On November 1 Melvyn Bragg will talk about his book Grace and Mary at the Festival of Ideas.  The novel is based on Bragg’s own bitter-sweet experience of his mother’s dementia. Looking back across three generations, it raises fundamental questions about social attitudes and how they shape our lives. Three people discuss some of the big challenges that face us.

Care is a fundamental aspect of human relationships and of societies more generally

Charlie Cornish-Dale

Care of vulnerable groups is an emotive topic, often seen through the prism of crisis, scandal and rising costs. Funding is indeed a critical issue. According to Alzheimer’s Research UK, there are more than 820,000 people in the UK living with dementia: on average each one costs the economy more than £27,600 per annum. But discussions about how the ‘burden’ of care should be met, and by whom, also reveal much about our value systems and how we feel about each other. We asked three people some fundamental questions about care.

Charlie Cornish-Dale is a freelance journalist and editor. As part of his postgraduate research in social anthropology (St Catharine’s and King’s Colleges, Cambridge) he volunteered as a carer in a care home for the elderly where many of the residents had dementia. Dr Gail Ewing is a senior researcher at the Centre for Family Research, University of Cambridge. After training as a nurse, she later moved into research where she has focused on palliative and end-of-life care, particularly from the perspective of unpaid carers.  Dr Claire Nicholl is Consultant Physician in Medicine for the Elderly at Addenbrooke’s Hospital. She is a practising clinician and advises on the interface between primary and secondary care as a champion for older people's services.

How do we think about care – and could we think differently?

Charlie Cornish-Dale: As someone trained to think as an anthropologist, I would say that care is a fundamental aspect of human relationships and of societies more generally. Care is something we all must do for each other at some time, through pregnancy, childhood, illness, disability and old age. It’s not something which happens only in institutions; care did not suddenly become a concern with the arrival of the care home. Kinship is care: whether we are brought up in an archetypal nuclear family or as part of an extended lineage or clan, we have obligations and duties towards defined groups of relations (sometimes even including the dead), which we must learn to fulfil. In talking about obligations and duties, we are, of course, entering the realm of ethics.

As different societies think about and do ethics in different ways, so it is with care. But what we think about care, and how we care, has changed, as our own society has changed, over a span of many centuries.  The progress of individualism has profoundly changed the way society is organised and with it the structures — kin-based, religious and economic —for organising care. The celebrated anthropologist, Alan MacFarlane, in The Origins of English Individualism, traces individualism back to the 13th century, by which time England, unlike other medieval nations, already had a social structure based around the unit of the nuclear family; this, he claims, was a prerequisite for England’s emergence as the first capitalist industrial power, allowing for rapid industrialisation and urbanisation.

Gail Ewing: Care is part of everyday life for most people; whereby we care about others, not just care for them. From day to day, care is the practical stuff we do for each other as the result of our emotional bonds. We’re cared for within our families and we go on to care for our families.  When our children are young we care for them in a hands-on way but as they grow up we move out of that physical sphere of caring. There are, of course, exceptions: some people need life-long care. When care is mentioned, our first thought is care of the elderly – but there are other groups who need care too. When someone develops a long-term condition, he or she may need increasing care over many years.  Cancer can progress rapidly, in which case family members find themselves thrown into a caring situation with no preparation.  Care is something many people find themselves doing to varying degrees.

Claire Nicholl: I chose to specialise in medicine for the elderly because of the huge variety it offers you as a physician in terms of a career.  Most of the time, I absolutely love my job: I now work mainly on the wards and in outpatients clinics, I teach student doctors and train and examine postgraduate doctors. I ‘m also Trust co-lead for dementia services. I see lots of elderly frail people; each has different needs and often there is a chance to make a real difference to their lives. The negative media about the NHS, which I hear when I switch on the car radio, is depressing. Some terrible things have happened and urgently need addressing. But we mustn’t lose sight of the excellent work that goes on or launch an attack on the thousands of people who work in caring roles.

Nevertheless, I do feel that as a society we have moved backwards in terms of how we look out for each other. We tend to stand back in situations where in the past we might have got involved in reaching out to someone in need: if a child falls over we feel nervous about helping them up in case we are accused of touching them inappropriately.  In many communities there’s been a loss of reciprocity – the idea of people coming together to help each other. On a more positive note, many of the elderly people I meet do have wonderful families and neighbours.

