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Hospital care for dementia sufferers has been in the headlines this week but a recent report for the Nuffield Council on Bioethics has highlighted that carers of people with dementia need more support and advice.

Carers particularly need that advice and support in tackling the difficult ethical dilemmas that they face on a daily basis. These could be having to lie to a spouse to be able to get them to a day care centre, or worrying about a family member slipping in the bathroom - when going into the bathroom with them and intruding on their privacy can be very upsetting.

The report also highlighted that the services needed by people with dementia are often not available until a crisis occurs.  

Professor Tony Hope, a psychiatrist with many years of experience of working with people with dementia and a Professor of Medical Ethics at The Ethox Centre, University of Oxford, chaired the working party that produced the report. OxSciBlog caught up with him to learn more.

OxSciBlog: What were the main findings of your report?Tony Hope: Ethical issues arise frequently for carers in their day-to-day care. These issues are often difficult and stressful, and carers receive little help with these ethical issues. We also found that there’s often a stigma associated with dementia that is still a major problem for those with dementia and their carers.

Many people with dementia receive little support after initial diagnosis is made. In addition, some professionals withhold information from family carers that such carers need in order to properly fulfil their caring role because of excessive concerns about patient confidentiality. What is more, the amount spent on dementia research in the UK appears small in comparison with its importance. For example, cancers are about three times as common as dementia but receive about ten times as much research funding.

OSB: What are the sort of ethical dilemmas that families and carers of people with dementia experience?
TH: Carers routinely face dilemmas, such as whether to tell the truth or not when the truth causes some upset or stops the person taking part in an activity that is enjoyed. There’s the difficulty of balancing the need to minimise risk with enabling the freedom of the person with dementia, for example where a person may be at some risk from wandering or from cooking for themselves.

Similarly, technology, such as tracking devices or home video monitoring, might reduce risk but also invades privacy. And importantly, the carer’s own needs and interests have to be balanced with those of the person with dementia.

OSB: What can be done to help support carers?
TH: More information and support from professionals is needed in dealing with ethical difficulties. Forums to enable carers to discuss the difficult decisions with each other would also help. And carers need to be seen as ‘partners in care’ by professionals – unless there is evidence to the contrary there should be a presumption of trust in carers by health and social care professionals and by care workers.

OSB: Can you give any examples of where this is working well?
TH: There are many examples where things are working well, but they are sporadic and only available in some places. There are about 20 Alzheimer cafes throughout the country where people with dementia, their carers, and local professionals can meet. Admiral nurses provide support to carers in their home, but are not widely available.

In some areas, a GP with a special interest looks after the residents with dementia in all the local care and nursing homes, while a few hospitals employ specialist nurses or doctors for those who come to A&E departments or require treatment not primarily related to the dementia. And there are a few meeting places where people with dementia can attend film showings or have access to a hairdresser without feeling awkward.

OSB: What would you like to see happen next?
TH: We would like to see more support for carers – for example through more trusting relationships with professionals, opportunities to meet and share experiences with other carers, and encouragement to consider their own needs too. People with dementia need improved access to leisure activities that others take for granted. Shops, restaurants and leisure centres have a legal duty to enable people with dementia to access their services.

We recommended that the Equality and Human Rights Commission should provide practical guidance on how to enable people with dementia to access services. When a person is diagnosed with cancer, a wide range of services can be accessed. This is not true in the case of dementia. This is in part because some of the services required for people with dementia are classified as social care, rather than health care. Dementia is a medical disorder and the availability of services should not be determined by the classification of the type of care needed.

How does the machine that enables bacteria to swim actually work?

Matt Baker of Oxford's Department of Physics and colleagues are investigating this machine: known as the bacterial flagellar motor.

Matt recently became a NOISEmaker and is helping to explain the wonders of  thrashing bacteria, as well as spoken word poetry, MCing and fencing, to school students (read his NOISE blog for more). I asked him about Nature's motors and his first taste of science communication:

OxSciBlog: How does the bacterial flagellar motor compare to manmade motors?
Matt: Baker: The Bacterial Flagellar Motor (BFM) is only 40 nanometres (nm) across, approximately one-thousand times smaller than the smallest speck of dust, and can rotate at up to 40,000 revolutions per minute (rpm). By comparison, Formula One engines are metres in size and are can operate at 20,000 rpm, and some jet engines rotate at 150,000 rpm.

The BFM can not only rotate very fast, it can also change direction of rotation in thousandths of a second, and it is this ability to switch the direction of rotation which enables bacteria to navigate their environment, moving in alternating ‘runs’ and ‘tumbles’ toward areas of high nutrient.

