dependency issues, such as fear of leaving the hospice/hospital, etc.;’ (BPS, 2008: 17). They’re welcome to dependency issues, a term which I regard as an offensive way of labelling people as psychologically inadequate for being dependent on others, which we all are. On the substantive point, though, most people who fear leaving hospital or hospice quite legitimately worry about how they’re going to cope with a major illness in their own homes, and they also fear losing their own home and having to go into some ghastly nursing home (they’re not all ghastly, but people fear this move). It just brings psychology into disrepute to call these widely-experienced and legitimate fears ‘dependency issues’. Then seeking to justify psychotherapy to resolve them takes the biscuit. The much more sensible social work approach is to sit down with patients and their relatives, find out what their problems are and organise the services or help them make decisions that remove the problems that raise the fears on the first place. Psychologists don’t do that because they only work with the patient, or their family, they don’t go on to sort out practical problems, or they do that by opassing it on to social workers. I say ‘get a social worker in the first place’. See BPS (2008) The Role of Psychology in End of Life Care. Leicester: British Psychological Society.

One of the problems with the NICE approach is that in reality there are very few psychologists around in palliative care and most of this work is done by social workers.Consequently, it tends to be closely intertwined with social care responses to issues, as you see with the ‘fears on leaving hospital and hospices’ example. It is senseless to set up a whole series of practices that rely on a limited set of ideas associated with one small and not very important profession, that seek to exclude other small and not very important professions.

Another problem is that, because palliative care is not a mental health or psychotherapy service, the main focus is not on psychological problems. Some people (I’m thinking here of Randall and Downie, 2006) have argued that patients and certainly their relatives, who are not anyone’s patients, have not given informed consent for psychological, social and spiritual interventions and all people really need is a nice kindly doctor to assuage their worries. This is a medical silliness similar to the psychological kind. However, it does make the legitimate point that we should be cautious of psychologising or sociologising common humanity. And, says he, delinquently, medicalising it too. See Randall, F., & Downie, R. S. (2006). The philosophy of palliative care: Critique and reconstruction. Oxford University Press.

The NCAT measures, and the NICE guidance, contains a really expert piece of professional imperialism by the psychologists, which says if it’s psychological call a psychologist. NCAT should have applied their minds to it and realised it’s not just psychological, it’s  also a lot of other things. It’s all to play for, of course, because even if NCAT falls for this, the measures are only about how cancer networks organise themselves, not about services. So what social workers have got to do is stick up for themselves, get themselves on the committees and fight for reality as they understand it, just as the psychologists have done for reality as they understand it. Playing the game means joining the team.

Consequently, for the St Christopher’s response to the consultation I have drafted a comment that starts off by saying this:

The long hiatus is because I was doing a lecture in Portugal and then on holiday – the first time for fifteen months. December is Mauritius is a whole lot nicer than in Sydenham. To enthuse you for the season of goodwill, here is a pic of a blood donation service in Mauritius, which shows us that the Ministry of Health there is called the ‘Ministry of Health and Quality of Life’. If this is just spin, we could do more of it in Britain, because seeing the healthcare bit of the government taking explicit responsibility for quality of life might be a reminder of how to look at people’s needs more broadly than we currently achieve:

A new Alzheimer’s Society survey looked at care for people with dementia on hospital wards: a massive 77% of carers were dissatisfied with the weay that their relatives with dementia were cared for in hospitals wards. Would it be any better in hospices? You would hope so, at least partly because staffing is better. But most older people do not come into hospices for their dementia, but for other conditions, so nurses and other staff may be as clueless as their colleagues in hospitals about caring appropriately for people with dementia.

Lakey, L (2009) Counting the cost: Caring for people with dementia on hospital wards. London: Alzheimer’s Society.

Note that many of the official websites focus on social care, not on healthcare; yes, there are healthcare treatments to be done, but most of the issues are about how people live with dementia.

The main BBC report on the study has an interview with Angela Rippon, the former tv newsreader, about her mother as well as a good summary of the main facts:

On the web: http://news.bbc.co.uk/1/hi/health/8359836.stm

The BBC learning site has an ace video case study of a woman with early stage Alzheimer’s and her husband. Although her family resources are such that many of the problems health and social care people see are mitigated, it does show people working on coping.

BBC Headroom info: http://www.bbc.co.uk/headroom/wellbeing/guides/alzheimers_and_dementia.shtml

There are also lots of  good Alzheimer’s society fact sheets: http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137

On a positive note, there’s a lot of useful practical and professional information on the SCIE dementia gateway website:http://www.scie.org.uk/publications/dementia/index.asp

You may also want to look at the Department of Health National Dementia Strategy website: http://www.dh.gov.uk/en/SocialCare/Deliveringadultsocialcare/Olderpeople/NationalDementiaStrategy/index.htm