In terms of what the state does to look after people, there’s been a rise in public expectations of what the NHS can provide.  For example, people who experience infertility, now expect to have IVF treatment into their 40s; people diagnosed with cancer want access to the best drugs and treatment which can be very expensive for very small benefits.  The NHS doesn’t talk about rationing healthcare, it talks about prioritising – but in effect there’s a finite pot of money and it has to make decisions about who gets what and how much. 

Who should be responsible for care?

CCD: What’s interesting is how we, in the west, categorise people and treat them accordingly, and, in particular, how we order lives into distinct stages, each having its own distinct expectations, responsibilities and mode of experience. This affects not only how we experience and understand our own lives but also how we treat others and, in turn, are treated by them. But our categories aren’t the only way of ordering a life. One of my favourite books in anthropology is No Aging in India, by Lawrence Cohen. Cohen considers the idea that, until very recently, there wasn’t such a thing as ageing in India. This might sound like post-modern nonsense; but what he means is that there wasn’t “ageing” as a distinct stage of life, as an irredeemable descent towards death in the way that we understand it. The elderly weren’t sent to liminal environments away from everybody else, but remained a central part of their communities.

It would be a typically anthropological gesture to say there is no ‘natural’ way to care; that there are many possible dispensations for caring for children, the vulnerable, the ill and the elderly, and that these are demonstrated by different cultures. This is all well and good, but it tells us little about what we should do in this, our, situation, other than that we shouldn’t believe our way is or was in any way inevitable. Cohen’s book is provocative, but it isn’t a guide in any meaningful sense. We have very specific problems. For instance, I worry that the terms of the care debate are solely economic. The ‘burden of care’ is always monetary, never moral. But the question of responsibility is a moral question. We have the resources to have a moral debate, but lack faith in them. All too often, moral debate is silenced by somebody who says, “Well, that’s just your opinion”, the implication being that moral opinions are just subjective; we feel confident when we talk about facts, because they have ‘substance’ we can get our teeth into, but we don’t feel the same about values. 

GE: Historically, care has been something that families undertake and, when it’s good and families are well supported, nothing can substitute this kind of care. It’s always been the case that most carers - both unpaid and paid – are women. When larger numbers of women spent their lives at home rather than the workplace, care was something they built into their other activities. But families have changed: most women have jobs as well as family responsibilities and they find themselves juggling their roles. Despite these changes, women undertake the overwhelming responsibility of care. And it’s women who more often than men find themselves alone and needing care at the end of life.

CN: As Gail says, care falls largely to women, whether they are paid or unpaid.  And in both these cases, women are generally juggling a number of roles. Families are often geographically dispersed and women are likely to be working. So women face all these pressures.  Paid carers get minimal training, their work is low status and poorly paid: yet they work they do is demanding, both mentally and physically, and they are in roles that carry a lot of personal responsibility. This isn’t something easy to fix because for people paying for care at home, or for a place in a home, the costs are already high.  Those people paying for places in care homes are effectively subsidising the care of those in the same homes who are paid for by their local authorities. So society does face some really big challenges in this respect – and there are certainly no easy answers. And the pressures on families, and on the NHS and other services, are inevitably going to get greater.

Can caring be taught?

CCD: My research focused precisely on the question of learning to care. One doesn’t just walk off the street into a care home and start caring: I had to shadow experienced carers as they worked and learn from them. They told me that in order to care I had to “turn off” my emotions, to dissociate doer from deed and ignore provocations from the residents. Because residents were seen as lacking the necessary stable mental state to be responsible agents, you couldn’t blame them for bad behaviour, and reproaching them would only upset them and aggravate their condition. All this might sound rather different from the official line on caring, but this is exactly what new carers were doing: learning to see the residents as being irresponsible and undeserving of blame. This account of care’s necessary work on the self comes very close to a famous philosophical account of attributing blame. In his essay Freedom and Resentment, PF Strawson argues that attributing responsibility has nothing to do with an objective measure ‘out there’ in the world, but is about the emotional stances we take towards each other.