We aren’t able to make a motor anything like the BFM at the moment, in terms of size and structure, speed and function, and yet this motor assembles itself in the cell membrane and is responsible for one of the oldest sources of motility on the planet.

OSB: What are you hoping your investigations will reveal about it?
MB: Our group work on resolving the discrete steps that constitute this rotation. Rather than spinning smoothly, the rotation of the BFM is made up of tiny 14 degree steps, which, when the motor is moving fast, appear continuous.

Personally I have built a temperature controller to explore the motor’s rotation at high and low temperatures, to investigate how the speed and energy source change with temperature, and in the future to explore how the frequency, size, and distribution of steps may change.

OSB: How do we think the environment affects the motor's behaviour?
MB: The motor is powered by an ion gradient, that is, protons or sodium ions, depending on the type of bacteria, flowing from outside the cell, at high concentration, to inside the cell, at low concentration.

So the environment and the concentration of salt or the pH of the solution, affect the amount of energy available to the motor. In different environments it has different amounts of energy available and will rotate at different speeds, driving different loads.

OSB: How might what you find inform the creation of new technologies/devices?
MB: Motor proteins convert chemical energy into mechanical force, and this is the basis of movement, which is essential to life. They are found in myriad places such as muscles (myosins), inside cells (kinesins/dyneins) and in the rotary motor of bacteria.

Currently we aren’t able to build dynamic motors that are only 40nm in diameter, or composed of 45 different types of self assembling proteins, that can convert chemical energy into a mechanical rotation. Part of learning to develop these motors is understanding how these biological motors function, how they have evolved, and then adapting these learned lessons.

One approach is to use components of these motors to make new motors, such as the chimeric motor used by our group that is powered by sodium ions, or to use cobbled together parts of other rotary motors to build synthetic swimmers. Investigations like this allow us to begin to dream about the day where we might be able to build a protein motor for a specific task.

OSB: What's been the highlight of being a NOISEmaker so far?
MB: Being a NOISEmaker has introduced me to a great group of people that are doing interesting science, that is relevant to the community, and are excellent at communicating and explaining their research. It’s also taught me a lot about how to present your research to the public and to the media. It’s been a great window into the world of public relations, with which I had no familiarity, and also it has helped me meet some interesting people that I hope to work with in the future.

The highlight, so far, has been an introductory day where we brainstormed some ideas for novel ways of bringing science into the public, and then being able to try some of these ideas out at a festival called Underage where we presented different aspects of science to 15 year-olds.

Ecoli showing bacterial flagellar motor in action, image: National Science Foundation. Video taken by Mostyn Brown, Department of Physics.

‘He saved lives but didn’t touch anyone. He took medicine out of the lab and put it in society.'

So Conrad Keating describes the achievements of Professor Sir Richard Doll, the giant of Oxford medicine who helped determine the link between smoking and lung cancer, took on ‘Big Tobacco’, and continually showed the value of evidence-based medicine in guiding public health decisions to benefit the greatest number.

Conrad, writer in residence at the The Wellcome Unit for the History of Medicine at Oxford University, has just written the official biography of Doll (featured in last week's Oxford Times). And Conrad is clear: Doll was a revolutionary, not just in medicine but a social revolutionary too.

He wasn’t a hands-on doctor, he never saw patients – but he established evidence-based medicine as the pre-eminent tool in public health care. ‘The tools of his revolution were pencils and graphs,’ Conrad explains. ‘If you look at the papers in the British Medical Journal in the 1950s, none of them had any stats. Today they all have stats. Doll made doctors count.

‘With Richard, it was all about risk and how to evaluate it. It was a new approach to science, one of philosophical detachment and persuasion through numbers. Richard was always independent and went with the evidence.’

While Doll’s work on smoking and cancer is routinely described as having saved countless millions of lives, Conrad notes with a smile that Richard would probably say that he had ‘prevented premature death’, not ‘saved lives’.

Part biography, part British social history
But Conrad also feels that in writing Doll’s biography that he has written a social history of Britain. Despite Doll coming from a background that was solidly establishment, the suffering, social conditions and mass unemployment he witnessed as a young man in the 1930s radicalised him.

‘His politics pushed him towards public health medicine and doing the greatest good for the greatest number. He didn’t want to just look after the rich,’ says Conrad.