When we see someone as irresponsible, we suspend our habitual emotional responses, adopting what he calls an “objective attitude” and making that person no longer a full player in our moral games. This was something I had difficulty doing at first, being completely unused to interacting with elderly people with dementia. I had never been in a care home before and my family has been blessed with remarkable longevity: at 94 my great-grandmother Winifred was still taking a restorative Guinness daily and leaning over the banister to pop money in the electricity meter. Though some of the residents seemed to me as close to dead as it is possible to be when alive, others were less obviously incapable, and yet their behaviour could vary quite dramatically from day to day, or even within a single day, making it unclear what to expect of them and how to respond.

GE: I trained as a nurse at the Edinburgh Royal Infirmary and I can clearly remember being shown by the ward sister how to bathe a patient.  She demonstrated to me, by the way she went about her this task, just as much as by what she said, that washing someone was not a lowly task but something quite vital. It was an opportunity to assess the patient, observing how they were, talking to them, while the care was provided.  When it came to serving meals, there was the same attention to detail: food was selected from the trolley for its suitability to individual patients. We were taught to make a note of how much patients ate and drank, and help them if they needed help. Basic nursing care was something seen as valuable and skilled. I found the example of this sister inspirational; she taught me a tremendous amount about taking a pride in your work and upholding standards of care. 

As for learning to “turn off” your emotions, I think that you do need a level of professionalism but I think this can be overdone. It’s not appropriate to be cold – but on the other hand it’s not appropriate to be too matey either. Niceties such as how you address a patient – by their first name or as Mr, Mrs or Miss if that is preferred – are so important to the dignity, and self-esteem, of the patient. All these apparently small things add up to create an environment that is either caring or not.

CN: I think the ability to care generally goes back to how you were brought up – and whether you were encouraged to be kind to people and animals, to think about others, and to respect other people’s space. Communication skills can be taught and improved on through tips and strategies to raise professionalism. But it’s very hard to teach caring from scratch. The extent to which someone feels empathy, or a sense of compassion, varies from person to person. If you don’t feel empathy for the people you’re working with, and paid to look after, you really shouldn’t be working in a hands-on caring role. The reality is, however, that if you’re unskilled and looking for a job, then the jobs readily available to you are likely to be in the care sector. As for how you go about caring, your personal style, it’s also true that everyone has a different way of doing things: an approach works with one patient won’t necessarily suit another. That’s a fact of life we can’t avoid. 

Is there a crisis of care?

CCD: I think how the idea of how a care crisis is framed in the media and the public imagination, is as interesting as the question of whether it actually exists or not. Clearly, the economics of care are frightening, and made even more so by the current political and economic dispensation. But we need to make sure we are asking the right questions and looking in the right places. The general idea of a “crisis” might itself be a problem, smuggling in certain assumptions which cloud our thinking or make us favour certain lines of questioning over others.

We should be alert to the fact that we seem only to have economic crises today. The care crisis is no different, being presented as an economic, not a moral, problem. Even a major study like Dementia 2010 sticks to the facts (the figures) and avoids the language of values. It’s the same in the newspapers, more or less. In a recent piece on Labour’s care policy, for instance, Polly Toynbee used the word ‘fair’ essentially to mean ‘distributed along more economically equitable lines’; she did not question whether there might be a way to care for the elderly which not only takes into account the distribution of the cost, but equally asks what they deserve and are due from their loved ones and from society.

When we do discuss morality, usually in cases of abuse by carers, what’s often emphasised is its singularity— there are only individual scandals involving individual care homes and individual carers (Winterbourne View, Mid-Staffs, Hilton Gardens, etc).The French sociologist Pierre Bourdieu famously said that Watergate wasn’t a scandal, because for something to be a scandal it had to be individual or unusual; how many Watergates had there already been, and how many were there to come? American politics itself was the real scandal. He could just as easily have been talking about care today.

GE:  The scale of need created by the growing elderly population has been well documented.  Many paid carers working in residential homes and in the community do an exceptional job – but they receive minimal training and are rewarded by minimum wages for caring for some of the most vulnerable people in society. This doesn’t give carers – or the public at large - a good message about the importance of their role. It’s shocking that carers paid to support people in their own homes are generally not paid for the time they spend travelling between visits – and sometimes not even reimbursed for their travel costs.  Some paid carers are on zero hour contracts which give them no job security. This situation urgently needs addressing.