Doll went on the Jarrow march in 1936, when there was 80% unemployment among men in the North East, and treated the marchers’ blisters. He was at Dunkirk, and campaigned for the formation of the NHS – to the point of almost being ostracised from the medical establishment – despairing that only the rich could afford good doctors.

His antifascist politics in the 1930s also led to him joining the Communist party. ‘He described himself as a democratic communist,’ says Conrad. He was a member of the party until May 1957, by which time he had become disillusioned after Soviet tanks had rolled into Budapest and – characteristically – when he felt he could no longer believe or buy into the science coming out of the USSR at that time.

When Doll came to Oxford in 1969 as the Regius Professor of Medicine, some still didn’t want ‘Red Richard’. Yet they were soon won round by his science, Conrad says. Doll would also go on to accept a knighthood and appear as an expert witness for British Nuclear Fuels, showing his independence on every matter.

Smoking and lung cancer

Doll of course is primarily known for his work with Austin Bradford Hill that showed smoking was a cause of lung cancer. (It was an interesting relationship in many ways, Conrad says. Hill was an arch-Tory, but he still gave this young radical a job when he had been in danger of being ostracised from a full career in medicine.)

In 1950, lung cancer overtook TB as the biggest killer in the UK. It was a peculiarly British disease: Britain had the greatest rates of lung cancer and also the highest rates of smoking in the world. It’s hard to imagine now from a modern perspective how prevalent smoking was in Britain. In 1950, 80% of middle-aged men smoked. It was very difficult to find people who had never smoked: just 0.5% of middle-aged men could say they’d never touched a cigarette.

The idea that smoking might be harmful was met with disbelief by the general public in the 1950s. After all, it was their favourite habit. The medical community was also sceptical – smoking was similarly entrenched among doctors. It took 25 years for the media to start to get behind the idea and people’s minds began gradually to be changed.

Doll’s first investigation with Bradford Hill in 1948 into the British epidemic of lung cancer didn’t necessarily look for smoking as a possible cause. Doll even wondered if car exhaust fumes or tarmac might somehow be a cause of the disease. The two researchers gave questionnaires to patients in different wards in the hospital about their background, social class, where they lived and also whether they owned a car, ate tinned food, and many more. Of the 50 questions, only nine mentioned smoking. But they found that those patients with lung cancer were almost always smokers.

To really understand smoking’s role in lung cancer, they then wrote to every doctor in Britain in 1951 to ask them if they smoked, with the aim of following up later to see who developed lung cancer. It took them a year to open all the envelopes they got back. But their 1954 paper with the results is a landmark in evidence-based medicine, showing that smoking was a cause and an important cause of lung cancer.

Doll himself was a smoker for 19 years, stopping in 1949 when it became clear to him that smoking was likely to be damaging his health.

Doll continued to follow up with the British doctors for an incredible 50 years, showing that smokers on average lose 10 years in life span compared with non-smokers, but also showing that stopping smoking had immediate benefits. The results of the 50-year British doctor study were published 50 years to the day after the first paper, shortly before Doll’s 92nd birthday.

But it wasn’t just the effects of smoking that Doll studied. He led the first big study on asbestos in 1955, following stories of high rates of cancer among workers at an asbestos factory in Rochdale, the biggest factory at that time. He completed the first study of links between the contraceptive pill and thrombosis, and he looked at potential leukaemia clusters around the Sellafield nuclear power station.

‘He would say: ”On balance, this is what I think weighing everything up,”’ Conrad adds, explaining that Doll believed nuclear power, on balance, was a good thing. He felt that once the risks had been evaluated, it was down to society to decide on what was acceptable: for example, asbestos has saved thousands of lives through fire insulation, but taken thousands of lives as well through mesotheliomas. The contraceptive pill can have a small increased risk of thrombosis, but it has liberated women allowing them to control their destiny and has a preventative effect for certain cancers.

Much of this weighing up of evidence is evident in an interview he did with the BMJ in 1997.

Doll in person
‘One of the unnerving things about meeting him was that he truly listened to what people said,’ Conrad says. ‘This didn’t lead to easy conversations. He was a busy guy, there was a degree of intimidation in meeting him, and you needed to be on your game … He often didn’t have time for people on a personal level – he had a lot to do.’

Conrad first met Doll while working on a TV package for the BBC. Over lunch at Green College, Conrad says Doll became emotional while telling a story about the Jarrow march. Conrad hadn’t expected this vulnerability and saw a great opportunity.

‘It took a long time to persuade him [to agree to a biography being written],’ says Conrad. ‘He was a private man and a serious scientist.’