There is another less immediately visible problem too: a crisis of individual people not recognising the situation they are in. Carers looking after family members or friends start out by providing one level of care but it often escalates so they continue to provide care with no service input – and often no knowledge of what support they could access. This can lead to cases of crisis – especially when one elderly or frail person is looking after another.

CN: I fear that this winter, and if not this winter then next winter, could be a really difficult time for the NHS. In my opinion, we have had far too much political interference and reorganisations which have led to a loss of staff morale and affected the ways in which people feel a sense of ownership of their jobs. In the case of recent scandals, which are inexcusable, most of those involved were not ‘bad people’: they were let down by the system and slipped into struggling to meet targets and  jumping through hoops rather than looking at the care provided to patients for whom they were responsible. A system in which one Trust has to compete with another, and is judged on the bottom line, is not a system that is putting compassion first: it’s a system that prioritises targets over people.

Is there a solution to this crisis?

CCD: I think we need to be certain what the nature of the crisis is. There clearly are economic problems.  But even if we solved the immediate economic problems— if more funding were made available for dementia research, diagnosis and treatment, for instance — then the structure of care institutions, if it remained intact, might still make abuse and mistreatment inevitable.

As long as the elderly and the vulnerable are treated as objects to be administered to, in a better or worse way, then I think the moral problem will remain. The question is whether we can find ways to allow the elderly and the vulnerable to exist actively, rather than passively, within, rather than outside, society. This is the provocative message at the heart of No Aging in India, that we don’t have to do things this way — that the elderly don’t have to be passive and that their existence and experience can be profoundly meaningful, both to themselves and to those around them. But moral questions barely register at the moment. Making them register won’t be easy.

GE: We certainly need a much better career structure for carers to encourage them to develop and move forward – the introduction of NVQs is a valuable first step and must be encouraged. Care is unpredictable by nature: this is at the crux of the challenge. As the journalist Jackie Ashley, wife of Andrew Marr, has pointed out in interviews about their experience of Andrew’s stroke and recovery, paid-for care is organised to pre-planned time slots. Andrew’s carer would arrive at 7am – but he wanted to get up at 6am which meant that when the carer arrived assistance was no longer needed. This is just a small detail but it reveals so much about a crisis facing not just one family but many others too. Jackie Ashley has also raised the question of whether family leave could be broadened beyond maternity and paternity leave to include a range of situations and scenarios.  There is no substitute for quality family care – and we can strive to help families to make that care possible.

CN: Caring for the frail older people whom I see, many of whom have cognitive problems, takes a lot of time and this puts real pressure on staffing budgets. People with dementia don’t necessarily feel hungry at meal times and feeding them takes time, skill and patience. We’re now seeing an increase in the use of volunteers to undertake these tasks in hospitals.  At Addenbrooke’s Hospital, Giles Wright, Voluntary Services Manager, is working on a programme to ensure that all volunteers in the hospital have basic training about dementia and those who express a particular interest in working with older people have additional training and on-going support.

There’s a lot of talk about assistive technology and how it can play a role in care. It’s a term used to describe not just devices that allow people to do things like close the curtains, switch the radio on and heat up food remotely, or ways of monitoring people at home – for example whether they are walking around and have opened the fridge – but also covers the development of robots as companions in the home, something that’s been explored in Japan. I’m sceptical about a lot of this: essentially people need people, not gadgets.   Pets can provide companionship and a new development is the training of dogs. Dogs can enhance the quality of life of a person with dementia – but once again dogs need people to look after them.

With the number of very old people increasing dramatically it’s likely that attitudes to euthanasia will eventually change. At present, there’s a lot of skirting around the issue in professional circles. Many people, especially older women, tell me that they are worried about becoming a burden on their families, and are really frightened about losing their independence and dignity. These people tell me that they would like to have the choice of going to Dignitas but are concerned that when they might want to end things they will not able to make the journey.

To purchase tickets (£6) for the Festival of Ideas talk ‘Melvyn Bragg in discussion: dementia narratives – the art of care’ phone 01223 353053 email mindsarts@gmail.com or visit www.artsminds.org.uk

For more information about this story contact Alex Buxton, Office of Communications, University of Cambridge, amb206@admin.cam.ac.uk 01223 761673

Inset images from top: Vinoth Chandar, Sceptre Publishers, Jess Golden, Magnus Franklin, Phil and Pam, Marmotte73, Melvyn Bragg

 


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