He tells me a story as an illustration. ‘We both loved Tolkein,’ says Conrad. After going to see one of Jackson’s films of the Lord of the Rings at the cinema, they drove back at night in Conrad’s ‘decaying’ 2CV to Doll’s house where Richard prepared a midnight feast of boiled eggs and tongue. Richard got them both a Ruddles beer. ‘After we clunked beers, Richard said to me: “This is almost like being friends,”’ laughs Conrad.

Doll never retired, continuing to work almost up to his death aged 92 in 2005. ‘He was uneasy when he wasn’t working,’ says Conrad. ‘On his 92nd birthday he gave a bravura performance at a public lecture in the John Radcliffe hospital to a huge audience.’

His legacy
Doll made Oxford a world centre for epidemiology, with his successors in Sir Richard Peto, Rory Collins at the Clinical Trial Service Unit and Valerie Beral at the Cancer Epidemiology Unit carrying on his work. But more than that, says Conrad, his techniques have been distilled to disciples that now run public health agencies across the world.

Oxford medicine owes more to Doll than anyone else in the 20th century, says Conrad. As well as all the academic achievements, he established five chairs at the University and founded Green College (now Green Templeton College). ‘He was one of Britain’s greatest ever medical investigators and wrote one of the indelible chapters in medicine.

Smoking kills: The revolutionary life of Richard Doll by Conrad Keating is available from Signal Books. A launch party for the biography will be held today for invitees at Green Templeton College.

Image credit: Rob Judges

Once he'd finished On the Origin of Species what did Darwin do with his vast collection of stuffed reptiles, mammals, fish and birds?

Have an office clear-out: or at least that's the amusing idea behind Darwin's Leftovers, a collection of stitched artworks created by over 60 knitters that's on display at the Oxford University Museum of Natural History [OUMNH] until 27 November. 

According to lead artist Liz Lancashire each element of the display celebrates a key part of Darwin's life and thinking: from the Galapagos iguanas and tortoises that showed how natural selection could cause new species to evolve to exploit new environments, to hummingbirds with their odd-shaped beaks giving an ultimate example of specialisation in nature.

She said: 'Charles Darwin had many hundreds of stuffed animals in his cupboard and I wanted to recreate some of the paraphernalia of his scientific collection and capture the day he had an office clear-out!'

All this month Liz will be helping the Museum run a series of workshops for both adults and children exploring the wide variety of 3D knitting and other textiles techniques used to create these curiosities.

It sounds like the perfect skill to learn in the run-up to Christmas: so if you see an iguana-shaped present nestling under your Christmas tree then you'll know you've got Mr Darwin to thank for it.

Darwin's Leftovers is on display in the main gallery of the Oxford University Museum of Natural History until 27 November

It’s the biggest problem in physics: the matter we can see in the universe accounts for just five per cent of the observed gravity that holds galaxies together.

The conventional explanation is that enormous amounts of invisible dark matter make up the missing 95 per cent but some have argued that it’s Einstein’s theory that’s at fault.

In a review in this week’s Science Pedro Ferreira of Oxford’s Department of Physics and Glenn Starkman of Case Western University assess how alternatives to dark matter are shaping up.

‘For over 25 years there has been a proposal that there is no dark matter, that we are simply misinterpreting the data and that what in fact is happening is that we don't understand gravity,’ Pedro tells me.

‘A rudimentary alternative was proposed in the early 80s but only recently were a few complete theories constructed that modify Einstein's theory of general relativity and that could in principle solve the dark matter problem without dark matter.’

Israeli physicist Mordehai Milgrom got the ball rolling in 1983 with a proposal that became known as modified Newtonian dynamics (MOND). Other alternatives build upon this work, such as Jacob Bekenstein’s TeVeS.

Pedro comments: ‘In the review we emphasize two main things. First of all that all of these theories seem to bring in something akin to dark matter through the back door. It is not that they need dark matter as well as modifications to gravity but that any attempt to modify gravity necessarily generates something dark.’

‘The second point is that, even though waters seem to be muddied, there should be observational tests which can distinguish between the two paradigms. By looking at how galaxies are distributed and how they distort any background light, it should be possible to pick out clues for modified gravity, i.e. to test whether Einstein was indeed correct.’

The hope is that galactic surveys, such as those carried out by the Joint Dark Energy Mission or Square Kilometre Array, will be able to see if the telltale signs predicted by these alternative theories really are out there.

Professor Pedro Ferreira is based at Oxford’s Department of Physics